Trapped

Yesterday I drove to the VA in San Francisco for a PET scan.  I got there about 9AM and had an IV installed in Radiology.  I then signed in at Nuclear Medicine and sat down.  It was a busy day and a lot of people seemed confused and disorganized.  I wasn’t called until 11:00 and the tech said that should never have happened.  If I was there at 9:30, I should have been seen by 10.  When I got juiced up I waited for about 45 minutes [it’s usually an hour] for the juice to spread.  I was escorted to the machine and got comfy.  About 20 minutes into the scan the machine stopped; it usually only takes 25 minutes.  I was still inside the “tunnel” so I figured something was up.  20 minutes later the tech emerges from the control center to tell me we have a technical problem but it should be fixed in minutes.  A half hour later she manually slides the table out of the tunnel and tells me to bring my arms down “for a bit.”  I can’t feel my arms.   I am told to stay put as it will all be up in a moment.  There is another tech in the control booth.  After about 30 minutes I moan to anyone who may be listening,  “can I stop this now?” The tech says I can get up but can’t let me go because I am the property of the other tech.  The machine is rebooting.  The other tech arrives and I ask if I can leave.  She tells me to wait as we should be ready shortly and she’s doesn’t like injecting radio-active material into a patient and not having pictures to show for it.  At 3 o’clock she puts me back in the machine and I emerge fully scanned a half hour later.   I haven’t eaten in 24 hours; I can’t feel my arms: I have left Tasha waiting patiently for my return.  I decided to not stop for a burger at Mike’s and drove straight home.  The traffic was so-so.   Got home, fed Tasha and ate everything I could find.  Hen I went to bed.  It’s 4 in the morning now.  I’ve recovered.  

The Last... sort of...

It has been some time since I lasted posted here.  It has been a wild time.  The election ate up quite a bit of time and energy but it was all worth it.  We all do make a difference.  On November 6, Election Day, I drove to the VA for my last scheduled infusion.  I wasn’t an early bird that day.  I had to see to my good friends, Ziggy, Benson and Charlie who took care of me the previous night.  Their regular humans were off to see Ms. Barbra the night before.   I brought my computer [to follow the election] which proved absolutely useless as there was no coverage until that evening.  My oncologist and several of the nurses asked that I bring copies of the PD article for them.  After reading it, one of the nurses walked over to me with a tear in her eye and asked me if I had any doubt that I was well loved.  I have no doubt. Nada, zilch.  There was a bit of a problem finding veins that morning.  I think they have had just about enough and decided to hide.  After several tries by two of the staff I finally waltzed off to never-never land.  My drive to Oakland that afternoon took an hour and a half.  Brother Martin was making meatloaf and mash for dinner and we settled in front of the TV for the evening.  After my comfort food infusion I tried to remain calm as the results started to come in.  Slowly the joy of the evening grew and Ohio went to Obama by 8:30.  The last time I was waiting at Oakland Airport for a late arrival and it wasn’t called until 10 or 11PM.  I remember bursting into tears at that instant.  It may have been the happiest minute of my life.  8:30PM Tuesday evening made me quite happy too.  The next morning I stopped at Mel’s for French toast before reporting to the clinic.  I read the paper cover to cover really pleased with most of the results.  My day was short.  I was through by 1:30.  I was cautioned that since there was probably very little cancer, if any, left that I might experience a different recovery scenario.  I was also given a shot to stimulate the growth of bone marrow/blood cells as they would be hit pretty hard.  It was also suggested that I might experience some hair loss this time.  As I drove home I made a celebratory dinner date with Jim & Dotty at the new Bravas in Healdsburg.  We had a lovely time running into several friends and enjoying exotic taste treats.  The next day it hit me.  “Bone Ache” was the term the nurse used to describe the salient side effect of that last shot.  Well, I spent most of the day unsuccessfully trying to get comfortable.  I watched 8 episodes of “Spiral” [a brilliant and gritty, French crime drama], and didn’t think at all about eating.  NAUSEA!!!  The next day was much the same but less discomfort.  I knew I would be ready to party today.  I hope to see many of you out at Martha’s Vineyard [the local one] this afternoon.  As for the future, I have a PET scan on 12/17 for final confirmation of remission and then I start the maintenance program in mid-January [an infusion of Rituxan every two months for the next two years] after I return from The Palm Springs International Film Festival.

Before and After

On 1 October I sprawled my giant body out on a narrow table too short for my length.

After several adjustments [cushion under knees, ankles strapped together, head wedged into a foam form] I stretched my arms over my head and was eased into the scanner.  26 minutes later I emerged with aching shoulders and apprehension.  What was it going to show?  My oncologist suggested very good news but I kept seeing the first scam from several months ago.   I would wait until the 9^th to go over it with the doctor. 

Two days later he calls to say he could not wait until the 9^th.  He tells me it is everything he was hoping it would be. 

Now it is the 10^th.  The meeting with Dr. Mannis was a “joy fest;” I couldn't tell who was happier.   “The first thing we must do,” he tells me “is to gather some ‘show & tell’ props for your friends and family back home."  He lets me photograph the monitor and prints out B&W images of the before and after.   We then discussed prognosis and further treatment.  This is remission, not cure.  It is a remission that he is so excited about that he showed many of his colleagues the results.  He says it is rare to see such remarkable results.  He is excited and it is contagious.  I have this cycle [today and tomorrow] and a cycle in November [6^th and 7^th] and that’s it.  Sort of.   We needed to discuss maintenance.  After my immunochemotherapy is done, Dr. Mannis was recommending I follow up with Rituximab maintenance for at least 2 years.  This involves an 800ml dose every 2 months.  Studies have shown that the PFS [Progression Free Survival] after 2 years of the maintenance in patients with high tumor burden follicular lymphoma was 74.9% as opposed to 57.6% in those not undergoing the maintenance treatment.  I know this increases my likelihood of living longer but don’t quite have the specifics down yet.

I had my infusions today and was out of there by 2PM and am sitting at Martin’s & Dana’s with Emma [their dog] by my side.  I return tomorrow for another dose, a visit from a long lost friend and then home.  OH, yes!  Another bit of good news… The Infusion Salon now has WiFi!!!

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.