My Community

I wrote a letter to the local paper about a year ago about a community effort to facilitate the recovery of a dear friend.  I was so warmed by the instant outpouring of expertise, facility, labor and love that I suggested everyone should have such a network.  Never in my wildest dreams did I expect I would warrant one.  I am gob smacked. After two days of a miserable head cold I answered the front door about 8:15AM to find my front yard crowded with cheering friends, human and canine.  It was an impromptu flash mob brought on by my not going to the “bench” this morning.  It was supposed to happen there at the bakery.   As I stumbled down the walk I saw the crowd was spilling down the street.  There were so many faces watching me turn scarlet with embarrassment.  There was a loudspeaker aided presentation by several of the primary instigators and a lovely young woman from a local bank informing me that in addition to the big white present in my yard I was also aided with an emergency fund [with an astonishing balance] which resides at her bank.  The crowd parted to give me a full view of the “present.”   I am now the owner of a fine automobile capable of taking me to and from the SFVA with no worries.  My auto guru, on last inspecting my Beemer suggested it might not be wise to take it on long drives.  It was getting old [20 car years is 80 in human years] and as he could not find anything specifically wrong he advised caution.  My community knew I was in the market for a new one and had my eye on one in particular.  This effort had been going on for some time and I am surprised I did not see the behind-the-scenes shenanigans at all.  I was anxious about getting the car but didn’t want to push.  I can’t believe that over 200 people [many close friends that I see almost daily and others I see at least frequently] could keep this effort a secret from me.  “Ask Mikey; he knows everything that goes on in Healdsburg.” I am venturing out this morning, feeling that the worst of this bug is over and will see many of these wonderful friends again, in the usual surroundings.  But I will see them in a much brighter light as caregivers, supporters, guardians, providers, philanthropists, advisors, and advocates.  They are everything that friends can be and what a community should be.  Thank you all; I am so deeply moved.

Oh, yes; hand-written thank yous will follow soon.  

Breakfast in the Outer Richmond

I finally had breakfast in the Outer Richmond.  Joe’s seems to be the only venue and I was not impressed.  The reviews I read on Yelp did not hold up.  It’s a small greasy spoon with about 6 tables and a counter.  It sits maybe 20.  Piled everywhere are bags and boxes of their offerings, all pre-mixed bulk.  I had corned beef hash, two eggs and hash browns.  It wasn’t so bad but it’s so plain.  The elderly couple running the place made no eye contact and barley spoke.  He cooked and she took orders.   It is next door to Paul’s Hat Works, which was announcing the imminent opening of an additional location at Wingtip [550 Montgomery].  They had one of their Panama Top Hats in the window.  Very handsome.  

I got to the VA by 8 and was seated in the Salon by 8:30.  My meds were started by nine and I was finished a little before 2.  No Traffic!  Yay!

My next visit is the 1^st and involves the “atomic” juice PET Scan. Then I have an appointment with Dr. Mannis on the 9^th [with a stop at the Lad for blood work] when we will discuss the results of the scan.  I will then continue on to SFO for a PM pick up.  I return on the 10^th for 2 days of chemo.  That is repeated again in November on the 6^th and 7^th.  That may be it for a while.  I hope so.  I found I was quite tired when I got home yesterday.  After retrieving Ziggy and Charlie from King’s Kastle we fell asleep and slept through many phone calls all of which I will return today.       

No nausea! The picture of health.

Wednesday morning at my brother’s house in Oakland started with a nice fresh cup of coffee and kisses [and white dogs hairs all over my black clothes] from Emma.  I don’t think I will ever plan on what to wear.  I get up and my style demon says “Black!”  I have a reputation [ask the Walters] of wearing a white shirt whenever we have ribs or something with marinara sauce… anything that can stain.  I am feeling quite normal today, even after some indulgence last night.  Two dear friends from long ago came over for pizza and reminiscences.  Our dinner was accented with several wines and artisanal brews and capped with a little moonshine [ARK: the gift that keeps on giving].

My appointment with Dr. Mannis was very upbeat and encouraging.   My blood-work  was everything he’d hoped for and we discussed the remaining protocol.  I have a PET scan on the 1^st of October that, he feels, will show that the bulky disease in my abdomen is virtually invisible [I suspect there will still be some but I am stoked] and the others will have gone the way of the neck lump.  I forgot to ask about my spleen. Next time.

The treatment was the same and I slept through it all.  My next session is 10/11 October and then 6/7 November.  That may be it for some time!  If all goes as planned then I will be screened in 4 to 6 weeks spacing further apart as will allow to keep track of any recurrence.  More tomorrow.

NAUSEA!

Wednesday started out odd.  I wasn’t sure if I was hung over or not.  I did indulge the night before but overindulge?  I made it across the Bay Bridge at 6AM.  The traffic was heavy but I was at the VA by 6:45.  I thought I would stop for breakfast at a place that was recommended on Geary at 25^th [Joe’s?] but I decided I was not that hungry.  I went to the canteen and got milk, OJ, and a donut.  I couldn’t eat the donut.  NAUSEA!   Finally, I had an appropriate reaction to the chemo. I trotted off to the Infusion center.  I told George that I wasn’t absolutely sure that I had experienced nausea given my activities the night before.  He said I would know by the end of the day.  The pharmacy was very busy again and the meds came slowly.  I was released at 3:15.  I could not eat all day.  I drove home thinking I would stop at Mike’s for a burger but I drove right by.  When I got home I had a toes-up which lasted until this morning.  And I still don’t feel like eating.  I will see if anything clicks at the bakery.

Cream

Yesterday my Beamer broke down.  It’s being treated at the local car hospital.  Unable to be of service today I was offered the use of several vehicles but assorted ladies and gentlemen and I made it to the VA without a hitch.  Arriving rather early I set out to find some breakfast; I would be attached to my tree for most of the day so I figured a good start was a wise move.  I drove up and down Clement and Geary from 8^th Street to the beach.  Apparently no one in that neck of the woods eats breakfast.  Any ideas, readers?  I go back on the 11^th and 12^th of September.  Please suggest somewhere. 

After consulting with another oncologist [my regular was not there] I trundled off to the infusion salon to await my meds.  The pharmacy was quite busy and they did not show up until 9:30.  It was the usual; a saline drip, 2 Tylenol, a Benadryl drip, a hydrocortisone drip and then the rituximab [4 hours] and Bendamustine [1 hour].  I got out of there about 3PM and headed to the East Bay to spend the night at my brother Martin’s house.  We had dinner[?] at The Trappist, a small dark pub with a patio in revitalized downtown Oakland.  The patio is adjacent to the patio of a Mexican restaurant.  On Tuesdays the restaurant sells $2.00 tacos and $3.00 bean and cheese burritos that you can bring back into the pub and wash down with exotic ales, porters, lagers etc.  Rumor has it that the daughter of the owner of the restaurant married the son of the owner of the pub… something romantic like that.  Then we went to the Linden Street Brewery in a warehouse section.  There is no signage so you have to know where it is.  They have a Town Lager that is only available in growlers and kegs.  They wont sell it to you unless you take it away by bicycle.  Cream is on Telegraph Ave. 2 blocks from the campus.  I am told there are often lines around the block [especially late] but we did not have to wait.  You choose your favorite [warm] cookies [2] from about a dozen different kinds.  Then you choose your favorite ice-cream from about 20 flavors.  It’s served in a little bag and you walk away eating it before it melts.  Healdsburg needs one of these.

What can I say?

One of the most frequent questions I was asked on my first day at camp was, “Is it anything like you expected?”  It was not ANYTHING like I expected.  I was familiar with the location and some of the regulars.  I have, in the past, done some research on the event and its participants.  I have even participated in many of their functions/events both in the city and in the woods.  It’s the “woods” part that surprised me the most from a personal standpoint but the human dynamic was almost life-changing. Here I was a “camping” with over 2000 alpha males and the only thing any of them had on their minds was making sure that everyone, around them was having a good time. There were captains of industry, politics and entertainment.  Many were internationally recognized celebrities getting away from “celebrity.” Many were musicians and artists gathering to relax and enjoy each other’s talents.  There were folks with more money than god, and there were working stiffs with attributes that the club felt would enhance their cultural growth and humanity.  Few spoke of anything but the camp experience.  Discussions focused on what was said at one of the 3 or 4 discussions, lectures or presentations made at various venues every day.  There was music around every corner. The food was exceptional.  The environment is indescribable. In short, most of what you hear and read about the Grove is fabrication.  It is a private club, it has a valid reputation of being elitist [what private club does not?] and it turned this nature-phobe into a tree-hugger for one wonderful weekend.   Oh yeah, they/we do still pee wherever as long as it is not visible from central facilities were women are employed.

And BTW my blood work today was excellant; I don't have to go in tomorrow, and I didn't gain any weight over the weekend.

Round Two II

After a fitful night of trying to keep my arm straight and getting up every other hour and trundling down the hall to the common bathroom to eliminate the 6lbs of liquid infused that day, I woke exhausted and hungry.  Pancakes looked good and the view was great.  I got to Oncology around 8AM and George came in 5 minutes later and lead us to the infusion salon.  I asked for and got the Benadryl infusion right away and dozed off to never-never-land.  By the time I woke up Judi was installing the Bendomustine [I slept right through the rituximab! I bought some dried fruit the night before and snacked knowing Caroline was coming at one with a treat.  I was through by one, two hours earlier than the day before.  Judi had upped the drip rate because I tolerated it so well the previous day.  I led Caroline through the corridors to the “canteen” and we went outside to the picnic area for a petit dejeuner sur l’herbe.  It was not really breakfast but I love the image.  It was a glorious day with a spectacular view and witty and eye-catching company.  Being sick certainly does have some great perks!  I bid farewell to Caroline and the VA and managed to just escape the afternoon rush hour.  I got home and went to bed. 

My next trip back will be for a scan; sometime next week I think.  I will then meet with Dr. Mannis on the 31^st to discuss the results.  I return for another round on the 14^th and 15^th or thereabouts.  Then another scan, another consult and again until they feel that the “bulky disease” is sufficiently reduced to consider a reduced regimen or suspension of treatment.