Started already: they get going on weekend even, yay! Have a schedule every day: today was already physical therapy 745 to 930, coming up occupational therapy 945 to 10, a break then speech therapy 1145 to 12, then another break then physical again 145 to 2. The breaks are important because it’s tiring and you have to do it in measured doses. Got to take a shower paren (aaah) and brushed my teeth at the sink for the first time yeah OK great, next one’s hear so gotta go.
Just getting settled at Davies. Thrilled to be here... and it’s the same great food from central kitchen on Van Ness. Did I mention how good that food has been actually? The last time I mention the food was the sugar filled peanut butter and graham crackers that was just to fill the space the first day. They actually have a great menu with build your own stirfry, build your own burger, build your own fajitas and lots of vegan options, so I’m happy as a clam! The only thing is that being over at Davies you have to order all your three meals the day before. I just got done doing that for tomorrow. But these are first world problems. I am so delighted to be here and to start on some serious rehab. And got here by the weekend which was my goal. Thanks Though the weekend may be a little light but that’s OK. There should be some therapy, and then an honest start on Monday. Yay. Yay. Yay. 😄 Love to all! And thank you thank you thank you for all your loving, heartfelt and sustaining messages. You are the light of my life!! I can’t say that enough!!
Surprise good news, moving to Davies today to start intensive rehab. This is great news because I get out of the hospital and into more intense rehab which is what I need. Thanks for all your support and more later of course. Things keep unfolding in an unlikely way, so I am blessed. Love for now!!❤️🙏
Davit added a little bit in comment in between, and here is my latest to catch up. I’ve had all sorts of mixup resulting simply from the stroke that I had with the biopsy. In other words the biopsy was pretty straightforward and we’re still waiting for the answer. In the meantime though I’ve had all these symptoms on the side that have complicated things and kept me in the hospital. I’m trying to get out as soon as possible since all hospitals are good for after a while is breeding infection. Hope to get to a rehab facility where we can spend a few days just focusing on physical and occupational therapy and then home for longer haul bc this is far from over. Also there’s the matter of the biopsy itself (oh that) which’s we might even have as early as tomorrow. Nothing’s ever simple! Thanks for all your support!!!
On Sunday, March 15, 2020, 9:21:41 AM PDT, Stephen Matchett <email@example.com> 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 <firstname.lastname@example.org> 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 <email@example.com> 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 <firstname.lastname@example.org> 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 <email@example.com> 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 <firstname.lastname@example.org> 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 <email@example.com> 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.