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

I AM SICK OF SUMMER

This is the worst part of summer in the desert. The earth is heated up from baking in the sun for months. The air is dry enough to heat up past 110 degrees, but it's not dry enough to cool off at night. August has that special combination that makes the heat more miserable than at other times in the summer. A week ago the temperature reached 117 degrees. I live in a desert and know it gets hot, but enough is enough.

                      I AM SICK OF SUMMER

Sweat. 

June denial. It’s not so bad. Cool mornings. Deluded reality. Thermometers gleefully bursts past 115 degrees, in a fit of spite. Dragon’s morning breath.

Plants shrivel in the outdoor oven and reach; plaintive arms to the sky. Desperate for relief.

The parched earth sighs.

White, blinding light sears the skin. Dogs pant, their heads droop.

Dripping sweat.

July despair. Heavy, stifling,  never ending suffocation. A.C. runs nonstop and swallows money.

Luscious, fat moisture of bloated cotton puff clouds entice; then vanish.

Gargantuan brown swirls of dust tentacles howl in. Lightning flares. Thunder rumbles. Trees blow over. A tornado of dead leaves. No rain.

Giant bugs stumble; meander aimlessly, confused.

Snakes hide. Lizards flee.

Dripping, sweaty sweat.

August disgust. Dispirited souls. Time stops in purgatory. Life is pointless. Outside tasks are too much effort. Monster heat feeds on human energy.

The sky rumbles and urinates.
The air cools, briefly bearable. Toads emerge from their holes.
A vicious sun re-asserts control.

Less sweat.

September hope. Summer loosens its grip, but still holds on. The glare wanes. Air softens. Summer birds leave, flying off to gentler climes.

Two months more and summer’s gone.

I can’t wait.

Ironman Arizona Race Report

I have a love/hate relationship with this race. The run course is flat, and at times creepy in the dark, remote areas in the wee hours of the evening. Some parts of it smells like sewer gas. The miles of concrete destroy my feet. The three loop bike course is ugly, boring and times evil when the wind comes howling out of the same exact diagonal as the Beeline highway. Past memories of the exhaustion from futilely fighting the wind were indelibly etched in my brain. Countless hours of mind-numbing training on this road made it difficult to tolerate its existence.

Still, Arizona was the one race I thought I could do, since I had finished it before. After being forced off the Ironman Lake Tahoe bike course last year, it seemed like a good idea to sign up for Arizona. Maybe, I would finally get the finisher’s high or I could be faster than the last time I raced it. It might make up for the rest of my crappy race season this year. I was wrong.

The line last year for registration. Bring your own chair.

The rest of the world had the same delusion. This race gets more crowded every year and sells out when registration opens online. Hopefuls think that the swim, bike and run will be kind to them.

The day started with traffic gridlock getting to the race site in the morning. I tried not to get stressed as time slipped away while the line of cars in front of me barely moved. A half an hour later, I reached the parking area. Half dazed from lack of coffee and sleep, I walked in the dark to the transition area.

I felt irritable negotiating the crowds in transition, and wished they had left their strollers, significant others and small children behind. The time before a race was filled with dread of the unknown and innumerable tasks to do. I had to drop off bags, get my bike tires pumped up, get body marked and stand in a long porta-potty line. Why can’t these people poop faster? I wondered if I would be able to start on time.

The ducks seem happy

I usually dread the swim. Fear intensified the unpleasantness of immersing myself in cold water in the chilly dawn morning. I was herded into the lake with the other masses. To get in involved climbing down a set of stairs, jumping off into the green, murky water and hoping that an unseen obstacle didn’t lurk under the surface. Plus, not hitting the other bodies already in the water. The process was so slow that the start was delayed five minutes to 7:05 a.m. I went in and was immediately was hit by the chilliness of the water, but it wasn’t the face-stinging cold that I have encountered before. 

The start line required a swim under a bridge, but usually what I thought about was not where I was, but being pummeled by all the other swimmers. In other races I had felt an almost mystical calm before the swim, but now I only thought about the task at hand. The usual emotional drama of the mass start wasn’t there for me. Spectators think it’s great, but they weren’t in the midst of the flailing arms and legs, which can cause injury.

Practice swim. The start line is beyond this bridge somewhere.

The swim was one loop, which was great because the fast swimmers were out of my way, but it went on forever. The buoys inexplicably zig-zagged, if they could even be seen in the glare of the rising sun. The lake curves, which I always found to be slightly disturbing. I appreciated having so many lifeguards in kayaks, but they were an obstacle sometimes.

After an eternity, I reached the turn buoy, went across the lake and turned back west. The sloshing water grew choppier and the surface rippled with the unwelcome wind that had picked up. Other swimmers were struggling and hanging onto kayaks. I felt strong and in control, but battling the chop took a lot of effort. The conditions would have been difficult for the unfit or inexperienced, but I had been in worse.  

At last the final turn red turn buoy appeared. The water was clogged with kayaks and people were cheering loudly. This probably indicated the swim cut-off was near, so I went as hard as possible. After being hauled up the stairs by a volunteer, I looked at my watch and inwardly groaned as it said 2:08. I wished I could have swam fast like anyone else. I still had time, but had to hustle.

Not being hypothermic after the swim for once, I got dressed fairly quickly with the help of a volunteer. Having sun screen slathered on my legs by volunteers felt nice. I could get used to that, like it was a spa. I had my bike handed to me and I got onto the course. 

No time to pee and I really needed to. I hated riding a bike with a full bladder and stopped at the first porta-potty. Some people pee on their bikes, which can be entertaining to watch, but it would have been treacherous to be downwind of in this weather. I didn’t have that particular skill set.

The bike route is considered by fools or the unwary to be fairly “easy”, but it can turn into a screaming harpy in the wind. And wind there was. A mind-numbing lap up, then down a hill three times. Descending was much faster than ascending. I really wanted to avoid the soul-crushing nightmare of not finishing in 2008, when the temperature was ninety degrees and the wind twenty-five miles per hour. 

The scenery was a unpleasant mix of industrial areas, ruined buildings, trash, and stark desert. A Sonoran Desert version of an Appalachian slum. Plus, the route passed a dump six times. If the wind was blowing the wrong way, it could be an olfactory assault. Today it was.

I was in a hurry, so I ignored the ugly surroundings and stared down at the road while other riders whizzed past me.

The first lap, I made my goal time in order to beat the cut-off, but I had to ride hard to do it. Like the swim, the rest of world biked faster with less effort. I turned around to ascend again past the cheering crowds in the Tempe streets.

Six miles into the second lap, I shifted gears and my chain fell off. I put it back on, but the shifter cable was loose. I stopped to have it fixed and went on. Around mile fifty-two, the wind had picked up to about twenty-five miles per hour and the uphill was slow. My aspirations for this race quickly vanished in the evil breeze. Doubt and despair dropped into my mind and constantly nagged at me. The fear of not being able to finish made me want to cry. I was losing the battle. Still, I desperately pedaled on, exerting a lot of energy to go slowly up. My leg muscles were threatening to cramp, with stabbing pain at random intervals.

My coaches were a welcome sight up at the top of the hill. I shouted that I didn’t think I could finish, and one said I have 3.5 hours and that I could do it. I doubted it, but decided to try. Flying downhill, one of my contacts fell out. Luckily, it was out of my weaker eye and I could still see fairly well. What else could go wrong? No time to stop and put in another one. I got down in a short fifty-five minutes with the violent tail wind.

On the way up again, making the 4:15 cut off at the top seemed unlikely. The sun was lower in the horizon. Other people climbing in the fading light slowed down and stopped on the road, as if they were giving up. At least I could get a ride at the aid station if officials took my timing chip. Near the top, a rider coming down said that they were changing the cut off to 4:30 and we had three minutes and could make it. Persistence might be rewarded. I pushed my screaming legs around faster, heart pounding and got to the ninety-three mile turn-around in time while the volunteers cheered. 

On the way down, the tail wind had lessened, which annoyed me. It had punished me all day and now it was failing to provide a last push. The road was difficult to see riding into the sunset with my blurred vision. At the last aid station, someone said it was 5:21. Getting into transition by 5:30 was unlikely, but I pressed onward anyway. At the finishing chute, people were cheering loudly, so there might be a chance. I made the cut-off by five seconds. Five seconds! When I found this out later, it blew me away. It was the best part of the race. One small victory when all seemed lost.

A volunteer led me to the change tent. Somehow, they expected me to be able to walk when I could barely hobble. They helped me dress and I put another contact in my eye. I stepped out of the tent and the sky had turned pink. 

The folly of the effort of riding as hard as I could for 112 miles hit me. Moving was painful, let alone running. I walked in the dusk for a few minutes, hoping that the pain that came with every step would lessen. Eventually I could run, but it was feeble.

Since I had gotten in so late, I had less than six and a half hours to finish a marathon. In normal circumstances, this would have been doable. Unless I miraculously perked up, it was impossible. Sometimes it happens. A person keeps moving, gets a second wind and speeds up. That’s why giving up was unacceptable, if a chance existed to turn a bad race around.

The first part of the run course was an out and back along the south bank of Tempe Town Lake. High rise buildings were lit up in the night. Some participants were the walking dead like me, some were actually running. I couldn’t move fast enough. My legs went through the motion, but didn’t propel me. My feet felt like I had rocks in my shoes.  I passed the cheering crowd, then went into silent darkness. The aid stations had a variety of offerings, but I mostly drank coke and chicken broth, which was the food of the gods. One offered bacon, but at this point, it would have been a dubious choice. Beer, on the other hand...

Lovely view on the run course.

An hour down, and I hadn’t gone four miles. Like a dream where I am frantically try to get somewhere, but never do. To finish was hopeless at this point, but I didn’t want to stop until someone took my timing chip. The humiliation was less when someone else forced me to quit. I crossed a bridge and reached the creepy part of the course west of the lake illuminated by a sickly yellow light. Airplanes, landing at the nearby Sky Harbor Airport, roared overhead occasionally. Remnants of the choked off Salt River ran below the path. It was framed with an expressway to the north.  I thought I heard a scream in the dark, brush-filled hollow.  Hopefully, not an athlete. My feet felt worse with the endless concrete.  

People tried to be encouraging, but I couldn’t summon much cheer in my deep funk. I thanked them, but I didn’t smile. The worst were the ones who assumed that I was almost done. Just shut up! I longed for someone to put me out of my misery, but I didn’t see anyone with a gun. Which of the nine circles of hell was I in?

I was resigned to my fate now and felt like a loser. If only I could have biked or ran faster. I reached the part where the first lap splits off from the finish line. I could hear the announcer shouting “you are an ironman!” to the finishers. It wouldn’t be there for me. No cheering crowd, bright lights nor medal. Someone from my tri club walked up to me and mentioned something about being almost done. I said I was only on the first lap and wouldn’t finish. She hugged me and I was touched.

I asked a volunteer where the first lap went and he walked with me for a while. Then another one took over. Maybe I looked like death and he was worried my body would litter the course. I tried to run to get it over with. I finally met up with the chip-taker guy at the 13.1 mile mark and my race was officially over. I was sad and relieved.

I should be happy I got through the swim relatively unscathed and that I actually finished the bike in tough conditions. The rest of the world would find a 2.4 mile swim in Tempe Town Lake and a 112 mile bike incomprehensible, not to mention repulsive. In the unreality of the triathlete world, it is more probable, making it easy to lose perspective about the difficulty. Everyone else can do it, so why can’t I? 

The training was awful sometimes, but it forced me into a higher level of fitness. With a bad race, though, it seemed pointless. I missed the joy. No finish felt like failure.  

As hard as I tried, I just could not conquer this race with the howling wind on the butt ugly Beeline and the bleak banks of Tempe Town Lake. I am not up to going through this again, at least for a while. And if I do, the suffering had better be in a pretty place.