So a mixture of both good and bad news. The positive outweighs the negative in the long run though. Here is the scoop: my doctors believe that the cancer has transformed, and spread to my spinal fluid/central nervous system. I had my biopsy today, and don’t have the MRI of my brain until the 10th, but this is what they believe from all of the testing thus far. Ok so potential of spreading to my brain SUCKS, and is totally scary. Would def explain my chronic back pain at least. Now here is some good news:
There are treatment options! It looks like they want me to undergo an allo stem cell transplant, which means I would receive blood from an unrelated live donor. First however, I would have to have chemo to make sure I’m cleared of cancer before we can start the transplant. Second, I’m totally dependent on the donor’s schedule.
**note regarding donors. The search has already begun for a matching donor for me from the national registry. Luckily, being Caucasian and being young gives me a 70% chance of finding a match. Being a stem cell donor is no easy process. Once an initial potential match is found, that person has to fly to Houston from wherever they may be (out of the sheer kindness of their heart), and then commit themselves to a two week screening process to ensure the match is exact. Once that is established, they undergo surgery to have a port-a-cath implanted in their chest, then begin the process of extracting their stem cells. Recovery for donors can take weeks. A lot of amazing people have graciously asked whether or not they could be tested to see if they are a match for me, which I appreciate and love so so much. There are thousands of people on the registry, and the search has already begun, so I think it’s too late. If they are unable to find a matching donor, then you better believe I will be soliciting like hell to find one! My stem cell doc said that my donor should be a male under age 30 (this is because females carry antibodies due to menstruation/pregnancy, which could counteract with my blood).
Okay so after the donor is matched, and after I have the chemo to “clear me out”, here is the bad part….I have to stay in Houston for the transplant. 30 days inpatient, then 100 days living within a 25-30 mile radius of the hospital. That’s about 4 months. Which means we have to rent an apartment temporarily. I also have to have a caregiver with me at all times. Mack is not allowed in the hospital at all; no kids under the age of 12. This time people who visit me will have to scrub in and wear scrubs, masks, gloves etc., then throw them away every time they leave. I am going to be too sick to work, at least while I’m inpatient. I’m praying that I will somehow be able to work remotely from my apartment in Houston after I’m discharged, so that I can keep getting a paycheck and maintain my benefits. oh and you know…keep my job! I think my dad is going to stay down with me during my inpatient stay, then once I’m released, he will have to watch Mack during the day while Derek goes to work, and I’ll have to take turns flying people down for a week/weeks at a time, who are willing to take care of me. (I have to have a caregiver drive me to appointments which are frequent, and make sure nothing happens where I would have to go to the ER). This is seriously going to cost an arm and a leg.
Additional catches: We need a 2 bedroom apartment, and we can’t stay in shared housing (with shared air) due to risk of infection. Also at many of the cancer patient housing, they don’t allow children under 12, also due to risk of infection. You see this procedure (which is why my transplant doc at Seidman said she didn’t want to do it) is very high risk. There is a very high risk of something called graft-host disease/infection, where basically the donor’s new blood starts to mistake good cells for bad ones, and kills those off too. The biggest risk is organ failure. The stem cell team whom we met with yesterday were really really nice. A much different experience overall than our last. Anyway, they said that they aren’t going for prolonging life treatment with this procedure, they are going for CURE. And if that can be done, well then shit. It’s definiately worth missing another Christmas, or birthdays, or school parties, especially if it means that I am able to have like 200 more of those in the future.
But this is going to be a very long and difficult road. Not only physically, but also emotionally, logistically and financially. We are blessed to have such a great support system, and people who are willing to donate their time to spend with me here. They told me to remember what my auto transplant was like (as close to hell as I can imagine it), and then double it. that is what I’m about to undergo (pending the finalized results next week). If the cancer has spread to my spinal fluid, or there is anything in my brain, then I’m definiately anxious to start chemo ASAP. I will be asking my Houston doc if I can receive all chemo treatments back home at Seidman, and notified my Cleveland doc that I would like the same. I have no idea what type of chemo it will be-whether I will be inpatient or outpatient-but at least over the holidays, it’s nice to be near people you know and love (like my usual nurses on S3). Plus I’m sure I can at least get a day pass to go home on Xmas if I’m inpatient. Certainly can’t do that if I have to stay in Houston.
The doctors told me that I need to gain some weight. I’ve lost about 6 lbs in a week. (Largely due to giving up dairy and alcohol for the past month, and also due to depression). Which I just want to point out is certainly the ONLY time a medical professional has ever told me to gain weight. Shit. that part was amazeballs. ..Well at least it would be amazeballs if I had an appetite. Or if the weight loss part wasn’t scaring me. I had my spinal biopsy today. They strapped me face down to an MRI machine, and had me move in and out of the machine while they located the best place to extract a piece of bone and tissue. They didn’t put me all the way to sleep. Instead they kept me in a state of “twilight”, hoping I would just fall asleep on my own. But I guess they didn’t really believe me when I told them that I have a really high tolerance for those drugs because I’ve had them so many times for biopsies and small procedures, because I never fully fell asleep, dozed off only once, and woke up as the doctor was literally using a hammer to pound what looked like a giant crochet needle into my left lower lumbar spine. So I freaked out, and they immediately gave me more medicine, but by that time they were done, and the medicine didn’t hit me until we were back in our hotel room. 3 hours later I woke up in a total panic, because I had NO IDEA where I was lol. Oy.
Anyway, it has been a super overwhelming few days. So much to take in. So much to prepare for, and yet I have no concrete details yet to be able to make any official plans. I live in a constant state of anxiety and I hate it, but hey, at least I’m living.
Pain pills are starting to kick in, so bed time for me. I wish this post was funnier but I’m pretty drugged up today, which apparently has hindered the humorous portion of my brain. 😦
Coming home tomorrow for a few days. Can’t wait to see my boys. Love to all of you, and thanks so much for the well wishes.
PS extra prayers for those of you who are on the national bone marrow registry list. After learning how much goes into the process to save a stranger’s life…well…I am so incredibly grateful to you.