Coping with Set Backs

We have all been through the experience of waiting for a phone call or news on a medical report. The wait always seems to be the hardest part... Until you get news you were not expecting.

My set back

A year ago, I was seeing a neurologist about some neuropathy issues I was having in my legs. My overall strength was deteriorating and I was under impression once you cured hep C, you would be getting all of this back; I am learning that is not the case. My symptoms did improve somewhat but they started deteriorating again rapidly in 2016.  At this doctor’s appointment, they were discussing possible MS issues, and that they were wanting to conduct further testing to see if, indeed, I had MS. That day, I had numerous vials of blood drawn. One of them so critical that as soon as they collected in a vial it was wrapped in body temperature wrapping and immediately taken to the lab for testing.  I’ve had lots of blood draws in past with the trial, but this was so different. I was getting a bit nervous seeing the intensity of the tests.

Urgent news

It was not even 24 hours later, I got a voicemail from the university cancer center. The message was urgent and they instructed me to call back immediately. Confused and really worried, I called my liver doctor almost in tears wondering what in the world was going on. I was not being seen by any cancer doctors, only a neurologist. Was this a mistake? Had they called me by mistake?  After my liver doctor called me back knowing more, he instructed me to go get in the next day. My cryoglobulins were charting very high. At the time, I had no clue what those were. Nervously, I headed in to the cancer center the next morning, my two kids with me, as always, for moral support. My hands were sweaty and my blood pressure was elevated. It is not every day you get called to immediately repot to a cancer center.

Getting treatment

Long story short, I had to undergo a bone marrow biopsy to be tested for lymphoma. It was not as painful as I was anticipating. The news came back rather quickly, showing B cell lymphoma. What in the world is this? I quickly learned it was both combinations of lymphoma. The next month, I was scheduled for 4 rounds of chemo. Needless to say, going in for what I thought was MS and getting that extensive blood test lead me to actually curing something else. These rounds of chemo took care of my cryoglobulins as well.  I am doing better and have not yet gone back to neurologist for MS testing as of yet. I am happy to report my mobility is better and although I still have peripheral neuropathy, that is manageable.

I do my best now to not look at medical news anymore as negative or positive. I look at it as though it is what I need to do and if more tests are needed, so be it.  Maybe I am becoming numb to all the “set backs” or maybe I am learning there is nothing I can do anyway, so I just have to roll with the punches.