Let go of that control shit

Today I am in the midst of getting my 5th round of chemo. One more round at the beginning of August. I have some serious unknowns in my near future that could have a major impact on my life. I should be super stressed or depressed but I find myself calm and happy. This cancer is really teaching me a lot. I will bring these profound lessons with me after I am cured. It is changing my life for the better. I am an old dog learning new tricks.

I have started to get nerve damage from my chemo. I am losing sensation in my hands and feet and my face/mouth a little bit too. Additional rounds of chemo will probably make this worse. It’s not clear with peripheral neuropathy if the damage is reversible. I may lose the ability to drive. I may become pretty clumsy. I may have difficulty using my hands. If it is reversible, it could take 18 months to 5 years to get back. After I am done with chemo, I will be getting a stem cell transplant. This is a pretty daunting and somewhat dangerous procedure. But it is a lifesaver. One of the big bitches about the rare cancer I have is that is always, always comes back. Each time it is harder to treat. Traditionally you do not get stem cell transplant until after cancer comes back. But each time it comes back it is more , and you have to be in remission to get the stem cell transplant. If I were to undergo the traditional treatment, my odds do not look good. I have read its just a 25% survival rate after five years. Because I have a specific factor linked to my blood, it brings that down into the teens. But here is where I luck out. My oncologist is an expert in my cancer and has published studies about new drugs, sits on the board that sets treatment standards…. So my fantastic team at Northwestern is not going to wait until my cancer comes back. Instead, we are going with the transplant at the end of August beginning of Sept. New clinical trials have shown this approach may bring my survival rate up to 80%. I’ll take that!

Stem cell transplant is much more involved and impressive than I realized. Its gene therapy, Star Trek medicine! I will be hospitalized and given super high doses of chemo to wipe out my existing white blood cells completely. This chemo will make regular chemo look like a walk in the park. As my terrific stem cell doc told me, the chemo I have been getting is like the special forces targeting my cancer, and now we will be burning down the forest. It is not going to be a question of side effects. I will get them all. I will get mouth sores and will not be able to eat and talking will be hard. They will put me on pain meds. I will have severe abdominal cramps, probably more nerve damage and will remain bald. The bald part is no problem. I like my bald head now. I will be very open to infections, and they will be addressed. I will be moving into a special room in the hospital where I will be for at least a month. When my immune system has been destroyed new stem cells will be introduced which will hopefully graft and build me a new immune system. It will be brand spanking new. I will need to get my baby shots all over again. I may have new allergies.. The big question is if I will qualify to use my own stem cells or if I will need a donor. If I continue to do well with chemo, I will get to use my own. This is huge because they should reacclimate to my body quickly. Once I rebuild my white blood cells, I will get to go home. I will be restricted in many activities and monitored carefully for the first year. If I have to use a donor, it will be a different picture entirely. The cells may not graft as easily. I will get graft vs. host disease, and they will probably damage some healthy tissue too. Commonly things like eyes, liver… can be damaged. They may not graft well. Immunosuppressing drugs will control the damage. I would probably come out of this scenario with some level of permanent disability.

Again here is where I am fortunate. At first, the possibility of losing my vision, ability to walk, talk, use of my hands freaked me out. If it happens, I am sure I will be upset for awhile. But, I started a pediatric therapy clinic in NW Indiana. I have incredibly skilled physical, occupational, speech, nutrition therapists that I work with and are resources for me. Our business is based on helping kids without abilities adapt. If I can’t talk, there is an app for that. I know because I am the one that started finding them five years ago and pushing our speech therapists to familiarize themselves with them and start using them. You used to have to carry around bulky and expensive machines. Now it’s just an app! Brave new world! So I know if something does get messed up I will be able to adjust and have the resources to help me. Life will no doubt be different, but I can adapt, I will be happy anyways. I will find new ways to do things. So I am calm and confident. What a fantastic idea to gain and I hope to carry this poise with me after I am cured. To let go of the micro managing and control and be confident and relaxed. Thank you cancer.