Castle Creek Triathlon

 

Among the things I have missed in 2020 besides traveling and actual human contact is in person triathlon racing. Virtual just doesn’t cut it for the real thing, whether it’s social connection or racing. A decent conversation with a disembodied head on the computer screen is hard. Racing alone takes discipline with no one around to motivate me and it lacks the fun and camaraderie of the actual experience. When this Lake Pleasant Race was actually approved to go on, I signed up for a chance to have a modicum of normal.

I didn’t feel particularly in shape for it. I had been consistently training, but not intensely, since I was not feeling up to it. Chemo, surgery and radiation had sucked the life out of me and five months later I still wasn’t recovered. Lake Pleasant is nothing but rolling terrain and climbs. I had no energy to run train for hills and the weather had been insanely hot for months. Hilly bike rides and open water lake swims were at least some preparation.

Of course, if a race was scheduled, my bike had to fall apart. On a ride three days beforehand, the seat seemed loose. With no tools to fix it, I just kept riding. Arriving home, as I dismounted, the seat sadly flopped down and sagged sideways in disapproval of my ineptitude. Upon inspection, a screw and a part was missing. Without a functioning seat, the whole bike was useless. Maybe my mountain bike was an option, but it would be painful on the hills.

The next day, I retraced my route on my mountain bike and found the missing seat piece laying in the street, but no screw. During the ride the cog on the mountain bike drive train froze. Seriously?  Am I cursed by the bike gods? I still could ride home, but the chain complained the whole time.

Option C was my old road bike. It was nice in its time, but only three of the 24 gears worked because rear shifter just didn’t feel like moving anymore. Also the bike was an iron horse compared to my tri bike, so climbing hills would be a lot of effort. Between my bike woes and my tired body, my expectations were low. But at least it was a real event with actual people.

Racing during a pandemic is a different animal.  People are potential plague carriers and have to be spaced apart from one another. Mask wearing is necessary, at least while milling around. I got there early and set up. Due to Covid, there was a lot of space between the bikes, which was an advantage. No one to intrude on my space or knock my stuff around. For the water entry, we had to stand apart on the ramp and enter the water in timed intervals. 

Lake Pleasant can whip up with the wind, but the water was warm and smooth at 78 degrees. The temperature was cool enough to allow a wetsuit, but I would have worn one legal or not. Swimming in deep, murky water is scary enough without the buoyancy of a neoprene wetsuit to prevent drowning. At this point in 2020, I did not need more stress. 

Sometimes,  a swim start makes me hyperventilate with panic, but this time was easy. I swam fairly steady and went faster than I did in training. Somehow, I added 160 yards, not that I needed to swim any longer and took 27 minutes, not counting the long slog up the ramp. I tugged off the wetsuit in transition and mentally gritted for the bike ride.

The first hill was steep seemed liked a 10% grade and it was all I could do to keep moving. In laymen’s terms 10% grade is a “standing on the pedals to force them to turn and hoping not to fall over climb from lack of momentum.” If only the bike had a lower gear. Was I going to make it up without getting off and walking? Three speeds on my 2001 Trek road bike wasn’t enough. This bike sucked. I feared trashing my legs for the run, but got through the first loop.  Downhills saved me. In a sick way it was fun to conquer the terrain, despite the physical suffering. 

But it was still a relief to get to the end with no mechanical problems. The bike and I didn’t fall apart. I thought the ride would take an hour for 12.2 miles, which was slow as hell, but it was about 56 minutes, which was just less mediocre. I had remembered the hills as being tough, but not as bad as they were with an a three gear, heavy piece of crap old bike. It was a reminder why I don’t do a lot of Lake Pleasant races.  It’s humbling because the terrain reminds me of my strength and speed limitations.

I got into transition and dumped the bike to go slog on the run.  With a lack of run training on hills, they would be slow and painful. The route went up the god awful hill again, then turned down and up another nasty climb. It didn’t feel as bad as expected. I had estimated a lot of walking and except for some steep ascents, the miles were mostly functional running.  

The whole race took 2:11 to finish. It didn’t matter being at the tail end of slow, that I had to ride my crappy bike or that I wasn’t strong enough to run fast up hills.

After an abnormal year it was good to have “normal.” 2020 threw at me the physical discomfort and emotional distress of cancer treatment; long periods of social isolation; depression; the stress of dealing with a pandemic; and lack of anything to counter the bleakness. All the cheery optimism blather about “being in it together” and “you are not alone” didn’t make this steaming pile of turd year more bearable. 

So, it was a relief to finish, see people I knew and have an actual event despite Covid. Months of physical weakness from treatment made me doubt my ability to swim, bike and run in succession without keeling over. But my arms and legs still had the muscle memory to get me through water and up hills. They worked better than the ancient bike, which was reassuring.

All the crap didn’t beat me down. A hint of the high that I used to get when I first started racing emerged. Speed didn’t matter, but conquering the terrain did. Perhaps the threat of deathly disease changed my perspective. Or maybe this year sucked so bad that any good experience was appreciated.

For real.

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.

CHEMO

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

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

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

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

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

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

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

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

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

FIRST TREATMENT:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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