Well This Stinks

  Been on steroids for two days. Muscle relaxer. Pain was low today finally. So got on treadmill. Gently.

Started at 30 minute mile pace. Kept on increasing speed every few minutes. Would have kept on going, but since exercise so limited this month, lungs had to clear. About an hour fifteen in started clearing lungs. Eventually pulled the plug on the run.

Then heard from doctor. Urgh. The psoas tumor is growing. It is impacting from L2 to L4 and causing pressure on nerve.

Radiation is for sure. Now just a question of whether there will be surgery first.

But at least pain is low. Said I can try to exercise, but listen to my body. Will try to do seething. Maybe not everyday. And probably more limited.

Will see. (The dark area on the photo with the circles on the left show where tumors into spine. The right photo shows Psoas cancer)

And So It Goes

 I planned on doing updates over last week, but never got around to it.

In light of the news I received yesterday, I figured I would back fill a bit and bring thing up to date.

I thought I was coming out of the #chemotherapy effects April 13.  On Monday April 18 my back was still bad.  So I booked a session with a local acupuncturist.   She is a miracle worker and has helped many people with her needles.   I also booked a session with pain management at @memorial Sloan Kettering and contacted the doctor who radiated my spinal tumors in 2018.  He said he wanted to schedule a MRI.

Of course, as always, shortly after doing all of those things my back started feeling a bit better.  Just making appointments always seems to cure things ;)  I was also hopeful that the back and leg pain was exacerbated by the chemotherapy.

I saw the acupuncturist on the 20th and she performed her magic.  My pain was to the point of barely being noticeable for the next day or so. 

On the 21st I got on the bike trainer.  

I created an easy lower FTP workout.  I basically stayed sitting straight up for the vast majority of the ride, and did not drop down on the handlebars.  About an hour fifteen minutes in I started coughing up blood.  It is still unclear if it is from my lungs or just irritation in upper airway from coughing.  Regardless, it wasn't pretty and I went through more than my share of tissues.

Finished the ride - 2 hours Average HR 114 a bit over 18 miles. The exercise has been key in keeping my lungs clear.  Not exercising is not an option.  But I have barely worked out this month due to the back pain and #chemotherapy  I have been doing #triathlon training for over four years.  I usually do something 5-6 times a week.  Even on "bad" weeks I can usually swing 3 workouts a week.  Right now I am at 6 workouts for April and doubt I will be doing anything else this month.  

I started feeling a bit bad again about 6 hours later.  Semi-chemo blowback.  But was able to see my brother and nephews for 40 minutes.  They had come up for a visit and got here Thursday evening. 

But by Friday morning, my back was toast again.  Stuck in bed.  Could not see my brother or nephews.  Spent a lot of time on heating pad.  Took different painkillers - prescription Ibuprofen.  Then jumped into the shower for a while until the pain subsided.  I then gave my legs and back a good schmear of Bio-Freeze.  That combination seemed to work and by late Saturday pain was low enough to be able to go out to dinner.  Had a couple of marguerites, which helped with the back.  I was able to sleep with no pain for about 5 hours.  Each break in pain is always welcome.  

By Sunday the pain was back.  Picked up a cane the day before and started using it a bit.  Then Monday 25th I was off to MSK for the next infusion of the drug trial.  

I had seen the report from my April 18th scan last week.  My guess was that it would be considered slow growth/stable and I would stay in the trial, waiting for the 12-18 week mark to see if it kicked in. There was one slightly different phrase mentioned with respect to my spine, but the conclusion was that was stable. Basically I was trashed by the chemo for almost the entire three week of the last cycle.   I kept on repeating in my mind that I could deal with a couple more sessions to see if it would work.  Then thinking I could ride it out for as long as it worked - it would buy me time.

 

 

I was also hopeful that perhaps the Resist CT reading would show good news on the tumors.  Basically there are two reads during a drug trial.  There is the general one, then there is Resist reading.  Due to differences between radiologists and how they read things, or point things out, the Resist reading focuses on specific tumors that get measured each time.  If any of those were shrinking it would be great news.  The boost I needed.

It turns out I was right.  Most of the cancer was considered stable.  But then the bombshell.  Per the Resist report, the tumor in L3/L4 had increased 30% since January. And they mentioned the pain I have been describing tracks exactly what they were seeing.  So I went into negotiations.  "Are we sure it is growing?"  "I was joking about the pain, I am fine." and a few other things to see if there was an off chance there was any hope on this.

Nope.  They weren't buying it.  

They want me to get an MRI as soon as possible (I was ahead of that idea ;)), there is a chance of a compression fracture from the tumor.  I found out a couple of hours ago that the report from last week was being updated to indicate further erosion of bone in my spine from the tumor.

So this all adds up no exercise.   I am sitting here today thinking I can feel my lungs backing up, but knowing I should not exercise or strain much.  At this point I can stand/walk for a minute or two before the pain kicks in and I get back to lying down ASAP waiting for the pain to break.  There have been a couple of bouts today where my reaction stripped the paint off the walls. Pretty sure I have made up new curse words.  But once it subsides, I can sit up.  

Tomorrow I see the pain doctor to see what can be done.  Still waiting for the MRI to be scheduled.  I am guessing there will be a radiation session(s) in the near future. (It really helped a lot to bring the pain down in 2018).  I have a phone call with Yale doctor tomorrow.  He thought that there are a couple of trials coming down the road that may work.  I can also circle back to my 2015 chemotherapy for a few sessions to see if any bullets left in that gun.  I will be able to tolerate a few sessions before neuropathy kicks in.   But if it shrinks things at all, it buys time.

My most immediate concern is to get the pain under control and get clearance on exercising.  I feel a bit helpless just sitting and waiting.  Swim, bike, run helped me feel proactive in all of this.  Hoping I can get back to that ASAP.

Hello World, I am awake.

 Hello World.

How are you doing?  I have been pretty much out of touch with you for the last week or so.  Was kind of napping since last Weds.

Chemo Weight Lose Plan

The new #chemotherapy drug trial is not as much fun as all the other #chemotherapy I have had.  Because, you know, some chemo is fun.  🙄

Different pattern than the last two.  Infusion Monday, not too bad.  Tuesday was a good day (usually is).  I did .2 miles on the treadmill for a pulsox test for the drug trial I am in, and then did a mile just for fun.  I was even up to taking some photographs for a friend and met some cool people I had not met before.

Then Wednesday.  Ah yes, Wednesday.  When the steroids start wearing off.  Good times.  "Chemo belly" sets in.  It is the phrase I use to try to describe the bizarre feeling in my stomach where you know something funny is causing distress/cramping.  No bathroom runs.  Just constant discomfort.  Then I started having indigestion and reflux around Thursday.  I am one degree away from a bull shark and normally can eat anything without issue. Between coughing and the reflux, my throat was burning when I tried to eat or drink.  And my appetite took a hit.     

It is also around Weds. or Thursday when the back pain and chemo brain kicked in.  Enough pain to keep on waking me up.  And chemo brain putting me in the twilight zone of being both awake and asleep, hoping that I could fall asleep because that helps clear it.  

I woke up now and again, but mainly in bed lying down even when awake.  A couple of texts to friends.  But that was often tough.  Wordle became a major chore.  I think I did one or two to post as part of a group of friends, but even then I am not 100% sure.  

I was also constantly nauseous, popping anti nausea meds 3 times a day.  Something I have not had to do in 7 years.  Despite that, the EMT part of me kept on prodding me on.  "Eat something.  Drink something."  I did not want to lose weight or become dehydrated.  A graham cracker here or there.  A sip of water or ginger ale.  And then continue sleeping.  Watched some baseball when I was awake.

The triathlon side of my mind kicked in on Saturday.  I was a wreck.  But I know that the thing that separated me from being at death's door, or past it, at this point is the training.  I made it to the couch downstairs.  Rested.  Then forced myself to the treadmill.  My back and leg pain was bad - the drugs always exacerbate that it seems.  But I had to do something.  I was almost in tears for the first 20 minutes.  I kept on forcing myself to take another step.  I was clinging onto the handrails trying not to fall.  Then trying not to fall asleep.  It was autopilot.  Made a 5K at a pace of 22:15 per mile.  I had done a 5K race two days before the infusion at a pace almost 7 minutes per mile faster.  Not that it is fast, but I was vomiting the night before that race.  So all things considered 😉

Got off the treadmill and showered.  And crawled back to bed.  Had a glass of water. A small snack box of some cranberries, nuts and cheese.   Then a couple of hours later, praying to the porcelain god.  Most of the time I have dry heaves and queasiness.  It is rare I actually vomit.

Back into hibernation and forcing myself to eat and drink when awake.  Sunday and Monday I made no pretenses of trying to do anything.  Thought about it Tuesday and had another chemo "spell."  It is the time when I am particularly altered from chemo brain.  My body feels feverish.  If I could crawl out of my skin I would gladly do so.  It is being in a surreal part of Dante's Inferno.  I crawled into the shower, which can often help.  

At the start of the shower, I started thinking about calling 911 to get a lift to Memorial Sloan Kettering.   I was also done with the drug trial.  I just could not take it any more.  I was going to let them know immediately.  Things eased a bit, so I moved into I would take a Lyft to MSK and not an ambulance.  I got out of the shower, feeling a bit better, and went back and forth.  Finally decided to get into bed.  I was okay enough to make it through by staying in bed.

I took a full set of drugs last night - pain killer, muscle relaxer, sleeping pill - because I felt I was getting close to getting through this round.  Woke up at 4AM and 6AM.  Was still tired.  But feeling better.  Fell asleep again and woke up at 9.  Had another chemo spell.  Popped another anti-nausea pill and crawled into the shower.  Got out and then slept until noon.

I think I am out of the tough portion of the cycle.  I have been awake for 4 hours.  I am sitting up on the couch and not lying in bed.  Just feeling tired, but not the tired of the last week.   Stomach okay (added Prilosec).  Feeling hungry.  And I am getting close to getting on the treadmill.   It is so strange.  A complete change from hell to "Yup I am good to go another round,”  as if a switch was thrown.  But while in the middle of the hell it is a real fight to keep going.  And I have it pretty damn good all things considered.  

#iTri4aCure