“Managing cancer is a full time job.”

Nick began a new consulting job at the same time that he started his cancer treatments.  I  am grateful to his employer for allowing him to take a leave of absence until he is able to work again. I applaud Shelly’s employer for doing that as well. But there are  many of us who don’t or can’t take time off from our jobs, for a variety of reasons.

I am open about my breast cancer experience. However,  some parts of it are stored in that closed area  that the mind creates for self-preservation, because they are too painful to remember, and I won’t go there. With that in mind, here is a comparison between Nick’s cancer now and my  cancer then.

First symptom: Nick found a lump in his neck. I had no lump; mine was found by mammogram. Don’t put off getting one. Seriously.

Survival: Nick was told at the very beginning that his chances for survival were excellent. I was told by the head of the department at Yale that my cancer, which was non-hormone dependent, did not have the positive cure rate  that hormone dependent cancers have. That wasn’t my idea of great starting news!

Support system upon hearing the “c”  word: Nick has Shelly. I was the first among my friends and family to have breast cancer.

Having a nine-year-old and a six-year old at home: did not apply for Nick, but was definitely huge for me.

Fear that our children would grow up without their mother: did not apply for Nick;  terrified me.

Chemo: Nick’s chemo is specifically designed  to make his radiation more effective. Its side effects are  an acne-like rash on his face, neck, chest and upper back, and reddened skin that appears sunburned.  My chemo caused nausea, hair loss, mouth sores,   the total disability to even look at, much less eat,  most foods, and severe exhaustion.  I felt as if a truckload of bricks had been dumped on me.   Also, the chemo I received  ages the ovaries. That meant  the end of fertility and the arrival of fast-tracked menopause. I wasn’t planning to have any more children, but I suddenly had to deal with hot flashes, night sweats, and additional  fatigue concurrently with cancer treatment side effects.

Radiation: Nick’s is specifically aimed at his mouth, especially his tongue. “Losing his sense of taste” doesn’t mean that everything  has no taste, but rather, that everything tastes horrible.  His mouth is so sore that putting anything into it causes pain, and his tongue swells so that swallowing is very difficult . “The worst sore throat of his life” is here and he still has half of the treatments to go.  My radiation was aimed at my breast. I suffered no side effects from it that I remember, except a blue bra cup. In order to be sure that the  radiation machine is perfectly aligned to each patient’s body, the technicians now tattoo a dot in exactly the right place, but  back then they drew a  blue grease pencil mark on the  spot  that smeared all over after each day’s treatment.  By the way, Nick declined the tattoo.

Extreme shortage of energy: both of us.

Nausea: None for Nick. I had anti-nausea medication, but I preferred not to take it. I found that instead of preventing nausea, it prevented vomiting. When I took the medication I was nauseous for days. No, thanks!

Hair loss: Dr. P. told us that Nick would lose the hair on the back of his neck as well as his facial hair. Many years ago, I told Nick that I wished I could see his face free of his trademark beard one more time. I never imagined that my seemingly harmless wish would be fulfilled in such  drastic way!  I had my hair cut very short and then lost much of it, but not all. I have never liked having short hair. Getting haircuts still reminds me of my extreme haircut, my hair loss, and the wigs that I did not enjoy wearing.

Food: Nick’s ability to enjoy food decreased steadily, followed by a rapid decline in his ability to even tolerate it. He is now basically surviving on Boost. Yesterday he tried a bite of a banana, but the pain of swallowing it was awful. Later in the day he had some vanilla pudding, and still later, some vanilla ice cream. I’m thrilled when he can get some calories down!  The only food I could eat was cheese. Mozzarella, to be exact. I am the only person I know who gained weight on chemo.

Work: Nick took a leave of absence. I continued to teach  part-time during my treatments, because  my wonderful employer, Carole, hired several additional part-time teachers so that I was able to work on the days that I felt well enough.

Family meals: I  did all the food shopping for my family, and I cooked dinner when I could. These days it’s very easy to walk into a supermarket and get elements of a healthy  family dinner that are already prepared, but back then, no such capability existed. My wonderful, generous, supportive nursery school colleagues  did what women do for their friends: they brought us home-cooked meals. Often,  especially  on  weekends  after my Friday chemo, my friends took either or both children for dinner, for sleepovers, and even for weekends.

Medications: Nick has clobetasol propionate cream for his skin rash, calendula ointment for his neck redness and incision scar, clindamycin phosphate gel for his face, Crest Pro-Health  toothpaste for his teeth and a  pro-sensitive electric toothbrush, Paro-ex alcohol free mouthwash for his mouth, Biotene mouthwash for dry mouth,  a mixture of lidocaine syrup, Benadryl liquid and Maalox that numbs his mouth before he tries to eat anything, flucanazole pills for the thrush in his mouth,  nystatin ointment for the thrush on his lips, and hydrocodon-acetaminophen (Vicodin—used by House) for pain. He has discovered that distilled water, available by the gallon at CVS, tastes less horrible than tap water.  As for me, the only medication I remember was  for nausea prevention. It didn’t, as I have already said.

Medical help: Nick is working with an internist, two ENT  doctors, one of whom is a surgeon, a medical oncologist, an oncology  radiologist, an oncology periodontist, an endodontist, a nutritionist,  and soon, an acupuncturist. I worked with a medical oncologist, an oncology radiologist, a women’s imaging radiologist ,  an oncology surgeon,   a gynecologist, and an internist. My internist at that time (not Dr. H!) missed something.  When I switched  internists to Dr. H., he discovered that I had osteopenia, the stage of bone density just before osteoporosis. Fortunately, Dr. H. prefers to treat his patients as naturally as possible, only prescribing drugs as a last resort. I began taking calcium regularly and I started walking through my neighborhood, occasionally at first. Then a friend called and asked if I’d like to walk with her.  We began walking as regularly as we could. I credit our commitment to walking with improving my bone density and my  health in general.

Gratitude that all this pain and suffering will, in the long run, extend our lives: both of us. I am still here twenty-five years later!

A typical week entails driving to the hospital Monday through Friday for radiation and on Thursdays for chemo as well. Nick has been able to drive himself to radiation, but  after chemo and when he is on pain medication, I’m doing the driving.  Often there are prescriptions to pick up. Nick must have his teeth cleaned by  his oncology periodontist frequently to avoid infections; that was scheduled this week.  His oncologist recommended acupuncture, and that will begin on Saturday. Yes, managing cancer is a full time job for both of us.

2 thoughts on ““Managing cancer is a full time job.”

  1. Good morning Nick. Pray you feel better soon. You will beat it but it is a real bitch what you’re going through as only you truly know and l can only imagine. Your treatment video is absolutely fantastic brilliant and courageous. Love you man. Joel

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