One half. 50%. .5. Heads or Tails.
Yesterday was a bit disheartening. I had my appointment with my new transplant doctor, as well as a transplant evaluation in the donor center. She said there is only a 50% chance that the transplant will work for me. I suppose this figure is based on the type/stage of my cancer, and all of my treatment thus far. My husband and I were certainly not expecting this at all. We both really thought, especially after removing my spleen, that I would have better odds. After learning how sick this is going to make me, and how much we have to go through, it left us wondering what is the point?? (We actually found out that there was no other option. Because my cancer came back so aggressively the second time, and because I needed a high dose chemotherapy, without the transplant, there is no way that my bone marrow would ever recover on its own). Not to mention my 3% chance of dying during the transplant process. (I mean I know that’s a small percentage, but I was thinking it would be more like 1% or something!! 3 sure seems high to me!) For the past year, we have not had the best luck, so I’m REALLY REALLY REALLY hoping to fall into the “good” 50% category!
Good news: If the transplant works, the goal is for CURE not just remission.
Bad news: If the transplant doesn’t work, I can’t have another auto transplant. I would either have to go to clinical trials of a secondary auto transplant, or I would have to try a donor transplant. With a donor transplant, you usually get cells from your sibling, because they are most genetically similar to your own, thus increasing chances it will work, and decreasing chances for body rejection/infection. In my case however, I can’t use my sister’s blood because a) she’s already had a stem cell transplant and b) she has cancer. Which means I would have to find a matching donor….which I’m sure can be done….but then my chances are below 50% for it working at all, and I am at an even higher risk of organ failure and infection because I’m using someone else’s blood.
I mean I guess there is still a good chance it will work and I could potentially be cured, but it’s hard not to think about the negative aspect of it, since we kind of have to prepare for what’s to come. I promised Kris I would always keep fighting, but I wish I could ask her for some advice now. If we do all of this, I’m really sick, I’m in and out of the hospital for years, and still things aren’t working for me–is it worth it to keep trying, when in the end I might just die anyway? or would it be better to spend as much time with Mack as I can, so that he can remember me NOT sick and in the hospital. I don’t know. I guess it’s best to try not to worry about any of that until I have to.
The timeline of a stem cell transplant is pretty crazy. Before the transplant can take place, they have to harvest approximately 50,000 good stem cells from my body, and freeze them until its time for the transplant. Tomorrow I will have my repeat PET scan to see if the tumor in my chest still glows/is bigger/is smaller whatever. I am still scheduled to go back inpatient on Thursday for my last round of RICE chemo, and I will find out the results of the scan on that day. If the results are good (its just scar tissue or something), then I’m done with chemo, and we will proceed as planned. If it shows progressive disease, I will start over with different chemo to try to get rid of it again, and once its gone, I will start the process of a transplant.
No matter the outcome, however, I’m still going to be harvesting my stem cells starting next week. (So even if I have to get more chemo for a month or so, they have to start the harvesting process, and just freeze the cells, because the more chemo I have, the less likely they will be able to get good stem cells from me). This process seems somewhat daunting, and we will have to figure out our child care situation, but it goes like this: On Thursday when I go inpatient, I will have an outpatient surgical procedure to add an outer catheter line in my chest. (It will basically look like two tubes hanging out of my chest). They can’t use my port for the transplant process because its not strong enough/the flow is too slow. I go home as scheduled on Sunday, and will have my outpatient treatment on Monday. On Monday I will also start my high dose neupogen injections 3 times daily. Apparently this is going to really really suck. I was told by a nurse that some patients describe it as feeling like their bones are breaking all the time. Some patients vomit. So you know, I have that to look forward to. I will do these injections daily, and then starting Thursday, my husband and I will have to drive downtown to Seidman to check my circulation levels. Basically we drive to the outpatient clinic where I get my chemo, and they perform a blood test to see how many good stem cells I have in my body on that day. It will take about 2 hours of waiting around to get the results from the test. If They show I have enough to harvest, I will immediately go to the apheresis center, and they will extract my stem cells. This takes about 5 hours, and I will be very weak afterwards. If the test shows I’m not ready to harvest, then we go home, and come back again the next day. We will continue this process until I’m able to harvest about 50,000 good stem cells. Ugh. Sucks because we won’t know on any given day how long we will have to be there, and don’t know what we’re going to do with Mack. But we will figure it out I’m sure. Once they get all of my cells (assuming that the PET scan is fine, and I don’t require any more chemo), my transplant will take place in about 2 or 3 weeks. I will have surgery to remove my port, as it is an infection risk to leave it in. I will be inpatient the whole time, and will have 5 days of intense chemo called BEEP, which is 8 times the strength of what I currently am undergoing. When the doctor told me this, my stomach immediately dropped. I honestly can not even begin to imagine what that is going to feel like. I don’t really want to. I foresee a lot of vomiting in the near future, so I guess I’m glad I gained 4 lbs in one day eating Super Bowl appetizers..:/
In other news, I found out at my appointment that my red cells are at 8.0. I’m anemic. When I dip into the 7’s I require a blood transfusion. This could explain why I’ve felt like such a schlep of a wife/mom this go-round, feeling tired and weak all the time. I know its understandable but it pisses me off when I can’t do things like a normal person. I will also admit the following: After my appointment yesterday, there was a girl about my age walking to her car. She had beautiful long brown hair (with a really cute bang cut I might add); cute boots/leggings, carrying a Tory Burch handbag. She was adorable. And it pissed me off completely. Why the fuck does she get to be normal??? Will I ever have the chance at a normal life again???? Probs not. Life will never be the same for me no matter what happens. It was the first time I’ve actually gotten mad about my situation.
Anyway, that is the low down. Wish I had some funny anecdotes to share, but not today. Today when I got out of bed I put my bitter pants on. But tomorrow is another day, and I’m sure I’ll feel much more optimistic about everything. It’s all just a lot to handle.
Dear KS–if you could please send me a dream message of the winning lotto numbers, that would be fucking awesome. Thanks buddy! 🙂