For the last three years, I have been living from month to month and experiencing varying degrees of angst prior to each appointment with my oncologist. In the first seven months, I experienced worry and fear and even panic in the weeks leading up to the next appointment. During the stem cell transplant period I had appointments for blood draws, infusions and various other procedures almost every day. For two and a half months I was living from day to day with many of those days filled with worry and fear.
After transplant and the resulting remission, I became more and more confident as I went to my monthly appointments. Yes, I did worry about my blood counts before each visit to my doctor, but it became somewhat routine as my light chain numbers stayed in the normal range. I was still living month to month, but without as much of the earlier angst. Being realistic about my diagnosis, I knew that at some point this almost comfortable routine would come to an end and it did. Relapse is a reality now but it has not blown me away.
Now that I am relapsing but not in treatment yet, I feel completely in limbo and “adjusting my sails” has filled me with questions. Will my next appointment on February 6 change everything? Will my lambda light chain rise again? Will my doctor decide it is time to do something or will we continue watchful waiting? If treatment is the decision, what will it be and how will I respond to it? Will it work?
So many questions. . .