Wednesday, June 20, 2012

One more for the Road

We started this journey together almost a year ago and I thank you all for keeping tabs on me and making this hurdle more bearable. Now it's time for me to release you all in to the wild as I go forward with the day-to-day steps towards my new normal.

To keep you up to date with one last episode of "The Doctors" before we go:

We had a good day on Wednesday, meeting with the cardiologist, picking and poking to find a vein for the CT IV and meeting with the surgeon.  I'm still having issues with my breathing, swallowing, speaking and heart rate and I've been feeling lately like I'm regressing, but Dr. A. summed it up pretty well when he said, "You're not regressing. You ARE getting older."

So for all the mess - the good news is that a lot of what I thought were signs of regression really mean I am on the road to recovery!

The cardiologist says my heart went through a lot of trauma with the tumor and then the surgery, but the medication I am on should keep me in good stead and we should see good progress in 6 to 12 months.  AND the CT scan came back looking good with no concerns from the doctor.

I have had recent episodes of coughing, hacking and quite unsightly and ill timed regurgitation.  Turns out that means my vocal chords are improving, loosening up areas that have been paralyzed causing phlegm and the resultant coughing episodes.  All good! (Unless you happen to be present.). Next up: I start several weeks of pulmonary rehabilitation to help with the breathing. Who would have guessed that the recovery would be the hard part!

We now seem to be on track with recurring doctor appointments, quarterly CT scans and the pending pulmonary rehab.  This will likely be months, if not years, in the making, but we now know what to expect.

So there. Now on to the rest of our lives.

Thank you for having joined the journey and being there for me for this past year - Yikes!  What a 12 months it's been!  Now it's time to go back to just being there for each other as friends and family.  You and a wonderful team of doctors and nurses have gotten me to where I am today and it is with that love and support that I will see this through to new days of good health!

Bye for now!

With much love,
Joe (Mending)

Wednesday, June 13, 2012


I told you I'd update you today after my appointment, so even though today was a bust I thought I better write something to keep anyone from worrying.

One of the worst things about this whole experience has been the drawing of blood...or, more specifically, the sadistic torture inflicted in search of a vein. A CT specialist dug around for 10 minutes in the tiniest of veins trying to set up the IV for my CT scan.

I finally had to yell "Uncle" when the pain in the digging in the back of my hand became unbearable. (My veins have all either hardened from overuse or chemo or just gone into hiding - I am what they call a 'hard stick.')

When they brought another nurse in to do a little more digging someone from Admin came in to say one of the CT scan machines was out and we would have to reschedule. July 20 will be my next "big day" with 1) a cardiologist appointment, 2) a CT scan and 3) the rescheduled appointment with the surgeon. One guy should not be allowed to have so much fun.

It looks like I will be signing up for some physical therapy - a stationary bike sort of thing - which will be very good for me. If I'm going to be "running in place" for awhile, at least I should be getting some exercise.

Monday, June 11, 2012

The on-going cycle

I met with the Oncologist on June 5.  A net gain of 2 pounds (yay!) and a little more clarity on the pathology report following the surgery in February.

A new term was introduced - positive margins - which means that traces of cancer cells were found in the tissues used in the diagnosis of the pathology report.  The surgeon was able to remove 99+% of the tumor, but some cancer cells were left behind either trapped under healthy cells or mixed in with dead tumor cells and cells damaged by the radiation and chemo.

These margins could now be dead, might remain present, but harmless for years or they might act up and begin to grow.  We will be monitoring them around every three months with CT and occasional PET scans.

This drives the project manager in me nuts!  But, we will deal with it.  (I meet with the surgeon on Wednesday the 13th following our first post surgery CT scan and we will go from there.)

In the meantime breathing and the vocal chords continue to be issues, but I continue to get stronger and had a good week that allowed me to get around my chunk of the City with very few rest breaks!

That is good progress!