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Two and a Half Years After Chemo, I Take Inventory of My Healing

Part of my goal with ABSOT is to create a resource for the newly diagnosed to understand what lies on the road ahead. I detailed nearly every moment of my chemotherapy treatments and began writing a series of posts of how recovery was going after finishing chemo. I wrote these posts at the two monthsfive months, and twelve months post-chemo marks, respectively. However, after the last one, I really dropped the ball on continuing the series.

But today marks thirty months post chemo, or two and a half years for people who don’t count anything over a year in months. Looking at you, new moms who insist on telling me your kid is 16 months, 3 weeks, 2 days, and 6 hours old. Your kid is one. Move on.

But I digress. True to the fashion of the other “Months Later” pieces, I’ll give an update on how my physical and mental recovery, after facing chemo, has been going since the last update.

Physical healing remains strong, with a few slight problems.

 

In the “Twelve Months Later” piece, I mentioned that I wasn’t feeling any nausea or fatigue anymore. This remains true today. I haven’t vomited at all since the ‘BRATman Begins’saga and I would even venture to say I’m in the best shape of my life.

I also mentioned in that post that my hair fully grew back and I was contemplating a new style. I’ve finally decided on a new one… a year and a half later. Stay tuned! Another holdover from that same post is my disdain for plain water. While I don’t hate it anymore, I still prefer it with lemon – or even a lime if I’m feeling wild.

However, a number of new strange symptoms have cropped up in the past six months or so. Mainly, I’ve been experiencing excessive sweating (even in cool temperatures) and had some weird pains here and there. So far, blood work has ruled out thyroid or hormonal issues, and I’ve had an ultrasound that I am still waiting on the results (as of this publishing).

Overall, aside from these new symptoms, I would be confident in saying that my physical health is 99.9999% back to normal – a full 0.0009% higher than in January 2018.

Mental health continues to ebb and flow.

I still have some slight difficulties with memory and attention, which I credit to chemo brain. Over the weekend, I participated in an online study that confirmed my short term memory and concentration are below average and my spatial awareness and ability to split my attention are right on the money. Interestingly, my ability to quickly scan and process information is actually above average. However, I don’t have a baseline to draw from originally, so who knows if that’s actually due to chemo brain, “old age,” or undiagnosed ADHD?

Worrying about scans is a constant, too

Probably the single biggest difference between January 2018 and now is mental health fluctuations. Back then, after realizing how I was experiencing depression, I had just started on antidepressants. At first, they didn’t seem to help too much. Finally the correct dosage kicked in and has been helpful in keeping me balanced since then.

Recently, I’ve noticed that I’ve been struggling a bit more than usual with my mental health, so I’ve begun seeing a therapist who I’ve seemed to connect well with. I’ve gone twice thus far, and we’re working on a roadmap to help me navigate the sea that is cancer survivorship and life. In a few months, I’ll probably write a more detailed post about therapy and how it’s been helping.

All in all, my mental health is doing much better than it was right after facing cancer, but it’s always in the forefront of my mind.

I’ve said it once, and I’ll say it again: Being a cancer survivor is complicated.

I firmly believe in the value of sharing my full story in hopes of letting others know that it’s ok to not be ok. While this piece was largely the same as the “Twelve Months Later” piece, it’s important to share these moments so others know what to expect on the road ahead.

It’s also critical to note that my left testicle has still not grown back, even after all this time.

Though I still hold out hope, the local hospital has told me that, “infusing your DNA with that of a salamander will not help you to spontaneously regrow a testicle and for the last time, please stop calling us unless you have a true medical emergency.”

A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version

 

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Why I Became a Patient Advocate

Last year, I got diagnosed with breast cancer. My life fell apart. I lost my health, my energy, my job, my enthusiasm, my sleep, my appetite. My brain got sluggish. I was lost. Lethargic. Uninspired.

Then I started treatment. It was brutal. I shrank my sense of time to smaller units. I wasn’t thinking about what I would do after cancer. Or even making plans for the summer. I was just focused on making it to the end of the day. One day at a time. From my bed to the hospital. From the hospital to my bed. And again the next day.

Then, something happened. My body was still beaten up and shivering, but I started to see the treatment through new eyes. Amidst the misery, a new sense of purpose started to awaken in me. I realized that being a cancer patient also gave me an opportunity to be a proximate witness of cancer. I started to see the stress and trauma of treatment not as an inevitable dread, but as a design flaw that could be improved. I started to see that my pain could be turned into something positive. That I could leverage my first-hand experience of cancer, professional skills, and moment-to-moment awareness of my human experience to help oncology providers design a better cancer experience for other cancer patients. That gave me hope.

I decided to use my voice to give voice to the million voiceless cancer patients suffering in silence. I wrote a blog post about my cancer radiation experience and the distressing impact of stressful medical processes. A friend suggested I submit it to a medical journal to broaden its reach. I made improvements to turn it into an academic paper, and it was accepted for publication in the Journal of Patient Experience: Leotin, S. (2019). An Insider View of the Cancer Radiation Experience Through the Eyes of a Cancer Patient. This, in turn, opened doors to new conversations with medical providers. I was met by resistance by some and gratitude by others. I joined the board of the Stanford Cancer Center Patient and Family Advisory Council. I received invitations to speak at medical conferences.

My cancer experience made me aware of a gap in understanding the needs of cancer patients I had not seen before, and the unintended suffering it adds to the cancer journey. Cancer is a black box few people understand unless they’ve had cancer themselves. We need to bring to light the unseen needs of cancer patients to empower those who care to address them. Through writing, speaking, and the use of new technologies, my objective is to reveal the human experience of cancer and help improve the patient experience for all cancer patients.

I am thrilled to be joining the Lyfebulb community as Cancer Ambassador and look forward to meeting many of you, online and offline.

This article was originally published on my blog at sylvieleotin.com.

Twitter: @sleotin

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