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.