Two weeks later

 Infusion number 2 went swimmingly!  I was out of there before 2pm, a record.  My white blood cells are back up to normal after a 6-month gradual decline.  This indicates that the chemo is working.  I am back on the Revlimid so coughing is back as well as some fatigue.  Blood work on 20 November and infusion number 3 on 27 November.

Back to my vacation...15 October was a great activity day.  We started with breakfast at Mi Cafe [Caroline's favorite].  We then went shopping and I purchased an old Huichol mask at the Olinala Gallery.

  This is a little gem of a place offering older pieces of indigenous art artifacts.   Wandering about we sampled beer & cocktails at Los Muertos Brewing Co. and Yambak.  Yambak is a three story bar-cafe offering 20 artisanal beers and excellent pizza.  The décor is graffiti inspired, playful and captivating.  The other great feature is the men's room with a row of urinals fashioned out of repurposed beer kegs.

We walked to the Zona Romantica and dined on world famous tacos at Sonorita Ollas Altas. They also serve an excellent rum-laced horchata.

I ended the day clocking well over 10,000 steps feeling no pain.

 

Back in "My Happy Place"

 On the 14th I headed south to Puerto Vallarta. In my second week of chemo I was pretty aware of some side effects.  Back in 2012, I had no side side effects... at all!  This time with the addition of the Revlimid I knew right away there would be some.  The most prominent side effect was coughing and it was chronic.  The second was was my equilibrium but that was minor.  It was most manifest upon standing but occasionally it hit unexpectedly.  I also found that I was more fatigued after walks.  

The afternoon we arrived we taxied to the condo [400 pesos] and got settled in. by the late afternoon we decided to walk to town for an early dinner and a stroll.  We ate at Pipi's which is on the way to the Malecon.  We polished off a couple of huge lime daiquiris, each.  Dinner was delicious and I remembered how well we ate in Puerto Vallarta for about 25% what the same meal would be in the Burg. Believe me when I say that the food is top notch.  The influx of aspiring cooks and established chefs creates a culinary atmosphere that borders on haute cuisine.

After dinner we walked to the Malecon which was bustling and lit up like The Strip in Vegas.  sat for a few minutes to watch the Papantla Bird-Men [Voladores de Papantla].  They climb to the top of a flag pole, tie their waist to a tether, start the platform spinning and fly down to the beach spiraling arounds the pole.

 It wasn't long before I realized I was intoxicated. Two Old-Fashions on the plane followed by two Daiquiris which were about 20 ounces each had me weaving and talking loudly.  We cabbed home and put our feet up.  About 9pm we were greeted by the familiar fireworks which go off every night from the "pirate" ship that cruises the Bay.  I slept like a baby.

#lymphoma, #puertovallarta, #pipi's

The Beach Chalet

 The Beach Chalet is one of my favorite restaurants in SF particularly because they do good fish & chips.  It is also a lovely historic building facing the ocean with nice views of the Ocean Beach and Golden gate Park and the Great Highway.

https://en.wikipedia.org/wiki/Beach_Chalet

Hooked up

 After driving for 2.5 hours through horrible rush hour traffic, I arrived at The SFVA at 8:30.  I'd p[lanned to have breakfast but now I didn't have time.  They had me checked in and seated in the Infusion Clinic by 9AM.  I did not have to see my oncologist which was odd.  They ordered the Rituxan and it arrived 20 minutes later and I was hooked up.

There were no other drugs this time.  They did give me Tylenol and a couple of Benadryl orally. The infusion started at 50ml per hour; after about an hour they raised it to 100.  There was no adverse reaction so they upped it to 200 within the next hour.  I had visit from my Oncologist so I asked if he thought I could go for the full 900ml in the one sitting. and he gave the nurses the go-ahead.  I was up to 200 by lunch-time.  Unfortunately, there was no lunch.  I should have packed a sandwich.  Note to myself for next time.  I did have a bag of gummy bears so that sufficed.  I was out of there by 3:30 so I headed for The Beach Chalet for fish & chips!  That did the trick and I was on my way home.  About 8PM I was completely spent and headed to bed.  I was awake about every 2 hours still quite exhausted.  I guess that was a result of taking the full infusion in one sitting.  I started on the Revlimib pills when I got home; they were delivered that morning.  Revlimid is the brand name for Lenalidomide which "exerts immunomodulating effects by altering cytokine production, regulating T cell co-stimulation, and enhancing  the NK cell-mediated cytotoxicity."  Basically it stops cancer cells developing, stops blood vessels growing in the cancer and stimulates part of the immune system to attack the cancer cells. The side effects are myriad, but considering how I react to drugs I am confident that I will not encounter any.

The eyes have it!

 The self improvement regimen continues with an additional surgical procedure.   I have signed up for cataract surgery'  Hopefully I can get it scheduled in the next month.  They tell me there are no contraindications with my Chemo so I figure I might as well get it done now that I'm into medical exploration mode.

I've had about a half-dozen appointments leading up to this point.  Pleasantly, I've been able to do all this within the Santa Rosa VA system.  The next appointment is at SFVA to "measure" for my "replacement lens" and then the surgery, again in SF following in about a week if all goes well.  I'll spend 2 days at SFVA as the doctor needs to see the patient 24 hours after the surgery.  I will then be permitted to drive home apparently without an eye-patch.  Amazing, huh? 

Treatment

 I just talked to the Oncologist, reviewed treatment options and decided on the protocol and did preliminary scheduling. Now I have to notify those affected by that scheduling.

The details, briefly, are two-day chemo every 4 weeks  at SFVA infusion salon [my name for it as it sounds so continental😎] staying at the Hoptel on the Ft. Miley campus.

I wlll be given rituximab [Rituxan] and the usual cocktail at the salon.  I will also be on a daily pill, lenalidomide, Revlimid, for 21 days with a 7 day break and then another 21 days until it is no longer needed.  I will also be taking acyclovir if needed.  I don't think I will be needing it as it is use in treatment of Herpes, shingles and chickenpox. There is a long list of possible side affects for all of these but I have been lucky in the past, so fingers crossed.  I am scheduled through February.

Biopsy Results

 The results are in but I'll be damned if I can make anything out of it.  Acronyms galore speak of ranges, high, normal and low counts low counts.  A couple of things i recognize from the past is platelet count and immature platelet fraction which are both low. I'll just have to wait for the Oncologist to call and pass sentence.  

Meanwhile, I am in the middle of scheduling cataract surgery and I have an initial Pre-op appointment on 20 September.  Looks like it will be pretty quick scheduling.

Last bit of news is I was called up for Jury Duty for the the week of October 7.  I called about postponing it expecting a hard sell. The woman I spoke to was great.  She immediately canceled the summons and wished me well.  That eliminated a great deal of anxiety: who would have thought it could be so easy?

My charges are keeping an eye out for me

The Prep

 Driving for 2.5 hours to get to Palo Alto in rush hour left me a bit anxious. I parked by the Defenders Lodge where I was told (erroneously) I would be spending the night. It's clear on the far end of the campus.  I'll be spending the night in the hospital, checking out by 6am.  I will be provided lunch, dinner and an early breakfast. 

I've been hooked up for

an IV and now I wait.

How to follow a blogspot blog

 https://www.wikihow.tech/Follow-a-Blogspot-Blog

PROGRESS

On 28 August, I will drive to the Palo Alto VA Medical Center for a 9:30 appointment  for a CTScan- guided tissue extraction in order to biopsy the disease.  They hope to determine if it is the same form of Lymphoma and that it has not "mutated" whatever that means.

After the procedure I will check in to their overnight facility [I am not permitted to drive after the sedation] checking out at 5:45am on the 29th and driving home.

I should now the results with in a week.  The appropriate protocol with be chosen and treatment will be scheduled.

 The Journal Breakdown

A few years back I came across an old journal. I started to write it out, sifting out the stuff that made no sense.  There's plenty here that makes little sense but triggered a memory I intend to explore later.

This is the first installment.

5250 Lindhurst Ave. Marysville CA 95901

12014 Thome Road

Marysville  Jan. 1975?

 

Jan. 15 1974  working at Monkey Wards

Listening to Hot Cakes, Jan Ackerman, Yes

Seeing a woman named Lois

At Rooney’s getting drunk with Penny, Don and Kathy

Dinner at El Zarape

Ken & wife, Leonard, Cheryl, Michail, Diane, and Jean Then Mary, Bobby, Rich, Carol & hubby, Debbie & Larry, Rick, Mike, Eve, Tony & Paula, Bill & Penny, John & Sue, David, Ada, Ed, Butch & wife.

Again at Rooneys; saw Berta, Rosie & Roxie

Also Mike & Phyllis, Glenn, Mimi, & Jewell

Copied a poem by Leonard Cohen “Gift”

Jan. 31 1974 Cheryl’s birthday , she’s 21

M. Frog, Jean Yves Labat

Bearsville 2140

The Tain

Went to see Voorhis dance

Feb. 15 Ron, Paula & I messed up on wyamine

1 Mar.  Willy visits

April 23 Sat. nite I got throwed in jail.

Sharon 5556 Foster Road Paradise

Dennis Liptrot birthday 8 may, Claudia’s was the 2^nd Dana’s was the 7^th.

Jean Roche Sauer

 

Every few years I encounter a writer that makes me swoon.  It’s akin to the Stendahl Syndrome but without the imbalance, the weak-at-the-knees, and the temporary disorientation.  I almost exclusively listen to books now, driving taking up half my life. I generally like the chosen readers on most offerings from Audible and on that rare occasion enjoy the author reading their own work.  Peter Schjeldahl delivers as perfect a listening experience one could hope for.

Hot, Cold, Heavy, Light - 100 Art Writings 1988-2018 is as pleasurable a read/listen as anyone could hope for.  His voice is old, wise, kind, and clear.  His knowledge of art, and I assume his experiencing art, is mind-boggling.  This collection is mostly criticisms written for The New Yorker, Village Voice, Seven Days and maybe one or two other publications.  Some are very short, some are quite long.  He is occasionally dismissive without ever being cruel but most of the time he borders on rapturous.  I got the impression that he chose to critique only those who truly impressed him.  His prose is flawless and completely accessible to the average gallery/museum goer as well as the “art nerd.”

Read this. You won’t be sorry

 

15 August 2024

12 years ago I was told by my oncologist that he was fairly certain that the chemo had done its job. I was scheduled for a Petscan which would likely show no trace of the disease.

 

The left image was the original scan showing the extent of the cancer.  The right image was about 6 months later.  Some of the black in both images shows organs that that normally appear this way.  The brain, the kidneys, the oval in pelvic area and a couple of little dots [I can’t remember which organs they were but they are supposed to show as black.  The rest of the black in the left image is cancer. This is what Stage 4 looks like. I was told there was a tumor-load the size of an 8-pound fetus in my retro-peritoneum.  That’s smack dab in the middle.

12 years later, due to the passage of time and some anomalies in my bloodwork I was scheduled for another Petscan.

Insert here

The new scan shows the present extent of the cancer, again Stage 4.  The spread is extensive, into my kidneys, spleen, lungs and more.  Not what we were expecting.

Folicular B-Cell Lymphoma grows slowly and it’s probably been growing for quite a few years.  Next time, if I survive this one, I will request a scan every couple of years lest it gets to this point again.

Here is some info about the disease.

FL is the most common type of low-grade lymphoma, accounting for 20–30% of all NHL cases. 

 

FL is usually slow-growing, but it can sometimes grow quickly. It's often found in the lymph nodes, but it can also occur in the bone marrow, spleen, liver, and peripheral blood. FL is more common in older adults, with a median age of 55, and is rare in children under 20. It's also more common in Caucasians than in Asians and African Americans, and exposure to pesticides and herbicides may be a risk factor. 

FL is usually not curable, but it's often treatable and can help patients live for many years with a good quality of life. The goal of treatment is to put the patient into remission, where the amount of lymphoma is significantly reduced. Treatment options include targeted therapy without chemotherapy, active surveillance, or delaying treatment until the lymphoma starts causing problems. 

Healthcare providers can diagnose FL using several tests, including:

·         Biopsy: Taking lymph node tissue samples to test for signs of cancer

·         Positron emission tomography (PET) scan: Observing cancer cell activity and establishing a cancer grade

·         Computed tomography (CT) scan: Monitoring cancer and evaluating treatment response 

 

Originally, they were going to surgically remove a node from my groin but when the surgeon examined the scan he determined it was not a good idea. 

I am now awaiting an appointment for a CT-Scan guided tissue extraction.  I had one of these 12 years ago in order to determine the specific type of cancer.  They’re doing it this time for the same reason but also to see if it may have mutated.  I have no idea what that suggests. I’m in a holding pattern right now.

One thing that I am certain of is none of this is going to interfere with my week in Puerto Vallarta in October.