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.

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

More Things I Learned on the Road to Divorce(or from It).

It's been over a year since I was officially divorced on June 5, 2009. To commemorate the wonderful event, I looked back on what I journaled about last year. What I noticed:

1. The pain persists, but it loses intensity. You mourn what you think you lost, but you accept that it's gone. The expectations that you had for an easy, happy life are gone and you have to create your own happiness which is a lot of work. Without the delusion, you have to work on the reality of your relationships.

2. The anger persists, but it fades away. You don't excuse the bad behavior of your former spouse, but you accept that he or she is a douche and you are better off without that person. Some people are on their own path to douchiness and won't change. Anger takes energy and living in itself is exhausting.

3. You gradually gain some optimism that your life someday will be good, even if there is no sign that that is going to happen. You have to have faith in the process of healing, otherwise you don't have the courage to move on. I don't know if I will ever be happy, but I am working on it.

4. You gradually get back some self-esteem. It takes a lot of work, support from others and therapy, but you end up feeling better than when you were married. Whatever your spouse thought of you doesn't matter anymore. You expand your world, try new things and learn to trust yourself.

5. Doing everything around the house by yourself sucks, but you end up accepting your incompetence. My garbage disposal wasn't working until I read the manual to find out that their was a reset button on the bottom. Problem fixed. The pool pump hasn't been back washed in two years. Maybe I will pay someone to do that.

6. There is still the vast divide among you and people that seem to be happily married. I still marvel about the people in their own happy world with me on the outside looking in. It doesn't bother me as much as it used to because I know things aren't always what they seem to be.

7. The negative feelings persist, but you acquire tools to fight them. You step back from your emotions and ask yourself why you are feeling that way. The emotions may not go away, but at least you are looking at the cause and maybe thinking in a new, more positive way.

8. Healing takes time. Everyone heals at their own rate. I feel like I haven't come along fast enough, but then I had a bad day last week, which reminded me how paralyzing depression is. Sometimes depression is an unwelcome guest that pays you an unexpected visit. You have to come out of it in order to gather your energy to face the difficult things that you need to do.

9. The world is still scary, but you gradually gain a little more confidence in yourself to deal with it. Until last year I had never traveled much by myself outside of the state, but I gritted my teeth and got out there. It wasn't fun, but I did it. The world seems to be going to hell and the economy still sucks. I don't know if I will be able to take care of myself. I have to suck it up and try.

10. All the stuff you neglected while you were married come back to haunt you. Lack of friends, lack of investment in your career, lack of investment in yourself have to be dealt with. You have to go out in the world to re-build these things and it takes time and energy.

11. All the childhood issues that you have come out again-fear of abandonment, neediness, fear, rejection all rear their ugly heads. Your inner child is unhappy and needs to be dealt with. You have to grow up and it's painful.

At least I am in a better place than I was last year. That give me hope that the demons will go away, the inner child will shut up, and the pool pump will fix itself.