If there is one thing P and I have learned over the last 19 months, it is that nothing is EVER set in stone in the world of oncology. Things change rapidly and one must be prepared for a change of plan (or to set on the brakes) without attachment to the "original plan" or "what they said". Oh boy, have we learned this one. So, that being said, we were not entirely shocked when we were informed by Dr. deLima that there is has been a 'hold up' with the insurance company. Yeah, again.
We went to Houston this past week with the expectation that we would be setting a hard and fast date for my admission to the hospital and for the transplant itself. Not so much. It turns out that, due to the July 4th holiday, my case manager with the insurance company was on vacation and thus did not yet approve my donor. This means that the donor has not been given dates to choose from for the bone marrow harvest which means that I have no date for transplant yet. While this is a HUGE pain in the ass for someone as type A as myself (what do you mean you can't answer every single one of my questions RIGHNOW? what do you mean this isn't completely organized RIGHTNOW?), it does not change the overall timeline for the transplant process. We are still looking at moving down to the Lone Star State at the end of this month and going to transplant at the beginning of August.
So, on to the really juicy stuff: the transplant itself. The bulk of the conversation had with Dr. de Lima revolved around what sort of transplant I will have. "What sort of transplant" you say? "Um, isn't there only one- a bone marrow one?" you say? Well, yes and no. Yes, I am receiving a bone marrow transplant (none of my other transplantable organs have crapped out...yet) but the 'what sort' part comes in when we start looking at the preparative regiment, or chemotherapy, part of the picture.
There are, essentially, two types of preparative regiments used in the BMT world: a traditional, full intensity transplant (which uses high doses of chemotherapy and sometimes radiation to completely wipe out all of the patient's own bone marrow cells before introducing the donor cells), and a reduced intensity transplant (which uses lower doses of chemotherapy than the traditional regiment and no radiation to kill most of the patient's own bone marrow cells before introducing the donor cells). The idea behind the reduced intensity transplant is that, by using less chemotherapy, the transplant process is not only less toxic to the patient, but the donor cells are given a chance to work on the patient's cells in a process known as "graph-versus-leukemia effect" and finish the job that the chemo started. Basically, the donor cells attack the left over host cells (cancer cells included) and set up shop. This type of transplant is heavily used at MDA because of the reduced risk to the patient.
When comparing these two types of transplant, there are definite risks and benefits to both which, in the end, roughly weigh out evenly, in my opinion at least. My doctor here, along with another doctor whom P and I met at PENN two weeks ago, are big proponents of the full intensity transplant for me. Dr. de Lima, and as I said, most of MDA, err on the side of the reduced intensity transplant. Where does this leave me? Well, with a choice.
In most parts of my life, and I'm sure you'll agree in yours as well, I prefer to have the control of choice. Nail polish colors, cream cheese flavors (plain? salmon? maple walnut?), shampoo (volumizing, shine-enhancing, color protection, whatever the hell else I was advertising-zombied into buying), yoga pose variation (why yes, I WOULD like to try that arm balance on one hand, thank you very much), you get the idea. However, may I just say that in the case , I would NOT like to make this choice.
On the one hand, I am strong and healthy. I work hard to stay strong and healthy: yoga, eating well, not smoking crack, all ways to stay strong and healthy. The full intensity transplant would be harsh, bring me to my knees and nearly kill me. This I know. What I also know is that the full intensity transplant, I run the risk of life-long complications that would keep me not-so-healthy or dead. I would like to stay in, or at least be able to return to, my general state of health and activity. This is very important to me. The reduced intensity transplant would possibly allow me to return to my general state of health and activity quickly and more fully. My organs may not be as damaged, if at all and the mortality rate is slightly lower.
On the other hand, I have cancer. I do not want to have cancer. I do not like having cancer. It sucks. This we all know. The full intensity transplant leaves nearly no chance that the CML could return. The drugs haven't worked for me, thus why we are going down this road. There is a higher chance that the CML could return with the reduced intensity transplant. Dr. de Lima said, and I quote, "If we do the full intensity transplant, and it doesn't work, you'll be pretty roughed up. If we do the reduced intensity transplant, and it doesn't work, you'll leave here basically the same as you came but a little worse for wear". Yes, this should comfort me. However, it does not. I would rather have gone balls to the wall and have it not work than be a wuss and end up, well, still a fucking cancer patient. But, I do like my lungs, heart, kidneys and liver and want them to work for the next, oh, fifty years or so (my skin and GI tract are pretty cool too and I do not want those effed up either). I like the life P and I have. Hell, I like life.
This choice is not one that needs to be made right now, I have some time, a few weeks at most. If it sounds as though have a clear point of view, or am leaning towards one over the other, I do not and I am not. This information has kept me up worrying for the last several nights. We will be seeing Dr. Raj and speaking with a few more oncologists in the time that we have to gain as much information as possible. It must be said though that there is a reason we are at MDA and I trust my team there with my life. They are the best in the world and will do well for me.
There is one more piece to this story: clinical trials. There are, at the moment, two clinical trials for which I am eligible. One is a trial of a combination of three chemotherapy drugs, one of which is new, in a full intensity preparative regiment. This is not a trial that I would like to participate in. 'Nuff said. The second, and more interesting, one is a trial of a post transplant drug which woudl be used after a reduced intensity preparative regiment. It is a low dose chemotherapy, given in four rounds intravenously, after transplant in order to help rid my body of any residual Philadelphia Chromosome (Ph+) cells. This drug carries risks with it, as all do, but the trial is interesting, even if it was not designed for CML. It is possible that I may, in the event of reduced intensity transplant, sign on for this trial. It is always possible to pull out at the last minute or discontinue participation if problems arise or participation becomes unnecessary (if I test negative for Ph+ after transplant).
There are many choices to be made here and not much time to make them. P and I will hold off on serious consideration of any of the above until after we hear from MDA this week with more information and some possible dates. The last few days have been exaughsting, to say the least.
Thank you for your support over the last week (month, year). The text messages, e-mails, facebook posts have been invaluable. In a time where P and I feel (mostly I feel) very alone, you have made us feel surrounded by support. Thank you:)