List of updates:
https://siangandannie.com/peregrinate/atc3-sup-list/
Here begins the writing. With priority given to settling us into a good routine of care for her, it had been easy to postpone. Then I reminded myself that it’d be good for me to have an outlet. To clear my mind of scattered thoughts that may or may not matter at the moment. To brian-dump, so that I can keep clarity of mind in the present. To rattle off to you. And keep you updated of her; and selfishly, of me.
Thank you, I appreciate you.
Two weeks have passed now, since my return to Seoul. Though it feels much longer.
Annie completed her 10th session of radiation this past Thursday at Gangnam Severance Hospital. These treatments were to take care of the more immediate “oncological emergency” that reared it’s head, metastatic spinal cord compression (MSCC).
She naps now. Her face serene and peaceful, mapping her name, 安. The grimaces from lying down and getting up though, remind me of how she’s never one to complain. The bone marrow suppression from radiation has caused her rbc/wbc/neutrophil counts to approach an anemic/neutropenic level.
The radiation area has been extensive, T3 thru T11. Though primarily focused on T4-6 where the tumor presses upon the spinal cord. The radiation oncologist noted that they rarely radiate such a large area of the spine in one go. The other areas would have to wait. Yes, other areas. At the base of skull, T1, cervical, lumbar. And that’s just the spine. I’ll omit listing the other bones for now. The T1 area would be up next for treatment, as her fingers are tingling; but careful scheduling and calculation of dosage will need to be done.
Now that the risk (hopefully) of potential immediate damage from MSCC is mitigated, the more immediate risks would be compression fractures. Because the lesions in the spine are extensive.
On the bright side, the back/radiating pain prior treatment has subsided. The doctor did caution that since the tumor was extensive around T4-6, the radiation has primarily been palliative. And since additional radiation to the same area should be avoided for now, other methods of treatment will have to take place soon. Else it’ll progress again, and the risk of MSCC occurs again.
We’ve visited different doctors. It’s been interesting to observe them as they pull up her PET/MRI imaging, even on second/third consults. There’s an invariable pause, sometimes a slight purse of lips towards a corner, as they ponder how to start the day’s conversation. I wonder, if their internal processes are ever parallel mine for at least one instance, even with their experience. Which is to stare, process and resist the urge to swear; before taking a breath and proceeding.
I don’t stare at her PET/MRIs much anymore. I pull them up only when reviewing audio from a day’s consult, to be able to closely review the conversations with the doctors.
The areas in the lymph nodes, endobronchial (lung) and possibly thyroid that showed up on the PET aren’t being actively addressed yet. Since the reliance will be on systemic treatments to prevent progression. The docs have mentioned that though the likelihood is low, we cannot yet eliminate the possibility of the primary cancer being different; that is, metastasis from the lung or thyroid, versus the breast. The focus is first getting a biopsy.
A detailed liver MRI has confirmed what the PET had picked up. But the spot is “too deep” for it to be a good site for a biopsy. They are reviewing options for a possible bone biopsy. We’ll hear back this coming week, with a tentative bone biopsy scheduled for the next. Hopefully we hear of a go-ahead for the biopsy. There’s some tricky coordination as the biopsy will be at the second hospital we hope to move treatments over to. (The radiation treatment till date, and for T1, is at a different hospital)
This will bring more clarity to the decision regarding the choice of Seoul or Seattle for initial treatments.
We’re thankful for the spine doctor here in Seoul she saw for her back pain less than 3 weeks ago. He was curious enough to ask about medical history, then followed through with a CT, and then MRI to discover what we know now. Otherwise, we’d probably have found this out in a much more jarring manner. Via sudden progression towards paraplegia. Though I’ve tried to avoid doing so, I’ve asked myself the questions that are pointless-to-ask-at-this-time in the quiet of the night. How did all this evolve so quickly since her last check up? Were check ups effective? Why didn’t the breast reconstruction doc she saw back home in Apr investigate more, when she went to him regarding radial pain at the same level where the more serious spinal compression is? Why dismiss it as muscle strain? Especially since they clearly knew her history? Why didn’t the radiologist stare a little at the obvious spinal canal narrowing that can be seen in the survey set on the breast level MRIs taken then? Because his job at the moment was to look for other things? No one’s infallible, but this gives uncertainty as to which facility we should we seek treatment at if we head back to Seattle.
Digressing, the idea of medical tourism for full checkups at the end of vacations seem a good thing. Full diagnostics/PET/etc scans are incredibly affordable in many places. I’m no actuary, but the wandering mind thinks there’s probably a financial incentive for insurers to detect early cancers fast. However, there’s no incentive in the system to detect metastasis early is there? Since it’ll cost more for treatments till EOL (End-Of-Life)? Topic for another day, another time. Not now.
It is easy to yearn for a simple narrative. And one that is pretty. Like pink ribbons. Like the tidy stories given at one’s first introduction into the breast cancer arena. “Detect early, do X/Y/Z, feel good for 5/10 years and you’re cured”.
Alas, that is not our reality. Reality is nuanced. In early detection of breast cancer, few, if any, talk of the more complex narratives that will unfold down the road. Even less so, will anyone say a harsher sounding yet simple narrative to the newcomer, “Your breast cancer won’t kill you. It is the metastasis one day that will take you.”
I digress. Back to the present. Back to my beloved.
She will be getting fitted with a body/spinal brace by the orthopedic department this coming week. To help with possible spinal instability. If it looks too stormtrooper-ish, I’m going to put out a call for stickers/laminates, so you can help make it look more badass.
We like the oncologist we’ve met with at this second hospital, Samsung Medical. We will see her primarily if we stay on for initial treatments. Though she was surprised to see Annie walking, instead of being wheeled in on a wheelchair or bed. She came across methodical, and willing to explain, even at our second consult. Plus she’s willing to be a straight shooter; we asked her to be, and she was. Her treatment goals also appeal to us. That would also be a topic for another time, as that delves into the deeper questions, those regarding personal choices that straddle the fine line of prolonging life versus quality of life.
The days for now are about settling into a routine. Not dissimilar to the early chemo days a dozen years ago. For her: wake, eat, drink fluids, nap, eat, smile at me. For me: wake, cook, read, organize, cook, smile at her, sanitize/clean.
Summer in Seoul is a reminder how much more often one needs to clean shower areas, toilets, sinks, etc in warm and humid environments.
I’ve let care of myself lapse. I’ve lost weight and muscle incredibly fast. Need to get in some exercise this week and stay sharp; and to remind myself that a more sustained output is required this time round. And unlike the first time round, the inner currents of youthful invincibility are now piddly puddles. Remind me please.
We’re very thankful for the support, the actionable information, medical research, listening ears, practical support, laughter; and the knowledge that you are available to us to call upon for help.
For normalcy, we watch the Olympics, and be silly.
The ebb and flow of emotions occur of course. There’s laughter, smiles, and also the moments. In some of those moments, we hug, dance, and have a good cry. Characteristic of her, she’s more worried about worrying others, than about herself. Do feel free to infuse her periodically with joy, laughter and anecdotes of your lives. She loves it. She got really happy when she quickly solved a riddle a friend sent.
We’re looking forward to getting through whatever the first phase of systemic treatments await, and getting to the first segment “a new normal”. I wish for these segments to not only be pain free for her, but that they also afford her the ability to be happy, tick off boxes on the bucket list, and have fun times with those around her. And I really wish for her not to have to experience a vertebrae fracture ever, and if not ever, at least not soon.
Though we do not know how long this walk will be this time, there is no avoiding where the final segment ends. But we can choose how we’ll walk this path.
Thank you for walking with us. Be it for a portion of, or for the whole hike.
I do not remember much of the path taken a dozen years ago the first time round, just fragments of memory. This time however, it will be a walk to remember.