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.

Seeds of Death

Seeds of Death

DIAGNOSIS

Sometimes life is a body slam, coming out of nowhere.  I was just going about my usual innocuous routine, when bam!, an event knocked the wind out of me.

“It’s cancer,” the radiologist informed me after a biopsy.

I really didn’t want to go to cancer land. It is an alien, dark, menacing place. Not the words I wanted to hear. Ever. 

The biopsy procedure had been unpleasant. Normally, I tried to avoid doctors and tests unless absolutely necessary. Now I was sucked into a situation with no control. Medical people lie that’s it’s only “little pinch,” or“it won’t hurt,.”  The test was supposed more tolerable than in the past. As the radiologist, guided the needle through the tissue, I felt searing pain. My skin broke out in a rash. The ordeal made was tiring.

I had never had this result before with the many mamograms, ultrasounds and biopsies I had had over the years.  Biopsies had involved sticking a needle in the tissue, guided through mamography, and punching out a ribbon of flesh. The nagging thought in the back of my mind every time was maybe something is wrong, but it never was. Until now.

I got a mamogram every year because my mother and sister had breast cancer and my father esophageal cancer. Still, I didn’t smoke or drink heavily like they had, so I assumed my healthier lifestyle might spare me. Or at least, I hoped it would. The results this time showed something suspicious and a biopsy was needed to see what it was. 

The cancer was small, slow growing and isolated, but still a seed of death. The radiologist said surgery and radiation was necessary, but probably not chemo. I was lucky in that regard.

The cancer cells were the type that responded to hormones. This meant I had to give up hormone replacement. Hormones made me feel better, less depressed and have more energy. They made hot flashes disappear. Without drugs, the hot flashes came back, got more numerous and intense. I woke up several times at night drenched in sweat. The sense of well being was gone and I mourned the loss.

It meant that Aromatase Inhibitors would be a suggested treatment. This drug sounded like a bad idea. A brief internet search revealed nasty side effects like joint pain and hot flashes, which I already had too much of. Maybe it would prevent recurrence of cancer in exchange for being miserable for five years. This could be a poor trade off, especially since I only had two tiny seeds of death.

The next steps was a breast MRI and seeing a surgeon after the pathology report was done. MRI’s are claustrophobic and very noisy. This procedure required me to lay face down and not move. While it wasn’t physically uncomfortable, the confined space made me panicky. I had on headphones that faintly played music, except when the technician talked. The music wasn’t calming. I had a panic button to push, but the technician ignored it despite my numerous times that I pushed it. When the machine moved over me, and loudly banged continuously, I desperately wanted out and felt like I was suffocating. I kept telling myself that “it’s only temporary”, while hyperventilating the whole time. At least the result of that horrible experience showed that the cancer hadn’t spread.

WHAT THE HELL DOES IT ALL MEAN?

I alternated between anxiety and depression, thinking about the unknown future. The surgery and treatments sounded painful, exhausting and. detrimental to my mental health, fitness and body.  A side effect of radiation was fatigue and sometimes skin burns. Radiation was every weekday for a month. Slice and burn me in order to be cured? My routine would be disrupted and I had better things to do, like an upcoming ironman race and a trip to Maryland to see my daughter. 

 My attitude might have been different if my cancer was more advanced, but it was early stage. I didn’t want weight gain, joint pain, fatigue or skin burn. Some of the treatments seemed like over-kill and the necessity of them was hard to accept. Modern medicine was my enemy more than the cancer.

The whole situation felt surreal. Instead of being a healthy person, suddenly I was diseased. Normalcy had disappeared. It was hard to grasp the idea of being weak and vulnerable. 

I felt utterly alone. Who to tell and when was a dilemma, until I saw the surgeon and discussed a treatment plan. Giving someone bad news is a downer and rather awkward. Maybe they really didn’t want to know. The whole “you poor thing” was repulsive and I didn’t want the attention. Setting up the surgery could take a while. Why tell someone and let them worry a long time?

Still, the knowledge that this drastic life changing event was a burden that I wanted to ease. The temptation was to tell someone, even if they didn’t want to know about it. I kept my mouth shut for a while, but it was difficult not to share the turmoil.

Deep down, I knew that I would eventually be fine, but that the journey would  challenging. Pain and discomfort awaited. The body assault loomed. 

NEXT: SURGERY