I kept a secret from you all

Blogger friends, I have been keeping a secret from you for the past month-ish.  I didn't say anything because I had a lot of people to tell, and was very busy going to appointments almost every day.

They found more leukemia, in my cervical spinal cord and in my spinal fluid.

The good news: that's the only place they found any leukemia.  My bone marrow and gut were clear.

The bad news: I had to get 3 MRIs, one lumbar puncture (or spinal tap, which is when they go into your spinal fluid with a needle), a PET/CT, a regular CT, and an EMG, which is this weird neurological test where they use surface and intramuscular electrodes to measure muscle function.  OMG, I am so sick of tests!

For treatment I had twelve days of radiation, which finished a couple of weeks ago, and it was highly successful.  First of all it only took like five minutes, and I'm a fan of quick medical procedures, especially when they take place every weekday for twelve days.  Secondly, it has made a huge difference in the way I feel and get around.  I've mentioned that I've been having mobility problems, and getting the radiation has improved all of them.  I'm not back to normal yet, but I've regained a lot of strength and function, which is so wonderful and encouraging.  It's great to feel better every day instead of worse.  The past six months have been the hardest I've passed in the seven years that I've been dealing with leukemia (July 6th will mark seven years snce I was first diagnosed).  The physical limitations have been the worst thing I've had to deal with because they limit the things I can do, and I've never really had to deal with that before, certainly not for this amount of time and when I've felt well.  It's just so amazing to be able to do things for myself again and be a little independent.  I still have a ways to go, but at least I'm advancing.

For the rest of my treatment I'm getting intrathecal chemotherapy again.  I got it last year too - it's chemo injected directly into the spinal fluid.  This is basically a good thing for me.  I don't get side effects (knock on wood!) and I know the group of people who give it pretty well since I've been there a lot before, so I'm pretty relaxed about getting what is a pretty freaky sounding procedure.  I had my first session two weeks ago and my second on Wednesday.  They draw some fluid and send it to the lab each time to be tested for leukemia, and the results from Wednesday showed no leukemia already from the treatment I got two weeks ago!  I'll keep getting the chemo every two weeks for several more sessions, not sure how many exactly but I think my doctor will tell me on Tuesday when I see him next.

So despite the fact that there was some bad news, the most recent news is all good.  I'm feeling better, the leukemia is out of my spinal fluid, and I'm down to doctor's appointments every two weeks instead of every week.  I' really glad that I decided to defer the master's program I was accepted to until next year because it would have started last week and I would have had to drop it.  I'm also taking more time to complete the last two prerequisite classes that I would have had to finish before the start of the master's program because I just need a break.  Cancer gives you all kinds of good excuses to get out of doing things.  Hahaha.

Thank you all for sticking by me through this crappy cancer crap.  I feel very lucky to have so many wonderful people as part of my life, and it only says good things about you that you continue to support me.  Thank you, thank you, thank you.

New Post

I really don't like it when people stop updating their blogs very often, and I know that since November the most times I've posted in a given month is five.  So, my summer resolution will be to improve that number!

Unfortunately, my life is pretty boring and I don't have that much to write about!  Unless you enjoy hearing about my twice weekly physical therapy appointments.  I'm doing these 80s style exercises with steps up and down, and they're quite challenging.  Keep in mind, I can't get out of low chairs by myself right now and need a hand going upstairs too, so it's not like they're working me that hard, but I'm usually pretty tired afterwards.  I've gotten so lazy that even though I know I need to do this stuff, I really don't want to!  Can't I just magically be normally strong again?

On the plus side, no matter how much I eat I am not gaining any weight!  I'm eating tons of sweets, my mom keeps baking for me, and it's summer so there's ice cream, which we all know is my favorite, and my weight is stable and the lowest I ever remember it being.  I'm not underweight, although I could stand to gain a few pounds of muscle and strength, but hey, no complaints here at the ability to eat whatever I want and not gain any weight!  I probably just jinxed myself and will gain 20 pounds in the next month, but for now everything is good.

Sorry, that was a super annoying paragraph.  Will you forgive me for being annoying if I tell you that the steroids I have to take right now to keep the GVHD under control affect the way insulin processes sugars so I have to take my glucose and give myself insulin shots?  Here's my secret though: I usually forget to take my glucose.  But when I remember, the glucose level is okay and I don't have to take any insulin.  Maybe my horrible specialist in France wasn't so wrong when he said I was a non-compliant patient.  Ha!  He wishes he were right about something!

Hope everyone is enjoying their weekend! 

P.S. This was all meant to be somewhat amusing, so don't take it too seriously.  But if I screwed up and it wasn't funny at all, do let me know, and I'll work on my style :)

Hair and Happy Father's Day

Last weekend I had a revelation.  The last time I had a full head of hair was in December of 2009, before my transplant.  I've mentioned a few times here that about a third of my hair grew back, and we were a little unsure as to why it wasn't totally returning, if it was chemo or GVHD.  It usually takes 2-3 months for hair to fully regrow after chemo, so as the months went by I was pretty disappointed to not have my own hair, and I was using Rogaine for Men to try to make it grow more.  Baldness is the number one physical mark of being a cancer patient, and you just want it gone.  I got a couple of wigs and wore them occasionally, but it's been a long time since I dressed up or put on a wig because I've been pretty busy with treatments and being weak and not doing a lot.

Last weekend it all of a sudden occurred to me that I don't really care if my natural hair ever grows back.  It's probably been wiped out by graft versus host disease over the past 18 months.  GVHD, which is the reaction of the donor cells against my cells, can cause joint, skin, liver, eye, and hair issues (among many, many others!).  I realized on Saturday that my hair has been the victim of GVHD and is gone forever, and it really wasn't a big deal.  I was surprised when I reread the entry I linked to above because I was so sad at that time at not having my own hair, and my attitude now is so different.

Hair is such a complicated issue when you're dealing with cancer.  Losing it is a very clear symbol of your illness, and it takes a while to grow back to your original style after you've finished treatment; it can take a year or more depending on your hair.  Cancer makes you feel pretty unattractive and being bald, especially for women, makes you feel even uglier because it's so abnormal.  Everything else in your life changes so much, and you don't even look like yourself anymore.  You have to come to the realization that if you need to lose your hair in order to live, that's okay.  I am really lucky because my dad has been bald as long as I can remember and always been very cool about it, so the fact that I am bald has never been a problem for me, just the fact that cancer made me bald, if that makes sense.     

So this week I wore the Aubrey wig almost every day, and it was great.  I felt less sick, more normal, and even kind of pretty!  I really like the Aubrey color and cut, and I got tons of compliments from everyone at the hospital.  I had never worn a wig there before so it was a new thing for everyone.  There's no point in wearing a wig to a cancer center, they're all bald anyway!  You aren't fooling anyone!

Anyway, so there you have it.  I'll be a red head until I decide to switch wigs.  It's really liberating to have come to terms with this and be so comfortable with it.  Look at how much easier my life is.  I only have to wash the wig every 8-12 wears, it's easy to style, takes 30 seconds to put on in the morning... life is good!

A few words about my dad, since it's Father's Day and he's such an important part of my life.  My dad and I are very similar, and we've always gotten along really well.  He'll do things to help you without being asked, just by anticipating what you might need, and he's such a loving, caring guy, which you can tell by all of his actions.  He's also really funny and has a list of reasons why being bald is great.  Saving time and money are of course the most important reasons, but don't forget that if you're being chased by the police you can hide out in the melon section at the grocery store.  Hahaha!

Thanks Dad, for being such a great guy, and Happy Father's Day to everyone else out there.
               

Dear Weather

Dear Weather,

I don't know if the crazy weather we've had this year is due to global warming or weird weather patterns like El Nino or something, but I am not happy and I want a change!  We went through a very cool, wet, cloudy few months and didn't have any leaves on the trees until the very end of April, when it snowed too just to make sure we didn't miss winter yet.  In May we finally had a couple of days when nice temperatures and sunshine were mixed in with the rain and clouds and the cool temperatures and I really enjoyed the five days we had that were like that.  Then all of a sudden you throw this 100 degree, high humidity junk at us and we just have to welcome a horribly hot and humid summer into our lives!  Whatever happened to spring?  And why is summer going to be so nasty?  Because if this is a preview of what we're looking forward to for the next few months, it's no good at all!  Please, take pity on your poor victims and let us pass a summer with much less humidity and heat than we've had the past week.  I always recycle, I never litter, and I like nature and being outside, I'm an eco-friendly kind of girl!  I'd even take clouds and rain rather than this!  Well, not for the whole summer, but a few days a week I could put up with it.  I did live in northern France for two years, so I know how to handle rain and clouds.

Love and best wishes for a healthier tomorrow without global warming making you nuts,
Soleil

I had such a wonderful time with my visitor.  We hadn't seen each other in about a year, so it was great to reconnect in person.  I can't tell you guys enough how wonderful it is to have good friends, especially when you're going through the crap that I deal with all the time and you have people who tell you to complan to them about it, and who don't mind that you can't get out and do a lot because of mobility issues.  It was a wonderful few days and I hope she had as good a time as I did!

I had a lot of margaritas this week!  We tried a few different recipes at home while my friend was visiting, and yesterday my baby cousin had his first birthday party, at which margaritas were available (I assume for adults only, but in my family you never know!  Haha).  One was the full calorie mix, and one was the reduced calorie Bethenny Frankel kind.  Reduced calorie basically meant no sugar, so it wasn't a big hit with me.  I prefer the homemade kind with fresh ingredients.  So next time you invite me over for a margarita party, have fresh limes around.