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)

Bloodless

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.

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!

Sitting by the dock of the bay...

...watching the tide roll away. Not wasting time, though. Just TAKING time.

Sorry for the lack of updates, but it has been pretty much same old, same old for me lately:

Recovery: All the thrills of watching paint dry...but longer

We met with the oncologist on Tuesday, May 1. (I hadn't seen him since December and my last chemotherapy was in January...my how time flies).  

The very good news is that he does not see any need for any more chemo right now or maybe ever.

He said my surgeon felt he got all of the tumor in surgery in February (which we knew from meeting with him) and the pathology report did not evidence any trace of cancer. Of course, now that I'm mobile I'll start meeting with the oncologist on a regular basis (monthly at this point) and he will review his recommendation to hold off on additional chemo with the 'Tumor' Board' at the hospital.

BUT he was pretty firm that they'd bombarded me with about as much chemo as one could take in a lifetime, so with no apparent reason to do so now:...

...he isn't going to schedule any new chemo treatments.  Yay!

That was a major relief. I'm beginning to bond with my new, straighter hair.

Next up is an appointment with the surgeon on the 9th of May to check improvement with speaking and breathing and the monthly follow-up with the oncologist in June. 

In the meantime I was prescribed an appetite stimulant to help me put on some weight and I will continue to work on my breathing and try to strengthen those paralyzed vocal chords (which do have their moments both good and bad).

Enjoy Spring, wherever you are!! 

Expanding the story

I met with the doctor last Wednesday...no narrative-changing news, but I probably should have posted a note a little earlier for those of you still following the story.

He was disappointed that the return of the diaphragm and shortness of breath have not progressed, but he WAS pleased that I am gaining strength.

Weight loss is a concern - chemo treatments will be delayed until I put on some weight.  After years of dieting and exercise, it's an odd switch to be concentrating on beefing up. In the meantime I will be meeting with the oncologist shortly to see what the next steps for chemo treatment will include.

Also had a very enjoyable visit this weekend with my Mom and sister (Rhoda and Rhonda) who visited here in San Francisco.  It was long over due and good for all of us -

Trying to get on track with the new 'normal.'  Since this is a daily slog, I'll keep the posting to a minimum. Don't see much "news" in the amount of protein shakes I'm trying to keep down.

Baby Steps

The past several weeks have been all about scars healing, bones meshing and connecting and overall recovery.  I am very surprised that the incision, which was closed with what looked like railroad ties (I swear they used 1/2 inch thick staples to close me up, and a LOT of them) is healing into a "not so bad" straight line scar.

Additionally, the chest bones seem to be healing well and right on target time-wise.  There is also progress on the recovery steps - it is almost embarrassing that something as simple as a 30 minute non-stop walk can be a major accomplishment, but there you have it.

My primary challenges remain shortness of breath, speaking and diaphragm issues which all wear me out.  Turns out vocal chords seem to be closely wrapped up with speaking, swallowing, breathing and coughing, which, because of the temporary partial paralysis of one of my chords, seems to explain the problems I'm having with "speaking, swallowing, breathing and coughing."  The good news is I continue to get stronger so I'm up and about more easily and often.  My vocal chords do kick in long enough for me to recognize my voice for several minutes every day, but I still sound like a soft spoken Froggy most of the time.

Other developments: I am nurturing facial hair and some fuzz on the top of my head. Progress!

Over the last 10 days or so we spent some time in Carmel and a weekend in Sausalito to try and give me a change of pace and opportunities to force me to get out and about and extend those walks.  Glad to say it worked!

Next visit with the doctor is on April 11 when I will hopefully get some direction on future chemo, recovery and maintenance targets.

Just Do It

We met with my doctor this morning. The appointment had been put off as he had come down with pneumonia last week. Ironic. Life's funny that way.

It was all pretty good news for me today - the x-ray showed that I am healing well, the deflated lung is nearly back to normal and my scar and chest bones are also healing nicely. The pathology report looked good with most everything being negative and a few items being sort of indeterminable, but of little concern (as they seemed to be part of dead tumor cells.) Additionally, there has been no build up of fluid in the chest area.

So far, so good.

He cut the meds I have been taking down to vitamins, the heart-rate stabilizing medication (for a couple more weeks) and sleeping pills (as needed). All good.

Short term prognosis: a few more weeks of healing and gaining strength followed by some chemo-therapy. My diaphragm has not started working yet, which, it turns out, is one of the main causes of the shortness of breath. It might take up to 6 months to kick back in so that's not a thrill, but it is what it is.

Long-term prognosis is five years of monitoring with CAT and PET scans. This type of tumor has a 50% recurrence rate so they will be keeping an eye on that. Any recurrence is usually very localized and treatable.

My next challenge will be to kick-up the activity level in spite of the breathing issues. A lunch out today was an exhausting first step in that direction and there are visions of lots of walks in the neighborhood in my future!

(Turns out in the recovery and medication paperwork, Page 2...which I didn't read until today...mentioned standing every 30 minutes so as not to develop clotting issues. Oops.)