Hello, it has been awhile. Will back fill sometime. Here’s a long overdue update.

Just five more steps to the second floor of the house. Pain and numbness overtakes her right leg and she lowers herself down. And she crawls the last few steps.

This was a year ago, entering into the year end holiday season of 2018. PET and MRI scans were moved up, we entered back into the mode of near daily medical appointments. We always read her spine MRI reports with a wry smile. Some radiologists would write in detail, which I feel is a reflection of diligence since in the peculiar medical system, these doctors do not get to follow the same patient. More often than not, only exceptions are written and there’s a generalized paragraph stating “extensive” or “widespread” metastasis with pathologic fractures. This time, other than the increased activity from liver lesions, there were lesions in the lumbar spine expanding into the epidural space. The latter the cause of messing with sensations in her leg.

The second line of treatment did not last long. Six months or so. You always hope for better, yet accept today as it is. The next line will invariably be chemo of the oral kind. But the first and second lines did give us time for some good memories and little highlights.

In the autumn of 2017, we road tripped to Yellowstone, including some nights in a tent, albeit now a giant one. In the beginning of 2018, we burned up all the points we had and made a long trip to Australia sitting in comfy class, to meet up with family in Melbourne. While there, we explored, took trips to the ocean and local state parks, managed some hikes, ate well and also visited Tasmania. 2018 also allowed for short visits to good old places like Squamish, BC. Late autumn of 2018, we traveled to Taiwan and Singapore to see our folks. Oh, the trips weren’t all the easiest. Especially macgyvering the transport for needles that need refrigeration and timing sufficient monthly prescriptions. There were unwelcome surprises; like in Sep 2018, we awoke one morning before a PET scan to the news that we didn’t have health insurance. It got canceled. That did get solved, but a story for another post; as well as other historical updates to later posts.

And oh, there was fatigue. From the cancer and treatments. It slowed her much, but didn’t stop her. In the early autumn of 2018, we went to the North Cascades and decided to do a loop hike. One that you could normally do in say 3 hours. We gave ourselves six, since starting at altitude with a low red cell count would pose a challenge. Fifteen minutes into it, her vision blurred, she felt like passing out, we sat down. She choose to push on, I panicked a teeny bit inside as this was a loop hike. There comes a point only going forward is the shorter path. I didn’t want to make the call to bail. If this would become a last chance in life to experience a beautiful alpine autumn, when do you make the call to bail? We repeated this dizzy-sit cycle five times in the next two hours; reaching a third the way. These moments were also learning moments for me. It made me think of the days when I’d be charging up a hike to get to a climbing crag, passing some day hikers bent over on the sides panting. A biased question flashing in the subconscious, wondering why people do not take care of their bodies. Now however, you learn that everyone possibly has a story.

It took till sunset. But it gave us a flashback to the times we backpacked much. In was a beautiful day of rugged peaks filled with color from larches turned gold in the autumn.

They do permanent tattoos for radiation alignment here versus the temporary ones in S Korea. We could tell they were slightly worried about getting radiation field records for her prior radiation treatment in Seoul (this is so the planning can be done not to overlap), and whether it had been some backwater old device with a broad field. After we produced the records, I worried a little about the word that spread back to us… the techs were wowed that she had gotten the latest state of art options in Seoul. Curious, we asked, weren’t we getting the same radiation type now? No. Medical insurance doesn’t approve highly targeted radiation treatment, until other old methods are performed first; which unnecessarily affects other organs more. Great. Of course the justification is that statistically, the treatment is wasted on patients with “shorter timelines”. Still. 5x the cost for crappier. Our system sucks. Anyways, radiation field would include pretty much all vertebrae below what she had already received prior; so all lower thoracic down to all lumbar vertebrae. We think about and then choose not to think about the lifetime cumulative risks to the spinal cord anymore, this is all palliative and pain control. The question is whether radiotherapy is still an option if metastasis recurred soon in prior-radiated areas.

Wasn’t the smoothest month, Dec 2018. It ended on New Years Eve with the last dose after two weeks of radiation. The nausea was challenging. Some self centered nut entering the treatment waiting area effusing pungent perfume didn’t help anyone either; though there’s a new sign posted about that now. We had to miss visits by friends and holiday gatherings. She was blanketed with love from friends that brought meals. Well, mainly soup that she could keep down. She managed to control her nausea Christmas day of 2018, and we attended our good friends’ wedding by Snoqualmie falls, a nice small intimate affair.

Always grateful for the grace that blesses us, Jan 2019 started off well, and on our “January wedding anniversary”, her nausea held off, and we got to go to town and enjoy the Lion King musical.

The third line was oral chemotherapy. Capecitabine. Since it was taken orally, it offered some convenience. The primary side effects unique to this drug, other than the usual chemo ones, are redness/blistering/burning sensations in the hands and feet. Like getting a sunburn, without needing the sun. Hers did turn red, and she felt on fire often. And her nail beds turned dark. She did begin to manage. And we even rolled the dice and visited the climbing gym and she climbed up to 5.9. Her feet and hands were sure afire after; but it made her happy. And like her doc had commented, the only reason we’re doing all this treatment is to live life. We keep learning a lot through all of this medical stuff. Especially to separate wheat from the chaff. To not waste time on hyperbole and misinformation. To not lose sight of truth when you can’t see clearly. To grow nevertheless. To have faith and peace in today, regardless of yesterday or tomorrow. She grows without forming the bad habits I do; I need to be mindful of my personal growing impatience when I encounter BS. Something to adjust on my part.

2019 in general was more mellow, no big trips. We spent a little more time with friends and connecting with others whenever we could; and we appreciate the time spent with all of you. Annie really enjoyed the choir she joined, and they put up an awesome production of Hunchback of Notre Dame in late spring. We attempted to do a hike late summer, but the fatigue and blurred vision was worse this time, so we bailed a mile in. I am grateful for the hike last autumn, that she wanted to complete it. That will likely be the last time she walked in the beautiful alpine terrain of the Pacific Northwest.

In Sept 2019, she had a PET scan and things were inconclusive. Some areas had improved, some not, particularly in the right portion of the sacrum. A toss up. The decision was made to stay with status quo for treatment.

But we know the nature of any state of stage four cancer, don’t we? Ephemeral.

“My groin is on fire,” she sings to the tune of Girl on Fire. Laughing and grimacing at the same time.

That’s how it started at the beginning of the month, Dec 2019. First numbness, then on fire, then pain. After the second week of the month, the crotch jokes stopped. Replaced with a sudden doubling over, crotch grabbing, curled to fetal position type of pain. Sudden, excruciating pain. Given that she has a high pain tolerance, it was obvious when it was bad. This would turn into more pain than she fist felt with spinal cord compression at the start of it all. This is the first time whereby upon being asked by a doc to describe her pain level when the flare up happens, she had no 1 thru 10 reply, just tears. Though she did manage to grin and state that it might not be as bad as childbirth, since she does not have that reference point.

And so, déjà vu. Just like a year ago, near daily appointments happened, MRI scans were brought forward, tumors were found to be affecting nerves again, this time the nerve roots, in the sacral region. Her T3 vertebrae had collapsed further, which cemented the fact that I did not grow a tiny bit taller. There was some joy to celebrate as sudden stabs of pain were alleviated by figuring out the right combination of pain meds and steroids. Accompanied by the joy of constipation induced by pain meds; and so more things to consume for that. How messy is the cycle of medical drugs?

Similar to last year, radiation has began; so she’ll now have had radiation to the complete spine. And once again New Year’s eve was spent at the special spa. Where music played, everyone spoke in gentle voices, and you got to lie down. Except you also get nuked. This time, it would be three weeks of radiation. The appointments are brief, and hopefully there will be no nausea (none yet) this time, since the field does not include the abdomen. It has been good so far, and just like last year, she will start the new one with less fatigue; and good spirits on our part. Well, except when  speaking with insurance companies about the inefficient things that occur on the turn to a new year. Nevertheless, we’re rolling with it all.

The 4th line of treatment will be determined soon after radiation. Slightly over three years ago, on Sep 1 2016, we had the first line. If you asked us then if we’d imagine ourselves here three years later, you may only have detected an unspoken glimmer of hope, but the honest answer is no different today. Whether winter is coming or is already here, we choose to live our moments today. Whatever they may be. Because time too, is ephemeral. And I just wish her more love than pain in every present moment. And likewise to our friends and family, we feel blessed by your friendship and care, and wish you happiness and love in the new year and decade.

Time is
Too slow for those who Wait,
Too swift for those who Fear,
Too long for those who Grieve,
Too short for those who Rejoice,
But for those who Love,
Time is not.
~ Henry Van Dyke