mom

By my count, there have been about five times that I thought I would have to write this post. This is both longer than I thought I would be and so, so, little time than I thought I would have.

Hi. We haven’t met. My name is Kate. I’m Jen’s eldest and only daughter.

To cut it straight to the chase, she doesn’t have long left. She’s been fighting almost 10 years. This week, we start home hospice. I’ve known this would be coming for a decade now but I find myself listless. In shock. I don’t know how I go to work or begin a new semester or go on with my life tomorrow, even though I know full well that I don’t really have much choice. If my mom knew I was even thinking about dropping out of paralegal school because of her, she’d be horrified.

I was 14 when she was first diagnosed. I remember the day clearly still. It was my first day of spring break. We were gonna go shopping. She got a call during our drive to the mall from the hospital, telling her to come immediately.
I’m 23 now. She lived long enough to see me get my college degree, something that her doctors nine years ago thought was a long shot.

She’s told me a lot of things since her diagnosis. She’s said repeatedly that she wants her funeral to be a party. That she did not want to be a “vegetable” under any circumstances. She asked my brothers and I constantly if she was a good mom.

We’d always give her the obvious answer. She was the best mom I could’ve asked for. She has never once doubted me. Once it was made clear that I wasn’t gonna be a rebellious and terrible teenager, she trusted me to make my own decisions. Even when I was a teenager, she never talked down to me.

I want more time. I’m greedy and got five years more than they said I would and I want more time. We had things we wanted to do. Just a month ago she was fine. We wanted to check out this Taiwanese restaurant. We were both itching for a trip to the beach. We were gonna go to New York. I want more time. I’m struggling to remember our last conversation where she was fully coherent. It was probably complaining about my food service job. I thought I’d be doing that at least a hundred times more.

If I could ask for anything, it’d be one last conversation. She’d be awake, and could understand what I’m saying and reply in kind. I don’t know how much time I have for whatever higher power that exists to make it happen. Right now, as I type this, none of those things are true. I’d say she’s an amazing mom. My best friend. And I have no idea what I’ll do without her.

the threshold

Today is not the day that Jennifer lost her battle with cancer. She never stopped fighting. Today is the day, however, that we, together, surrendered. The damage is too great, the returns too slight, to continue.

Jennifer fought harder than even I knew. I only just learned, as her oncologist transferred our case to a social worker on our way to hospice, that her last round of chemotherapy was aggressive, even dangerous, at her insistence. “I want to do whatever it takes,” she told them. And she did.

She stood firm, brave and optimistic, as cells and chemicals clashed. And the all-out assault on the cancer cells scattered throughout her body took a toll, flayed her nerves, battered her brain. It was the doctor, not Jen, that ordered a stand down three weeks ago.

The hope then was that she would, once again, rally back for another attempt. She’d charged the hill so many times before, getting to savor the glorious view from the top. But the haze lingering over this last battlefield didn’t dissipate, it thickened instead. It darkened and roiled. We couldn’t see the enemy. We couldn’t see each other.

The last two weeks have been so hard, and yet, so priceless. Every so often the air would clear and Jen and the kids and I could all see each other, and huddle together, and talk, and even laugh.

And when she would fall back, exhausted, her body heavier and heavier, her mind launched skyward.

Then I could sense Jen’s spirit soar and twirl, traveling seamlessly across time and space. Every few moments she’d send word back to our world through whispers and mumbles. She was in school. At the beach. She was in Florida, California, New York. She was hiding in a castle, she was late for a fancy dinner, she was putting her grandkids to sleep, she was with her high school friend.

Her epic streaks in language learning apps may have lapsed, but now she transcended language. Glasses were rings. Towels were pillows. Her blanket was a cloud. Many, many things were books. Her pills were Buffy and Angel. Sometimes she’d get frustrated, but sometimes she thought it was as amusing as we did.

I tried to write everything down. A travelogue of her mind as it skipped across planes of existence.

Sometimes she would wake, suddenly and instantly afraid. A few times, she was inconsolable, remembering again that my mom was gone, or hers. Once she was so, so mad at me, she hollered with a raging voice that I had never heard before. But then she’d forget, and fall peacefully back asleep.

The worst moments, though, were when she was fully present, clear eyed, just a moment or two a day, when she knew exactly where she was, and exactly what was happening.

But she could be giddy, too, especially yesterday. She wanted desperately to get married to me, and she reminded me that I promised her I would. She rediscovered her anniversary ring and was delighted to be wearing it.

She thought the kids were hilarious. She thought the cat was hilarious. She suddenly understood the punch line to a hundred jokes that she just couldn’t tell us. Even though we had a horrible day of falls and scrapes and bruises, even as we cried, we laughed.

She just laughed, just now, again, in her sleep. It’s my favorite sound in the world.

So, we begin hospice care. At home, which was her wish, put in writing a year ago at a palliative care meeting that I thought was premature at the time. Now I’m so glad to have her wishes in black and white, as neither of us are in our right minds today.

Some people, I was told, stabilize and regain strength in hospice and even return to treatment. Some people live for weeks, even months, in hospice. Anything is possible, especially with my amazing Jennifer, ten years past her Stage 4 breast cancer diagnosis and five years past what were then optimistic estimates of her remaining time with us.

Whatever time is left, Alex, Zac, Kate and I will stuff to the gills with big fat messy love.

I am so lucky, so blessed, so grateful for every one of the five million bonus seconds our family has had together since 2012. We need them all lined up solidly behind us now to face what’s ahead.

whew

You would not know it from our smiles, but today was the hardest day we have ever faced as a family, and that I have faced as a husband. I have no flowery words left in me. Even after twenty seven years together, Jennifer and I are now in truly uncharted territory. She did tell me today that she wanted to get married. I told her yes. A thousand times yes.

doctor says

I was able to have a long conversation with Jen’s doctor. Lots to worry about but I gained confidence that he is on it and has a plan.

MRI shows brain clear. CAT scan shows possible worsening in jaw (we’ve already been tracking). Liver developing nodules but not swelling, may be cirrhosis from the chemo. Need a closer look. Blood tests improving, but still elevated markers for cancer, high calcium (cancer in her bone), trending worse.

Bone scan next week. Also adding MRI of liver and MRI of spine and full body PET scan. Trying to rule out emergency condition, mostly – tumor pressing on spine, blood clot, etc.

Cognitive issues are of course my main concern. MRI didn’t help. Maybe calcium or dehydration or medication. And ‘chemo brain’ is common. But this is a big change over three weeks. Again could just be long-term chemo side effects (nerve damage), could be cancer related, could be her spine. Could explain everything as nerve damage, but just too many things going on for one explanation.

“If cancer is progressing, it’s not that we don’t have any treatments left, we’re down to not too many options. We need her to tolerate treatment, and her liver to tolerate treatment. I wouldn’t give chemo to someone in the shape she was in the last time I saw her. It almost feels like our best hope is that we don’t find anything specific, but we give her body a break, and see what recovers. But we also might not have a good answer to whatever we find.”

Basically, it’s a mystery, and he can’t guarantee things will get better, but not all signs are bad. The physical stuff is way less stressful than the mental stuff. If Jen’s ambulatory days are over, that’s surmountable. But today she forgot how to use her iPhone and needed help eating.

scans and tests

Jen was able to knock out both an MRI and CT scan today, leaving only ‘full body’ and ‘bone scans’ late next week, but they want to push those up as well. But, we will have results for today’s scans and blood tests tomorrow, and maybe some answers. She also got another two pints of fluids, and her BP was perfect and her pulse just a little high. The nurse today was encouraging and optimistic and thought a lot of what’s happening is severe dehydration related.

She seems to be getting stiffer and stiffer, though, and I just noticed tonight her legs seem swollen and tight, so I messaged her doctor. She fell getting into the car today but, my back be damned, I got her in on my own this time. She spent the day in a wheelchair and the friendly nurse recommended one for us from Amazon.

What I realized today is it’s not balance, but kind of her muscles flipping off and on randomly, like the spasms she gets in her sleep. So she’s standing but then everything goes slack for a second and that’s enough. It was only when I watched her try to use her phone that I realized that was more what was happening, because she couldn’t hold it steady for more than a few seconds. And, of course, that sounds more neurological. The MRI is to look more closely at her head, one of the two ‘hotspots’ she has (the other being her liver).

What’s most concerning remains her cognitive abilities. On one hand she remembers every nurse’s name and they make small talk. On the other she forgets what’s happening sometimes or where she is (she thought we were driving in California today!). Oh and she said she still worked at HIS and that they gave her plenty of time off. Mixes up words, enters halfway through conversations in her head. Now she’s self conscious too and saying she’s losing her mind or getting dementia. She’s definitely in there but the view gets pretty cloudy. I’m trying to write down as much as I can, just in case.

She wanted a Whopper for dinner, which was nice, even though she ate about a quarter of it. Asleep already, but it was as long a day as there could be for her, lately. Tomorrow should be spent resting, and catching up with the doc on his findings, unless they find space in Diagnostic Imaging again.

it pours

Sorry to be so quiet. For my mom, we are still waiting for Mililani to confirm cremation and request the death certificates. A lot waits in limbo until then. Hawaii National Bank did get in touch about her accounts. I put money in her DDA (no access until paperwork) to cover this month’s payments.

The real challenge has been Jen, who for lack of a better phrase has taken a turn lately, pretty much just as my mom passed.

Jen has been sleeping almost constantly, which is not that new, but also frequently disoriented and confused. She’s unsteady on her feet and has fallen a number of times. Sometimes she’s lucid but sometimes she’s in a daze, like she’s heavily medicated.

I think I mentioned this started as her reaction to her chemo being so poor — neuropathy and other symptoms. The doctor has adjusted her meds, and now they’re ordering a number of body/bone/CT/cat scans as well.

I took her in for a bandage change that takes 15 minutes today and we were there 5 hours. Unscheduled X-ray because they thought her PICC line was pulled out a bit (it was fine), but once they got going they kept taking blood and giving her stuff by IV. Dehydrated, low sodium, low magnesium. Though she was lucid in the morning, in the hospital she was groggy and wobbly. Couldn’t name the day, month, or year. Needed help to get out of the hospital bathroom.

Doctor will call me tomorrow. Moving up her scheduled scans now because they really want to know what’s going on inside. Though now I’m thinking dehydration could maybe have been the main issue. I hope so.

Then! She fell in the driveway and I couldn’t help her up! I had to get all three kids out to pull her to her feet, to keep her from trying to crawl to the door. Ugh. They were all totally great though. We got her upstairs and hydrated and medicated. Sleeping now. Whew.

To backtrack a bit…

After her initial diagnosis and treatment (surgery, radiation, chemo) ten years ago, she was actually declared cancer free, and had an almost indefinite amount of time, apart from average estimates. When she was rediagnosed and became metastatic that started the timer again, I think I was given ten years as a possibility. But MBC is not curable and treatment from then has been about slowing cancer spread and maintaining comfort.

Since mid last year they’ve been trying different chemo mixes as her numbers vary as well as her comfort and pain level. I think we are on number four. This one was very aggressive. She was very uncomfortable, her extremities were numb, her nails falling out. So around the time my mom passed we hit pause for her to recover before trying something else.

It is in this period that she started to get lethargic, but that wasn’t a surprise. But we kept waiting for a rebound but instead it’s been up and down. Lucid sometimes, disoriented sometimes. I think she’d been pretty lucid at the hospital up until now, but I emailed the doctor my observations and they ordered scans of all kinds and dialed back her medication. Definitely this time they saw her in her groggy state and want to speed things up.

They thought it may have been her anxiety med and took that out. Her anti-nauseal was also switched. This was only Monday. And her low appetite and dehydration was also seen as a factor. So I’m hopeful we’re just going through an adjustment.

If this is something long term it definitely gets very hard.