It’s been two years since active cancer treatment ended for me, and life is different. People always assume that once  treatment is over that everything is normal again. The medical nonsense doesn’t end with the twice yearly oncologist visits, blood tests, yearly mammograms, in addition to the assorted other related and unrelated health problems. 

A sense of invincibility vanishes with a cancer diagnosis. If one bad medical thing can happen, maybe another one could? Every subsequent scan brings on the small twinge of “what if results are abnormal?” that wasn’t there before. The underlying anxiety never completely goes away even with “no evidence of disease.” Every little stupid medical problem takes on more significance beyond what it really is.

Physical reminders of what happened are surgery scars, less energy, more depression and strangely, still slightly curly hair from the chemo.  Blue dot tattoos are still on my chest from the radiation. My toes are still a little numb from chemo neuropathy. 

Invisible fallout from treatment can also manifest in weird ways. Laundry product scents are still repulsive. This reaction hasn’t diminished much since 2020. My theory is that while walking nauseated around the neighborhood after chemo, the strong smell of fabric softener poisoned my brain permanently. I lost the deep inadequate feeling of sickness and abnormality from having this weird sensation when I finally realized that the vile scents are being vomited into the air by countless suburban dryers, and that the ever present mystery smell was not a figment of my imagination. Now, being subjected to these odors is just irritating. I am the normal one and the users of stinky softeners are the insane ones.

For God's Sake Stop Buying This Shit!

Innocuous things like the freeway exit to the chemo infusion building used to make me inwardly shudder a little every time I passed it, but now it’s more of a shrug. Even a mere four rounds, three weeks apart, was traumatic. The exit was to a place of physical weakness and sick feeling, fatigue, hair loss shame, anxiety and fear of the unknown. Disassociating the experience from the freeway was a relief since I use or pass it often. I don’t have to go there anymore in my mind and it’s just a stupid exit.

Chemo rooms still invoke fear and anxiety in me. At a bone drug infusion late last year in a chemo room, a surprising strong urge to leave almost overtook me. I convinced myself to stay, and tamped down the fears by talking to the nurses. The bone drug was to counter the bone density loss caused by the Exemestane, a aromatase inhibitor drug that I take that blocks estrogen and therefore cancer growth. 

Part of the anxiety was due to being the first time I had it. The list of its side effects is disturbing, since I always endlessly google them ahead of time. Dealing with the worry about one scary drug is tiresome, without having to deal with others. It made me sick, but not in the same way as chemo. The next two days felt like the flu, with body aches, then I had an eye inflammation and fatigue for a month. If I ever have this drug again, the infusion won’t be in a chemo room. The side effects are bad enough without adding to the unpleasantness. I felt bad for the people who were stuck there through their treatments, when I could walk away.

I am tired most of the time. The cumulative effects of active treatment and Exemestane have dragged my energy level down. It took over a year to recover to a partial level of prior fitness. Twelve supplements, an antidepressant, an NSAID, an acid blocker, pain treatments and thyroid medication ease the side effects. Exercise and therapy have helped. It’s still a medical merry-go-round. My thyroid medication had to be adjusted. It was very difficult to sleep for a while because of low TSH levels. I spent a lot of time at the opthamologist for the eye problems.  My neck developed a constant ache and stiffness that was only slightly relieved by PT, drugs and steroid injections.

How can such a small pill be so evil?

                                              

Doctors push aromatase inhibitors claiming that taking them results in a 50% deterrence of cancer recurrence, but it is not guaranteed. They are all difficult to tolerate. I tried the three types and Exemestane was the only one I could stand.  Anastrozole was very harsh, messed up my thyroid and caused intense chest pain. Letrozole made me extremely fatigued. Besides the normal side effects were the unexplained weird ones. Random stabbing pains, scalp pain, tooth aches, muscle cramps, high cholesterol and the loss of any ambition to do anything, whether necessary or fun. 

Lack of energy brought on a case of I just don’t feel like it-itis. Everything seems like too much effort. The house can go clean itself. The cat can mop up her own pee. Getting one thing that needs to done in a day is a win. Forgetting what it was that I was going to do because of brain fog doesn’t help. The urge to just go take a nap is strong.

I miss estrogen. I used to take HRT and felt a lot better with more energy and less depression. The hot flashes came back and never left. Adjusting to a second menopause involved endless doctor visits, medical tests, support groups, therapy and anxiety. Cancer may feed on estrogen, but the body likes it too. Without it, the bones weaken, the joints ache, the brain forgets words, the lady parts dry up, and moods go south. An added bonus is belly fat. It’s a pharmaceutical crapfest.  

Because of the depression cancer treatment caused, I had to get therapy and take an antidepressant. Questioning all the mean things that I say to myself was an eye opener. Telling myself that I was ugly because my hair fell out wasn’t helpful. Thinking that I was stupid to run into a cranky Uber driver while changing lanes didn’t make the situation any better. My neck pain made it hard to turn my head and I didn’t see him. Saying to myself that people didn’t like me was an assumption not based on reality. It took practice, but I now try to be kinder to myself. My messy house does not mean I am inadequate.

 The thought of taking aromatase inhibitors for three more years seems an eternal punishment. The only thing I could do is make it as bearable as possible. Avoiding cancer recurrence versus the misery of the drug is a tenuous balance that requires a lot of effort to maintain. Neither cancer nor the stupid medicine will rule my life. If I learned anything, a difficult experience can be gotten through with enough help, determination and faith in oneself. And a lot of sticky notes to remember what the hell was it that I forgot to do.

Bird images from Eff'ing Birds by Aaron Reynolds