Journal

Journal entry by Stephen Matchett

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!

Journal entry by Stephen Matchett

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.

Journal entry by Stephen Matchett

It’s always something, got this one though. I am writing this on my notes, to transfer over to a blog post, as soon as I can figure our on how to do my owner post again! I’ve been shut out for a couple of days! Like I said, it’s always something! I think I finally figured it out though and am  back on!!

 

I wanted to tell you about the wonderful new person on my care team who I met a day or so ago. She is the palliative care nurse assigned by my new doctors, who’s in charge of getting me appropriate end of life documents and that sort of thing (mine was one I had recently canceled because it still had the name of my partner right after Calu, who is no longer in my lifer.) Anyway, she went to George School, which where  my mother went to! Not only that but her cousin was a class behind her, and Judy remembers her name, Amy Paas! So when we made the connection and had kind of a nostalgia fest going to know each other, because she and I actually know a bunch of people in common. So if you hear me talk about was Liz Bloom, that’s who. A member of my care team who also happens to be a classmate of my moms - well, thirty or so years on! A nice Jewish, Debufant, Quaker girl, I could tell right away.

More to write about later, only it got later again!

Journal entry by Stephen Matchett

Ready for the latest? Well first picture (I think you’ll see it at the bottom of this post.) 

Nurse's idea, guess which one - my dear Iluviano (great example of the operation of the niceness offensive played just right) - anyway, a really good one, both the idea and the execution. (He’s a great hair cutter to; too bad he’s married.) To get out ahead of any hair loss and make it all your own. I'm surprised actually, pretty debonair no? What I'm really surprised about, and kind of jazzed, is some areas on my scalp that I assumed were kind of  irredeemable looking, and are hardly noticeable at all! There's a future for me and short hair that I didn't think was possible!

That wasn't the important information I had to give you though, which is that they have decided here, and more importantly my insurance company agrees, that I should not go home for the _entirety_ of my first 30 days' of carbon treatments, if you can believe that! Phew! Talk about a relief for both Damon and myself.

Bad news is I'll be on a different unit, with probably a shared room: the skilled nursing unit, in the tower across from me, like three south or something. Ellen Flanders was there for a while, so I've actually even seen it! So it’ll have less space and privacy than I’ve been used to, so hey, another of those first world problems I keep having to overcome. I really think I should complain to the human rights commission, no?

I may get moved as soon as tomorrow. Also starting tomorrow is my 30 days of radiation treatments. I went over yesterday to get a mask made and a CAT scan done, that’s the prep work, and tomorrow I start going to a daily appointment, around mid day because that’s when they can fit me in Which I will unknown and known amount of radiation poured into my body for an unknown amount of time but I think an hour or so (I’ll find out a lot more tomorrow) . The drive between hospitals goes right by my house if you take fell in Fillmore and fell going back,  The nice drivers actually did yesterday so I got to see my house! I’m not going to make them do that every day because it’s actually about the slowest way back, but it was really fun to see that whole stretch of Fillmore from Washington Down to Fillmore! And nice of them to indulge me.

Let’s see, what else before I close? Oh yeah, I’ve just been tested for COVID-19. That’s because they test anyone entering skilled nursing since 
 that’s all their most vulnerable people. So I am now officially plague-free! That would’ve been a real setback of course since it would have meant everything going on hold for 14 days quarantine. Yet (A) it had to be done (and don’t even get me started about how should be available for everyone like yesterday!) and (B) it was highly unlikely I had it, since I was completely symptom free. So maybe I’m the first person you know who is officially without the virus. Ta da!

The day is done and tomorrow is another. You are a big part of mine, I know that. Love all of you ❤️ Stephen

Journal entry by Stephen Matchett

I am definitely feeling the love, sort of to answer everyone who has mentioned it. It is there, and it is big time. It is a huge part of my consciousness, and my inner and outer support and strength! It is definitely keeping me going, so keep it coming, with or without words!! I am so humbled by your love and companionship.

As things enter a new piece of territory, I can anticipate needing it all the more. So, sorry mates, your job is not over yet, rather it is just beginning!

Finally, a little note about email: I was bumped off my account for 24 hours and just got it reinstated today, so if you wrote something in the last day or so to that address, I’m just getting a look at it right now. Happens sometimes when your brain gets fuzzy. Let’s just say email wasn’t designed for people with brain tumors.  Who knew? Don’t stop using it though, I’m still using it myself!

Journal entry by Stephen Matchett

Setback I guess you could say. Damon was here all day, which was nice just for the visit and all. Yet we didn’t get a whole lot done because I was too out of it, and Damon was wondering whether I was really ready to come home. By the end of the day, they’d scheduled another MRI and got it done on my brain, and it indicates that there has been more activity on the tumor, in other words it wasn’t just sitting,  it was having some activity. So the plan now is to be more aggressive with treatment right away (duh!). It actually is good of course that this was discovered before we just made a plan and went home, and what it’s going to mean is we may start the radiation more like right away then in a week or two. I am also not likely to be going home, at least not as soon as this Friday, however we’re going to see what that’s looking like as we re-examine things tomorrow. Never a dull
moment!

Journal entry by Stephen Matchett

I guess there’s no excuse to do this entry tonight then. I’ve just been given 12 extra hours in the day, I kid you not. What I mean is, I was literally 12 hours ahead of time, I thought it was the morning, at around 8:30 a.m., Damon was about to show up and spend the day, which is the plan tomorrow, and it was really still just the night before! Proof that I’ve just been getting way too little sleep! Until something slipped today, and I actually spent a lot of time catching up on sleep. I even slept into a number of my  therapy sessions. So I guess I learned my limits a little, and  did some corrective action. I spent some time sleeping today  which was kind of new, and I think I’m catching up. 

Things have been getting a lot more real, as far as the getting ready to go home. Besides Damon coming over for our day of family training tomorrow, there are the couple of pieces of equipment I’ve ordered: a bathroom chair, and a shower chair. I even managed to do the bathroom chair through a vendor other than cursed Amazon. Had to do the shower chair on Amazon though, because the therapist did a lot of research on that one, for one that would have all the right measurements, and that’s the one she picked.  I’ll forgive her somehow. 

To bed! I can’t stop telling you how important this is to me. You are like my particular holders of the flame.  Please keep sending your witty, wonderful contributions. I love them all just as I love you! Stephen 

Journal entry by Stephen Matchett

Well yesterday was D-day, diagnosis day. At 4 o’clock, I got the call from the doctor here, who, as promised, got to me as soon as he heard from Stanford. He gave me the data down to the last test they ran and what the results were, however with no independent knowledge or interpretation of his own; in other words, he was just transmitting information about which he had little or no background. So, the next logical step was to hear from the  neurosurgeon, right? Well, he didn’t call right away so I called him and left a rather urgent message that I had received the  much awaited test results, and would like to talk to him, duh. “Oh, sorry. He’s left the office for the day.” (This is about 4:30.) “I can leave him a message that you’d like him to call.“ I also leave the same urgent message with his assistant, who also assures me he will communicate it. Then the assistant suggests, “you can always go online and start researching it yourself.” I tell him that’s a really stupid suggestion, and kind of rude under the circumstances. That really it’s the surgeon who knows what the tests are showing in detail, and the least he could have done was to make sure that the patient had a call so that he could start making sense of the results, kind of obvious no? 

So I spend the next few hours sitting with this information, trying to decide how much to share with my family members, whom I had intended to tell right away, though without any help from the experts. Or if it even makes sense to tell them anything at all before I get some kind of frame of reference. Finally, around seven, I decide to give my parents a call despite the relative information vacuum, and give them what news I have and let them stew right along with me. I get my dad, and he says, “We’re just sitting down to dinner,” can I call back in half an hour when both of them will be by a phone and can talk? Mind you, this has never happened before. Are you almost say no, I have something important to share, but then I think, hey, no harm in putting it off half an hour, why not, since it wasn’t how I wanted to have this conversation in the first place, so let them eat in peace and we’ll talk in a bit. I hung up the phone, and literally two minutes later my phone rings, and it’s… the neurosurgeon calling me back, after only three hours of wondering whether I’d be hearing from him before Monday! So he was still on the job, and we did get to have a lengthy conversation in which I asked him all sorts of questions and clarifications, and he gave me all that he was able to explain from his point of view. We also talked treatment options and how that would look in the coming days and weeks (and beyond). So I am grateful a million times over that I let my parents take their dinner break when they did, and that for whatever reason my dad knew the call needed to wait. Because when I called them back a half-hour later, it was for a much different conversation than we would have been having blind! So, another of life‘s little amazement’s.

After that, I called David and Kathy, who did a little dispatch right away to the rest of the family, and then I called Damon, and then Lary Darby in Seattle. So it was a little bit of a night. This dispatch comes today. Enough suspense yet?

The good news: it is not high-grade. The bad news: neither is it low-grade. It is in between. Usually they diagnose you (your tumor that is) as a one or two, which is the designation for low-grade, or four or five, which is high. Mine I kid you not is a three, intermediate status, which they  generally don’t use or see, and kind of don’t know what to call.

The tumor is an “anaplastic glioma.” That is not the type they were trying to reconfirm from the first test (whose name, some other type of glioma, I didn’t bother to memorize because it wasn’t necessarily the right one), which was of the hoped for low-grade variety. Significantly however, it is not a glioblastoma, which is the type that is a high-grade designation.

If you looking at averages, which is sort of a treacherous way because there are so many things that affect outcomes that have nothing to do with the averages, then they are saying that a low-grade has a prognosis of anywhere from 5 to 20 years, and a high-grade more like 1 to 2. Then on that scale an intermediate tumor is something like 3 to 7. But the whole point of treatment is that everyone responds differently. So I’m just giving that out in the interest of completeness, as part of the information received. 

Treatment options appear to be pretty much the same as for a high grade glioblastoma, however with apparently a better chance  of success over time. This will involve both radiation, which is used in all cases, and a significant amount of chemo as well, which is less a factor in low-grade treatment. I will get assigned both a regular oncologist, who will be like the quarterback of my team (ugh, I hate those athletic metaphor, sorry), keeping tabs on all parts of the process, and a radiological oncologist, who is more like a surgeon or technician and handles the radiological stuff exclusively. (And apparently gets to have zero bedside manner, which is left all to the oncologist. It’s remarkable how they split up the functions!)

The earliest I’ll probably meet with these guys is a week or two. And what with Covid19 (oh yeah, remember that little complication?), it will probably be by phone conference, not in person, though that’s not certain. So in that sense it’s more waiting, however, as before, I’m just as glad that the next week (literally, my discharge date is next Friday), I get to simply concentrate on therapy therapy therapy, which is exactly what I need right now, and am getting in spades. Once I am back home and getting settled in, that’s when I can start thinking about my treatment plan.

I won’t go on right now because I really want to get this out to you. It’s almost noon. (And I’ve got some therapy coming up so I won’t have time!)  it’s not like I’ve shared a lot of emotion with you, just information, which I’m good at. Maybe more on the feeling side later. Love to you all. Not the best news I know, and not the worst either. There’s something fitting about having come down right in the middle!

Journal entry by Stephen Matchett

Sort of news at the end of today: Stanford might get its act together tomorrow and have an answer on that second test it’s been working on. (If not, then Monday.)  They said something about “finding the missing image“ they’ve been looking for…  first I’d heard about that. Something they lost? The test they sent out for yesterday? We may never know. At any rate, the head doctor here is in touch with them and will let me know what he knows as soon as they tell him anything. In theory I should be talking to the neurosurgeon again too, since he initiated this whole thing and knows the tests so far and what they are about. I thought this was a drawn out process, then Kathy reminded me today that Chris’s tumor underwent a similar back-and-forth, when his slide was sent to Washington DC for further testing, and the final results didn’t come back for about two weeks. So I guess I’m not special. Hopefully it will mean they have the thing refine to such a fair thee well that there will be a very precise treatment plan available, i.e. not a lot of thinking necessary.

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

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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