Friday, December 23, 2011

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!

The Di Silvestris (Jay, Suzanne, Joey, Lindsey, Sam, Julia, Tony, Bella, & Natalie)
December 2011

Sunday, December 18, 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.

Tuesday, December 13, 2011

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 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.

Friday, December 02, 2011

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!

Sunday, November 27, 2011

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!

Sunday, November 20, 2011


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.

Wednesday, November 16, 2011

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.

Friday, November 11, 2011

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!

Friday, November 04, 2011

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!!!

Wednesday, November 02, 2011

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,

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!!

Tuesday, November 01, 2011

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.

Friday, October 28, 2011

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 !

Tuesday, October 25, 2011

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.

Saturday, October 22, 2011

More tests...

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.

Friday, October 21, 2011

Finally, an update!

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

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!

Tuesday, October 11, 2011

Good Scans, Not So Good Health

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.

Wednesday, October 05, 2011

An Open Letter to Carnival Cruise Lines

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

Tuesday, September 20, 2011

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

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.


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?

Thursday, September 15, 2011

40 Years Old!

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.

Sunday, September 11, 2011

A Dose of Reality (Just A Little One)

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!

Wednesday, September 07, 2011

King of Our Castle

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.

Monday, September 05, 2011

Fully Retreated

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.

Friday, August 26, 2011

Beautiful Milestones

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

Friday, August 19, 2011

Looks Like It's All in My Head

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!