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. 

Been Too Long Again

It has been awhile, yet again, since I updated things.  Unfortunately there is not much to add on walking side of things.  I am able to walk, but it is unclear if I will progress further.  

A new brace, which I started wearing about a month ago, is supposed to help trigger the muscles that have atrophied and engage them more.  I am able to walk with it for short distances at a time, and I do feel some pain/stress/activation in my hips and other areas that have been weakened.  But I do not feel that much more sure footed.

I do manage to go 1-1/2 miles a day, with many days going between 2.5 to 4 miles when I am taking photographs.  I am tired and walking slower by the end of those days, but I am moving.  I really wish I could be training more and working on my cardio.  I keep on telling myself I will get on the treadmill and hold the rails tightly.  I cannot use a bike trainer - there is no way I can raise my leg to get over the seat - but I may get one that has the low bar.  I still want to get into a pool, even just to walk.  I am often too tired to do many things, but I think it has been improving some the last 6 weeks.  Occasionally I still have the crashes.  I slept from about 8PM Friday until 10AM today, Sunday, with occasionally getting up for some water or food.  I had gone almost 24 hours without eating.  

I had a CT scan last week and results were overall very good.  The cancer is controlled and not growing.  Except for the few big ones in my lungs.  

It is now time for at least two, possibly more, to have proton therapy.  Proton therapy is more precise and causes less damage than usual radiation treatment.  Due to the proximity of the tumors to my heart, trachea and esophagus, it will be used.  Otherwise there is a good chance I would have damage .  

Proton therapy is coming along quickly, meaning that there should be much more availability and lowering costs in the not so distant future.  It will be a great day when it can be used routinely for tumors in sensitive areas or where surgery is the only option now. If it was used instead of the surgery and radiation on my spine, I probably would be in better shape and my leg may not have been trashed like it was.  It makes me smile to know that the mets in my spine will be easier to treat for others.  What I have seen in the last 10 years has been remarkable.

I am fortunate that based on the particulars of my case and overall health, despite the walking issues, proton therapy is on the table.  

So I will have 10-15 treatments on consecutive days, with weekends off.  The side effects, such as nausea, are also less than radiation. ''

I have not really been looking at my CT scans much since I started immunotherapy, though I had the discs.  I popped one in today after seeing it on the computer when I met with my radiation oncologist last week.   The effect of the immunotherapy was clear.  Where there was once white fuzz of the cancer tumors, there is now black, the remnants of the tumors that.  I have posted a couple of images showing this.  I also have posted a movie to go through my lungs and see the multiple black spots.  It really is awesome.  Unfortunately though, it needs to be 100%, especially when the tumors are in a bad spot.  So far my radiation treatments have been effective in knocking down the cancer.  I knew this was coming down the pike and have been waiting.  I figure the main troublemakers will be put in there place, then back to getting to walk and run.  

#iTRI4aCURE

Marching On - To Sleep or Not To Sleep

  I was feeling tired today.  One of those tireds where I just wanted to sleep.  If I woke up, throw on the TV, then fall back asleep.  I figured I had a long couple of days.  We drove back and forth to Cleveland for a funeral for a family member.  We headed out Sunday.  Monday turned into a sleep day.  We went to be maybe midnight on Sunday, and other than a brief interruption for a phone call at around 9:00AM I slept until 1:30PM.

So sleeping late the day after returning seemed okay.  I did have plans - pick up my steroids, get some packages from UPS with cameras that had been serviced and then shoot some baseball and lacrosse.  But it seemed to be too much.   Then I realized that my fentanyl patch was overdue to be changed.  Recently I have determined that if I am late in changing the patch that I can feel tired.  A day or two it may not make a difference.  But starting at day 3, it usually will.  So I forced myself to change the patch, then rested a bit.  Then I started watching TV a bit more.  To actually watch the shows.  Often the shows just occupy me briefly until I fall asleep.  I choose shows that I have watched multiple times or which do not require real attention.  The sound also helps with my tinnitus.  But then I was semi-watching a bit more.  And I pushed to watch.  10 minutes without dozing.  15 minutes.  I was coming out of the tired, or so I hoped.

I got up and put on my jeans.  Then I got one of the strange hits.  Where I get chills.  Then overheated.  Then just a general weird feeling coupled with nausea.  I knew what that meant.  Pain was happening.  It just is my body often exhibits pain in off ways.  I did a quick mental check and realized I did not take any pills for awhile.  I am constantly trying to avoid the pills.  At one point I had them down to once a day or once every other day.  Then the myocitios hit, which was the precursor to me eventually me having the difficulty in standing or walking.  So pills went up then.

But since I started the steroids to address the nerve damage, the pain seemed to decrease and I started reducing the pain pills.  But the last couple of weeks the pain kicked back up.  Could be from dropping the steroids.  Could be from me trying to walk more.  Could just be one of those flare ups from cancer and all the things going on in my spine and otherwise.

So back to being a bit more mindful of the pain flares.  And today was a hidden one.   Took the pills, and they worked.  Things evened out.  The nausea stopped.  The amped up feeling - kind of having your body electrified or something - came down.

Then I was not tired.  I started feeling okay.  I started feeling like I could do what I needed to do.  Getting in and out of the car, walking, picking things up are all more challenging.  Things that require more mindfulness.  More mindfulness to break through the pain and awkwardness of doing it.  But it turned positive and I was back to smiling.  Got into the car.  It turned over without a jump.  (My battery often dies with gaps in starting it based on my health.).  Went and got my camera things.   But that time I was smiling and talkative to the UPS personal.  They are people I know pretty well through the years and we often talk.  So it is something that make me happy.  Getting out and seeing people.

Picked up my steroids, then headed over to shoot baseball and lacrosse.  I was happy.  Back doing what I love and getting steps in.  I may not yet be running or biking.  But I am moving.  Moving around to find angles to get good photos.  Moving around and seeing my step counter/distance move up.  Even if I am not exercising and not pushing things, when I am moving I know I am not giving up.  It may not be a 70.3, but getting past a mile is always something.  In my mind if I am moving a mile, my mind is “I am not capitulating to this.”

Made over 1.5 miles and got a ton of photos.  Then tomorrow I will be going to my main baseball place.  The place that marks time and that I keep on going despite what is going on.  

Sure, got some more issues to deal with, but I am ready to keep on going on.

Sophie’s Choice, Cancer Style

  

Back in late December/early January I noticed that I was having trouble getting onto my bike trainer.  It became more and more difficult to swing my left leg over the saddle.

Since I am not the most flexible person, I figured it was general tightness.  So I made sure to focus on my stretching more after my biking and running sessions.  I thought I was gaining flexibility based on my range of motion.  

But getting onto the bike became more difficult.  Then  started having difficulty doing other things.  I get an using my hands to lift my leg into bed or into the car.  Then dressing became more difficult.

Then, on January 12, I fell down almost a full flight of stairs.  I thought it was my fault with my hands being full and thinking I went to grab something.  I wasn't sure, though I remember it was my left leg that went.  The fall was scary.  Time really does slow down.  I waited to hear the sound of my neck breaking.    I got banged up a bit, but no real damage.  X-Rays showed all my hardware was in place in my back and that there were no broken bones.

I fell a couple of more times.  Each time I thought it was my fault.  One time was getting up rapidly to shut off something.  Another a misstep going into the garage to put out recycling. A MRI in early February indicated that I had a few muscles tears and a tendon tear - all relatively minor.  It also indicated that I had a CAM/femur issue which would be causing a nerve impingement.  Finally an answer, though I was still scheduled for an EMG March 8.  

But I felt increasing unsteadiness.  I purchased a hip brace and a knee brace the end of February to keep things aligned.  I though the falling was happening when my legs moved laterally, as compared to forward and back.  I then added a walker by the beginning of March.  If I kept focused on stopping my left leg from moving laterally, I was okay.  I also determined that when taking the stairs that I needed to go up with my right leg leading and go down with my left leg leading.  This was determined by a couple of falls when I did it in reverse.  But at least I figured it out.

March 8 came.  I was told right away that I had Lumbar Plexopathy - basically an injury to the nerves in the lumbar and/or sacral plexus.  Later on that day I received a call where the other shoe dropped.  I had demyelinating neuropathy. In both my left leg and right leg, though the right leg was minor.  It is an autoimmune disease.  From the NIH:

"Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder that involves progressive weakness and reduced senses in the arms and legs. It is caused by damage to the fat-based protective covering on nerves called the myelin sheath. "

Apparently it is a relatively rare condition.  Around 34,000 people in the United States have it. How do I know that?  The answer is simple - as I was writing this a commercial came on that I had not noticed before.  Looked like one of those commercials that the drug companies put out that tease issues before really pitching their drugs. I have seen this happen a few times for various conditions that I did not know were conditions.  This one was for CIDP.  Go figure.

The kicker in all of this?  CIDP is a potential side effect of immunotherapy treatments.  Yup.  The drug trial that looks to be saving my life has started crippling me.

I have started on steroids and it seems the numbness in my left leg is starting to improve. And I think I am getting a bit more movement back.  It can take a few more weeks to see.

The steroids can interfere a bit with my immunotherapy treatment, but it is a balance.  I was only scheduled for two more treatments and the steroids should not adversely affect what progress I have had made to date.  There is also a couple of other options which look to be highly effective. The problem is that it could undermine the immunotherapy I have to date.  Hello cancer.

So as of now I will ride things out with the steroids and see how they work.  I am remaining optimistic, but it is a bit difficult from time-to-time.  But talking about Sophie's Choice.

Good News For CRC Awareness Month

 Spoke with my new Oncologist.  Really good things.

First are the standard treatments available.  I ran through FOLFOX, FOLFORI and Lonsurf.  The last one left was Stivarga, but that is know for being nasty.  The one that my other doctor said may not be worth using because whatever extension of life would be really bad.  Of course I would probably try it if I had no other options.  I could try FOLFOX again for a few rounds before neuropathy.  But the best news is that FDA approved a new drug, Fruquintinib, two months ago.  It looks to be more effective than Stivarga, with less side effects.

Second are the results being reported for CRC patients who have gotten immunotherapy. These results are new since immunotherapy has not been used much in CRC until recently.  80% of patients who had stable cancer from immunotherapy continued to have stable cancer two years after stopping the immunotherapy.  (It could last longer, but at this time there is enough date for two years to be looked at it seems.)

Third, my cancer changed again.  A new mutation, which I did not have two years ago when my last sequencing was done two years ago, has developed.  This mutation is one that is an indicator of a cancer that will response to immunotherapy, which may be why I did so well on this trial.  There are also trials out there that are targeted to this mutation that are successful.  In connection with this, I will probably have a biopsy in the near future to get more details on my cancer and mutations since new tissue samples will provide more details as to this mutation and whether my cancer is now MSI, among other things.  This biopsy will be on one of two large tumors in my lungs, which are the two which are starting to grow a bit.

This biopsy will be done before any action is taken to address the lung tumors, whenever that becomes necessary since proton therapy would destroy them and we could not get samples.

I will be having a chest the end of March.  This will be to get a sense of how the two large lung tumors are growing.

So the plan is to get the biopsy to get a detailed idea of the current state of my cancer.  We will then monitor my cancer before doing the next thing.  In all likelihood the next thing will be to "nuke" the two main lung tumors if they get too big, then monitor the rest of the cancer.  There seems to be an 80% chance that the rest of the cancer will be stable for at least two years.  (My CEA dropped yesterday for the first time in a few months 😀) If and when the cancer starts growing, then I have at least one new drug and a few trials to jump into.  

Though it is not always easy, this is why I keep on pushing as much as I can.  I just got to have my leg heal up so I can start exercising again.  The EMG and MRI coming up should provide more answers on that.

#iTRI4aCURE

Very Delayed Race Report, 2023 Recap, 2024 Start

  Race Report Atlantic City September 10, 2023

A bit delayed race report (and pre-race stuff too.)

—————————-

 Back in 2018, the 2018 Atlantic City 70.3  looked to be my only chance to attempt to do a solo 70.3. My cancer was inoperable and incurable.  My back had been hurting, and a spine tumor was growing.  I was not sure what was going to happen going forward.   Delmo Sports made sure I would have a spot in the race whoever I made my decision and my health status.  I completed the race, solo, under the time limit.  It is something I never dreamed I could do.  There is a special place in my heart for Delmo and the race because of this.

I did the AC 70.3 for a second time in 2021.  It was a relay and I did the bike leg. 

Rumors started circulating in the early part of 2023 that the 2023 AC 70.3 was going to be the last.  When this was confirmed, I signed up to participate one last time.    I was not, however, in any shape to do it as a solo race.   So I registered a relay team.  I was doing the run portion.

My training leading up to the race was not optimal for a few reasons, including an unforeseen 2 week trip the end of July.   But a few longer runs when I came back helped me feel more confident that I could go 13.1 miles on race day.

Using a run/walk combination seemed to be the best approach.   I was fine with being slow.  I was not fine with somehow winding up with a DNF, which could happen if I overexerted or hurt myself during the race.   I settled on 2:1 ratio a few days before the race.  Based on a conservative estimate of what my teammates would do on the swim and bike, I figured I would have at least four hours to do the 1/2 Marathon.  So about 18 minute miles.  I do understand how slow that is - basically a crawl for most people.  

I did a 13:46 pace in my first 1/2 marathon.   A week later I had a 14:32 pace in the 2018 AC 70.3 after swimming 1.2 miles and biking 56(ish) miles.  But that was a back surgery, 10 radiation treatments, 40 rounds of chemo and three drug trials ago. 18 minute miles can present a challenge on some days.  On the other hand, I did a 7 mile outdoor run and a 9 mile treadmill run leading up to this year’s race at a 16:30 to 17:00 pace without feeling like I was straining.

The weather reports indicated there was going to be rain.  I kept an eye on the reports for two weeks.   I tried to figure out what to bring.  I am not a fan of carrying a lot of things, but it seemed that compression sleeves, a foldable lightweight waterproof jacket and foldable brimmed hat would cover the weather.  

So I decided on doing that, together with a Amphipod Belt and water bottle.  Clif Blocs in the belt/back pockets.  I am really bad about drinking/eating on runs.  I will often go the entire run without any food or water.  I resolved to eat and drink this time.  I figured that during the one minute walk sections would be perfect times for that.  

The Thursday and Friday before the race turned out to be rough days for me.  Friday was the worst.  The tired hit.  The bad tired.  The tired that messes with your mind.  The tired that was telling me it was a stupid idea to do the race.    When I have the tired bouts, I keep on reminding myself that I know that they stop and I should just rest.    Each treatment has brought them around in various degrees.  I seems to have gotten worse.  It is not clear whether it is from the immunotherapy or the sheer number of treatments.  It seemed to be getting a bit better Friday evening, and when I woke up Saturday the tired had broken.  

We got to AC Saturday afternoon and picked up the race package, then went over to the Ironman store.  Unfortunately all the “name” shirts were sold out.   This was disappointing.  I like to have a name shirt or sweatshirt from my races.  More so for this race, since it was the last AC 70.3  So far, no luck.  No name shirts ever appeared on the on-line store.

We checked into the hotel, then went to Carmine’s for a family style dinner. There was a discussion about what time I should get to the race.  I wanted to be there first thing to see Lori off on the swim and then get a chance to see Yale off on the bicycle.   Since I was running, however, my relay mates convinced me it would be a better idea for me to sleep in.  I realized they were right.  I checked the weather report when I got back to the hotel room.  The chance of rain continued to increase, with possible thunderstorms.   

The weather forecast on Sunday, race day, continued to look pretty bad.  My wife and I  headed over to Bader Field.  As we parked the car, the skies starting opening up.  Crazy rain.  I was going to go out to transition anyway, but my wife convinced me to stay in the car.  The rain did not let up.   It was coming down in buckets.  I had the race tracker on my phone and watched as Yale made it through the course.  He had to be drenched.  When it looked like he was close to finishing, the rain somehow let up.  I made my way to transition.  It was humid and warm.  I was not sure what to carry.  My rain jacket would be like a sauna, but I put it into my jersey pocket anyway.

Lori did an incredible job on the swim.  Shortly before Yale came back into transition, I checked his time.  He was finishing up an incredible time on the bike.  I would have enough time to do 18 minute miles, which I figured would be my worst case scenario to ensure I would not bonk out before the end of the race. Yale pulled into transition, put the chip on my ankle and I was off.  

The start through Bader Field seemed to take forever in 2018.  This time it did not seem as bad.  Of course I was only running, so that helped.  I was feeling pretty good and I stuck to my 2:1 run timing as best as I could.  Sometimes I missed the alert on my watch, so it was not perfect.  I was also doing pretty well on my pace.  I was under a 15:30 pace 3 miles in.  

I also stopped at the first two stations to get water/Gatorade and take my Blocs.  I slowed down because I never have gotten the hang of drinking when running.  More water would wind up on my jersey than in my mouth.  I also filled a silicone ziploc style bag with ice, and put it in front of my jersey to help cool me down.   A light slip on the wet boards reminded me to be careful, so I slowed down a bit. 

I got to the third aid station, which is the second reverse U portion of the course. A short section from the boardwalk, out a block or so, then back onto the boardwalk.  A volunteer asked if I wanted ice.  I said yes and they put down the back of my jersey, instead of the pouch I was reaching for.  It was cold, but then it felt pretty good.

The good feeling did not last very long.  When I got back on the boardwalk, my back started burning.  At first it was mild, then continued to the point it was really hurting.  I had to get the ice out.  The area where my back surgery was done has nerves that deal with both pain and cold.  My rehabilitation doctor had mentioned to me that this would sometimes mean I would feel cold when I was actually feeling pain.  And vice versa.  So I started trying to get rid of the ice without slowing down.  I would pull my jersey off my back, shake a bit like a duck, and some cubes would come out.  It had to be quite the sight.   But I was still hurting.  It was also slowing me down because things started slipping out.  The strap on my running belt started getting twisted and caught up.   Things then started falling out of my pockets.  I realized I had to fully stop to fix things properly.  By this point I was fairly certain I would not be able to get under 16 minutes per mile, though I thought I could still make 16:30

I continued on the run and got to the pier.  This was another section that seemed long in 2018.  It seemed a lot shorter this year.   I even didn’t look too unhappy in the photo near the end of the pier on the way out.  I then came back to the boardwalk and continued on.   Someone called out, “Go Drew”.  I had posted about my experience with cancer and triathlons on the AC Facebook group, and said feel free to keep me company or say hi.  It happened a few more times during the race.  

I continued to the beach portion of the run.  Fortunately it was not very long.  The next major section was coming up - a section of shops that were basically a U set on its side.   This part was hard.  It does not look that long or that it has a lot of elevation, but it is a bit of a false flat.   It was deceiving and somehow a bit tough.  

Though it had rained off and on during the run, it was not too bad.  But when I finished the shop section, the rain started and did not stop.  A steady rain.  Occasionally it would become very heavy.      This part of the run also is the toughest.  It should be easy.  It is flat.  The turnaround is under two miles from once you exit the shop.  But it seems like time stops.  I spoke to many runners the three times I did the race - they often thought the same thing.  The first mile marker seemed a bit long, but then getting to the turnaround takes forever.  

I kept on pushing on.  Pretty wet.  Started to get cold.  Pain setting out in my legs.  In addition to the general pain/neuropathy on the front of my legs, my hips started locking.  It is something that came up after the back surgery.  It made it difficult to go on.  But I knew I had the time cushion to finish and did not want a DNF.  The boardwalk got slicker and I slipped a bit, but no falls.  Some more people called out my name.  I finally made the turnaround and headed back south.  As I neared the shops U again, more people calling out my name and I heard Yale clearly. There was no way I was not going to finish in time, despite the cold and pain.

I got to the chute leading to the finish line and kept on moving.  I tried my best to kick up the speed for the ending of the race.  I always try to finish strong by going as fast as I can for the last bit, but I just did not have it.  Crossed the finish line and was a bit shot.  Someone said hello to me, “You are the cancer guy!  We have been following you.”  I nodded yes, tried to introduce myself, but I was not hitting on all cylinders.  Usually I would have a conversation, and I felt I came across as a bit clipped/short.  

The rain stopped, the sun started coming out, and I started getting cold.  Which turned quickly into really cold.  Usually I am not one to take off my jersey off in public.  Between my port and the scars from the surgery, plus looking like a tall chicken wing from all my weight loss, it is not the prettiest thing to see.  But I didn’t care.  I was chilled to the bone and needed to get out of the wet clothes.  So took off my top and got into my hoodie.  Took awhile, but I finally started warming up.

 I finally got a chance to check my time.  17:08 pace.  All things considered, not too bad.  I played it very carefully in terms of making sure I did not slip, push myself too hard where I could injure myself and made sure I stayed hydrated.  I could have made it under 17 minute pace for sure.   Took a month off from training to see family during the holidays and travel.  Starting building back a bit in December, and will be working more on running in January and February, with some biking.   I have a 5K in February.  Last one I did was at a 15:11 pace.  Going to aim for sub 14 this time as I continue to heal from the back surgery.

2023 training is in the books.  800 miles of biking.  300 miles of running.  Not much swimming or biking.  Looking to beat those numbers in 2024.  Started 2024 with a 4 mile run.   

#iTRI4aCure