The Breast Cancer Diaries, vol. 2, issue 22

Cancerversary, Back to Work on Campus, and Personal Victories

It's now over a year since my diagnosis (Sept. 2021). I had a mammogram, which led to another mammogram and ultrasound, then a biopsy, then a breast surgeon, then a uterine biopsy, then a lumpectomy, then radiation, then some really bad burns and treatment, then a new dermatologist, then Tamoxifen, then terrible non-stop migraines and hot flashes, then no Tamoxifen, then lymphedema therapy, then an oophorectomy, then menopause, then Letrozole, then ALL the painful side effects, then no Letrozole, then a trip to the emergency room, then damage to my right hand, then another mammogram, then loads of tests. And, here we are. 

Of course, from reading all of these diary entries (and if you're a FB friend, you also get the Quickies) you know there has been much more to it than that, but if you wanted a cut and dried summary, that's the driest one I can provide. It's hard to believe a year has passed already, although during it, I was aware that my life had become a fairly nuts and painful runaway train. At least for now, life is greatly improved. More on that below. 

Back to the Archives and Special Collections

Beginning in September, I returned to campus on Mondays and Wednesdays from 10-2 and worked the other weekdays at home. It was a good way to ease my transition back to in-person work. I've been working from home all this time, but I missed being with the materials and colleagues on site. Coming back in person was exciting, anxiety-producing, and exhausting. Also, a big learning experience.

I learned that being there only 4 hours (plus the 2 hours of commuting time) was inefficient. Also, with that schedule, I didn't get a lunch, which was difficult because I need to eat nutritiously more frequently for better healing. So, starting in October, I split my hours between three days in the office Monday, Wednesday, and Friday. But that will change in December.

A couple of weeks ago, the Grants folks, who had helped me write a big grant application (also with help from the Dean of the Library), let me know that we did, in fact, land this whopper of a grant. If you're interested, a summary is here: https://www.imls.gov/grants/awarded/st-252518-oms-22. And, now I'm on another runaway train, which is trying to manage the big project that is this grant. It is essentially a three-part series of projects, some of which overlap. 

More importantly, I'm figuring out what I need to manage the stress of it (MEDITATION, very good diet, and exercise), as well as the fatigue that comes with radiation -- the gift that keeps on giving. Lymphedema causes fatigue, too, but not anywhere near as rough as the radiation. Having the days off in between is incredibly helpful. But, come December 1, I will gain another 9 hours, thanks to the grantors. My plan is to serve those additional hours at home on Thursdays. 

Overall, I'm glad to be back. However, it is unnerving that I am in a teeny minority of people who still wear masks. I wear mine all day in the Archives because there are study rooms adjacent to the Archives space, and when folks are wearing fragrance, I can smell it. So, shared air. I know some folks think that I may be overly cautious, and that's OK. I'm good with that. A secondary benefit is that my allergies are much improved by being masked in the Archives. 

 

Since my in-person return (and prior to it, but much more so now), I have been open about the breast cancer, as well as the lymphedema. Because I wear an arm compression sleeve, I am visible in a different kind of way than just being the archivist with the blue or purple crew cut. I take it as an opportunity to raise awareness of lymphedema as a secondary disease from breast cancer treatment. 

Personal Victories

Speaking of lymphedema, I went to see Lisa the bra fitter this week to try a smaller compression bra. Miracle of miracles, I dropped an entire size! She was very happy for me and said that she could tell right away that I had lost some weight. Don't get me wrong, I still carry significantly more me than I did last year, but I can now see results from the exercise and better dietary choices. 

 

Importantly, the inframammary fold burns have improved so that I use compression every day for most of the day. I know. That is big news, too. For the last month or so, I stopped using all the ointments and switched to baby powder to keep it dry and chafe free under my left breast. It took a while to be able to do so. Previously, I tried powder, and the burns just flared right back up. So far, I am cautiously optimistic, and Dr. Singh was happily surprised. The skin remains very discolored, which he said would take a year or more to clear up. But, for the past few weeks, I have felt much better in the burn area. It is such a relief. It also makes me feel hopeful. 

Back to the bras, this morning, I fit into an athletic bra that I couldn't fasten in more than a year. I wore it on a walk. It was a tight fit, but as you can guess, I'm still happy about it. 

Other Stuff

I still experience pain in my right hand. Physical therapy helped, but then Cigna denied my continuing the therapy, which isn't helpful at all. The physical therapist is trying to sort it out, but in the meantime, it hurts and feels tight all the time.

 

I am a member of a few breast cancer and lymphedema (and breast cancer with lymphedema) Facebook groups. Like all of the members, I have a cancer story to tell with all its pain, ugliness, and moments of triumph, however small.

 

It amazes me that I'm already to the point where time has tempered some of the experience. Which doesn't mean that my journey with BC is over. Far from it. I'll be monitored with blood tests every 6 months; mammograms on my left breast every 6 months and both annually; and every time I go to any kind of doctor, there are many more tests just because I have cancer and had a positive lymph node. There's also the daily wearing of compression garments, which I'll do for the rest of my life. 

 

By the way, Cigna isn't paying for the compression bras despite having said they would. The ones I wear are $75 a pop. Thankfully, they pay for the arm sleeves, which are custom and cost a lot more. There's a bill up before Congress to get Medicare to pay for them. Once they do, we all get a break. 

 

All of these medical garments I wear have a life of about 6 months. The first two arm sleeves have already stretched in length despite my handwashing and babying all of the compression gear. Since I've changed to a smaller compression bra, I'll now need to replace the two I've been using (which are now 6 months old). So it goes. Another line in the budget. 

Lastly, I have been living my life in CAPITAL LETTERS as I said I would. I took a road trip to see my very dear friend Jane in Erie, PA, and this time next week, I will be on another adventure with another dear friend Joy. I travel a bit differently than I have in the past. Now I pack baggies of turkey tail mushroom powder to eat in my morning oatmeal. I also bring my lymphedema and post-surgical exercise handouts with me.

 

As ever, I am grateful for your continued reading of these diary entries. Thanks especially to those who have sent love, prayers, hugs, very silly gifts, very timely gifts, and shared their own experience.

 

Don't forget to get your screenings. Early detection is key!