Scan Results and What's Coming Next

The scan news is pretty good overall. My liver and lungs remain clear, which is so very important. I have a new lytic lesion on my T-9 Vertebrae (which explains why my back has been hurting of late, but how I was hoping this was just garden variety back pain!). But most significantly, I have a new brain lesion, in the right posterior lobe. It is still small, 5mm x 7mm or so. So, the question is, do we watch it and see what it does, or do we get it out of there right away.

Complicating the matter is the fact that I have Blue Shield and UCLA and Blue Shield have fallen out of contract (as I mentioned in another post). I have one treatment left with my current oncologist as my continuity of care runs out on March 31st. They have been clear that these issues will not be resolved within that time, if ever, so I need to find a new treatment facility.

Dr. Selch, my radiation oncologist, is one of the very best doctors in the world at treating brain metastases stereotactically (one single very targeted and very strong dose of radiation) which would mean no cranial surgery for me. UCLA in general is the pioneer of this stereotactic radiosurgical procedure, and if we are going to be removing this bugger, I want it done by Dr. Selch before I go to someone new. I know there are many excellent doctors in LA County, but I feel so comfortable with the ones I have, especially where my brain is concerned, that I am going to squeeze all I can before I have to move on.

So, I saw my radiation oncologist and my neurosurgeon yesterday and both are willing to push this through within my time limits and definitely recommend that we follow the path of immediate removal. They will be starting with another MRI, this one sliced ultra thin to 3mm. They warned me that when they slice that small they may find another lesion or two in which case they will take those out too.

I can't say I am surprised to learn I have a new brain lesion because, if I am like 99% of people with brain mets, they are likely to keep popping up every few months and my life will become like a giant game of whack-a-mole. I can say, though, that I loved these few blissful months of not knowing and just hoping that I would get a completely clear scan.

Again, this was not a bad scan. What is there is completely manageable and not currently life threatening. Nothing is out of control right now. It just means I have more treatment, sooner than I thought. But it is my understanding that stereotactic brain radiation has very few side effects and I shouldn't go through anything like I did with the WBR. Don't know yet what role Decadron, the evil steroid, will play in this but that will have a lot to with how I view the overall experience, I'm sure.

In the meantime, does anyone know of an outstanding medical oncologist at Cedars-Sinai? I already have a referral for a radiation oncologist, so we are getting there!

Almost Got Me

To my complete delight, I am back to cantoring. A light schedule to begin with as I get my sea legs back, but ramping up to normal as we approach Lent and Easter. I honestly did not know if I would ever sing again, and I cannot describe my joy at once again being able to "pray twice" as is so often said of church singing.

When I sing, I don't just hear the words as I do when they are spoken--I FEEL them. It's hard to explain, but when I am singing at mass is when I feel closest to God, and I really, really missed that.

For a few months after my brain radiation I had a significant general tremor that seriously affected my voice. I thought after awhile that it was going to be permanent, but as the Decadron cleared my system the tremor slowly left me and I found myself able to sing more or less as before, but with a little less breath control thanks to the bout of pneumonia, I suppose.

So, the reason I am telling you all this? When I am singing, I feel almost as if I am having a conversation with God. Some songs are written from his voice and some from ours. When I am singing one from his voice, I concentrate on what he is telling me that day, and when I am singing to him, I am thinking of exactly what I am saying to him, even though the words are someone else's, technically. It is a near perfect form of prayer for me.

Today we sang a song at Communion called "Our Blessing Cup" by Bob Hurd. Anyone who regularly attends mass anywhere should know this one. Anyway, I have sung this song a hundred times but never really focused on verse four, probably because we don't always get to that verse, and my perspective on life is quite different now so it wouldn't have meant as much to me before. All I know is that when we were practicing on Thursday I could not make it through the verse without crying. Happily, I made it through just fine at mass today because I had time to prepare myself, but I was worried it was gonna "get me"!

It was as if I were in a private conversation with God in front of the whole congregation:

Verse 4: "For you have heard my voice, for you have heard my pleading. Though death surrounded me, you heard and answered me."

A brief line, but it made quite an intense connection for me, because I believe every single word.

The Blue Shield Blues

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!

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

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!

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!

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

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

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

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

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

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

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

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

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

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!

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

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

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

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.