Reposting from sixfeetofleukemia.com…
I got onstage for the first time in a while… I couldn’t stop smiling to make my “indifferent face”. Thank you to Wende and Comedy Works for arranging for me to have some minutes up there.
The last four days I was suddenly panicking… when I realized that there is no possible way that I could be prepared for this procedure. My thought in the beginning is that I would cook tons of food to have available from my freezer for when I go to the hospital, that I’d pack everything that I’d need and wouldn’t forget anything. Then I realized that I not only had to plan for this second 30 day hospital stay, but that it’s likely that I’m definitely not prepared for leaving the hospital in 30 days. Everything is going to be different for a while.
I’ve been crying periodically throughout the last week from severe anxiety over the unknown and things that I can’t possibly control. It’s also the reason that I haven’t raised the financial goal on here. I have no idea what I’m going to need. There’s a chance that I won’t be able to go back to work for a while… there’s also a chance that I’ll be totally fine. So, I am leaving the financial goal at $10,000 because I have to hope for the best. The other option is too hard for me to think about right now. Today I’m fine.
Tuesday I got on stage and told some jokes. It felt powerful to stand onstage bald and not care that people saw me vulnerable. And to find a way to get people that have been worried to laugh with me. There’s been a lot of tears along with a lot of laughs in this new world we’re navigating. We’ve become experts in my situation and sharing this knowledge with all of you.
Some of the most common, possible and/or probable side effects of High Dose Chemo and Stem Cell Transplant:
- Hair loss
- Painful burning of the skin of hand or feet
- Red blood cell destruction
- Graft failure (Bone marrow doesn’t take)
- Loss of appetite
- Time away from work
- Lowered white blood cell count (may lead to infection)
- Inability to Work
- Lung or Heart failure
- Lowered red blood cell count (may lead to Weakness/loss of strength Fatigue, anemia, tiredness, shortness of breath)
- Graft versus host disease (Allogeneic)
I know that they have to tell you all of the side effects and it’s just as likely that I’ll experience none or all… but it is known that I’m going to need constant supervision after I leave the hospital for at least 2 months.
Being an independent woman, I find this horrifying… not being able to drive? I can’t cook for myself? Not being able to be alone? Ever?
“Why?” I asked. “Why can’t I just have a lifeline or something? SERIOUSLY? NEVER ALONE!?”
“You may not be lucid. You may not know that you’re acting strange… you won’t know that you need to call for help.”
While I was preparing for this, I felt like I should probably prepare for the worst possible, but found myself unable to fathom not being coherent enough to know that I’m sick. How does one prepare for losing their mind for a little while?
Then, I tried to harvest the last of my 36 year old eggs, and the procedure was too dangerous compared to the success rate. So, I gave up my hopes of having children with my own genes. This was the first hurdle of acceptance in the large amount that I’m likely giving up. Emily said the wisest thing I’ve heard muttered since I’ve been in this situation, “This isn’t the life we’re fighting for right now.” She’s right.
Before I signed the papers, I listened to all of the “evidence based medicine” tried to figure out what I could control, took all of the tests, tried to figure out foods or supplements that may help them, and really what I’ve learned is that this treatment is so new, that they don’t have enough evidence to figure out what supports bone marrow transplants… or what causes the side effects. They manage it reactionary and try to prevent as much as they can, but in the end, the bone marrow is going to do what it wants. And lately, it’s been making me sick. Justin contacted all of the best doctors in the country in the treatment of my specific situation of Leukemia and they all said the same thing, “She needs the transplant. The sooner the better.”
I asked, “What if I don’t get the transplant?”
They were very clear: If I don’t go through with the high dose chemo and the stem cell transplant, I’ll get very sick again. I will be back in the hospital and it will become harder and harder to cure.
So, here I am, confident in our decisions with the information that we have, hoping for the best. I don’t even know what I’m going to need tomorrow… so I certainly can’t predict what I’m going to need in a month. I’m coming to terms with my complete lack of control over my future and surrendering to fate and the care of my physicians and love of my friends and family.
The last few days of this is like that feeling before the roller coaster hits the top of the big hill… when I was 8 years old. I’m not tall enough yet for this ride. Hoping I grow.
Keep me in your thoughts and prayers. High Dose Chemo starts at 6am. Buckle up.