9/12: just keep swimming
disclaimer: my pre-med steroids are down to their smallest dose before we drop it completely and it’s still got me buzzing with insomnia tonight that is working its way through in a nightcap of words. it’s what you’ve probably come to expect as a reader but touches on some themes that still feel heavy to me and details that have not been mentioned here in the same detail or statistic.
this morning i met Dr. Mehrohtra, my new oncologist (read post “tomato.” if you’re like… whaat? new oncologist?) and i am very, very pleased. she was humble, asked good questions to get to know me and my understanding of and coping with Project Cancer, and is very well spoken on some issues i was not educated on by Dr. Shah regarding my subset of breast cancer.
you see, metastatic breast cancer, when it has metastasized in just one or two singular spots (sometimes up to 5), is considered “oligometastatic”. i found out on January 19th that my cancer was not stage 1b or 2a as initially predicted, but early stage 4 and on January 22nd i signed consent for treatment that indicated the goal of my treatment was not to “cure” but to “prolong life” and “minimize malignant masses prior to surgery” - these treatment goals are consistent with a stage 4 diagnosis.
from an article at the National Institute of Health, this is what i find to be the takeaway:
…metastatic solid tumors are considered largely incurable. It is increasingly appreciated that oligometaststic cancer differs from multi-metastatic disease in prognosis and survival. Oligometastatic breast cancer (OMBC) is, therefore, sometimes considered as an intermediate biological state between localized and widely metastatic disease… Treatment of OMBC is still controversial in view of sparse data that is retrospective. However, there is an increasing shift toward individualized, multidisciplinary management of OMBC with the intent to cure some patients.
i first heard the word “oligometastatic” on May 6th.
(You All: Da Fuq?
Hana: yuuup!)
i’ve met a friend in chemo, Erin, who is another diagnosed-in-her-early-30’s as stage 4 or metastatic. she’s been at it coming up on 3 years — which is, statistically speaking, the median survival rate of a woman with metastatic breast cancer. she told me people with certain stage 4 diseases (breast cancer being one of them) are guaranteed eligibility for social security disability and receive “compassion services” which expedite the application and approval process with the appropriate documentation. at the point in time when i am planning and curating my post-treatment life, this snippet of information could be a very important factor. but, due to the the individualized route we took in consideration of my oligostatic nature (treat as though stage 3: run a Hail Mary for a shot to ‘cure’ ), the medical notes are not written in such a way that would support me to qualify for the “compassion services”.
re-staging is completed after surgery, at which time this may have become more consistent, but i was angry when i found this out and started feeling like a major imposter telling people i have stage 4 cancer when i found out the notes don’t support that. silly? yes, so i’ve heard but that didn’t stop me from thinking it was true! i’ve kept swimming and am feeling clear out of that space now and choosing to focus on how grateful i am to continue to treat, manage, rinse, and repeat as necessary under the care of Dr. Mehrohtra.
we also talked a lot about surgery. i am not sure if i’ve said it here but i am having a double mastectomy and lymph node removal. we’ll know what the lymph situation is once we do imaging after chemo but the best case scenario will be a sentinel lymph node biopsy, which means there is clearly not cancer present in some or many of the lymph nodes and only the ones with cancer are removed. this will be the most promising option to minimize the risk of developing lymphedema. at this time, it is assumed radiation will be recommended in some capacity, in which case, i will opt for re-construction at a later date to minimize recovery and radiation complications. i updated the ‘schedule’ portion for those interested in the timeline.
Colleen, Anna, and Gruver were with and we dawned some Finding Dory (originally Nemo’s sidekick in Finding Nemo) hats. Dory is quoted to say “when life gets you down, you know what you gotta do? just keep swimming!” and keep swimming: we will!! i couldn’t help but shit grin through the whole check-in process waiting, as i looked over at those three and saw them wearing Dory hats in the cancer center lobby for me. my friends and family have showed up for some dark and raw moments with me through the last 5 months and played along with my theme-o shenanigans like reeeal good sports. what a fricken blessing.
since there wasn’t a theme-o last week, this was the first time the Tuesday crowd got to experience Theme-o Chemo and BOY did we get some smiles and a few questionable looks! SEVERAL people asked “are you sharks?!” . it seemed the only people there who were aged to be familiar with a recent Pixar release were staff, so they all got a kick out of it. there is a woman in the lab, i think her name is Mary, but she just LOVES everything i find at Party City, a real character buff. i told her i was going to leave her my hat but i forgot, so somebody remind me to bring it next week! ;)
Dory also has short term memory loss, so there were some jokes about chemo brain that played right in. i have never been so good at forgetting and losing focus on a conversation. today, when completing the symptom inventory assessment before the visit i without a doubt circled the most i have yet.
the expectation vs. reality of neuropathy is interesting. i seem to find that my hands and feet get a numb-and-tingly fall asleep feeling much quicker than usual and it lasts longer than usual as well. this is the most bothersome, especially in my right leg by my knee and bone growth.
my wheels get pretty stuck on this one, with some trauma flashback and catastrophizing about my bone growth again, because my surgery in 12th grade to remove that bone growth was because i couldn’t sit without my leg falling asleep. Colleen is quick to remind me, it could be the same size it’s always been and my weight loss is making it noticeable in a way it hasn’t been but it isn’t sitting well with me. we will have a better look at it when we re-image in July.
i still have not experienced any nausea or vomiting. (and everybody said… AMEN!!)
i am shaving the peach fuzz from my head every couple of days and while in Denver got boosted with confidence by Grensing and Vuch about how wonderful and easy it is — i hadn’t done my first solo flight with the Mach 3 yet — and a week into it, i find an almost proud pleasure in this connection to my inner masculinity and the liberation i experience being a shaves-her-own-damn-head woman. #HanaSavorsCancer
my eyebrows are at about 20% of their pre-chemo fullness and I don’t have more than 20 eyelashes total. this is a hard body image thing to face in the mirror. add this to allergies and a similar lack of hair in my nose, and my clothes haven’t been so dripped in face mess since Audrey was an infant!
i get hot flashes several times a day which are accompanied by an anxious flight sensation in my entire body. some time ago when talking about the differences between AC and Taxol, i mentioned i thought i’d had signs of my period but that was probably wishful thinking. my ovaries are either shut down or starved for estrogen and this is something i must accept and get used to now, as the “managing cancer” aspect of my future will be by way of estrogen suppression. since the primary tumor was estrogen positive, keeping this cancer quiet requires it.
we reviewed my blood work and were able to look back over at a progression of the weeks as well. today was number 9, 3/4 of the way through. every 3 doses is considered a ‘cycle’ and the week after my last cycle completed was when my numbers tanked and we had to take a break. they are trending that way again so Dr. Mehrohtra suspects next week will be called off. so, for those of you who are now into the number game, the white blood cells are at 2.1 and the neutrophils are 1.19. she said if they are below 1.00 we will break.
i was originally anticipating surgery would be sometime the week of July 22nd but chemo on 7/2 will make that a non-option, so we are pushing my break from 3-4 weeks to about 6 weeks and surgery will be as close to August 12th as possible. i was feeling very willful about this after the appointment, because it just wasn’t what i planned and i don’t plan things in my head for shits and giggles, i plan them because I WANT CONTROL, OKAY? i still get control, i said if it can’t be before the last week with July dates, it’s gotta wait til the 12th of August but again, acceptance takes time. i feel better about it now and even if i get to finish the last three as scheduled, i think i will take the 6 week break over the 4 week to get full participation at C’s annual birthday weekend at the cabin and the Torgerson family get together in Aitkin, both of which would afford me the opportunity to swim and wakeboard at the lake, and shoot clays, drive ATVs, and help with building demolition at the farm. more of that #HanaSavors
Audrey’s last day of school is tomorrow and i’m going to try getting her into 3 days a week of camp at the YMCA next week to see if she likes it and then to keep her busy at least every other week for a bit. she’ll still go to her ninja class on monday nights and the summer session of the cheer/pom class she finished in April. she’ll be in the 7-9 year old class this time, which will hopefully give her the challenge she is looking for in that activity.
she’d been saying she wants to go to a Twins game and while i was in Denver, my dad scored some suite tickets to the White Sox game. they hit a foul ball to the suite next to them, which happened to be the club owners. the owners wife caught it and gave it to Audrey who was on cloud 9.
she has friends from school who live near her bus stop with a trampoline, our outdoor pool is open, and the playground and courts right outside our patio door are filled with kids to play with each night, and i hope to get out on our bikes a couple times a week. for the most part, the separation anxiety problem a while back has resolved itself but we are going to see my therapist, Amy, to re-acquaint to a space for her and us to maybe process a little bit of Project Cancer together through some art or song writing. all in all, Audrey is a rad kid and she’s a hell of a trooper, so while i know she’s feeling a lot that she can’t fully express, i can tell you her spirit remains relatively steadfast in the face of whatever fears and burdens she’s feeling. it’s also such a good heart feeling to have a new perspective and sense of honor and appreciation to be her mom and learn about her in new ways.
i think there were a few other things i wanted to talk about but it’s 4:20 AM and i am starting to feel my tired cues so i am going to shift focus and try to shut down. have a wonderful wednesday through weekend!
