Sunday, October 31, 2010

Home Again

After 6 weeks of incarceration, my counts finally came up and I'm out of the hospital! I started to think I was there for the long haul, all the way through the transplant for 11 straight weeks. But I came home on Friday, October 22, with 2 weeks of freedom before I go back in again. It took about a week to recover, but I'm now getting ready for the next phase and enjoying life at home with Sadie. I didn't realize how much I missed my kitty till I came home to all her craziness. The leaves are dropping, there's still color to be found on the hills and in the woods, and I savor every breath of fresh air.

I've been going to Hackensack about every other day for tests, appointments, screenings and more tests. Transplanting a person's immune system and eventually all their blood is very complicated. Here's the plan:

* On November 8th I'll go for a procedure to have a central line inserted into my neck. I have something similar in my upper right arm now, which makes drawing blood and receiving chemo, transfusions, medicines, etc. much easier. But they need even more access, so I'll have a souped-up version of a central line placed that day. It sounds worse than it is.

* On November 9th I'll be admitted and have all last minute pre-transplant tests and procedures. This is Day -7 in Transplant World.

* On November 10th, Day -6, I'll start a new chemo regimen that will blast away my bone marrow once and for all. I'm ready to break up with my bone marrow. It's a relationship that is not working anymore and it's time to move on. Unhealthy relationships become toxic and sometimes it's best to make a clean break. This chemo will, as Dr. Goldberg says, "burn down the factory." Once the factory is gone, there's no bringing it back. I'll have chemo and other drugs from Day -6 through Day -1.

* On November 15th, Day -1, my donor will go to the nearest National Marrow Donor Program transplant center to collect his stem cells. While I've been having my pre-transplant tests, my donor has been having a battery of tests too. A few days before his collection, he will begin getting daily Neupogen shots, a drug that will stimulate his bone marrow to make extra stem cells. This may cause him some bone pain as his bone marrow goes into overdrive. Then, as I understand it, for about 4-5 hours he'll donate blood out of one arm, the stem cells will be stripped from the blood, and he'll receive his recycled blood back into his other arm. He may need to go back for a second day of collection on November 16th.

* On November 16th, assuming enough stem cells were collected the day before, I will have my transplant. This is Day 0. It works much like a blood transfusion, and although it may seem anticlimactic, I'll be able to build a new factory. Much like any new relationship, things will be rocky at first, as my body and my new stem cells (which will create new bone marrow, a new immune system, and eventually new blood), get to know each other. It's a bit like an arranged marriage. All of a sudden, two entities will be living with each other, whether they like it or not.

* From November 17th through November 30th, Days +1 through +14, I'll be getting a special type of chemo to help minimize Graft vs. Host Disease, or GVHD, a condition where the new stem cells won't recognize my body as "home," and will launch an attack. It's understandable. If I were forced into an arranged marriage, I would launch an attack too. Big time!

A certain amount of GVHD is inevitable with a transplant from an unrelated donor. But since my donor is a perfect match, with 10 out of 10 genetic regions, hopefully this will be minimal. The upside to GVDH is that, although the new stem cells will attack my body to a certain extent, they will also attack any leukemia cells they come across. (That was the dealbreaker, and the reason we have to break up: my bone marrow stopped recognizing leukemia cells as invaders and let them begin to take over.)

* On November 25th, Thanksgiving Day, I will start getting daily Neupogen shots to get the new factory to start producing healthy bone marrow, and hopefully, this will be the last time that I have to wait for my counts to recover. If all goes well, I should be home around November 30th or December 1st.

Once home, the 3-6 month battle of GVHD will govern how easy or hard life will be. Although the factory will have been replaced, it will take time for the blood "still on the shelves" to be replaced by new blood that has learned to recognize my body as its new home.

It's a long road, which can only be traveled one step at a time. As Halloween night draws near, and the major holidays approach, I look forward to the season where everyone focuses on gratitude, blessings, loved ones, support for those having a hard time, faith in a higher power, and reflections on what really matters.

Over the past few weeks I learned of many people who either joined the Registry or were privately tested as a potential match. I can't begin to express how much this means to me. My gratitude to my donor is, of course, totally overwhelming -- something I have trouble wrapping my head around. Love for one another really does trump the negative things we do to each other, and it is with this vision of the human spirit that I take these next steps. Thank you for taking them with me.



Tuesday, October 19, 2010

Donor Found!

I almost hate to write this post, for fear that I'll jinx my good news. Although my counts continue to hover well below acceptable levels, I found out today that a donor has been found! All I am allowed to know is that the donor is a 33 year old male who lives somewhere on the planet. I also know that he is a "perfect" match, meaning that he matches 10 out of 10 genetic regions for the best transplant match possible. The results just came back from the lab, so the donor doesn't yet know that he's a match yet. Hopefully, in the next few days, he'll schedule a collection date and I will know my transplant schedule. If all goes well, I'll be admitted (assuming I get out of here) in about 3 weeks to begin the pre-transplant tests and chemotherapy, and the transplant will be a week later. With any luck, my month long transplant process will be from mid November to mid December.

I wish I could know more about my donor. After several months, I can write to him anonymously through the transplant center, and if he writes back we can communicate that way for the first year. Then, if he's willing, we can learn each other's identities. I hope he lives in a cool place for when I visit him to thank him for his sacrifice. But I'm getting ahead of myself.

The other good news I got today is that there are a few more people who are still in the queue in case something happens and Mr. 33 year old can't donate at the last minute.

A few minutes after I got the good news, I realized that today is October 19th. One year ago today I was told that I have leukemia. I began the hardest of my many fights against cancer on that day. Finding out that I have a donor today is the perfect example of yin and yang in action. Yin and yang come from the Chinese philosophy for the interdependence of opposite yet complimentary forces in the natural world. There is a perception (especially in the West) that yin and yang correspond to good and evil. However, Taoist philosophy generally rejects these distinctions, preferring to focus on the idea of balance. I prefer that interpretation too. I could use a little balance.
Yin and yang are not the only forces of nature at work here. God plays a pretty big role too. I've been praying like crazy, and I know that many of you have too, and for that I am eternally grateful. Those prayers are being heard, so keep up the good work!



Saturday, October 16, 2010

And The Beat Goes On

I was a big Sonny and Cher fan when I was a kid. As the calendar advances, I try to remember that, although the beat may not be changing, it does go on. Today is Day 31 in Treatment World. It usually takes about 25 days get someone with relapsed AML back into remission. Although Day 14 brought me great news that the chemo destroyed my diseased bone marrow, the next step is recovering healthy bone marrow so that a complete remission can be confirmed. Due to the damage that each treatment brings, starting with the first leukemia treatment last October, my marrow takes longer and longer to recover. That isn't the case for most patients, but most patients don't have problematic bone marrow due to chemotherapy 10 years ago for a different type of cancer.

So I wait, and wait, hoping that my counts come up soon so that I can go home before the transplant. If they don't, well, then I'll stay here through the transplant process, which could be another 6-8 weeks. I spoke to one of the transplant doctors today and she said that this situation won't threaten the success of the transplant at all. It does, however, leave me at risk for two things: 1. infections due to low blood counts, and 2. the loss of my sanity!

I'm getting transfusions of blood and platelets about every other day, as well as a drug to stimulate the return of my white blood cells, but I still haven't had the usual spike that typically happens by now. That could change any day, and I pray that it does. But for now, it's status quo.

That's not to say that the last few weeks have been without drama. I contracted a pretty wicked rash as a side effect from the chemo that looked like measles on steroids. Then I had a bad allergic reaction to a platelet transfusion. I always wondered what the Rapid Response Team did. Now I know. Lots of people doing lots of things all at once. Now when I need a transfusion, I get special platelets with lots of pre-medication.

And more drama: I may have mentioned that, in mid August, two of my cousins and I went to Arizona to move my dad into an assisted living facility because of progressing dementia. This was a huge feat, since the search for a facility, wading through Medicaid applications and assessments, and the move itself had to be coordinated from New Jersey. The day after I returned from the move, I had a routine biopsy, which is how I learned that I had relapsed. A little over a week ago (less than two months since the move), the assisted living manager called to tell me that Dad is sleeping all day, not engaging in daily activities, and may have pre-pneumonia. A trip to the hospital and lots more assessments indicated that, for his health and safety, he needed to be moved into the long term nursing center on the campus. Thankfully, with the help of numerous understanding staff members at these facilities, we were able to move Dad seamlessly, and he is doing much better. He's in good spirits and responding well. And because he's such a sweet, gentle soul, everyone loves him. I'll have his things packed and moved into storage next week, and by the time I have the transplant, I'll have peace of mind that he's completely taken care of, which will help my stress level enormously. It's funny how the timing of these events happened. Had we not moved him when we did, I can't imagine how things would have turned out.

Reading over this post, it sounds a bit depressing. So let's focus on the good news:
* Although a donor hasn't yet been found for me, my doctors are very optimistic that one will be found soon. This process typically takes 3 or 4 months, but they're hoping to speed it up, since I'm stuck in limbo land.
* I'm not sick with anything right now. If I can stay that way, I'll get through the transplant as well as anyone else.
* I'm getting really great care, here in Hackensack.
* The miners in Chile have been rescued! This story had been driving me crazy. Must have been something about being trapped and having no control.

Hopefully, I'll write my next post from home and a donor will have been found. I'd love to spend some time with Sadie before Mary moves her to Pittsburgh to live with her family for the next few months, but that would have to happen within the next week.

So far, things have gone well for me. At this point, I'm not willing to settle for anything less, as the beat goes on.



Saturday, October 2, 2010

Sometimes a gloomy day is not so gloomy

We had some pretty impressive storms in the Garden State this week. On Wednesday and Thursday the sky went from gray to gloomy, to dark and then exploded in sheets of rain and wind. I watched from my hospital window in wonder as I tried not to think about the importance of these days in my treatment plan.

Wednesday was Day 14 in Treatment World. (Day 1 begins with the first day of chemotherapy.) On my regimen, this is the day I was scheduled for a mid cycle bone marrow biopsy. This test determines if the chemo is working, or if I need more treatment. Getting the leukemia under control is necessary to proceed with the transplant, so I was anxious to learn how I was doing. The best result would be for my bone marrow to be completely empty -- no leukemia blasts.

I had the biopsy Wednesday afternoon, and on Thursday afternoon, Dr. Goldberg reported that I'm doing great: no blasts detected in my completely empty bone marrow! Now we have to wait to see what my bone marrow recovers. When my counts come back, I'll have another biopsy in 3-4 weeks to determine if I am in complete remission. This is the best state for a transplant to be most effective.

It's kind of freaky that I'm functioning as well as I am with no bone marrow. I feel pretty good, although I still get transfusions for red blood and platelets when they drop below certain levels. My side effects with this treatment, except for a wicked rash, were minimal and I made it through with little drama once the chemo was over. I still have my hair, although that will change when I get chemo prior to the transplant.

I'll be here for about a week or so, till my counts come up, then I'll be able to go home for about a month to recover. All this time, the search for an unrelated donor continues. My sister was not a match, but I'm optimistic that a donor will be found. It's a very complicated process that takes time. Transplanting a person's blood factory, either with stem cells or bone marrow, is pretty intense. The more I think about it, the more science-fiction-made-real it becomes.

The entire process is a bit overwhelming, so I'm trying to take things one step at a time. For now, I've overcome the first hurdle. I'm looking forward to getting home, veering off the In-Room Dining menu, playing with Sadie and enjoying the Fall colors. I've come to appreciate even the gloomy days.