Just when you think things are going downhill, and there you go – your world takes a different path and surprises you.
After some time away from the blog dealing with the downside of survivorship, I’m so excited about life at the moment. It’s an amazing feeling; an exhilarating sense of purpose and that life is going well. I love it with a passion! It certainly opens my eyes to how I was really feeling the last two years without really knowing that I was feeling that way. That’s an odd statement, I know.
Those who have or had chronic illnesses will know that sometimes there is no choice when it comes to medicating your body to fight disease. The collateral damage your body and mind incurs is just a fact of life, and you live with it, especially when the alternative is, almost certainly, death. But, sometimes you are fortunate enough to have a choice. I know – it’s somewhat of an oxymoron calling cancer fortunate, right? Stay with me, I’ll explain.
Last December I stopped taking all of my cancer medication, after over four years on the treatment plan. It was a surprisingly easy decision to make!
If you have had an estrogen receptor positive breast cancer and have taken aromatase inhibitors, you will most likely understand. It’s not a decision I would advise anyone to take without considered medical advice and a lot of research, with second and third opinions mixed into the fray. It’s an intensely personal choice.
By doing this I knew I was increasing my risk of recurrence, but the alternative – continuing with the treatment – just wasn’t an option anymore.
I made my decision because life was just not worth living while I was on the meds. From not being able to sleep – ever – to intense hot flashes 30-40 times a day, debilitating night sweats, excruciating joint pain, bone density loss, and the list continues. I lived in dread of waking up to pain every day. I had to plan my days with the precision of military exercises…or nothing would get done. I started this blog and tried to keep it up, even while feeling less positive than I should have been. Exuding positivity for others is hard when all you want to do is bury your head under a pillow.
I began researching what would happen if I stopped the meds, and what else I could do to reduce my risk of a recurrence. I spent time with specialists and surgeons, discussing extreme surgeries, my desperation to find a solution manifesting when I told my breast surgeon to just “cut them off,” and my gynecologist to “scoop it all out!” I was frantically hoping that by mutilating every feminine part of my body I could sleep more than 10 minutes at a time and walk down some stairs without wanting to rip my legs off. Thankfully, none of the surgeons were prepared to go to drastic lengths when there was no evidence to suggest I would reduce my risk in any way worthwhile by doing it.
That’s what aromatase inhibitors did to my mind and body. Some people suffer no or little collateral damage. The benefits of the drugs for them do far outweigh the negative impacts. And for others, like me, we get the worst of it and the benefits are hard to see. Especially when the treatment plan can last years.
Aromatase inhibitors are used to reduce estrogen production, preventing estrogen from feeding receptors in cancer cells, which in turn helps those cancer cells to grow further. So keeping low estrogen levels in the body is a large part of the treatment plan.
Unfortunately, low estrogen levels also means that the body begins to react with hot flashes, night sweats, bone loss, and dry joints. ER positive breast cancer patients cannot use traditional remedies used for menopausal women since these remedies contain estrogen properties. As such, there are no drugs that exist solely to treat the side effects of aromatase inhibitors. That is, where they have been specifically designed to reduce the impact of only these drugs. Not a single one. Instead, there is a reliance to use other drugs that are formulated to treat other conditions. That's common, it happens all the time. In some cases, these may successfully treat one side effect of the aromatase inhibitors.
For some patients, like me, antidepressants like venlafaxine are prescribed in low doses to treat the hot flashes. Piles of supplements including calcium, vitamin D, curcumin (turmeric), green tea extract, and cinnamon were also recommended to help bone health. Oh, and if that wasn't enough, add a few protein shots in the knees to help the joint pain and dry cartilage in my kneecaps.
The venlafaxine stopped working about a year into taking it. The hot flashes intensified and were worse than before. I would take extra changes of clothes to work and changed my sheets nightly. I had no sleep and my mind was going crazy. Alternatives were explored, and pregabalin was prescribed, also in low doses. Unfortunately, the side effects of this drug manifested early. Bring on the mood swings, depression, weight gain, and – I dread writing this – suicidal thoughts. I didn’t take pregabalin for long, only for a few weeks, and thankfully I knew what was happening to me was as a result of the meds.
There are so many studies and new clinical trials for active cancer patients. And there should be. Finding a cure, finding a way to stop this bastard from impacting the lives of millions is a priority. But for people like me, who no longer have cancer but must continue preventative treatment, we aren’t the priority anymore. We are at the mercy of other drugs that were not designed for our conditions, and we would probably never have to take them under normal circumstances.
Waking up in the morning and thinking how wonderful it would be to just not be here anymore was the turning point for me. I told my doctors no more meds, no more consultations, no more anything. After nearly five years I was cooked and done. I would do my annual screening, and I would regularly check for lumps. But I was done with living with the constant presence of doctors and medication in my life. It was a vicious cycle that I could not get out of until I took the step to make the call myself. Because no one would make it for me.
It wasn’t easy, but I did it. Getting my mobility and health back was hard to do, especially when I could not turn off my fears of recurrence. The night sweats and hot flashes took about six weeks to fully disappear, but I relished the first night I slept all the way through for a straight eight hours. It was the best night’s sleep I have ever had!
I took three months off work to rest and focus on getting healthy again. I found a great psychologist to help me deal with my anxiety about getting cancer again now that I had stopped treatment. And I started working with the integrative medicine team at my hospital to focus on my physical health.
Three months later, after many sessions with an exercise guru who specialized in breast cancer, and with a physical therapist who worked the kinks out of my joints, I could walk up to 10 minutes at a time and climb stairs without pain. I was building muscle around my core, and I was feeling better than before I was first diagnosed! I began to sleep solidly through the night, every night.
And now, the next phase of my life awaits me. I left my job and am moving to a less stressful place where placing my health first is easy. I’m so excited to get back to the positive and adventurous person I was before I was diagnosed. I’m making exciting but risky choices and I’m OK with that.
What does this mean for those of you reading this? It’s never too late to try a different path in life, to fight back when you know something isn’t right for you. Oftentimes, you won’t know that something isn’t right until you’ve been in the middle of it for a while.
It’s never too late to push the professionals to hear you when you say, “enough is enough” or when you want to try different options, or explore new or radical treatment. You can’t get back the years lost fighting, but you can make the future years worthwhile and the best they can be. We’re none of us getting out alive, so why let something like cancer be the decider of how we go?
Happiness and cancer typically do not belong in the same sentence or even the same hemisphere. But, they can coexist if you make the choices that give you the freedom to be yourself, for you and your loved ones.
The purpose of this blog remains the same as when I first started it almost a year ago: a place for those still going through the crap that is cancer to know that they aren’t alone. Living with the damage cancer causes need not be bigger than it is. It wins when we make more of it than it deserves. Or, in my case, when you almost stop being you…