No, Nanny was not offering to flash me. She was much too prim and proper for that! (She had to “put her face on” before we left the house).
Nanny was offering to show me the prosthetic breast she got after her mastectomy. She was diagnosed with breast cancer in the early ’90s and opted to have her left breast removed, no reconstruction, no further treatment. Why did she want me to see it? Maybe she was trying to have a tender grandmotherly moment or share something of herself with me. Maybe she thought it would interest me. I just remember it struck me as a weird question, and the weight of the prosthetic seemed excessive.
A few years later, Nanny’s cancer returned. It had metastasized to her bones. I don’t know the ins and outs of what treatment she got or didn’t get. I doubt my mom does either – that wasn’t the type of thing Nanny would discuss. After her bones, the cancer went to her brain, and she died on December 31, 1999 (we joked that she couldn’t stick around for the insanity of Y2K). Because she knew it was coming, she had planned her memorial and everything else down to the finest detail.
Maybe even before Nanny’s diagnosis, mom had a waterproof “breast self examination guide” that hung from the showerhead in the bathroom we shared. No one outside of the medical community (or maybe even within it) knew about a breast cancer gene at the time, but mom was being proactive with her health. After Nanny’s death, mom kept up her annual mammograms, following advice for biopsies as necessary, and getting the all clear year after year.
Until December 2012… when we were hoping that the dawn of a new year would leave behind the six months of back to back death, disease, and disaster that riddled our family. How foolish of us! If you’ve known me long enough, you probably read the Caring Bridge blog where I documented my experience of being mom’s primary caretaker during a horrific process plagued by side effects and complications. Mom chose to do every single thing the doctors’ said would increase her chances of survival, unlike her mother had done. So during one particularly rough aftermath of chemo, we ran the numbers. Nanny had about seven years of life after her mastectomy, not all of those years were pleasant and peaceful thanks to metastasis. Mom and I decided she would need to live for AT LEAST double that time – fourteen years – to make the nightmares of treatment worthwhile.
Mind you, my brother had JUST begun dating the woman who would become his wife and mother to his two awesome daughters, giving our mom grandkids she never thought she’d have. Fourteen years, TEN of which have already gone by, hardly seems like enough with a two year old as cool as my youngest niece to watch grow!
Once we got mom past radiation, the final “big” step of treatment, we began a cycle of anxiety-inducing waiting whenever she had a check-up. Mom also made the decision to remove her right breast to prevent back problems because she was not able to have reconstruction on the left one, the one that initially had cancer. We found out after that surgery that there were pre-cancerous cells in her right breast tissue, so it was a good decision.
If you have paid attention, you will notice that both Nanny (mom’s mom) and mom had invasive cancer in their left breasts. This only occurred to me later.
Once mom had been okay for a few years – and my sister-in-law was pregnant with her first child – we decided that I should start the process of early imaging, maybe even genetic testing, because I was 35 and it seemed prudent. Plus, I was on a medical leave from school anyway and had time to dedicate to doctors’ appointments and my physical health (the leave was specifically for mental health, so that was a given). I sought out NYU’s guru, who I had been told (and am still told) is THE BEST when it comes to genetic cancers.
I saw her in November 2017, four years after mom finished radiation. I was happy with how much time the doctor took with me to understand my family history and mom’s case. She was also well-versed in how to “play” insurance so that we could get the tests we would need. Additionally, she was sensitive to the fact that I had a niece on the way, and we were keen to make sure this wasn’t something that would get to third (me) and fourth (my niece) generations. The doctor’s recommendation was to do baseline mammography and ultrasound for me, to have on file, and to have mom get tested because her insurance would absolutely cover the testing, whereas mine might want more documentation or whatever it is insurance wants (my sanity, I assume. They want to take any shred of sanity I have left!)
I went with mom for her spit test in December 2017 and for my own baseline imaging in February of 2018 (actually, my baseline imaging took place on the fifth anniversary of mom’s initial mastectomy… maybe that was a mistake). Mom does not have the BRCA gene, making it highly likely that I also do not have it. My baseline images showed nothing unusual – just dense breast tissue, which I’d been told about by gynecologists since I began going. (“You have lumpy breasts” is not something that boosts the self-esteem of an awkward teenager with nearly dysmorphic body image… but that’s what she said, so there you go.)
Fast forward to my annual physical in November 2021, and the doctor asked when my most recent mammogram was. It had been almost four years. The doctor was displeased – “with your family history, you should probably be going every three years at the longest interval, preferably every year.” Well, the soonest I could get in was June 2022, a few months after my 40th birthday. Nanny and mom were both in their 60s when they were diagnosed, so imagine my surprise when I got a call only days after my exam that I had to return to the office for further imaging.
It was the end of the hardest school year I have ever had, I didn’t know where I would be working in the fall, and I was nearly dead inside from the trauma of every day in that place. So my energy was diverted from the anxiety. If I had cancer, sure that made sense because this school does kill people. I went back in a sort of haze, but with the knowledge somewhere in my brain that I was in good hands at NYU. A year and a half after my mom’s diagnosis, my bestie without testes went through the same process (without as many complications, thankfully) as a way for life to test me on all that I had learned in taking care of mom. (When I say I know stuff no one outside of medicine should have to know…. ugh). I was also vaguely aware that extra tests meant that they were being cautious, and if something was alarming, they would biopsy me right away.
But also, it’s too soon. I have another twenty years, even if it’s not a discovered gene like BRCA. I have pretty much accepted the fact that I will get some kind of breast cancer at some point, but not discover it on my FIRST mammogram after 40!
The conclusion in June 2022 was that I have some areas on my left breast that are especially dense but are “probably benign.” “Probably benign” is an official medical term used in the 0 to 6 BI-RADS scale of breast imaging. It is not a calming thing to hear, but it was the result nonetheless. “Probably benign” is a 3 on the BI-RADS scale. Because of this score, the radiologist recommended that I come back every six months to have a mammogram and ultrasound on my left breast. Righty can stick to the annual program.
In December 2022, I was in a significantly less stressful (though still absolutely batshit at times) school setting, so my anxiety had nothing better to do than mind fuck me. Mom’s diagnosis had come in December, so why in the HELL had I gotten myself on a June-December schedule for this shit? Was I just -trying- to mess with life’s writers? I mean, I did have my baseline imaging done on the anniversary of her first surgery, am I really laughing in fate’s face this way? Of course I would get diagnosed the same time of year.
But also, it’s too soon. I have another twenty years, even if it’s not a discovered gene like BRCA. I have pretty much accepted the fact that I will get some kind of breast cancer at some point, but not NOW.
Unlike June, the radiologists did their second check while I was still in the office. It was a long process. The first set of images was not satisfactory, and I was getting an ultrasound anyway, so I had stayed in my gown in a chilly waiting room. I was called in for more specialized imaging – there are paddles that can be added to the machine to squish different parts of your boobs in even more uncomfortable ways! After the second fondle, I waited again. I was moved along to ultrasound, where I got nice and gooey with a tech who then said she would let the doctor check the images. The doctor opted to do the ultrasound all over again, but eventually a member of the radiology team came in to tell me the area they had identified in June appears stable, come back in six months for annual on the right and trouble maker lefty’s six month check. I was again BI-RADS 3: probably benign.
At that point, I made the decision to get off of the June-December schedule for my mental health. Mammograms and ultrasounds are stressful enough for “normal” women, add to that my family history of breast cancer, my anxiety, and the time of year stirring up memories, and I basically need to be sedated to do this every Christmas time.
So in May, when the radiology department sent me a letter reminding me that I was due for my mammogram and should get my general practitioner to schedule it, I decided I would bump it by a month. Nevermind the absurdity that I have to get my GP to write a prescription for a mammo that radiology told me I needed, has me on record for needing, and has sent me a letter reminding me that I need it. I saw my GP in early July, and she put in the order. I immediately tried to schedule the appointment, but the first available time was August 31. Nevermind that radiology is the department that told me this needs to be every six months and I have already bumped it to seven… whatever. None of it makes sense.
Do you remember which of Nanny’s breasts had cancer? Which one of mom’s? Which one of mine has to be more closely monitored? Yes. The left one. Our left breasts. But mom does not have the BRCA gene, so we will have to chalk it up to undiscovered genes.
August has been full of doctors’ appointments anyway because, as any teacher will tell you, it’s just easier to save all of the appointments for summer than it is to work out someone covering a class or, God forbid, you take a whole day off. One appointment was for my shoulder because I have been having significant nerve pain that runs down my left arm, almost like sciatica but in the arm instead of the leg. No, chest pain does not accompany the arm pain, so I am not in danger of having a heart attack. There are a number of possible explanations that vary in how scary they are, and the specialist I went to see is covering all the bases. However, I joked on instagram “it’s not a tumor” (Kindergarten Cop) with the added question “If it’s not a tumor, why do I have so many new doctors’ appointments?” I also joked with my therapist the day before my mammogram that the only way breast cancer can cause back pain is if it has metastasized to bone cancer, and if my mammo reveals cancer that is THAT aggressive, nerve pain doesn’t matter because I’ll be dead soon enough. Yes, these are flippant comments that were funny and may be funny again someday.
But they make me cringe now.
Maybe it was because there was a problem with my chart when I arrived to check in at the radiology department. Maybe it is just because I get anxious since lefty decided she needed to get her picture taken more often. Whatever. I had a sense of foreboding in the waiting area before they called me back to put on my li’l gown.
The initial mammogram was downright painful this time because in addition to the smashing, my shoulder and arm hurt no matter what position I am in. The awkward angles and manhandling that went into getting my boob in the right spot had me ready to whimper. Ever seeking to be a good patient, I didn’t say anything and dutifully went to the sub-waiting area, still in my gown, to receive further instructions.
Of course they wanted more angles and magnification and markers for my left side, the side where I am having shoulder and arm pain. A second mammo tech worked with me this time (nice to spread out the fondling, really), and she said that the compression would be sustained and hurt more because of the specific area the doctor wanted magnified – oh good. One of the problems with my arm is that after the nerve pain spikes, my arm goes numb. So, I was standing in an awkward position with my left boob smashed securely in a machine and my left arm in a strange hug around the machine and zero sensation in that arm. The tech was telling the truth. I had to stay like that way longer than a standard mammogram, the compression was tighter, and she had to put stickers in a few places to have a point of reference in the pictures. We had to do this in two poses to get the requested images. Once she was done, she said to just stay in the machine room because the doctors might want more. Before she left, she also said, “Why don’t I mark it on your skin too, so we know,” at which point she drew two sets of googly eyes next to three daisy decorated x-ray marker stickers.
As I said, I know the extra pictures are for caution and clarity. I know NYU will biopsy me right away if anything concerns them. Even before the googly eyes, I tell myself that I will have a biopsy today. And it will hurt. Even the least invasive method requires local anesthesia, and as I have learned in subsequent research, the mammography machine. Based on where the woman has marked me, I know that either biopsy method – the little needle or the huge hole punch – will be excruciating even with a local. I also know I have not brought any anxiety medication with me, which was perhaps foolish. I know too that I may have to do more smashing and the ultrasound still awaits.
Luckily, I did not have to do any more smashing – they had what they needed. They probably didn’t even need to do the ultrasound, as I’ve been reading that ultrasound doesn’t usually show the problem areas that pop on a mammogram. But it is additional information and it was in the order, so we do it. The ultrasound tech is yet another person – if you are keeping count, three ladies have fondled me! Like before, I expected that a doctor will come in to repeat the process. As I laid there in the dim room, trying to find a comfortable position for my arm and shoulder without spreading ultrasound goo everywhere, I thought again “I will have a biopsy today. It will be painful. I will have a cheeseburger after. I will call mom. I will call my bestie without testes. They will understand.”
A cute male radiology resident, maybe 28, came in next. He looked uncomfortable. Maybe it’s because I was laying down with a gooey boob out? He started with the good news once I covered myself. The area that has been troublesome before appears to be stable. Now the bad news. He still looked very uncomfortable. The reason for the extra imaging was that new calcifications have developed that fall into a category that requires biopsy even in a woman who doesn’t have my family history.
This is what I was expecting. I told him I understand, that I’ve been through it with my mom. He visibly relaxed.
But there’s more bad news. Because of where these calcifications have developed, the radiology team cannot recommend the usual types of biopsy. I will need to have an MRI, which *might* provide a benign explanation, but ultimately, I will need to have a surgical biopsy. They recommended I consult with a breast surgeon.
This was unwelcome news, moreso than having to get a painful biopsy right away. At least if they had done the biopsy on Thursday, I would be waiting for results right now. Instead, I am waiting to schedule more tests, including a full-on twilight sedation surgery that will likely mean at least a day off work, which oh by the way starts Tuesday.
The final report was as the resident said – recommend MRI, regular biopsies not recommended, consult with a breast surgeon, the area needs to be biopsied. I have been upgraded from BI-RADS 3: probably benign to BI-RADS 4: suspicious. I have “coarse heterogenous calcifications” that could be nothing, could be DCIS (non-invasive cancer that only requires lumpectomy and radiation), or could be the big show. These possibilities brought to you by generic internet searches that do not take my family history – or my anxiety – into account, so they may be completely useless.
That was the final report. The letter they put in my file does not say anything about the MRI or the surgical biopsy. Confusingly, it only orders me to get my GP to order a biopsy and schedule that biopsy quickly. This letter has also been sent to my GP (and will be sent to me via snail mail so I can keep it in the worst scrapbook imaginable).
I sent my GP a follow up message asking to expedite the process as much as possible given my family history and the fact that the school year is starting. Luckily she saw this at lunch time on Friday, put in the MRI order (and I assume the biopsy order, but that is not visible to me in the online system), and offered to reach out to the breast surgeon she has worked with in the past. I had already called the surgeon my bestie had. Even more confusingly, that surgeon’s office told me the doctor wouldn’t see me until after a biopsy. I am sure I explained that I need a surgical biopsy, so who the fuck performs that if not the breast surgeon? That is a riddle I haven’t solved yet, but the man on the phone was kind.
Though I am not clear on the sequence things should happen in, I was able to schedule the MRI. I was only able to leave a message at the number given to me in the letter that ordered the biopsy. Given that Monday is a holiday, I will not hear anything from them until Tuesday at this point.
But I am left waiting. And I am not even waiting for results! I am waiting to schedule more tests, and then I’ll have to wait for results of those tests. This is all too familiar! The waiting has a markedly different feel though. Back then, I was waiting for information about mom, and I was ready at any moment to jump to action in whatever way would be most helpful. Now, waiting for news about myself, knowing too much about what awaits if the news is anything other than “benign” and even if I get to hear that, it seems like it will only be after an unavoidable biopsy, whether they decide they can do it in the less-invasive but still painful way or if it has to be surgical… it’s too much.
I ate some cheese about it on Thursday afternoon. I also treated myself to some hummingbird cupcakes. At physical therapy for my shoulder and arm on Friday, I asked that she not teach me anything new because it would not stick in my brain. After that, I went for a long walk. I requested faster acting anxiety meds from my psychiatrist, which he ordered immediately and I picked up today.
Yesterday I cooked too! A healthy turkey shawarma lettuce wrap meal kit that I forgot was coming from Hello Fresh. I took a bath and sang. Some songs from church camp musicals (“Friend of a Wounded Heart” and “the Peace that Passes Understanding), some songs from church musicals (“Broken Places”), some ’90s favorites from Sarah McLachlan and Jewel. I even sang myself “Quiet,” my favorite John Mayer song.
Today I haven’t done much of anything except sleep a little later than usual, read on the couch (Dan Rather’s What Unites Us), try to get Leo to cuddle with me.
Mostly I don’t know what to do with myself. I -know- worrying won’t help, but I can’t just turn it off. I know I will do whatever I need to do as I get whatever information there is. But the waiting… It is a powerless place. There is nothing I – or anyone else – can do.
So as not to close feeling completely forlorn, at least the verb for wait and hope are the same in Spanish: esperar.
Frail Phrases 