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.

HAIR LOSS AND CHEMO

When I had more hair

My initial negative thought, when I found out about needing chemo was, besides the million nasty side effects, that I would be bald. I get to feel bad AND look ugly. Baldness was not a good look because I just didn’t have the face shape for it. My high forehead desperately needed to be covered with bangs. Only I wouldn’t have them. The whole concept was difficult to imagine while my head still had hair.

Having hair is something that I took for granted. It kept my head from getting sunburned in the summer and from getting cold in the winter. A strand of hair was something to fiddle with when nervous. Destroying this feature was a drastic change and I hated change..

My hair was thick, straight, medium length and grew fast. Not liking the natural drab color with gray, periodically I had it colored with blond highlights. Hair was good to have.

Hair loss typically occurs between the first and second chemo treatment. The toxic drugs kill healthy, growing cells along with the cancer. Medical people dismiss the impact and say that it will grow back . But they aren’t the ones with their hair falling out. The condition being impermanent doesn’t make the process any easier or lessen the shock of losing  hair. Something that had been there forever is gone. It’s death at a cellular level. And it looks bald for MONTHS.

My hair loss began at two weeks from the first treatment. I dreaded the start of this but knew it was inevitable. One day clumps of hair came out when I passed a comb through it. The bare spots started at the top at the part, then spread gradually out all over. Eventually, long strands tentatively hung on, with large areas of baldness like Gollum from Lord of the Rings. The look was hideously corpse like and worse than being totally hairless.  

Shaving it was inevitable. I hated to give up the last remnants, but they were uncomfortable. The hair shed all over, my scalp hurt and itched. Finally, my hairdresser shaved it off. I covered my bare head with a cap. 

Now bald, unexpectedly the exposed skin felt cool. This sensation was weird, like wet hair that wasn’t there. When I shampooed my head, I still expected to touch hair and only had stubble. It dried almost instantly. My blow dryer and curling comb sat in the cabinet abandoned. 

The worst part of being in this state of appearance was that it screamed CANCER PATIENT and SICK It told the world what my state of health was, which I would rather people not know. It reminded me that life wasn’t normal right now. But I wasn’t motivated to get a wig. The summer heat was coming on and encasing my head in a hot wig sounded unappealing. Besides I had a hermit like existence due to the coronavirus anyway. Not that many people I knew were going to see me.

I was numb about the hair loss, in order to not think about it. The other side effects felt worse and were more difficult to deal with. Losing my appetite and feeling dead tired plunged me into a depression. I just accepted the condition, though being bald sucked. The actual event wasn’t as bad as the anticipation, though. 

I still am a little self-conscience and don’t want people to see my present state. I always put a cap on when going outside just to fetch the newspaper. I wear a hat in anyone’s physical presence or in teleconferences. Out of sight, I don’t even think about it. My image in the mirror looks like a stranger.

It’s just not about being bald, it’s the difficult process of toxic chemicals also taking well-being, energy, a sense of peace and joy. As I have now finished the chemo, the day awaits when the side effects wear off and my hair starts to grow again in a month or so. My body will heal from the poison and come out on the other side to recovery.

CHEMO

Hopes springs eternal that I will hike the Grand Canyon someday.

Cancer treatment is a series of physical and mental bludgeons. It’s not a stupid journey, it’s a roller coaster that threatens to derail. The end seems near, the body starts to recover, then relief gets snatched away. The train screams downward, off the cliff. A bad test result changes everything.

I assumed a run of the mill appointment with the oncologist. Not being one ease into softening the blow, he whipped out the Oncotype report and stated that my score that one point too high. The test scores the likelihood of re-occurrence of cancer and who would benefit from chemotherapy, which the doctor recommended . The one thing that had gotten me through all the tests, the surgery and radiation was doctors telling me that chemo was probably NOT needed.  Now, it suddenly was.

It’s not like the original Seeds of Death had children. No tumor was present anymore. Chance of re-occurrence was a nebulous concept. My internet reading said that Oncotype is the gold standard of testing, but what if it was wrong or had a one percent error rate? Unfortunately, I couldn’t bet my life on ignoring it and had to suffer the consequences.

It was an emotional blow. Of all the nasty cancer treatments, chemo was the most dreadful with neuropathy, fatigue, hair loss and god knows what other side effects. It was medically sanctioned poison. My spring plans could be ruined–races and a trip to the Grand Canyon that I had been waiting years to do. 

The terror of the unknown was the worst part. How bad would I feel? Would I be able to function some? How would my body react? How would I cope? Would permanent damage occur? Nothing was in my control. It would be a longer and more involved treatment than radiation or surgery. The fact that I had heard survivors talk about neuropathy and extreme fatigue, even after treatment was long done didn’t help.

The rest of the day was a mental daze. I thought I was done with this shit, now I had to face more discomfort and fatigue. I wanted to cry and was a nervous wreck.  How had this come to past?’.

I saw a nurse for the chemo teaching and felt better. She explained procedures, the medicines and their side effects and how I would feel. She didn’t discourage physical activity, but said to listen to my body. This was a relief. Maybe I will make the Grand Canyon after all.

I got prescriptions for anti-nausea medicine. The nurse said I will feel okay the day of and two days after treatment, but the fourth day might be rough. I will have three weeks to recover, with four sessions.

FIRST TREATMENT:

My friend went with me because I wasn’t sure how my body would react.  I found out they were going to use Neulasta as well. My materials had no information about it and I thought that was going to be given later, after lab tests. It’s a doser attached to my abdomen for 27 hours, at which time it injects the dose over an hour. So much for running and swimming that day. It has the side effect of bone pain because it draws white blood cells from the bone marrow. It also costs $9200 a dose, which hopefully insurance covered because that’s a hell of a lot of money.

The I.V.’s were tedious process. The mental distraction of my friend’s chatter was good to keep my mind off from pondering the implications of receiving toxic substances. It was surreal that this was actually happening. I kept my feet and hands in socks with frozen ice packs most of the time to ward off neuropathy. The first one, Taxatere was supposed to be 1.5 hours, but the tube leaked and they had to make up another one. It had steroids in it, which made me anxious and made my heart race, especially when the bag was near empty.

The second one, Cytoxan, took an hour. I stared up at the bag willing for the fluid to be gone The last one. also made me panicky. Before that dose was finished, they installed the Neulasta device on my abdomen, which stabbed me with a little metal hook device. It was awkward to wear and I feared dislodging the pricey thing. We went home when the second I.V. stopped.

I didn’t have too much nausea the rest of the day, but I was tired. Eating was possible, but I didn’t have much appetite.

The next day, my brain was foggy brained and my body was tired. I took loraditine for the Neulasta dose later. I had no nausea, but no hunger, either. I muddled through the morning, but felt better in the afternoon. The steroid pills made me feel icky. The Neulasta device went off without any problems.

For the next week, the side effects of the chemo drugs attacked my digestive system. Every pre-existing problem that I had was aggravated.  Years of reflux taught me that I can’t eat fatty foods or dairy without indigestion. I had learned to adjust my diet, but now couldn’t figure out how to deal with it. The reflux flared up badly and stomach and intestine motility was sluggish, causing bloating and pain. Food that I used to love was repulsive. Tragically, chocolate tasted bad, coffee wasn’t as good and beer made me severely gassy.  Hot food  hurt my mouth. Even pretzels upset my stomach.  To not like food wiped joy out of my life. The misery at times was unbearable.

The anti-nausea pills didn’t help the lack of appetite and I had to force myself to eat.

Exercise was still possible, but it was a struggle. Some movement was better than nothing. It maintained my muscles, kept my immunity up and saved my sanity. I wanted some sense of normalcy. After years of consistent raining, it probably wasn’t as hard to keep up as if I had let it lapsed.

For a few days after treatment, my brain still wasn’t functioning well and simple tasks took a lot of effort. The neurons weren’t firing and driving anywhere seemed risky.  How I was going to get through three more sessions of this?

One day, I had a massive bout to diarrhea. I pooped 12 times before it stopped.  It was violent, even more that I had gotten with any food poisoning. The doctor’s office and they said to take two tablets right away, then another for each incident.  Eight a day could be taken. The mistake was following the package directions which said wait two hours after food, and only take four per day. Normal instructions didn’t work against the firestorm of my bowels and the result was bad dehydration.

My mouth by this time had developed sores and felt like the bottom of a bird cage.  Acidic or hot food was painful to eat. At least sleep was better because of exhaustion. My hot flashes had thankfully disappeared for now. My temperature seems to be trending upward, though not at the point of calling it in.

The seventh day I was queasy most of the day. An anti-nausea drug didn’t help that much. I saw the oncologist and he arranged for me to have an I.V. That took another two hours, but it was necessary. I should drink more water, but it’s hard when  swallowing hurts. 

Since medical doctors couldn’t or wouldn’t really help my distressed mental state, I had a Reiki session the day after. It was relaxing and weird. Somehow someone waving their hands over me worked and I imaged or actually felt an energy field over my brain. The session was more relaxing than the last time I tried it. Hopefully, it will help. The therapist claimed that it was like having four hour REM sleep. I doubt I get that every night. Usually my full bladder wakes me up and I can’t get back to sleep.

By day ten my digestion was better, I had more energy and life seemed more bearable .As the second week passed, I developed an eye inflammation. Last year, the one in my right eye took four mouths to clear up. It started with severe eye pain, then redness and sensitivity to light. My retina swelled up and caused visual distortions. To avoid the other eye getting that bad,  I saw my retina doctor. One more thing to deal with. The eye got better with steroid drops, but the reaction from the chemo worried me.

About this time, the whole Corona Virus thing blew up. Grocery shopping yielded empty shelves.  The emptiness of the toilet paper aisle was stunning.  Oatmeal or ground turkey was gone. Going swimming or go to the library was impossible anymore because they closed. Group meetings and Reiki were cancelled. The physical social world shut down. The world had an air of unreality. Being in a pandemic and immune compromised was unsettling.

I had worried about chemo ruining all my spring plans and it turned out the virus cancelled all the races and trips anyway. Mentally, I resigned to the disappointment. It can’t be this bad forever. Certainly, life will be better when the chemo ends. Hope seemed like a long way off, though.

Countering all the difficulty was friends calling, offering support on social media and even people bringing my meals and supplies. I felt guilty asking for or getting help, but decided to accept it at the urging of a friend. It restored my faith in humanity, despite the toilet paper hoarders. My thanks to all the helpers in the world.