[Eric Hofacket]

Re: Life after a stem cell transplant

by Eric Hofacket on Tue May 05, 2015 12:23 pm

I want to second what Kim T is saying about exercise breeds energy. Coming out of my SCT, I had very little energy. I was about 60 lbs (27 kg) lighter than I was just 6 months earlier from not eating. I was hardly any kind of SCT superstar. I had no idea how much I would recover or how long it would take. Walking to the end of my block and back a few times a day was about all I could do and, after a walk, I would crash out and sleep.

If you wait till you are feeling good and have energy before taking on exercise and doing anything, that day may be a long time coming. I found you need to get up and do it, and, over time, I found my energy levels increased and I could do more. I also had people around me who pushed me and were not enablers, doing everything for me while I sat on the couch all day because I was tired and had cancer. I started doing my own laundry, doing the dishes, etc. I would go walk the dogs even if I felt too tired to do so. After a few months, I was back to cycling and biking better than I ever did before.

I can certainly understand that if someone has bone damage and back pain before SCT, no SCT is going to resolve that and that is a tough spot to be in. That is why I feel finding an ef­fec­tive treatment before significant bone damage sets in is so important. And I do understand there are some people for whom the SCT is not effective or who already were in poor health even before myeloma, and the SCT pushed them over the edge a bit further. That is why I believe those who have kept themselves in decent shape before they began this myeloma adventure will on average do better with dealing with the treatments for this illness – and many other medical conditions, for that matter.

And I can understand that having a family and kids can make this a lot harder too. I do not have those additional pressures.

As for mood changes, I believe it is well known that dexamethasone can cause those. I certainly experienced that with long-term use and I did not like it. I became more withdrawn and not wanting to engage with people. I also became short on patience with silly things and impractical rules and policies I would normally let go, which makes having a government job a real challenge sometimes.

A woman with myeloma and her family I talked with while getting my Aredia a few months ago were having a lot of problems with the mode changes with dexamethasone. She has become extremely short tempered and had started throwing things at people. She knew this about herself and recognized it was a problem she had to work on. Other Beacon contributors said they had to retire early because of the challenges of being on dexamethasone and interacting with people at work.

I never had those kind of problems to that degree. I believe if somebody already is a bit predisposed to having depression, no patience, or being short tempered, dexamethasone can amplify those feelings and behaviors, as well as just simply being under the stress of having myeloma.

I wish there was an easy answer to this, but I see it is just something that one has to work on. I do believe that somebody who is aware of these challenges, and makes a conscious effort to rec­og­nize and try to control and modify their behavior, can make some improvements. I remind myself that my having myeloma is not just about me but has an impact on my friends and family and this is not easy for them as well.