Four Years Out From Cancer Treatment

Does time heal all things? Four years have passed since the end of active cancer treatment and almost the same amount of time since starting “inactive” treatment or aromatase inhibitors. So far no evidence of disease, though the effects of treatment of disease still hang around–scars, numb toes, joint pain, brain fog, slightly wavy hair, sparse eyebrows and eyelashes.

Time hasn’t done much for my disgust with fragrances, but they usually aren’t the gut punch that they used to be. Why do people buy these toxic products? They are putrid, noxious, fake versions of odors that are supposed to smell good. Fabric softener wafting through the neighborhood is air pollution. Stop putting this crap in your laundry.

My energy has never really come back to pre-cancer levels. Maybe some of that is old age, but I suspect past and present drugs to prevent or kill cancer cells also sapped the life out of me. It’s hard to know if I am overdoing it until afterwards, when the urge to lay down hits, but it doesn’t ease the fatigue. Part of me wants to do a lot of projects, but the other unmotivated part says “meh”. The list of things to do sits with few items crossed out, especially if they involve hiring a stranger to fix things.

I still try to be active, but not as much as before. Overdoing sometimes has the consequence of an overwhelming feeling of fatigue. A lot of energy went away and never came back. Part of that is the hormone blocker sucking the life out of me. Doing things requires weighing the cost in energy and mood. Exhaustion from a cough and cold made me cancel a bird trip signed up for weeks in advance.

The loss of motivation and ability to do a long run or race is depressing. Most people don’t do ironmans forever, but at least they have a choice. Racing used to be important to me, but after the pandemic, not as much. Time is limited and the world is out there to be explored. Hours long workouts don't seem viable.

Pain comes and goes. My tooth hurts, then the ache goes away. Excruciating back pain comes on suddenly, then goes away, usually when I see a doctor about it. It’s maddening. It’s nice that the problem goes away, but only after worry, time and money are spent chasing the solution.

 I have learned to take the initiative and not wait for a doctor to notice a problem. After repeatedly tripping, I saw a neurologist who ordered a brain MRI and then PT. Falling often banged up my poor knees, which would then bleed profusely, dripping down my legs. A bad fall would hurt for weeks. Luckily, a good physical therapist helped my balance as well as neck and back pain.   

The supplements that make life semi-

                                                      bearable. Not all are pictured

I still use support groups, but they seem less important.  Just out of treatment, support groups helped my sanity and pandemic isolation. Now, being this far out from treatment, hearing about about breast amputation is a bit triggering. Still, maybe I have moved on, but need the connection of people with similar experiences. People who haven’t been through this experience generally don’t understand it. “You are back to normal, right?” Not really, like ever.

Brain fog has stayed the same, probably because of the hormone blocker. The brain needs estrogen to work well. Everything takes longer due to not remembering what the hell I was doing or need to do. Leaving the house requires an inventory of what I need to bring. Sunglasses? Oh, they are in my hand. Forgetting costs time and money. The right word escapes me in a conversation. An important detail gets lost in the muddle of scrambled thoughts. Multi-tasking is out because it requires the mind to work well.

My biggest issue at this point is whether to continue more than five years. My oncologist thinks that the Breast Cancer Index Test would not be helpful, since I am “high risk”. I disagree since I was only one point into the range of needing chemo according to the Oncotype Test that analyzed the tumor genetics. The tumor was small and had not gone to nearby lymph nodes. Counter to that is a strong family history of cancer and dense tissue that can hide suspicious areas. Logically, it would be better to have more protection against recurrence, but quality of life is also a factor.

All the forced interaction with doctors have made me skeptical about what they say. One of the side effects of hormone blocker is loss of bone density. Reclast was recommended for me, but it caused me eye inflammations. Doctors don't want us googling everything, but they don't tell us enough. Trust, but verify is the old adage. Being one's own advocate is essential. I declined any more bone drugs. Hopefully, the bone density will not decline too fast.

Hormone blockers for me have ranged from utterly unbearable to barely tolerable. Tons of supplements, an antidepressant and lots of exercise make taking it manageable, but at times the side effects are miserable. The drug sucks out life and joy. Even fun activities have the happy edge dulled into a numb emotion. Sleeping is difficult at times, making me feel like a zombie the next day. Sleep is precious and I need it desperately.

The worst is the fatigue that it brings on.  Stamina to do things like travel or even yardwork seems precarious. Will a burst of activity result in an exhausted stupor the next day? I never know. I don’t expect pre-cancer levels, but it would nice to be more functional.

Sometimes, I cheat and not take the pill if I need to travel or engage in a strenuous endeavor. The brain needs to function to solve various challenges of navigating in a strange place. The body needs energy to hike across challenging terrain. Living takes mental and physical stamina that lack of estrogen takes away.

I want my life back, or some semblance of it. The idea of continuing the drug distresses me hugely. It’s mental as well as physical torture. A little pill cannot definitely prevent cancer, just give me better odds. The question is whether it’s worth it. More misery for more maybe disease free years? I just don’t know.

So no, time doesn’t heal everything, but I am grateful for what I have and what I have avoided. No amputations or recurrence yet. But life is short. Happy needs to be chased. I can’t wait around for someone to take me on a trip, to do something scary and adventurous with, or to do a bucket list item. I just have to find the damn energy to do it.

 

 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

Tower of Terror

 

The end of chemo is a glorious time. It’s like finally reaching the mountain summit and all the muscle pain, strain and sore feet from climbing fades away. A year ago, April 30, 2020 was that day. 

The process to get to the end was wretched. The deep body sickness affected my psyche, with a  dive into a dark abyss of fear and misery. It was like having the flu for months on end. Even just four session seemed impossible to endure. End time felt worse and took longer to recover from. Just barely functioning was difficult.

The side effects were numerous. Hair loss, mouth sores, loss of appetite, nausea, weakness, extreme fatigue, gum pain, dehydration, eye inflammation, anxiety, high blood pressure, depression, neuropathy, rashes, brain fog, constipation, diarrhea, abdominal pain, among others.

It’s no wonder that I felt like dancing out the infusion room when the last drops of poison dripped from the I.V. bag. I would feel bad afterwards for weeks, but the healing process could begin. Hope shined in. It felt glorious.

I haven’t been back since to the four story building where I had the infusions, but passing the exit on the freeway reminds me of the experience and I inwardly shudder. It’s my Tower of Terror. The thought of even setting foot in it again brings up the memory of all the countless hours sitting alone in a chair watching the I.V. tube of death dripping into my vein. When the bag  emptied, my heart  raced and an overwhelming sense of panic set in.

It’s strange how the brain works. The sight or smell of something dredges up a long forgotten memory, like the scent of pine evokes Christmas or an old school building reminds an adult of  roaming grade school hallways. Just the thought of chemo brings out a deep revulsion and a flight response. I want to get away from any hint of it. Maybe that’s why chemical odors bother me so much, with the unconscious association 

Luckily, I haven’t had to set foot in the infusion building since last August. I don’t even like being on the same street or even in the same area.

It’s taken a lot work to beat back the mental trauma of chemo. Hormone blocker pills worked against recovery. It took a lot of Zoom support groups, doctor visits, tons of supplements, lectures, reading, therapy and tests to get to a place of healing. I still can’t sleep, have hot flashes, back, neck and hand pain mixed with bouts of depression and anxiety from the pill.  It’s a struggle to live with it and it’s tempting to quit and take my chances with cancer recurrence. 

Still anything is better than chemo. Hopefully, time and therapy will cure the cure.  Hopeless thoughts aren’t reality and the mind gives them more weigh than they deserve.

Maybe remembering the exhilaration of finishing instead of all the grueling discomfort to get there will diminish the weight of bad memories. 

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.