Friday, November 26, 2010

Eight already

My darling Rebecca,

Eight years ago today you entered our world, and changed it, for the absolute better.  I'm still wrapping my head around you being eight years old.  I can still vividly remember sitting in my hospital room on our first Thanksgiving, when you were two days old.  As I sat there, I calculated when your birthday would actually fall on Thanksgiving, and figured that it would happen on your seventh birthday.  I couldn't conceive of this tiny baby that was you, ever being seven.  And now that is a year ago!

Your birthday celebrations were quite fun.  Like we did for your sister, we had your family party at the cabin at one of our local parks.  This time it didn't rain, so you and your cousins were able to play at the nearby playground.  The next day, you got to have a 'friends party'; we hadn't done one of those in a few years.  This year was a good time to have one, since there are a lot of girls in your class at school this year who you didn't know from first grade, and I hoped a party would help you all to get to know one another better.  You chose to have the party at a local paint-your-own-pottery place, and everyone had a blast.  Your friends each painted an animal figure from a few choices you had pre-selected - an elephant, a giraffe, and a ladybug.  As the birthday girl, I let you pick a larger figure for yourself, and you picked an angelfish, which you worked very hard on.  For refreshments, we served cupcakes, which you and I made that morning.   We'll be able to pick up your birthday item tomorrow; I can't wait to see how your fish came out.  Last year you attended a birthday party at this same place, and while there, you painted a small fish figurine for me, as a welcome home gift since I had just returned from Columbus and my final week of IL-2 treatments.  Your aunt Sherry took you to the party so that I could stay home and Daddy could deal with Carly, and she paid for the fish so that you could give it to me.  It is beautiful and has pride of place on top of our china cabinet.

Today we went back to paint more pottery, since we'd had such a good time, we wanted to make some Christmas ornaments, and they were offering half off on studio time for Black Friday.  Aunt Sherry came with us, along with Aunt Barbie and your cousin Marty.  We had a great time making lots of items... some of which have to remain secrets for now as they are going to be gifts later. It was a fun way to spend part of your birthday.

Second grade has been a change from first grade for you, but you've adapted very well.  Your teacher this year started out the year with a stricter attitude than your teachers last year showed, but as the year has gone one, and as I predicted, you've gotten to know one another better and so you are enjoying being in her class.  At your recent parent-teacher conference, she gave you glowing reviews, telling us that she had nothing bad to say about you, and that she wished all her students were like you.  She told us about the work you're doing and gave us examples of how well you're working in class.  One neat example was about you wanting to search online for recycle facts during recycling week.  You didn't know how to spell the word 'recycle' to enter it in the search bar.  One of your classmates was laughing about that, but you thought about how you could find out the spelling without asking your teacher.  You remembered that the word was written on the side of the recycle box in the classroom, so you went over to the box to memorize the spelling.  Your teacher was impressed with your resourcefulness; so were Daddy and me.  We are constantly amazed... well not really amazed, knowing you as we do, but impressed by the way your mind works.  You are a big note writer, and your notes are well written.  You use notes to start conversations with us sometimes, and it's a great idea.  You adore reading and have really started to embrace chapter books.  As a lover of reading myself, I am thrilled to see you loving books so much.

Dance is still a passion of yours.  For a while you preferred your jazz class to your ballet, but now you seem to love them both equally.  I got to watch your whole ballet class this week, something I don't normally get to do given my work schedule.  You are focused and you remember a lot.  It was great fun to see how much you've learned and how well you apply it.  You'd like to try tap dancing as well, but it's not been easy to fit into our schedule so far.

You branched out into some team sports this year too.  During the summer you played softball for the first time, and really enjoyed it.  You are a good fielder and a better hitter.  We all enjoyed going to your games.  Then this fall you tried soccer and found that you really like it.  Even though some of the girls have played in prior seasons, you got up to speed quickly.  At your practices I could see again your focus and your desire to "get it right" when practicing different moves.  During the season you found your niche playing defense, and prevented many points from being scored against your team.  Your coaches had lots of praise for you, and Daddy and I were really proud to watch you play.  One Saturday your league had a 3 on 3 tournament.  Your teammates were girls you didn't know, but you did fine with them.  At one point two moms I didn't know were standing behind me talking about a really good player on the field.  I realized that they were talking about you!  That made me feel extra proud since they didn't know you, didn't know me, and so were merely noting your skills.  You are excited to continue soccer in the spring, and so I am happy to go be a soccer mom while you play.

This fall you got your first pair of glasses, as we discovered that you are a bit nearsighted.  You've adjusted to them very well.  I told you that I was envious that you had such cool choices of frames; when I got glasses for the first time at age eight, the choices were all ugly!  You can see so much better now, especially when reading, and so I am glad that you have the glasses.

You are truly a light in my life, Rebecca; I am so happy and proud to be your mom.  Tomorrow I will post some photos of you.  :-)

Friday, November 19, 2010

Where to begin...

... when you've been avoiding writing?  Admittedly, my days have been so full, and my thyroid tanked (again) so I was pretty fatigued until my medication was adjusted (again).  But more than that, I think I've just felt at a loss for words at times, and too full of them at others.  A few of you have kindly reminded me that I haven't posted in a while, and knowing that you care makes me feel all warm and fuzzy... even while I'm apologizing for not keeping up to date here.

I'll begin with good news.  I finished my second cycle of Sutent at the beginning of November, and had scans two weeks ago.  Chest CT, abdominal and pelvic MRI, blood work and a doctor visit all in one day.  Amazing how tiring that was... of course I was still hypothyroid at that point but didn't know it.  My appointment with Dr. Rini was at 1PM.  Unfortunately, at that point he had results of my CT (clear, still, excellent) but the MRI results had not come in yet.  Since I'd taken the day off from work, I had no problem waiting, so I sat in the exam room reading and playing on my DS.  He checked in once, then Shari, his NP, checked in once, both offering me the option to stay or go.  At about 2:30 I thought, maybe I will just go, but then a few minutes later the door opened to a smiling Dr. Rini.  He was smiling because the news was good.  There was shrinkage of all masses in my liver, shrinkage of the mass in my pelvis, and two masses in my right kidney, which I hadn't realized were there, disappeared.  So, the Sutent is definitely doing its job.  The plan is for for me to go through two more cycles, and be scanned again around late January.  As long as the Sutent is still doing well, and I am still tolerating it, we'll then go three cycles before scanning again.  It was wonderful news that was well worth waiting for.

The side effects of the Sutent are not fun, but I am soldiering through.  This time my mouth sensitivity was pretty pronounced, and at the end of the cycle I had a bump in the middle of my tongue toward the back that was super annoying.  I am very sensitive to temperature and seasoning while on the drug... one night we were eating meatloaf for dinner and I thought, crap, I put in too much of the seasoning I normally use.  However, I noticed that Jim and the girls were all eating without complaint... the girls would definitely speak up, and loudly, if the meatloaf was "too spicy".  I asked Jim, "is the meatloaf too seasoned, or is it me?"  It was me.  One day I went down to the cafeteria at work with a couple of my team mates.  We were wondering what one of the soups was like, so two of us tried a spoonful.  I immediately burned my tongue, and had a red spot on it for the rest of the day.  That will teach me... and the soup was not all that great anyhow.  Probably a good thing, because if I'd bought it, I wouldn't have been able to enjoy it anyhow.

You'd think that with such tongue and taste problems, that I'd be withering away due to some amazing weight loss, right?  Not so much... I realized late in the cycle that I was eating even when it wasn't comfortable to my mouth, trying to soothe my feelings, I think.  Now that I am on this targeted therapy, I am definitely more aware of the potential for this cancer to not just go away, to not just be able to be cut out of me as it's done in the past.  I am getting back on top of things lately, so hopefully I can overcome that bit of panic and not sabotage my health further.

These feelings of terror/sadness/mortality have been heightened by the recent deaths of a few people in the kidney cancer community.  The passing of my friend Angelo was the most upsetting, as he and I shared the bond of being parents to young children.  When I first started investigating treatments for metastatic renal cell, I happened across Angelo's blog.  At that point he was undergoing HDIL-2, and I read his story with great interest.  The IL-2 did not work for him, but he was able to get into a clinical trial that did wonders for his mets.  Unfortunately he had brain metastases, and while they were able to be treated, swelling in his brain causes seizures, and the steroids used to treat it suppressed his immune system.  He had so much optimism about beating his cancer, and the next thing anyone knew, he was gone.  It really shook me to learn of his death.  We'd never met, we'd never spoken on the phone, but his death hit me like he was someone I saw daily.  

Angelo's story also brought back memories of my friend Deb, who was another victim of brain mets, in her case, from breast cancer.  The first anniversary of her death is coming up in a few weeks, and I still miss her a lot.  I keep in touch with her husband and her daughter, which has been wonderful.  I can only imagine how hard this last year has been for them.  She still guides and mentors me; while I don't consciously think "what would Deb do?", I notice that I've internalized advice that she offered over the years.  She was also the most optimistic cancer fighter I have ever met.  I feel that she's up in Heaven keeping an eye on me and telling me to keep fighting. 

Lots more to spill, but I need to get up from this keyboard or I will never get my day started.   This weekend will be cra-zee... Rebecca's family birthday party is tomorrow, and we're having a party for her school friends on Sunday.  Hello fun, goodbye weekend!  So, the rest of my random thoughts will have to wait before they can be revealed... I'm sure you're on the edge of your seat, no?

Sunday, November 14, 2010

A good read

Chris is a fellow member of the kidney cancer online community, and a fellow member of Club HDIL-2.  This article which he wrote for Arkansas Life is both hysterical and informative, so check it out:

And yes, Minnie, I promise an update of my own soon... it's been too long!