Whoa! Dramatic title… but true.
Keeping everyone updated on my current health is becoming less and less of a priority. I don’t have the focus, energy, and where-with-all to summarize my decline. Not just an entertaining blog post like this one, but oftentimes sending a text or making a phone call to inform a family member of my latest office visit is just too taxing. I’m living all of this, and it can be hard to relive and regurgitate constantly. So I just want to give everyone out there a heads-up (Yes, even you.) that in the near future I may stop giving updates. This means y’all might have to just talk to each other (ewww.. gross) to find out what’s going on. My amazing, lovely, incredible, god-send of a partner, Josephine, has volunteered to try and keep people updated. She may or may not post on this blog, but she will at least try to respond to close friends and family about my well-being. I ALWAYS appreciate the thoughtful messages people send me. I just may not respond.
Things are getting pretty rough over here.
I had an appointment this week to go over all of my latest scans and blood-work. Basically, it’s the same bad news over and over.
The latest dose of the latest drug is ineffective. My latest scans look bad, and we have fewer options than we thought. I started a new drug (Vandetinib / Caprelsa) this week. This may be my last realistic attempt at a working treatment. I haven’t been responding to these classes of drugs and so if Vandetinib doesn’t work then it’s time face the music (bad Kenny G kind of music). We’ll know more in 4-6 weeks.
There are a few last-ditch things we may try, but most likely I’ll be on my own after this and seeking purely palliative care. Surgery, traditional chemo, and radiation would most likely cause more harm than good.
Am I the only one who thought Kenny Rogers and Kenny Loggins were the same person?
“Advice for Future Corpses” by Sallie Tisdale
I HIGHLY recommend this book for anyone interested in learning more about the end of life. Especially for those who want a better understanding of what I’m going through and how to help me during this time. It’s extremely well written, thoughtful, and engaging. I don’t care what your situation is. I think EVERYONE could benefit from reading it.
What is happening and will happen
My cancerous lymph nodes are taking over my neck constricting blood flow to my head. I have to sleep sitting up. Which has resulted in me not sleeping well at all. Sometimes I’m in pain and very uncomfortable but most of the time my drug cocktails are keeping things bearable.
Soon the lymph nodes will start breaking through the skin of my neck and oozing (ewwww-zing). It will become harder to breathe and my risk of stroke will go up and up. Eventually, we’ll transition to hospice.
I feel confident I’ll make it to Christmas. I might not make it to my 40th birthday (May 26th), but my goal is to make it to May 28th – my daughter’s 12th birthday.
I’m not trying to sound overly negative or doom and gloomy. This is just where things are heading. It helps me to know as much as I can. I want to know what’s coming.
Spoiler alert! I die at the end.
I still wake up grateful every day. I know it sounds cheesy. Or maybe it sounds like what I’m “supposed to say”. But it is the truth. There are always things that we wish were different. I wish I didn’t get cancer. I wish my kids didn’t have to lose their dad at such a young age. But these are the cards I’ve been dealt. This is my story.
Every struggle I have faced was worth every moment of joy I have experienced. I would do it all again, just like this.