Speaking just to one inquiry: where can we donate? It’s not our intention, truly, to ask for donations, but we want to honor the people who ask us. Here are four organizations that Stephen was close to:
I went over about 3 after the chaplain said “it’s now.” It’s meaning the world to me that I got to be there.
He was breathing when I went in, I called my parents to say I was there, I read him something my father had written him, then something from my cousin, and played him a message someone had recorded for him today, and then when I was returning the chaplain’s call we talked about how you could tell, and I said, well, it looks like his chest isn’t moving. So somewhere in there he stopped breathing, and I couldn’t say when. But there was no sigh, no gasp, no struggle — I can’t imagine a more peaceful way to leave.
This won't be the last post here, but it’s the last post from a day when Stephen was with us. Entering a new reality (all of us).
To Stephen’s loved ones: news about Stephen has fallen behind for the wider circle, and for that I apologize. It’s been an intense three days since Tuesday and I have been looking for the time to catch you up. I have just left to visit Stephen, so this message comes from both me and my wife, Carol Snow, so there'll be some "I"s and some "David's." First things first: Stephen has moved from the hospital where no one could visit to a warmly praised hospice called CPMC Coming Home at 115 Diamond Street in San Francisco, where he can have visitors one at a time between 9 AM and 9 PM. No appointment is necessary but the traffic issue is real. If you would like to visit, please get in touch with Carol Cruickshank from Friends Meeting who is very generously coordinating. Her email is email@example.com and her phone number is 415-846-4083. After his acute setback on Monday (pulmonary embolisms, attendant breathing crisis and heart arrhythmia), Stephen's condition was successfully stabilized in the transitional ICU. But the new CT scan also showed the brain tumor hadn’t been halted. Slowed perhaps, or perhaps not. Radiation treatment was suspended for a couple of days for Stephen to regroup, with the idea that perhaps it would resume if only for Thursday and Friday since it might help Stephen psychologically to take his ride across town and back. But on Thursday the doctor, care team and Stephen together decided not to continue the treatment, and many many phone calls later all agreed that hospice was the right course. Thursday afternoon Stephen moved from Davies to CPMC Coming Home Hospice and yesterday had his first visitors in many weeks.
From Carol: Everyone, including Stephen, is surprised and dismayed that the tumor is more aggressive than expected. Already Stephen was unable to make progress and then even to carry on with the PT that followed his biopsy bleeding. Though his immediate situation stabilized with medication, all has been a blow to his system and he continued to lose ground functionally. The medical and care teams think the treatments do not offer meaningful promise and Stephen realizes he will not recover enough to return home. The tumor means that Stephen is in different states of presence at different times, sometimes lucid sometimes not, sometimes irritable sometimes not, often sleeping. When David arrived yesterday, Stephen was extremely frustrated "just lying here." David started to facilitate phone calls and FaceTimes and Stephen got distraction and pleasure from that. It was lovely for me to see his face! From David: I know Stephen would like to call or use FaceTime with more of you. He doesn't have his phone and someone has to make the call for him on their phone. If you give Carol Cruickshank your phone number, as circumstances permit another visitor might be able to help him call you. I hope you understand that there will be some calls not made and some who don’t hear back, I wish it weren't so.
No one can say just how long Stephen has. I was surprised to find his physical body to be chugging along, without much in the way of tubes and drips, and yesterday afternoon and evening he was very present until he ran out of energy and then faded into sleep. I don’t know how long these cycles are. But he may not be eating and has expressed his readiness to go. If he could pull his own plug he would do so, but he’s also sweet with visitors and callers and sees them as the next best thing while still here.
Keeping this blog post and reading all your messages and wishes have been immeasurably important to Stephen during this time, thanks to all! He's no longer able to access it on his own, but of course the family and everyone who visits can see anything added.
Good morning (Tuesday), this is David, Stephen’s brother, posting because Stephen hasn’t been able to in a while and I know people are wondering what that means.
First, Stephen’s birthday party took place as arranged on both Saturday and Sunday, with good attendance and good sharing and meeting-each-other, except that Stephen couldn’t join because he was too tired. As Marion Steeg said, (a thousand heartfelt thanks to Marion who organized the party from the beginning!) it sank in finally what Stephen wanted, which was for his friends and family all to meet each other, and for him to be the connector, which he surely was. Lots of people who had heard about each other got to put faces to names and hear about other sides of Stephen’s life, and Marion had us go ‘round and record greetings and personal messages. We sang Happy Birthday a couple of times, once with a common starting note! Another wonderful aspect for me was the warmth I felt seeing friends of Stephen’s I haven’t seen in a long time. Justin Lin was the Zoom-master who made things possible technically, and he has recordings to share. He appeared as a birthday cake, though towards the end we got to see the person behind the frosting. When I get an edited version (no promises yet) I’ll put a link here. At the very least it’s nice to think that Stephen will be able to see the whole event later (8 hours start to finish) and enjoy people’s interactions and messages over the coming days.
So, for why Stephen didn’t show up. Last week was his second week of radiation and chemo, and even on Friday before the party he sounded wiped out and even said some things that were a bit confused. I skipped over Saturday but called him at 7 PM on Sunday when he didn’t show up. He had to be woken up and soon after we spoke he texted “Sorry, I can’t talk right now.”
Then the medical: yesterday afternoon we got a call from Stephen’s doctor at Davies Medical Center, to give an update. He reported that Stephen was having rapid breathing and irregular heartbeat, and that in order to help determine the cause they were going to take him for a CT scan. They hoped to be able to tell if it was tumor-related or blood-clot related. It proved to be the latter, and he called a second time to say Stephen had had a pulmonary embolism, meaning in his case blood clots in both lungs, the good news being that “he dodged a bullet” since depending on which side of the heart is involved blood clots can go either to the lungs or the brain. And with blood thinners and other medications his rapid breathing and heart rhythm are somewhat stabilized. They’re going to suspend the cancer treatment for a day or two to monitor his progress though they can return to that if things go well. It was Carol and my first time talking to the doctor, so I’m glad to have made that connection: he was very caring and articulate. We also got to meet by phone Stephen’s special friend there, Linda the palliative care nurse, whom he wrote about earlier because she had attended George School where our mother had gone, and who knew some people in common with Stephen in the Quaker world.
All in all a very mixed report: I’m sorry not to have had anything to post earlier, but glad to be able to catch people up. Thanks to everyone who made it to the birthday party, (with apologies for any and all technical glitches), or were there in spirit.
to find a general timeslot or just click onto the zoom meeting!:
Part 1: Sat & Sunday, May 9th-10 from 5-7 PM PDT, both days, come online and get to know a friend of a friend for 5-10 minutes. Tell stories, ask each other questions, and engage. There may be a waiting room in case it gets too busy, but please stay there and you will be let in!
Part 2: Sat & Sunday, May 9th-10th from 7-9 PM PDT, both days, come online for small group personal greetings to catch up, tell me about who you met, and say hi.
If you would like to know how my treatment is going or how I’m feeling you can read up on www.caringbridge.org/visit/smatchett/journal, this way you’ll know exactly what’s going on and I can reduce the re-explaining.
Well just a little update of the physical type. I am now officially doing chemo in addition to radiation. That means each morning (starting today) I do a little anti-nauseous drug then the chemical, before I leave for the radiation treatment. So far so good, in that it hasn’t increased bad effects, though of course it’s only one day! Will see! The chemical has a passable record of complementary live. We’ll see over this next couple of weeks if that’s true in my case. Apparently they’re doing more testing still about my tumor and we’re trying things out. The adventure continues!
Wow I finally kind of caught up on the stupid stuff. I’ve been wanting to write a POSITIVE description of my high point of the day each day, which is my daily trip Monday through Friday to the radiation therapy every day. At Buchanan Hospital, which is my old hospital, where the cancer treatment takes place. That is, I get an outdoor trip every day (except weekends) through my old neighborhood to my old hospital which is where the cancer treatment takes place every day. Generally the treatments are at 11:15 so I am scheduled about 10:15 to be picked up. I get four visits in the outside air, i.e., I am picked up at Davies where I live, by a team of two always charming drivers, well one driver and one person who rides with me inside, we have a delightful talk, sometimes I’ve had them before but usually it’s a new person, and everybody to a person loves this job! Usually they’ve just started out, it’s a year or two. Sometimes you get a little more experienced person, five or even six years, but generally it seems like a starting out thing.
We have a drive through my neighborhood, different streets and routes depending on who’s driving, so I get to see different parts of it. Sometimes, especially at the beginning, I got to even go by requested routes (lots of drivers like to be given suggestions) and see specific parts of my neighborhood! We even went by my house a couple of times so I could check on is still standing!
Anyway, we eventually get to Buchanan campus, where I get outside visit number two, as we disembark to enter the cancer treatment center they still operating there, despite the rest of the hospital at that location closed! I also make a point of thanking and acknowledging the driver portion of our team for getting us there safely, because they need to know that you’re appreciated.
I then get to say hi to my old hospital and ride downstairs to level B. The elevator is just short enough that they have to get me in sort of diagonally for my feet! Downstairs on the cancer floor they sign me in and we sit there in the hall till ready. I’ve got my phone so I’m usually checking my messages. Then we go into the treatment room, switch onto the gurney from the one I’m on (through sort of an aerial switcheroo). Which is when the best part of my day arrives then for me, which is taking off my glasses and, wait for it, haha, my breathing mask! Because I’ve been wearing a mask and taking it off I get to breeze actual air! Then they put on the mask that keeps your face still, and start in on the required radiation, which lasts about 15 minutes or so, in funny different positions and passes over and beside your face. Then we unscrew the mask again and the process is repeated, back on the hospital gurney, your stuff back on (unfortunately including your chicangos mask!) and do it all over again the next day, or if it’s Friday, then Monday. Then comes fresher visit number three, as you go out of Buchanan, and back into your truck return to Davies! Thank the driver again and pack in for the return ride.
Another ride through the streets, and back to Davies, where you get fresh air #4! And it’s home again jiggety jig, a switcheroo to my waiting godsend gurney and into bed, because that’s all I’m ready for at that point!
Oh I didn’t say, a skilled nursing facility doesn’t have its own laundry, because I just want to keep you in the nurses gowns all the time. However what I am doing is getting dressed every day now, and it feels more human. What it means is that I have to collect up some laundry every couple of days and wash them and bring them back so I still have things to wear. Another job that wonderful Damon is willfully doing because it’s so help to my mood!
Anyway I think with a sense of some structuring of my day, that is, this kind of ridiculous commitment that they make to travel I have to say is a godsend! It gives me something to look forward to!
Then the rest of the day I’ve got the chance to take care of tasks, like banking and that kind of stuff, and even be animated to a participatory, conspicuatory or speech session if there should happen to be one on offer!
And of course reading all my wonderful posts and emails!! I’m a happy camper! 😃
Still a lot to say and no time right now, so this will be short again! Yesterday was another blur. I met with all three of my new physical, occupational and speech therapists with are each anxious to make a plan with me, plus, I finally have an appointment to work on the end-of-life plan with my palliative care nurse (who is also my secret food supplier!). Plus the the kicker, finally an appointment tomorrow or Friday with my actual therapist that is colonoscopist, who’s supposed to be overseeing my whole plan and that I haven’t even met with, because she can only meet up by telephone and a connection through the cyber technology which as I have told them several times is very unfriendly to a person with disabilities of any kind, go figure. So I have been literally hours on the phone getting this set up with multiple problems Sutter seems quite insensitive to being helpful to fixing, and I have finally taken to just send over and over again please assist me with a human. Please assist me with a human. Until I get a person whom I tell “You’re staying on till we get this fixed.” And I now have got an appointment at 7 o’clock tomorrow to finish take care of the setting up of the final details so that we can get a human connection to finally meet with my colonoscopy. I think technology has kind of taken a front seat here!
Well, the shoe finally dropped. I switched today to the skilled nursing facility, after one last report that they weren’t taking new residence (my heart sang for a moment) but it turns out they still are, in my second round of testing (the second COVID-19 test on me because they let the first one expire!), is proof enough that they were taking entrance, so I resigned to my fate.
Moving was easy or hard, depending how you looked at it. I got back from my midday cancer treatment so fittin to take a dive into sleep, which is all I’m good for. So I slept while somebody else perks up my stuff, as kind of a zombie. Later that evening, after more sleeping, I slowly went through all those bags and reconstructed my sleeping (and working/waking) area around me. A lot of work, but a one time thing.
On Sunday, March 15, 2020, 9:21:41 AM PDT, Stephen Matchett <firstname.lastname@example.org> wrote:
Dear Friends - Something I would have shared in joys and concerned today I’m sending out by email instead - about an unfolding health concern (non-Corona virus related) I’m having: please keep me in your prayers tomorrow when I’m at the ophthalmologist’s, who will be ordering further testing to determine the cause of a problem I’ve been having with my vision for the last week or so. It’s a shimmery blind spot on the right side of my field of vision in both eyes, indicating something going on on the left side of my brain that could be the result of an infection, a small stroke, or a tumor, among the delightful possibilities I’ve had all weekend to speculate about with no knowledge.... I’ll of course follow up with whatever we find out, and in the mean time appreciate your fellowship and solidarity! Peace and good health to all - Stephen
On Monday, March 16, 2020, 4:10:10 PM PDT, Stephen Matchett <email@example.com> wrote:
Thank you for the outpouring of supportive messages, I am truly buoyed up! Just to update everyone, the ophthalmologist today ordered an MRI for tomorrow and then I have an appointment with a neurologist on Thursday to go over the results. I won’t send out another message till after that. Please keep me, and all the professionals involved, in your prayers. Thanks again, and Peace - Stephen
On Tuesday, March 17, 2020, 11:01:25 PM PDT, Stephen Matchett <firstname.lastname@example.org> wrote:
Got word faster than expected, MRI reveals a small mass interfering with my optic nerve on the left side of my brain, no surprise there. The doctors tell me it's probably benign, though more inspection needed. Next stop is the neurosurgeon, hopefully seeing one tomorrow, though everything's always at risk of grinding to a halt given the crazy Corona virus situation. Fingers crossed (that's a prayer position no?) Peace - Stephen
On Wednesday, March 18, 2020, 8:28:38 PM PDT, Stephen Matchett <email@example.com> wrote:
Today’s installment: Saw surgeon Matthew MacDougall this morning. He needs a better look, and has ordered a second fancier MRI for that purpose. Hopefully I can get that Friday if not sooner (I’ll spare you the insurance wrangling this has occasioned), and see him again next week, probably Wednesday (he only sees patients Tuesdays and Wednesdays, and Tuesday he’s booked.) Mmo and/or radiation more likely. Reason a glioma can’t be removed is that instead of being like a discreet meatball it’s more like a spray of cells throughout the affected area. (So much for “probably benign.”) The “low grade” description, if true, would mean it’s the least aggressive kind, with a good prognosis. Enough speculation though, absent more information! One step at a time. Thanks for your support! Peace - Stephen
On Wednesday, March 25, 2020, 7:02:54 PM PDT, Stephen Matchett <firstname.lastname@example.org> wrote:
Dear Friends all - For those who are following this - Thanks for your prayers and other expressions of support and solidarity! Had the second MRI Monday and saw the neurosurgeon again today. Summary is the mass needs to be biopsied in order for Dr. MacDougall to determine appropriate treatment. The MRI showed more detail only not enough, so as early as next week I’ll be getting a small hole drilled in my skull and a precision needle inserted to take a few cells from the tumor for testing. This’ll call for an overnight in intensive care at the spanking new Sutter hospital here in SF, with luck before it’s overrun with coronavirus sufferers. (Only reason for intensive care being unlikely (1%) possibility of complications in what the doctor otherwise calls “kindergarten brain surgery.” Parkinson’s patients even do it electively to cure little tremors.)
Diagnosis still uncertain pending that procedure. Ironically, please all pray I’ve got a lymphoma, that being the best possible scenario - white blood-cell tumors (which is what lymphoma is) being completely treatable, and something I’m joyfully at enhanced risk for with my HIV. (Never thought I’d hear myself say that! Always knew it would come in handy one day.)
If it’s a glioma,* which is the likely alternative, then the prognosis depends on whether it’s high or low grade, which again only the biopsy can determine. Unfortunately the MRI did not rule out, as hoped, high grade activity. (*A glioma just means a tumor of the glial cells, which are any brain cells that aren’t neurons. The most common type of brain tumor.)
In the meantime, I started on a steroid today that could bring down the internal swelling and ameliorate hopefully somewhat at least the pesky symptoms affecting my eyesight in the short term. Time will tell.
Spirits good on this mysterious adventure. Love and prayers continue to be felt and appreciated! And to any of you in your own health challenges - I don’t pretend to hold a monopoly! We all require and deserve care.
Love, Peace and continued sustenance of all from Godde in this perilous, interesting time - Stephen
On Thursday, March 26, 2020, 7:05:08 PM PDT, Stephen Matchett <email@example.com> wrote:
Dear Friends - Thanks for continued out pouring. You’re making me spoiled!
In the ever evolving landscape, the biopsy is now scheduled for crack of dawn this coming Monday 3/30! 7:30 to be precise (I have to get there at 6). All pre registered and preop visited w my primary doc and EKG’d and blood drawn today w even a business day to spare. Apparently this is actually a perfect time for fitting in an emergency surgery, if you've got any in mind... A lot of elective and non urgent patients are canceling or getting canceled, and the covid wave hasn't hit yet here knock on wood. That's how they got me in so quick.
I’m due to stay overnight as explained earlier, so should be returning home Tuesday. Damon’s planning to pick me up. In a car, aargh. You can bet I plan to get myself there on Monday though, since no one can go in with me anyway under this temporary regime.
Love - Stephen
On Monday, March 30, 2020, 3:21:21 PM PDT, Stephen Matchett <firstname.lastname@example.org> wrote:
Well disappointment on recovery: successful biopsy only I had a small bleed or stroke during the procedure so I've got temporary (hopefully!) impairment on my right side, and will have to stay here longer... Well cared for here in ICU on the bright side, and I have a view of city hall 😬. Takes a while to type, only thank godde for this phone! Talking's a bit slurred right now so I prefer email, and might not answer but do appreciate. The adventure continues. 💕💕💕 Stephen
(Today:) Some improvement slow but sure. Still waiting to eat, since they were worried about my swallowing, only seems ok now. Very well taken care of still in ICU and good nurses etc. Speech getting better. Not clear when go home, could still be some days, so it's an adjustment. And no visitors unfortunately (or fortunately! Total privacy!) Much love & many hugs and gratitude to all ❤️❤️💕🙏
More later. Want to get something out at least...
(Next:) Waiting on the nutritionist and the kitchen. They gave me peanut butter, graham crackers and applesauce from on floor supplies though. Two out of three w added sugar great Americans food system insures continued hospitalizations... Only the applesauce any good though I ate the others out of need. (Not that I'm sugar free in life. I just like to make the point!) (& kvetch)
(Next:) Sitting in chair and exercising. Progress! They don't mess around. 👋🏽💜
(Next:) Saw surgeon. Getting better idea of expected course: out of ICU today into general populations a couple of days, then possibly acute rehab for a couple of days to a week (hopefully at Davies near home) and then home. Hoping for near total recovery from symptoms consequent to the biopsy. Then of course there's the biopsy result itself, which we may even have this week thanks to covid again! Wait and see tho.