Raising Saints

The Blue Shield Blues

2012-02-01T15:08:00.000-08:00

Has anyone heard of the break between Blue Shield and UCLA? Blue Shield members are no longer covered at UCLA due to a breakdown in contract negotiations.

Guess who has Blue Shield? That's right, me.

Thank goodness that, after many phone calls and frightening moments, along with a week's delay in my treatment, Blue Shield has granted me a Continuity of Care exception and will continue to allow my treatments through Dr. Glaspy until the 31st of March, by which time they expect I will find a new doctor and treating facility.

Wow.

I have been with Dr. Glaspy and Denise (NP) and their wonderful team of chemo nurses since the beginning and he has done an excellent job of keeping me alive. I don't want another doctor. I don't want another treatment facility. What I want is for Blue Shield and UCLA to kiss and make up before I have to change.

As you all know, I have a Omaya Reservoir in my brain that many doctors do not have any experience with at all. There is no place like UCLA for cutting edge clinical trials. All my records are there. My Radiation Oncologist, who is one of the very best at stereotactically zapping tumors that dare to return after whole brain radiation and stretching out the amount of time patients with brain mets live, is there. I don't want to go, I don't! I know so many doctors and nurses there that I can't go to the cafeteria without seeing someone I know! (Scary, but true). I feel like UCLA is a strange kind of home away from home and I hate that I am being forced to look elsewhere. I hold on to the hope that they will settle this before the end of March, but neither side seems to think this is going to happen when questioned.

We are lucky enough to live in an area with lots of good cancer treatment centers and there are many good oncologists around. I just don't want to find one of them. I am happy where I am!

Blue Shield has given us excellent coverage during all of this and I have been so fortunate to have had the coverage I have had. Is it greedy to say that I want more? Well, I do.

But, like I always tell my kids, "You can't always get what you want..."

Happy 12th Birthday, Lindsey!

2012-01-23T22:01:00.000-08:00

Better late than never...

Lindsey turned 12 on the 19th of January, and I am in shock at the delightful and beautiful young woman who has taken the place of my frowny-faced, uni-browed baby. She is an amazing girl--independent, helpful (especially with the little girls who see her as another mother in many ways), and has a great, unique sense of humor. She is nearly always cheerful, and is a self-starter who has taken off academically this year. I am so excited to see what she becomes.

Above is a photo of the purple panda cake "Auntie" Jen made during her recent visit (it was SOOOO good to have her back and now we miss her all over again). Pandas and purple, in case you didn't know, are Lindsey's two favorite things. She celebrated her birthday with two parties (worked better for me than one big one) as well as a family celebration. She is very convincing in her need for formal recognition of her aging process... (We are all relieved that the endless celebration has finally ended--except her, of course!)

I am truly blessed to have such a sweet and loving daughter. Thank you, God, for Lindsey!

Taking Matters Into Her Own Hands

2012-01-18T09:46:00.000-08:00

Natalie, for a three year old (actually, for anyone, really) is quite tech savvy. She can operate an iPad or an iPhone like nobody's business. She can find Netflix and locate Dora. She can locate all her preschool game apps and play them. But this week she has taken it to a new level. She discovered Amazon.com and, thanks to my automatically populated password (which has since been corrected) ordered herself several hundred dollars worth of Dora the Explorer merchandise over three days. Happily, all was cancel-able but she was outraged that it would not be shipping. Take a look at this screen shots below showing just some of her rampage...

Guess she's a girl who knows what she wants and doesn't mind helping herself to it! But even I was surprised that she figured out how to buy things. I didn't even know she understood the concept, but by the third day I realized this was no accident (I'm a little slow). Gotta love one-click ordering, eh?!

Doing Beautifully!

2012-01-03T21:10:00.001-08:00

Just a quick update to let you all know that I am doing very, very well. I was not sure I would ever again enjoy this level of health and, let me tell you, I am savoring every minute!

I have not been nauseous, I have had loads of energy (I even painted a wall I have been meaning to paint for more than a year!) and, although I am still eating things that some might consider strange (celery and peanut butter and clam chowder for breakfast for instance), I am eating regularly and get hungry like a normal person.

I am doing laundry and dishes, I picked up my kids from school today, and I am catching up on overdue desk work and communications. I have rejoined the world and I will never, ever take regular life for granted again. Or, if I do, I should be hit over the head with a frying pan.

I have a nice gentle treatment of Herceptin tomorrow, am tolerating the daily Tykerb well and have scans in February that, I am nearly certain, will show that, for now, the cancer has been beaten back. I should not get cocky on this point, as we all know cancer is a very, very sneaky beast, but I truly feel as if I am healed for real, a true miracle. Yet, if the news is NOT good come scan time, I am in a good place to receive that news and am so grateful for this reprieve in the meantime.

Thank you once again for your prayers and sacrifices on my behalf. They have certainly been working.

Merry Christmas!

2011-12-23T10:22:00.000-08:00

As you probably could have guessed, I will not be rallying to send out Christmas cards this year. Not such a bad thing when you have a blog! We love receiving them from others and are truly sorry to not reciprocate this year at all. Thank you to those of you who are keeping the cards coming!

If I had any talent at all, I would put Christmas hats on us all or at least take a new family photo for everyone to see, but as it stands I am going to recycle our most recent family photo taken in July just before my hair fell out. We all (except me) look pretty much the same and if you don't mind I'd like to pretend I still look like this.

If I were sending out real cards I would have included a letter letting everyone know what our family has been up to for the past year. Since you are reading this here on the blog you are sure to know exactly what we have been up to, but I thought I would put out a status letter anyway, one that has more focus on other members of the family and what they have been doing. So here it is...

The Di Silvestri Family's 2011 Christmas Letter

Hello family and friends!

As many of you know, this has been a crazy year for us, filled with joys and sufferings.

In July I was told that the cancer had spread to my brain, that fifteen tumors were threatening my life. I immediately began whole brain radiation which left me seriously debilitated until only a few weeks ago. Now, six months later, after some really unpleasant adventures in chemo, blood clots and nausea, I am feeling almost like my old self. My most recent scans show only one lesion remaining in the brain and that it has shrunk considerably, so it seems the treatment was worth it, though there were times in the middle when I was not so sure!

The blessings that this illness has brought to our family have been considerable. Unbelievable, really. We have been completely humbled by the help our communities have poured out so generously. Sacred Heart School and Church, West Valley Rebels Youth Football/Cheer, families we know from homeschooling days, our Opus Dei families and even friends from afar have so overwhelmed us with their loving care that it was clear to us that we had some lessons to learn from this situation! Foremost is charity. There are some amazingly charitable people in this world and it seems that we know them all. God gave us a lot to deal with this year but he also gave us the grace and resources we needed to make it through. Thank you so much to the never-tiring grandparents and friends who so often entertained the little ones, brought meals, drove me and the kids all over creation, did our shopping, our laundry, our dishes. I can never repay you, but please know how grateful we all are for keeping our family running while I was down for the count. I hope I can learn from you and emerge a far more charitable person myself.

Enough about cancer.

Thanks to his faith and strength of character, Jay has held up well in the face of all this stress. Imagine carrying the burden of supporting our giant family financially, plus facing the possibility of raising seven children on his own! He has been a rock through it all and hasn't missed a beat at work. I am very pleased with myself for choosing such an amazing husband.

Jay has just completed his fourth year working for Vivisimo, an enterprise search company headquartered in Pittsburgh, PA. He loves his job. He is a sales engineer and does a lot of demos for potential clients. He is very good at his job largely because he can communicate well with both management and tech. Jay works from home most of the time and travels from time to time, but nothing like he has had to in the past. His company has been incredibly supportive of my illness and encouraged him to take the time he needs to take me to the doctor or otherwise care for the family as a result. They continue to provide us with wonderful healthcare for which we are eternally grateful. A job he loves that keeps him close to home in this economy is no small blessing. We will never take it for granted.

Jay was an assistant coach for Joey's football team this fall and really enjoyed it. He will take a coaching slot for Sam's team next year and is looking forward to that. He continues to be involved in the Knights of Columbus and has taken on some new roles there as advocate and a member of the Columbus Club. He is faithful to his exercise and prayer routines and this is what keeps him going strong.

Joey is doing well as an 8th grader at Joe Walker Middle School. He has a solid GPA, is getting ready for his track season and has lots of friends (that we approve of, thank goodness!). He will soon be taking the Paraclete entrance exam (our local Catholic high school) and is excited about playing high school level football next fall. He had his best ever football season this year playing corner, and is pumped up. His games were really fun to watch. He became involved in Civil Air Patrol at school this year and is pushing us to let him work on getting his pilot's license at sixteen. (Fat chance!) He hopes to be a military or commercial pilot someday, so this is right up his alley. We are proud of the young man he has grown into and look forward to seeing how he continues to grow in high school. Physically, too, as he is already as tall as Jay!

Lindsey is amazing us with her generous spirit, sense of humor and strength of character. She is in sixth grade at Sacred Heart School this year and has emerged as a good, self-directed student, friend to all, helper extraordinaire to her mother, and big sister adored by the little ones. She is a member of the academic decathlon team and will represent our school with her team at an archdiocese-wide competition in March. We are so proud of her for pursuing this and winning one of four sixth grade spots. It is a huge commitment that requires her to practice on Sundays, get to school an hour early one day per week and miss lunch recess once a week. She is constantly making and studying her flash cards on every topic under the sun. She will be a good candidate for Jeopardy! when she is done. Lindsey continues with her cheerleading and just took first place with her team at a recent cheer competition. She also loves to bake and is fattening us up with brownies, cookies and lemon bars.

Sam, too, has made great strides this year as a fifth grade student. He made honor roll for the first time in a few years--we were thrilled! He loves to play football, ride his scooter and hang out with his friends. He is incredibly generous and spent his savings on very thoughtful gifts for his siblings this Christmas. He helps me a lot around the house, emptying the dishwasher for me and getting things for the younger kids. He has a great sense of humor and keeps us all laughing.

Julia, our third grader, is doing very well at all of her endeavors. She is an excellent student, and keeps busy with gymnastics. She is trying hard to make the competition team for next fall and has beautiful form. As a former gymnast myself, I really enjoy watching her practice and learn and grow. I cannot offer the football players any advice, but I "get" what Julia is doing and can offer her practical tips. She also is a big help around the house and with the little kids. I appreciate her very much!

Tony is in Kindergarten at Sacred Heart and doing well. This is his second year of kindergarten, as we sent him to our local public school last year as an extra year of preschool, given his summer birthday. It was a hard decision for us at the time, but seeing how well he is reading we are happy we did what we did. He is getting ready to play his first year of football in the fall. The little ones look like bobble heads in their giant helmets--they are so cute! We can't wait to see how Tony's aggressive physical nature and his sweet personal nature play out on the field. Should be interesting!

Bella at age four is in her second year of preschool and will start as a Kindergartner at Sacred Heart in the fall. She was just the "star" (the actual star) of her school's Christmas pageant and we all got a kick out of seeing her on stage. She was also a mascot cheerleader this year and performed beautifully at competition with her team. We were impressed and very proud. She has grown up a lot this last year and understands a lot more and is much more patient, which has been nice for us all.

Natalie just turned three. She will start preschool in the fall and, for now, is my constant companion. She is very bossy and loud (you kind of have to be when you are the baby of the family) but also sweet and loving. Dora the Explorer has never known a bigger fan than Natalie, and, as a result, she is remarkably well-educated in Spanish for a child in a completely English-speaking household.

As for me, I plan to rejoin the choir in January and hope to cantor again shortly thereafter. Before I can, I have to learn all the new music for the revised translation of the Roman Missle--a strange position for me to be in! I am so happy my tremor is gone and I can sing again. I wan't sure if I ever would be able to again. I am keeping busy with laundry, general clean up, and returning to general household management. I'm still not as strong as I once was but am so grateful for the ability to work around the house again. Who knew it could be such an honor to work?!

If I haven't lost you by now, you are a very loyal reader! Sorry for the length of this letter, but there are a lot of people to account for in our family. We are blessed beyond belief in our current situation and pray fervently that we can hang on to this for awhile longer. So many of you are in our prayers as we know we have been in yours. May 2012 bring even more answers to these prayers and the new ones that will inevitably crop up until I write next year's letter. Aren't I Little Miss Optimistic, that I will be writing next year's letter?! That's what faith does for a person.

Merry Christmas!

Love,

The Di Silvestris (Jay, Suzanne, Joey, Lindsey, Sam, Julia, Tony, Bella, & Natalie)

December 2011

On the Road Again

2011-12-18T17:24:00.000-08:00

I have been cleared to drive!

IF there is no other qualified, licensed driver available, IF it is local and necessary and only then. But still. I am thrilled!

I drove myself to mass yesterday morning and again this morning. It was so liberating! I have not driven, even once, since last July and I have missed being able to do simple things for myself. I can go get milk if we need it instead of having to wait for someone to become available to take me. I can pick up a sick child from school if called without having him/her wait in the office interminably while I find a ride. I tell you, it is the little things.

And the not-so-little things.

As what seemed to be a last ditch effort to do something about my constant nausea and aversion to food, the wonderful nurse practitioner in my oncologist's office prescribed a liquid medication called Megace, an appetite stimulus that has worked well in her experience. It is been a miracle for me this week. I have been nauseous only rarely and have been heartily hungry. I wish I had had this three months ago. But then again, if I had, I wouldn't be 15 pounds from my pre-decadron weight as I am now! So, everything, as always, happens for a reason.

I can't tell you what a pleasure it is to eat again. I missed enjoying food!

So, between my new found love of food and my ability to drive again, if you think you saw me in a drive-thru, you just might be right.

A Little Slow, But Getting It

2011-12-13T21:21:00.001-08:00

Tonight was the children's Christmas musical at Sacred Heart. I had four children perform Christmas songs with their classes, Tony for the first time.

This particular event I somewhat dread every year. Don't get me wrong, I love seeing my kids sing (and the other kids are fun to watch too), but it is so crowded in the church that I feel like kicking everyone around me before the show even starts. Parents with video cameras are elbowing each other out of the way for closer seats, some blatantly move people's belongings to take over their seats. This fight for seats really colors the event for me and I always give in and end up in the back rather than fighting this fight that upsets me so much.

Tonight, it seemed even worse than usual as people started pouring in before mass was even over. We were in the middle of a post-mass novena and people were talking as if they were in a sports arena. These are good people who lose a bit of themselves when fighting for territory. It brings us to our most animal state.

I never fought for seats before, especially front row seats, because I can hear just as well in the back and I am more comfortable not having any confrontations. It never occurred to me that the children cared one way or another as long as they knew I was in the building somewhere. Well, I learned something about that tonight.

My friend Brenda, who was front and center, made room for Jay and I to sit next to her and her husband tonight. Technically, the front section of the church is reserved for board members and their families and she is the president. Since I am not officially on the board this year, I didn't attempt to sit in the reserved section, so she made a point of dragging me up there. I felt guilty sitting in literally the best seat in the house and thought about declining. But I didn't, and I moved right up front where I was just a bit self conscious.

All that ended the minute the first Di Silvestri child walked up on the altar stairs and saw me in the front. One after another my four children beamed like the sun when they saw me in the front. And it suddenly occurred to me that sitting in the front wasn't a gift for me at all...it was a gift for my children who have had me miss far too many of their events this year. Why did it not occur to me how much it would mean to them to see me applauding and be close enough to see the love and enthusiasm on my face? Why did I only see this from my own perspective and not from theirs?

Next year, I will camp out to get as close as possible for my kids who love their mom and really don't want anything to happen to her. Sometimes I forget how scared they must be about all that is happening, and if seeing me in the front row at their Christmas concert makes them happy, then by all means I will join the throng of strategizers for good seats.

Happy Birthday, Natalie

2011-12-02T16:34:00.001-08:00

It's official. No more babies, no more toddlers. The baby of our family turned three yesterday. The day was marked by Dora, Dora and more Dora. From her tiara (pictured above) to a Dora jumper (turned out to be a bit tricky in hurricane speed winds intermittent throughout the day) to her Dora and friends cake, I do believe there was a clear theme to the day.

Low key, just our immediate and extended family (my natural reaction after our large Thanksgiving), I loved the day. She is such a funny and clever girl (says her braggart mother), quite articulate, and she loves to perform. Dance, cheer, tumble, whatever, as long as someone is watching her.

Natalie, you make me laugh everyday and delight me with your antics. Thank you, God, for the gift of Natalie. May I raise her to know and love you!

Happy Belated Thanksgiving

2011-11-27T16:19:00.001-08:00

So much to be thankful for...

My children and their health. My husband and his health and job. My parents and in-laws and their health. Our friends. Our home. Our church and school communities. Our football/cheer support system. My doctors. Our health insurance. Most of all, my faith, without which nothing makes sense.

Who knows what the next year brings for any of us? I, for one, am trying to treasure each day, each interaction with the people in my life. I am trying to worry less about how clean the house is and more about how I can please my family with little things, especially the most basic thing of all: my smile of delight when they walk in the house. I am appreciating the days I feel well and trying not to be frustrated and worried about the days I don't. (I am only experiencing marginal success with this one--I want to feel well NOW!)

My treatment plan going forward is relatively gentle, and I am also thankful for this. We are going to try Herceptin alone, both intrathecally (directly into my brain) and systemically (into my chest port) every three weeks. In addition, I will be taking Tykerb orally daily. If I continue to have trouble with nausea and vomiting, I will drop the Tykerb, but we are in the "see how it goes" period right now. I have had a lot of trouble with eating and hope that this will not continue for long. Imagine, ME, not finding food appealing! Unheard of. And unwelcome. Takes a lot of the fun out of life, let me tell you! At any rate, we will scan the brain again in February and see what things look like. Here's hoping there is nothing to be seen.

I hope you all had a blessed Thanksgiving. I am thankful, also, for all of you who read this blog!

Bittersweet

2011-11-20T21:03:00.000-08:00

Today officially ended our football/cheer season. As happy as I am that we play this sport as a family, I am always even happier to have the break that the end of the season brings.

I seem to be unique in this view within my family.

The end of the season, as it turns out, is an unhappy thing for just about everyone else in my family who mope around, feeling at odds around the house, wistfully tossing a football in the back yard. Worst of all is Jay for whom football is almost a required sanity. I will watch him, over the next few weeks (and I know this from experience) slip into a funk that will not end until about February. Now, of course he will still be cheerful and helpful and wonderful, but I will see through it. Every once in awhile he'll sigh and mention what a great season we had. Which is true.

Bella ended her gig as mascot to Lindsey's team with a lovely tribute from her team, as you can see above. She hammed it up in front of her very own banner and was completely adorable (says her mother). She was blessed to have a squad full of classy, mentor-worthy girls and amazing coaches who took her and formed her as a little cheerleader. We have been blessed again and again by our football league and we are so thankful for all the leadership and parents and players. We will miss you but July will come again soon enough! Enjoy your baseball season...thank goodness we don't play that.

This completes Joey's time in the Golden Valley Youth Football League. The next time he dons a jersey it will be for his high school. Scary. Lindsey and Sam will continue on and Tony will start next year, so I have about six months to recover before beginning again. It is definitely worth it, but a girl can look forward to a break, can't she?

Joey's team took home the Superbowl trophy last night (in the freezing cold, under the lights) in a high-scoring, take your breath away kind of a game. The team Lindsey and Bella cheer for also took home the trophy so everyone was happy.

Today was the cheer competition for the girls. I did not know if Bella would be brave enough to compete, but she did and she got her medal and was so proud of herself.

Lindsey's team had an amazing performance. I was sure they were going to take first place, but to my surprise they did not even place. Everyone thought that was odd, so the coaches asked for a score audit and found that they reason they had lost was that they were over time. The DJ was handed an MP3 with the exact time on it and he kept stopping and starting it instead of letting it run through, so they disqualified them. If the coaches had not stood up for the girls, we never would have known this. So, after filing a complaint with the league, Lindsey's team brought home the first place trophy. It is a beautiful day when all your children succeed at the same time!

I had a pretty strong week physically overall (with a few exceptions), so I made it to all of these events. I did more this weekend that I have in three months. And I am OK. Tired, but OK. Here's to doing more with the family, and a recovery of some kind, even if it is not as fast as I would like it to be!

Happy Thanksgiving week everyone!

Happy Cancerversary to Me

2011-11-16T21:37:00.000-08:00

Well, today it has been two years since I first heard the words, "invasive carcinoma". On Sunday it will be two years since I realized it was stage IV from the beginning. As of now it has been six months since I learned it found its way to the brain. Anniversaries everywhere.

While of course I am so grateful that I have had two years, one and a half of which were almost like living a normal life, the last six months have been very, very difficult. I never knew how debilitating it could be to be so ill, day after day, not being able to care for the basic needs of my family, to be on a chemical roller coaster, to be wondering where it is all going and how much more I can take. Even knowing it is the steroids that are pulling my master strings does not help me cope much some days.

I thank God for my faith without which none of this makes sense (and, truthfully, somehow it is hard to make sense of it even with faith some days--those days are the worst). I am praying hard for strength, energy, unwavering faith and long lasting health. But most of all a cheerful heart and a strong desire to serve God however he wants each day I have.

I could not have made it through these six months without my community of friends and family and the army of meal bringers and laundry helpers and drivers. I am so hopeful I will get better and I can drive again someday soon and sing again, but until them I am learning to accept my limitations, a valuable lesson I am sure.

I know for sure that I am a daughter of God and therefore worthy of basic human dignity whether I can get off the couch or not, but I sure feel more worthy when I can take care of the needs of my family.

So, here's to another two years (and more) with better strength, health, faith and resolve. My scans look good, so here's hoping! Brain lesions be gone and stay away! Liver, hold fast. Lungs, don't even think about it!

Oh, and leg clot? I am SOOOO over you. Go away.

The Next Battle in My War on Cancer

2011-11-11T15:13:00.000-08:00

After two or three lovely days at home, I am back in the Santa Monica UCLA Hospital for a few days.

This week I used my new Ommaya Reservoir three times. That is the port on my head that drips medication right into my brain and spinal cord. The Monday access worked very well. I experienced no problems or pain and the Herceptin began to do its job immediately.

I was supposed to receive a regular chemo called DepoCyt at the same time of the Herceptin but the Fed Ex did not arrive in time, so we rescheduled for Wednesday. I asked if we could skip the heavy doses of Decadron steroid that made me so miserable toward the end of the summer. He said OK and we would just go slow and watch me.

Big mistake on my part. My doctor knows more about cancer than I do.

About 2pm yesterday I spiked a fever of 101.8, developed chills and a massive headache, violent vomiting and steady nausea. That was 3 of 4 "go to the ER IMMEDIATELY" instructions on the DepoCyt, and by the time we arrived I had all 4. We called our doc and his staff verified, go because these are the same symptoms of Bacterial Menengitis which is REALLY bad. So, they immediately put me on high power antibiotics and are treatment as if I have the worst case scenario until the cultures come back showing otherwise.

I am coming to appreciate the hospital. I felt sicker than I have ever felt in my life yesterday afternoon/evening. As if I had the worst stomach flu you can imagine. That at least put me in a private room quickly because apparently vomiting people in the lobby is not an attractant for new patients. It's the little things that make unbearing situations more bearable. For instance, When we arrived in the ER I ran in and made a general announcement that I was about to vomit and could I please I have a pink bucket. People started running in different directions, the waiting patients starting turning away and covering their mouths. No pink tub was arriving regardless of the scurrying of so many, so I located the nearest triage room sink. About 3 nurses grabbed me and screamed, "Not in the sink!". They practically shoved my head inside the biohazard trash can and not a moment too soon. Needless to say, we found our way to an upstairs, private and fully admitted room in record time.

At any rate, our hope is I will be home by the end of the weekend, infection free, tolerating the Decadron, feeling as well as I am right now. As for future treatment, I am not sure of the details but I am certain I will be continuing Herceptin in both ports. As for the DepoCyt I hope I never again have to experience a time like today again. Today's MRI showed nearly the all the cancer in the brain is gone and now they are keeping an eye on only one receeding spot.

Keep up the prayers--they are working!

I'm Scary After All

2011-11-04T12:56:00.000-07:00

When the neurosurgeon changed my wound dressings this morning, I found 11 jagged metal staples in my head. Honestly? It's not my best look. But I feel oddly tough and confident I could hold my own in a bar brawl, so at least that's one less thing to worry about.

I am just sitting, feeling pretty good, waiting for transport to take me to the car. I can't wait to see my kids!!!

Not What I Expected

2011-11-02T22:11:00.000-07:00

I had imagined all sorts of things...a horn like a rhino's that the kids could play nerf rings on. An upside-down kiddie pool with a water collection feature in the sagging middle. At least some jagged staples giving me a partial, really-mean looking sneer-shaped facelift. I was really looking for some respect on the playground. Can't you just hear the 5th grade boys someday soon when I come to get my kids from school (God willing)? Mrs. D. is SOOOOOOO cool! Sam, can I come play at your house so I can get a better look at your mom's freakish head? Do you think she is one the characters from the Lightening Thief?

After all, folks, I had BRAIN surgery today. Some impressive evidence of this would be nice.

Well, color me disappointed in this regard. All I have to show for having had a hole the size of a drinking straw drilled into my head and a catheter threaded deep into the recesses of my brain today is a sweet little white piece of gauze delicately edged in blood. BOOOOORRRING!

Well, at least I have a shiny new button for my purse that reads, "I had brain surgery. What's your excuse?". This cheers me greatly in the absence of all the above. Because, after all, brain surgery is a really big deal (if it wasn't, we wouldn't have all those "It doesn't take a brain surgeon..." jokes), right?

Ok, ok....enough joking around about something so very serious. To recap, this week alone I have had my spinal cord punctured, fluid removed and replaced with extremely toxic chemo (no anesthesia whatsoever); an egg beater placed (and turned on, mind you) in my femoral vein, a filter threaded with wire down a vein in my neck and attached somewhere in my abdomen) to catch the pieces of blood clot loosened by the egg beater before they reached my lungs (twilight anesthesia--don't fall for it, there is no such thing); fasted, even from water and ice chips, on a queasy stomach, for two days in a row until 6pm as I waited for my surgery; endured ridiculous tights that deflate and inflate on each leg to prevent more blood clots; had my skull opened up for the express purpose of being able to bathe my brain in more toxic chemicals (though, blessedly, far less toxic than the methotrexate from the spine, since this one is for the long haul), and had a rough breathing tube shoved down my throat when all I want to do is start singing again.

Now, this may seem like a giant complaint (and I admit it kinda' is!). But the truth is that I came dangerously close to death at least several times in this last month...giant undetected blood clot, near starvation/dehydration, measurable new growth, though happily not too much, of the cancer in the brain in just 3 weeks...but scariest of all, the beginnings of my belief that I could not endure any more. I didn't think I could accept feeling so sick for much longer and was losing my will to fight. My family and your prayers are what pulled me through. I felt your love and support in such a tangible way that it got me out of bed for my nightmare-procedure-of-the-day rather than rolling over and drifting back to sleep where nothing hurts. You all reminded me to continue praying for myself, too, and so many of you came to help me do just that. You made sure I saw a priest, was anointed, received the Blessed Sacrament nearly every day I was in the hospital. You continued to bring meals and send cards, my kids' football/cheer organization created and sold "Rebels With a Cause" rubber arm bands and special shirts to benefit our family, and put the boys at every level in pink socks for the whole month. I am so grateful to you all for helping me to keep the faith, literally.

Now here I am, likely going home tomorrow, with every expectation of some extended period of good quality of life. Now, I am a realist. I know my statistics, but I am not a number and intrathecal administration of Herceptin is showing great promise and is still very new. I am on the forefront (again) of what our new medications can do and how they can be used. My particular flavor of cancer HATES Herceptin and I can't wait to send it a message tomorrow: we are not messing around and we are not backing down. (oh, yeah,and we're MAD too!)

Please continue to pray for my healing but also that my faith and will stays strong because to feel that waiver, even a tiny bit, is the scariest thing of all.

With much love, hope and gratitude,
Suzanne

Happy news!

2011-11-02T17:55:00.001-07:00

Hopefully, this will be my last update as guest blogger and Suzanne will be able to resume blogging very soon!

I went to visit Suzanne today and I am happy to report that she is doing wonderfully inside and out. This afternoon she finally had the procedure for the Ommaya reservoir. It was all done without a hitch and when she returned to her room she was awake and making jokes. The worst part of the whole thing was that they still won't let her eat or drink until they review the CT scan to make sure all is in place correctly. For the first time in weeks, she is hungry! The doctors finally found a medication to ease the nausea and she is busily reviewing her menu and anxiously awaiting the clearance to eat.

Tomorrow, she has a 10 am appointment with her oncologist who will then administer the herceptin infusion. After that, she is free!

The herceptin being administered straight into her brain will control, if not completely eliminate, the cancer that is residing there. With the cancer elsewhere already under control we are hoping that this is the beginning of a wonderful time of recovery. Praise God!!

A minor delay

2011-11-01T11:01:00.000-07:00

As you know from Suzanne's previous post, she was supposed to have her new port put in yesterday. However, there was a delay and she didn't have the procedure until this morning.
As of now, we are not positive when she will be having her first infusion of the Herceptin through her new port. We do know that it is against hospital policy to do the infusion while she is still an inpatient at the hospital. So, she will have to be discharged in order to go to the Westwood campus to have her infusion. After that, we will see. Will they simply send her home? Send her back to Santa Monica to be readmitted? Quite a few questions and not enough answers!!
Thank you all for the continued love, support, and prayers. When we learn the next steps I will do my best to post it here.

Just in Time for Halloween

2011-10-28T15:00:00.000-07:00

Well, here I am, still in Santa Monica Hospital. Things are...well...interesting!

If you will recall, I was originally admitted a week ago Monday for dehydration due to my near constant nausea and inability to keep food down (if I could even swallow it in the first place). I had become so weak that I was virtually unable to get out of bed and so disinterested in food that it seemed I might never eat again. I didn't realize how sick I was until I started rehydrating and getting a little food In.

As you have already heard, when I arrived we discovered a 6" or so blood clot in my left groin, stretching across my stomach, so we dealt with that first (see previous post). Meanwhile, still trying to get a handle on my nausea, we had been going through multiple anti-nausea drugs to try to find a combination that worked for me, we ran another brain MRI to see if anything new had developed since the last one on 10/3. The results were mixed. Biggest tumors still shrinking, little ones undetectable. However, there was some indication of development of leptomeningeal carcinoma, meaning thie cancer had spread to the Central Nervous System (CNS). This, of course, would not be a positive development.

To determine this, I received a spinal tap early last week. Not a fun procedure but more from a conceptual than a physical standpoint. I don't know about you, but I'd rather do just about anything than have someone puncture my spine. With no sedation.

Apparently, enough of my doctors were convinced that the cancer would show as present, given the images on the MRI, that they unanimously decided to inject a high-dose chemotherapy called methotrexate directly into the lumbar spine. You know, since they were there anyway. I slept 21hours immediately following.

Next morning come to find out that the spinal tap is negative (didn't see that one coming)! Docs still express confidence that it will eventually arrive so none considered this a wasted treatment. Now, after considering all the options, we have a treatment plan I think we can all live with. On Monday, they will be placing another port in my body. This one will be larger and stick out more. It will be attached right in the middle of my giant bald head so if anyone has some bolts for my neck I could have quite the hip Halloween Costume.

This is called an Ommaya Reservoir and will allow them to deliver Herceptin (which is the same drug I am already taking) directly to the CNS. Yes, it means carving some small portion of my skull to place It, but, hey, no more spinal taps. Yippee! And THEY will sedate you!

Before this Ommaya Reservoir, two more lumbar punctures at least were planned to confirm a positive result. I won't be missing those.

So next things next: we have relatively low (I hope)side effect treatment plan for the cancer which seems to be pretty much under control, both above and below the neck. Most reassuring to be sure is that we know we can directly get across the blood brain barrier if we go interthecally. Here's hoping for a good run on try Herceptin. And some quick and lasting help with the nausea !

Another update from your guest blogger

2011-10-25T12:36:00.000-07:00

Suzanne is still at the hospital so, yet again, I am stepping in to update everyone.

On Monday, Suzanne had a spinal tap to check for leptomeningeal carcinoma. Cancer in the meningeal fluid. We just got the results, which were negative. However, because of the extremely high rate of false negatives with this test, they will need to retest her again in a day or so. This would be an explanation for the nausea. The first step in treatment in a drug called methotrexate being added to the spinal fluid. While they were performing the spinal tap on Monday, they did start the treatment.

Today, she met with the doctor who previously performed the stereotactic radiation on her spine. He took a look at her scans and was very pleased with the results. The brain tumors have shrunk significantly and there is currently no need for any surgery.

As for the blood clot, it is still present. She has started PT and hopefully she will have some relief from that soon.

At this point, we are looking at about another week in the hospital. Please keep her and her family in your prayers.

On another note, life here in the DiSilvestri house is going along as normal as possible (CHAOTIC!!) and I had a funny story to share.
Trooper, the enormous mastiff, likes to greet people coming in the house with some sort of stuffed animal, shoe, or anything else he finds laying around. Yesterday, Natalie was preparing for Halloween and put on a Winnie the Pooh costume. She then fell asleep curled up on the couch. Someone knocked on the door and Trooper, in his excitement, picked Natalie up in his mouth. He promptly dropped her onto the floor where Natalie stayed, asleep, while we all laughed hysterically. Even through all the uncertainty and stress, we are finding some time to laugh.

More tests...

2011-10-22T16:18:00.000-07:00

Just a quick little post to keep you all up on the latest news.

Suzanne is eating a bit better today, though the nausea is still a major problem. We are still awaiting complete results on all the tests they have already run, and there is one more test planned for Monday.

As soon as we know anything more, I will post it here.

Thanks everyone and PLEASE continue to pray.

Finally, an update!

2011-10-21T11:38:00.000-07:00

Hello Raising Saints readers! My name is Briana and I am guest blogging for Suzanne right now. She is well aware that everyone is anxiously awaiting an update on her health and, as she is currently unable to successfully blog, she has asked me to temporarily step in.

So, the much awaited update: This last Monday, Suzanne was admitted to UCLA hospital in Santa Monica. She went in for a few reasons, mostly dehydration and extreme nausea that was keeping her from eating or drinking much of anything. Also on Monday morning she developed pain in her left leg/groin area. Jay took her to UCLA to see her oncologist and, after infusing her with fluids, it was agreed that Suzanne be admitted to the hospital. They discovered a large blood clot in her femoral vein.

She was finally admitted and transferred to the hospital in Santa Monica because that is where the oncologists who specialize in tumor/mass related cancers are based. She got a wonderful doctor who is very concerned about a number of things. Obviously, the blood clot is a high priority, but the nausea is also very concerning. At this point, they have tried nearly every anti-nausea medication to no avail.

On Tuesday afternoon, Suzanne underwent surgery for the blood clot. First, they placed an "umbrella" type filter to prevent any clots from passing into her lungs. Then, they used an egg-beater type device to go into the femoral vein to break up the clot. The first part of the surgery went extremely well and the filter is in place. The second part of the surgery was only partially successful. They were not able to break up the clot. They are unable to put her on any medications that would break up the clot because they could cause bleeding on her brain. For now, they are keeping her well hydrated and monitoring both the clot and the filter.

As for the nausea, they have ordered a number of tests, none of them showing anything yet. They did a new set of scans and so far no word on any abnormalities. The oncologist asked a gastroenterologist to see her to rule out any kind of physical GI problems. For now, we are just waiting, waiting, waiting. Waiting for tests to be run, waiting for results to come in, and mostly waiting for someone to figure out what is wrong so it can be fixed.

After spending time with her yesterday, I can happily report that she is actually more mentally coherent than she has been for a few weeks. She has some color in her cheeks again and we were able to spend some time talking and laughing. She is trying really hard to force food down because she knows that is going to be the key in her release. Throughout the day she was able to take a few bites of various foods here and there and keep them down.

She is getting excellent care. All the staff there have been so nice and helpful. None of us have any doubts that she is where she needs to be and that she is getting the best care possible.

On behalf of the DiSilvestri clan, I really want to say a great big thank you for all the help and support that has been offered. Our Sacred Heart community has been a beautiful example of true charity and we couldn't be more blessed to have such an incredible parish and school in our lives.
All the love and prayers are felt and greatly appreciated. Also a big thank you to the West Valley Rebels and all their support of our cheerleaders and football players. At this point there are too many people to personally thank, so please know that we are so grateful for all the meals, laundry help, chauffeuring help and general good wishes. Thank you all.

Our goal is to update here on a regular basis with the latest, accurate information on Suzanne.
So, tune in next time for the latest episode in Suzanne's journey.

Best Sleep I've Had In Years

2011-10-21T09:19:00.000-07:00

Yes, sir, right here at UCLA Santa Monica hospital where I have been a distinguished guest since Monday.

So, to all of you with unreturned phone calls thank yous or emails, overdue bills or forms, or anything else offensive, please forgive me because that's a pretty good excuse in my humble opinion. Plus, I was really, really sick for the week or two before I got here, so it has been awhile since I have been able to have anything close to a normal day. Now that the requisite apology (for something over which I am completely unable to control) is over, I can let you know what is going on.

I can't eat. Very little stays down, and getting a bite of anything in at all is at times agonizing. I am nauseous nearly all the time (after 7 pregnancies I KNOW nausea, and this is right up there with the worst I ever experienced with even Joey in the first 28 weeks which was really bad). Obviously, this is a problem which, if we don't get a rather quick handle on, could be very bad.

So, here I am, where so far they have threaded an eggbeater down my neck with wire (or was it inserted through the incision in the back of my knee? I am unsure). It was incredibly disconcerting when they turned on the egg beater and it felt like Magic Fingers on the INSIDE of the leg. Really, really strange. I begged them to take that twilight anesthesia and turn it into a drug-induced coma, but their need to communicate with me during the procedure unfortunately precluded this. Next, we tracked two cups of barium as they traveled down my gastrointestinal tract, taking pictures along the way like tourists riding down the Grand Canyon on donkeys. Then came the chest CT to check on the pneumonia which turned out to be of limited use due to my inability to keep down the contrast. Then came the brain MRI to see if any new or different metastases there are causing it. Certainly we are hoping it is not that.

In the meantime, we have been going through every anti nausea med known to mankind to see if we can find something that can stand it's ground against this beast of a nausea I have going on. Finally, yesterday we found one that worked and I ate nearly normally today. Great news and I don't remember feeling as well as I did today in months since I am fully hydrated, had good nutrition in me, took a shower and even walked a bit.

The doctors will come and talk to us tomorrow about test results, and I know I will be having at least one more not-fun test on Monday. I never expected to be in the hospital this long and the whole thing is a little scary (could not do this without faith and trust in God, as it's hard enough WITH those things!). Please continue to pray for me and my family, especially the kids who I miss so much and I know miss me too.

As always, I am thankful to those who have literally moved into our house so Jay can be with me during the scariest parts and the kids can still get to school and sports and all. You will all be happy, I'm sure, to see Briana is guest blogging so at least there will be information when I cannot post. It was so nice to spend time with Jay tonight as I muddled through some of my fears about death and dying, potentially leaving the kids, etc. We ended up playing Rack-O and had so much fun. That is the stuff life is about at the end of the day.

I am praying for a long life, to see my kids grow up and for a good quality of life, only recently of which I have become aware is critically Important to someone in cancer treatment. Some treatments are more than tolerable while some are simply brutal. The next few weeks will bring many decisions for Jay and me and my doctors as we decide how to treat the cancer going forward. God's will be done and may we make the best, most informed choices we can make!

Good Scans, Not So Good Health

2011-10-11T15:45:00.000-07:00

Sorry, once again, for taking so long to blog the news we have all been waiting for, but I have literally not been out of bed for days. I have been quite ill with pnemonia and unable to eat or drink much (luckily I have been "blessed" by a team of care givers who are making sure that I have consuming enough liquid and calories so that I don't require IV hydration and nutrients, but I must admit I am not making this easy on them, as nausea is my least favorite sensation and that is what anything that enters my body creates right now). But, it is nice to be cared for and I am doing my best to please everyone who loves me but sometimes I want to stomp my foot like a small child and say, "No more!"

At any rate, the brain and body scans came back as well as my doctor had hoped they would. All brain lesions have disappeared or shrunk substantially. The biggest of 11mm is now 6mm. There are no new lesions and everyone expects them to continue to shrink over time. We will check them every three months indefinitely and if they start to grow or change we will take a magic zapping wand to them individually but we are hopeful that they will just die on the sword where they are and that the Tykerb oral meds I am taking will simply keep them at bay.

The cancer outside of the brain also appears to be well controlled from neck to knee, so overall very good news out side of the pneumonia. This has been my first experience with pneumonia and I had no idea how painful it could be. I am trying to make it through one day at at time here, with seven or eight different medications that all make me nauseous but am hopeful that the meds are starting to kick in here, almost a week later. I can take a deeper breath today without screaming in pain and water tastes good for the first time in weeks. And, I'm blogging! Overdue, but doing it nonetheless!

So, once again, my apologies for making you wait for this this mostly wonderful news and bear with me as I make every effort to recover my strength and rejoin the world.

An Open Letter to Carnival Cruise Lines

2011-10-05T12:27:00.000-07:00

Please accept my heartfelt apologies for taking so long to blog after returning from our cruise more than a week ago. I unfortunately became quite ill after returning home (which I have now learned is not that uncommon for people following cruises, much less those who may be immunosuppressed as I have been from the steroids). I feel as though I have contracted some sort of sleeping sickness where all I do is sleep. Not bad in theory, but nonetheless, I would prefer to be awake for at least a few hours a day to keep a handle on what is going on around me.

I had a mini adventure yesterday to the urgent care as well when I woke up at 2am to discover I could not get a deep breath without alarming pain in my right lung and rib cage. An xray discovered no obvious cracks or splits, but I still cannot take in a deep breath and am unsure where this may have come from. Just one more thing to alarm those who love me with--sorry guys!

At any rate, now that this apology and explanation is behind me, I come to the real reason for this post: a letter to Carnival Cruise Lines.

* * * * *

Dear Carnival Cruise Lines,

We five old biddies (well, OK, four old biddies and Briana who really is still too young to counted as a biddie) had a great time on our cruise to Ensenada. We loved the boat, which was beautiful, we enjoyed the food (for the most part), we loved the little nooks and crannies all over the boat where we would find a quiet place to read. I can't remember ever laughing to hard in my life. My sides ached at the end of each day from laughing and as far as I can recall there is no better medicine than from-the-bottom-of-your-belly laughter like that. Thank you for a great birthday celebration.

I was particularly impressed by how well five adult women fit into the smallest cabin you have. I was convinced that we were going to only barely tolerate the accomodations but they were better than adequate. Nicely done!

Now, on to some other things...

From the minute we booked this cruise, months and months ago, I had been pestering your guest services department about whether or not there would be a priest on board to give mass on Sunday. We were to be at sea on Sunday and I have never, ever missed a Sunday mass since becoming Catholic in 1999. Plus, I was about to cause three fellow Catholics to miss their Sunday mass as well since I did not check out the mass situation before I booked. (I won't make THAT mistake again!). At any rate, it became evident as I checked with guest services one more time at departure that not only was there no priest on board, but there was also no generic religious service at all. Now, I have no idea how many people are on board a ship like this, but I was pretty sad that, given all the debauchery and gambling and half-dressed people running around that there couldn't be at least a small concession to those of us who would really really like to remember God on Sundays, because I know there must be more than just us five.

After praying for months that God would send a priest on board for us, my prayer was answered in a most unusual way. Hurricane Hillary appeared south of us on Saturday forcing cruise ships to juggle their positions and change their itineraries. Suddenly, we found ourselves at sea on Saturday and in port in Ensenada on Sunday. Yippee! We ended up going to mass at the Cathedral of Ensenada on Sunday and had a beautiful mass. I couldn't have planned that if I had tried! After two days on the boat, I was so relieved that I had nothing to do with getting a priest on that boat because the dress allowed was so offensive to me that I couldn't imagine a priest trying to avert his eyes from scantily clad person after scantily clad person. I was thrilled that my husband and children were not on that boat either, as it is not right for anyone to have to act like they aren't noticing that person in front of them in the buffet line who is wearing large patterned lace pants and NOTHING else. I had to move place in line. Carnival, I know you are the "fun ship" but please consider a basic dress code because everywhere I looked I was horrified. Do these young people (and worse, some of the older people) have no self-respect? I was embarrassed for them and had to resist the urge to run after people putting towels on them. Yikes! Our society has become such a "reality TV" culture where everyone is basically shouting "look at me!". Look at my clothes, or lack thereof, look at my tattoos and body piercings, look at how clever and funny I am when I drink too much, look at my put my hands all over this person's body who I just met tonight. Shudder.

On another note entirely, I would like to mention that your wheelchair accessibility was not stellar. The ramp lips were very difficult to navigate and many a time I was nearly dumped right out of my chair as we charged them to get me over the doorway humps. Just a thought.

So, Carnival, overall we had a great time and hope next time we sail with you we will do so under a classier dress code and improved wheelchair access. Also, we loved the comedian--so nice to have a family-friendly option.

Most Sincerely,

Suzanne Di Silvestri

It's A Good News/Bad News Kind of Thing

2011-09-20T23:48:00.000-07:00

The good news: my hair is making a real effort to grow back. Besides the wispy hairs busy sprouting here and there, it is rapidly growing itself a serious patch of real hair all in one place.

The bad news: it seems to think that the year is 1985 and is distinctly and determinedly growing itself from the base of the skull into a...mullet.

Seriously. Who could make this stuff up?

And what, pray tell, am I to do with this rebel hair growth? Allow and encourage it until I look like Billy Ray Cyrus, or take charge of that hair and let it know in no uncertain terms that until it decides to favor the entire head, it is simply not going to be allowed to continue. I must admit, I am unsure.

Ah, well. Just thought I'd share another item for you to file in your "things you never knew cancer patients had to think about" folder.

Rehabilitation

2011-09-20T05:53:00.000-07:00

I have decided it is time to start a slow but steady rehabilitation program here. Might work, might not, can't hurt, and can only help me feel like I am doing something positive to help my recovery along here.

Guess who figured out yesterday that she has a swimming pool in the back yard complete with a "therapeutic" spa built large enough for multiple children? That's right, me! I don't know why it did not occur to me before that water exercise is the absolute best kind for weak legs and weight issues. Probably because every time I get in the pool the kids mob me and it becomes a giant play fest, so I never associated the spa with anything peaceful and therapeutic at all. Well, that changed yesterday as I physically restrained the children in the house (with the help of two or three adults) and spent 30 minutes or so in toasty waters working those atrophied arms and legs. It felt great.

Similarly, as I prepare for Jennifer to leave, after two months of having her handle virtually everything for me, I spent time with my own calendar yesterday. That was way scarier. It took me a half hour, literally to plan two days of who needed to be where and who was taking them. I took copious notes, drove everyone around me crazy. I completely exhausted myself. But I did it. My calendar masters checked my work and I passed. But it was painful! Any rehabilitation program of mine, however, must include a mental aspect, so this is probably the most practical place to begin.

After, as I was floating in my "therapeutic spa" after my self designed physical therapy looking around at my yard and house, I was struck by how different everything looked since the last time I had been in the spa. I truly only get in the pool once or maybe twice a year, even though I like to swim, because I am always too busy and I really do think of it as just recreational for the kids. The last time I was in the spa I remember looking at our back porch and seeing how it needed paint, how the windows needed cleaning, how the potted plants weren't thriving, how I needed to change this or that about the house.

Yesterday, as I looked around I thought about how nice it was that we had such a large porch and sitting area, not to mention a pool for the children (and now me!) to use, I thought about how much fun we had picking out the now peeling (but potentially now "shabby chic" charming) planter jars when we were in Mexico. I thought about how nice the and green the grass looked and how great it was that I had had the energy the year before to switch the sprinklers out to water efficient ones that gave us this green lawn at a price we could afford! (I chose not to look at the vegetable garden at all, as a person can only come so far so fast.) I couldn't believe how critical I had been of the beautiful things around me only a few months earlier.

Clearly, rehabilitation is happening for me on three levels: physical, mental and attitudinal (is that a word?!). Three is a magic number, didn't you know?

40 Years Old!

2011-09-15T05:30:00.000-07:00

Wow. 40. It used to seem so old.

As it turns out, though, WHOOO HOOOO, I made it to 40, I made it to 40! Middle age? I don't THINK so! For me it is NOW, it is days with my family and friends. It is the gift of time which is ultimately our greatest treasure. May I spend every minute of mine wisely (and may you too, for that matter!).

Practically speaking , this year it was me getting my very favorite childhood cake and spaghetti casserole thanks to my dear friend who went to great lengths to make this happen for me (the cake traveled from our hometown of Carpinteria where several of her family members got involved, picked up and drove the cake from "our" bakery, down the coast and into the desert just for me). I felt pretty special about that. This is my same friend of 30+ years who has been here for nearly two months from Texas to take care of me. I will be lost when she leaves but so very blessed to have had this time with her. Who gets two months uninterrupted time as an adult with their friend like that? Great birthday gift--life gift!--for sure.

After three (three!) good days in a row physically, I had a bit of a slow day yesterday on my actual birthday. I was unable to go to lunch as planned or actually leave the house at all, but it didn't matter at all, as everyone was flexible, came to me and let me snooze on the couch as much as I needed to (which turned out to be most of the day). The kids brought me beautiful gifts that they had made or saved their money for and were so proud of, the best gifts ever. Overall, it was a great day, no matter how I felt.

Finally, and most indulgently, I have a brief cruise to look forward to next weekend to culminate this celebration of 40 years. I am going along with four friends for three nights on Carnival to Ensenada. Now, we booked this probably 9 months ago when things looked quite different for me physically. I may not be able to get off the boat in port and will be using a wheelchair onboard, but at this point it looks as if I will make it on the boat in the first place and that in itself is a victory for me right now. Park me on the Lido deck with a good book and an ocean breeze and I will be a very happy cruiser.

Thank you for all the birthday wishes. I never could have imagined how happy I would be to turn 40. Badge of honor, let me tell you.

A Dose of Reality (Just A Little One)

2011-09-11T20:32:00.000-07:00

It has been gently suggested to me that, although it is nice to be positive and upbeat about all that I am going through, that perhaps I have given at times an overly rosy picture of, or at very least glossed over the physical aspects of my current cancer treatments. Perhaps, this well meaning person suggested, I should let on a little more about what I am dealing with so as to "keep it real".

I have given this quite a bit of thought over the past few days. I have concluded that I write mostly positively because overwhelmingly that is how I feel spiritually, and how I feel spiritually guides all other aspects of my life. Further, I try very hard to not complain because unless complaining about something specific can actually cause the situation to change, I don't see that it does much besides bring me down. Having cancer is not fun, it is not something I chose, there is nothing I can do to change it, and all I can do is hope and pray for the best. Complaining about any aspect of this will add nothing positive to the equation.

Considering all this further, I began to think about what I want to read when I go to someone's blog that I care about. I want to know how they are really doing, truly doing, and I am also there seeking specific information about how I might be able to help them or, in the case of the cancer blog world, I might be looking for specific information about how they handled a side effect or how a particular medication affected them. I have definitely not given enough detail about any of the particulars of my treatment to be of any help to anyone who is searching for that kind of information, that has been invaluable to me from other bloggers who let me know if a particular symptom I am experiencing is normal. There are other forums for that, more medical in nature, but I have also benefited much from us regular bloggers just being real.

Given this now rambling thought process (and most of mine are now, sadly) I thought I would share a bit more about my physical symptoms since going through whole brain radiation. Let's be clear, though, that this is more of a reference list than anything else. You may not be interested (actually I would be surprised if you were) but I have concluded that I do owe all those who have fought this fight before me and those who will fight it after me an accurate assessment of what it feels like to go through this, at least for me. So here we go...

This is, by far, the most difficult thing I have ever faced physically and mentally in my life. I had no idea how hard, even when my doctor told me how hard it would be, that it would be this hard. The fatigue and weakness I have been experiencing is so intense that it is easy for me to understand why people, in different situations than I am in of course, say they would rather just skip treatment and let nature take its course. That was something I could never have understood before but now I get it. Don't worry, I am nowhere close to embracing that point of view for myself, I just simply understand it. I have way too much to live for!

Most of my physical issues, it seems, are tied to the nasty steroids I have to take to keep my brain from swelling. Long term steroid use is just plain unpleasant. We are trying to wean down the steroids but it is a process, particularly since I have several symptoms that tell us the brain is not done swelling. If the brain swells too much it could cause the kind of damage that would render pointless the types of complaints I have about the steroids themselves, so I am trying to keep that in perspective. But it is difficult to do, some days more than others. They won't be able to scan the brain for another month or so, so we are just guessing based on the symptoms I'm having as to whether a wean down is a good idea or not. Being more of a precision gal myself, this is frustrating.

If you have not seen me recently, you would be completely shocked at the change in my physical appearance. I look like a chipmunk. I'm not kidding. My face is round as the moon with multiple chins for decoration. I have gained 25 pounds in 6 weeks, mostly in my torso. That is the most uncomfortable part for me because I have little that fits my new body shape, and because it happened so fast that my skin is stretched so tight I am afraid I will tear myself if I turn too fast. It is as if I suddenly have to carry a giant bag of dog food strapped to me everywhere I go. This makes stairs particularly difficult.

I have become quite inactive due to the fatigue which is at great odds with the weight gain as you might imagine. My knees and legs, in particular, have become so weak that at times they do not hold me up at all and I need to just wait for awhile until I can get up. There is a vicious cycle here that must be broken, but since the steroid I am on mimics blood sugar issues I cannot stop eating enough to make a meaningful difference in weight loss until the dose goes down, as I begin to shake so badly that I cannot hold a cup without spilling or dropping it. That kind of shaking is so disconcerting and awful and only food stops it, so what do you do? You eat because it is scary to shake like your blood sugar is in the 60s when it really isn't.

The oral medication I am taking for my brain tumors (which, by the way, seems to have brought my tumor markers to an all time low of 16, so we are cheering that good news) likes to decorate the skin. I have had two different rashes from that, one itchy and thankfully mostly gone now, and another resembling infected spider bites on my arms and legs. Attractive? No. But not painful or itchy, so I am glad about that. In addition, it has given me the most extensive and long lasting case of acne I have ever enjoyed and that's saying a lot from me who never really outgrew my pimples in the first place. But, hey, at least no wrinkles at age 40 thanks to the chipmunk face, so that's something!

Luckily, vanity is not ruling my life right now. Rather, the drive to live to see my children grow up trumps what I look like, but I would be lying if I said it was easy to watch myself turn into Quasimodo in the span of a few weeks.

The entire right side of my body is largely numb, particularly my hand (luckily I am left handed) which has made for some difficulties in things like fixing the girls hair, tying bows, etc. It is very disconcerting but the doctors seem to think it will resolve as the swelling goes down. I hope so.

I have had some unusual infections, as the the immune compromised seem to get, such as oral thrush (common for babies, not adults), UTIs, sinus infection, eye infections, etc. Nothing too big, but all together one thing after another. Currently all gone, happily, but I have to be very careful with germs and this is rather difficult in our house as you might imagine.

Today I could not get into my big red van to go to church. I had to have two people push me in because my legs have become so weak that I cannot climb up. I have learned to be careful to not end up flat on my back as I end up doing I need help balancing in getting from one place to another and really can only do or go one place in an entire day. It takes all day to prepare to get me out of the house and to that one thing, whatever it might be, so that takes some choosing and planning. I so miss being able to drive myself places and just hop out to get the one thing I need at the store. I have lost my independence completely and that is sometimes the hardest thing of all.

Mentally, I am sometimes clear and sometimes I cannot string three words together. I wish I knew what made the difference from day to day but instead I wait for a good day and then rush to do the things I have been waiting for clarity on. On a bad stay I tend to scare those around me with my non-sensical statements and occasional slurring, although usually I know what I am trying to say, I just can't spit it out. I also get weepy and more than a little compulsive and repetitive on those days. Some days all I can do is sleep and some I cannot sleep at all. It tends to confuse the body.

I always try to do too much immediately when I am feeling well because I am so desperate to be useful to my family and to take the burden off the people who are doing everything for me right now. I am trying to be better about this but I get so excited that I get downright hostile with whoever tries to step between me and whatever I am wanting to attempt to accomplish. Something else to work on. Sigh.

Another difficult part for me is the confusion that my once fairly tightly-run calendar is causing me. I can no longer wake up and know what is going on for my family on a particular day, and it takes me quite some time, if ever, to figure out who needs to be where with who when and with what equipment and snacks. Now, I acknowledge that this is a difficult thing to do for a mother of seven WITHOUT brain issues, but nonetheless it is another sign of my no longer normal life that figures into the equation. I am so very blessed to have my friends who have made this a non issue for me, as people arrive to pick up and drop off and they seem to be getting everywhere they need to be. How wonderful.

Last, but certainly not least for me, is that I am no longer singing at church. As many of you long-time readers of this blog know, cantoring and singing at my church was, outside of my family and friends, my greatest joy. Yesterday the choir resumed singing after summer break and for the first time in 6 years I was not in the choir loft. (I absolutely loved hearing them from the pews and cried happily through my favorite musical parts of the mass, but I couldn't help mourn not participating). I suppose I am like an athlete out for the season...I have new sympathy for those watching from the sidelines. At this point, I am really unable to sing not just because I can't stand up for long or get up the choir loft stairs easily, but even more because my voice isn't working right. The radiation affected my ears, throat and mouth (gums, tongue) and I don't have any breath control (possibly due to the extra weight, not sure). I am going to start singing again every day to try to exercise all of this, as I was so inspired by the choir yesterday, but I was also reminded of how much I miss this part of my life. Hoping for a turn around here.

So, folks, there you have it. A more "realistic" and thorough accounting of my situation. I hope this did not come off as a giant complaint because, believe me, I am truly not complaining. Every day I am here with my family, every day I can get myself out of bed, every day I can show up for SOMETHING is a good day. Yes, I really, really wish I never got cancer. I wish cancer did not exist in this world. But seeing as it does, and I did and I do...I've got my faith and my family and my community and that's all that matters at the end of the day anyway. There's nothing sugar coated about that, I promise.

And, hey, now that you know all the things that are wrong with me, I can now easily let you know as they go away one by one and you will know what I'm talking about!

King of Our Castle

2011-09-07T14:51:00.001-07:00

Of all the gifts, of all the blessings, of all the joys in this life, none has been greater than my husband.

Man of character, humor, steadfastness, honor and faith, somehow you fell into my lap and I cannot believe how lucky I am. Thank you for your unwavering support, your flexibility and patience with this cancer craziness and all the fussing and changing of routine that it has brought. As difficult as this has been for all of us, it must burden you the most, but you rarely give a hint of this.

You have made me a far better person over the years. You brought me to my faith and for this I am most grateful. But most of all, thank you for being the best dad I could ever have hoped to have for my children. They are the most blessed of all.

Love you.

Fully Retreated

2011-09-05T06:59:00.000-07:00

I returned home last night from Northern California where I had the pleasure of attending my annual "silent" retreat. I had planned this, of course, months ago, before my health situation changed so dramatically and I had recently become unsure I would be able to attend. Yet, once again thanks to the help of my friends and family who made sure I would not only get there but would be well taken care of, I was able to go and I am so happy that I did. Thank you, I would be lost without you!

You may wonder why the silent part is in quotes. A truly silent retreat, I believe, is absolutely the best way to stay in contemplative prayer with God and hear what he has to say. However, I have yet to accomplish this practically so I always feel compelled to admit that I do not do a very good job of maintaining silence as I so love to discuss the things I am thinking about and learning...and when your roommates feel similarly it is quite difficult to keep things totally quiet up in the room. Perhaps I will do better with that in the future. And perhaps not.

But either way, I absolutely loved these few days away where I could sit in front of the blessed sacrament, listen to meditations on all kinds of topics, truly consider my future and that of my family, and just read. I was able to thoroughly think through things that concern me and come to peace with them. This retreat was completely different for me than any I have been on over the years simply because my life is so uncertain at the moment and I am processing things much more simply. This made for some powerful connections and moments of clarity that will keep me going for quite some time. (If I can remember them next week, of course...but I DID take notes so I can re-take this retreat every few days if need be!)

One of my favorite parts of this retreat was reading more about Bishop Don Alvaro, successor to St. Josemaria, founder of the Opus Dei. As many of you know, I have been requesting his intercession since my original diagnosis and remain completely hopeful that we can get our needed miracles aligned--his for ultimate canonization and mine for a complete cure and a long life to raise my family and serve my community. (For those of you unfamiliar with saints and canonization, saints become officially recognized, or canonized, by the Church when there becomes proof that they have obtained miracles here on earth for those who have asked them to intercede on their behalf. The day I was diagnosed I received a prayer card for Don Alvaro and have been asking for his help in heaven ever since.) God, of course, is the only one who heals and cures, but having those nearby him join you in asking for help is just like asking our friends here on earth to pray for us. The hope is that Don Alvaro is right there nearby so he can hear him really well.

At any rate, I learned through my reading that while the Rome headquarters of Opus Dei, called Villa Tevere, was being constructed in the 1960s, it was Don Alvaro's job to be sure that the workers got paid every Saturday. This was no small project, and the building forged on and continued on faith even when they had absolutely no idea from where the salary for the day would come from, sometimes even hours before these men were due their wages and their families waited to buy groceries. In the meantime, Don Alvaro struggled with his health, coupled with this great stress of providing from nothing, week after week. But somehow, every single week, he managed to find the money and pay each bricklayer, or to rearrange the debt in a way that could carry him to the following week with no one going hungry. This was never easy and in retrospect cannot even be understood really, but he did it and Villa Tevere was completed. It cheered me greatly to know that Don Alvaro just may be a last minute kind of guy, the kind that works best under pressure, so rather than becoming impatient to feel better NOW, as I am apt to do, I may just have to wait until Saturday to get paid, holding faith that somehow he will come up with that wage. It's hard to explain how much I enjoyed reading about this and applying it to my hopefully pending miracle.

And perhaps when I am healthy, I can go to Villa Tevere myself and visit the tomb of Don Alvaro to thank him. Sounds nice, eh?

Another thing I really enjoyed about this particular retreat was how much more comfortable I felt being there versus the first one or two times I went. The retreat center at Trumbull Manor is a beautiful old Victorian home, three stories with a big veranda and classic shutters. The outstanding food is served, silently as you listen to a tape, family style. You are truly pampered in surrounding and generous care but the first few times you are there, at least for me, I was overly concerned with protocol and spent a lot of time watching those around me for clues as to what I was supposed to be doing. This is naturally distracting to your purpose there and it is so much better to have a grip on how everything works and what is expected.

Many people sign up for a "job" or two as we live family style to keep things running. The first year I went, probably 8 years ago now, I was so nervous. I did not know anyone (so I was actually really silent) and didn't know how to ask about how some of the jobs were done, but I signed up for something I was sure I couldn't screw up: rising slightly early to open the big beautiful plantation shutters on the outside of the veranda and then close them as dusk approached. Well, that didn't work out so well for me. The first morning someone had beat me to it and I was horrified that I had failed to do my job and not sure if I should talk to someone and explain or stay silent. How insecure I was. But that wasn't all. That night, determined to not screw up again, I hovered in the living room until I was sure it was the right time to begin the shutter closing process. I raced outside, went to close the first heavy shutter and to my complete dismay had trouble with the hook and ended up ripping the entire shutter off the side of the house. What to do? TELL someone in my silence or wait for someone to notice? I had no idea and was so completely horrified that I was paralyzed.

As I sat on the veranda yesterday afternoon remembering this now fondly, I realize how much I have grown as a person, in faith, as a mother. I still have tons and tons to work on, but I am so encouraged that as we examine ourselves over time we can see that if we do begin each day anew, with a genuine desire to please God, we will. Miniscule steps, some even backwards, but all ultimately bringing me along to the better person I so want to be.

If you have not been on a retreat before, consider one. If you are too busy to even consider it, then I double insist. Without interior life we cannot become who we are meant to be.

Beautiful Milestones

2011-08-26T09:17:00.000-07:00

Hey! My baby isn't a baby anymore! She is potty trained all of a sudden. She can swim across the pool and take breaths in the middle (thank GOODNESS!). She even tells knock knock jokes, as you can see. Ones that make sense!

After 13 years I am done with diapers. High chairs. Cribs. I would certainly be mourning this at some level if I were not feeling so happy that my family is becoming more self-sufficient at a time when it really needs to be. What a relief it is to me that those who are helping with the children have less baby helping now, since that is so much more difficult physically. And how happy I am that my youngest and I can have conversations and read books that she will have more and more memories of to build on. It is a good thing.

Speaking of milestones, I too have been achieving some. Each day I am able to do a little more, viewed as a whole. I run the gamut from pretty good days to some still some fairly bad days, but overall am sleeping a little less and doing a little more. I have been able to make it downstairs each day this week to have breakfast with the kids before school. Today I even made their sandwiches...granted it took me nearly 40 minutes to accomplish this task that should take 5, but I am only slightly discouraged by this as I saw the pleasure the kids took in seeing me do this for them.

I have been able to have them read to me in the evenings as well and at least be near them as they do their homework (it is really, really sad how little I can help them right now. The most basic questions are stumping me and sometimes I can't even figure out what the actual assignment is even after reading the instructions. But I am sure this will get better over time.) I am definitely NOT smarter than a 5th grader right now!

The hardest part for me, besides the intense fatigue and useless feeling that goes along with that, is the shaking caused by the Decadron. My hands shake so much that it is difficult to type and text and write and hold things without spilling. I don't like it at all and hope that as the swelling goes down and I am able to taper off this steroid this side effect will soon be behind me. I tried to talk my way down on the Decadron at my infusion yesterday, but the persistent numbness on the right side of my body and some visual disturbances I have been experiencing are telling my docs that the swelling is not yet abating (which is not alarming or unusual at this stage, so don't worry) so I cannot yet cut back the Decadron. So, for a few more weeks at least I will continue to cry too easily, likely gain a little more weight which I can hopefully get rid of later, but rest assured that I am doing what I need to do to get better and stronger for my family right now.

This is also been a time of great blessings for me as I have had lots of time to rest and pray and spend with friends I haven't seen in far too long. My dear friend Jennifer flew out from Texas to be with me for nearly all of August and September and I am so, so happy to have her with me. Local friends, grandparents and neighbors are here every day too, filling in on groceries, rides, just playing with the kids or taking them out or swimming with them or helping with homework. The generous and amazing meals keep coming and are SOOOOO appreciated. I could not live enough lifetimes to pay forward the charity and goodness that have descended on my family. You have all taught me so much about being the hands of Christ on this earth. No one wants to be sick, but if you've gotta be sick, this is the way to do it. We have more help right now than we need which is amazing when you think about a family of nine with six children in three schools and football/cheer season going on to boot. Good thing since this will be a marathon rather than a sprint for us it seems, so it is nice to spread things out over many people and much time.

At any rate, just thought I'd post to let you know that I am slowly making some strides, I maintain my good cheer and strong faith completely and that I could not be more humbled and grateful for all of you.

By the way, if you found Natalie's joke totally unintelligable, here is the transcript:

Knock Knock

Who's There?

(Natalie says something unclear so Jay says start over)

Knock Knock

Who's There?

Boo.

Boo Who?

Don't cry, it's just a joke!

Looks Like It's All in My Head

2011-08-19T05:18:00.001-07:00

And believe me, this is a good thing!

I got the results of the whole body PET/CT scans I had done last week, the first ones I've had since May, and they are literally the cleanest, nicest scans I've ever had. No evidence of cancer in liver, lungs, abdomen, or any other major organ. Even the bones are quiet and well controlled, though there are some lesions on my thoracic spine that could wake up at some point. For now they are dormant, and behaving and there is absolutely nothing of concern going on anywhere in my body except for my brain. Which, although clearly not insignificant, is way, way better than trying to fight a multi-front war. This is really great news.

That means the yucky I am feeling is mostly from the strong steroids that are keeping the brain swelling down while things heal, so I can most definitely take that for a few more months. It is so nice to know it is a medication side effect rather than new cancer growth. I am definitely NOT a fan of the steroid as it makes me bloat and swell and get really hungry, weak and weepy. It also disturbs my sleep patterns, but again, this is a small price to pay to keep the brain from swelling too much and pressing on the skull, which is even less pleasant since that gives me headaches and keeps the right side of my body very much on the disconcertingly numb side.

I will remain on Herceptin infusions every 3 weeks (which have very few side effects, similar to my previous trial drug T-DM1) and I take the targeted biological therapy oral medication called Tykerb every day. This is causing me a few side effects but has a molecule small enough to cross the blood brain barrier, so this is really the workhorse that is attacking those cancer cells in the brain for me right now. The Herceptin (along with the Tykerb too) is what is keeping things controlled below the neck. These two drugs are pretty amazing in that they work together to clamp down both sides of the HER2 protein that makes my particular cancer so aggressive. The Tykerb gets inside the cell and attacks from the bottom while the Herceptin takes care of the one that floats outside of the cell and caps it in a way that tells it to quit producing. I may have oversimplified the chemistry of this a tad, but at least it gives you an idea of what is going on.

The truly amazing thing about all of this is that, to date, I have STILL not had any general chemotherapy. At all. Or hormonal therapies. I have only been on targeted therapies have have found and killed my particular cancer cells and I think this is pretty amazing. Right now it is the effect of the brain radiation that is keeping me laid up, not the drugs (excepting of course the steroid which WILL be reduced over time) and I am pretty amazed by this. When needed, I have quite a number of drugs, including these two entire classes of chemos and hormonals, to throw at anything unpleasant that decides to come my way, so I am pretty happy with where I am sitting and so proud of all those cancer researchers who have figured out that you don't have to kill a ton of healthy cells to get at the cancerous ones, at least right away. You are buying me precious time with my family and I am so very grateful.

As always, thanks be to God and to all of you who are so faithfully praying for me. It is nice to share some good news. Next scans...November. So for now? We wait in hope!

Accomplishment of the Week

2011-08-18T04:57:00.000-07:00

First day of School at Sacred Heart!

Particularly, I was able to see Tony to his first day of Kindergarten on Monday. I wasn't sure if I could gear up for it, but with lots of help I made it and I am so happy I did.

I am very blessed in neighbors and family and friends who can drive my kids to and from school every day, thank goodness, as I never anticipated I would ever not be able to drive myself somewhere for any significant period of time, but these past two weeks I have been so weak and fatigued that getting out of the house, for even an hour or so, takes many hours of prep and recovery and there are days it simply cannot be done without putting so much of a burden on everyone around me that I have to pick and choose carefully. I think I chose well how I spent my energy this day, though!

This year Joey began eighth grade at Joe Walker Middle School (not pictured, as he started a week earlier and is really too cool for first day photos anyway--but don't worry...football is upon us and I will have plenty to post once his game action shots start coming in). He is already having a great year and I am so proud of the person he is growing into.

Lindsey officially began Jr. High as a sixth grader (gulp...I have reverted to using her kindergarten photo bookmark in my bible just so I can cope with this). Sam is a 5th grader and Julia is a 3rd grader. They all have great teachers and are in a small, supportive environment just perfect for what we are all going through right now. I feel nothing but blessed to see them go and come home happy every day this week.

Because Tony is a summer birthday, last year we chose to send him for a year of Kindergarten to our local public school first and I am so glad we did that. He marched into his class on Monday totally with the program, comfortable with the classroom and confident going in. He probably would have done fine going straight in a year ago but especially given recent circumstances around here I am glad for his extra confidence and hope it sticks with him as he moves through the grades. Plus, he is now in the same class with his three good friends (read: sons of MY good friends which as any mom knows is invaluable in the classroom for helpful reminders throughout the school year!).

I am grateful for our schools and our community, but most of all I am blessed beyond belief that I am here when they get home to greet them, sign their assignment books, listen to what they are learning about and who they are sitting next to and who is new this year in their classes. They don't seem to care that most days this week I am still in my pajamas when they get home, sometimes not even having made it downstairs a single time (I try to save my big push for dinner). They just trickle up and visit and it is the most precious thing. I would say hooray for the small things, but this is not small. It is HUGE. Every single day.

Warning: Photo of a Bald Lady Coming Up!

2011-08-13T05:32:00.000-07:00

Now's your chance to look away if you would rather not be left with this image, but I've gotta tell you I'm feeling pretty good about it all, so I don't mind at all if you take a look!

Not that I would ever choose to become bald, as someone who has always had a fairly good relationship with her hair and always enjoyed wearing it long and braiding it and playing with its color, etc. Nonetheless, I'm going to go ahead and say that hair just might be overrated a tad, particularly when you are dealing with big life issues that leave less time for fuss.

When I am around others I cover my head with a scarf or a hat, but when it's just me I am feeling great just letting it all out. Thankfully, it is summer, and it is so cool when I am hot! My shower takes 2 minutes for the first time in my life (which is a really good thing let me tell you since my legs don't hold me up right now much longer than that anyway). I have this wonderful cream to help with the radiation burn (which, thankfully, I did not get very badly) and it makes my head soft like a baby's.

The top is just a bit fuzzy like when my sons get their first really short football crew cut of the season. As they have gotten older, they have lost all patience with me for rubbing the tops of those new cuts, so now I can sit here and pat my own soft fuzzy top whenever I feel like it! And as an added bonus, with my newly expanded stomach I can practice rubbing my belly and patting my head at the same time! (For those of you genuinely concerned about my mental status, don't worry...I don't actually do the belly part, I just couldn't resist the idea).

I love my pretty scarves and look forward to choosing one for the day. I even have a "cranial prosthesis" (OK, wig, but doesn't it sound so much fancier to say it the other way? My insurance company seems to think so) that I have not worn yet that I am looking forward to that is just different enough from my old hair that I am going to feel like a mystery woman when I put it on. When it is cooler.

But the very, very best thing about not having hair for the moment is not having to ever know where the hairbrush is. As a mother of four daughters, no amount of threats, punishments, complex hiding schemes (I even contemplated wiring it to the bathroom wall) had consistently kept my girls from stealing my hairbrush when they really, really needed it quickly. Like every day before school. I have been left post shower so many hours of my life desperately searching for my brush before my hair mats down for the day that I now literally leave the bathroom in a gleeful dance for not having to perform this ritual.

The few times recently that the girls have come in to me frantically asking where the brush is (considering, of course, that they have been amply supplied and resupplied with their own hair products), I have enjoyed such genuine, carefree laughter (and it really IS more fun to laugh when you have a Santa sized belly) that this alone has been nearly worth it all. Girls, figure out where your own darned hairbrushes are and devise a system to not lose them ever again. I feel change-a-coming, I do, I do!

So for now, happy bald! I've got a lot a work with.

The Dignity of Human Life--I've Still Got It!

2011-08-11T03:01:00.000-07:00

Human life is precious. From conception to natural death, in all its forms. Healthy, weak, strong or not, there is value in it all. I have always believed this and do not waver from this now.

I have friends with special needs children who have been more blessed than they could have ever imagined by these amazing souls, simple and close to God. I can clearly see how any of us who care for those weaker around us makes us all less selfish and closer to the people we are supposed to be. (And, yes, that definitely counts all "regular" parents--sometimes that is the very hardest thing to do!)

That being said, things certainly do change perspective for a person when she shifts from being the care giver to the care receiver. It is much easier to be the strong one, caring for your family, in control of your own life. When you are suddenly the resource sucker you may find yourself slowing down a bit to contemplate and reconfigure your value in this whole equation!

So, that is what I have done. Reconfigured my value a bit for the time being, and I'm finding, like anything, that's not such a bad thing...it just depends on how you look at it.

At the moment, I sleep and eat, am given my meds regularly by those caring for me, and get driven to medical appointments. Not a lot of value in that on the surface to be sure. In addition, my friends and family are taking care of my seven children, including all things relating to start of school and the football/cheer season (no small amount of details there) and the mountains of food and laundry that go with a family of nine. I cannot be left alone right now, so this takes several people on any given day. I never imagined when I had seven children that I would be unable to care for them myself before they were grown. Humbling to be sure.

On the bright side, however, I have never been more available (snoozing aside) to listen to them read to me, or take a nap right alongside Natalie. They know just where to find me when they want to tell me about something that happened to them. And they are having a ball holding tea parties in my honor and bringing me food trays that I am not too busy to receive and participate in. For perhaps the first time in their lives I am a more or less captive audience to them (again, snoozing aside) and I am loving their visits throughout the day. Definitely value in that.

There is also a great deal of value in my having to get out of the way and let my children do some things for themselves. This month they have all learned new skills in the kitchen and laundry, and Natalie even potty trained and learned to swim across the pool with so many adults around watching and helping. How wonderful!

Best of all, though, is the quiet, contemplative time I have now (when I can stay awake, that is) to pray or read or think about things I could not fit in my brain before. Nothing I'm going to change the world with here, but time that I think will change me and my perspectives on life for the better. Time that has me plotting how to be a better, more charitable person when I make it through this difficult time. Good stuff, to be sure.

So, when you see me now, formerly strong and now so weak, do not pity me or feel uncomfortable or unsure of what to say. I am still me, 100%, inside this hopefully temporarily failing body. I am still contributing in my own way. I am here to smile at my children and hear about my husband's day, and to pray for any intentions you may have as well. So let me know what they are!

It is very tempting to imagine, especially in our work-valued society (and indeed we ARE meant to work as humans, work is good and right for us) that once we cannot work we are useless. But if allow ourselves, our non-working times can be our time to become the decorations in the hallways of those still working so hard to enjoy.

Happy 10th Birthday, Sam!

2011-08-07T19:27:00.000-07:00

Happy, happy birthday to our sweet Sam. Child of light, child of joy...child an entire decade old now! How did that happen?

Sam, you are a true gift from God not just for our family but to all. You are so funny and sweet and kind, always generous and thinking of others and what they might need. You are self-sufficient, independent and just plain fun to be around. You are a great joke teller and always know just what to say to lighten our moods and make us laugh. You are an amazing brother to your siblings and are always so willing to help out the little ones.

May God bless you richly always. You are one super-loved child!

The Graduate

2011-08-04T19:29:00.000-07:00

I did it! 20 sessions of daily Whole Brain Radiation are behind me and I am so happy. I do not have to go back to the doctor for three whole weeks. I am so relieved and joyful!

I will be honest. I was not sure I was going to make it through this. I have been blessed with good health most of my life. Pregnancy after pregnancy, along with a year and half with Stage IV cancer, did not even begin to teach me what "sick"really meant until this month. The sick that leaves you feeling like you no longer have any control over your body or your mind, the kind that makes you realize, with complete clarity, your mortality. The kind that makes you understand that we are all completely reliant on our friends and family, ultimately, to care for us when we have reached a state when we are entirely unable to do so for ourselves. Truly humbling, life-changing, sick. I get it now, and I respect it. Cancer is not for wimps, no sirree.

But this wimp is stirring and oh-so-ready to start feeling healthy again. They have officially stopped shooting poison in my brain and I am about to enter a period of 3-4 months of healing here, where we wait while my brain stops swelling and we can get a better idea of how this treatment worked. We will know in November. By all accounts my great fatigue and inability to process things like a normal human being will continue for several months here while my body recovers from the great insult it has received, but I am completely hopeful that little by little I will return to strength here.

I am physically broken in the sense that I am very easily overwhelmed by conversations and needing to track details of things. I have little short term memory right now and cannot walk or stand for more than a few minutes without becoming too weak. I am bloated and swollen, bald and fuzzy but so very grateful to be alive and here with my family. I am enjoying what I can only describe as one of the most blessed times in my life as my friends and family have come from all over to feed me and care for me and make me laugh at all the wonderful things around me. My spiritual life is strong and I am filled with hope for the future, no matter what may come.

Just a little update for you all...I believe positive things are on the horizon!

Advice You Will Hopefully Never Need But I Give You Anyway

2011-07-30T15:47:00.001-07:00

Should you ever find yourself in the position of having PROMISED to take your 4 year old daughter and six year old son to Disneyland before end of summer, and this promise was made just days before you discovered that your entire life was about to be turned upside down medically, I have some advice for you.

Do it.

No matter how awful you feel. No matter how humbling it might be to be pushed through the park, bald in a wheelchair at age 39. No matter how difficult it was to even get out of bed for five minutes the next day. Because you know what? Tony and Bella have a picture of their mom, scarf and all, coming down Splash Mountain with them that may have cost me an awful lot physically but will pay off in spades in some photo album somewhere until the end of time.

While I'm giving advice on this matter, I cannot fail to caution you in a few areas. If you happen to be going through whole brain radiation at the time (and I certainly hope you will not be!), do not, under any circumstances, no matter how neat your little handicap pass that gets you right to the front of the 90 minute line may seem to be, get on Star Tours in 3D. This is simply too much for the newly radiated brain to take.

Furthermore, do not go anywhere near Toon Town, particularly that blasted Roger Rabbit Spinning Ride thing. It almost killed me.

Stick with things like It's A Small World, once thought by me to be the most boring, repetitive ride in the park. A little brain alteration makes it the most soothing place on the earth, let me tell you. Similarly, Pirates of the Caribbean is just long enough for a nice nap and just dark enough so the kids did not seem to notice, and even a little drool on the shirt passed for some pirate war splash. It was great!

Disneyland is really very good at accommodating guests with special needs and I really appreciated their support in fulfilling this promise to my children. There was little I could think of that I want to do less than go there yesterday and it will take me literally days to recover from it, but aside from the few pitfalls noted above, I am going to give it a two thumbs up recommendation. Especially since no one told me (and I was braced for it all day given my bloated belly) that, sorry, expectant ladies could not ride. I might have gone a tad postal at that but happily did not need to experience it.

Make every minute count with your kids, because there is no way you will ever regret that. It's my advice and I'm sticking with it!

Plugging Along

2011-07-26T18:55:00.000-07:00

Just a note to let you know I am still here, taking things one day at a time.

I have been unbelievably blessed to live 18 months as a stage IV cancer patient with very few side effects from treatment, a good response, and maintenance of a normal life as long as I have been able to do this. So many are not as lucky as I have been thus far.

It was inevitable that I would eventually become a real cancer patient, with real effects from treatment, and that is where I am at least for now. As it turns out, when they shoot megawatts of radiation directly into your brain for days on end, things stop behaving perfectly in your body. But as long as those cancer cells are dying, we are good with this.

So for now, I am bald, remarkably bloated, totally fatigued, covered from head to toe with an itchy rash and slightly on this "sloooooow" side (which, is an oddly refreshing break from trying to be on top of things all the time), but am so hopeful that this shall pass into a successfully treated round of brain mets in a few months and that things will improve across the board.

In the meanwhile, what a blessing meals, help with kids, and people keeping me company through all of this has been. It's really, truly, not. that. bad. I can do this! And you are all helping me to do so with great cheer. God bless you all!

More Fun with Cancer

2011-07-22T05:47:00.000-07:00

OK, folks, today promises to be a very challenging day for me on a number of levels so I giving you some specifics to share along with me today. Cheer me on, rally me home, 'cuz I know it will go better for me if you are all behind me!

First of all, much of my hair fell out last night. There is still enough there that I will have to do something about it today, either continue sloughing it off or just shave it already, because the sporadic pink (no, I'm not really sure why they are pink, they just have a pinkish tint to them) tufts are beyond disturbing.

You know, when you contemplate the actual losing of your hair, you don't really consider the actual moments of when it is physically dropping off your head. You think of how chic you might look if you happen to have an attractive scalp and how bold you may be in proclaiming bald as beautiful with scarves and shiny oil, but you don't really ever think of how each of those hundreds of thousands of individual hairs are going to come detached from your head and how that prolonged separation might affect you.

Once you notice the tufts dropping, do you help them along? Ignore them in hopes that they'll hang on a few more days? And how to do this while hoping your kids (and worse their teenage friends) don't get scarred for life?

Well, I have no answers, folks, but I will share what worked for me rather peacefully last night. I put on the Sound of Music, darkened the room and de-tuffted into a giant pile while I sang my way happily thorough "My Favorite Things", "Do Rey Me", and "I Am Sixteen Going on Seventeen". By the time we got to the puppet show, about 60% of my hair was in a pile, I looked a little like a crazed Jack Nicholson in the Cukoo's Nest with my hand madly running through my hair and an insane look in my eye, but it was painless for me and the kids didn't notice a thing except my cheerful and likely irritating singing, which they are totally used to anyway. So, probably not your most conventional method, but worked for me. By the time I had removed all I could for the evening I had my night cap in place and all was well.

As for the remaining tufts, I will see what to do. Shaving concerns me a little because of the radiation irritation on the scalp, but we shall see. I believe there is a specialist at the wig store at UCLA who can help me break through to the other side successfully.

On another note entirely, something has gone terrible wacky in my stomach over the last few days. For no clear reason, my abdomen has distended (and I mean really distended--I look like I am ready to give birth any minute to a full term baby which happened to grow in the span of about 40 hours). My children were astounded, thinking they were suddenly getting a sibling, no joke. This is not a normal side effect of the brain radiation or the medications I am on as far as the two doctors who have seen me in the last two days can ascertain, so I get to go to the hospital today for pokes and prods and scans to see what the heck is going on in there before I actually pop.

Could be fluid, could be blockage of some sort, we shall see. I am not in any pain, and it is a good thing I am so used to looking and feeling pregnant because I am just going with it. What else can one do? The waddle, once you've had it, never leaves you, it turns out!

Nonetheless, I can't imagine there is any really good or positive reason that this is happening, so I give this to you, along with my balding woes, to think good thoughts for me and say more prayers that this will all go well so I can get back to the business of cheerfully spending time with my family rather than doctors (who really can be great, but enough already, OK?).

Wish me luck, and I'll keep you posted.

Peace

2011-07-21T17:08:00.001-07:00

I thought I would just take a moment to let you know how very peaceful I am, in the midst of all of this craziness. Maybe it will help those of you who are worried about me feel better too.

There is no doubt that this is exceedingly difficult on me physically right now, but as long as my peace is in tact, anything can be faced with complete joy. Even this.

The only component required for peace on earth, I've learned, is to do your very best to be right with God. I know many of you who read this blog are not particularly religious, but please indulge me on this occasion, as my faith is such an integral part of this journey for me and I cannot leave this part out any more than any of the medical particulars.

As a convert, it has taken a long time for me to become a fan of confession. I believe God is a loving and merciful God who did not create any of us to do anything other than love us. If we come to him contritely when we have gone astray, he is our father and will always run to us in love, ready to forgive us. I did not always believe this needed to happen inside of a confessional and indeed I believe it happens many times outside of one as well.

But I am now thoroughly convinced that Confession (Reconcilliation) is an actual, real Sacrament, filled with tangible graces that offers a real life encounter with Christ himself. There is no substitute for this, especially when you are at a place in your life where you are uncertain as how much time you may have to make up for things you have not done as well as you would have liked.

Last week I had the most cleansing confession I've ever had. It left me with a completely clean heart and total peace ever since. I wish I had done it years ago. For years now, I have gone fairly regularly to confession and got out all the usual goop that tends to bog us down. But this time, I went back to my first general confession and went over things again from my youth that I know and understand were completely and technically forgiven the first time I confessed them. But in recent months I would remember a few things that I didn't say at the time or wish that I had said them better. So, I decided what better time than the present to clean the slate.

I just said it all. Everything I have ever regretted doing in my life, all out there, all embarrassing, all so unimportant now that I gave it all up. I was not talking to the priest (though I was), I was talking to God himself and I left knowing that I am absolutely forgiven and I have done everything I can do to make things right. Wow, what a great feeling.

After the priest reminded me kindly to now really, truly let these things go, I have. I am ready for whatever comes and with such peace in my heart.

Don't worry, folks, I am not preparing for my imminent demise or anything, I am just getting my soul in order so I can focus on what is the really important part of living--moving forward without regret or fear.

I know this is a very personal thing to share with you all and I hope I have not been too frank. I just thought some of you might be happy to know that real peace exists, no matter what is going on in your life. God will provide it upon request, and you don't need to wait for a terminal illness to go get it!

And for those of you who think I'm totally nuts...I promise I'll get back to medical stuff and fun kid stories tomorrow. :-)

Going, But Not Yet Gone

2011-07-16T18:10:00.000-07:00

Here it is: the interim short cut, intended to make the falling out of gobs of hair easier to take.

Most of the kids hate it, but I am surprised by how much I like it, considering I have never worn my hair short. It is certainly easy--but not as easy as it will be in a few days when I will no longer require hair products of any kind! (That is oddly refreshing to consider... and lets you know exactly how far from myself I actually am right now!)

Stay tuned for new photos in a few days...if I can bear to post them. :-) Hey, it's just hair, right?!

Perfect Day

2011-07-14T07:28:00.000-07:00

One of the great gifts of a very serious illness is the instant ability it gives you to figure out what is important. This is the second time I am receiving this gift. The first time, at my diagnosis a year and a half ago, I held on to it for awhile, but as I got better and more comfortable with life as usual, I began to forget. I somehow don't think that will happen again.

Yesterday after my brain zap my family loaded itself up into our giant van, picked up some dear friends and their kids and drove to Santa Barbara where we met some more dear friends and their kids and spent the whole day on the beach. The grown ups chatted (well, truth be told, I mostly slept in the sand with my head on Bella's giant dolphin stuffed animal but that worked very well for me) and the kids played in the water and the waves with each other all day until they were completely spent.

Around 6pm the real dolphins came out and swam back and forth, right next to the beach. We were mesmerized by their grace and simplicity, and I was completely happy there with my family and friends. I'm so happy Jay was able to take this week off to be with me and help me adjust. What a blessing.

Not for Wimps

2011-07-13T09:02:00.001-07:00

No sirree, this cancer in the brain business is not for the faint of heart.

This is just a quick post to let you know I am here and surviving, albeit very strangely for me. Please bear with the syntax errors and nonsensical statements that are sure to come, as I am struggling mightily to keep my wits about me. The best way to describe how I am feeling right now is as a very drunk person who is trying hard to be extra careful about how she moves and speaks so no one will know exactly how altered she is (not that I have any past experience with this from my college days or anything). I am in a mental fog that makes me feel slow, stupid and extremely frustrated and my physical dexterity has suffered greatly. Typing and texting (!) have become very difficult and I am very easily overwhelmed by too much information or decisions. For a multi-tasker like me this is very hard to take. I just know there is still a smart person here inside just waiting to break out again when all this is over.

The good news is plenty--I have now begun all treatments (Whole Brain Radiation, Tykerb--the medicine for HER2+ cancer that crosses the blood-brain barrier, Herceptin to manage the currently stable disease below the neck, and Decadron for the brain swelling that is causing most of my physical symptoms like numbness, headaches and balance issues). All the darts are now being thrown, so all I have to do now is survive the intense fatigue and stomach upset that comes with this cocktail. In four months we will scan the brain and see how we are doing. Until then, I just try to stay awake as much as I can and have quasi-intelligent conversations where I can.

So far, the Decadron is the worst, as it makes me extremely emotional and I am trying to not alarm people with massive mood swings. My oncologist warned me about this and told me the story of an really tough NFL player he recently treated for a brain tumor who required Decadron. After the medication he became emotional and weepy. He said the personality transformation he went through was positively stunning, but that ultimately he became a much nicer person. So maybe that will happen to me too!

For someone in my situation, my prognosis is a good as can be hoped for and there is a reasonable chance we can eliminate these lesions from my brain by the end of the year. Even if we can keep them stable or shrink them a little that is also good. So, I am praying fervently for the complete miracle, while filled with gratitude for my community that has surrounded me and my family. I will not be myself for awhile, so please bear with me and know that I am fighting the good fight and not losing heart or faith in any way.

I am beyond grateful for your support and prayers.

Finally, to those of you who have been so kind to send notes and other things, I want to thank you and let you know that I am not in a position to be able to personally respond to these things right now, but know I am receiving them and am truly grateful for your thoughtfulness.

The Good Kind of Drama

2011-07-09T07:40:00.000-07:00

The best drama in my life comes from Bella.

After independently completing her shower, where she used copious amounts of soap that didn't quite get rinsed out of sensitive areas, she experienced an unpleasant burning that made her cry. I explained that all she needed to do was rinse and pee and then all would be well. Rather than following this time-tested and sure-to-succeed advice, she chose instead to crumple to the floor and wail, "Whhhhyyyyy did God doooooo this to me!?"

My barely suppressed giggles did not help her feel better. However, her reaction certainly lightened MY mood and reminded me that, no matter what we are dealing with in life, how we react to it defines how important it becomes to us.

Now, perhaps we have a little religious instruction to complete with her...

Gearing Up for Another Miracle--Help Needed!

2011-07-07T22:04:00.000-07:00

After a few weeks of dizziness, balance issues, mild headaches and right side body numbness, my oncologist ordered a brain MRI "just to be sure". All these things could be explained, after all, as long term side effects of the T-DM1.

Unfortunately, the medication is not causing these things. Rather, it is the 15 or so roughly centimeter-sized metastatic tumors that were uncovered in my brain today. Yikes.

After a brief freak out, I sensibly made use of my anti-anxiety medication. Turns out that stuff really works for major anxiety (it was actually prescribed to me for chemo-related nausea and that is what I nearly always take it for, so I was delighted at its effect on my very raw nerves). 30 minutes later I had regained control of myself and was ready to speak with my doctor to figure out what this all means for me.

There is no doubt this is a very unfortunate and major setback for me. Nonetheless, the cancer is completely controlled in my liver and bones right now, and this is a very good thing. Because of this, they can focus on treating the brain aggressively right now without worrying about more than maintenance for the rest of my body because nothing there is on fire. Thank goodness.

So, the treatment plan? First of all, I need lots and lots of prayers. Please kick them up, especially through the intercession of Bishop Don Alvaro if you are Catholic (or even if you aren't but are so inclined). I do believe he obtained for me my first amazing healing of the liver which remains clean even now, so I'm sure he can do a heck of a job with the brain! Prayers are what give me peace and the strength to face this with all I've got, so I thank you for them, in whatever form you care to pray them, from the bottom of my heart. I am specifically asking for COMPLETE HEALING. Oh, and prayers for my family would be appreciated as well please, as this is very difficult for them.

I am officially off the TDM1 trial now, but so love that drug that did so well for me for so long. It did its job beautifully but never had a chance in the brain because of its molecular weight. So, we are switching to a new chemo tomorrow. This one is called Tykerb, is for Her2+ cancers, and does cross the blood brain barrier. Those suckers aren't going to know what hit them in a few days. This chemo is in pill form and does not require a port infusion. I am guaranteed to have tummy troubles with this one, but we'll take it one day at a time with that. I will also have Herceptin infused every three weeks to maintain the disease outside of the brain. That one is no big deal. Very similar to the drug I have been on all this time, just a little milder.

In an amazing, and I mean truly amazing, flurry of activity I began the radiation portion of the show today. Same day as diagnosis, can you believe it? It often takes weeks to get started but my wonderful oncologist made a phone call and pled my case with the rad onc and he saw me within 20 minutes and I was actually receiving treatment a few hours later. I did not know it was possible for radiation oncology to move that fast and am so grateful that I was already able to attack this rather than wait seemingly incessantly for treatment to begin.

I will be having 20 treatments of Whole Brain Radiation (WBR). Every business day for 4 weeks. I will have these in Mission Hills so at least I don't have to go all the way into UCLA. I cannot drive for now, so I will need lots of help from lots of people, most of whom don't even know yet that they will be called on. Sorry! But if I've learned anything from all of this, it is that I need help. Humbling, to be sure.

WBR is an intensely fatiguing experience I am told, and this will last for several months after treatment. I have been advised by my doctor to accept all the help I can with the children during this time, as I will have no desire to remove myself from the couch. Hmmm...we'll see how that works out, but a nice thought! I may have some short term cognitive processing problems, so please bear with me if I can't remember what I was talking about or have a hard time finding a word. I am likely to continue to be off balance for awhile as well. But all this should get better over time.

I will be losing my hair in about a week. It may grow back and it may not. The plan is to cut it super short this week so I have less gobbing off. Maybe I'll look like Halle Berry. Or maybe I won't.

I am now on a fairly powerful steroid called Decadron to control the swelling in my brain. This should significantly reduce my numbness and headaches in a few days. That's the good news. The bad news is that I am virtually guaranteed to become an emotional wreck overnight. You may want to avoid me for the next few months. (Unless you want to see what I look like bald, of course!)

I am truly sorry to report such dreary news and pray that all of you who read this will adopt the cheerful and positive attitude that I must maintain to see this through. Lurking under this sunny outlook, however, is enough fire in my belly to attack this, so don't worry that I am going to turn into a passive little flower. I am mad at this sneaky, rotten disease, and I want it out of my body. Now. All of it. ESPECIALLY out of my brain, for goodness sake.

Thank you for your prayers, your kind thoughts, your patience with me and the help that always comes when I need it. I am blessed in family and community and wouldn't trade that for anything.

Masked Bandits

2011-06-22T18:59:00.000-07:00

We are on vacation! The boys are doing two weeks of football camp at Marin Catholic High School, so we are staying down the street with our former neighbors who, for some reason I cannot comprehend, continue to welcome our enormous, sloppy, hungry, noisy family into their home for long periods of time...and actually seem happy to see us.

It has been six years now since we lived here, and I am realizing on this visit how many fundamental things I have forgotten about the place. Little things, like which street to turn on, and which grocery store has which products, but also bigger things having to do with the flora and fauna.

For instance, yesterday it was very hot. Unlike in our desert home where heat hardly matters because everyone has air conditioning, the heat descends like a velvet theatre curtain on the surprised citizens of Marin. Unused to it and unprepared for it, lethargy sets in for the general populace and city streets are nearly empty. The boys reported after camp that a full third of the boys took of their pads, declared themselves ill and sat out the practice in the shade. Accustomed to playing in full pads in 100+ degree heat, Joey and Sam were unfazed and wondered what was wrong with everyone.

At any rate, when I got back to the house yesterday afternoon, I pulled into the driveway and rolled down the windows so the car wouldn't get too stuffy in this crazy heat. As I was wrapped up in dealing with my napping child, I did not think a thing of the bag of trash I had accumulated during the day and left in the car to be dealt with later.

Bright and early this morning I went out to the car and found, to my horror, that it had been ransacked! The bag of trash, which unfortunately contained the buns rejected by my little girls during our hot dog picnic in the park, had been ripped open and spread throughout the van. There were crumbs on every surface...which are many in a 12 seat church van, let me tell you.

But that wasn't ALL that was on every surface.

Apparently, the family of raccoons that invaded my van upset their delicate digestive systems with their hot dog bun splurge and left copious evidence to support this theory all over the car. They tagged the seats, nearly all of them. They got the carpet. They even got three of the four sweatshirts the kids had carelessly discarded on the floor.

What is a mom to do with a van full of ripped up trash and raccoon poop at 7am? Get over to the do-it-yourself carwash lickety split, that's what! So there I was, armed with carpet cleaner, Febreze and disinfecting wipes, dumping tokens into the giant vacuum machine before the sun was fully risen, scrubbing with all my might. I could not take the kids to camp in a poop-mobile. Not even I am THAT casual.

So, the good news is that my van is really, really clean now and smells like lavender. The washing machine ran for a good portion of the day on the sanitary cycle so I have lots of clean sweatshirts and socks, too. You see, we don't have to worry about things like raccoons (or even most bugs) in the desert, so I have nearly forgotten completely that they exist in other parts of the world more hospitable to lifeforms of all kinds.

Makes me appreciate the desert.

Happy News in the Happiest Place on Earth

2011-06-17T15:24:00.001-07:00

I just returned from two days at Disneyland with Sam. We had such a nice time, just the two of us.

Sam is a very low-maintenance kid. He is not a complainer, is very independent, just sort of does his own thing, nearly always happy. As a result, he sometimes gets less attention than the other kids who are, well, just louder and more insistent. We are aware of this and try to reward him for his easy-going nature whenever we can.

When I realized (without him saying a word about it) that the other three older kids all were going someplace fun this summer, Jay and I decided that Sam should have some fun too. I woke him up early on Tuesday with, "Hey, want to go to Disneyland?" I wish I had recorded how his eyes flew open and mouth curled into his handsome Sammy smile, because it was priceless.

Off we went to the crowds and had a great time just hanging out together. Even the lines were a pleasure with Sam as he never complained or asked how much longer. He is a good example of a cheerful person, one I should do a better job of emulating!

At any rate, on the morning of our second day, I got an email from my study nurse (have I mentioned how much I love her? She is so great about giving me information as soon as it comes up...and when you are waiting for test or scan results, every minute seems like an hour). She sent me a copy of my biopsy report that showed that both spots in the right breast are benign. What an unexpected pleasure that was to read!

So what did we do? Had a GIANT ice cream sundae to celebrate, of course! Then we went on California Screamin'. Love that ride.

Incidentally, I still have to have one of the lumps removed for pathological reasons I don't fully understand, but that does not lessen my delight in the results. I am greatly pleased that they are being so cautious with me given my Stage IV diagnosis. Makes me feel like I truly might be "salvageable" as my oncologist said. It's a good place to be.

Four out of Four Doctors Agree

2011-06-07T22:02:00.000-07:00

It's biopsy time again. Luckily, it is soon (Friday) and I will have results early next week, so I don't have long to wait.

I actually had a very nice day at UCLA today in the care of the folks at the Revlon Breast Cancer center and the Iris Cantor Breast Imaging Center which, surprisingly, I had never been to before today. I have a ton of confidence in my surgeon and find her very presence reassuring. Her wonderful staff got me upstairs for initial imaging within a half hour (I am used to waiting weeks in between referrals and procedures).

I had a similarly great experience with the fellow who performed my ultrasound. She was exceptionally thorough, knew my history completely, and eventually corroborated her findings with the radiologist who read the MRI that began all of this last month. They decided together what to do while I waited. (Incidentally, for you Kaiser patients, she told me that she would be heading to the Kaiser system as soon as her fellowship was over, so you will soon be getting a great new radiologist!)

Not once today did I feel like a Stage IV patient. I felt like any other young(ish) woman who might find a suspicious lump in her breast that could be successfully treated. Everyone I came in contact with today was interested in being aggressive with this latest finding and assumed that it could be completely eradicated, regardless of my prior history. I LOVED that. They even took new baseline mammogram, which I was not scheduled for, so they would know the character of anything new that came up over time. I truly appreciated that long-term view.

I am in the very unusual position of not really caring all that much whether these lumps are benign or malignant. I know that sounds crazy, but if they are malignant, they are so early that they can be treated easily. Of course, I'd rather not have the lumpectomy and radiation that are sure to follow a malignant diagnosis, but in the grand scheme of things I'm certainly not afraid of the diagnosis, as I was the first time. It won't significantly change my life--that has already happened.

I read a beautiful account of this profound change in a book I'm reading called The Emperor of All Maladies by Siddhartha Mukherjee. I hope you will indulge me as I quote it here, as it so perfectly captures the unwelcome portion of a patient's transformation during treatment for cancer:

The Italian memoirist Primo Levi, who survived a concentration camp and then navigated his way through a blasted Germany to his native Turin, often remarked that among the most fatal qualities of the camp was its ability to erase the idea of a life outside and beyond itself. A person's past and his present were annihilated as a matter of course--to be in the camps was to abnegate history, identity and personality--but it was the erasure of the future that was the most chilling. With that annihilation, Levi wrote, came a moral and spiritual death that perpetuated the status quo of imprisonment. If no life existed beyond the camp, then the distorted logic by which the camp operated became life as usual.

Cancer is not a concentration camp, but it shares the quality of annihilation: it negates the possibility of life outside and beyond itself; it subsumes all living. The daily life of a patient becomes so intensely preoccupied with his or her illness that the world fades away. Every last morsel of energy is spent tending the disease. "How to overcome him became my obession," the journalist Max Lerner wrote of the lymphona in his spleen. "If it was to be a combat then I had to engage it with everything I had--knowledge and guile, ways covert as well as overt."

This passage could not be more true. I wish I was not so focused on my own health, but no matter how hard I try to drag myself away from it, I cannot escape. Thanks to my family and friends, I do think of other things(like who has what practice after school and who has to remember to bring a share to school this week) but some days it is nearly impossible for me to not dwell on this battle I am constantly engaged in. It is often draining, but I am glad to know I am not unusual in this and that, indeed, it is par for the course if I am truly going to put up a decent fight.

Anyone who has read this blog for long knows that I often speak about the positive things that this cancer diagnosis has brought, for there certainly are many. I honestly believe that I am a better person for it, overall, and don't wish the entire experience away (though it could happily end anytime now). But that doesn't mean that it isn't difficult at times.

Like, say, during a biopsy week. Wish me luck!

Thank Goodness for Children

2011-05-27T10:30:00.000-07:00

At this morning's mass, during the Eucharistic prayer, Bella is barely enduring it all, when suddenly, she perks up, whips her head around to me and asks with wonder, "Mama, did the priest just say Smurfs?!"

It was heartbreaking to have to tell her no, but so delightful to have been asked. Can I live in her world for awhile?

At Least I Got 24 Hours

2011-05-27T10:15:00.000-07:00

Of peace, that is. To enjoy the clean scan results, and the prospect of nine weeks without drama. However, I am getting the clear message that long-term peace is not to be mine, at least not yet.

I saw my oncologist yesterday, ready to rejoice with him in my stunning scan results. Instead, he expressed concern--to my complete surprise--about the developments in the right breast. Apparently, he did not like what was seen on PET combined with MRI, even though I thought it was fine (I guess I should have gone to medical school!). So, he is sending me off to the surgeon for a biopsy.

This is not something I would have chosen. In fact, when he asked me if I wanted a biopsy, I actually snorted and laughed as I shouted, "NO!". But apparently this was a rhetorical question. Though I would have preferred to ride it out the nine weeks and see, he was pretty insistent that I have this done, so I will do it.

But it's not all bad...he let me know that it was because he doesn't think I'm going to die of the original cancer any time soon that he is choosing to be aggressive with this, and that is nice. Too many Stage IV patients are essentially written off by their doctors and not treated because they see no point. In contrast, I was told yesterday I was "salvagable" (who knew I could ever be so happy to be described by that particular word?) and therefore deserved the full work up. Doesn't mean it's malignant.

But it does mean I'm going for another whirl on the roller coaster when I really, really wanted to get off. Hang on, here we gooooooooooo! (I hope I don't throw up.)

Doing the Happy Dance

2011-05-25T19:45:00.000-07:00

Scans came in today, and they are completely clear of progressing cancer!

The new spots in the right breast are seen but not metabolic, which indicates they are benign. The T9 vertebrae is healed as a result of the stereotactic radiation (which I am thrilled about but did not expect since it still hurts quite a bit). The rib lesion is still mildly active but much reduced in intensity from the last scan 5 weeks ago.

My liver is clear. Totally clear of anything abnormal at all. This is the most calming news of all, as the strange abdominal pressure and appetite changes I have been experiencing continue. But since two scans now have shown nothing unusual, I am ready to peacefully accept these symptoms are due to something else and are nothing to worry about. I really needed that peace of mind and am grateful to my doctor for ordering this extra scan for me so I could receive this great gift.

What a roller coaster of stress and emotion and worry this has all been these past few months. I am so, so happy for this reprieve and fully intend to enjoy these nine weeks until my next regularly scheduled scans (when I am sure to begin to worry all over again...because I am all too human).

Thanks for all your support and prayers during these past few months as I have dealt with my first real bump in the road since initial diagnosis. I am sure it will not be the last, but in the meantime I am going to appreciate every moment of this period of, as the radiologist so beautifully reported it, "decreasing disease".

Can Someone Explain How This Happened?

2011-05-23T20:28:00.000-07:00

I woke up on Friday morning, May 20, to find a teenager in the bed my little boy used to sleep in.

This man-child is huge, with feet the size of scuba flippers, and--gulp--hairy legs! He is taller than me, and nearly as tall as his father. He has a smile the size of Texas with a heart even bigger than that. He is lean and muscular, hysterically funny and witty as all get out. He makes me laugh every day and continually delights me with his character, which I could not be prouder of.

I am so happy that this newly minted teenager still likes to hang out with me and his dad. He talks to us about all sorts of things and delights in telling us stories and dumb jokes. He wants us to see the things he thinks are funny and tell us about things that concern him. I hope and pray that he does not change in this regard.

He is a wonderful--though requisitely obnoxious and torturous--big brother to his six younger siblings, and sets a good example in honesty and integrity. He has chosen quality friends and is loyal and objective.

I can't believe that my little boy is officially a teenager. How did this happen? I blinked and he grew up. Now comes the fun part!

And Now for Some Good News

2011-05-11T10:10:00.000-07:00

Yesterday we had Joey's tri-annual IEP review. Every three years the school evaluates the resource children to see how they are doing. They talk to all their teachers, test them to see if they need more or less services, and then make a recommendation to the parents.

Joey's review could not have been more positive. His teachers unilaterally called him hard working, intelligent and kind. All have seen progress this year in his physical writing skills (except spelling which remains atrocious). He is making As and Bs with no resource help whatsoever, so he has been moved to a "monitor" status, which means he is out of resource advisory and will check in with the resource teacher now only periodically or if he needs something.

We are so proud. Just a few years ago we were consumed with worry about our child who was not progressing in school. We would have done anything, paid anything, ransomed anything to hear the news we got yesterday. As a complete bonus, he has turned out to be quite the track star, solidly winning three sprints at his last meet. All this has combined to give him the confidence he was lacking for so long. We are literally watching him blossom and realize the potential we always knew he had.

Happy, happy, happy.

The Totally Backwards MRI

2011-05-09T19:10:00.000-07:00

Well, the long-awaited MRI results came in today. They were...interesting.

As you may recall from my last post, I have a large mass that has recently developed in my left breast in same location as the original cancer. Even though it did not show up on my recent PET/CT, I was insistent that something was wrong, hence the MRI which is clearer imaging for the breast.

When the MRI was done, I showed the tech the mass and asked afterward that she check to be sure she saw it. She did see it and was able to show me on the screen the area that corresponded the the mass we could see and feel. I left happy in the knowledge that it had indeed been captured and would be properly analyzed.

So, the good news is that the mass is nothing to worry about (and I now believe this since two different imaging systems agree). The radiologist referred to it as likely post surgical changes (interesting, since I never had surgery) but classified it on the BI-RAD scale (1 being nothing seen at all and 5 being without a doubt malignant) as a Category 2, benign. I am now officially ready to put this to rest.

However.

There are two new suspicious lumps in the right breast. I cannot feel them, and they are still quite small, about 6 mm each. These fall on the BI-RAD scale at category 4B, which means "suspicious abnormality, biopsy recommended". I immediately got out my MRI from my original diagnosis and was a bit dismayed to learn that my original cancer was classified as a Category 4C.

Why am I concerned, you may ask, since I already know I have cancer and it has already spread through my body? Because breast cancer, as far as I understand, does not spread to the other breast. It spreads out of the breast into bones, lungs, liver and brain, but does not infiltrate the healthy breast. Therefore, if these lumps are indeed malignant, they will indicate a new primary cancer.

It would be strange for me to have a second primary since I didn't have any risk factors for the first one, but I have been on a trial drug for quite some time and have received more radiation than the average person, so who knows? I suppose anything is possible. A new primary could have the same biology or completely different biology as the first one. Sometimes, even different lumps in the same breast have different pathologies. That means, if these new lumps are malignant and are not HER2 positive, they would not respond at all to the drug I am currently on. However, since these are still so small, I suspect they can likely be easily dealt with through a lumpectomy. But what do I know.

I am going to wait until I see the NP on Thursday before I get too excited about all of this, but it is definitely a setback for me mentally. There is a decent chance it may not be malignant at all. My doctor may not even recommend a biopsy at this point, preferring to wait for the next PET (in fact, I am guessing that will be his strategy). But at the end of the day, it is another thing to worry about, more tests on the horizon, more waiting and more anxiety. I would be lying if I said this was all easy to take.

Nonetheless, I am choosing to focus for now on the fact that the big mass seems to be nothing to worry about. Let's take our victories where we find them, shall we?

Now, I believe I have some children to tend to!

A Very Belated Health Update

2011-04-30T09:43:00.000-07:00

My apologies for being silent for so long...while there has been no shortage of things going on over here, I have experienced a blog-deadly combination of intense fatigue and intermittent internet problems. But I am here and all is well!

For those of you who want a detailed update on my condition, read on. For those who don't, you can stop right here secure in the knowledge that I am still alive and kicking, and happily so.

I completed two weeks of daily radiation to my rib last week, as well as a single high-dose zap to my spine. I stayed with a friend in Glendale during my treatment so I wouldn't have to drive back and forth, and that was a nice break for me. I took the two little girls with me as I could not bear to leave them. This made for a heavier load on my friend who watched them while I was treated, but eased my conscience greatly about leaving my family unattended for so long. I am truly grateful for her help and for nurturing my spirit as well as my body while I was in her care.

The daily radiation, while certainly inconvenient, was really not that bad. Each appointment only took about 15 minutes and didn't hurt at all. I have a little skin discoloration where the beam passed through my skin but it doesn't bother me. The same cannot be said of the stereotactic dose to my spine. That single shot of radiation sent me into a spiral for no fewer than three days and caused me discomfort in my kidneys and on my abdominal skin. This, happily, passed in a few days and all is now well.

With some notable exceptions.

The pain in my spine and rib, which by all accounts should be gone now, has not abated. In addition, a large and very suspicious mass has developed in my breast exactly where the original cancer was, and I have a strange tenderness in my abdomen. When I showed these things to my doctor, he immediately ordered scans. We all expected them to come back showing that the cancer had continued its march in my breast and liver, and my doctor assured me that I should not worry if that was the case, that there were many tricks left in his arsenal. Needless to say, this time of waiting and wondering was very stressful.

The scans came back last week showing nothing. Absolutely nothing. Instead of being happy about this, as any normal person would be, I was incredulous. I went back to my doctor and asked that the NP do another physical exam to assure me that I am not imagining the mass in my breast. She concurred with my findings completely and could not understand why it didn't show up in the PET/CT. She ordered an MRI to see if we can get some more information on what is going on. That will be on Tuesday of this week.

So, the waiting and wondering has not ceased for me, even after all these weeks, but I am more peaceful with the state of things. As far as I can tell, there has never been a large active cancer that has not shown up on a PET, since cancer is by definition metabolic and the PET measures metabolic activity. Therefore, I have concluded that it has to be something else and I am wasting these precious nine weeks of happy scan results with needless worry. I tell you, the emotional roller coaster of cancer has been, for me, far worse than the physical insult. It is very difficult at times to get my head around living and dying, living and dying, and preparing for both simultaneously. But I am still a basically happy and peaceful person. That's the faith and prayers part!

One more minor thing to mention, if I'm coming clean. For the past nine weeks I have been receiving iron infusions to bolster my sagging hemoglobin. This has done wonders for my energy level and I have begun to feel more like a human being as my numbers have crept up. I am still below normal in my iron saturation, about half of what I should be, but double from where I was, so it is definitely working.

Just after my iron infusion on Thursday I nearly passed out. I had an intense bout of nausea and dizziness that almost flattened me. I alarmed the nurses, who called for my doctor (who was there in a flash and very reassuring) and kept me for awhile, giving me Benadryl and waiting while my blood pressure returned to normal. I have no explanation for this, and my doctor has called it a bad reaction to the iron, which happens occasionally, but rarely after so many infusions. Needless to say, he has discontinued the iron so I hope that my blood can find its own way from here on out. Just another piece of the puzzle. Truly, the entire episode was nothing short of humiliating for me, as I do not relish losing control over myself for even a moment. Especially in an infusion room filled with other patients.

So, there you have it. The up-to-the-minute update on my ever dramatic health situation. I am very fortunate to have children to distract me from all of this, because otherwise I might be in danger of becoming totally self-absorbed in my own health. But as it is, each day remains relatively normal for me, as I am pulled along with the tide of my family life. Thanks be to God.

Congratulations, Julia!

2011-04-17T15:30:00.001-07:00

Julia made her First Holy Communion yesterday. She was a vision in her dress, and the day was a joy for us all. For the first time, we made it through a first communion mass without having to evacuate small children to the crying room, so I'd say it was an unqualified success!

As this day fell on the weekend between two weeks of daily radiation treatment that have me spending more time with doctors than with my family, I was simply grateful that we were all together.

Julia, may you never stray from the Holy Eucharist, which will always be your source of grace and strength. Congratulations!

It Was...Interesting

2011-03-30T23:29:00.000-07:00

Jay does not insist that I do much for him; as far as husbands are concerned, he is pretty low maintenance. He likes his food to be hot, and that is really about it as far as his "must have" list. (Yes, I know I am blessed in this, and of course it makes me want to do all sorts of things to make him happy since he is so easy to please!)

So, imagine my surprise last week when I received an email from the producer of X-Factor (Simon Cowell's American Idol-like singing competition) confirming my audition in Los Angeles for Sunday. I thought it must be a mistake, because I would never, EVER sign up to audition for that show or any other reality circus that would require me to be on television, subject myself to riddicule and, most importantly, keep me away from my family who I leave often enough for medical reasons.

Then I scrolled down and read the entire thread. Apparently, Jay received a general notice of auditions some time back and took it upon himself to contact the producers to let them know that his wife has "a beautiful voice" but that, due to her cancer treatments, she could not stand to wait in the kind of lines required to obtain an audition. The producer then wrote back to Jay assuring him that he could get me a special, confirmed audition due to my condition that would minimize my wait time substantially and allow me to sit most of the time. Once this was in place, Jay decided to let me know that I would be auditioning, in three days' time.

After I scraped my jaw off the floor, I immediately launched into the million reasons I had no desire to do this. For one, I may sing fine in church, but I am no American Idol (nor do I wish to be). I don't perform or dance when I sing--I pray! When I don't pray a song, I don't sing it particularly well. Jay agreed that I sing best when praying and rather than excusing me from this farce he instead went to work assisting me in selecting songs that would allow me to show the judges who I am--a Christian genre singer.

Knowing that a Christian singer of any caliber would most likely not have the "X Factor" they are looking to share with a very secular, often musically offensive public, I refused to do it. I could see no point: I didn't want to audition, I didn't want to compete, I didn't want to be rejected, and I didn't even want to win a recording contract to be a pop star--not that I could have ever seen it going that way. Nonetheless, what else could this be but a complete waste of time?

But Jay looked at me, smiled sweetly, and said, "Please? I really want you to give this a try. For me."

What could I do?! Nothing, I tell you. I was doomed.

So, off we went on Sunday to the LA Sports Arena where I joined 15,000 hopefuls being herded and sorted like cattle. I tried to be cheerful and not grumble, because if I was going to do it to please him what would be the point in being grumpy about it? But I did let him know--sweetly, of course--that he owed me big time and that he had better not leave me alone for even a minute!

And you know what? I'm glad I went. It was really an experience like no other. I saw every type of human, and, sadly, what many of them would do to get on camera. I don't understand that desire at all, so I watched in a completely detached way the antics, outfits, and plotting that went on around me. I was partly amused but mostly horrified at what reality television has done to our society. I asked Jay, as we watched the scene around us with our jaws half open, if he thought God might be regretting his promise to never send another flood. Because, looking around at what the human race has become, it seemed like it might be a good time for another one.

Thankfully, there were a handful of normal, actually talented people there too. I got to talk to some of them who just wanted a platform to launch a legitimate singing career. This was in stark contrast to the man dressed like Michael Jackson and the girl group wearing blue wigs and satin pants.

Needless to say, I got to say "I told you so" to Jay when the judge told me, immediately with his body language and soon thereafter with his words, that I am most definitely not what they are looking for. Hmmm, who could have predicted that? Oh, that's right, I could have!

The best part of the experience for me was seeing how truly disappointed Jay was that they didn't see in me what he sees. That confidence and support of me was worth the entire day, so how could I regret it?

So what if I don't have America's X Factor? I have Jay's, and that is all I need!

It's Good to Know Your Lines

2011-03-24T07:38:00.000-07:00

Sam's 4th grade teacher recently had a talk with the kids about personal hygiene. Apparently a warm up in the weather caused some unpleasant odors in the classroom, so they gently learned--many of them for the first time--about the wonders of deodorant.

Sam came home in a fever to get some Old Spice deodorant of his very own. At first I thought, "Old Spice?! Really?" I remembered Old Spice in our bathroom when I was very small and so I associated it with older dads and grandfathers. In fact, I remember that our Old Spice product had an old-fashioned brush for shaving with it. So, I hardly think of it as modern, and I certainly don't think of it as something a nine year old would aspire to.

Then I remembered the Old Spice Guy, that handsome gentleman who has been ceaselessly promoting Old Spice on TV. As someone who's career was in marketing before becoming a mom, I can most definitely appreciate the concept of brand repositioning, and Old Spice has certainly done that. They are now appealing to women, who do most of the decision making at the grocery store, and are advising them to ensure that their man smells like one. So, it was with admiration for the marketing team at Old Spice that I was pleased to ensure that Sam got his own deodorant.

The next morning, Sam came downstairs, lifted his arm proudly and said, "Mom, how do I smell?"

Luckily, I knew my line: "Like a MAN!"

Yep, that was the correct response. I don't think he stopped smiling for an hour.

What's Ahead

2011-03-21T13:40:00.000-07:00

If you are interested in knowing what is ahead for me as I enter the world of radiation treatment, take a few minutes and watch this excellent summary put together by the UCLA Radiation Oncology department. Not only does it explain in detail what I can expect and how radiation works, but it features my own doctor (Dr. Selch) and the very same office and treatment rooms I will be seen in.

My spine will be treated with high-dose stereotactic radiation therapy, while my rib will receive the more traditional multi-dose beam over a period of somewhere around two weeks. I should get started in a week or so, after my insurance processes all of this.

So, here is everything you ever wanted to know about cancer radiation therapy. May you never need it yourself, but rest assured that, like almost everything in life, the concept is far scarier than the reality. I can definitely do this!

Boys are NOT Girls

2011-03-15T21:40:00.000-07:00

Yesterday I heard some alarming noises coming from the trampoline area so I bolted out of the kitchen to see who was hurt. As I rounded the corner I saw Sam and his friend rolling around in the middle of a circle of other children (some mine, some visiting).

At first I was confused--I couldn't tell which one was hurt. Then, it occurred to me that they were fighting. This was very difficult to process, as these two are good friends who spend a lot of time together and I could not imagine them in a physical fight.

I finally cried out to the crowd in a desperate attempt to see what was going on, and they all looked at me like I was from Mars. "Mom," Lindsey said, as if I were the least intelligent person she had ever encountered, "they're playing tap out wrestling."

Duh.

No, wait. What's that?!

I watched in horror for a few moments as they rolled over eachother and jabbed at one another, fairly evening matched from what I could tell. I finally couldn't take it any more and said, "This can't possibly be fun for you, can it?!"

The wrestling came to an abrupt halt. Sam grinned at me, blood oozing from a (small) cut on his lip, and said enthusiastically, "YES!" His friend agreed with equal enthusiasm, just before he lunged at Sam anew.

I looked pleadingly at the girls in the crowd and said, "Have any of you girls ever felt the need to do this?" Again, they looked at me like I was dumb as a fence post. "No!" they chorused. Of course not. But it didn't stop them from enjoying the show, I noted.

Boys will be boys, I guess, but this girl will never, ever understand them.

Spring is in the Air

2011-03-13T17:57:00.000-07:00

It may still be Winter officially, but at our house we ushered in Spring today. Amidst the blossoming trees and warm beams of sunshine could be heard the delighted shouts of my children as they opened the pool for the first time since Fall.

You couldn't pay me enough to get in that unheated water (although I could be convinced to join them in the 99 degree thawing tub). However, seeing my children truly worn out from several hours of hard core swimming? I would pay plenty for that.

I've missed you, sun! Welcome back.

My Annual Torment

2011-03-12T19:21:00.000-08:00

Why, oh why, do the Girls Scouts time their cookie season to match Lent?

Every year I look longingly at boxes of Samoas and ponder the question of whether this is a cruel joke or a complete coincidence. I currently have two girl scouts who badger me to order cookies in January, when it seems like a really good idea. However, when the order arrives during Lent I wonder what I was thinking. For weeks these boxes sit on the pantry shelves while I shoot loving glances their way, counting the days until they can be mine.

Today, as an added bonus, I got to spend three hours with Julia outside of Lowes staffing her troop's cookie booth. We sold dozens of boxes to happy people while I imagined them, somewhat resentfully, ripping the boxes open the minute they got back to their cars (which is exactly what I would do if I were them, no doubt!). Julia, like me, gave up cookies for Lent, so she abstained along with me while the other girls of her troop liberally sampled their products. I was proud of her, especially her cheerful disposition about the whole thing.

It helps that we always exclude Sundays from our Lenten promises. They are, after all, feast days in and of themselves, so we treat them as such. We were both imagining tomorrow when we would be consuming the box of Samoas we tucked away for the occasion.

It also helps that Easter is late this year so we had a little time to enjoy a few cookies before Ash Wednesday happened upon us.

Still I want to know. Why cookies at this time of the year? There are 11 other months that would work just fine. I'm just saying.

Doesn't This Just Say It All?

2011-03-10T22:25:00.000-08:00

At the moment, I have many friends in need of encouragement. From marital issues to health problems, from unemployment to children with disabilites, everyone, it seems, has their crosses to bear. My prayer list is getting longer and longer, and my heart simply aches for each person on it. Please know, dear friends, that I am with you through it all, and that all of this will pass in time. In the meantime, please consider this beautiful quote that has inspired me.

"For a son of God, each day should be an opportunity for renewal, knowing for sure that with the help of grace he will reach the end of the road, which is Love.

That is why if you begin and begin again, you are doing well. If you have a will to win, if you struggle, then with God's help, you will conquer! There will be no difficulty you cannot overcome!"

-St. Josemaria Escriva

One day at a time, my friends. One day at a time.

One Less Thing to Cry Over

2011-03-07T21:19:00.000-08:00

I'm speaking of spilled milk, of course.

I came home a few nights ago to a pile of wet kitchen towels on the floor of the laundry room. (Incidentally, this is exactly where I ask the children to place things that need washing, as I find their sorting skills somewhat lacking in precision.) I didn't think much of this, and carried on with serving dinner and helping with homework.

In the context of a completely unrelated conversation, it came out that Bella had "helped" earlier that evening by bringing in a gallon of milk from the garage, and that she had accidentally dropped it by the hall closet. Naturally, the plastic split and an entire gallon of milk spread itself across the tile.

As I questioned the children about this, completely stunned that there was virtually no evidence of this having happened (other than the wet towels), I learned that Sam, hearing the spill from upstairs, dashed down and set to work cleaning it up without hesitation. No grown up asked him to do it. He had nothing to do with the mess. He just fixed it, and did a great job doing so. If I hadn't seen the towels, I wouldn't have ever known it had happened. That is a real first for me.

Sam definitely earned "kid of the week" in this family. May this helpful trend be contagious and oft repeated!

Just A Bump In The Road

2011-03-03T21:55:00.000-08:00

Scan results are in...

The good news:

1. My liver is still completely clear.
2. My doctor continues to be delighted with my response to treatment.
3. I continue on the clinical trial of T-DM1.

The less good news:

1. I have some new, active skeletal metastases in my rib and thoracic vertebrae.
2. They hurt.

The good news in response to the less good news:

1. I will receive radiation on these spots to relieve the pain and hopefully zap this cancer into total oblivion.
2. The clinical trial I am on does not consider progression of cancer in the bones as "worsening of disease". In other words, I get to keep receiving this drug that has done so well for me for so long.
3. I have been advised that activity in the bone does not pose a threat to other organs. Apparently, bones behave differently than tissue.
4. My doctor is not even slightly alarmed by this turn of events and still believes I am doing amazingly well.

In other news, I have begun to receive a weekly iron infusion to combat a hemoglobin deficiency that has caused me great fatigue of late. I am thrilled that the problem has been identified and that we can now address it, as my energy levels have been sub-human the last few weeks (and don't the kids know it--they smell weakness a mile away!)

Although it is difficult to not become alarmed by progression of any kind, my entire medical team has assured me that this is really not, in and of itself, a big deal and is really par for the course with a Stage IV diagnosis. While we all, of course, had hoped that we had beaten things back completely and permenantly with our first strike, the reality is that I am living with a chronic disease. It will rear its ugly head occasionally and we will just have to beat it back into submission each time it shows up with whatever tools we have in our arsenal. And there are plenty of things in that arsenal.

We will tackle this bump in the road head on with every expectation of success and the ever-present knowledge that God is ultimately in charge of it all.

So, let's bring on the radiation, continue with the drug that is keeping my liver healthy, and, above all, keep the faith!

Not Your Usual Breakfast Comment

2011-02-28T19:21:00.000-08:00

Today I had a PET/CT scan. As usual, this required that I fast beforehand and follow some other general guidelines (such as no exercise for 24 hours--now THAT one is hard to take, I tell you). These scans also require that I keep a roughly 10 foot space between the kids and myself after the scan for the remainder of the day in case I am shedding radation. As you might imagine, this is difficult for the little ones to understand, and I am so grateful for the older children, husband and grandmas who are quick to hold, help, change or read to smaller siblings in order to distract them from this ordinance.

At any rate, I have now done nuclear tests so often that my kids can recognize the difference in my morning routine on a scan day. Particularly observant this morning, Julia said, "Oh, do you have a scan today?" I confirmed that I did. (I'm sure her ability to recognize this had NOTHING AT ALL to do with fact that I might possibly have been a bit edgy without my morning coffee).

"Will you be radioactive?" she asked next. I confirmed that I would be.

Tony, listening to this from the other side of the breakfast counter, promptly wailed, "Aaaawwwww, I HATE it when you're radioactive!"

Not your typical breakfast conversation to be sure, but a very real part of our crazy reality.

Scan results will be ready Thursday, and I will make every attempt to post them that same day. Thanks for waiting along with me!

Locks of Love

2011-02-16T08:11:00.000-08:00

I have not been able to cut my hair since my diagnosis. At first it was purely psychological--I was supposed to lose my hair and, indeed, was prepared to do so. When I found out I was spared that particular side effect thanks to my study drug, I clung to my tresses with all my might.

After a few months of observing the women in the infusion room who were not as fortunate as I in their follicle response to chemo, I began to realize that I was growing it for a purpose. Locks of Love is an organization that makes real human hair wigs for children who have lost their hair due to cancer treatment or other health disorders causing hair loss. My hair met their specifications for donation, provided I could give them 10 inches. Now, that's a lot of hair. Nonetheless, I was determined to give back what should not have been mine and so the growing began.

Last week I made the cut and sent the envelope off with much joy and a beautifully complete sense of purpose. I have had the chance to return a gift that was given me and I couldn't be happier about it. Plus, I love my new haircut!

Here's what 10 inches of hair looks like...

What Does This Say About Our Family?

2011-02-01T20:35:00.000-08:00

Tonight was open house at Sacred Heart School. We were visiting Lindsey's classroom when Sam caught sight of her "Life Goals" poster on the wall. We stopped to read it together.

There were about 10 things on the list, roughly half having to do with places Lindsey would like to visit. I was reading off this list--Visit New York, Visit Paris, Visit China, etc.--when I came to number seven: "See Big Ben".

Sam paused for a minute and then said, "Big Ben Roethlisberger?" clearly impressed that his non-football-fan sister would have this on a short list of her life goals.

After explaining to Sam that she meant the clocktower in London and subsequently witnessing his total disappointment in this, it occurred to me that we just might want to spend a little more time on world culture and a little less time on football stats.

Or not. 'Cause really, which will be more useful in everyday life? Seriously!

A Sad Day Indeed

2011-01-25T11:45:00.001-08:00

One of the things I have been enjoying about Natalie recently is how she looks at me, raises up her arms and says, "Hold you!" I have asked her so many times, "Can I hold you?" that she now has her pronouns for this sentence totally mixed up.

This morning she waited for me at the top of the stairs, raised her arms and said, "Hold me!" I did a double take and said, "Hold ME?!" She repeated clearly, "Hold me!"

Awww. I HATE when they grow out of my favorite mispronunciations.

At least Bella still says "besince" instead of "because". I'll enjoy it while it lasts.

Isn't it Obvious?

2011-01-24T11:51:00.000-08:00

Jay called me over this morning, as he often does, to ask that I take a moment out of my busy day to appreciate the dog. This is the scene that inspired his affection:

Unmoved, I said, "You know, I could do that. Lay around all day and bask in my own odor, contributing nothing to the house. Would I get the same admiration?"

Jay, looked totally shocked, exclaimed, "But he IS contributing something to the household!"

"Oh really?" I asked skeptically. "What's that?"

"Aesthetics!" he confidently replied.

Of course. Don't know how I could have missed it.

Clarification, Please

2011-01-21T11:48:00.000-08:00

It's family prayer time...the part where we all go around and state our specific intentions.

Tony says: "And I pray for mommy's cancer...."

There is silence, as the kids process this. Then come some smiles and suppressed giggles.

Tony is looking proud of himself for remembering me in his intentions.

Finally, Jay says: "You mean, that the cancer does BADLY, right? You're not rooting for the cancer, are you?"

Tony, burying his head under the covers, just nods. Everyone is relieved.

Natalie

2011-01-12T08:59:00.000-08:00

Poor Natalie. As the seventh child, she is most definitely not as well-documented as her older siblings.

As I delighted in her antics this morning, I decided to dedicate a post just to her, so we could take note of some of the things I am not writing in her baby book. (Since I haven't made one for her. YET, of course. I plan to get right on that.)

Because she is preceded by a sister with such a strong personality (I speak, of course, of Bella), I tend to think of Natalie as having a mild-mannered temperament. However, she is quite her own person with plenty of spunk of her own. She definitely has her opinions and makes them known.

Natalie, more than any of my other children, is influenced by her siblings. Now that Joey and Lindsey are old enough to help care for her, she spends a decent amount of time being carted around, bathed, changed or fed by her older siblings. Even Sam and Julia help her out a lot, and she knows to go to any of the older four children for the things she needs. If she wants milk, she asks whoever she finds first. It is really the first time one of my children looks to their older siblings as often or more often than to me. This is not a bad or a good thing, it just is what it is. I appreciate the help and she loves the attention.

As you might imagine, spending so much time with older brothers and sisters brings its own dimension to her personality. For instance, as we were sitting in church a few Sundays ago, waiting for mass to begin, Natalie stood up, wiggled her little rear and enthusiastically shouted, "Conga, conga, conGA!". I didn't have to ask where she learned that, as her older siblings nearly fell under the pew trying to control their laughter.

Similarly, last month she delighted me with her statement, "I Santa. Ho Ho Ho!" It was followed shortly by the clicking sound the reindeer make on the roof as she chanted, "Reindeer, reindeer, reindeer." I was convinced she was the smartest two year old on the planet until I realized that she had been carefully coached. Although I am still convinced of her obvious intelligence, I now understand that Julia invested a decent amount of time imparting this critical knowledge to her.

Less delightful is her penchant for coloring. On the walls, on the couch, on herself. I took her to the doctor yesterday for a vaccination and was completely embarrassed when I removed her clothes and found not one but two marker colors broadly decorating her torso and legs.

Jay and I joke that as far as candy is concerned, Natalie is like one of those pigs who can sniff out truffles in the forest. If she is silent for more than two minutes (and I am sure there are no markers in the vicinity) I can be sure that she has moved stools, stacked things or otherwise connived to locate any hidden stash of candy anywhere in the house and is helping herself liberally. You can't imagine how many times I've heard an outraged cry of an older sibling who has found their Halloween candy, or birthday treat bag, rooted through and completely looted.

Natalie LOVES Dora. I felt a little guilty about how much of it I let her watch when I heard her count to seven in Spanish yesterday (remember she is just 25 months old). I quickly buried my guilt, however, with the consolation that she will be a leg up when she begins her Spanish classes in high school.

Natalie is going to be quite the ballerina some day (the linebacker body and tree trunk legs notwithstanding). She asks me to sing the "Ballerina" Song (made famous by Miss Kitty) and twirls and twirls until I stop. Her grand finale is usually a seat drop wherever she is, be it on carpet or on tile, which never fails to crack up the rest of the family.

She is definitely her mother's daughter in that she savors her food. Every time she takes a bite of anything she says, "MmmmmMMMM!" and beams at me. She never fails to say, "Thank you!" for anything I give her. She has also learned that a well placed, "Pleeeeeeeease?" goes a long way with us all. She greets me enthusiastically whenever I return to the house (even if I just took something to the trash) and runs to me, hugging my leg. I will miss that someday. She says, "I love you!" all day long, and I never get tired of hearing it.

There are a million more things to say about her amazing little personality and her entertaining activities, but I think this serves its purpose. So, Natalie, please know that although I can not chronicle your life as if you were an only child, you delight me as much as if you were one. I love you!

Humble Acknowlegement

2011-01-03T13:18:00.000-08:00

My last scans came in clear. Again.

This means that every scan since last April has been free from active cancer. My breast shows no evidence that there was ever a tumor in it. My liver has no lesions. My bones, though scarred, show no significant uptake on PET scan. I have one little "hot spot" on a single rib that is almost certainly a microfracture over a healed lesion . And that is all.

For some reason, even though I have had good scan after good scan, I have been reluctant to declare myself as the miracle I know that I am. Jay has been anxious for our NED party, but I have not been able to give the all clear for it. Perhaps it is because I have been quite guarded that this good news could end at any time, or maybe it is because I am waiting for the bones to completely heal (which they may never do). Whatever the reason has been, it is time to move forward.

So here is my declaration: I am a walking miracle! God has chosen to heal me, has heard all the prayers and has answered them. Apparently, I have more to do here on earth (no pressure, right?!). I am humbled and so very grateful, especially for my family who needs me.

My oncologist told me at my last visit that I have demonstrated a "complete response" to treatment. In other words, I am in remission as far as Stage IV can be in remission. He very frankly told me that he didn't know what to do with me now, that no one could know, as we sailed off the map long ago on this clinical trial. Should we go off the medicine and hope the cancer does not return or should we keep on with it for a good while? He does not know and neither do I. He has to assume, based on his years of experience, that there are still some cancerous cells in my body that are just too small to see radiologically. Yet, he also says I might be cured. Only God knows.

So, for now, we have decided to continue with the treatments since the side effects are tolerable for me (certainly versus the potential alternative!). This decision was made easier due to the fact that T-DM1 is not yet commercially available and I could not go back to it if I wanted to.

While I cannot technically have a NED party (No Evidence of Disease) since my bones show plenty of evidence, I most certainly can have a CR (Complete Response) party and intend to do so shortly. I think I will wait for one more clean scan, just to be sure, and then, with all of you as witness to this promise, will set a date and start the planning.

And there you have it.

Merry Christmas to ALL

2010-12-25T10:25:00.000-08:00

Julia made sure the reindeer were not forgotten, and that Santa was sure to know that these were for his team, not diet food for himself.

We wish you all a very Merry Christmas. May peace and joy permeate your home this day.

Suzanne and Family

P.S. Apologies for not posting the news of Joey's pathology, as many of you have asked. His lymph node tested negative for everything and the doctors have concluded that it just reacted to something and went a little crazy. He is healthy and completely through with all of this. Thanks for your concern and prayers!

Over and Done With (I Hope!)

2010-12-08T20:12:00.000-08:00

We are home!

Joey had surgery yesterday to remove the inexplicably swollen lymph node in his neck, and all went very well, thanks be to God. Nonetheless, his surgeon admitted him for observation overnight and as anyone who has ever been in the hospital knows, it is a bit like the roach motel...you can check in, but you can't check out! It took hours and hours to clear him for departure today and we were both literally dancing out of the ward when we were finally released.

Since I've had such a life-saving experience at UCLA we chose to have Joey's surgery there. Once again I was impressed by the care we received, not just medically but from a human standpoint as well. Everyone was so very kind and accommodating, which helps a lot when you are worried about your kid.

The surgery took about two hours and left Joey with a roughly two inch incision mid-neck with a small drain, which was removed right before we left today. He was amazingly stoic throughout the whole thing and didn't even need any pain meds at all today. His doctor ended up removing two lymph nodes rather than just the one since it had become fused to its neighbor due to its significant swelling. She assured me that he still has plenty left and that he won't miss these at all. Since she managed to deftly avoid the two nerves that ran right through the area and maintain all of Joey's facial movement I am feeling quite grateful to her.

Joey's lymph node is now in pathology where it will be dissected and cultured a dozen ways to see if they can figure out exactly what went haywire with it. We should have results in a few days. His blood shows no sign of infection of any kind, so if the pathology is clean this may be the end of this all. I certainly hope that is the case.

Thanks to those of you who have been praying for him and checking in to see how he is. We are truly grateful.

Here is a picture of Joey acting goofy right as they were wheeling him into the OR. The meds hadn't yet put him under but clearly had done their job in relaxing him. You can see the lymph node protruding from the left side (his right). He is not sorry to have that bulge gone.

Here's to great medical insurance...hip hip hooray!

Post Season Report

2010-11-22T16:25:00.000-08:00

Perhaps the football team she cheered for didn't win any games this year, but at least its cheerleaders were champions.

Julia and her talented squad brought home the first place trophy at yesterday's cheer competition, and boy did they deserve it! I could not believe how good they were. They are, after all, only seven and eight year olds, but darned if they didn't pull off a complicated, original, perfectly synchronized and virtually flawless performance. As soon as I get the DVD I ordered I might have to put it on youtube for you all to enjoy.

Both my girls kept their routines tightly under wraps in order to surprise me on competition day, and I was so completely delighted by not only Julia's but also by Lindsey's unique and playful performance. Lindsey's team did not place this year (don't get me started on why she should have placed above a team that relied on a raunchy dance to secure its trophies) but that did not diminish the beauty of a job well done for her team as well. I'm very proud of my girls and somewhat surprised (and don't quote me on this) to discover that cheerleading actually IS a real sport. Kind of.

Like my football players, my girls have learned to be part of a team, how to rely on one another, how to win and lose, and that a group is only as strong as its weakest link. Plus, they've learned to yell really, really loudly, and when is that not a skill to be valued in a family of seven children?!

As for the end of the football season, Sam's team lost in second round playoffs and Joey's team lost in the championship game. So, neither brought home the first place trophy, but both had a great season and played for well-coached and classy teams. All in all, a great year.

So, while everyone around here is a little depressed that football is over for the year, I am personally reveling in the fact that for the next six months I don't have to stuff pads, run the practice trolley and keep track of multiple hair bows. I'm entering my off season as well, and I'm pretty happy about that. Whew!

What Bella Brought to the Dentist

2010-11-18T19:26:00.001-08:00

Just in case, cuz you never know what you might need.

Happy Cancerversary to Me!

2010-11-16T10:15:00.000-08:00

One year ago today I was given the news that would change my life, and that of my family and friends, forever.

Cancer.

Four days later I learned the unimaginable...Stage IV, no possible cure.

On this day one year ago, I could not have imagined the challenges and blessings that this year would bring. I wouldn't have predicted how close to the brink I would come and how resoundingly I would bounce back. I could never have guessed how tightly my family, friends and community would embrace me and how they would keep me from falling. I couldn't have understood that this bleak diagnosis would do so many wonderful things for me.

For here I stand, one year later, a stronger and more peaceful person. Confident in God's love and mercy, sure that whatever path he ultimately chooses for me is the right one. Not afraid of anything life might throw at me now. Grateful for each and every day I have to (hopefully) positively influence the character of my children. Astounded at how completely this disease has backed away from the medication I have been blessed with. Unshakable in my belief in the power of prayer.

No one knows how much time they have left. I am not unique in my situation, unless I consider statistics. But I won't. I have already won the lottery of life in my faith, my marriage, my family and my friends. This gift of unexpected health one year after bracing for an early death is decidedly a great bonus, and I will gladly accept many more to come, if that it what is to be. And you know? I'm feeling more and more optimistic that this will be the case.

Thanks so much for all your prayers and support over the past year. I wouldn't be here without them!

Order Up

2010-11-14T20:03:00.001-08:00

We have been busy writing our letters to Santa.

It is my understanding that the elves have less stress in their lives if they have time to respond to specific Christmas requests, so we are getting a leg up and starting early this year.

The way it works around here is that each child asks Santa for three things and can reasonably expect to receive one of those things, at Santa's discretion. So, for the last few days I have been sitting with each child and helping them write their letters.

This afternoon Bella said to me, "I'm going to put my princess bike with the baby carrier on back, my princess scooter and my princess kitchen all next to my bed." I stopped for a minute to process what she had said (it always takes me awhile since her chatter is near-continuous) and then realized that she had listed all three things from her Santa letter, as if they were a done deal.

"Bella," I said, "you know that Santa generally only brings one of the things from your list, right?"

She paused and thought this over for a moment. "No." She finally said with complete confidence. "I ordered all three."

From the Football Field

2010-11-06T13:12:00.000-07:00

It's been a great season!

We just returned from Sam's first round playoff game, which his team decisively won. Joey's team had a bye for the first round of playoffs because of their regular season ranking, so that was nice. What this all means is that now both boys advance to round 2 of playoffs. If either or both win next Saturday, they will go on the the Superbowl. We've got our fingers crossed!

Sam, after playing most of the season on defense only, was put on offense today as well with good results. The kid is not afraid of hitting and comes off the line like a heat-seeking missile. It is really fun to watch. He has turned in some nice sacks this season, which always gets me on my feet in the stands.

Joey is now playing tight end and wide receiver on offense, and defensive end and tackle on defense. He has had a really good year in these positions and made his first touchdown--an impressive jump for the pass followed by a 30 or 40 yard run--a few games ago. He has been a solid pass catcher since.

It seems a funny thing to say, but I am so grateful for football and the character that it is helping instill in my boys. When Joey first played two years ago he was a third string player. He could not finish his lap without walking and he begged to quit that first week of conditioning hell. Three years later he is a leader on his team, playing almost every snap, and is someone his team needs to win. A few weeks ago I watched him at practice as he went back, after finishing his run, to help along a teammate who was struggling. Not long ago that struggling kid was Joey, and it is through three years of consistent hard work that he has changed his situation.

From football my boys are learning how to be part of a team, how to be counted on and, best of all, how working hard at something over time can bear great fruit. They are learning how to win, how to lose and how to help lift up another person for the greater good of the team. They are learning how to receive praise when they've earned it and honest criticism when they require it.

If I could have known that first week of football three seasons ago how much I would come to appreciate this sport that, at the time, I thought was going to break my firstborn, I wouldn't have believed it.

Go Rebels!

Finally, I'm Queen!

2010-11-04T22:39:00.001-07:00

So what if it's of a hive of bees? A queen is a queen.

In other Halloween news, Edward's got nothing on Tony...

Sam and his friend Darian chased eachother around all night long...

And Bella flashed her winning smile, oblivious to her sister's plight behind her.

Joey was "too old" (his proclamation, not mine) to dress for Halloween this year (sniff, sniff) and elected to stay in to watch the Steelers/Saints game rather than take the neighborhood for all its candy.

How is it that he's too old and I'm not? Perhaps I'd better not think about that too much.

Where's McDreamy?

2010-10-26T11:34:00.000-07:00

Life has been a medical drama as of late. I would so much rather watch this all on Grey's Anatomy with a big bowl of popcorn than experience it all myself! Nonetheless, after many stressful days we have had a number of happy endings that I thought I would share.

First of all, Joey has had a very swollen lymph node under his jaw for over a month now. It is just about a square inch in size and is very noticeable. It looks like he's storing a golf ball or a walnut in his neck. His pediatrician tried antibiotics, thinking it was infected. They did not help, so he was referred to an Ear-Nose-Throat specialist. That doctor ordered a CT scan, a fine needle biopsy and six buckets of bloodwork. After nearly two weeks of waiting, we have finally learned that the biopsy is non-cancerous (as you can imagine, that is what we were mostly worried about given my history) and shows, basically, nothing at all. He has now been referred to a Pediatric Infectious Disease specialist at UCLA for follow up. I spoke to this new doctor on the phone today. After reviewing Joey's case he feels that this is probably a non-specific viral infection (in other words, something we humans haven't identified yet) that will probably resolve on its own in a few months. He will see him next week and will follow through with him until it is resolved, but he basically told me not to worry, so I will try not to! Whew!

Meanwhile, I myself had my routine PET/CT last week and received the results yesterday. Overall, the scans look great as far as the cancer is concerned, but I have developed some sort of lung infection (as anyone who has seen me in the last six weeks can attest to, since I can hardly make it through a sentence without coughing). I now have a pulmonologist who is reviewing my scan images and may or may not decide to stick a tube down my throat in the next few days to pull out some of what's in there and analyze it. The fun just keeps on coming! He assures me that, given the relaxation drugs they will give me to keep me from gagging, I might actually thank him rather than hate him after the procedure. I will reserve judgment on that.

My oncologist's concern is the possibility that my anti-cancer drug is causing this infection, which is why he is so all over this. Since my drug is untested, he has to be careful with any side effects that show up, as they could be medication-induced. It is probably a standard cough, especially since Jay and Lindsey also had one, but, as Dr. Glaspy put it, he did not save me from cancer to watch me die of a lung infection that he could put a stop to. Have I mentioned that I like him? A lot? Well, I do.

So, that's about it from here. I have to close so I can go pick up Julia from school--they just called to tell me she's sick. Why am I not surprised?!

Happy National Metastatic Breast Cancer Awareness Day

2010-10-13T11:11:00.000-07:00

You've probably noticed that it's "Pink October". Everywhere you look there are pink ribbons intended to make people aware of breast cancer. I think we can safely say that, by now, just about everyone is aware of it.

Most of the time, breast cancer reports are accompanied by survival stories--courageous tales of women who have taken a stance against this nasty disease and beaten it. Happily, there are many such stories.

Very rarely does a news report focus on those 160,000 or so of us that are living with metastatic breast cancer--that which has spread to other parts of the body. This is probably because there aren't very many happy endings in this subset of cancer patients. It is not inspiring to fund research for those who, statistically, only have an average of three years to live. People want to help those who can win, and more often than not those with early stage breast cancer CAN win. So I completely understand this focus.

Many women with metastatic breast cancer feel left out and overlooked. I know this because I am active on discussion boards for those in my situation. Although I personally am delighted by any research or awareness done, as it ultimately benefits us all, I nonetheless am happy to report that today is National Metastatic Breast Cancer Awareness day. The intent of this day is to educate the general public about those of us living with more advanced breast cancer. And while, no, it's not curable like early stage breast cancer, it IS treatable, and we are living longer and longer with this chronic condition. I, for one, plan to be here much longer than average!

There is a nice article today about it in the Huffington Post, here.

Now that you know, have some cake or something!

Two Lessons Learned?

2010-10-11T21:10:00.000-07:00

One thing about driving a fuel efficient car: it's not very fast going uphill. It COULD be, if I took it off of eco-mode, but since I got it for its gas mileage, I simply won't do that. Therefore, I have recently become accustomed to semi-irate people behind me, tailgating and gesturing until I can graciously move over and let them by. Now, I am not moving at unsafe speeds, mind you. I'm simply not engaging in the speed demonics of the drivers in my area, which irritates them to no end.

A few days ago, as I was moseying up a freeway on-ramp, I noticed a motorcycle so close on my tail that I could hardly see him in my rearview mirror. I was thinking to myself, "That's really not smart, to tailgate someone so closely especially when on a motorcycle."

Simultaneously, I noticed Bella, who in this car can easily reach the window button for the first time in her young life, dangling a little pink purse out the window. I had just finished talking to her about this on our last car ride. I explained that if she let go of whatever toy she was holding, she would never see it again. She seemed to take it to heart and rolled up her window at the time, but here she was just a few hours later doing it again. I had not noticed earlier or else I would have rolled up the window and engaged the lock.

Before I could fully process these two concurrent events, I witnessed, in my rearview mirror, the pink purse fly out of Bella's grasp and solidly thwack the motorcyclist in the head. Thankfully, he did not swerve or falter (for if he had, this story wouldn't be quite so amusing). I watched in horror as he removed one hand from his handlebars so that it could be put to maximum gesturing use. He shook his fist, he gave me a, "What the heck?!" and then he passed me on the left. All of this happened in a split second. Bella still hadn't even time to understand that she had lost her purse.

As I slowly began to understand what had just happened (about the time Bella let out the first of a solid 20 minute wall of wails), I was struck with the poetic justice of it all. Dangle a toy out of the window? You will surely lose it. Tailgate at a dangerous distance? You're sure to regret it.

How lovely to quite passively instruct both a preschooler and a motorcyclist in one fell swoop.

My Wish is Granted

2010-09-28T13:07:00.000-07:00

There is a metastatic breast cancer conference in Indianapolis in mid-October that I really want to attend.

So much of the information and resources available on breast cancer are mainly applicable to early stage patients--once metastases are diagnosed, it is a whole different ball game, and this conference is solely dedicated to treatment and quality of life issues for those of us a little farther down the line with this disease.

I registered for the conference awhile ago thinking that I would use Jay's air miles to fly there. But, alas, when I went to book my flight I found that my travel dates were blacked out on all three of the airlines we use miles on. I had never considered that! So, I decided that our family had other financial priorities and set about canceling my plans.

As I was just about to notify the group of ladies I was planning to meet there (united through the message boards at breastcancer.org, a wonderful and active forum for those grappling with the ins and outs of breast cancer of all types), I took one last visit to the conference web site to see what I would be missing.

That's when I noticed the "grant" section. It stated that anyone with metastatic breast cancer who would not be attending the conference due to financial concerns could request a grant for airfare. I thought, "Hey, that's me!" So I wrote and asked for airfare.

Within a few hours, my grant was requested! Genentech (let me tell you, I am beginning to like that company more and more) and the Susan G. Komen foundation have sponsored my airfare so I can attend this conference without straining my family's finances. I am positively giddy!

So, off I will go in October to learn about all the latest and not-yet-to market treatments for metastatic breast cancer, to meet others who are taking the same drug as I am, to attend Q&A panels where I can ask every question I've ever had about all things cancer and treatment related.

I am delighted, and totally grateful for the opportunity.

I'll Bet She's Never Heard THAT One Before

2010-09-23T13:23:00.000-07:00

Lindsey is working on a book report for school. As part if it, she has to write down the first sentence of the book she just read. This she will read out loud to the class when she presents her report later this week. No problem, right?

Wrong.

Lindsey came to me very upset because the first sentence of her Newbery Award Winning Book called Al Capone Does My Shirts has a *bad word* in it. Indeed, the phrase, "bird turd" happens to be in the very opening sentence of the book. Go figure!

(Although, if you know the book is about life on Alcatraz, and if you've ever been there yourself, you'd know why that was an appropriate opening line.)

"Mom!" she wailed, "I can't say 'turd' in front of the class! I'll get in trouble and they'll laugh at me!"

As I choked back my laughter and attempted to put on my concerned parent face, I assured her that she could not possibly get in trouble for following instructions for a book she is most certainly allowed if not encouraged to read. I read it myself so I know that it is a clean, decent book. It just happens to open with an attention-getter.

I suggested that if she was concerned that she should talk to her teacher about it. But, no. She is way too shy to broach this particular topic. So guess what I got to do tonight? That's right! I wrote a note. To Lindsey's teacher, telling her about this whole turd situation and could we please work something out, as Lindsey's progress on her report has stalled out of sheer panic.

As I wrote, I wondered if she had ever received such a note in her teaching career. I have certainly never written one like it. I'm also pretty sure I've never written the word 'turd' before today.

I think I liked my previous status better.

Today's Embarassing Preschooler Comment

2010-09-21T21:08:00.000-07:00

Bella and are in mass today, at the really quiet part after communion, when out of the blue she announces loudly, "I miss my OLD daddy."

What?!

Who's her new daddy, that's what I'd like to know! (And probably so do the dozen or so people sitting near us that must have heard her.)

Update: Turns out, she was talking about her great grandfather who she never met. She finds it unfair that she never met our grandparents and has been asking to see pictures of them and so forth. Mystery solved! Just took me a few days to get to the bottom of it.

Insightful

2010-09-15T20:56:00.000-07:00

We have a new car! Well, it's almost 2 weeks old now, but that's still new, right? I'm bubbling over with enthusiasm for it, so I just have to share.

After examining our budget and our driving needs carefully, Jay and I decided that we really had to get a fuel efficient car. Truly, we couldn't afford NOT to. We were spending upwards of $700 per month on gas given how often we go to Los Angeles now, and the fact that we have one car that gets 18 miles per gallon and another just 10. Moreover, since Jay has our Toyota van parked at the airport not infrequently, I am driving around in the huge gas guzzler with only one or two children during the day--rarely do I have all the children with me at once and need the giant van.

We tracked how many miles we were driving and calculated how much we would save in gas by adding a 40mpg car to our garage. We realized a new car would pay for itself while giving us the security of having a more reliable car to take to Los Angeles (the Toyota van is rapidly approaching 200k miles and is starting to require frequent repairs). Plus, if we drive our big church van less, it will last longer...hopefully until we don't need it anymore. Seemed like a no-brainer to us!

After researching all the available options (we seriously considered four cars in all), we settled on the Honda Insight Hybrid. After driving it nearly 1300 miles (in just 12 days--I TOLD you we drive a lot!) we couldn't love it more. We have averaged 47 miles per gallon and everything we read tells us that the mileage improves over time as we get more used to driving efficiently and the car gets broken in. This beats the numbers in our spreadsheet, so it was even more definitely a good decision. It was quite inexpensive for a new car...and Honda is having its 2010 clearance right now so they are offering all kinds of favorable deals.

Our favorite part about the Insight is the feedback it gives the driver. It actually helps you to drive it more efficiently. In some ways, it's like a giant video game. You earn "leaves" on your screen for driving efficiently and you lose them when you accelerate or brake too fast. It's all about slow and steady wins the race. When you drive efficiently for a certain amount of time you can earn trophies and more layers of leaves on your "tree". It's pathetically fun. Plus, you can watch your real time average of mpg and it catalogs your last three trips along with your current one, so you can see how you're doing over time (or criticize your spouse for their less than optimal fuel efficiency, if that's what you prefer to do with the information).

At any rate, we love our new addition and highly recommend the Honda Insight to anyone who might be in the market for a more fuel efficient car. But hurry...the 2010 clearance is ending soon (oh, and get the internet price...it's quite a bit less than the sticker!).

Take Five

2010-09-06T08:38:00.000-07:00

The venerable Cardinal Newman will be beatified by Pope Benedict later this month. If you are interested in learning a little more about him and his writing in the wake of this event, I recommend this approachable book, co written by Mike Aquilina and Father Juan Velez: Take Five: Meditations with John Henry Newman.

If, like me, you like to do a little spiritual reading each day but find it difficult to fit it in, this book is a perfect read. It is designed to be consumed in five minute chunks and takes the extensive works of this great author and boils them down to their most relevant points. It also puts the work in the context of his life, which helps to understand where he is coming from.

If you are interested in learning a little more about Cardinal Newman, especially since we will be seeing a lot about him in the news over the next few weeks, this is a good source.

Happy reading!

Now That's A Friend

2010-09-04T12:16:00.000-07:00

This morning was "picture day" for my football players and cheerleaders. They had to be at the field in full uniform by 7am. No, that was not a typo. 7am.

Football players? No problem. Roll out of bed, no fuss, no muss. Cheerleaders are an entirely different story. They require hairdos that match their team. They must have the correct (out of three, mind you) hair bow. They go out with curls. They need hair product.

I am terrible with girl hair. TERRIBLE. This is not a good thing for a mother of 4 girls. When I got the requirements for the girls' hair a few days ago, I panicked. Lindsey had to have her bangs french braided into a high, curled ponytail. Julia's was a little easier, just a high curly pony, but still quite a challenge for someone like me. I was stressing to my neighbor about this and, in typical Robin fashion, she set about solving it for me.

She found our good friend Julie, who has been doing cheer hair for years, and before I knew it Julie and her daughter Alyssia (our long-time babysitter) arrived at our house at 6am this morning armed with curlers and mousse. The result was great hair, unified teams for both girls and a really relived mom (me!). Not to mention how happy my girls were that their hair actually got done correctly!

If I was unsure, before this morning, as to whether or not I had good friends (which, happily, I wasn't), I DEFINITELY know it now. Thanks, ladies.

Denied

2010-08-27T11:42:00.000-07:00

Today the FDA denied Roche's application for fastrack approval of TDM-1 based on what seems to be a technicality. It was generally thought, given the convincing results of Phase II trials conducted in heavily pre-treated woman, that the drug would be approved for commercial use in the first months of 2011. It has now been delayed until at least mid-2012.

You can read the full story here.

This is devestating news for women with HER2 positive breast cancer. This development does not affect me directly because I am guaranteed, through my participation on the clinical trial, to have uninterrupted access to TDM-1 as long as it continues to work for me. But indirectly, I am sad, mad and frustrated for the thousands of women who did not qualify for clinical trial (the requirements are very specific) and will run out of time before 2012 arrives. I know I would have, had I not been accepted into the trial.

TDM-1 (not at all discounting divine intervention) has saved my life, plain and simple. It is a travesty that women who have no other options cannot receive this drug.

I certainly understand the importance of properly conducted clinical trials. I definitely believe that drugs, before they are released to the public, need to be thoroughly evaluated. But why isn't there a provision for the compassionate use of drugs which, though not completely evaluated, show such promise that they just might turn the tables for someone who has no other option and is surely going to die without at least a try? It seems to be only humane.

In the meantime, keep at it, Roche--and I'll keep providing you the data you need to help bring this baby to market.

At Last It Has Arrived

2010-08-24T08:51:00.001-07:00

This year we officially gave up the pretense--we are not a soccer family, or a baseball family or a basketball family. We have participated in those sports in the past only to kill time until the real action begins, so this year we didn't bother. We just waited. Patiently. And now it's time!

Last night Joey and Sam both opened their season with a scrimmage and did pretty well. They missed some blocks, they were not perfect, but overall it seems that we are in for a great season. Both boys are playing first string offense, Joey at Tight End and Sam at Tackle. This is a huge accomplishment for Joey in particular, as he has worked hard for two years to have a chance on the starting line. Joey is also starting Defensive End and loving it. Jay caught this action in particular last night:

This is Joey charging the running back behind the line of scrimmage. He completed the tackle, resulting in a loss of 5 or 6 yards for Palmdale. Good times, good times.

This, of course, is Sam. He shows a lot of promise and has no fear, so I think he will have a great season. By the second half last night he found his groove and was consistently driving his opponents back a number of yards. Number 68, by the way, was Jay's high school number, so it's pretty neat to hear them call another Di Silvestri by that number over the loudspeaker.

Welcome to fall--we are definitely fans!

Two Weeks Under His Belt

2010-08-21T15:33:00.000-07:00

For those of you wondering what I finally decided to do with my little man Tony, here is a photo of him at pick up time during his first week of Kindergarten at Valley View, our local public school.

So far, he absolutely loves it and I feel comfortable that I made a good decision. We are calling this "Kindergarten 1", and he knows that he will be going to Sacred Heart next year for "Kindergarten 2."

Only time will tell if this was the right thing to do, but as parents all we can do is the very best we know how to do at any given moment...and for me, this was it.

Thanks to you all for your willingness to share your opinions and experiences in this matter--ulitmately, it was all of your comments that let me to my decision.

Scanxiety Alleviated

2010-08-18T19:22:00.000-07:00

Just got the results of my latest PET/CT and bone scans...everything is stable, thanks be to God.

My favorite quotes:

-"No evidence for solid organ metastases." (Hello, beautiful liver of mine!)
-"Stable metastatic disease to the axial and appendicular skeleton without metabolic activity."
-"No new nodules."
-"Subcentimeter right and left axillary and subpectoral lymph nodes remain stable."

What does it say about my life that these lines read like the finest poetry to me? (That is a rhetorical question, by the way.)

So, to summarize, some disease remains and doesn't seem to be going away. However, it is not active or growing, nor is it on a vital organ, so it does not impact me at the moment. Treatment will continue as is for another nine weeks, at which time we will scan again and see where we are.

Here's to another nine weeks. Yippee!

The Good Archbishop

2010-08-10T12:41:00.000-07:00

Last week Jay had the pleasure of meeting Archbishop Jose Gomez, the new co-adjutor archbishop of Los Angeles, in a small group setting. The Archbishop celebrated mass, visited both before and after with the attendees, and stayed for dinner as well. Jay was particularly impressed that Archbishop Gomez was among the first to arrive and the last to leave, making sure all who wanted to speak with him had the chance to do so.

All reports of the Archbishop's kindness, generosity of self and obvious love of Christ were confirmed by Jay, who was beyond thrilled to have the opportunity to speak with him during the evening. Jay told the Archbishop about me and asked for his prayers on my behalf, which he readily agreed to offer, even asking Jay my name twice to be sure he had it right. Quite humbling for me, I assure you!

We are very fortunate indeed to have this man as our new Archbishop. I wish him all the best in his tenure in Los Angeles.

Health Update

2010-08-08T13:34:00.000-07:00

It has been awhile since I've posted anything about my health (how's that for a postive change!?) and I know many of you are wondering how I'm doing, so I thought I'd take a minute to share what's been going on.

Right now I am exactly where I want to be: my last few scans have shown no active cancer, only evidence of where cancer has been. My doctors tell me that Stage IV cancer cannot be cured, which means that even when the cancer is inactive and too small to be seen, it is still there lurking and a potential threat. Therefore, they use words like "control" rather than "cure", and "stable" rather than "clear". At the end of the day, this is all just semantics, and the summary is that I'm doing as well as I could possibly be doing and can potentially remain in this state for years to come.

Or, it could all change at any time, which keeps things exciting.

I will continue with my treatments of TDM-1 every three weeks as long as my liver can process the medicine and as long as my heart muscle is not damaged by it. So far, both of these measures are just fine. The treatments vary in how hard they hit me--some are hardly noticible and some deal me a bit of a blow, but nothing life-stopping. I am truly fortunate in this, as it means that I can continue treatment without giving the cancer a break to regroup, as I would need to if I were on traditional chemo.

I will continue to be thoroughly scanned every nine weeks as long as I am in treatment. I will always post those results here as I get them. My next scans are this Thursday and the following Monday so look for news probably around the end of next week.

I will not be having surgery. My oncologist and surgeon agree that once the cancer has spread around as mine did, there is no benefit to surgery at the original tumor site. Plus, there is no detectable tumor left in the breast anyway, so they would basically be cutting off a healthy breast to prevent nothing. I am good with this.

So, that's about it for now. The medicine is working beautifully, I feel pretty good most of the time (more often than not I feel normal, which was unexpected six months ago), and I am hopeful for a good, long run at this status quo.

Thanks for keeping me in your thoughts and prayers for so long.

Decisions, Decisions

2010-08-05T19:27:00.000-07:00

Tony's birthday is in July. Since he just turned five, he is eligible to start Kindergarten at Sacred Heart this year and, until recently, I had no doubts that he would be doing just that.

In the last few weeks, however, I have been strongly contemplating holding him back for a year and having him start Kindergarten next year when he has just turned six. If I send him now he will be the youngest in his class (or close to it), and if I wait he will be among the oldest.

I have heard many arguments in favor of holding him and few in favor of sending him. He himself likes the idea of going to our local public school for a year of Kindergarten before starting "for real" at Sacred Heart, especially since his very good friend will be doing the exact same thing. This is the same public school that gave Joey such a positive experience, so I do not worry about sending him there in general.

By all tests, Tony seems ready to start Kindergarten. Yet, giving him an extra year to mature (especially since he is a boy, and since our children are notoriously handwriting challenged anyway) and develop his fine motor skills seems like it might give him confidence in the long run. If he ends up struggling academically, I will always kick myself for not having done this. Plus, if he ends up being bored, I can move him up easier than hold him back later, right?

I am interested to see if any of you have an opinion about this. Valley View starts on Monday, so I am going to have to make a final decision over the weekend one way or another. Have any of you held your children back or started them early? What have you done with your "summer birthdays" and how have they fared? Any advice or thoughts are appreciated!

Bypassed

2010-07-30T06:28:00.000-07:00

The fire moved southeast and passed us by. The house smells like smoke and the sky is gray and ashy, but thanks be to God we are all fine.

Bless the firefighters who have been up all night defending our homes and may they continue to be successful as the fire threatens other parts of Palmdale!

New Fire Photo

2010-07-29T21:52:00.001-07:00

Here is the current situation, as viewed from Lindsey's window. The power of nature is astounding...makes one feel very small and insignificant.

Fire!

2010-07-29T20:41:00.000-07:00

It's big, it's moving fast, and it's too close for comfort. Please pray for all of us who are in the path of this beast.

Above is the current view from Lindsey's bedroom window (a bit blurry, but you get the idea).

My mother in law, who lives about a mile and a half away from us, was just evacuated, so we are preparing to go as well. No small feat for a family of our size, to be sure.

Hopefully it won't come any closer. Hopefully the ring of fire fighters waiting for it at the bottom of the hill will knock it out before it threatens us. Hopefully no one will lose their lives or their homes.

Off I go, to decide what goes and what stays. Talk about a grounding prioritization! I'll keep you all posted, of course...