Dear Diary: I’m not dead yet

Reverse chronology entries — newest first

October 24, 2014 Thursday

Oak Park, Illinois

The Apartment

Sorry, I intended to update daily, but that hasn't worked out. I'm not dead yet. I am settling in at home in Oak Park over a long week. It’s been a huge adjustment and I’ve had a lot of help. Hospice sent me home by ambulance and Corrine’s sisters Cate and Chris were waiting having set up the hospital bed and supporting equipment. I've had a crew of friends come by to offer me solace and support and encouragement. My bed is in the living room and can be turned to face the windows so that I can face the Chicago skyline or my guests or another way that faces the television. 

The Hospice folks provided a Hoyer Deluxe Electric Patient Lift and high back wheelchair and all the pads and gloves and other paraphernalia, plus various drugs and other medical supplies.  Today, Corrine transferred me into the wheelchair so that we could bring in a hair stylist to cut my hair. A Certified Nursing Assistant comes in twice a week for a sponge bath and bedclothes change and linen change. A Registered Nurse comes in once a week as well to monitor my medications and discuss any changes with the doctor. I still feel like I'm being underdosed with the Dilaudid (opioid prescribed mainly for end-stage cancer patients) and keep asking for more. There are also a couple other pain meds that help out -- a Fentanyl transdermal patch, Tylenol, Dexamethasone (a steroid six times more potent than prednisone), Lyrica (an anticonvulsant and nerve pain medication), Baclofen (a muscle relaxant to help with spasms), and Ativan (for anxiety).

Nights are the hardest. Because I was discharged with Metastatic Spinal Chord Compression at T5 between my shoulder blades, I am paralyzed from the chest down and largely bed-ridden. There's a great deal of pain, particularly at night. But ok, there are plenty who live for years and years and years with back pain and incontinence. If my level of palliative performance stayed like this (PPS = 50%), I could see going on for years and years like this. But my medical team seems to suggest (they are quite evasive) that I'm down to weeks. I don't mean to be blunt, and who really knows, but that seems to be what they suggest when they lower their voices. One RN whispered to me not to worry, that she'd be back in a week, and that the CNA would come a couple times a week, and then that they'd be back more frequently with more of them as the disease progressed over the coming weeks and my bones continue to fracture and I grow weaker. 

Through the night, I feel like the end is near, that this is not sustainable. But then the sun rises and the meds kick in and on days like today, I feel like I could go on and on like this, propping up each morning, interacting as able, having a nice meal or watching a movie and then getting ready for bed again. 

October 18, 2024 Friday

Chicago, Illinois

Northwestern Hospital

Discharge planned for this afternoon. The apartment is generally set up with hospice supplies. Good meeting with the pain management team for the pump. Increasing dosage by 5x of dilaudid. Waiting to see the effect by noon. Feeling ok, but high pain level during the night. 

October 17, 2024 Thursday

Chicago, Illinois

Northwestern Hospital

Dear Diary?

That sounds stupid. But less so than Stardate 2014. I’ll figure it out.

I’m starting to sink in to the daily realization of this new existence getting last bits of advice from hospital staff and paraplegic strategies and hospice equipment in place at the apartment before being discharged to home hospice. Disrupted discs at T5 likely causing permanent paralysis from waist/chest down.  

Corrine is still without her phone for the next day or two when the new one comes. See below for updates from the past week and communication trees and AirBnB info.

I keep accidentally over-writing these entries. Please bear with me I will get it figured out. Probably Will be discharged tomorrow morning.

All OK.

October 16, 2024 Wednesday

Dear Diary:

My spine at chest level is cracked. There is a crack, there is a crack in everything. That's where the light gets in.

Cornelia and Corrine are taking shifts at Northwestern Hospital to stabilize me in a large, quiet room meant for childbirth. It's very calming and the aides are attentive. They will see me through discharge tomorrow, after a party tonight with Portillo's beef and sausage combos and a vegetarian hot dog. We've been here since Sunday. Hopefully, I'll be back in home hospice tomorrow or the next day. Corrine's sister Chris is coming in tonight to help out. Unfortunately, Corrine left her phone in a Lyft last night so is incommunicado for a while. It's probably for the best since that kind of communication is so emotionally and physically draining. Greg Granger (and Pamela) are coming from Louisiana on Saturday the 19th, while John Freeman and Christina Hall are driving in from the Detroit area on Monday. Cousin Tira Kitchens Rogers will drive up midweek next week, and brother Byron at the end of next week and next weekend. If you're looking for information or a status report, one of those might be good to get in touch with next week. They are pretty easy to find on FaceBook. Family contacts might reach out to Dad or Byron. We just needed a bit of a break from writing and talking.

We've rented a very nice 3 bedroom AirBnB a block away from the apartment for anyone who wants to come up over the next few weeks and our friend and colleague Karen Brehmer has created a sign-up document on Google Sheets. Anyone is welcome; just get in touch with one of our points of contact or with us if you have questions or want to make sure a room is open. Or you're welcome to pop in on a day trip or find another BnB nearby. Many are pet friendly. Please don't feel obligated to come, though. I'm very grateful for the all the good will sent my way, by near or by far. I'll try to post at least a short diary each day to update folks on the progress.

===============================

October 14, 2024

The New New (Erstwhile last weeks)  

Dear Diary:

I had a whirlwind week of home hospice with its ups and downs over the past week or two, officially signing up with the Chaplain once I spoke to her on October 9th. Of the 4 different agents who came out, she was the best at explaining the service in a calm, organized fashion. She is Finnish, raised Catholic, and converted to Lutherism later in life. Now that she's doing Chaplain work for a hospice service, she says that she's more of generalist. I told her that if she keeps going, she'll be a Unitarian before she knows it, planning coffee Klatches and trying to lock people out who show up late for service. 

I was generally up and about and in good spirits, before I started hospice, we were told by my hospice doc that things would move fast once I started to decompensate. On saturday evening, I went from mostly functional, ranking pretty high on the palliative scale and getting around on a cane, to being unable to sit up-right, much less hold myself off the floor. I couldn't hold myself upright enough to pee. It was miserable. I had a terrible pain in my sternum, right in the middle of my chest, like someone had punched me as hard as they could. And i dragged my feet limply behind me. 

I handed over communication to Corrine after losing all function from my waist down on the morning of October 13th. We were taken by ambulance first to the hospice inpatient unit a couple miles away, and the staff there sent us on to the oncology unit at Northwestern. 

After 30 hours or so in an ER bay at Northwestern (somewhat similar to Dante's roller-coaster layers of Hell & Paradise), We realized that time was drawing tight, but had also been on a yoyo of hope and resignation and had possibly reduced my timeline from months to days rather than weeks.We were working with three different siloed teams at NW to try to figure out next steps: do nothing but pain relief (hospice); try a hail Mary pass with surgery to relieve pressure on my spine (thoracic neuro-surgery); or try a brief round of minimally invasive radiation to try to bring some function back to my legs and get me back home for hospice at home for a few more weeks where I can meet with friends for a final goodbye. We went with radiation.

I'm in pretty good spirits for someone who is paralyzed. While I may not be quite "walkie talkie" at the moment" I'm pink and coherent for much of the day, so not necessarily walkie but definitely talkie. I could be this way for weeks, maybe more than a month. Or for less time. With hospice and Stage IV cancer, what will kill me is further breakage that affects breathing and heart rate and wasting away

I had one bout of sadness and angst when the full measure of my predicament hit me during that first night, maybe 2am in the dark, when Corrine had settled into a fitful sleep in a straightback bedside chair in the ER, her head resting against the edge of the bed and crying softly. But then I  settled into a sense of peace and acceptance within a few moments, thinking of my mother and the knowledge that she didn't have to suffer through witnessing this passing. I can't control any of it; I can only let go and trust that everyone will be ok. My friends and relatives are all tough birds. When I woke up the next morning, that sense of peace stayed with me and continues still. I trust everyone will be ok. 

==================================

October 12, 2024

Contact Methods

Telephone is probably the least reliable method of contact, but if you leave a message, I appreciate it. For now, I’m a bit too short of breath (SOB) to respond as I’d like. I do occasionally/often respond, though, even if by text.

FaceBook Postings are set to global audience, so you might just lurk along with that one to keep up (or not), or like/care/laugh/anger emoji in support or post comments, memories, or messages of support. I even like shared dream memories. Lucid dreaming recounting are fun, and I promise not to ridicule you in front of others. For all messages, I may respond right away or a few days later or it may slip through the cracks. Please forgive. By the way, I’m still pretty much doing fine with disease progression, just can’t move around much because of the rib/back/neurological pain for now. Hope to be feeling better soon with all that. Messages, visits, and help are always appreciated. The rooftop is lovely.

For nice interactive connections, DM me here for a phone text message number for casual greetings and callouts. Often text messaging works better for that. Or swap numbers with another friend. No need to ask for permission to share.

For making plans,  try those points of contact first, or just DM @ Corrine Calice by phone to see how things are going (or Corrine.Calice@gmail.com) and to try to schedule a meet up. Or you can DM me on FB and I'll cross reference with Corrine to make sure that dates are good in the calendar. My calendar, apparently, has turned into a sentient being, though she’s still fairly docile.  

The timing is the trickiest — planning too far ahead might get lost in the shuffle; planning too close ahead might result in unavailable slots. I’ll be in ChicagoOakPark. if there comes a time when we're able to get back to Michigan, we'll let people know.

Message me for random questions. Or Corrine, Karen, Tina, Cornelia. Or anyone else in my circle. 

I'll keep updating these postings as much as I can -- starting now so that Corrine isn't carrying so much of the burden of communicating with everyone, but I'll set it up in a slightly different, abbreviated format. I'll add clinical notes to this page in diary format with newest information at the top.

Trust that it's all going as it should. This journey over the last few weeks has been quite peaceful. And none of us know how much time we have. You might just say a prayer in your own way and let go.