Insurance Says No

 

Yup.  You read that right.  My doctor wanted to give me an injection today because of my cancer treatments, and my health insurance company said no.  It will work out okay, but it is an unnecessary delay on something I need.

Let me rewind a bit.  First off, I am lucky to have health insurance even with all of the issues the come up.  Second, I am lucky that I still have options and access to cancer care with all of the issues that come up.  That, however, does not mean I should not point out issues and problems that come up.

Anyway, today was the day to get blood work, a doctor's visit and then the pills to start my next round of cancer treatment.  

It takes awhile to get to Yale.  Today with traffic it was over 2 hours to get there.  Which is a pain. But I can get treatment, so ultimately I deal with it, more so because I like the doctor and the rest of the staff where I go 3 out of every 4 weeks (one week off.)  They make it worthwhile.  Every time I am concerned/bummed/ticked about the travel and other things related to Yale, when I get there and start speaking with everyone, it becomes okay. 

Once there, things started well. On prior visits I told a nurse, who often is the one drawing my bloods, about how my wife gave me Super Hero bandages when I had my chemotherapy pump disconnected on the first two types of chemo - FOLFOX and FOLFORI

Today she had a box of Super Hero band-aids.  She gets 1,000,000 stars on Yelp - not only for this, but she laughs at my jokes.  Regardless of whether they are really funny.  She deserves a raise and hazard pay.  She also mentioned that other patients are having fun with these.  A smile or fun during these things is always great.

Then we waited a bit for results to come in.  I went through the standard questions - did my medications change?  Any recent falls?  How are my bowel movements?  Of course that just causes me to make some joke.  Sorry.  Just can't help it.  One day I will grow up.  I promise.  Maybe.

I kept on checking the patient portal to see if the blood work results were posted.  Finally they were posted and I looked at them as the doctor walked in.  I am guessing he probably saw them moments before.  I looked at him and said "No chemo for me this week."  He replied, "You saw your blood work."  Yes.  I am getting good at some of these things.

My blood counts, including my White Blood Cell count and absolute neutrophil count (ANC), were really low.  Like wear a mask as a precaution low.  He also said I should get an injection of Neupogen today and over the next couple of days to increase my blood counts.   So I went back upstairs to get my injection and my port access removed.  Figured I would rest a bit, not train today, and would be well on my way to getting blood counts up and would resume treatment next week. 

Then someone came out and said there would be no injection.  Insurance said no injection.  Unreal.  They refused to pay for an injection.  Even better, they said they would approve 3 injections.  But not one today at the doctor's office.  They called and said they will try to have the injections to me by tomorrow or maybe the day after.  So in other words, these are drugs I need and they acknowledge it by approving the treatment.  But instead of me being able to get treated today, it will happen sometime in the next couple of days.  My wife will be administering the injections.

Thankfully, I am healthy (other than the cancer thing and some side effects from chemo) and I should be okay by next week even with the delay in starting the injections, whether tomorrow or the next day, but there is absolutely no reason I should not have started treatment today.  At this point it is past infuriating, it is kind of expected.  But what happened today should never be allowed to happen to any patient.  

Water

 For the first time since November, 2020, when I snuck one last tethered swim in, I was in the water. Approximately 1,200 yards.  It is an estimate of distance.  When I was in the pool, I would go between 1.6 to 1.7 yards a stroke, sometimes more.  Since I am tethered, I am using a 1.3 or 1.4 multiple. Last 7 day totals

The key things I can look at currently are my heart rate and interval time.  Did a couple of 6:30 seconds section (6:30 non-stop) and one 10 minute section non-stop.  

I went back to January and February 2020 numbers when I was still going to a fitness club.  I was putting in a lot of yards in the pool and times were strong (for me).  After a less than stellar swim, I was able to concentrate on the things I learned in a coaching session with Total Immersion.  It helped a lot.  I had dropped at least 30 seconds per 100 in late 2019.  And 2020 I was focusing on improving.  Maybe 2022 :)  

The End Of July - 2112 and Kryptonite

 So yesterday was the last day of July.  And I wanted to make sure I did something, especially since I was waylaid for the first 15 days of July.

Garmin watch said I should rest. I was not listening. I am not sure how much I trust Garmin recommendations anyway :)  

So I started running, and lungs were a bit more congested than they had been.  Legs a bit like rocks.  I still need to figure out what to do for that.  Started becoming a bit more attentive to trying to do some stretching and hydrating.  But not quite working yet. So by 15 minutes in, I was thinking, "it is okay, I did something."  But then the usual kicks in.  

"Well I am almost at mile, so might as well do a mile, especially since the false flat at the start always makes the beginning difficult."  "Made a mile, about 1/2 mile back to home, let me an easier way."  At a mile and a half "Think the coughed out all the garbage in my lungs.  Though legs still stink, maybe a bit better.  Can I hit 2 miles?"  

Around 2 mile mark my legs felt pretty good.  Looser.  Some of the best I felt in awhile. There is a section of running I had not done in quite awhile.  I knew a 5K was happening.  And was pretty sure I was going to go 5 or 6 miles.  Nothing strenuous.  Some of my favorite little sections/loops, which were all a little over a mile a way.  So I happily continued, looking forward to finishing and then going to watch a charity softball game.   The third mile was my best of the first three, was feeling good and made mental notes of how it felt in terms of how my stride distance felt, how fast I was turning over - it all felt good. Then at the 5K mark, it all just ended. 

Legs turned to rock.  Congestion.  Was like someone threw a switch.  I tried a bit more but was not happening.  Felt a bit sick, and thought I was going to be pretty sick, but after about 5 minutes it cleared up. 

Of course I was pretty far from home.  So started walking.  One of the things I have been meaning to work on is getting better at walking, since run/walk is strategy that works for many.  So there were points where I was walking at a faster pace by concentrating a bit.  Helped that AC/DC came on my playlist - Shook Me All Night Light.  The BPM was perfect.  

Then the Overture and Temples of Syrinx from 2112.  That I more listened to as I walked - I would be trying to pace the guitar parts.  Bah bum.  Bah Bah Bum. Bum (with delay).  Dah dun dun dun dun dah dun. Then those drums and everything kicking in.  Would not have been pretty ;) 

Kryptonite came on, and something worked in that.  I felt comfortable during most of the times I picked up the speed occasionally.   Going to make sure to work on this some more.

Finally made it home.  Took me a bit to feel good enough to shower then head out to the game, so I was about 1/2 hour late, though I made it by the top of the third inning.

July was not a great month for training, basically missed the first 15 days.  But still not bad.

Question of The Day

 Question of the day.  How much blood do you need to cough up before switching your training for the day from Zone 4 intervals to Zone 1 distance work?  Asking for a friend.  

🤣😕

Negotiation 101

Today - Doctors/Staff : "You don't get paid for being a human guinea pig. But you don't have to participate in the drug trial."

Me: "Uh-huh"

Doctors/Staff : "These have been shown to cause leukemia sometimes. But again you do not have to participate in these trials."

Me: "Uh-huh"

Doctors/Staff : 'And...."

Repeat 20x or so.

Me: (Despite the fact that all treatments have been used up and I have cancer every where that will kill me in the not too distant future as things stand, holds firm to my inner and external lawyer) "Fine, give me a hat and I will sign the papers. No hat, no deal."

So going to get set up for a CT scan in the next couple of weeks. Then a biopsy. I miss those. Have not had one since 2018. Then on a 21 day cycle of the trial drugs. But I am only given the pills 21 days out of each 21 day cycle...ummm...I only have to drive 80 miles/2 hours each way for things...ummm. I GOT MY HAT!!! #Winning

Playlist Update

 The Final Countdown

The End of The Road

My playlist (in my mind) got pretty small last week. On Weds I was told the chemotherapy stopped working and I was done taking the pills. No matter how much chemotherapy is not a bundle of joy, when you are told it is no longer working, it stinks. I miss feeling like ##%&#&#*#, because at least I know the cancer is at bay.

I immediately contact the trial I got into last year. We were just waiting to see how far the Lonsurf would go and ride that horse as long as possible. Still have not heard back.

I had also been remiss in not exercising for a few days. I had not seen my brother or his children in close to 20 months. The longest ever in any of their lives.

But anyway, once I stopped using the excuse (not going to happen next time, I will train, but maybe not crazy long rides or runs) and they left, I dusted myself off and got back to it. The exercise has kept my lungs clear, which is why I find myself coughing more during workouts as the cancer blocks certain things that need to be cleared out. But I do ;)

And yesterday on the run, 4.3 miles after a day of shooting baseball, Lose Yourself came up on my playlist. I put it on repeat for the last couple of miles to keep going. Awesome song and fit my mood.

"Look

If you had

One shot

Or one opportunity

To seize everything you ever wanted

In one moment

Would you capture it

Or just let it slip?"

And each time I came to the following line, I just ran harder.

"Success is my only mother*****' option, failure's not"

I do not have the luxury of failing on this.

But I am back into figuring out all the next moves.

@itri4acure @embracetheslow

PET Scan results

Had a PET Scan and MRI of the spine. Results up fast, but still need to speak with doctors. Have a good sense though what is going on.

Looks like the old tumor that was radiated is not active/growing. So that means probably no radiation to help with pain on that area. It is manageable. Sometime within an hour of waking up I find myself on a heating pad for a bit. Then sometime during the day I will get some pain that lasts a couple of minutes. But no prolonged outbreak of pain. Trying to see if positional changes can help, more so because it seems sometimes exercising does hurt, where it did not before.
Dealing with allergies, so I hope, but there is always the nagging thought it is something more.

The largest tumor in my lungs is 6.4 cm x 5.4 cm, up a bit in one direction (from 5.8 to 6.4 in two months, .1 cm down in the other direction, 5.5 cm to 5.4, but that could be within margin of error). For giggles I made a 6.4 cm x 5.4 image in Photoshop. But that is somewhat difficult to relate to. So I took a photo of some coins. The width of two quarters and a nickel are right about 6.4 cm. The height is short (4.8 cm). But it gives an idea.

I guess that is partly the reason, together with chemo, that I am getting slower on biking and running, though yesterday I tried to run as hard as I could for about 1/10 of a mile. Was slight false flat downhill. Made 46 seconds at a moving pace of 7:58.

But otherwise for running in general, I am having problems going under 16 minute miles for any length of time. Going to keep on trying bringing more speed work in to see if it helps. I know there is some slowing down from year to year, but I am hoping to get back close to 2018 speed. I had only been training for about 6 months (9 months total) when I did AC 70.3.

Off to bike shortly.