Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
I am thrilled to be enjoying a respite from chemo but afraid to be happy. How can I process this scary new freedom?
As many of my readers know, I have a blood type of cancer and thought I would be on chemo without a break for the rest of my life. We all know that putting chemo into our bodies is like pouring poison into our systems and the body being very smart will try to reject it. Side effects occur with almost every type of invasion, whether it is infusion, oral, I.V., shots or any other attack. Radiation is also detrimental to our systems and surgery is an assault. We tolerate it because we will do anything to stay alive.
I have been on chemo constantly and feel fortunate not to have surgery and radiation to contend with. But it has been eight long years; six years of oral and two years of monthly shots in the stomach. I have had many side effects while more keep cropping up every day. I thought I would always have to suffer with these nasty ill effects.
My understanding oncologist has taken me off for a few weeks at a time when I travel and go on cruises. Allow me to be vulgar when I say that diarrhea on a ship is not pleasant!
Recently, she gave me a wonderful gift. I have bone marrow biopsies every six months. Since the number of cells compromised did not change over a year, she took me off the chemo for awhile. I tried to imagine what not having the side effects would be like. When I recently told my pharmacist that I've had chronic diarrhea for eight long years, he just shook his head. My white blood counts have been alarmingly low, which of course increases the risk of infections. As all of us cancer survivors have learned — sometimes the treatment is worse than the disease!
I sat there stunned. I was thrilled but afraid to be happy. Would the cancer get worse? What would happen to me? How can I process this scary new freedom?
My doctor has an uncanny ability to “read my mind.” She hastily explained this was only temporary. She will continue to see me every month and do monthly blood counts. She warned me that this all could go south very quickly but assured me that she will watch.
Honestly, this fantastic woman has become my friend. How can you see someone at least once a month for eight years and not become close? Of course, we never violate the patient/doctor relationship, but I confide things to her I never have to my friends. In turn, I ask about her family and her vacations. I would miss seeing her for sure!
I left her office reassured and knowing that I will be monitored. Like all cancer survivors, we learn to know our bodies very well and when something is “off” we know it. I would call her immediately if anything changed.
Meanwhile, I am enjoying this reprieve! I shared the good news with my family, friends, fellow survivors, church congregation and on Facebook. I was overwhelmed by the positive wishes and prayers I received from so many people. I am sure these positive affirmations had a lot to do with my cancer not worsening.
The side effects are slowly dissipating, but some of them are still there. The hearing loss is permanent, the chemo fog drives me crazy and the muscle aches are horrible. But I feel energized in the morning. I have a new spring in my step and a smile on my face. When people ask me how I feel, I tell them I have never felt better. I have been told I look wonderful and I lap it up!
However, this nagging thought keeps lurking in my brain: “It is only temporary…it is only temporary…it is only temporary…”
After a while I thought to myself, “Damn it—life is temporary!” How many people do you know whose life was snuffed out in an accident (too many) or who are slowly deteriorating from a sudden illness or disease? We are supposedly fine one day and sick or disabled the next.
Do we sit there and think every morning that being well is temporary? I hope not, because it takes the joy out of living that day. I do think we need to remind ourselves that we aren’t going to be here forever and be good to one another. Every one of us has a mission to complete.
However, we still go on living and I need to do that too. I shouldn’t wake up thinking, "Is today the day I go back on chemo?" I need to be thankful I am not on chemo for one more day. I allow myself to rejoice and enjoy my new life.
I hate the thought of going back to the poison someday and know how awful the side effects are. I will have to handle it like all of us do. I did it for eight years and will do it again.
Meanwhile, I don’t want to waste any time. Chemo—and life—is temporary. So let’s have fun in the meantime!