Tuesday, April 19, 2022

89 - 16 Years Later - Graduation with a Doctorate after Recurrence

It is 2022. In about a month, I'm going to walk the stage to accept my diploma from the Doctor of Business Administration (DBA) program at Wilmington University. (!!!)

I graduated from the master's program in predictive analytics from Northwestern University in 2016. I figured that since I had the rest of my life ahead of me, I might as well get the education I needed to do the kind of work that I wanted.

I had a second primary of breast cancer in 2020. This time it was a completely different pathology and in the opposite breast as the first time. Instead of Stage II triple negative invasive ductal carcinoma (my diagnosis in 2006). In 2020 it was Stage 0 PR/ER+ DCIS (ductal carcinoma in situ, meaning the cancer cells haven't left the duct yet to form a tumor).

That meant the cancer was caught super early. I didn't need chemo. I endured a lumpectomy and radiation. I got might tired of hearing medical people refer to that breast cancer as pre-cancer. You know what? If the cells under the microscope are breast cancer (which they are with DCIS), that is cancer to me!

Now that I'm on the other side of that journey, I'm starting to see articles refer to DCIS as "pre-invasive breast cancer." I like that modification to the name, because DCIS is pre-invasive since it hasn't formed a tumor yet. Hearing my new breast surgeon refer to DCIS as "pre-cancer" made me wonder if I was some kind of poser when I returned to the Pink Ribbon Cowgirls group for support.

Actually, that first group meeting was kind of funny to me. Having attended the very first Pink Ribbon Cowgirls get together and then attending again over a decade later as a newly diagnosed person, I was simultaneously the oldest and the newest breast cancer patient in the Zoom meeting that night.

Zoom changed things. We moved out of Austin, Texas to a different state a few years back, but my local area didn't have anything quite like the Pink Ribbon Cowgirls. Zoom allowed me to participate whereas in-person sessions would have been impossible.

Having cancer in 2020 meant I had cancer during the COVID-19 shutdowns.

Talk about an isolating experience! I hated that my husband was not allowed to accompany me to appointments with the oncologist, yet he could come with me to the breast surgeon. He wasn't allowed in the room with me while I waited to be rolled back to surgery. I made do with texting him instead. He wasn't allowed in the building when I went for my daily radiation therapy treatments. It sucked.

However, I learned a few lessons the first time around and I took those lessons with me the second time.

I stood up for myself when I felt like the situation needed it (and I had the energy). For example, my DCIS was caught with an annual mammogram, so I had to come back for a biopsy. The first time around I had surgery to remove what we thought was a benign mass caused by pregnancy hormones and the surgeon performed a surprise lumpectomy while I was sedated. The second time I ended up going the more traditional route with discovery via imaging and confirmation via a biopsy.

I told the doctor performing the biopsy that I wanted the news (cancer or not cancer) myself, because I had already seen my oncologist for that year's annual appointment. Traditionally, the biopsy results get delivered to the oncologist and the oncologist delivers the news. Despite the doctor's reassurances that he would call me with results by either Friday or Monday, I heard nothing. I agonized over it all weekend, and got really angry later when I read the pathology report and learned that cancer was confirmed by end of day Friday. I tracked the doctor down the next Tuesday by calling the kind assistant who had given me her direct line. She had the doctor call me back, and he seemed totally surprised that I wanted him to tell me directly. It was as though I had said nothing 5 days before just before the biopsy started.

Some people find it hard to break their normal routine.

I find it unnecessary to return to medical providers who won't honor reasonable patient requests that have been explained more than once.

The hospital with the excellent breast center and the radiologist who didn't listen to me lost my business as a patient for the MRI-based biopsy that had to be performed a few weeks later, the eventual lumpectomy, and all the return visits for follow-up imaging in the form of mammograms and breast MRIs.

Some situations deserve unforgiveness, I think.

Also, when the radiation oncology nurse gave me advice that was outdated about skin care and the use of deodorant during radiation, I complained to the radiation oncologist. The doctor confirmed that my information was correct and the nurse was wrong. However, she was not part of his chain of command at the cancer center. That meant office politics would halt any efforts I made through the doctor to get their new patient packets updated.

Do you see where this is going? I didn't leave the cancer center. I really like that cancer center.

Instead, I used my student library account as a grad student and researched peer reviewed articles about the topics of whether it is safe or hazardous to use skin care products containing antioxidants and whether it's safe to use deodorant during radiation. I found the research to back me up, and I compiled a reference list of medical articles that I attached to the end of my email to the cancer center executives.

I've never worked harder to strike the right tone with a formal communication.

It paid off. It took about seven months, but it paid off. The cancer center committee that reviews standard practices discussed my points at their quarterly meeting, did their own research, and ultimately agreed with me. This group has seventeen cancer centers as part of the parent organization.

My experience + frustration + research + communication resulted in a formal change to the standard of care that will update recommendations given to future patients undergoing radiation therapy for breast cancer. 

Yay!

It was really difficult to work full time and keep up with grad school while going through treatment in 2020. It was worth it.

I'm now a year and a few months out of treatment from Breast Cancer Round 2, and so far I'm living with NED (no evidence of disease). I can never let my guard down, but I'm in a good place with my life.

Plus, I'm now a doctor!

(The diploma arrived a few months ago after the university postponed the January 2022 graduation ceremony to May, thanks to COVID putting Delaware into a state of emergency again.)

My dissertation focused on software adoption strategies from people at a large technology company who adopted Jira Software. I like to joke that I've got an MBA, only a step higher. The funny part to me is that in the tech industry the letters DBA typically mean "database administrator." So, I'm not likely to put "DBA" after my name on my LinkedIn profile.

Anyway, I thought that after seven years and several major life changes, it was time to update my blog.