Thursday, September 13, 2018

Reluctant Blogger

I've written several posts in my mind over the last few months but have not found the time, or the energy, to sit down at the computer. Feels like that is the story of my life right now! I just feel exhausted almost all of the time.

I've started forcing myself to exercise more and am doing acupuncture and that helps a bit but still feel like I get about a quarter of what I "normally" would be able to get done accomplished.

When we went on vacation this summer my doctor gave me a mini break from the drug that has been giving me the most trouble. I thought when I went off it I would feel magically better. Unfortunately new and different side effects emerged. At first we thought it was from the other study med but have an endocrinology consult realized that at the same time I went off the steroids and likely was experience adrenal insufficiency (or failure). Luckily because of how I was feeling I quickly went back on the steroids.

Basically because I have been on steroids for so long, at such high does my adrenal glands have atrophied. They shut down since the drugs are doing what they normally would. Apparently after 3 weeks on steroids this can happen and I am in the 6+ month range.... we are not sure what is going to happen when I finally go off of them. We are doing a super slow taper and the next two months at NIH I will have lots of tests to see where they are.

For now, I have to wear a medic alert bracelet and carry a syringe of cortisol with me. If I were to be in a car accident for example, my body likely would not naturally do what it needed to because of all the steroids.

The other new development is that I have had a very low heart rate. I use to have a low resting heart rate when I was running marathons. Let's just say I am far from that shape and as my cardiologist says my heart is "deconditioned" (polite way to say middle aged and out of shape). I've been doing a lot of testing to make sure it is nothing that will cause long term damage to my other organs from lack of oxygen, or other more permanent effects. I think it is part of what is making me so tired.

This summer I think I have moved from being optimistic to realistic. I will always be a glass half full kind of gal but I know there are only a couple of options left for me to try after this protocol. If I stop it since it is a Phase 2 clinical trial I will not have access to these meds again until they are approved by the FDA which could be many years down the road, and they are working against the cancer.

We are going to need to weigh the negatives of the meds I am on this Fall versus the fact they are working against the leukemia. I want to lay out the 5-10 year plan. Katt said to me recently that she feels like she finally realized what it means that I have cancer... we both cried but reassured her that is why I have sought out a doctor who is an expert and am investing so much time and energy and getting healthy.

I think this is an underlying stress for everyone in our family. Most days it is well below the surface and family dinners followed by games is all one of our favorite things to do but it pops up and whether it is conscious or not it is always there.

Maybe that is why I have been reluctant to write, I have not felt like having another reminder...