How does this work again?

I still don't get it.  I had heard of stem cell and bone marrow transplants, but I never stopped to think about how they actually work.  It doesn't help that the media never really tells the whole story.  They portray people as being sick one day and better the next.  To watch Kitty on Brothers and Sisters undergo a stem cell transplant from her half brother, you would have thought she was having her tonsils out (where were the consultants on this one?)  

It was only when my friend and colleague, Keith, had a stem cell transplant with his own stem cells (autologous), and when that failed, a second transplant with his brother's stem cells (allogeneic), that I gained an appreciation of the complexity of the process.  [Keith is doing great, by the way, two years post transplant.]  But I still didn't really get it.  Not only didn't I get how dangerous, precarious and slow the recovery process would be, but I also didn't get the science of it all.  I knew that the stem cells from my 33 year old male donor would cause my type A blood to convert to his type O.  It makes sense that if the bone marrow factory that makes all my blood is making type O, then the type A blood "still on the shelves," as Dr. Goldberg put it, will eventually be replaced.  It's still pretty weird, but it makes sense.

I recently learned that, in addition to my bone marrow being 100% converted to a male donor, the actual DNA is male.  Wait, what?  My bone marrow DNA is now male but the DNA for the rest of me is female?  Yes, indeed.  How does that work again? Seriously.  This goes beyond science fiction:  Too much science, not enough fiction.  I know it's real because I keep staring at the test results.  Yet I still can't wrap my head around it.  I could leave my blood on a crime scene, and when the cops show up to swab the inside of my cheek, I'm innocent!  I'm sure CSI has done at least one episode with this twist. 

It really is amazing how far the science of medicine has come.  I find myself cursing all the medications I have to take because of all the side effects that keep me from feeling well.  But they are literally keeping me alive, after this incredibly violent and bizarre transformation at the core of my physical being.

Imagine this screenplay:  Under medical guidance based on decades of research, a person's bone marrow is destroyed completely, leaving the patient on the brink of death.  In swoops a bag of magic stem cells from God knows where, and somehow the patient doesn't die.  The stem cells take hold, make new bone marrow, which produces new blood, and an internal war breaks out.  As the stem cells fight both cancer and the patient (host), immunosuppressants, antibiotics, anti-virals, and a bunch of other preventative medications work to anticipate the next battle.  In the meantime, the patient's DNA for part of the body may switch genders, but this storyline trails off because it doesn't make sense.  If the patient makes it through the first year, chances are the new stem cells will stop fighting the host but keep fighting the cancer and everyone will live together in harmony.  Fade to black.

Honestly, if you read a screenplay like this, how likely are you to invest in this script?  Not me.  It's too unrealistic.

With all these thoughts swirling around in my head, I started thinking again about my donor. I wrote him a second letter last week, hoping he will write me back. My letters are screened by the National Marrow Donor Program, as his identity is confidential unless he agrees to disclose it after a year.  Until then, we can correspond in general terms, without giving away personal information about ourselves.  Here is part of the letter I wrote to him.

When I think of you, I’m reminded of a story I’d like to share.  I was getting blood work done last October, before the transplant, as you probably were too.  There was a man in a chair across from me who was donating his stem cells.  I could tell from the questions he asked his nurse that he was donating to a stranger.  When I finished my tests, I walked up to him and said, “I’d like to thank you for what you are doing.”  He looked at me like I was totally crazy, and asked, “Why?”  I said, “Because you are saving someone’s life.”  He then said, “But this is easy,” gesturing to the IV in each arm.  Then I told him, “You may see it as easy, but it means everything to the person you are helping.  It literally means the world to them.  And someone like you somewhere will be doing that for me in about two weeks.”  I think it was at that moment he realized, as he looked at me standing in front of him, the importance of his donation.

It made me feel good to thank that man, because I couldn’t thank you.  You are that man for me, and I hope you know that you have saved my life.

I wish there was more publicity, knowledge, encouragement, incentives to donate stem cells and bone marrow in this country.  Several of my friends and family members registered to be donors after learning of my illness.  But most people don't know about the registry or its importance.  I know I didn't.  The vast majority of people of color who need transplants will not find a donor because matches are based on race and ethnicity, and there are not enough people of color in the registry.  This is nothing short of tragic.  The fight is hard enough, even when a perfect match is found, as in my case.  My donor is as much a mystery to me as the science of this journey.  To answer my original question, I don't know how this works.  I'm just glad it does.

Kathy
CANcer + HEALth = CAN HEAL

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.

Kathy

CANcer + HEALth = CAN HEAL

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.

Kathy

CANcer + HEALth = CAN HEAL

Another Lost Fall

I love the seasons on the East Coast. Just when Summer bakes us a little too long, a crisp wind teases us with the promise of brilliant colors everywhere. Fall is my favorite season. But it's a bittersweet season for me. Whenever I get bad health news, it's always in the Fall. Unfortunately, this year is no exception.

I went for a bone marrow biopsy the day after I returned from my trip to Arizona. I found out late last week that the test did not deliver good results. I am no longer in remission. Dr. Forte sent me for a consult with Dr. Stuart Goldberg, Chief of the Leukemia Division of the John Theurer Cancer Center at Hackensack University Medical Center -- the number two rated blood treatment and transplant center in the country. I met with him yesterday, and learned that I will need more chemotherapy to get back into remission before proceeding with a transplant.

Chemotherapy regimens for relapsed Acute Myeloid Leukemia (AML) are complicated. The transplant process is completely mind boggling. By the end of the consultation, my brain hurt. The plan is for me to meet with the transplant doctors next Tuesday, after which I will be admitted to the hospital to begin the chemo treatments. I'll be in the hospital for about a month, and then recover at home until a match is found for the transplant. The transplant process, once I'm in remission again, could take 4-6 months.

This has been a rough week, to say the least. I still can't believe this is happening, after everything I've battled so far. It's like a final surge that one hopes will end the war. I hate to think about going back into battle so soon. And I'm devastated that I'll be on medical leave from work for so long again. Physically, I feel fine, although I know my blood counts are dropping. It's only a matter of time before I would end up in the ER. The foreshadowing of my previous post, The Suitcase, is downright creepy.

Although this will be my biggest fight yet, I've overcome worse obstacles. Fighting cancer has become my thing, my talent. I can't sing, cook or play sports, but I sure can fight cancer! I'd like to fight it in a public service kind of way, not as a patient anymore.

I've said it before, and I'll say it again: Hug your kids, kiss your parents, goose your spouse and give your pets a big squeeze. If you've always wanted to go somewhere, go. If you've always wanted to do something, do it. Life is too short and it could change drastically in an instant.

If I'm lucky, I might get to see some Fall colors from my isolation room in Hackensack. But if I don't, there's always next year.

Kathy

CANcer + HEALth = CAN HEAL