This past week has been a roller coaster of emotions. For almost three years, my M spike (the measurement of “bad” protein in my blood) has been negative, zero, undetectable. Until last week when I got a call saying that my blood work showed those proteins were found this cycle. We immediately upped my medicine and a week later retested – and my M spike was gone again!
Of course this was cause for (some) celebration. On the one hand, I am super grateful that my body is so responsive to one of my medicines, which we had tinkered around with because of some bad side effects. We knew going in this would be a risk. That decreasing the dosage of the medicine could mean that the proteins could resurface. And they did. And it is amazing that that number went back down so quickly!
But this scare has been…scary. While I had hypothesized these results were perhaps due to an “epic lab fail” or, as a friend surmised, maybe a drunken intern with a microscope, the fact is they could signal a more forceful return of my myeloma.
We met with my oncologist this week and he was more cautious with his optimism than we were, those of us who cried, jumped for joy and screamed out loud when that zero came back (I don’t think that was just me, right?). Before we can really celebrate, I now have to get additional tests before we finalize our plan of action.
Up next, I will need to get a bone marrow biopsy (which can be painful AF). This is the test that confirmed my original diagosis 4 1/2 year ago. After that I will have a petscan, to determine if I have any lytic lesions, or soft spots, in my bones. To date, I have had virtually no bone involvement which I am grateful for given that, according to the Multiple Myeloma Research Foundation, approximately 85 percent of patients diagnosed with multiple myeloma experience some degree of bone loss and the pain associated with it.
Believe it or not, I am happy to be getting these tests. Insurance won’t often approve tests like these and I haven’t had either of these in four years. I feel hopeful these tests will confirm what my body feels – that I am healthy & strong.
And we need information before we can make a plan. If these tests show that there is minimal – or NO – myeloma in my bone marrow, we stay the course. If the petscan shows my bones still don’t look like Swiss cheese, we stay the course. If anything has truly ticked up, we are looking at a whole new treatment plan… a move I have wanted to avoid for as long as possible.
I truly believe that each of you played a role in creating this wave of positive energy and love that brought me here — and I hope you will keep them coming. As important as these last tests were, these are equally important (hell, aren’t they all??). I have no doubt that your prayers, your positive thoughts, well wishes and support carried me through this challenge….and will help me through each future challenge.
PS stayed tuned. Many of you have asked me what you can do to help me. And I’ve got some exciting news coming soon!