Monday, July 20, 2020

Coated Tylenol, Skyhooks and an Elevated Foot

At the beginning of 1975 I was 13, a chubby kid and already a tormented Minnesota Vikings fan. I didn't have a Bar Mitzvah, but I was a member of a boy scout troop that met at a local temple. Our meetings were in the evening and at one particular meeting, our troop leader had us run races around the block which included a short cut through and alley. We had two races. For the first race, half the kids ran, while the other half ensured there was no cheating. For race 1, I was posted at a spot in the alley, behind the temple playground. As one kid ran past me, I took a small step back and right onto nail sticking out of a board that went through my shoe and into a bone of my right foot. Fortunately I was/am left footed, so the injury didn't mess with my kicking capabilities. Curiously, I am right handed, but have the absolute worst handwriting and I dribble a basketball with my left hand. I can barely bounce a ball with my right. I'm thinking someone early on, perhaps noticed I might have been left handed and changed me to right.

That nail into the bone caused a nasty infection that laid me up for the entire summer that year and generally impacted me for the remainder of 1975. Doctors opted against surgery to clean it out, but instead had me wearing a cast to immobilize the foot and had me keeping it elevated. When the cast came off, I alternated soaking it in hot and cold water. Eventually the foot mostly healed.

Later in 1975 the Vikings started the season 10-0. They were one of the best teams, if not the best, in the league. Fran Tarkenton was MVP.  Chuck Foreman was awesome and the defense was dominating. They lost in the playoffs to the cowboys on a last second hail mary pass. To this day, I hate, no, loathe the cowboys. Their receiver clearly committed a penalty and pushed off a Vikings defender to make that last second catch. The penalty went uncalled by the officials, because, you know, the cowboy "mystique". It was some real bullshit, I'll tell you that. That was one of the moments where I know exactly where I was one when that play happened. I was at my aunt's house, sitting in a restored barber chair. Also note that my aunt's husband let me smoke cigars. Curious in hindsight. But times were different and as they say, one doesn't inhale cigar smoke, so they're not as bad as cigarettes. So they said. I'm gonna go out on a limb and say that is probably not true. I'm also going to say it's surprising I didn't get addicted to nicotine.

Back to the summer of 75, my infected foot summer. Jaws the movie came out. I watched it at the Century Plaza theaters in Century City. They were state of the art and oh so plush in 1975. Across the street from these theaters was the Century Plaza Hotel, a favorite spot of Ronald Reagan. And two escalators rides down from the theaters was the Playboy Club. Several years later, as I approached my 21st birthday in 1982, I was hoping to go there. But it closed before I reached that milestone birthday.

Before Jaws was released, I read the book. It was one of several books that I read while stuck in bed with my elevated foot. It was my favorite read of that summer. I also read a few Agatha Christie mysteries.

A smell or taste can bring back very specific memories from the past. The catalyst for these 1975 memories (putting aside my memories of the Vikings cowboys playoff game which I probably think about 100 times every year) is Coated Tylenol. I took it for pain and to fight the infection back in 75. It had a distinct texture and taste that plain tylenol doesn't have. This morning I took two Coated Tyenol for perhaps the first time since 1975, and wow, it took me right back to the summer of 75, lying in bed and reading Jaws.

In late 2009, 34 years after the nail incident, my mostly healed right foot swelled up massively and I couldn't put any weight on it. It hurt like heck. X-rays showed a bone spur that had developed, probably to encapsulate the infection from back in 75. I had surgery in 2010 to remove the spur and I've been generally pain free in that foot since then. It still does flare up occasionally. Enough so that two years ago I went back to my foot doctor for a reevaluation. Custom shoe inserts took care of things. I hadn't seen that doctor since before myeloma, so he certainly was surprised to hear what I was up to. Leslie dissuaded me from telling the doctor about my theory that the 2010 foot surgery led to the release of dormant toxins that just a year later caused myeloma. There is zero science behind my theory. But can we rule it out completely? Also, coincidentally, in 2009 the Vikings again came painfully close to a magical, Super Bowl winning season. All Bret Favre had to do was fall down late in a playoff game against the saints.

Asking the same question, can we rule out my massive intake of diet soda and equal and aspartame as the cause of my myeloma? Actually, I hang my hat on that theory. But who knows. Also note that since the foot surgery in 2010, it's been non stop doctor's appointments and medical crap. Oh and also note, that since 2011, I haven't had a single diet soda nor equal. Equal I don't miss, but, wow, I really really miss having an occasional Big Gulp Diet Coke.

When I was first diagnosed with myeloma, we had challenges finding a treatment that worked, so I continued to get fevers, my kidneys teetered on failure and I was in and out of the hospital. Because of the kidneys, I had to be careful with what I took for my fevers. I couldn't take ibuprofen. So I had to take tylenol. I took a lot of tylenol in 2011. If I felt a fever coming on, I'd pop two tylenol. I could feel a fever on its way first with my ears and on the inside of my lips. They'd be burning up and that happened before a fever registered on the thermometer or before Leslie noticed I was burning up. I'll admit now that I'd try to take tylenol before Leslie noticed a fever was brewing, because I knew that if I had a fever of 101 or above, that she'd rush me to the hospital, which was the proper thing to do. But I hated, no, loathed the hospital. I'd do anything to avoid going, including downplaying how hot I was feeling. Was that smart? Um, absolutely not. Was I a good patient? Perhaps not always. More then a few days in the hospital was horrible for my mental state.

And during that time in 2011, while taking tylenol to mask my fever, I never took Coated Tylenol. Today might have been my first Coated Tylenol since the summer of 1975. I took it because I woke up super achy. It's not the myeloma, which is well under control. Almost four years on Darzalex. But since about March, one day a week, I wake up feeling particularly achy in the bones, joints and muscles, and lacking energy (Two naps today). Today was that day. Tomorrow I'll be perfectly fine. I have an appointment with a rheumatologist in a couple of weeks to see if it's something autoimmune related.

A small part of me thinks that it's nothing physical and that the aches, pains and lack of energy are mental, brought on by the lockdown and a feeling of total loss of control. Cancer took away some of my independence and freedom. But the virus has added a whole other level of feeling I have minimal control of what I can do. With myeloma, I have always felt like I could power through it and play a large role in the outcome. Conversely with the virus, like so many of us, it feels very out of our hands. Sure we can all wear masks and socially distance from each other. But with my crap ass immune system, I'm going the extra mile. Leslie is working hard to keep me safe and healthy. And while I know it's important, it's really hard to give up control and independence. Shades of the summer of 1975.

And as I write this, it's hit me that the Coated Tylenol this morning didn't suddenly take me back to the elevated foot summer. The past few months have been a real reminder, and without realizing it, I'm recreating some of the same coping mechanisms. Books, puzzles, trying to be creative, mentally checking out. I've been thinking about a painting of Kareem Abdul Jabbar skyhook that I did back then. It was based on a jigsaw puzzle. I've been looking on line for that specific puzzle, with no luck. But I have a perfect mental image of it. Maybe I should try to recreate it, to really bring things full circle.

A final note: We watched the movie Towering Inferno the other day. Cheesy disaster movies were huge in the 70s. And watching it was definitely a trip down memory lane. Turns out the Coated Tylenol was really just a tipping point for my 1975 memories.

I hope you all are staying safe and healthy, and wearing a damn mask!!

Sunday, July 19, 2020

A Calvalcade of July Posts

I've got little to say. So let's review 9 years of July 19 (roughly) posts.

July 18, 2011 24/7
 It's Monday and we're seeing Berenson, the myeloma specialist, today.  I imagine we'll be changing up the chemo drug mix and discussing next steps.  I am going to push for lots of stuff and lots of stuff soon. Bone marrow biopsy, kidney biopsy, start the stem cell harvesting process. I'm 3 months into this shit hole and it feels like zero progress has been made. In fact, it feels like the opposite of progress has been made. What's the opposite of progress? Crap, that's what. I think about this thing 24/7 now. The mental exhaustion is almost worse than the physical fatigue.

I'm not writing this post because I want some words of wisdom from anyone or any positive "atta boys". I am writing this, because I'm tired of it already.  I have this October date in mind for going back to leading a somewhat normal life. I've always been active, healthy and independent. My life now is anything but those 3 things. When everyone talks about "quality of life", are we talking about how I am living right now? Cause this sucks.  If it's October and I'm not improving, it might be time for me to emulate Marley in Marley & Me and find a tree to sleep under for my final days. I thought that was going to be a happy dog movie, but it sure wasn't.

Last night in doing some research on Berenson, I read a linked story from 2 years ago about a local, young police office and his brave fight against myeloma and how great he was doing. Curiosity got me searching how he is doing now....two years later. Two months ago...his memorial service. Awesome.

If my treatment changes and I start feeling worse, I'd imagine there will be a point where I can't work any more. Sure maybe I can collect disability, but how's that compare to working? It doesn't .  And cause of my medicines and treatment, I won't be able to waste my monthly disability check on booze and junk food. What fun is that?

I want Leslie to lead a normal life. She's living this 24/7 and is amazing. But how fair is that...she needs to do other stuff once a while.  I'm feeling like a burden and pity case to everyone.  I don't like being a burden.

Jan and Michelle had a bbq at their house the other day. It was very nice of them. I got a lot of hugs and "how're you doing?", all with that pity look in their eyes.  When leaving, one person said to me "don't be a stranger."  Ummm...ok. I don't see you often even when healthy. Weird. Awkward.  And the awkwardness likely comes from me. One of my best friends, Matt Arms, has been absolutely awesome during this whole time. But I worry that at some point he and friends will fade away.....24/7 myeloma conversation and new medicine talk will only take a friendship so far.  Family.....family is tricky even in the best of times. We're all trying to figure out how to balance the family concern/worry with what my needs are.  And like I've said before I need to get better at communicating and putting my foot down. 

So you see, October is huge. I turn 50 and that's my target for leading a somewhat normal life. And that's why today and this week are huge in my mind and I am a nervous wreck.

July 19, 2011 Dr B and the New Approach

Well, we saw Berenson yesterday. And it definitely gave me some hope. He talked about getting me to the point where I live a complete life....not quality of life. He was surprised we waited this long to change things up, given it was clear that doxil/velcade isn't doing anything. So he's got me on a whole different regime....starting today basically. He says we ought to see some quick results.

My kidneys worried him....more on that in a second. He couldn't believe that fuckhead Warner went on vacation, without following up with us. We need to be seeing a kidney doc once or twice a week.  But, other than my anemia and bad kidneys, he said you couldn't guess that I have myeloma. However lab work shows it progressing.

He sees no need to do a kidney or bone marrow biopsy. We have enough information already and need to go after the myeloma. He doesn't see the benefit of the stem cell transplant....that all you are doing is treating a symptom and not really killing the myeloma. His goal is to kill the myeloma. Leslie and I left Dr B's office feeling pretty good about things.

Then last night Phan called, we got the results from the morning blood work. Fucking kidneys....even more jacked up. We need to act quick and need to avoid dialysis. That was kind of a bummer. I was going to go to work today, but the plan instead is to see a kidney doctor this morning. Warner is absolutely out of the picture, so it'll be a new doctor who hopefully actually cares about their patients. Warner had me do the 4 day in a row saline drip and ran some tests. And then he never he followed up with us.

And I think that is the gist of yesterday. There's hope and hopefully I'll see progress in the next week or two. I need some positive results.

July 22, 2012 Maintenance
 Howdy all, Truly nothing to report. Started maintenance this past week. It's one day of infusion, every other week. Minus the treanda...which of course is the heavy hitting chemo drug. I have a new steroid that I take at home. And that's it. We watch everything closely. So I think I do full labs this weeek. And then monthly visits with Berenson. I feel good and the goal is to keep me where I'm at. Stayed tuned.

July 19, 2013 New Maintenance Cycle
 This afternoon was chemo. And that means dex. And that means insomnia, anxiety, irritability. Sometimes I'm ok with this. I'll use the wiredness to my advantage. I'll work out. I'll write. I'll plan. Not this time. This time it is pure anxiety and irritability. Wow. I've been doing some pacing. I did get a couple of hours of sleep, but that's over. I don't like to take sleeping pills, so I am kind of stuck. Whew wee....hold on everyone. In a couple of hours I need to get ready for work. I'll ride to work on my old univega. It's heavy as all heck, but that'll help burn some energy. Oh and I'm hungry. But I can't just eat and eat and eat. I worked too hard to get into shape. Plus I don't have any cereal in the house. Cereal is my favorite dex food. Dry. No milk. In a glass. Lately Puffins original or cinnamon from Trader Joes is tops. So good. Many many years ago, i had the best t shirt. It was a cereal shirt. A white t shirt with a 6 by 6 matrix of different cereals on the front. Loved that shirt!!!!!

July 26, 2014 Machine Mode
Marshawn Lynch is a running back on the Seattle Seahawks. When he runs, they often refer to him being in Beast Mode.  Yesterday as I was walking from my car to Berenson's office I decided I was putting myself into Machine Mode.  I finally feel normal after a month and half of surgeries, pain, chemo, fatigue and mental exhaustion.  But that's all behind me. I feel good. I went to the gym yesterday. First workout with the new port. And I guaran-fricking-tee that I'm not doing any exercise that might mess up this port. I've learned my lesson.  By machine mode, I mean that I'm focused. I'm focused on my fitness, on my nutrition, on my mental state, and I'm focused on being focused. I'm going to be like a fricking machine.  I just operate and that's all.

My labs this week were awesome. We saw a giant dip in my protein, paraprotein and kappa light chains....all my myeloma markers.  I had some drama with the lab (5th time in 9 months), where they didn't run the upep. The upep is vital.  It's taken from a small urine sample. In the past they've actually lost my sample and they've also lost blood.  Who does that?  Suffice it to say, I'm changing labs asap.  But this time, they didn't lose it, but they didn't test it.  So after a few phone calls and some yelling and some stress, they tested my sample and all is good. Of course, since the lab had issues, a small part of my brain thinks they fucked everything up and the numbers aren't valid.  That's doubtful, but it was a thought in my noggin.  Given my numbers, I figured for sure I'd be back on maintenance.  Berenson was very happy the results.  But he thinks since we had such a big drop, that we ought to stay aggressive and beat the myeloma down one more cycle. Then maintenance.  Dr B said if I really hated my treatment I could do maintenance. Sure I hate my treatment, but it's the dex I hate and that comes with maintenance as well. So what the heck, we'll do another cycle of the hard stuff (treanda aka bendamustine). Dr B also said that other patients are now on my regimen. He called it the Goldman regimen.  Hey, I'm somebody!!!!!!  The point is we are staying aggressive. We're putting myeloma on its heels. My foot is on the pedal. Full steam ahead.

I also talked to Berenson about my recent surgery and how we can keep my immune system up and not have me susceptible to viruses and such.  Leslie and I think that my constant taking of antibiotics can't be good for me.  That alone might impact my body's ability to fight stuff off.  But Berenson (as doctors tend to do) dismissed this. He said there are no studies that show long term use of antibiotics is bad. He also said that it's the drawback of treating myeloma....i.e. I'm gonna get shit.  We treat the myeloma first and then deal with the other things. I think all patients get familiar with this.  Another reason why I need to be in machine mode.  Machine mode with a Teflon coating.

Quickly I want to acknowledge two people. First is Leslie. She's done an amazing job as my caregiver and is vital to me being where I am with this myeloma. She's now acting as caregiver to her dad, who has a host of issues.  It's a tough situation.  I feel bad that she doesn't even get a chance to think about herself...to focus on her being her.  I think being sick has a guilt inducing effect on patients. Nobody, me included, wants to be a burden on anybody.  We want to be strong and not impact other's lives.

Second, a quick shout out Brad. He's the strongest and most focused person I know. He feels great but also has a challenging myeloma situation right now.  I have no doubt he is going to kick this cancer's ass, but let's all send positive thoughts to him.

July 26, 2015 Hit the Wall
It's been a while since I've wrote anything substantial. Just haven't been feeling it. There's nothing really noteworthy with my myeloma. But noteworthy is a relative term. And that's the thing with myeloma. Nothing going on doesn't mean we're kicking back worry free. In the past two months, I had a nasty cold that verged on pneumonia and hospitalization. We beat that back, avoiding the hospital, after finding an awesome pulminologist. I'd be lying if I said I didn't spend one night in bed wondering if that was my week to die. Then I lost a good friend to myeloma. Brad passing away is a tough one to move on from. Then I've had an achy back for a couple of weeks. Normally we'd let it go. But given I have myeloma, I've had to do a full body skeletal survey and bone density test. This Saturday is an MRI. Mind you, I'm claustrophobic, so this should be interesting. Also note, that my myeloma impacts my kidneys, I haven't had any bone involvement but the question is has my myeloma morphed into something else. Berenson thinks no and that doing bone surveys, etc is unnecessary. Phan on the other hand says we need to err on the side of caution. I am guessing it's nothing but we gotta rule bone issues out. And then this week I've been tired as all hell. It's a tired that is similar to the tired I was feeling right before I was diagnosed. So I'm thinking, ah shit, time to get off maintenance and attack the myeloma with one of the new drugs. But we did my full myeloma labs this week and all my numbers remain stable. That's good.  However I am hugely anemic, almost anemic enough to warrant a transfusion. I haven't had one of those in two years. Instead, yesterday I got a Procrit shot to bring my hemoglobin up. And through all this, I'm working full time, working out, crushing it and living life. Easy?  Heck no.

The summary: I'm still on maintenance, everything remains routine. A new cycle of maintenance starts next week.  All is good. But it's been a scary, nerve wracking, emotional, wall hitting month or two.

And that's myeloma. It never totally goes away. Every day, every week, every month is a challenge and a victory.
  
July 18, 2016 Does Incurable Mean Terminal

Hell if I know. I read the below article in the LA Times today. It reminded me of how when I was diagnosed, so many people and loved ones visited me and sent their prayers and wishes. I think we all thought, and that includes me, that I wasn't going to be around long. Looking back on that first year, it's quite surreal. So much I don't remember. Recently friends mentioned coming to see me at my house. I have no memory of that.


Now five years later I'm still kicking. As I mentioned, the Colorado training with my Kilimanjaro team was truly life affirming and life changing. Been thinking a lot about how I use the affirmation and change going forward. I'm not sure.

July 22, 2017 1 Week, 5 Days, 44 Hours
 This is it. Basically I'm done already . This week will be lunches, saying thanks to lots of people, continuing to leave files in an orderly fashion and on Thursday something is planned for me. Last week it hit me that I'm leaving and some emotions started to peculate up.

Early on in this cancer journey, battle, challenge, scare, what have you, I tried to keep going to work just to have a slice of normalcy and to not think about cancer. There were weeks where I'd be lucky to work 10 hours and that was a struggle. I've been back to full time for probably 3 years. It's time to hang it up. Right now my energy goes towards work and I need to redirect it towards myself. It'll be interesting and great. High 5!!!!!!!!

July 19, 2018 Getting My Learning On
 Don't get me wrong, myeloma and cancer suck. But I will say that since being diagnosed I've had the chance to meet some of the most passionate, caring and inspiring individuals. On Kilimanjaro I was with 5 other patients who are not letting the disease slow them down. And earlier this week I was in Boston to spend time with patients and caregivers who are so smart about the disease and so dedicated to supporting and helping others impacted by myeloma. I also got a chance to tour the facilities of Takeda Oncology where they make velcade and are working on finding new and better treatments.  I used to feel so out of place and not smart when I was with these folks.  But for the first time, I feel like I kind of understand what they're talking about. I've got a ways to go, but I am getting smarter about the disease. I'll try and share some things I learned in a future post.

July 14, 2019 Two Days in Myeloma-A Short Screenplay
                                                                                                                                      FADE IN:

EXT. PARKING KIOSK AT THE ENTRANCE OF A PARKING STRUCTURE
A car pulls up to the kiosk. The window goes down. From the driver’s point of view, an attendant slides open a window on the kiosk and leans out.

ATTENDANT
Good morning. It’ll be five dollars.

DRIVER
Here you go.
Hands over a card.

ATTENDANT
Will you be coming back tomorrow?
DRIVER
Tomorrow no? Friday, yes.
ATTENDANT
Sorry, if you were coming back tomorrow, it’d be 8 dollars for the two days.
DRIVER
Oh well.
ATTENDANT
Receipt?
DRIVER
Sure.

The attendant hands back the card and a receipt.

ATTENDANT
Have a blessed day.

The gate opens and the car pulls into the structure. It’s early enough in the day that his usual parking spot is available. It’s a corner spot on the second level, near the stairs. 

INT. PARKING LOT STAIRWELL
Matt is rushing down the stairs. A couple of years back he couldn’t make it down the stairs at all, too weak and too shaky. He makes a mental note that catching a deep breath on this day is a bit more challenging than usual.

INT. EXAM ROOM
Matt sits and looks at his phone. On the chair next to him is his hat and sweatshirt. He’s already weighed in and had blood pressure taken. There’s a gentle knock on the door. The doctor walks in, holding an open laptop in his hand. He has a serious look on his face.

MATT
Why the glum look doctor?
DR PHAN
Have you seen your lab results yet?
MATT
Um, nope. Usually I do, but not this month.

Dr Phan sits down across from Matt. He places his lap top on a small rolling table. He rolls the table so Matt can see.

DR PHAN
Ok, well look. A couple of things have changed.
MATT
Uh oh. Really?
DR PHAN
Yeah, see you creatinine? It’s gone up. And your m spike has gone up. How are you feeling?
MATT
Well, I’ve been more tired than usual. And the other day on a walk up the hills of Signal Hill, I had difficulty getting deep breaths. Kind of like when I first diagnosed.
DR PHAN
When did you do your IVIG? There’s no literature to support this, but my theory is the  IVIG can impact the efficacy of darzalex.

(IVIG is an infusion of immunoglobulins to help boost a patient’s immune system.) 

MATT
Well, I did only half the IVIG dosage last week, since there is a shortage. Seems like no one wants to donate anymore. But, you know,  I did labs before I did the IVIG.
DR PHAN
Well, we may want to start thinking about changing things up.
MATT
Yeah, I’ve been on darzalex for over two and a half years. Longest I’ve been on any drug.
DR PHAN
That’s a while.
MATT
Definitely I’ve been on cruise control.
DR PHAN
Well let’s do this. Don’t do another IVIG. Do your darzalex this Friday, then we’ll check your labs and see what’s up.
MATT
Fair enough.
DR PHAN
What else is going on?
MATT
I took a ceramics class. Here let me show you.

Matt grabs his phone and searches for photos of his ceramics projects. He hands the phone to Dr Phan.
DR PHAN
Nice. I wish I had time for something creative. What about the guitar?
MATT
It’s on my list.
DR PHAN
All right, well keep me posted. I’ll see you next month.

EXT. MARINE MAMMAL RESCUE - LATER THE SAME DAY

Matt is dressed in large waterproof overalls and knee high boots. He walks out of a pen, carrying an empty container. Inside the pen are sea lions, eating fish. Matt walks in to the break room.

INT. BREAK ROOM
Matt goes to locker and grabs his phone. He walks to a chair and sits and dials.

MATT
Hi, this is Matt, I’m wondering if I can get in to see Dr Berenson this week.
RECEPTIONIST
Sorry he’s busy all week.
MATT
He doesn’t have anything for a quick visit?
RECEPTIONIST
Afraid not. Plus he is leaving early Wednesday and Thursday, so he is jam packed.
MATT
Argh. Ok thanks.

Matt hangs up. He dials another number.

MATT (CONT’D)
Hey.
LESLIE
Hi. What’s up.
MATT
Can you do me a favor?
LESLIE
Sure
MATT
Call Susan at Berenson’s office and see if she can squeeze me in this week. I haven’t see him in a while and I think I should.
LESLIE
Yeah, let me check.
MATT
Plus. If he has anything, also see if we can get in to the kidney doctor the same day.
LESLIE
Will do. I’ll let you know.

EXT. PARKING LOT OUTSIDE MARINE MAMMAL RESCUE - EVENING
Matt is walking to his car. He makes a call as he walks.

MATT
Hello. I’m done.
LESLIE
Cool. Long day.
MATT
Yep, lots of animals here right now.
LESLIE
I talked to Susan and she was able to fit you in at noon tomorrow. And Dr Froch also had an opening tomorrow.
MATT
Perfect, thanks.

INT. EXAM ROOM - THE NEXT DAY
Matt and Leslie sit and wait for Dr Berenson. They can hear him outside the closed door, talking and walking back and forth, giving direction to his nurses and offering positive messages to other patients. Dr Berenson then enters the room, followed by a young scribe with a laptop on rolling table.

BERENSON
Good morning, good morning. How are we doing?
MATT
Pretty good, pretty good.
BERENSON
Hey, I like your shoes.
LESLIE
Ah thanks. Converse.
BERENSON
So what’s going on? Your labs all look good.
MATT
Um, really? Dr Phan thought he saw some changes.
BERENSON
Hmm. I don’t see it. How are you feeling?
MATT
A little more tired lately.
LESLIE
A lot more tired lately. He’s taking daily naps.
MATT
That’s true. And it takes a while to wake up from the naps.
BERENSON
Well, everything looks fine.
MATT
Even my creatinine and m spike?
BERENSON
Yeah, they’re up a bit, but I don’t think it’s anything to worry about.

Dr Berenson turns to the young scribe.

BERENSON (CONT’D)
You should have seen this guy when he first came in. How long ago was it?
MATT
8 years.
BERENSON
He was in horrible shape. We had to really get creative to save his life.
Berenson turns back to Matt and Leslie
BERENSON (CONT’D)
Listen, you’re doing great. Let’s not change a thing.

EXT. TREE LINED STREET - DAY
Matt and Leslie are walking down a steep hill to where the car is parked.

MATT
Well, that’s confusing. Talk about two different messages.
LESLIE
Sure is. I guess you just do your treatment and we’ll see what labs look like next month.
MATT
I guess so. Sheesh, that’s the thing with this fucking disease. It’s such a mind game.

They arrive at Matt’s car. Screen fades to black. A message is displayed: To be continued.
FADE OUT.



Thursday, July 16, 2020

Saturday, June 20, 2020

Ticking Away the Moments that Make Up a Dull Day

Every year is getting shorter never seem to find the time
Plans that either come to naught or half a page of scribbled lines
Hanging on in quiet desperation is the English way
The time is gone, the song is over
Thought I'd something more to say

Time by Pink Floyd

Every couple of days, I think about updating this blog. And every couple of days, I stop thinking about it. I either have nothing to write, nothing to say and close to zero interest in sitting still and trying to crank something out. Focus is hard to come by of late. And really what do I have to say? We've been on lockdown for a few months now. My immune system dictates I be careful. I very rarely leave the house. I'm not necessarily bored. I do a long walk almost every day and do some exercises at home. We're keeping busy but I definitely have more time for my idle mind to stray. I will say, I'm much more acutely aware of how much myeloma has changed my life.


Myeloma: My numbers continue to look great. Creatinine is 2.3, meaning my kidneys are chugging along. Light chains are in the single digits. On the other hand, for the past month or so, I've been particularly tired and achy. A bit reminiscent of my most recent relapse in 2016, when I made the switch to darzalex. I was scheduled for my monthly infusion two weeks ago, but in addition to the aches, anything I ate left a bitter taste in my mouth. I told Dr Phan on our telemedicine call the day before my scheduled treatment and we (he) decided to delay my treatment. His office protocol, for someone with two or more potential Covid symptoms, dictated that both Leslie and I do two Covid tests a week apart. He won't allow potentially infected patients into his office until they have two negative tests. In normal times, I'd have put up a fight but this time I didn't. He's protecting his patients and his staff and it made sense. My first test was fairly easy and not a big deal. Leslie, though, wasn't thrilled with her first test. That switched with test number 2. It was no big deal for Leslie, but for me, it felt like they jabbed my brain with the swab. Not pleasant. All the tests were negative. A delay in getting my second test results meant I had to postpone my infusion another week. With the added delay and since I hadn't been feeling well, I decided to do my myeloma labs again the other day. The results are in and my numbers still look great.

I haven't seen Berenson since the lockdown started. Given the persistent aches, I have an appointment with him coming up. He does a different blood test that tracks pretty well with how someone's myeloma is doing. I've decided postponed my infusion until after I see him. And I might just wait to get back onto my normally schedule, meaning my next infusion is in two weeks and I'll be back on schedule with a good friend.

Vikings: Just weeks before the lockdown started, the Vikings traded Stefon Diggs, their star receiver and my favorite Vikings receiver since Randy Moss. Then they re-signed Kirk Cousins, who's a nice guy, but maybe not the greatest quarterback. This broke me, after 50 plus years of Vikings obsession. I responded by doing a bracket style tournament to find a new team. The winner was the Carolina Panthers, mainly because they signed Teddy Bridgewater, who I wish, wish, wish was still the Vikings qb. But Carolina just didn't feel right as my team. So I chatted with my sister in law and landed on the Chargers as my team. They're local, cool colors, and are often underdogs, which I go for. This was going to be my direction. I felt really good about this. But I just couldn't let go of the Vikings. They had me at "Skol".  Plus my Vikings fandom has translated to a love of most things Minnesota, the 32nd state. It's a part of me and I can't abandon that. So I've gone back to the Vikings. But I think it was important to go through this process. We needed a break and now our bond is stronger than ever. I'll will cheer for the Chargers as my number two team. Growing up I loved the Houston Oilers. Loved! Then they moved to Tennessee and changed their name. Screw them. So I've been devoid of a number two team for decades. Now it feels good to have a one and two.

Lockdown: Leslie and I are doing good. We handling all this pretty well, she's diligent about keeping me safe. We both have mental ups and downs. We miss Gracie like crazy. I've pondered another dog, but I/we just aren't ready. She was such a huge and important presence. I can't imagine another dog moving in here.I like dog visits, but....

And then as I said, I've got too much free thinking time. And for the first time since being diagnosed, I'm wondering if this is as good as it gets. It wouldn't be horrible. I'm being creative, happy and healthy. But is this it? Feeling normal, doing normal things, etc, etc. Are these static?

Who the heck knows.

I hope you all are safe and healthy.



Monday, June 15, 2020

Sharing Covid and Cancer Stories

Leah Vann Tabitha Tow Burns