We set up this blog to help family and friends learn about, and keep up with, Jen’s fight with breast cancer. We also wanted a space to document and track everything for ourselves. If this is the first time you’ve visited this site, we know it might be overwhelming. We were overwhelmed, too! But most of all, we’re grateful that you’re interested in learning more, and might follow this journey. Read more about this blog.
Posted by Alex, age 16, to Instagram at 10 p.m. on Wednesday, Aug. 5, 2021, the day of his mother’s passing. Republished with permission.
For almost as long I can recall, Mom was sick. It was impossible for me to comprehend what was actually happening. And in many ways, that hasn’t changed.
Stage 4 breast cancer. That was the diagnosis ten whole years ago. Alongside a devastating prognosis, the uncertainty of what the next steps were was a nearly insurmountable blow to my family. But she pulled through. It took surgery, radiation, intense chemotherapy and perhaps a million thoughts and prayers, but it ended.
Until cancer reared its wretched head once again.
I’m still processing what I began learning about over a year and a half ago. I couldn’t understand. She seemed fine. She had lost her hair again, but she was still here. She was with us. We’d go out just for fun and get dinner or something. No problem.
She put a pause on chemo a few weeks ago. It was necessary. Her body couldn’t handle how aggressive the treatment was. But it seems like her body can’t quite handle what came next, either. She got exponentially worse.
At the end, I could no longer speak clearly with her. Eternally tired, occasionally delirious, and depressing every time. I didn’t get to say goodbye, really. I could have, but I was unconfident in her ability to hear it. It was so quick. I don’t know where she went so quickly.
She would always have something to say. A joke to add, a movie reference to make, some incomprehensible southern humor we tried our best to understand. She was quick-witted. She loved puzzles and brain teasers and board games and BOOKS.
My god, the books. She lived in them. Enough to bring down bookshelves. We know because it happened. An incredible collection she must have by now. She was a huge history buff. There are so many books left unread in her catalogue. We would always joke that she wouldn’t ever get to them. She’d just keep buying more and more books and not reading the ones she already had.
A good mom, she was. She always worried she wasn’t. She always wanted to know what was going on with us, asking us about our day and actually caring about the answer. A heavenly source of comfort for Kate, an eternal muse for Zac. It took me a while to realize, but we were really all she thought about. (Besides the books, of course.) I’m ashamed to have not lived for her as much as I should have.
Just several months ago, we would go to CPK to dinner, just for the hell of it. Go out and celebrate someone’s birthday. Or in me and Mom’s unique case, both of our birthdays. August 13 and 16. It was our time, every year. It was great.
Just a few months ago, we were at Olive Garden for my brother’s birthday. We all playfully and quietly sneered at someone who wouldn’t give up their seat for her, a woman with a cane, in the waiting area.
Just a few weeks ago, I would hear her and Dad watch a movie in the other room. She’d be laughing her ass off at some parts, or maybe yelling— literally, yelling— at some jumpscare I had also heard. I’d swing by before I took a shower and ask what it was all about before swiftly dismissing it as something I wouldn’t be watching myself.
Just two weeks ago, we were driving to the hospital for a routine checkup with her oncologist. On the way there, I played some of her songs in the car. Only this time, with a newfound struggle on her part. She was trying to sing. But she wasn’t able to move her muscles very well, including her mouth. Not only that, but she was struggling to remember the words to songs that were extremely familiar not too long ago. In that moment, an incredible melancholy filled the car’s cabin more than air.
The last days were the longest. It seemed like it had been weeks. It had only been five days that she was in hospice in our living room, hospital bed and all. With her was my dad, ready to take action on her every need the moment she had it. He was prepared to be spoon-feeding her cups of Jell-O between her constant naps, which in all likelyhood were riddled with nightmares.
Now it’s just going to be us and dad. A tiny house. A tiny, tiny, tiny, house. We lost Grandma not much longer than a month ago. That was its own shock and ordeal. There was six of us. Now there will be just four. Dad and three children. A tiny house.
But on that note of those children— Mom, I need to tell you something. I failed to get this out to you in time. I tried to tell you in that Mother’s Day card, but I’m unsure how well I did that. If I told you yesterday, I don’t know if you’d have heard it. So, I’m just going to leave this here— for you to read wherever you are.
I don’t know how you did it. Look at us. You did this. Three whole, incredible, beautiful, human beings. We squabble, sure. We, at times, aren’t exactly each other’s best friends. But look at us. Throughout your entire life you were petrified that you did it wrong. I never understood that. Even less now. You did so well. You did so well.
Some parents leave their children emotionally scarred and terrified for the real world. And though it is true, we are all woefully unprepared to move forward without you, I am convinced that we’ll grow and learn with you in our hearts, forever and always, as you always hoped you’d leave us. I truly don’t know how you did it. You did it while riddled with cancer and, at times, hopelessly depressed. It’s incredible.
You’re incredible. Once-in-a-generation kind of strong.
I know you wished you had more time with us, as we do with you, but let me try to calm and assure you that, even if we don’t feel ready, we’ll be okay. Thank you for working so damn hard. Thank you for being there so damn much. Thank you for fighting so damn hard. Thank you, because we never said it enough. Thank you, thank you, thank you. I love you. I’ll miss you. You did good.
And now, as I lay here, unsure if what I just wrote is even intelligible, I hope I got my messages across. I hope everyone now knows who she was. And what she was like. And what she went through, for us. You had no idea, but your world was better with her in it.
Whether you read the whole thing, or just skimmed it, or just the first and last paragraph, thank you for indulging me in this. If given more time, I would have written a shorter letter.
Hang in there, folks.
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.
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.
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.
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.
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.
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.
I’m home now. I was admitted to the hospital on Thursday, January 21. It’s taken me a few days to rest and feel semi-normal.
Because of chemo, I have to watch out for the usual symptoms. I’m supposed to go to the hospital if I have a fever of over 100.5. I wish I’d just gone the first time I’d gotten a fever. Fevers are a very common side effect of the chemo drug I was getting and I don’t particularly like hospitals, so I didn’t report it at first.
When I finally did report it, the natural first thought was COVID-19. So they cancelled all my appointments and had me come in for a COVID-19 test.
It was negative. My fever subsided. It took days to get my chemo schedule back on track.
Then I got another fever. And chills and the shakes and body aches. And when I reported it this time, my doctor was unequivocal: go to the ER right now.
I thought I’d be checked out, given some drugs, and get sent home. Instead I was admitted for the night. Then the next. In the end, I was in the hospital for 10 days.
I can’t remember ever being so scared, unhappy, lonely. FaceTime is no replacement for being at home.
It was a staph infection. And the first few days was spent trying to nail down how it stated. Respiratory or skin? Too many tests ruled out respiratory, the most common, so attention turned to my port, installed in the center of my chest to make chemo less painful.
If you recall, I had a port until I finished chemo back in 2012, but when chemo resumed, I had to have another one put in. The second port never quite…healed, I guess? The insertion site was always kind of pink and itchy, despite getting doses of antibiotic cream. Of course, I ignored it too long and paid the price.
My hesitation to just go in and have someone look probably allowed the infection to get worse. It took quite a bit of testing to even figure out which bacteria was in my system and then it hung on against the antibiotics like a champ.
Meanwhile, they were worried the infection had found refuge in my heart valves, which is apparently something staph does, which would be bad news.
Fortunately my heart looked good. But at this point, they knew I was going to be on antibiotics for the long haul. They had to clear the infection, though, in order to put in another IV line to deliver the medication I’ll be getting for the next six weeks at home.
By the way, it’s an IV, but it’s called a PICC, and basically it’s a pipe that goes from my arm right down my middle and into a major heart valve, so the antibiotic can diffuse in my blood correctly.
Ryan went in to get trained on administering my antibiotic and handling my PICC, which given where it goes is not something to be careless with. Now he changes the antibiotic “bulb” every day, fitting a shower between connections, waterproofing my IV each time.
He started drawing eyes on the bulbs to cheer me up. Then he bought some googley eyes from the craft store. We’ve decided to name the bulbs “Cyril.”
We’re on Cyril the Fourth now. We’re going to meet Cyril the 42nd when this is all over.
Hospitals are the worst. There’s no way around it. Nurses rule the world and should all be sainted. Health care is a fundamental right. But hospitals, as a concept? It is impossible to get any rest in a hospital.
There was a schizophrenic patient who would start screaming and cursing precisely at 7:30 every night and keep going until he felt like it. One of my neighbors talked loudly on her phone all day as if she was poolside at the Halekulani, treating medical professionals like cocktail servers.
All of the staff were extremely competent and wonderful, though. I wouldn’t be here if they weren’t.
So everywhere I go for six weeks, I have to carry around a plastic ball tethered to a spot in my heart that receives a steady dose of medicine. I don’t plan on going far anyway. I was hoping to get COVID-19 vaccination, but that might have to wait until the treatment is over.
Fortunately, my husband, daughter, youngest son and mother in law are getting vaccinated.
My kids are awesome, my life force. My family is my sanctuary. More on them later.
Some good news: radiation went very well. I was noticing increased mobility by the fourth treatment. I hardly remember the pain now. I didn’t end up needing any of the stuff I ordered and don’t even bother with the parking placard. I feel like it’s good karma to save it until I truly need it.
I am now the proud owner of a walker, a cane, and an appointment to get a handicapped parking placard.
About a month ago, I had a weird pain in my leg that felt like sciatica. I’ve had sciatica on and off for a couple of years and it’s no big deal; usually some ibuprofen does the trick, but after a few days the pain was brutal. I couldn’t get up the stairs in my house without help. Even moving around in bed took forever because my leg hurt so bad.
Since the cancer in my bones is an issue, we knew we could’t fool around with it, so in short order I had tests done. I had an X-ray on the same day as my chemo appointment with no waiting and left with a ton of paperwork.
I was under the impression that cancer patients can only get radiation therapy once. It turns out I just can’t ever get radiation on my chest again, But I am going to get a short, easy course on my left leg, just above my knee. Once a day for ten days. In and out in five minutes, easy peasy, no Stephen King horror movie skin under the bandages this time.
I have been feeling better the last few days, but am still hoping for even a little bit of relief, since it comes and goes.
It’s scary to feel helpless at this age. I’m not young, but I’m not close to surrendering. It’s not even an option. I still have a family. I’m not even fifty yet.
Sometimes I’ve felt like my doctors aren’t entirely forthcoming about my condition. This is one of those times. I didn’t get to see my X-ray, and the words my oncologist uses now seem vague, like what he had to say might seem too frightening. My bloodwork has been improving, so the news of a growing tumor is confusing and upsetting.
If I didn’t have my family, I don’t know where I’d be.
My youngest has been driving me to appointments when it’s been too hard to drive. One day, as we were driving back from an appointment and I was feeling particularly sorry for myself, he said, “My friends all think you’re amazing. You’re the strongest person I know.” Whenever I think I’m being wimpy or useless, they’re around me, lifting me up.
This was a banner weekend.
It seems so long ago now that we were daydreaming about the time when our six- and two- year old children would be graduating, one from college and the other from high school. Who could even have even thought then that we’d be in the middle of a hundred-year pandemic that would severely delay or alter graduation day for both of them? Zachary was able to walk in a “drive-by” ceremony, which was, all things considered, surprisingly efficient and even kind of nice. He wasn’t keen on participating in a ceremony or a party, wanting to save money to go on a trip to visit friends in the summer. The drive-by ceremony was a nice compromise. Meanwhile, Kate will have a ceremony in December, hopefully.
I counted on being utterly ecstatic this weekend, and I was truly happy, but I’m also very scared. I have a biopsy of my liver on Thursday. I’m not afraid of the procedure itself, but of what it’ll tell us about my future. I am truly lucky to have lived to see this last weekend. Just twenty years ago I would have succumbed by now, so to have made it is testament to medical science.
My hair is falling out again. What I’ve read about my new treatment promised that my hair would start “thinning”, but it’s a bit worse than that. It’s not coming out in handfuls like it did before. Still. It’s depressing. I’ve been looking at wigs on the ACS website, contemplating life as blonde.
Stay-at-home orders are still technically in place here in Hawaii, with beaches slowly opening back up with restrictions. In the past two months, we have only left the house for grocery runs and doctor visits. We really, really needed to get outside, if only for a little while. We headed to the west side, to Poka’i Bay. It was a lovely day. The ocean water was, as always, healing.