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.




  1. Sounds like a plan! Hope your GVDH cells are very smart and adjust to your body very quickly.
    Thanks for keeping us all up to date and give that kitty a kiss for me!
    Julie (Fischer)

  2. Good Luck Kathy from former co-worker Michelle at your firm.


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