UNPREDICTABLITY

 

Where did this bird come from?

Sometimes the unknown is exciting. A step into the future without certainty can be a chance for growth, success and joy. But then 2020 happened. It’s more like chaos, depression and death. People have adapted, but we all have lost connections to friends, family and normal activities.

I long for predictable. Too much uncertainty is terrifying. The pandemic has made planning futile. If I was depressed, I could sign up for a race, see a friend, go to a local museum, volunteer or book a trip. Now all these activities are pretty much impossible. Faces on Zoom don’t entirely make up for it. People are still dying, getting infected and can’t get tested. The end in not in sight. All my methods for coping are useless except for lone activities, phone calls and online meetings. Even as an introvert, I desperately miss traveling and seeing people live. Thrown cancer into this mix and it’s even more complicated and risky.

 Part of my struggle is that after five months, I still wrestle with continuing on  Aromatase Inhibitors. The drugs are supposed to decrease the chance of cancer recurrence. I tried Anastrozole, then Letrozole, then Anastrozole again. I hate Anastrozole, but hesitate to again switch to another. Some days it’s awful, with intense fatigue and some mornings I wake up very depressed. Other days, I am fine. Hot flashes, neck and hip joint ache are consistent, but mood isn’t. Other aches come and go on different body parts. My brain is in a fog and I can’t remember what I was doing a minute ago.

Even the IDEA of this drug is overwhelming because it is not kind. It weighs heavily on the body and spirit. A five year sentence of misery is a long time. But once a person gets cancer, they are tainted with the specter that it might come back, despite all the bodily assaults of treatment. An evil cancer cell might lurk in the depths of the body, waiting to grow. Obsessive research online yields no definitive answers on what to do. Prediction models of cancer mortality are just that--guesses of what might happen.

I want my old pre cancer life back. Estrogen helps with mood, bone health and the lack of it taxes the mind and body. I have gone from hormone replacement to hormone deprivation and it feels awful. It always feel like something good is missing.

I suspect a man came up with these drugs, and thought that they were a good idea to take for FIVE years or even TEN in some cases. If he had to subject himself to this god awful medicine, it would have been a different formulation. A woman would have found some way to make the drugs more bearable. 

It’s tempting just to chuck it all and take my chances for recurrence. Two other drugs are options, but not very good ones. Tamoxifin causes blood clots and isn’t as effective Aromasin is expensive even with insurance. They both still cause the hot flashes, depression, fatigue and joint pain. 

I don’t know where my life is going, but it would be nice to be able to diminish the specter of cancer that is looming over it. Meanwhile, the world stumbles through Covid and the election nears. With fires, floods, drought, hurricanes, murder hornets and a pandemic, what’s next 2020? 

At least my head is no longer bald, though five months after chemo my hair is not even an inch long and is growing in random direction. Maybe it’s waiting to thrive too.

  

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.