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.
Sometimes on the cancer journey, the side effects of treatment are not always the ones you expect.
Most of us cancer survivors know the reality of “typical” (for lack of a better word) side effects of cancer and chemo. I am going to lump cancer and chemo together because we often are not sure which the symptoms come from.
Typical side effects are vomiting, nausea, diarrhea, hair loss and the ever-present fatigue. I have written several articles on fatigue and cancer, neuropathy and cancer, and chemo fog. But there are often other conditions I never knew about which I will call atypical.
Several years ago, shortly after being diagnosed with cancer, I developed cellulitis on my hand. I was flying home from St. Louis to Ohio, and vaguely remember bumping my hand on the trunk lid getting my luggage out of the car. It began to itch on the flight and by the next day was very red and swollen. I went to an urgent care center, because of course it happened on a Sunday. The doctor asked me if I was on a blood thinner and when I said chemo, he asked if I hit it on something. He gave me a diagnosis, antibiotics and sent me on my way. My impression was the chemo I was on at the time caused it.
A few weeks ago, I got an apparent insect bite on the same hand. I did something instinctive, but stupid. I scratched it and it started to swell so pus came out. Of course it was a Sunday again, and I ended up at urgent care. This time, I had a gracious physician’s assistant who took much more time. She explained that it was not cellulitis, but just swollen. She said if it was cellulitis, the red area would have continued to expand and get much worse. A simple scratch like I had was a typical reaction from cancer and make it swell more. Presently I am not on chemo, so unknown to me, the cancer can cause the problem.
There have been other side effects even more distressing. I suffer from bruxism, which is grinding my teeth, and as a result I have always had dental problems. But the year before I was officially diagnosed with cancer, I had five root canals. After being diagnosed, I have had so many teeth pulled I have lost count. The last time was particularly painful because there were two of them next to each other. I tried to research a connection and found very little on this subject. I was trying casually to get answers from my oncologist and dentist who did not seem to know. I finally confronted my dentist, because now it has become hard to chew, embarrassing and cosmetically not fun. I cannot get implants because of the danger of infection. I did not beat around the bush. I asked “IS THE CANCER CAUSING THIS? “ His answer was yes, most likely because cancer softens the bone.
I have also written an article on ototoxic medications about the chemo that made my hearing much worse. I knew about medications causing hearing loss, because I have been hard of hearing all my life. However, at first I was brushed off by my audiologist until I showed her how much it had deteriorated. Now we are monitoring closely the little amount I have left.
I have a great friend who is battling several kinds of cancer. She said to me “Cancer makes everything worse.” I do not want to be an alarmist, but I am fast becoming a realist. Incidentally, I have chosen each one of my doctors, my oncologist, dentist and audiologist carefully and have tremendous respect for them. They are all terrific. But it is up to me — the patient- to hop on the Internet or to check with the websites like Mayo Clinic, Cleveland Clinic, American Cancer Society and reliable sources. The Myelodysplastic Foundation (MDS) and the Aplastic Anemia Myelodysplastic Foundation (AAMDS) have been invaluable for obtaining information on my specific type of cancer. I have even found personally people I can e-mail or call in both of these places and ask very specific questions about my type of cancer. Look up places with the type of cancer you have, and develop a connection with the professionals there. Talk to the doctors, the dentists, the audiologists and the specialists. And if necessary demand an answer. I understand that no doctor can give us all the side effects and each patient is different. We would not want to know them all anyway would we?
However, when symptoms begin to appear we never had before, we want to be careful and do our due diligence. We deserve the courtesy of the professionals listening and helping us out. Every one of the professionals is insanely busy and it is not their body. It is our body and we want to know. I would rather the specialist admit they do not know so we can do research on our own. We need to be constantly aware that a simple scratch can be different when we have cancer and learn to be proactive. Our lives may depend on it!