Just About The End

Tried setting up message groups iPhone to cut down copy and paste.  Did work well and difficult to add people. Full information here

Trying again. First apologies for the time of messsge.  I know it is particularly early for the west coast.  I need to conserve every bit of energy at this point.  I would usually ask if okay to put you in or out.  Everyone is cool in this group so I figure it is okay 😀. Hey if you are my friends or family, we know you are off

Second Apple is driving me nuts trying to set this up.  Please let me know who I missed, it probably is unintentional, hit a limit I think so hoping people will let others know in their family know 

Last night was bad.  I was tired from not sleeping the night before and wound up napping.  When I woke up I was okay but started getting congested. Coughed up a good amount of blood. Whole show.  Bad. 

 You can see posts this morning on Instagram.  Did not realize how bad.  

They did X-ray last night.  Pneumonia and infection again. On antibiotics and trying to get drained again. 

Oncologist came in today. A real charmer.  Oy.  Anyway though they will do everything to keep me going now, no more treatments for the cancer.  I would not be able to survive  it.  Same thing for intubation.  

Would probably not get off and all it would do is increase the pain you guys go through about seeing me/knowing I am on intubation. 

The plan was to get me past this and start Keytruda.  They will not let me do that.   I could try outpatient, but it sounds like I have just slipped too much.  

There could be some could have/would have from almost the last dozen years.   No one should get bogged down in that.  I have had a great life with a wonderful wife, brother, nieces and nephews, cousins, families and friends. I have done so many wonderful things.  And though this last year was not fun, I did damn well the first 11 cancer years.  

The amazing trips to California with Sandrah to see the Yankees and Whales, triathlons, Las Vegas, Israel, becoming a photographer for a professional baseball team and got a life saving award for a EMS call I did while I had cancer.  From the good old days. Rock and roll photographer. Writer.  DMT.  

 So many cancer patients would absolutely love to have been in my condition. It would be so tremendously wrong to complain.  Just like it would have been wrong to not to try to do things to stay alive - treatments waiting for the next treatment - my "kick the can" and doing whatever I could to stay alive. 

Same for my life.  I have hung out with the Dalai Lama, danced with  Diana Ross, helped people with charity. Have had my own company with my brother which let me do whatever I wanted whenever I wanted, including scuba diving with Sandrah.  So many great trips and we had the chance to see our videos on a HD movie screen twice for underwater contests. 

I am not sure how formatting above is. Sorry 😉

Obviously I don't want leave the world and want to try to keep going.  But it may be time.  The oncologist said I won't survive this admission.  

So anyway I am supposed to not talk and to rest as much as possible.  Good luck with that.  I do want to text everyone, but putting updates on health in this makes it easier than all cuts/paste as I try respond to everyone, which I love doing and which I love hearing from. So a quick check in this group may give some information you would ask about.  If you want to leave this group, the only thing I ask is let me know, I may have another to add.  Hot ticket you know lol

Now going to see if I can get nausea medication for the Giants game.  That is one of the good things about cancer, I can get Zofran (no I am not nausesous right now.  Standing death's door and I can still not turn off the great Joke Machine that I am.

2025 Went Fast

 

I owe replies on my last post. All the comments mean a lot to me. That being said, a bit of an update. The new rehabilitation facility is good. One of the docs here specializes in pain and PT/OT. His first visit was over an hour. He did a complete physical on me. My right is a spot of incredible pain. I have tumors in my hip, back, and spine. He began checking my right hip. He started pressing. No reaction. He pressed another spot and said “This hurts here, right? “ I yelped “Yes”. He kept checking and knew which press would hurt or not. He told me he had a pretty good idea the pain was from the bursa and related damage, and not the cancer itself. Between falls and other things it was a possibility. He recommended a cortisone shot. So this Friday I got the cortisone shot. My pain is basically gone. My brother said the difference in my pain before and after the shot is obvious. Anyway, I have been doing my best with PT/OT. In order for me to get back on cancer treatments, I need to be at the physical condition I was a couple months ago. I have gotten to the point where I can roll over and sit up on side of bed without assistance. Then I progressed to getting into wheelchair with some help. Then yesterday they got me standing between parallel bars - i held the bars and had some assistance. After that they rolled my wheelchair in front of the elliptical bike/hand pedal machine. I did 15 minutes. And got my HR up to 115. This was big. Each day of a new accomplishment helps. Then improve the accomplishment - turn standing 15 seconds to 30 seconds- then add another accomplishment. Got my plan laid out. Hoping to look back in a couple of months and seeing how far I improved.

World Cancer Day A Day Late

  

I am a day late for #WorldCancerDay But since I just got further details about what is on deck for me, this is the up-to date information (and I need to backfill from October at some point 😀)

Just got done with the telehealth with the proton center. They are calling a prescription in for steroids now.

On the new tumors - these two grew real fast from nothing and he wants me in ASAP. (He went back to look at the August 2024 scan and confirmed neither one was on that scan.). I had two of these blooms before. Once in 2017 or 2018, and the other was when the back and lungs went nutzso before the back surgery/drug trial. The quick overview of what is coming - 5 days of treatment and both tumors will be treated at the same time. Now a bit more details.

Next week for the CT visit/measurements, then about another week to plan it. The rib is touching my heart, so the treatment will to make sure it does not go through the tumor into my heart. (Erring on the side of falling short of the back of the tumor.)

The hip bone/,muscle tumor has caused a lot of damage - including more structural damage in the area. This is why I have started feeling weakness on my right side, the difficulty getting up and down and into bed, etc. This tumor is touching my bowels, which is why I started feeling/seeing the swelling on the right lower quadrant of my abdomen a few weeks ago.

There is a 1-2% chance of damage to my bowels being damaged. Additionally, and more importantly, the doctor said that any bowel damage will not show up until years down the road. I laughed, said I my first surgery was 10 years ago next Monday, and I will cross that bridge if I get to it. LOL

The bone on the right side is weakened and the proton therapy may weaken the bone more. But the good news is when bones are treated, the dead tumor eventually starts being absorbed/removed by the body. This process usually starts within a month or so of the treatment. When this happens, the bone also gets "remineralized" and back to being normal. In other words it will be stronger than what it is now.

Due to the extent of the pain in my hip/back, I am starting steroids. At first is was going to be 2mg twice a day. But when I got into more details on the pain, he said just go straight to 4mg twice a day.

He also said I should get on a systemic chemo again ASAP, and I should be good to go for that about 2 weeks after my last proton therapy. Overall he is confident he can treat these and stop the pain. There may be some short term effects where the pain increases and/or the bowels may be short-term problematic (as compared to permanent problematic chances or 1-2%) but both will improve as swelling goes down. I may also get a rash on the chest treatment side due to positioning to avoid the heart.

So guessing the pain will be improved within a month or so from the treatment, though the steroids should take care of the pain for the short-term will happen sooner.

Dead Inside ..I’m Not Dead Yet….

 

 I have been dealing with cancer for 10 years.  I am perfectly aware of my condition.  In fact I have been putting together things for the last couple of weeks for some things I need to file, and have been down memory lane. The surgeries, the biopsies, the pain, the various drug combinations and the damage caused to my body.  

But during this time I have been doing a ton of things.  Triathlon. Photography. Even saved a life as a member of the South Orangetown Ambulance Corps.

Most of my cancer is now controlled in my on-going game of whack-a-mole.   But a few tumors need the special attention due to their location.   Obviously this will not cure my of my cancer.  That ship sailed a long time ago.   It has been palliative treatment for years.  

The proton therapy will check these tumors, prevent damage to the surrounding organs, will have less side effects (I have had effects from standard radiation, which is why I had my walking ability trashed) and will let me continue my whack-a-mole.  But since I have so much cancer, as far as the insurance company is concerned, it is not worth it for me to get the treatment.   I figured that I would get at least another year or so, probably more, with these being treated since the drug trial is looking like it may keep things in check longer.  I am a fan of zombie movies and Monty Python.  The Zombies are often locked into rooms with a big warning “Dead Inside.”  Somehow I am now on the wrong side of the door.  Next I will see Eric Idle pushing a cart.  Eric, I’m not dead yet.

So to see this in writing is still a bit of a gut-punch, despite the fact that I know I will be able to get the treatment I need despite the insurance company.  But I have started coughing up some blood.  Would have been nice to have been done with this at this point and could get back to the business of doing everything I can to stay alive and continuing enjoying life despite having cancer.  

Could Have Made it :)

   Back in 2000 I was close to getting my black belt in karate.  One of the requirements was being able to do a  a sub 10 minute mile.  That was something I knew I could never do.  I never was a good runner.   I did not finish my training due to other circumstances.

Fast forward ahead to October 13, 2017.  I opened up a CT scan report which showed the cancer had spread and was basically incurable.  Happy birthday.

So when one last scan happened in December, 2017 showing no mistake I started triathlon training.

By August, 2018 it was clear I would have to get radiation then go back on chemo due to the tumors in my lungs an spine.

 Did a half-marathon, followed by a 70.3 then had radiation.  I was really happy when they did those treatments.  The pain in my spine was pretty bad.  This was the beginning of October.  The pain started to subside and on October 13, 2018, one year after my cancer was pretty clear to be incurable, 2 years after having part of my left lung removed and a few days after radiation to tumors in my back and spine, I ran a 5K to celebrate my birthday.  

Lo and behold, I did a 10:57 pace on my Garmin (my official time was hire.) Looking back, I guess I could have done a 10 minute mile back in 2000.  The things your learn…

The Irony of Insurance Companies

 

 Finally received the letter from the insurance company as to why my claim was denied.  I am not sure if their opinion changed after a peer-to-peer review.  But I think it may not.  Regardless of that outcome, the fact that this is happening is just ..ummm… messed up.  

I am fortunate that I am being treated at Memorial Sloan Kettering, which is one of the leading cancer hospitals in the U.S. My radiation oncologist has been treating me for 6 years.  He does not administer proton therapy. He said it is the best thing for me due to the location of the tumors and the potential damage which would be caused by other forms of radiation treatment.

Here is an excerpt from https://www.gmlawyers.com/proton-beam-therapy-insurance-denial/ 

"Proton beam therapy has become increasingly popular as a form of cancer treatment, but because it costs more than standard radiation, insurance companies routinely refuse to cover it. Often, insurance companies have policies in place classifying proton beam therapy as experimental or investigational. Based on these policies, insurers issue blanket denials of coverage requests without considering the patient’s request and assessing their individual case. Courts have found this type of conduct to be an example of insurance bad faith and have criticized this insurance tactic in the harshest terms.....

Proton beam therapy differs from standard radiation therapy in that it fires protons at the cancer cells rather than x-rays. The advantage of the proton beam is that it is more precise and can be more selectively targeted only at the cancer cells, leaving nearby healthy tissue largely undisturbed. The proton beam can also be customized to fit the size, shape and depth of the tumor in the body, further increasing its precision."

Knock me over with a feather about what they say there.

Google "proton therapy denial" and you can find many examples.  Including this one - https://www.propublica.org/article/blue-cross-proton-therapy-cancer-lawyer-denial

It is now over three weeks since it was decided it was time to proceed with proton therapy.  As recommended by my radiation oncologist.  And which was thought to be the right course of action by other doctors at MSK.  

Yet I was denied. Though I have been beaten down a ton by what I have been through the last decade, there are others who are older/in worse shape.  Throw this BS at them as they try to keep on living.  Right, because cancer is not enough.

A bit of irony in this all - treatment was denied for September 11 through December.  I have cancer because of 9/11.

Got To Love This

  

Insurance company called an hour before they closed for the weekend.  They left message that I got it 2 minutes before they closed.  They are denying my treatment.  They did not specify what treatment, but since the only one that I am waiting on is for proton therapy,

I am assuming it is for that.  Most of my cancer is stable, but a few tumors in my lungs are close to major structures.  They are located too close to the esophagus and heart to use radiation - there is a good chance it would damage both.

The tumors are growing rather quickly.  Guess the doctor who sits behind the desk there, denying claims, is putting their medical degree to good use.  Instead of doing things like being a real doctor.  

For ten years I have been doing everything I can to stay alive.   In the past the insurance games have not impacted me to this extent - the delays were not quite as critical.  I will now have to wait all weekend

For 10 years I’ve  been doing everything I can to stay alive.   In the past the delays were not quite as critical.  I will now have to wait all weekend to find out what is going on.  Gotta to love this.