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

SURVIVORSHIP?

Evil pills

Recovery is a bitch. A mean, vengeful screaming harpy. After the last round of chemo, I was ecstatic. This misery was DONE. But after the haze of sickness eased, my brain woke up and thought OH MY GOD, THAT WAS TRAUMATIC.  During treatment, all I could handle was getting through it. Now that the emotional and physical stress of diagnosis, surgery, radiation and chemo was over, the mental baggage carried around from the whole process came out of storage and tumbled down. I had naively thought the physical healing was the only thing to worry about. The mental part was just as hard. And the two were intertwined.

This transition  from cancer treatment to “normal” life is called survivorship, though the term isn’t necessarily accurate or appropriate. Survivorship is general, meant to encompass all stages from diagnosis to life after treatment. Not everyone has a set end time or even a cure, though.  It also sounds like the patient is a victim rather than a warrior and fighting is required to survive the ordeal.

The leap back into routine has been emotionally discombobulating. Everything was different, with no point of reference. Now with the ordeal done, I was unsettled and lost.

I was bald for four months and my hair growth was still sluggish. Hurry up and grow already! The damage was still there, taunting me. It mattered more than I thought. The bristle that had survived the chemical onslaught, grew softer, darker and longer, sprouting in random directions. But it was too light and sparse to cover the baldness. My eyebrows disappeared, then stragglers came back. Most of my lower eyelashes fell out. I longed for normal hair. I had to block inner thoughts that told me that I was ugly. 

Physical fatigue hung around like an unwelcome guest that wouldn’t leave. It was cumulative and stronger from each infusion.  The last chemo recovery took longer than the others. The muscle weakness eased off, but the bad memory of it didn’t, worming into my brain. Running was easier, but it wasn’t as fast and strong as it used to be. Feeling good was elusive. Sometimes, I just wanted to nap all day. Tiredness came out of nowhere and hit hard.

My mind was weary as well. Worry about side effects, what was going to happen, insurance and bills was exhausting. Throw in a pandemic into the mix and it was much worse. Was I more likely to get Covid with a compromised immune system? Was it a good idea to be In the grocery store hunting for nonexistent toilet paper while tired and queasy? Emotional support programs were cancelled, so good luck and you are on your own. I had no one to complain about my life, which made the isolation worse.

Part of the recovery distress was realizing that people still stunk, literally. From chemo I had acquired a strong, gut punching aversion to sickly sweet odors of cologne, deodorant or soap. This affliction remained. I assumed everyone got this, but found out they didn’t and I felt like a freak.  Little research about it was online about and no information that it’s an after effect.  Maybe it was a psychological reaction. Entering a locker room that was just disinfected made me queasy for ten minutes. Outside, scents assaulted me with no visible source. A revolting smell could emanate even from a passing car. Leaving the house meant an olfactory war. Viscerally, my body recoiled from scents that everyone else thought was nonexistence or pleasant. The stench of a passing bike rider brought forth a flashback of being sick and weak during chemo. How did this happen?

Treatment wasn’t really done, either. The oncologist recommended another torture, a hormone blocker, since the original cancer cells responded to estrogen and progesterone. Decreasing estrogen by 70% to prevent cancer recurrence sounds good in theory, but not so much in living with it. These drugs can cause joint pain, bone loss and hot flashes, among many others. They have paragraphs of side effects. People complain online about crippling pain. The pills are supposed to be taken for five years, which is a long time to be miserable. It’s difficult to commit to that length of time if the pills are unbearable. Life is too short.

Doctors aren’t always helpful offering ways to ease the side effects. They think a patient should live with it or take more drugs with even more side effects to counter the ones of the original drug. It’s cruel. Taking the drug is a steep price to pay for a vague chance of preventing recurrence.

Each new treatment, I imagined the worse, thought “no way”, gritted my teeth and did it anyway. Why does it always have to feel so bad? Why can’t doctors do a better job making procedures more bearable? Why can’t drug companies make more tolerable drugs? The treatments are worst than the disease. I have reached my limit in putting up with them.

Anastrozole  made my hip ache and hot flashes were more intense and numerous. I would give anything not to be drenched in sweat ten times a day. The pill killed my appetite and deposited fat in my abdomen. Occasionally, it caused headaches and nausea. Worst of all is the melancholy that came out of nowhere. I was sad for no reason and lacked motivation to do anything. The stupid pandemic forced isolation added to the funk. Part of me felt like I had died. I missed my hormones and wanted them back.

Now on Letrozole, it’s not much better. The joint pain and depression is a little less, but occasionally the fatigue is intense. I feel dead inside and tired. It’s difficult to decide what to do about it. Another drug  might be just as bad. Be miserable for five years? Don’t take it and risk recurrence? Trade quality of life for less chance of cancer? Use natural supplements that may or may not work?

In an attempt to feel less isolated and to regain a sense of peace, I have tried a Zoom cancer support group, hypnotherapy, Nidra yoga, and an assortment of naturopathic supplements. Exercise is also good if I can avoid stinky people. All these remedies help somewhat, though the lack of physical social contact due to the pandemic makes it more difficult. I could seriously use a real hug. Cancer is an emotional wallop, even when the prognosis is good.

This difficult experience left scars, invisible and physical. They harden, constrict and distort flesh, burrow into the brain and change thoughts and emotions.

It beats the alternative, though.

Recovery is a f’ing bitch.