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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

 

Want to work with Justin? Click here to learn more.

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

AZ Diabetes Linkup: On Uniting Community Without Reinventing the Wheel

In case you weren’t aware, AstraZeneca has joined the ranks of Pharma companies hosting forums for patient leaders, bringing in about a dozen advocates from the Diabetes Online Community (DOC) recently for their second annual “Diabetes Linkup” event outside Washington, D.C. The conversation this year focused mostly on how we can all help to better include and elevate the type 2 voice in community and advocacy efforts.
While that certainly came up last year (DiabetesMine attended both years), this year the whole event was designed around T2D and most of the participating advocates were either living with T2 themselves or involved in T2-related initiatives. In fact, I was one of only two in the group living with type 1 (the other being Anna Norton, who heads up DiabetesSisters).
The others in attendance were: Dr. Phyllisa “Dr. P” Smith Deroze of Diagnosed Not Defeated; Bill Gould of I Run Diabetes; Shelby Kinnaird of Diabetic Foodie; Jill Knapp of Get Up and Get Moving; Gene Kunde of Diabetes Hands Foundation; Sarah Odeh of the diaTribe Foundation; Michele Tuck-Ponder of Diabetes While Black; and Kathleen Weaver of Living with Diabetes and Lapband (plus her D-alert beagle named Dulce!).


A few other folks from the DOC were invited but unable to make it, so the group was a bit smaller than planned. On one hand, it made my heart happy to see so many new faces in the room who are getting involved. Expanding our tribe is hugely important! But at the same time, I did also feel there was a lack of "institutional knowledge" missing from the conversation, and as a result, at times I felt a sense of deja vu in hearing the same discussions that have played out so many times over the years already. At times, it felt like the group was almost "recreating the wheel" on some of the DOC's past work.
But hey, fresh eyes and POVs never hurt.
Plus there's the factor that as one of the few T1Ds in attendance, I felt a bit out of my depth at times too because I simply don't know what it feels like to live with T2. Even though we share so much in common, the fact is I haven't walked in those T2D shoes, especially when it comes to experiencing stigma and searching for but not finding that "me too" connection in the online community.
As such, I felt it was largely my place to listen and connect the dots as much as possible.
Here's a quick run-through of how the day-long event went down (you can also see some of the live-tweeting that was taking place via hashtag #DiabetesLinkup, and check out this recap post by AstraZeneca itself):
AstraZeneca’s Lily Cappelletti, senior manager of
corporate responsibility and external affairs, welcomed the DOC
group to the 2nd #DiabetesLinkup.
 

Burgeoning T2D Resources

 
We started with a recap of what came from the 2015 Diabetes Linkup. AstraZeneca said it made two specific moves as a direct result of that gathering:
  • On It
    Movement
    (with Dr. Phil):
    This initiative was launched
    in early 2016, as a way to help PWDs take an active role in
    tackling their T2 diabetes and dealing with the emotional and
    psychosocial aspects that come along with it. Teaming up with Dr.
    Phil (for
    better or worse?
    ) on the heels of hearing our initial D-Linkup
    group talk about sharing personal stories, AZ created this whole
    campaign around “6 Rules to Get On It.
 
  • Everyday
    Steps
    :
    Following the 2015 event, AZ also partnered
    with Diabetes Hands Foundation to create a program designed to help
    those with T2D start and keep up a walking routine, “one step at a
    time.” The campaign website contains a number of resources and
    guide materials.

Of course, when visiting the sites for both of these programs, you can tell immediately they're Pharma-affiliated as boxes with drug warnings and labeling notices pop up on the screen. So hopefully any T2 peeps tuning to these resources aren't turned off by the feel of the site or all that medication-specific info featured.
During this most recent event, AZ folks did talk about some of their diabetes drugs and pipeline, but they spent more time focusing on various programs and resources they offer to help people with T2D. For example, this year they again gave an update on Fit2Me, their free online program for T2 support that includes information on co-morbidity issues such as cardiovascular health, blood pressure, and so on.

It was also good to hear AZ talk about their advocacy efforts, working with others throughout the industry to make prediabetes and T2 more of an urgent priority -- especially when it comes to government funding and R&D.
There was also a panel discussion in which a trio of awesome advocates -- Sarah from diaTribe, Gene from DHF, and Anna from D-Sisters -- talked about their individual groups and efforts and welcomed questions and conversation.
That all pretty much took us to the heart of the conversation about the gaps that exist within our DOC today.

Welcoming the #T2DOC


As noted, this year's big focus was an echoing of the conversation that's been going on for years now: How do we raise the level of dialogue for those with T2D in the DOC?
It's a proverbial question that no one has found the answer to.
Why is the DOC so heavily weighed in favor of T1D, and is that why those with T2 don't always feel as included? What about the rift...
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