Since ending my chemo and radiation I have struggled a lot with pain. Some of it is a result of the the chemotherapy I received. From that I have peripheral neuropathy in both my hands and my feet. So that means my hands and feet consistently feel like they have that "pins and needles" sensation — similar to what you might feel when a limb "wakes up" after "falling asleep". I have gotten used to it, so it doesn't bother me as much as it used to, but I do get flare ups from time to time and when that happens, it is very uncomfortable — even bordering on miserable.
Another side effect is due to the medication I take — Tamoxifen — which is an estrogen blocker. My cancer was ER+/PR- and HER2 + and what that means is my cancer was sensitive to estrogen and relied on the estrogen to fuel it's growth. That's the super simple explanation. Because I was also HER2+, that meant my cancer was an aggressive variety, thus the reason I had both chemotherapy and radiation. After those treatments were over I started with Tamoxifen to block my body from producing estrogen, therefore putting me into a manufactured state of menopause. When your body does not produce estrogen, you are more susceptible to post-menopausal issues, such as arthritis which I developed in both my feet (of all places). The Tamoxifen also has side effects of it's own: Bone and/or joint pain, muscle aches, hot flashes, extreme fatigue, depression, headaches to name a few and all of which I have experienced since starting it in 2018. I did play around with switching out with a couple of other medications (Anastrozole, Exemestane) my my side effects were even worse, so I ended up back on the Tamoxifen and had resigned myself to feeling miserable for the duration of the 5+ years I would need to be on the medication.
That resignation turned me into a lump. If I walked for too long, my feet would get so sore I would be hobbling everywhere. My gait changed since I couldn't walk normal and that started causing all sorts of other troubles — back aches, losing strength and flexibility, more depression, and a huge increase in my pain levels. Every morning I woke up in pain from the top of my head to the bottom of my feet. I could not remember what it felt like to not hurt, and it made me angry and jealous of people who could be "normal". I slipped into a hole of self-pity and I became bitter and unhappy. And I didn't do anything to make it better. I mean, I did try topical creams, oral medications, CBDs, and even physical therapy, but I had gotten too far and all I knew how to say to myself was "I will never be without pain again" and that began to break me.
Fast forward to last December when Gerry and I moved to Minnesota. The Twin Cities. Initially I was super excited about it. There was going to be so much more to do, so much more to experience, and better access to doctors and treatments that would help heal me. That is what I told myself, at least. We moved in the dead of winter, though. In fact, we arrived to our new home (a tiny 2-bedroom apartment on the 2nd floor of a 3-floor building) the same day that 20 inches of snow fell. It was just Gerry and I — we did not hire movers — so it was just the two of us unloading all of our belongings from the U-Haul 25-feet from the front door, through an 8inch wide path in the snow, up a flight of stairs and another 30-feet down the hall. It took us about 4 hours to get everything unloaded, and by the end of that day my entire body was on fire. Every step was like stepping on razor sharp shards of glass while being simultaneously being slammed on the tops of my feet with a hammer. All my bones and muscles screamed and ached, my feet and toes felt on fire from the neuropathy being aggravated and I felt miserable.
It took me a good couple weeks to get to feeling back to my new normal, which was still painful but not to the point where I wanted to step in front of a fast moving truck. Experiencing that much intense pain, and dealing with the aftermath so long after we arrived broke me even more. I fell into a deep depression, I swung back and forth between being angry and sad, multiple times a day. I wasn't working right away, so I spent my days trapped inside this tiny box of an apartment alone. Well, I had the cats, but Gerry's new position took him on the road, so he was gone that Monday after we arrived. After forcing myself to make the apartment livable, I spent my days sitting on my ass and feeling homesick.
Christmas was miserable. I had an emotional breakdown and spent most of the day quietly crying and being angry. Gerry was home at this point, so he was the lucky recipient of all of the feelings I was having. What I didn't realize then, and I do now though, was that the majority of what I was experiencing was related to how much pain I was in. I could not get that back under control, so I couldn't control anything. I was at the mercy of this invisible invader in my body that was slowly taking me down and destroying as much of me as it could.
I did eventually find a job, but due to the increase in my pain levels and how sad and homesick, and lonely and isolated I was, I couldn't allow myself to really establish any real connection with anyone and I found myself hating it. Well, I liked the type of work I was doing, but I hated the atmosphere and had some interpersonal conflicts with one of my co-workers, which only added to everything else.
The remainder of the winter and into spring was long, dark, cold and miserable. Minnesota is freaking ridiculous when it comes to cold weather. The 20inches of snow that greeted us when we arrived was not normal, according to the locals. But the consistent cold days with temps in the -30s for days on end, with winds up to 40 miles an hour making the windchill a -55 *is* normal, and I HATED IT. Anytime someone from back home would ask me how things in MN were going, I couldn't find anything good to say. It didn't help that I was alone a lot since Gerry was on the road, and since I wasn't familiar with the area, when I wasn't working, I stayed home. I didn't do a damn thing besides eat, feel sad and angry, battle with chronic pain, work, come home, and sit, battle with chronic pain, eat. feel sad angry, stay up too late, repeat, repeat, repeat.
The weather got better, though, and of course the warmer temps and the longer days started to help improve my mood. Spring blossomed and I picked up some tomato and pepper plants to grow on our balcony and tried to feel better. I had also started seeing a therapist via telehealth, and it was nice to have someone to unload on. Gerry isn't someone I do that with — though I wish I could — but I get angry too easily with him for reasons I can't always explain. At any rate I started feeling slightly better about things, but I was still dealing with a lot of pain. My left foot had gotten so bad that I dreaded getting up from my recliner to walk to the bathroom. I was still physically stick, despite feeling like mentally I was getting myself pulled out of the muck.
By June, I was just too tired of dealing with the pain, and felt that I needed to do something. The quality of my life was suffering more than ever and was literally sitting on my ass for as many hours in a day I could get away with. Doing that meant I could avoid as much pain as possible. But I knew that if I kept in that direction, I was going to do a lot more damage to myself in the long term. I kept having visions of myself at 50 years old (only a couple years away) and needing a cane or walker to get around. Or worse yet, a wheelchair. I was getting more and more weak, I felt more and more tired and lacked energy to do anything. I wasn't living, but just existing. And then I began to recognize the return of the dark and defeating thoughts that made me start to think about how nice it would be to just not have to feel this any more and how I just wished I wouldn't wake up in the morning. This is when I made the decision to stop taking the Tamoxifen. I couldn't do anything about the arthritis, outside of surgery. The damage there was done, but I could stop taking the medication that provided the greatest contribution to how I was feeling.
June 17th was the last day I took Tamoxifen. I knew that in making this decision, I would need to be more proactive in other ways to reduce my chances of having a breast cancer recurrence, so I contacted my oncologist and asked for a referral for cancer rehab therapy to help with restoring my strength and stamina. I also scheduled a steroid injection for my left foot, hoping I'd get a few pain-free months where I could concentrate on working on my health. Women who are obese when they are first diagnosed with cancer have a higher chance of recurrence, so my decision was a gamble. I could be sentencing myself to more struggle in the future, but I had to consider how my present was. What really tipped me over the edge in making that decision was a moment I had about the difference between suicide and assisted suicide. In some parts of the country, and world, a person who has been diagnosed with a chronic terminal illness can make the choice to end their own lives in order to not suffer more than they have to. I was having a bad pain day and I was feeling at my wits end. I had been crying for two days, off and on, I wasn't sleeping well, I was angry and sad and I just didn't want to be alive anymore. Plain and simple. Had I had the means, I don't know that I wouldn't have tried something.
I remember a light bulb of sorts going off and suddenly having the thought "what difference is there really between someone who suffers physical pain from a terminal illness and someone who suffers mental pain from a mental illness or chronic pain from a non-terminal illness". At that moment, I didn't feel there was a difference and I thought to myself "If I don't want to feel this way anymore, I have the RIGHT to stop it any way I choose." You would think with those kind of thoughts, I would have started "planning" something, and I did. But what I started planning was a way to get myself out of where was. I told myself that if I wanted to end things, I could. I had the right to choose how I wanted to live in this world, or how I chose to exit it. But I wasn't ready to exit it, so my only other option was to make the changes needed to live the way I wanted to.
To be continued....
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