How we got here: a little backstory
Welcome to Gory Details, a cancer newsletter. For those who need some introduction, hi-my-name-is-Rosemary-and-I-have-breast-cancer. Great, got that out of the way.
Okay.
Backing up a little. These are the details so far. Mostly not gory, but a lot of detail.
A while ago, I noticed a lump in my left breast. Or more accurately, I noticed myself noticing a lump and became aware that I had been noticing it on and off for a while and ignoring it. So I don't have an exact timeline, but I definitely know I found the lump before February 24th, because that's when I emailed my doctor in the middle of the night, after I realized I would be really mad at myself if it turned out to be cancer and I didn't do anything about it. Paying attention for the first time, I thought, feels about the size of a pea.
I went to see an OBGYN doc first, who told me generally reassuring things about how it felt "like a rubber ball" but also said in a very heartfelt voice, "I'm so glad you came in." And she scheduled me for a mammogram and ultrasound the following week. The mammogram was oddly upsetting (sorry, I've never done this before, I said to the the impatient nurse who was mashing my boobs around and snapping at me when I put the wrong hand on the bar), but the ultrasound was kind of fun -- a dimly-lit room with Art Objects on the wall and funky shapes on the screen that I started imagining I could interpret. That was the lump, clearly. I had read on Wikipedia that fibroadenomas (a likely cause of such lumps as mine) are sometimes known as "breast mice" for their ability to move around -- a term I found cute and comforting, but that gave Luke the heebie-jeebies. Something something parasite vibes.
After the ultrasound, the doctor who reviewed the results brought me into her office. It was not clear from the imaging whether the lump was cancer or not, she explained -- it was more irregular than expected for the usual benign things, but had a relatively smooth edge. They needed a biopsy to learn more. That was on March 20, and they scheduled the biopsy on March 28.
"I'm so sorry you had to meet me like this," said the doc as I was leaving.
"Well, we all have to meet you eventually," I replied. She seemed a little nonplussed.
Around that time, I took stock of the lump again. Seemed larger. I thought, maybe more like the size of a grape.
The biopsy itself was pretty interesting -- a really nice RN seemed to like my jokes and had great bedside manner throughout, and after the lidocane kicked in I didn't feel any discomfort and found it pretty interesting to watch the various needles going about on the ultrasound monitor again. I also admired the doctor's sterile technique, really rigorous glove-up action and lots of practical attention to everything for what is a pretty simple procedure. True professionals. The RN and I chatted for a while afterwards about conspiracy theories (vaccine truthers, global warming apologists, weird medical technology people) as he pressed down on the incision site to stop the bleeding.
Later, they told me the results would take a few days -- maybe that Friday, maybe the following Monday. Friday afternoon, I looked at my phone as I came out of a meeting and saw that I had missed five phone calls -- after the first one, Google had marked the number as a spammer and failed to ring. I tried calling back but the number dumped into Kaiser's general line. So we waited through the weekend and tried not to think about it.
Monday morning drinking tea in bed, I saw I had a call coming in. (My phone, annoyingly, has been a source of much stress throughout, as I cannot seem to be sure it is set to ring, and also the ringer is connected to my notification alert sound so if I have the volume all the way up, every text and email makes a loud chirp -- and I get a lot of work emails, argh.)
On the phone.
It's cancer, they said.
I'm so sorry, they said.
That was April 3rd. I asked my mother for family cancer history, and she came back with a whole essay. It seemed important at that point to remind myself that our family is huge and maybe this wasn't a disproportionate amount of cancer for the total number of people involved. But it did seem particularly notable that my grandmother and three of her five sisters all had breast cancer, albeit mostly in later age. So there may be something in the genes. I went and got my blood taken for genetic testing. Results on that should be coming back soon -- supposed to take about two weeks.
I met with my surgeon that Friday -- Dr. Melissa Chu. She explained a few things.
Facts:
The tumor is invasive ductal carcinoma, the most common form of breast cancer. Pathology reports from the biopsy indicate it is estrogen receptor positive (ER+), progesterone receptor negative and HER2 negative. ER+ means I may be a candidate for hormone therapy, after the initial stage of treatment, which may go on for up to five years. I also have grade 3 cells -- this means the most abnormal cells, probably more aggressive and faster growing.
That tracked with my observation that it seemed like it was growing just over a few weeks.
The course of care in these things is generally surgery first, then from the information they can get from the surgery, they will decide on either radiation or chemotherapy. Surgery options are either mastectomy (removal of the whole breast) or the delightfully named lumpectomy, which is, you guessed it, the removal of the lump. We are aiming for lumpectomy at this time.
Lumpectomy is an outpatient surgery with a typical recovery time of one to two weeks and relatively low risk.
During the surgery they will remove some sentinel lymph nodes -- these are the first-in-line lymph nodes for anything coming out of the breast, so they are the first place wandering cancer cells will show up. The lymph node pathology will help identify the stage of the cancer.
They will also check the lump removed to see if the margins are clear of cancer cells. If not, they will have to go back in and remove more tissue: another surgery.
Finally, they will do oncotype testing, which I gather is looking at a series of tumor markers (genetic or otherwise? I don't know exactly yet) to determine exactly what kind of cancer it is and match it with the appropriate treatment plan. This is when we get the chemo-or-radiation decision. Takes about two weeks after surgery.
Dr. Chu also explained that she was going to review my case with a team: the Tumor Board. So things are bound to change as more information and opinions are gathered.
Dr. Chu, I should note, is completely without a sense of humor. We were discussing mastectomies, specifically options for reconstruction and plastic surgery. She was explaining the different kinds of implant options when I asked if they could install a squeaker.
She stared at me. "A what?"
"You know, like in a dog toy -- a squeaky toy, when you squeeze--"
Utterly blank expression. "No one has ever asked me that."
"Or what about... maybe like a clown flower that squirts a jet of water..."
More staring.
Moving right along.
Scheduling surgery entailed another phone call fail that afternoon -- once again my phone didn't ring, and when I tried calling the scheduler back, no answer. So we had another stressful weekend wondering when we would get a date, but by Monday morning we were able to locked down April 21 -- just two weeks after the initial consultation. That meant I could start putting work arrangements into place to go on leave, which was a big relief.
But then, as I was talking with yet another doctor to go over pre-surgery checks, Dr. Chu turned up on Doctor Chat to ask him if he had contacted me yet.
"I'm telling her I'm on the phone with you right now... She says she just sent you an email?"
I opened the email: apparently the Tumor Board radiologist recommends I get an MRI before surgery, but the next available MRI wasn't available until after the surgery date. They don't like the quality of the mammograms -- apparently my boobs are too lumpy to see the tumor -- which means there could be things they've missed, or they may not have the tumor size pictured right. Dr. Chu wanted to talk right away about options.
I said goodbye to the pre-op doc as he texted Dr. Chu to call me RIGHT NOW.
This conversation was particularly stressful, because everything was murky: how important was it to get this MRI, what would it do to possible schedules (if they saw something else, another possible tumor, they would want to do a biopsy, which would mean postponing the surgery, and if that came up cancer then we're probably talking mastectomy, and also if we give up the current surgery date we don't know when the next available window will be because Dr. Chu will be unavailable for a few weeks and her backup has her own patient queue, and with the rate of growth any delay on surgery seems risky -- but if we postponed MRI until after surgery the imaging wouldn't be as clear and we would need to wait 4-6 weeks which would mean delaying chemo or radiation and ALSO possibly having to go back for another surgery if they found something)... We agreed to think about it and come to a decision the next day. This was Tuesday, April 11.
Wednesday morning, I get a call from the MRI scheduler -- I have an appointment for April 18. Dr. Chu pulled some strings, cashed in some favors, made threats, and got someone else booted so I can get in. So now the surgery date is still April 21 unless the MRI finds something new.
Oh, I haven't mentioned yet -- one of the side projects this started was a whole fertility consultation thing. If chemo is indicated, Kaiser will cover IVF treatments -- egg harvesting -- because of the likelihood that the drugs will wreck my eggs. We're not sure we are even interested in kids, but if we want to keep that door open, we'll have to do some serious calendar-fu to squeeze in a full 3-week course of treatment between the oncotype results and the chemo that is supposed to start some 4-5 weeks after surgery. We're in wait-and-see mode on that, but it would be nice to have the option if it doesn't disrupt the cancer treatment schedule.
So that brings us largely up to present. I'm glossing over a few things -- you don't really need all the details like changing birth control (estrogen-based methods are out) or the scrambling to get coverage at work and figure out the leave situation.
I guess I should mention how we're doing: this is all pretty stressful, but we're mostly fine right now. Kaiser has been great -- it's so, so good to have access to that rarity, functional healthcare in America. People really want to help and for the most part, there isn't anything for them to do. I've told a number of people, mainly for logistic reasons, but I'm really appreciative of folks who just look for ways to simplify things for me (leaving me alone is great! I'm pretty good at finding the specific help I need!) or who are good at finding humor in a crappy situation. I'm definitely reaching a state of continuous dread (this morning: feels like we're reaching walnut stage?) and I value distractions, not shocked faces and sympathy bombardment. Luke is having a tough time too, but he's been wonderfully supportive to me.
So that's where things stand today. I'm going outside to get plants into the ground this afternoon. My tomato plants are coming along well; the tomatillos are pot-bound and needed transplant last week, and the peppers and basil need to go into the greenhouse but the irrigation line is still in disarray from last fall's clean out. But the front yard is full of wildflowers in bloom, which is turning into a really nice display. I have a good book to read in the hammock out back, and we'll probably go for a hike in Wildcat Canyon tomorrow. My oyster mushroom buckets are gearing up for another flush of mushrooms this week. And I'm trying not to think about cancer all the time. So please enjoy a couple pictures of our first crop of mushrooms and Isidore the cat posing seductively for you.
