What Does It Feel Like to Finish Active Treatment & Cancer Update
The first seven days after finishing treatment was arguably as hard as the diagnostic process. Interestingly, after re-reading the blog post that I wrote the day I received my last round, I can’t believe how much my feelings changed in less than twelve hours after completing treatment.
Thursday, October 14, I received my last round of Herceptin. It was a crap show. A thirty-minute dose of Herceptin, blood draw, and meeting with my Oncologist took over three hours. I think my response to the last round of treatment was heavily impacted on how stressful the last round was for me. I just wanted to get out of there. Instead, I had to spend over forty-five minutes waiting to see my Oncologist, followed by another two hours of intermittent waiting between blood draws and Herceptin.
The following morning, reality hit me. I entered the “existential crisis” phase of post-treatment, heavily impacted by the fact that I made a life-altering career change right before my diagnosis, and hadn’t been able to process that change since I made it due to my diagnosis taking precedence. I made the not-so-smart decision to look at my finances, really take in what I make versus what my husband makes, and spent most of Saturday wanting to drop out of the MFA program and go back to teaching full time. What was I thinking? I had a lucrative career, life insurance, benefits, a pension, and stability. I gave all of that up for a future that is completely uncertain and definitely doesn’t have a pension. It was terrifying.
By Sunday, I was back to feeling less anxious about my drastic career change. Instead, I traded that antecedent for a new one: Tamoxifen. I bit the bullet on Friday, October 15, and started taking Tamoxifen. I didn’t feel any different, just anxious. What if it was going to give me other cancer? What if it made me have terrible mood swings or depression? What if?
At my insistence, my Oncologist made an appointment for me to get a bone density scan, to get a baseline, since Tamoxifen can cause bone loss in premenopausal women. On Tuesday, I went in for the procedure. It was the first time in over a year that I didn’t have to get undressed for a diagnostic test. You just have to lay on this table, fully clothed, while this machine scans your bones. I didn’t think anything of it. I thought that I would be fine. I hike all of the time. I have a normal bone structure, I’m not frail by any means. Well, guess what? I have Osteopenia. I got the results Tuesday night in my e-chart. Osteopenia in my lower back, but my femur was fine.
It was the catalyst for the multi-day meltdown that followed. It had been building all day Monday and getting these results Tuesday night was the final straw. I started spiraling and perseverating about Tamoxifen. This pill was going to give me uterine cancer. I am trading one kind of cancer for another one. But if I didn’t take it, then I would be at risk for recurrence of breast cancer again. I wouldn’t be safe if I stopped taking it. This pill was at least something. It represents taking action of some kind. It means that I am still in treatment. That I am still safe.
All day Wednesday and Thursday I was a mess. I couldn’t think about anything except Tamoxifen and that there was no right answer. There was no good choice. I went to class, I went to work, and I went through the motions, but all I was thinking about was I’m poisoning myself if I take it, or I’m going to get cancer again if I don’t take it. I texted my friends, I called my mom, and I read a ton of medical articles about the risks of Tamoxifen, recurrence rates of different kinds of breast cancer, and what the likelihood was of recurrence. I scared the crap out of myself for forty-eight hours straight while my classmates debated trivialities. Why can’t I just be like them? What does it feel like to be ignorant to life or death? What does it feel like to be happy?
It was horrible. I decided Tuesday that I wasn’t taking Tamoxifen anymore. There had to be another option. I looked for another type of hormone therapy, one that didn’t cause uterine cancer, but all of the other options sucked. Everything sucks in cancer treatment. I took birth control for over fifteen years without thinking about the ramifications, and then I got breast cancer that was strongly positive for estrogen and progesterone. My birth control was feeding the cancer. I caused my cancer. It’s my fault.
Thursday, having not taken Tamoxifen the day prior, I was petrified all day. What if the cancer comes back? What if it comes back now because I’m not taking anything? This isn’t safe. I’m not safe. How can all of these people just go about their lives like everything is fine when something so terrible exists? What does it feel like to not be scared? To not be worried? Wednesday and Thursday were the worst forty-eight hours that I’ve had since last fall.
Not taking Tamoxifen was scarier than taking it. So Thursday night, after taking twenty-four hours off, I took my pill again. I felt better. I felt safer. I felt glad. I was safe if I took this pill. Even if it comes with secondary cancer risks, it’s better than taking nothing. It’s better than being out there in the world with no treatment. I genuinely don’t envy people who are only HER2+ or triple negative. This pill represents doing something. Taking action. Being active in treatment. I have spent the last nine months kicking against the goads and wanting nothing more than to not have to take this pill. Now, I never want to not take it. In looking at recurrence rates, there is a spike in recurrence at the ten year mark for people with ER/PR positive breast cancer. This is when most women go off hormone therapy. It means that even in ten years, I’m still not out of the woods. It means there is no out of the woods. There is no out of the woods.
The last week and a half has been hard. “Ending” active treatment is hard. It’s like all of the safety nets are removed. You have been followed so closely for over a year, have a medical team of over a dozen people checking in on you, making sure you’re safe, taking action, doing something to make sure you are not going to get cancer again, and then that ends. You go from seeing your team every few weeks, to every few months, to every six months, to once a year. The worst part, though, is they take away your medicine. The treatment is the medicine. It is keeping you safe, even though it is making you sick. It is slow poison and it is both killing you and keeping you alive.
Cancer is a nightmare that I won’t wake up from. But it is my nightmare, and if I have to live in it then I’m going to learn to embrace it. The blackest of nights are when the stars shine the brightest. If I can’t escape the nightmare, then I will make it the most beautiful, colorful, vibrant, uplifting, inspiring, happy nightmare I can. If you can’t escape the dark, then embrace the darkness and learn to love those little twinkling lights.
Though my soul may set in darkness, it will rise in perfect light;
I have loved the stars too fondly to be fearful of the night.
Sarah Williams
