Weekly Update #95

I didn’t mean to let 3 weeks pass by with no update but I did and now, yet again, things have changed quite a bit.

I’m currently in the hospital in Austin and will be for at least the next week. I was supposed to be going to Houston this week to get my second dose of my trial drug, but instead I need emergent surgery. The single vertebra (T5) of mine that has had cancer in it for a while has progressed and as a result is now compressing my spinal cord and causing some pretty scary symptoms like I can barely control my legs to walk and I have totally lost control of my bladder function. Spinal surgery sounds pretty scary and like something I would normally take longer to consider, but if I wait I am definitely getting worse and if I do it I have a shot at getting better. My pain is becoming less and less well-managed each day, I need oxygen because I don’t get enough on room air, and I need help with things like putting on my socks.

This also puts everything else up in the air. When can I get my next dose of my trial drug? This surgery only helps with the compression symptoms, but not with the growing cancer in my spine and this surgeon thinks that radiation will probably be the answer there, sometime between 2-6 weeks post surgery. I have no idea what recovery will be like, what my new QOL will be. I have been in an intense amount of pain lately so decreasing that would be incredible. All of this, we just have to do the surgery and see how recovery looks to get an idea. Oh, and while the pain is likely to improve right away, the bladder and gait issues will probably take longer and are tough to predict.

I am going to be coming home to many new medical devices. I had already bought myself a shower chair last week, as well as a recliner with a feature called lift assist, that helps me get out of the chair more easily. I think there will also be a hospital bed and maybe a new walker and maybe a bedside commode. Even my house is going to make me feel like a sick person.

My joy for this upcoming week is that I am in Austin and I am allowed a single visitor each day. They can come and go, it just cannot be multiple people in a single day. So my dad hangs out with me a lot and Wes can be here on the day of surgery. Thanks for following along, y’all.

Sweaty Thoughts

Coming home sweaty from an outside workout always makes me want to write. It has been a very long time since I’ve been able to have this sensation. Exercise is part of how I got diagnosed – I had a pain in my tailbone and I thought it was from working out too hard. Through trying to address it I ended up at a GI and had the colonoscopy that revealed my cancer.

I tried to hold onto exercise as long as I could. During my first phase of treatment (daily radiation and oral chemo) I kept up my running schedule. I lasted two weeks before the treatment irritated my nerves and led to sciatica that sidelined me for the rest of that phase.

After my first surgery, I waited until I got the go-ahead from my doctor and immediately got on the treadmill. And then I mentioned it to a nurse who informed me that technically I was released for exercise but here were the risks . . . I immediately stopped and waited to heal further.

Finally, 6 months later I was in remission, fully healed from my next surgery and back in my running shoes.  And then we found out my cancer was back and I had my most intense surgery yet and had to heal for another six months.

Back in remission, I joined a class at the YMCA for cancer survivors, to help get them back into exercise. The 12 week program was amazing and I was back to not just cardio but weight-lifting, too. Then the back pain hit and we found out my cancer was back again again. Surgery, healing, and this time no clean scan followed.

I went back to chemo, and I still tried to walk occasionally. I had started daily walks with a neighbor while healing from the latest surgery and we tried to keep them up sporadically after I went back to work. But then another chemo side effect hit, another loss of mobility. Another surgery, more major muscle groups to heal.

That brings us to 2018. This was the year that I developed chronic pain and saw my mobility slowly decline. By August I couldn’t walk a whole block; it was too painful. Radiation relieved that pain and restored my mobility.

So here I am now. Trying yet again, knowing that it may be temporary. It’s not always easy to motivate myself to get out everyday. The fatigue makes it seem so difficult, it is like depression in that it tries to keep you from the activities that diminish it. Today looking back at how I have gone back to exercise over and over makes me feel proud of myself. And it makes me want to appreciate it while I have it. And I’ll tell you a secret: every time I go out for a long walk, my body wishes it was running, and I’m striving to get that back.