Journal

Journal entry by Stephen Matchett

Not a lot to write about, in one sense. I’m sort of falling into a routine, which is good. And I’m reaching out a little more, like attending our midweek worship tonight, a twelve step recovery group I go to on Tuesdays (in this building in fact, though of course it’s not meeting here, having converted like everything else in an online  format, so interestingly I am the only person in the original plan.

The ironic thing, again, is that without the pandemic none of these meetings would be online, and if you were in the hospital, or homebound, or just not anxious to get in the car or whatever, you wouldn’t have a way to attend. While now, you can, and people do. So I’m definitely seeing that things have changed, and that when this is over, or however it is characterized and things are “back to normal“ I predict there’s going to be a permanent change in some of these ways of getting together. I think there will be a permanent Zoom or other online component to many gatherings, such that a number of you can attend in person or by phone or computer and really maximize participation. It’s been possible in some places but that might become more of a standard. Very interesting to think about. 

For therapy I continue to go out for four or five sessions daily, down to an activity room on this floor, or even one a couple of floors below, that has extensive machinery of different kinds that I use for one or another kind of exercise. We do a lot of stair climbing though, that being a principal activity of crucial importance for me! That and just walking. Because I really have to learn again from scratch. Pretty humbling that. It’s plenty awkward. The good thing though is that I do seem to be improving daily, so that is encouraging. 

Having the staples out and washed my hair a couple of times now, my appearance is actually getting somewhere back to passable, and I actually shared a Skype call with my friend Lary, letting him see me for the first time in a couple of weeks. That felt like a step too. I don’t exactly have my smile back, though the facial droop is also on the improvement. 

All right, here’s a picture one of the nurses took It’s on one of our evening walks (I have one assigned each night, to increase my time on my feet). Anyway Iuliano, that’s his name, from Brazil, with an Italian boyfriend (!), is one of the tallest guys on the unit, only of course way you shorter than me, so he had me do this picture holding my hand over his head to show how short he is.(If I can figure out how to put it in. Apparently not in this entry, maybe it has to go on the gallery.Well stay tuned.)

Journal entry by Stephen Matchett

Well Stanford is taking its sweet time, so still no test results there. In fact they just set away, today, for another set of images or something even higher contrast, and just told my neurologist. So he was actually in touch with me today to keep me updated (miracle of miracles). I’m actually at peace with this process, because the longer it takes, the longer I have to concentrate on my therapy, which is something of a necessity, regardless of what happens. It will sort of get off the rails when it comes to having to start considering chemo, radiation, and various treatment options. Or maybe I just feel the need to go slow.

Now did I say before, like I have told a couple of people, that it was almost worth having this brain mass (not quite worth it, I’m not totally flipped, just almost), to find out this amazing piece of information about the brain: I mean, we always knew that it is the left side of the brain that controls the right, and vice versa. Yet who knew that in each eyeball there’s a supply from each side of the brain, controlling a specific part of the field of vision, that is the left controls the right field of vision in each eye. If that’s not needlessly complex I don’t know what is. Yet, it’s how the experts (and even the amateurs) could tell that it was a problem on the brain, not in the eyes, so maybe it does have some functional reason. Just something to occupy your mind while you take off your makeup. 

Journal entry by Stephen Matchett

Busy day, couldn’t write until now. Mostly of my own construction, having to do with fitting a bunch of financial figuring around my non-letting up therapy. That’s because it’s crunch time with the mortgage and credit card payments due (that’s every month) and this month insurance and property tax, plus income tax to think about. So April is always kind of crazy, and with being in the hospital I sort of let things slide. I know that people are getting grace period & permissions etc. to be late, however with a refinance pending, something I started earlier, to do with the owner move-in evection I’m going to have to pay for down the line (tho everything‘s kind of up in the air with things the way they are right now, still I want to be able to do it when the time comes) things like mortgage, taxes, and insurance are exactly the things that could screw up my application, so I don’t want to be asking for time on those, and it’s down to the wire. I actually missed the deadline for property taxes but the state adjusted that deadline for everybody, so that one i feel OK about.

Anyway the thing is that one of my tenants has announced he can’t pay his rent this month, so not only have I had to scramble for the time, also for the money as well. Time to call on help, since on top of that I’m having problems accessing stuff on the computer I reluctantly had brought to me from home, due to a combo of password glitches and my vision (oh, the original presenting symptom). Luckily for me I have a great advocates on my brokerage account who is, I hope, working some magic over the next couple of days to get a few of my bills paid without wait times, etc., which should help me get back on track.

Also lucky for me I became a reluctant cell phone user earlier this season, kind of another fluke that fell into place right when needed, because without the cell phone I would just be up a creek. I thank my spiritual advisor (one of them), Elaine Emily of Strawberry Creek Meeting, for wittingly or unwittingly, who knows, getting me into the cell phone using generation last fall, when we thought I was going to be traveling in the ministry, including visits to meetings and taking part in hosted events, and she said “you can’t travel like that without a text capability” for contacting and being responsible to your hosts. Well, as it turns out, life’s takenq a whole different tangent, the trip gotten canceled in favor of the emerging family reconciliation and adoption process, taking Damon and his family into my household and the consequent developments in that whole area of my life, and now this! Who knew? Anyway, I’m never the easy adopter of the seemingly simple alternative, yet for better or for worse I seem to have become another worshiper of the shrine. Heck even my parents have a cell phone, and they’re in there 90s.

Yikes I didn’t mean this to be all about technology! I still want to say though that a really helpful person at my credit union also got me onto the app that allows me to deposit checks (well the one that I got) with a photograph online. That was another major frustration that wasn’t resolving with online magic, that a human person was able to walk me through. Let’s hear it for those human persons!   
 
The real news though (still no biopsy report) is that they snuck in today and took out the staples from my brain incision, so I could finally wash my hair!!

Sigh, life in its particulars keeps on keeping on... (you’re not required to read this you know!) Love you all, Stephen 

Journal entry by Stephen Matchett

Just to say, wishing a good Easter to all (to whom it has relevance!).  I continue to love all of you! 

Thanks to COVID-19, I’m getting seven days a week of therapy: we are actually short patiented, and there are any number of people trying to make up some shift work, so they just keep offering treatment  during what are supposed to be slow days. I had five again yesterday. Actually today is a little bit slower for the holiday I suspect. I’m actually going to cancel a physical therapy session that’s happening right when we have meeting for worship, Which with it all online, I can attend and hope to.

Yesterday’s visit with David and Carol was predictably sweet and fine. Another little time sitting out under the trees and just talking about this and that. Nice to have that connection. And Carol’s got a very fetching mask she got for her travels! All floral patterned. The things we appreciate these days!

Journal entry by Stephen Matchett

A little change: writing in the morning instead of last night. Actually I’d say I got into bed earlier, only it’s not true. I actually was up fiddling with my computer as I attempt to catch up on necessary business (i.e. finances for the month, which is already underway).  Life is still good, though. 

I just had a great conversation, with a nurse appropriately enough named Grace - which you can have with anybody anytime in this place. She shared with me about her background in the Philippines (she’s been here over 20 years), and I told her about my diagnosis, and my turning my life around with my family in the last couple of years, and what a miracle of healing that’s been. She was truly supportive, and also animated at my interest in her, and went on to pull out her cell phone and show me a raft of pictures of family back home that she’s helped incredibly over the years, with spiritual, material and practical assistance. Every single person has a story, and something to share. Sounds so trite to say, only it’s like it’s a truth we don’t act on often enough. Who has time to sleep? 

Along with some mail (and more cookies!), Damon & Lansley brought a Trader Joe’s unsweetened soy milk, the kind I get at home, and oh what a treat that is. I’ve been resistant to laying in basic food, because they’re supposed to be feeding me here (& for the most part do a pretty good job), yet this is a gift, and better yet, they can refrigerate it for me right here on the floor and I can get out at any time by a simple request. Now I’ve got David bringing in some brazil nuts from Rainbow (no refrigeration necessary!), and I think I’ll be feeling better yet, getting those back into my diet too.  Why, my life is nearly complete! 

Speaking of David and Carol, we’ve arranged for another of those semi-clandestine half-hour or so family visits  in the park, under the trees. I haven’t seen them either since two weeks ago, and it will be nice to catch up a little face to face.

Hope your Saturday goes well. I so truly appreciate every one of you so very much, and your numerous messages, even if I don’t respond to them individually! They are required reading, usually several times by the end, and such a joy. Even when you just show up on the list as having looked, without leaving words, that list is fun to look over. Also some of you seem to have even found your way into the well wishes and tributes category, for which I humbly thank you, because I think that means you gave some money, which CaringBridge can always use, as a strictly mission-driven charity. (Unsolicited plug.) Anyway, wherever you post I do eventually find it! You are the reason I remain so buoyed by this process. Thank you thank you thank you!!! 

Journal entry by Stephen Matchett

Judy and Bill actually knew about this one first, because I hadn’t written even a text about it and they called. Though it’s just about more waiting for the most part. So, Marion, my farmworker friend, I’m finally coming around to your more jaded view of brain surgeon bedside manner, after cutting mine a lot of slack! Let’s just say they’re not big on follow-up phone calls or hand-holding... it’s not what we pay them the big bucks for. My simple question I put to him twice and he never answered. However, self-help really works when you’re motivated, and I ended up today, at his own secretary’s seemingly strange suggestion, calling Stanford directly and through trial and error getting to the person at the lab of the many thousands or Godde knows how many, who could actually tell me, no it doesn’t require a complete reculture for the second opinion, so in that sense not an additional week. In fact the test may already be done, however it’s on some kind of clinical delay and not expected before tomorrow at the very earliest, and I’m reading it more like Monday. So that’s another weekend to cool our collective heels. Thanks doc, might’ve been nice to have an update! I feel ok with that result though because we’re pretty much on the confirmation track of a low-grade glioma. Also with a few more days to wait I can keep concentrating on my therapy before turning to think about treatment options and such like. One thing at a time, with time to think about one thing at a time, is always a good way to go.  

The really good news today was that Damon and Landsly and I got a visit! We met outside during one of my occupational therapy sessions, and the therapist walked me up the path and we sat for half an hour in a garden under some trees. Of course we couldn’t touch, we all had masks on, yet what a great time together and something we all needed, as we’ve been missing that connection, and just catching up on our lives. Happy birthday yesterday to Irie, the daughter/grandma, who just turned 27, and therefore also Helen, who shares the birthday (along with the Buddha) an exactly ten years, so Happy 37th Helen! Anyway, bravo for a little bending the rules! We’ll all get through this weird, unprecedented time.  Love to all! Stephen 

Journal entry by Stephen Matchett

Only partial but enough information to want to share while final results are still pending. 
 
OK, just had a conversation with the surgeon. The Stanford test is for a second opinion with more accurate testing, so we don't have full confirmation. However, the first result, which only came this morning also, does pretty much rule out a lymphoma, so that's a disappointment. I was packing all my years with HIV into the not unrealistic hope that I was a likely candidate for such a white blood cell tumor. Now we're seeking confirmation of the apparent low grade nature of the glioma, with better, more accurate test only available down there. So it's like (so far as it's not definite yet), the middle of the three courses: not the best, which would've been pretty treatable and even curable, or the worst, which would be high grade and very limited in its options. Low grade, if confirmed, presents various options that will require consultation with an oncologist and other  experts all still yet to be faced down the line. So we keep it kind of open on this last stretch for a confirmation of low-grade status, and work from there when the time comes. Unfortunately I forgot to ask (though I've phoned in the question so may still get a response today), how long we can expect to wait on an answer on that second opinion: i.e. one day or does it have to be totally recultured? That would have been nice to know. As usual, time will tell. I'll let you know as soon as I know more. ♥️♥️♥️ I LOVE YOU ALL WITH ALL MY HEART!
 
Having a few tears as you might expect. 
 
For what it's worth, I've been having lowered feelings about the lymphoma possibility already, given the lack of any effects from the steroids I've been taking. Were it to have taken down some of the ancillary swelling there could've been some improvement in the visual symptoms, and given that that was not happening it's pretty clear the swelling was more a function of the tumor itself. Not that I'm an expert, but it kind of fit. So let's say it sort pre-softened the blow somewhat. 

Journal entry by Stephen Matchett

Hi - still no word on the biopsy, so that’s a little frustrating. However I did get a report from the head doctor here who tells me it was sent to Stanford which is why it’s been delayed somewhat. So at least I know where the thing is and that it’ll be known when it’s known. Covid wasn’t always a guarantee that things will go faster not slower! The surgeon hasn’t been back since Friday, not the greatest bedside manner. Then he had nothing to report so whatever. I’m not sweating it. 

Meanwhile, the charm offensive, as my friend Carol Cruikshank has referred to it, has been very calibrated and quite successful. That is, for wrapping myself around people’s finger and being positive and well liked while being just pushy enough to get what I need while not too much of a nudge to be annoying. It’s remarkable how people respond to a little positive reinforcement. I try to get to know people by name, not just the therapists and the nurses but the aides, janitors and food people. Partly it’s just fascinating, to get to know them in all their amazing San Francisco variety. Everybody is from a different place, getting to know their language and their story, is a privilege. OK, especially the cute hunky ones, of there a few special standouts, but mostly I’m pretty equal opportunity and talking about personalities of all stripes. There’s Moldova, Brasil,  Burma, Korea, to name a few, the Philippines of course, however that’s like a host of different nations - which language and island? and many times it’s not just Tagalog or Ilocano - anyway, you get the drift. And mind you, I forget the name after a second or so, but once asked you can always ask again and nobody minds, cause you’ve made a connection. 

I’ve managed to get my bed extended, which didn’t feel like a big deal but it really is a nice change. Also, the wheelchair I am using had these really funky brakes, that a mechanic finally came in today and took care of very smartly, which was nice.

Therapy has continued at 45 minute sessions, five per day, to each physical and occupational and one speech. That involves a lot of variety, physical involving walking, using my arms, stretching various directions and other motor skills; occupational, ranges from things like taking a shower to oh I can’t remember right now. And speech seems to be right now a lot of logic puzzles - right up my alley, I do those when I’m visiting home! The problem is (witness occupational a minute ago) that each exercise is great only you just get one or two times doing it before moving on to something else because they have so much to show you! There is a chance for sustained activity at times too. Mostly it’s really tiring though, and I just have to sit like a statue between sessions to conserve strength!

Oh I also moved rooms today, for their own logistical reasons, only the result is a quieter space and more of a view! So  things in certain areas are continuing to look up. (The only problem with a quieter more distant room being that sometimes it takes a little longer for them to respond to a request, however that’s where the charm offensive comes in handy!

I’ve developed this weird schedule with a breakfast before breakfast time, usually humus and veggie snack (the best, raw vegetables!) I’ve saved the night before, to have something in my stomach for therapy that can start before breakfast makes an appearance. Then another later in the morning, then lunch around four and dinner about now, so I’m going to eat a last time and go to bed. Good night my faithful friends all! You are an amazing support system that I will never ever again take for granted. Love you all - Stephen 

Journal entry by Stephen Matchett

A little of note to Damon and Landsly:

“The clothes and all arrived safe and sound - and the cookies 🍪 oh my god! I went straight for those, sesame chewies, whatever they are, a little piece of heaven! I'm saving them tho, only ate about half so far, to stretch them out!!
 
“Still no word from the surgeon today - now haven't seen him since Friday, tho he keeps odd hours, so still might make an appearance - however tomorrow more likely. Hard to be on tenterhooks like this... Good I've got all this therapy👩🏻‍🔬👨🏼‍🔬and meals 🥘 to distract me... Five 45 min sessions every day, two each occupational and physical, and one speech, spread over the day. And are they ever taxing: I come back from each short stint and just have to sink into bed for a while to get ready for the next! Could be because I'm still bouncing back from that two nights of almost NO sleep 💤 tho, we'll see if it picks up. Will definitely take another melotonin tonight. 
 
“And I had a real shower today (counted as an occupational therapy session, since any activity you do at home!) and was very humanizing. Well all except my hair, which still awaits the removal of surgical stuff a bit. Half human at least!”

So the waiting game continues. You are all my rocks. I am so fortunate to have you in my life! Love - Stephen  

Journal entry by Stephen Matchett

Can’t go quite so detailed about the rest of the day or I’ll never get to bed, and sleep is a priority since I got a pretty poor night’s sleep last two nights. No noise just couldn’t sleep. Suffice to say it was a work out, partly because they were all just sort of starting out so we had intake tests of different kinds from verbal skills to cognitive/physical stuff. I got to learn the wheelchair, and my way around the unit (including a great room with a view practically of my house!), Etc.  The big thing on my mind unfortunately is the biopsy result itself which was the start of this whole thing, and is probably becoming available tomorrow. Can’t think a lot about it because there’s not anything to be done until we know the answer. And then it could change a lot. Damon who I’m the world’s luckiest to now have living w me came wonderfully over with a few things I needed. Very selfless of him because you can’t visit just drop things off. Tomorrow he’s bringing some clothes, because they are having me dress each day -  figuring you have to get as close to real life as possible since they won’t be going home with you, ha ha. I also had to really face toda the seriousness of my impairment. I have a facial droop that may or may not clear up. And I’ve got some cognitive difficulties in addition to the super weakness of my right side. But we’ll see, it all can clear under the conditions, it’s just depressing at the moment! Time will tell. At least I have all of you long for the ride! Love and gratitude to you all! 🙏💜 Stephen 

Journal entry by Stephen Matchett

On Sunday, March 15, 2020, 9:21:41 AM PDT, Stephen Matchett <peacewithoutend@sbcglobal.net> 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 <peacewithoutend@sbcglobal.net> 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 <peacewithoutend@sbcglobal.net> 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 <peacewithoutend@sbcglobal.net> 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 <peacewithoutend@sbcglobal.net> 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 <peacewithoutend@sbcglobal.net> 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 <peacewithoutend@sbcglobal.net> 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. 
 
(And latest:) Eating decent lunch 
Stephen’s Story

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