Thursday, September 29, 2016

A New Scan Looms

I'm nearing the end of my steroid taper and I'm so very happy to report that the negative side effects are wearing off. However, it's unfortunate that the more positive effects are wearing off, too. For example, while I'm finally sleeping a full night- I also have a hard time getting out of bed to feed the horses and have little energy to face the day. I'm also finding that I can't carry quite as full a water bucket around the farm as I could on the high dose! Finally, the feelings of well being and contentment are slowly melting into feeling of anxiety- that too much time has passed without treatment. 

Today I have another lab and if all goes well again I will drop down to just 5mg per day tomorrow (for one week) and the next week will be no steroids at all. The week of no steroids will also be the week I get my first scans since the 'incredibly awesome shrinking tumor' scans. The upcoming scan has me incredibly nervous. I have no idea what to expect and I have to wait a full two more weeks (again, more time without treatment) to learn what is going on inside my body. My intuition is telling me that *something* is still going on (that I'm not "NED" or "no evidence of disease") but the big question remains- did the cancer remain stable while I was on the steroids to save my liver? Did the treatment miraculously continue to shrink the tumor? Or did the steroids put the brakes on the immune system enough to let cancer gain the upper hand again. And, if so, what does that mean? The treatment plan depends, of course, on this result. 

I know that I can, at least in part, blame the steroid taper itself for my anxiety; high dose steroids generally cause a 'good' mood and when removed can rebound to a 'bad' mood for a time. Also, there has been a great deal of loss in my greater circle lately. It seems every time I log in to Facebook I see another post about someone losing someone very dear to them. We have also lost several brave mucosal melanoma warriors in our MM Facebook group in the last couple of weeks. When I was first diagnosed I talk about allowing myself to be surrounded by thoughts of death but in this case it is quite literally all around. 

For now, I am turning back to my tried and true methods of stress reduction, healing thoughts and spending time doing things I enjoy and wait for the wave of anxiety to land on the shore and dissipate. I may also be spending less time on Facebook, at least for now, but you can be certain I will update you with any changes or after my looming scans in a couple of weeks. 

Finally, I am so grateful that I will be turning my attention to life and moving forward next week as my one and only sister is getting married! I look forward to a week of family and fun and celebration. How great it is that life goes on and good things continue to happen to people - no matter what we worry about or what looms around us. We always have the better parts of life to set our gaze on. 


  1. J.B., thank you so much for sharing with us. I am praying that all goes well and you continue to get miraculous results. Enjoy your sister's wedding! :)

  2. I am happy that you get a week of family. I pray that you can enjoy it. I am a good friend of your Mom and Dad and I follow your journey. I hope that you have many years to enjoy that beautiful little boy. Best wishes for God's miracles.