Friday, December 24, 2010

My Christmas Gifts

As I sit here on Christmas Eve, I feel extremely blessed. I'm home, safe and comfortable, finally in control of my environment, schedule, and diet, which does wonders for the psyche. Also, I'm finally free of the IV pole. (Maneuvering that around for 4 1/2 hours a day was quite a site. And no, you will not see me on You Tube re-defining pole dancing, as Mary suggested.) I'm doing well, eating more than I have ever eaten in my life, thanks to Zofia, and so very grateful for every healthy day.

My doctors are very happy with my progress, and I haven't had too many complications since coming home. My October 31, 2010 post mentioned Graft v. Host Disease, or GVHD, a condition where my new immune system, because it doesn't know where it is, will try to attack both me (not a great thing) as well as any leukemia it comes across (a very good thing). GVHD can be very dangerous, so I'm on meds to minimize this. Usually signs of GVHD show up between 30 and 60 days. I developed a skin rash that was determined to be GVHD the day I was discharged (Day 14). Since it's good to have a little GVHD, I might as well have it sooner rather than later. Hopefully, I'll avoid the other forms of this that can be much more difficult to deal with. Other than rendering my hands useless, the rash was not a big deal physically. It did, however, require me to start on a boatload of steroids.

I always thought that steroids are meant to build muscle mass, but apparently, not so if they're controlling GVHD for post transplant patients. I was around 90 pounds when I came home and was expecting to put on some weight when I started eating again. In spite of the incredible meals Zofia makes for me, I've only gained a few pounds. My doctor said it's the steroids, and that I may lose even more weight, as well as muscle. No wonder I don't feel as physically strong as I thought I would by now. I started to taper off the steroids, so this should get better with time.

It looks like I may have dodged one bullet with the steroids, which is the possibility of getting temporary diabetes. Although I usually avoid processed sugar because cancer feeds on sugar, I said to Zofia the other day, "We need some fruit pie and cookies!" I even broke tradition and agreed to let my Aunt Amy send me a tin of her fabulous homemade Christmas cookies. Yesterday my Arizona friend, Laura, sent me a batch of dairy free (she knows me well) chocolate chip cookies. I couldn't be happier. Zofia also made her famous homemade apple cake. Oh the choices!

I have three goals to reach by Day 100. About 50% of transplant patients end up being readmitted to the hospital for GVHD complications. I am determined not to be one of them. By Day 100, I should be able to unpack my emergency hospital suitcase. (I tried this once, just before I relapsed -- see August 24, 2010 post. I'm using a different suitcase now, so all should be fine.) Also at Day 100 I will have another bone marrow biopsy to determine if I am in remission. Since I achieved a total genetic remission before the transplant, and I had a perfect donor match, I'm optimistic about this goal. Most importantly, by Day 100 or possibly sooner, Sadie can come home again. I miss my kitty cat! She's been living with Mary and her family in Pittsburgh since I went in for the transplant because I can't be around her litter box. I can't wait to have her back home!

Although I thought I'd be incredibly bored by now, my days seem to be quite busy with post transplant care and other projects. Whenever I have a medical crisis, my mother in Arizona has a habit of presenting me with some competition. In 2006, a few days after having part of my lung removed, she fell, developed a brain bleed and ended up having a craniotomy. Last year, when I was first being treated for leukemia, she had a heart attack. This month, she fell twice within a week, which landed her in the hospital for injuries and later in rehab. She's recovering nicely, and will be released soon -- crisis subsiding.

Overall, I have to give credit for the peace of mind I have about my progress and ability to heal to Zofia. I was nervous about having a total stranger move in with me and having to care for me when I felt so sick. She has turned out to be the perfect caregiver. She's turned my kitchen into a restaurant. I came upstairs one morning to find her flipping homemade crepes! In addition to her delicious, healthy meals, she works incredibly hard, is just as OCD as I am, and she likes Bruce Springsteen! She's a friend and welcome companion who keeps me from worrying about how I would possibly do everything for myself when, at his point, I still struggle with the stairs.

Tomorrow, Zofia will be making a Thanksgiving dinner for Christmas since I was on a diet of narcotics that week. I spent the last two Thanksgivings very sick from treatments, and I'm really looking forward to some turkey and stuffing. Michael will join us and we'll have a great Christmas among friends. My very thoughtful boss, Scott, knew I wouldn't be up to decorating, so he brought over a tree, complete with decorations and lights. My place is full of Christmas cheer, and as I look at the totality of this Holiday Season, I can't imagine a more perfect collection of gifts, on so many levels. One of my biggest gifts this year has been your prayers. I know that I am surrounded with love and support, and it calms me, gives me hope and strength, and inspires me to have faith that all will be healed. I thank you deeply for this and I hope you all enjoyed a Christmas as meaningful as mine.



Sunday, December 5, 2010

New Beginnings

That was quite a November! I had the hardest three weeks of my life, and then received the gift of life in the middle of it. I'm told I withstood everything right on schedule and that 3 weeks was a short stay. I'd say I withstood the first 5 or 6 days as I usually do when receiving chemo: maintaining pretty well till the side effects hit. Then I started 3 days of another super strong drug, anti-thymocyte globulin (ATG), which is an infusion of rabbit antibodies to prepare my body for the stem cells and help prevent rejection. Then, two days before the transplant, I received 2 1-hour doses of full body radiation.

I was already sick from the rabbit juice I was getting, and the radiation just sent me on a journey that culminated in several days of side effects requiring three narcotics, including morphine. When I said in my last blog post that this regimen was "burn down the factory," it was no exaggeration. By the time Transplant Day came, Day 0, I was feeling pretty lousy. I had almost taken my eye off the purpose of this process, a new immune system. One of my doctors came in to deliver my stem cell infusion, which was a very small bag of light pink liquid, and said that she was very excited for me. "New beginnings!" It was all over in 20 minutes. Just like that. A new, healthy future. I've never felt such a mix of emotions.

Mary, always my wing man, drove from Pittsburgh 3 times in 3 weeks to be with me (over Thanksgiving too), and she and my caregiver, Zofia, helped me get home on December 1st. I'm on 4 1/2 hour IV infusion everyday at home to make sure I get enough fluids and electrolytes, but that will only be for a few more days. I'm teaching my legs and stomach to work again, and generally feeling pretty weak. But I notice a slow recovery taking place, and Zofia has been great. She cooks, shops, cleans, drives me to clinic appointments, does laundry, helps me with medications for each meal, and anything else I want her to do. The Transplant Team at Hackensack requires each transplant patient to have a full time live in caregiver 24/7 for the first 30-60 days minimum. I thought this was a bit much -- that I could handle myself maybe with some help from friends. I could not have been more wrong. So, as I write this, homemade chicken soup is waiting for me for dinner.

Today I am 18 days old. I can't go out except to clinic appointments for awhile, but at least I'll be home for Christmas and able to appreciate the holiday. I'm taking things slow, since that's the only speed I know right now. I keep wondering about my donor. I found out that he's European. (My friend Micheal said today, "Wouldn't it be funny if your donor was Julian Assange? Oh no, wait, he's Australian.") I decided to write to him a letter, which has to pass through the filter of the National Marrow Donor Program. We're not allowed to know any personal information about each other. I wanted to thank him for his sacrifice and ask if he would be willing to correspond with me. It was nearly impossible to know what to say. Knowing that Thanksgiving means nothing to him, I tried to express my gratitude.

This Thanksgiving was intense in so many ways. I am most grateful for my European perfect match. But I am also indescribably grateful to everyone who has been helping, supporting and praying for me. I hope you all had an amazing holiday.