Wednesday, October 1, 2008

Chris said it was my turn to blog and I do have some catching up to do.

Last weekend, my dear friend Tina flew in from New York and I loved every minute of her visit. Sure, I hated that I was trapped in the hospital, but Tina is the kind of friend that will hold your hand and make you forget why you're upset. I've known her for twenty years and she still continues to amaze me.

She brought me trashy magazines and pored over them with me while I caught up on what was happening in the artificial world outside. She's the kind of friend who will sit quietly with you and just knows what you need, sometimes before you do. I'll just say that it was the best weekend I've had in a while and her visit was just what I needed to help me get over the hospital blues. I love you Tina, and am just so happy you're one of my friends.

I had my third clinic visit today and it was fairly routine. I needed another bolus of magnesium since all of the chemo and meds continue to deplete my body of this vital resource. The PharmD wants me to start taking oral magnesium. These are 500mg pills and she's starting me out on one a day. If I can tolerate this, ie, the resultant diarrhea isn't debilitating, they'll gradually increase my dosage. Last year, I was taking 16 magnesiums a day at one point. This wouldn't be so bad if I already weren't taking so many pills everyday. I take 16 immunosuppressants in addition to heart medication, folic acid, antivirals, anti-fungals, antacids, anti-emetics, and what ever else I'm forgetting at the moment.

I keep asking when I can stop the cellcept. This is an immunosuppressant that makes me vomit unless I can keep a high enough level of zofran in my system. I'm so serious about this that I get up in the middle of the night to take a zofran tablet. I know I have to have the cellcept to help against GvHD, but I'm also on tacrolimus for the same thing. With the last transplant, I was off cell-cept at day +30. Today, I learned that cord transplant patients now have to continue on cell-cept until day +100. Since my latest transplant was a 9 out of 10 mismatch, I suspect I'll be on this little gem of a pill for quite some time. 12 a day. Yum-yum.

I'm still having a hard time with food, but with every day, I'm able to eat a little more. The last few nights I've been waking up between 2 and 3 am, starving. It's so bad that I can't sleep and end up stumbling out of bed to eat a small container of apple sauce just to get something into my system. This is so strange since I have such a hard time eating during the waking day. I'm still having a hard time interpreting the fact that I'm hungry when I'm awake. This happened last time and I know that it will get better with time, but I never got up in the middle of the night to eat.

I put dinner off until after 7 tonight to see if I might be able to sleep the night through. My fingers are crossed. I still get up about 4 times a night for various reasons, mostly related to the loo.

I'll see Dr. Kebriaei tomorrow and I'm hopeful that I'm on track to get out at 100 days. I know any number of things can happen between now and then, but I have to take things one day at a time. I'm determined to get stronger every day and hope to start physical therapy the week after next. I'll take things a little easier this time since I'm not feeling as well as I did last time. Don't worry, I'll push myself, but within reason. Today was hard, but tomorrow will be better, as will the next day.


Anonymous said...

Hang in there Ann. You're doing great. Just give yourself the gift of patience to heal.

With Positive thoughts and Prayers--


Susan C said...

How lucky we are to have friends like Tina in our lives.

Wishing you sleep-filled nights and hunger-filled days!

Love, Susan

Anonymous said...

Oh sweet girl- YUCK on the cellcept.

Never underestimate the healing powers of trashy magazines- I LOVE THEM too! The "articles" or captions were about the amount of concentration level I had during transplant!

Keep going-