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.
A cancer survivor often contemplates which is the lesser of two evils – cancer or treatment?
I know I have an unusual perspective on the question of which is worse, the treatment or cancer, due to my type of cancer. In 2010, I was diagnosed with Myelodysplastic Syndrome (MDS). I could not pronounce it, much less spell it!
Approximately 10,000 cases are diagnosed each year. My unique type, del (5q), is only 10% of the total number of MDS, which makes this even more unusual. I was also younger than most people when first diagnosed, plus being a woman makes this rare because this disease is traditionally more prevalent in men. I only report this because every one of us has an unusual journey not to be compared to anyone else. Fortunately, my journey has been ten years long, which is a long time in the cancer world. MDS is treatable but not curable, and I knew this from the beginning.
As I contemplate the last ten years and ask myself which is worse — cancer or the treatment (in my case chemo) I honestly find it to be a toss-up!
Obviously, chemo battles cancer so we usually take it no matter what, since we wish to live. For 6 of these 10 years, I have been on Revlimid and for two years I underwent painful Vidaza shots. Then, for two more additional years, I have not been on any chemo while waiting anxiously for new chemo to come out. I have weekly shots to keep my red and white blood cells up while waiting for another miracle medicine.
All of us know the nasty side effects of chemo too long to enumerate here. I have experienced quite a few including neuropathy, fatigue, GERD, chemo fog and stomach pain from the shots. Losing more of my hearing was the worst. But the most frustrating and malingering side effect was the constant, horrible, exhausting, diarrhea with both of my chemo’s until I could no longer tolerate it, and stopped entirely. It was exhilarating at first, and I mentioned to several people that I had thought it was “normal” after 8 years to have constant diarrhea. Not to have it was heaven.
For awhile I was thrilled and for a year things were stable. After my blood numbers started changing, the doctors became concerned, I was informed that new chemo was on the horizon in another year and I just needed to hang on. My year is up and it is allegedly coming out in the next couple of months.
But I was naive.
I am now discovering what happens when I am not on the chemo. I am experiencing severe muscle aches from the oxygen not getting to the red blood cells, and am unable to walk more than a short distance or climb stairs without getting fatigued. I no longer have the nasty side effects, but I slowly feel like I am fading away and my body is telling me the cancer is getting worse. The last bone marrow biopsy confirmed it is worse, but not yet in the danger zone.
Now I want a new chemo. I am no longer as ignorant as I was ten years ago and know that there will be expected and unexpected side effects. But this gives me a fighting chance.
Cancer or treatment — this is a tough choice that many of us face. I have a dear friend who has ovarian cancer and already had some vicious rounds of chemo. The doctor gave her a choice between waiting for the cells to multiply and become worse or have the horrible chemo now. She is a warrior and fighter, thus choosing the chemo to give her a better chance. I know other people with MDS and blood cancers, who have chosen not to have stem cell transplants because of the risks and the fact they do not always work. Others have had them and done well. Choices have to be made by survivors on whether to have surgeries, radiation and other treatments. These seem like impossible choices to make.
I can still be up and around and am able to write and travel and be with friends and family. For me, chemo is my only choice. I feel lousy either way!
No one can ever make the choice for us, nor should they. We need to discuss the options with our family and with our doctors. We should never be told we are right or wrong and no two people are the same. We often want a little or a lot more time. Time is precious — but it has to be quality so we can make the most of it. So one is not worse or better than the other. We do what is best for us and enjoy every single second.