Cancer: The Year In Review & What's Next for Treatment

cw: cancer and some times when it felt hard

The pictures below are a mostly chronological record from diagnosis to end of chemo. This one above is how I look today. It might be morbid or strange, but from when I was diagnosed I wanted to track how the experience looked (and, as it turned out, how a smile probably makes more difference in how I feel looking back at these than even the loss of hair--though I am happy to have that back, too).

At the start of October, it has been just over a year since I first felt a lump in my breast, thus putting in motion a year of medical appointements, tests, consults, and treatments. The other week my count was that I'd been to well over 100 medical appointements this year. In fact, I think it's been over 100 days of appointments, and many times there were several different medical tests, meetings, or procedures in a day.

The picture I took in my office a day or two after diagnosis. I was pretty terrified and this was as happy as I could force my face to look. Looking back on it I vividly remember how I felt (not great).

My 100+ number includes 20 weeks of chemo with 16 infusions, sometimes three appointements in one week, with the blood work and doctor visit, infusion, and growth factor shot on three consecutive days. Three different days of surgery, which includes 6 separate surgeries, at least 3 surgeons, and three hospitals, plus the initial biopsy. We took 7 trips to Seattle for consults, operations, scans, and other appointments with specialists. I believe 4 or 5 of those were overnight trips.

The picture I took during one of my last workouts before chemo started in December. I felt morbid, but I also figured I'd lose all my hair and most of my strength and kind of wanted to see how drastic that change could be (spoiler, I lost all the hair and a significant amount of strength, but it was never as bad as I imagined it would be).

There were also 33 days of radiation, plus several days of meetings or appointments to plan and take images (CT) for the radiation treatments. I counted 18 or more Lymphedema Occupational Therapy and Physical Therapy appointments, but I didn't write all of them down.  

During one of my first infusions (obviously, as I still had hair). Alison had trimmed my hair fairly short because I was told I'd lose it, but was too chicken to shave it. I kinda still thought I might not lose it all.

As of today it's been nearly 15 months since I first consulted my doctor about symptoms, 12 months since I asked to see another doctor, and a little over 10 months since I was diagnosed with invasive breast cancer.

The day I started losing my hair. I wanted to remember this day as funny and shocking, and it was, but it was also downright scary (I screamed in the shower when the hair started coming out).

Though I think the way they say it is that I am done with "active" treatment, I'm really not done with treatment or with medical appointments. I met with my oncologist last week to consult about what's next. I also had a lymphedema appointment and a PT appointment last week and another of each this week, which makes me question how people use the term "active treatment" (I feel fairly busy, at least).

 I really hated how it looked to have the hair thin like this and felt better once it was shaved off. Also, though I promised my nephew it wouldn't hurt to lose the hair, it kinda did (sorry Cam, but it didn't hurt much).

The meeting with the oncologist went more or less as expected. In December, both sets of doctors (Yakima and Seattle) had said that I'd be on some kind of hormone therapy pill for 10 years. I knew a bit about what the options were and had looked into them online and asked about them in some breast cancer support groups. Because my cancer was hormone positive, limiting the body's production of estrogen or limiting how the estrogen can be used by the body should limit the cancer's ability to come back or grow.

Sean came with me to nearly every infusion and has also been pretty incredible with his advice or his calm and reasonable response to things that scared me. 

My oncologist gave us two options for what kind of hormone therapy I'd be on. Sean asked which was better and she clarified that one had very slightly better risks of recurrence so we are doing that one. I will start taking a daily pill called Femara (which sounds like an off-brand female superhero to me) and I will also be getting a shot of Lupron (her werewolf sidekick, obviously) once every three months, if the insurance company approves it. The werewolf sidekick also comes in 1 month and 6 month shots, so the insurance company may dictate one of those instead.

After we shaved my head, I had a hard time getting used to the bald. It didn't help that my shirt appears to be an inch above my actual shoulders here.

Femara is an aromatase inhibitor that, I believe, keeps the estrogen from being accepted or used. I think the Lupron is to reduce the amount of estrogen in the body. They both come with potential side effects. The ones my oncologist highlighted were bone pain (been there), hot flashes (done that) dizziness or vomiting (hello again), and fatigue (I know you), as well as osteporosis (a new member of the team). My flippant reaction is that I've had most of these side effects already, how bad could it be? My justifying reaction is that I am fairly young for breast cancer and fairly active, so the osteoporosis shouldn't be as concerning for me and exercise appears to be the recommendation for fighing fatigue, so that's me in a good position going in. My panicked reaction is that all of that is better than more cancer.

My daughter's friend did try to give me some styling advice. Here she is treating a scarf like hair, but I think she'd prefer if I'd gotten a wig.

I asked the oncologist about my risk of recurrence and her response was simply "we don't know" which, I mean, yeah, but... I appreciate that she is honest with me and clear on what we do and don't know, but I also want her to tell me that I'm going to be fine, fine, fine.

I wanted to keep a visual record of how I looked throughout treatment, but I haven't been a fan of taking pictures of myself, so I used cats to make it more fun

Later in the appointment she said "not to be pessimistic, but..." which, I mean, this sentence isn't going to end well. She said that because my cancer hadn't been entirely erradicated by the chemo, that meant that some of it was (is?) resistant to the chemo and that increases my risks of it coming back. Before chemo she had said that my type of cancer was unlikely to be completely erradicated by the chemo, so I felt a bit wrong-footed with the way she talked about it last week. I kinda hoped she was going to say "good job, your body really fought to make that cancer smaller, this is super duper news and you're going to be all better for ever and ever" or something like that. This take on it doesn't change what happened or my risks, but it made me a bit blue for a day, until I got swept up in the manic speed of classes and union and all of Alison's many activities (we spent 18 hours doing marching band stuff yesterday).

Video (poor quality, sorry, I'm not a videographer) of Alison with the AC Davis high school marching band at their second performance of the competition we attended yesterday in Everett. She's playing marimba in front ensemble (near the middle, front) and wearing a mask.

The other thing the doctor said that got to me was that there's another shot they can give me to help prevent the cancer from metastasizing to the bones. My reaction was "sign me up, here's the arm, ready and waiting, let's do this." She wants me to try to superhero duo first to see if I tolerate the side effects before adding the no bone mets shot, so I don't know much about it. I'm anxious to not have bone metastasis, but I'm trusting that she knows what's most important now.

My approach to feeling awkward about selfies and how I looked with no hair was to exaggerate how happy I felt 

Right now we're waiting (again) for my insurance to approve the Femara/Lupron. The standard is to start hormone therapy one month after radiation ends, which would be next week, so as much as I may feel like it, I am not actually late or behind (again, I always feel like this when waiting before/between treatments). When I walked into Northstar last week, I got out my insurance card since it'd been so long since my last appointment. When they didn't want to see it, I realized it had, in reality, been less than a month since I'd been in that same building for radiation treatment.

Another awkward selfie, but one I wanted to take to celebrate and compare how I looked and felt after chemo vs before. I was also pretty relieved that the hair seemed to be the biggest change

I've been told that it is normal to feel kind of abandonded when radiation ends because regular doctors visits end and you're done. I feel done, but I also feel decidedly not done. Waiting in the check-in line for oncology I simultaneously felt like I viscerally did not want to be in that line, like I didn't belong there because I don't actually have cancer anymore and thus shouldn't be taking up space in that line along with folks with scarves on their heads, but also like I didn't actually know if I was done with cancer. It wasn't a comfortable bag of feels.

Feeling more confident with more hair and celebrating the day I was able to lift my arm to 90 degrees after surgery

Today I went to get my COVID booster (I had waited for the ok from my oncologist) and was stumped by the question: Do you have any other health conditions? Um...do I have cancer? I was afraid to say "no" because what if the cancer heard me and started coming back? Or what if the tiny bits of undetectable cancer have survived all this treatment and are hiding inside my body, just waiting for me to say "no, I don't have cancer anymore" so that they can metastasize to my bones or brain or whatever? But also, how can I answer that question "Yes" when they took out the tumor? I'm done-ish with treatment, kinda, sorta. I don't-ish have cancer. How do I answer? The pharmacist probably didn't care much about the answer, but it was an emotionally difficult question for me.

visiting with a fellow cancer survivor at my home for the Yakima Artists Studio Tour

The one piece of good news from the oncology meeting is that the standard for treatment is apparently now only 8 years of pills rather than 10. They want you to take it for at least 5, but realize that the side effects can be pretty severe. At this point, 5, 8, or 10 still seems like a long time to take a pill and get a shot every three months. I suspect that by the next time I find time to write, I will have started the pills and shots.

Celebrating my last day of radiation at North Star Lodge