So, feeling very close to death and actually being very close to permanent complete disability right in my very early 40s made me analyze my life a lot since everything happened in October. And then the last three weeks have sort of been like constantly drowning.
But, also, it's only been 3 weeks? Jesus Christ.
Last time I jumped on here I was thinking life would go back to what passes for normal for my (insane) family. I had a genuinely lovely Christmas and New Years with my local relatives. I let them drive me crazy and yelled at a few who were trying to wait on me hand and foot instead of forcing me to get on my feet and use them. And while I was wrong about Christmas - I was fully independent and on my feet without a cane by February.
All during that December/January holiday season lots of people flew in from out of state (other relatives and friends) to see me and we had two months of family visits and nice dinners and just reconnecting since I was finally fully back home.
I have never been more grateful for my stupid ass falling down a flight of 25 concrete stairs at 19 years old (and then not immediately going to the hospital) then I was by the time the end of February rolled around. That accident - and the subsequent final consequences this fall and winter - meant that a LOT of relatives came to see me and therefore also got to see my Mom one last time while she was still all herself as a result.
Now Jump-Cuts exist for a reason. So I'm going to put one. The post will them probably be graphic and an overshare in places. But, I have a tumblr not a therapist and I spent enough time raised around my Mom's parents that I may have absorbed their "suck it up" attitude towards therapy rather then the current generation's "everyone's got a diagnosis" attitude. This tumblr is also the only piece of social media that people I'm related to don't have access to and I needed to write it all out to possibly finally process the fucking hellscape that has been the last few weeks.
So you know, trigger warning or whatever for cancer and death and all the horrific reality that's involved there. If anyone actually selects "keep reading" I'd be shocked but there ya go so I don't get yelled at for not warning or whatever.
If you do nothing else - answer me this - are you an orphan if you're over the age of 40?
February 26th.
That is the day I knew 2026 was going to be infinitely worse then 2025 had been. And in the last quarter of 2025 I wasn't certain I'd ever walk again. So that's saying something.
Now, in some insane coincidence, this has never been a good day for me in general.
Because, wanna know what other fucked up thing happened on February 26th? In 1994 that was the day my father died of pancreatic cancer.
Well, 2026 was going to double down on that day for me with parents.
That's the day I found out without any question (despite what her oncologist was insisting) that my Mother was going to die - and probably fairly soon - regardless of the good, steady fight she had been putting in since 2021.
Seemingly overnight my Mom went from working, riding her bike and cooking gourmet food in our kitchen to her getting crippling abdominal pain and gas whenever she ate anything that wasn't liquid and barely being able to walk ten steps without having to sit down.
Oncologist moved her PET scan up to the end of February, specifically February 24th (rather than April when it was scheduled). On the 26th we would go back for the results of that scan.
The scan showed that her cancer had gone from the insanely long term weirdly stable 'only has infiltrated 5 lymph nodes' it had been since late 2023 (after the top right lobe of her lung was removed - basically all but eliminating the cancer in her body) to being located in 4 spots on her liver. Also, still just those 5 stubborn lymph nodes.
She wanted to discuss hospice care while she was still doing "reasonably okay" (cause the liver is bad news) so we didn't get blindsided by anything. However, her oncologist told her she was still a candidate for full treatment as it was only 4 "small spots". She somewhat reluctantly agreed. Probably cause of me.
She started a cycle (1 day, every 3 weeks, for 3 months) of some immunotherapy bullshit on March 20th (the earliest they could get her on the schedule I guess) that I could tell was not working by the time the 2nd session rolled around on April 2nd. Simply put - her neoplastic fevers ('tumor fevers') weren't going away. Usually, whenever she starts a new chemo drug within a week of treatment those fevers go away and we get a few months to a year of everything being stable and maintained. In fact, those fevers are usually our red flag of "hey this drug has run it's course." This time, rather than going away, they were getting worse to the point that I was being bitten at 5am trying to give her liquid Tylenol as she wasn't capable of swallowing pills when she was that out of it.
Every time I said something to her oncologist he told me 'you need to give it the full 3 months of the cycle to see if it is working or not'.
Well...funny enough...I was right. Didn't need any kind of M.D. to see that long before the 3 months were up.
Between the beginning of March and the 3rd week of May she lost 45 pounds and "finally" after 5 years had started to lose her hair. And (bonus!) was using my wheelchair and walker depending on the day and how far she had to move.
They didn't even wind up needing a new PET scan. She had to go to Sloan Kettering's symptom care clinic after one of her tumor fevers passed 103 and wouldn't break AND her belly had bloated to the point of looking 6 months pregnant. They did a CAT scan of her abdomen and pelvis to check for a bowel blockage/infection and it showed that instead of "4 small spots" the tumors were now all over her entire liver, in her spleen, in the lower lobe of her lung and possibly starting in her spine.
She tells her oncologist that "she's done" and instead he asks her to give him 1 more round of treatment on 2 new drugs. That it shows great promise in patients with her cancer but they would be 'rough' and she would need a few weeks to try and put some weight on first before we started. She agreed. And I couldn't say anything otherwise cause he had just told us that she wasn't terminal - despite what it might seem like from the scans. So I was still in that purposefully oblivious hopefulness.
Memorial Day weekend she got to see a lot of the family again out in Long Beach where my Aunt has a house on the beach - including my cousin's kids (who she treats like grandchildren since I never spawned). And then kind of just floated through the next few weeks. She read a lot, forced herself to drink ensure since it didn't make her as sick as regular food did and watched NCIS a lot (which should have been a clue being that she hates that show - but it's also 'mindless' and doesn't require focus to watch).
I worked from home the majority of the time starting in April - only going into the office for a few hours a week at that point. I think my boss knew and processed it before I did because she told me to just pop in "when you can".
Mom started the new drugs on Wednesday June 17th.
Thursday June 18th she was back at Sloan once again looking super bloated and in the kind of agony that has someone barely able to breathe. Turns out she had a massive clot in her hepatic (liver) vein from 2 tumors forcibly narrowing the blood vessels and causing a blockage of sorts AND the start of a minor bowel blockage. They sent her to a local hospital to deal with the bowel. And told us to follow up with her hematologist regarding the blood clot. Because Memorial Sloan Kettering, despite being a cancer hospital, does not employ hematologists at their two Long Island satellite offices. We would have to travel into Manhattan every time we needed an appointment - so instead she saw an outside physician.
See - the liver helps with digestion. It's basically the body's Britta filter. Everything goes through it or it releases enzymes to help everywhere else. If it doesn't work right then you don't process meds correctly (including chemo drugs ironically) and you definitely do not digest food properly. Combine that with what chemo does to your gastric system in general? Very quick onset bowel blockage.
The local hospital very much didn't want to deal with the clot or the chemo or the infection risk because of the chemo and literally just poured some hardcore laxative down her throat and sent her home once she "had a bowel movement" (ie: diarrhea...that wound up lasting all night and dehydrated her).
To reiterate the date of June 18th - in another horrific twist to my reality - this is the night she also point blank told me "I am done. I love you but I can not do this anymore."
I took her to her hematologist's office Friday afternoon, June 19th. And Jamie, the doctor's Nurse Practitioner, took one look at my Mother and actually said, "Nope." and just hooked her up to an IV of fluids with an injection of morphine and called an ambulance. She had seen the radiology report regarding the clot but hadn't physically seen my Mom since February and was genuinely horrified that no one had admitted her to a hospital due to the weight loss in and of itself.
Friday June 19th - Monday June 22nd she basically just slept in the hospital. Wouldn't talk to anyone, myself included, wouldn't watch tv, wouldn't eat, wouldn't take drugs that weren't IV. Just kept insisting that she wanted to be put on hospice and she wasn't doing it anymore.
Tuesday June 23rd was spent getting her set up with Good Shepard Hospice (we're Catholic - even if slightly lapsed - and they have excellent patient care as we experienced with my grandmother back in 2017/2018) for in-home hospice care. I also spoke with the funeral home every member of my family that lives on Long Island have used since we started moving out here from Queens in the 50s and got some initial price quotes - not expecting to need them for a few months. (side note - dying is expensive)
Wednesday June 24th she came home at around 5pm - after the hospital bed and some supplies had been delivered - wide awake and talking and super pleasant to be around. And I was like "holy shit. The nurse was right - sometimes just getting out of the hospital makes things better. Great."
Thursday June 25th - again she was wide awake and chatting with me and drinking juice and iced tea (rather then just water). And then the hospice nurse came over to the official intake and said point blank to me as I walked her out to her car, "I don't bullshit my patients or their families. You should probably get your relatives and friends over the visit tonight and prepare yourself. This is probably her last rally."
Friday June 26th she was barely awake when I gave her a bath and changed her. Gave her the few meds she still was taking (blood thinner injection, gabapentin since you can't cold turkey that, and pain killers) and she dozed off and just didn't wake up.
Friday June 26th - Saturday June 27th I spent every 4 hours putting a 1mg dissolvable morphine tablet and every 8 hours .5ml drops of lorazepam under it as well. I cleaned her up every few hours, changing what didn't technically need to be changed since she wasn't eating or drinking but dignity and hygiene is a thing everyone deserves
Sunday June 28th - a new hospice nurse came by at 10am and did an assessment. She told me my mother was "actively dying" and it was probably going to be in the next 24 hours. She called the on-call doctor who increased the morphine to 2 tablets and switched her to the dissolvable lorazepam (from the drops since she wasn't swallowing or making saliva anymore) every 4 hours.
While the nurse was there my cousin who is also a nurse (was in fact an oncology nurse at Sloan 3 years ago before she got fed up with some corporate bullshit) showed up with a bunch of groceries for me and to visit my Mom. She basically turned around and left and said she'd be back in a few hours - she was going to get her brother and his wife and kids who were visiting for the 4th of July week and her mother - because she recognized the signs too.
They didn't come back until 7:15pm - when she said "a few hours" I thought she meant like 2 not 8. And at 7pm my Mom had started agonal breathing.
The kids (6 of them between ages 2 and 13) were super freaked out but their highly religious parents (they go to old school latin mass down in West Virginia where they live) made them sit with my Mom for a few minutes each and pray for her. At this point I wanted everyone out of my house because I kind of wanted to be alone when it happened. I was holding it together by a thread - as I am not an "emote in public" kind of person at all. I take after my Dad's side of the family way more in that respect. My cousin (the nurse) had showed back up with an open bottle of wine and a full hydroflask of wine and was basically drunk "because my aunt is dying!" and was sobbing all over the place.
Ironically, this gave me something else to focus on and I was able to instead shuffle them all out into my yard by 7:50. I could hear them still sitting on my patio and the kids running around the backyard at 8:05 when she stopped breathing.
I waited about 20 minutes and just sat there kind of numb - stupidly "just in case" and to make sure they had all left before I called the hospice team. The house was freezing cold because 2 days earlier they told me to make sure to keep my AC pumping at it's coldest setting because a) it helps her breath and b) morbid as it may seem we were having a very hot few days and if she passed overnight and I was asleep, I would want the house cold. I feel like I blinked and a nurse got there but it was actually more like a half hour - she officially pronounced my Mom dead at 9:18pm on Sunday June 28th. And destroyed the medications the hospice had provided while I called my uncle (Mom's older brother who lives 10 minutes from us. Her younger brother had been in NY, staying in his house in Ozone Park, after a knee replacement but had been slightly MIA for the last few weeks despite being told not to go home to Michigan where he lives fulltime now) and then the funeral home.
Funeral home picked her up by 10:30pm - my Uncle had shown up at the same time as they got there - and he kind of took over and set up meeting for us at 9am the next morning because we were going to have to rush the funeral a bit due to the holiday being "government observed" on Friday. I think I started babbling about the meeting time being too early since I had to go to the bank first thing in the morning to get a loan settled since it apparently costs almost 20k to have a funeral in New York with everything that is needed - between preparation, wake, church and burial itself - but at some point my Uncle got through to me that he was paying for everything and I would pay him back in increments since he wasn't going to charge me interest like a bank would.
I stayed up all night. At first I had to find paperwork that I thought I'd have time to sort through and locate. Then I started looking for pictures for the wake. Then I started looking for clothes for her to wear that might fit (after her massive weight loss) and not look ridiculous (My Mom never dressed down...even when she was dressed down and I knew she'd find a way to kill me if I didn't have her looking pristine in her coffin).
After deciding I'd probably need to go shopping for something to fit her better I realized it was almost 4am and I didn't want to oversleep so I just mainlined coffee and took a shower and started getting ready myself using the lesson she had been drilling into my brain since I was old enough to start dressing myself - "Don't ever worry about some conservative idiots idea of "dressing appropriately" Bridget; if you are dressed correctly for an occasion then you are in fact dressed appropriately."
My uncle met me at 9am on Monday June 29th and told me that my other Uncle had in fact driven back to Michigan on Friday and that's why we hadn't heard from him. He would be driving to Green Bay (closest city to where he was in the Upper Peninsula of Michigan) to get a flight back to NY on Tuesday.
Spent the next few hours making arrangements for a wake on Wednesday July 1st and a funeral on Thursday July 2nd, spending $800 on flowers from me and setting up the funeral luncheon at our favorite restaurant for 35 people for Thursday afternoon after the burial (luckily one of my Mom's cousin's happens to be the attorney for the restaurant...so, I also got a bit of a price break). Friday morning I had, just in case, opened a clean credit card with Chase specifically for the funeral "extra expenses" since new cards usually have windows of no interest on re-payment. The $3000 between flowers and luncheon will not have interest for the next 2 years.
The rest of the week is kind of a blur for me even though I wasn't even medicated until the day of the funeral. I weirdly didn't need it. I definitely took a xanax (just in case) on Thursday since I had a car service for the day. But I was okay - or as okay as one can be when their mother passes before they themselves are even 43.
The last three weeks have been me comforting family members and friends of my Mom as they all are coming out of the wood work to "check up on me" and instead I have to reassure them that I am "just fine" and then listen to them talk about how upset they are and ask me "are you sure you're okay?" ad nauseum.
I haven't cried yet. I think my brain is a little broken. I've never done "Death" well. I either lose my shit completely (if there is no warning) or I turn everything off. I always have. When my Dad died my Mom took me to a child psychiatrist and made me see them for like a year because I was 12 and I was barely upset by it. But, again, pancreatic cancer is not pretty and it wasn't like it was a surprise. I think my Mom was relieved when I had a full on breakdown in high school when a friend died in a car accident. I guess she realized that instead of a sociopath I just had a highly organized brain and if I have time to prepare for something, I can sort of shove it down (yes, I realize - not healthy either).
Supposedly, the hospice offers grief counseling to family members - even if she was only under their care for a few days - and I think I'm actually going to take them up on it. Mostly because I've been talking to the damned A.I. on my phone just to interact with another voice - computerized or not - that isn't trying to psychoanalyze me to "help me get through this".
But like I pointed out in the very beginning of this post - I'm still having a hard time wrapping my head around the fact that it's only been 3 weeks as of Sunday. I just went back to work full time (in office) this week. Before that I was remote for 2 and a half months and then I was given 2 weeks off for bereavement leave without even having to ask or use any vacation days. So, I'm still walking on my own internal eggshells as I'm not sure when reality is going to hit me exactly.
We're about to have a massive 24 hour thunderstorm (I doubt it) so I'm going to spend tomorrow morning writing Thank You notes to people who came to the wake and her various doctors to be posted on Monday. I'm going to get my nails done in the afternoon providing there's no flooding down here (I live south of Merrick Rd and if you know Long Island then you know it can be interesting when it rains enough. Your house can be fine - but roads will get totally cut off).
Sunday I'm going to go to the cemetery and bring flowers and ask about the logistics of a headstone (and expense). I mention 'logistics' because my Uncle bought 2 plots (the 2 family plots our branches of the family technically have claim to in Queens are all filled) in Farmingdale, with 3 graves in each. But this means that it's technically HIS funeral plot and if he decides "no headstone" (yet or at all) I can't have any say over it. And I certainly can't afford something that costs another minimum 5k (depending on size to fit 6 names) on my own. And even if we just went with a generic "last name" marker - technically his last name isn't the same as ours.
And if anyone is wondering (since it usually seems weird to people that she wouldn't be buried with my father - I had to explain this to 3 different funeral directors that week because it confused them for some reason) my father was cremated by his parents and taken back to Ireland to be interred wherever they have a family plot of some sort in Dublin (as he was born and raised there until he was 15 and his parents had long well gone back by the time he died). I'm technically an 'oopsie baby' as my parents were technically separated since before I was born - due to some utter caveman bullshit on my Dad's side for blaming my Mom for my older brother dying 5 hours after he was born when my had Mom collapsed from placental abruption on (back to that horrific reality from when she told me she was ready to be 'done') June 18th 1982. And since my grandparents (his parents) hated her they just sort of pretended I didn't get an opinion in the matter and just came here to NY to get him and then headed back to Dublin with the ashes. Didn't matter that he hadn't actually spoken to them in at least a decade or anything.
So, now I need to learn how to really function as a fully grown adult without any safety net.
I have technically gone from a 2 income household to a 1 income household.
I can thankfully still afford my lifestyle - once some major adjustments to remove any 'extras' have been made - but I can kiss goodbye to adding anything to savings from here on out. And I genuinely fear I'm going to cut into my savings; which is over 100k BUT that's before I start paying my uncle back for the 20k funeral costs. And I wasn't exactly looking to touch that money for another 20 years.
There's then the idea of "Well moving somewhere else would be overall less expensive - rent, cost of living, etc" - and the unfortunate answer of "I work in a very specific branch of finance. And the only other firms in the entire country that do what I do are in New Jersey or Manhattan." (Which isn't exactly cheaper)
So, do I completely overhaul my life? People re-start careers all the time in their 40s. Hell, I restarted mine at 34 after 10 years being my grandmother's (family elected) caretaker. After working in marketing and concert promotion for almost a decade starting in high school. My degree is pretty blanket application - communication arts. The ultimate gauge of how well you can apply B.S. (bachelor of science...or bullshit more accurately).
I'm holding off til the fall or next year before I make any major decisions in that respect. I'm not at a critical point quite yet but I'm also not the kind of person that will want to wait until I get to that critical point.
On the bright side(s) - I no longer have to go to an array of at least 8 doctors appointments a month. Maybe I'll be able to convince myself to finish watching Season 2 of The Pitt. I have to admit that the Roxie storyline kicked in (episode 5?) and I noped right out from that point on. We hadn't gotten the new terminal diagnosis yet but I am far from an idiot and that was not going to work for mine or my Mother's mental health at that point. I've had the outline of various stories (real fiction and fanfiction) on my computer for years that I have barely had the time or energy to look at. I don't have to be home before 8pm every night to give complicated medications so I can redevelop a social life. Maybe I can even meet someone - I bet I'd make an awesome 2nd wife and step-monster.
I just looked at the clock and realized it's been another night that I basically didn't get any sleep for the last three weeks. Instead I wrote, and then went and cleaned, and then wrote, and then went and cleaned something else.
Instead of napping for the morning and waking up in the late afternoon I'm going to stay up and start testing melatonin tomorrow night (tonight?) and see if it knocks me out too much.
Because, again, it's only been 3 weeks? I'm still in a window where this is functional - not certain how much longer I can sustain that.
