One Step Forward

There’s always that pessimistic saying one step forward, two steps back. Sadly there are times it’s true that we seem to be losing ground. I am constantly reminded that my health will never be good again, but we keep trying to take another step forward. Before anything else, here’s the latest on the cancer front.

In my last update I mentioned they switched the attempted liver support drug from a bile duct opener to a steroid called Prednisone. And in very short order it worked. After just over 3 days of dosage I went from a 2.7 bilirubin count to 1.1. The next step was to keep in that normal, grade 1 range (under 1.8) for two weeks. The trial protocol allows for me to move back up one dosage increment (from 100mg to 200mg, 2/4 of a full dose) if I can show the normal bilirubin range.

It’s been painful throughout because the tumors have blossomed and push every which way. I have a burrito belly and half a spare tire. My belly button is almost flat and two protrusions from my scar have popped into turkey timers extending away from the body where the ligaments underneath have torn. My breathing is significantly restricted and my heart rate is elevated due to tumor mass pressing directly against them. In short, I’ve been in pretty bad shape.

But the good news is, the Prednisone did the job. The next week was 1.3, the following week 1.2. I was approved and started the 200mg level on Wednesday last week. What that will do we don’t know, but it’s a step. It could do some good and help beat back the tumors a bit and provide relief. That would be welcome. Or given this much time on the low dosage it’s possible my tumors have mutated in new forms that are not treated by this medication. It could be somewhere in-between. Only time will tell.

Looking at the photo I just took with window light, you should probably see what I see. That yellow in the eyes isn’t great. That’s a sign that my toxins are building up. I really need this Prednisone to keep working, but the yellow worries me. I try not to worry, because there’s nothing really I can do other than follow the plan, but my mind just can’t let it go. I worry.

This crazy nationwide stay at home action has busted up all our big plans. My poor daughter has missed all the important closure and passage involved in closing our her senior year. We had a wonderful trip planned with her over Spring Break. We tried to plan a substitute trip. Then we just couldn’t do any of it. Crap.

It’s really how things have been going for many people I’m sure, but for me it carries additional significance because this is likely my last opportunity to do some of these things with her. It could be my last summer. I really don’t want to spend the bulk of it inside despite having some together time as a result. We’re still hoping to have a makeup trip in the summer, and a family reunion later if I’m healthy enough to attend. We hope so, but so much is out of our hands. We just have to hope, wait and see.

I still have been able to get out on my bike here and there around the weather and depending on how I’m feeling. Sometimes it requires some extra pain pill dosing, but it’s worth it. Usually with a little caffeine boost by way of drink mix it calms my insides enough that I can get out. I’m much slower and can’t go nearly as far, but I haven’t found anything better to push back on the tumors than gulping for air and I do the best I can. Just like everyday life I suppose.

Today I decided to take a ride, which I don’t typically do on Sunday but I needed to move my body. We had just finished a long family walk with Heather and Robyn, but the trail was calling me. I headed out on my normal course when a couple miles from home a Spring storm showed it’s ugly head over the northern side of the valley. I was determined to get in some kind of ride so I took off south. I shaved off some distance hoping to make it home before the rain, but I failed. The last 3 miles were a wet, blustery, slow moving mess. Total turmoil with a strong headwind, pelting rain, and even some hail. Other cyclists going the other direction looked at me and we all shook our heads and laughed. Sure seemed like a bit of a microcosm of life lately.

I crept slowly home because those skinny tires have no tread and jumped in the bathtub to warm up. After I felt warm again and got dressed, I looked outside and it was sunny and 60 degrees. I just shook my head. If I had taken even a minute to look at the weather report I could have avoided all that by heading out just an hour later. Oh well, I guess timing is everything and I just didn’t have it today. It seems more and more like that in my life, just not quite in time with how I want things to go.

Missing memories I want to make with those I love in the time I have, but having to accept it’s different for now.

So for now I’ll keep taking the meds and various supporting meds for the hope of it doing what my body needs. Push back on the tumors giving relief, quality of life, and more time with both those effects. Let’s hope for another step forward of staying on treatment and it having enough positive impact that they keep treating me. Seems a reasonable hope to take another step forward and skip those two steps back.