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. 

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.

CANCER TREATMENT AND EXERCISE

Ironman California 70.3, 2016, Last official 70.3 finish

I NEED exercise. Without it, I get depressed and cranky. An addict must have the fix despite bad weather, injury or sickness. I have ridden my bike with a broken hand in a cast, in hail storms and in hundred degree heat. I have limped to finish a run race with my knee torn open from a fall. Common sense does not always prevail.

Some people that know me think I am insane for even attempting long distances, or any distance at all, for that matter. I don’t do many full or half ironmans anymore due to injury and lack of speed. On the spectrum of crazy, I consider myself to be fairly reasonable. A hundred mile trail run or double ironman is not in my future. A reach goal is fine, but suffering excessively is not. Nor is being pulled from a race because I am too slow the finish the long distance within a time limit.

People who are seriously active also like to compete with one another in races and socialize. We have a common bond of loving physically brutal activity. It transcends political views, economic status and even personality. It doesn’t even matter how bad we suck at the particular activity. I am a horrible swimmer, a mediocre cyclist and a slow runner, but I do it anyway. Competing against myself is the object, since I have little chance of beating anyone else.

So anything that is an obstacle to this fix is a major imposition. Even early stage cancer treatment is disruptive. The body does not like being cut open, given toxic chemicals and being burned from the inside out. The abused tissue and bone reacts by saying “piss off, I am going to take a nap” upon any request to expend energy.

General recommendations for exercise with cancer treatment are 150 per week aerobic, 75 minutes harder effort. Quantifying effort is a vague target. One is supposed to be able to talk with effort during aerobic, but this would vary according to how physically active one was before cancer. If a person never got off a couch to walk a mile, it would be way more effort when unhealthy and suffering from the inevitable side effects of treatment.

Information about recommendations for a person used to activity is sparse. Maybe the “experts” assume no one does more exercise. Some say “listen to your body.” This advice is not helpful if the body and the brain is giving conflicting messages. Experts suggest some movement even if tired, but what is the limit? My heart rate goes up higher than normal even with slow movement. The balance is finding what the body can tolerate without stressing it too much.

Before, only two to three hours per week of physical activity was very little to me. When my cancer was diagnosed, I was training for an ironman. The peak was almost twenty hours of swim, bike and run. This amount is not typical, because it is entirely too time consuming and exhausting. Normally, it used to be about twelve hours per week for me.

Along came cancer and smacked me down. My usual training was altered drastically. Instead of biking or running hard or long, the intensity was determined by  fatigue. My body was in control, not my mind. The effort that would have been pathetic six months ago, was now the norm. It was utterly humbling. A ninety minute bike ride was now forty-five minutes. A ninety minute run was now thirty. It was a big loss of fitness from where I used to be in. I lost my mojo.

Each treatment had its insidious effects and misery. Surgery made me tired and healing cut tissue and chest muscles hurt. After clearance from the doctor, it was tough to run with the pain at first. The parts did not want to be jiggled. Gradually, I recovered enough to run a 5k race three and a half weeks later with a fairly normal time. That was the last race for a long time due to fatigue, weakness and the coronavirus cancelling the world.

Radiation, which was only a week, but twice a day, made me feel weak, tired and a little nauseated. The feeling of an all over body sickness would come and go.  Short bikes, swims and runs were s a struggle to get through.

 Unlike radiation, chemo had cycles in which I felt like utter crap for ten days, then merely bad for the other ten days. The predictability was an advantage in planning, but the side effects on the bad days were worse than the other treatments. Minimal training was a struggle in the bad days, then a little better in the good days. Sometimes I could barely walk a mile. It was nothing resembling what I used to do. The goal was to not totally deteriorate into a sagging bag of bones.

The easiest form of exercise was walking, which was done in the days right after an infusion. The hardest was running, which only went well in the second or third week of the three week cycle. Even good runs were slow with not much stamina. My legs were too weak to push off and I would have to stop and walk to catch my breath. Improvement was slow, only to be destroyed with the next infusion. Races became only a memory. So did having fun.

Even with a weakened physical state, some exercise was better than nothing. Sick or not I had to have my fix.  I would have been in a much worse state without it. It felt much better to move than to give into the depression and fatigue. It was a weapon to fight back with. Cancer and it’s toxic treatments wouldn't win. But some days it felt like I was losing to it.

Whether I will ever feel normal again to is yet to be seen. Losing physical capacity and energy is frustrating. To not be in control is scary. All I can do is forge ahead and hope some semblance comes back of what I was before treatment. It will take time, patience and persistence.

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.

RADIATION

Radiation is barbaric. Chemo is more so, but if I am going to get my flesh toasted, can’t it be a less odious procedure? Doctors told me that my options were to get cooked every weekday for a month or have Brachytherapy, in which a  probe the size of a thumb was inserted and left 24/7 for a week, with twice daily visits for five days to insert radioactive seeds. This would require restricting basic activities like showers and would hurt. This probe resembled an thumb-sized egg beater, with tubes sticking out. Nope. Nope, nope, nope. That thing in my body? How would it even fit? My second thought was can’t they do better?

Reading too many internet articles on radiation side effects had scared me. Flesh blisters, hardened flesh and fatigue sounded terrible. Did I really need to do this?

My medical oncologist suggested a doctor that has a week long/twice per day external beam radiation treatment, with no interior eggbeater probe. This seemed too good to be true, because the surgeon had not thought it an option and the radiation doctor had not offered it. Going twice a day would be pain, but the short time line could minimize side effects of fatigue and possible skin damage.

My first appointment with the radiation oncologist got off to a rocky start because she was late, but she seemed like nice. She apologized for the delay and explained that she had been using this radiation method for twenty years and that the short time period was an advantage. Wanting to get this treatment over quickly, I was sold.

The second appointment, a technician cat-scanned the area to be radiated and made a mold of the body to position it precisely. They also tattooed the point where the machine zaps the flesh.

The first treatment took about twenty minutes.  Ill-timed road construction made me late, which only added to the stress. My body was positioned and I had to lay still the whole time with my arms overhead gripping the hand rest. The machine hummed and whistled, passing to the right, then stopping for what seemed five minutes. Nothing felt hot when the beam moved over me. The round part of its head then rotated and passed back across to the left. The only thing to stare at besides the machine was the green laser light across the ceiling. Too bad a picture wasn’t up there to look at to ease the tedium. When it was done, someone came in the room to help me get up.

The decor of this place was much better than the usual medical institution. The waiting room was round with a tall ceiling, enhanced by organic wood cut outs and a fancy chandelier. The dressing room was decorated with butterflies. Still, I just wanted to get in and out in a hurry. After the radiation, I rubbed cream on the affected body part, which was red and hot, then got the hell out of there.

The after effects were sneaky. They would come and go and sometimes stay. I felt fine driving away the first time, then suddenly felt weak, tired and a little queasy. I continued to my destination, but didn’t feel that good.  I considered going home, but continued on. I felt a little better after a while. 

I got a swim in, then lunch. Exercise kept me sane through this process, even if I was too tired to do it well. It was something under my control that made life seem more normal. In the afternoon, I returned to the place using a different route.

I repeated the pattern. The next day, I ran, then went to the radiation place again. I didn’t feel woozy, but was tired. I got some grocery shopping done afterwards. The yucky feeling came later in the day. The breast was sore and looked a little red, but wasn’t too bad.  

The third day I felt tired and weak in the morning and it continued through the afternoon. I told the doctor, but she didn’t offer much help. It was something to suck up and get on with. A nap  helped. 

The fourth day I ran again, then felt crappy for the first appointment. Then, swimming in the cold weather, which was uncomfortable. The stiff wind blew on my wet arms. It was a struggle to keep going through the fatigue, but I stubbornly persisted.

In the afternoon, a nap beckoned, but had to wait until after the second appointment. The pattern of exhaustion seemed to be worse in the morning, better in the afternoon.

Friday and the last day of radiation! I felt icky again after the morning session. Afterwards, I saw the doctor. My usually low blood pressure was very high again.  My left arm has a lower reading, but they won’t use that one anymore, due to it being on the side of the surgery site. Maybe it was a problem to be looked into, or maybe it was stress. The fatigue after treatment will get worse for a while, then get better. The skin looked a little red, but was otherwise okay. Skin reactions can occur up to ten days after treatment.

Were they Really Gone?

I got to hit the shiny golden metal gong for the last treatment. Was this ordeal really over? The fatigue, the nausea and the stress? I almost felt a sense of guilt not going through as much as other cancer patients. Only a month of treatment with surgery and radiation. A week later, I felt almost normal again. I was lucky to be relatively unscathed. Maybe the ghost cells were still there, but the original Seeds of Death must be gone. In the mushy medical world of prediction, radiation was supposed to prevent re-occurrence, but not with total certainty.

What a relief. Life could move forward again. Or so I thought.

NEXT UP: CHEMO

Surgery

Since I had small, lazy  cancer, either a mastectomy or lumpectomy could be done. My goal was to disrupt my life as little as possible. A mastectomy would mean a 0-5% re-occurrence rate and no radiation, except if the nodes were positive for cancer. It would require 4-6 weeks recovery. The survival rate of a lumpectomy was the same, with a 5-10% re-occurrence rate, but would require radiation. The recovery would take a week. The trauma of removal and a long recovery of loping off a body part was not appealing, especially with a small cancer. I chose lumpectomy.

This recovery from this surgery meant no swimming for two weeks, no running or cycling for a week. This was annoying, but tolerable. Walking was allowed. At least my muscles wouldn’t totally go to hell. Being a Type A triathlete, it’s very hard to let my body go idle.

Transportation to the surgery and back would be a hassle. I hated to ask anyone to help, but had no choice. The schedule was stupid. I had to be at one place at 10:30 a.m. for a needle localization, then go to another place for the surgery and wait around until 3:00 p.m. This was a lot to ask someone. Maybe I could Uber down and have someone pick me up, so they weren’t waiting around forever.

Eight hours prior to surgery, fasting was required and drinking nothing except a cup of sports drink. At least I could get breakfast and coffee before 7:00 a.m. No coffee would be unbearable. Not being able to drink water made me anxious. I was a little light-headed riding down. A friend drove me and stuck around the area the whole time. I felt bad about the inconvenience to her.

The needle location involved compressing the breast in an mamogram machine and inserting a long, thin needle that projected out of the tissue. The imager suggested not looking at it and I had no urge to see an alien projectile emerging from my body. Then, they coiled it up and covered it in a bandaid. The needle insertion hurt, like the last time, even with numbing. At least I got to sit down and it wasn’t as much poking.

They made me take a wheel chair down and my driver took me to the other place. Again, it was the routine of registering, waiting around, and going back to a holding area. My driver took off after the registration. I found out to my surprise that someone was supposed to stay all night with me and that I had to get rid of my debit card and cash. But of course I had to pay their fee. It would have been nice to know this ahead of time.

I laid on a gurney for 1.5 hours until a nurse came and gave me an IV. I got rid of my contacts beforehand. I had been warm waiting, but when the fluid was injected, I got cold and my legs felt shaky. After some more waiting, another nurse asked me a bunch of medical questions. She was a talkative and no nonsense. She complained about the omission by someone of my support socks. My blood pressure soared again with the stressful idea of being cut up.

General anesthesia would be used, with a breathing tube. The anesthesia doctor came in and I mentioned my past experience after surgery that involved a splitting headache and vomiting three times. Hopefully, this wouldn’t happen again.

Reading a book about Alexander Hamilton passed the time in between the various medical personnel. Waiting was boring and stressful.  Finally, it was showtime. Surgery was supposed to last an hour and a half.

My surgeon came in and talked about the surgery and aftercare. The results of the test to see if the margins were clear would come in four days. Rarely, the surgery has to be done again. The results of the test on the nodes would take two weeks to come in. She suggested that my February 10k might be better to pass on because the side effects of the anesthesia last a long time. I was surprised to hear that, blithely thinking that I would feel fine in a short amount of time.

I don’t remember getting a sedative or anesthesia. Waking up, I was really groggy, but not in pain because the surgeon had given me a novocaine block. Wanting to really get the hell out of there,  I tried desperately to force myself out of the mental fog. It was dark outside and the holding area looked empty.

When I was more functional, they put me in a soft chair to get dressed. My driver couldn’t start her car, so she had to call her husband to jumpstart the car. I finally got out of there by six. We stopped by the drugstore to get painkiller pills. She had called my other friend to stay for the night. I wasn’t prepared for this and was stressed, but we adapted.

I ate some applesauce and plain brown rice, because I wasn’t super hungry and didn’t want to risk nausea. I went to bed about 8:30.

I was too tired to get up and take the painkiller at 9:40, but by 11:30, the novocaine had worn off and I hurt, so I took one. Sleep was difficult, especially on my left side. My back also hurt, so I tried laying on a lacross ball to unknot the muscles. The cat complained a few times during the night. All in all, a crappy night’s sleep.

“RECOVERY”

I underestimated how bad my body would feel. Not having had any heavy duty surgery since my daughter was born, I naively thought that normal activity could be resumed right away. Ice and Hydrocodone helped with pain, but not much. Then two days later, the pain lessened and fatigue set in. I walked for a mile the day after surgery, then gradually worked up to three miles running the week after. The jarring of running hurt the surgery site, but the discomfort got better. Cutting out cancer in a lumpectomy made rearranging chest muscles necessary, so they ached with movement.

A week later, I got my bandaids off, which was a relief. It was weird to take showers and feel like the plastic film on my skin was getting water logged. The tissue was still swollen and achy, but the margins were clear. There were two lesions. Two lymph nodes were negative, which was a relief.

TAKEAWAYS FROM THE EXPERIENCE:

1. Sometimes I have to accept help even if I don’t want it.

2. General anesthesia messes up the body for weeks.

3. Discomfort from slicing the body can last for months.

4. I hate being a patient. Recovery is boring and painful.

5. Even when I feel better, I still tire easily.

6. Even when tired, it’s good to force my body to exercise, though not at the same levels pre-surgery.

7. “Recovery” isn’t total recovery, but the fatigue and discomfort subside. Real recovery takes a lot longer.

NEXT: RADIATION

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