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.)

News from the homefront

First of all, it is so good to be home - Two weeks is a long time time to be hospital bound, especially when the doctors and nurses have done pretty much all they can do and you are all just waiting for your chest to stop draining. Second, thanks so much for the cards, notes, packages, food, calls, emails and texts both checking in on me and sending best wishes - they all mean a great deal to me!

The recovery progress is steady, but very slow - I know I am getting stronger as I am up and slowly about more easily and more often. Thompson has set the condo up efficiently with stations in the living room, bedroom and bathroom.  Luis set up a new wi-fi system so I can operate from anywhere in the condo and I am now able to use the microwave for meals.  I feel like a quasi-independent 99 year old!

My biggest challenges remain the shortness of breath, the stress on the vocal chords, clearing and opening up the deflated lung and diaphragm and the occasional rapid heat rate. I have some slight pain and stiffness in my right leg, but am stretching and walking that out daily. All in all, everything seems to be slowly getting better. "Recovery" does seem to make me tired, though, so sorry if I haven't been up to visits or extended phone calls.

Hopefully, this does not sound like whining, but I am just not used to the slowness of being "on the mend." I will see the doctor this week and get a measure of progress from his viewpoint.

Thanks for being there for us and we'll have another update after seeing the doctor later this week!

Here's yer hat, what's yer hurry?

Edward and Christine came up and turned Joe's bedroom into
a haberdashery. The guy's stylin' in a variety of hats to suit the mood.

I'm filling in still for Joe here, but trust me, he's getting better every day. Being home has taken an adjustment. Oddly he feels more unsteady on his feet. But I think it's more being back in what would be normal life feeling kinda abnormal.

I know he wants to be back to normal a.s.a.p and it frustrates him that he's not. But he looks great and is back to his old self at least in terms of lists. We've got the meds list, the walk list, the breathing list.

We're adding tasks to the list every day. So before you know it, he'll be back to his old self enough to post an update.

Until then, know that he's doing great and every day there's improvement . Thanks for following his progress. Next post will be from the man himself. Promise!

For Whom the Bell Tolls

With the help of our friend Kipley, Joe finally got home today. '"Finally" actually kinda sums up the trip from the stoop to the apartment too. Poor guy still forgets to take it easy and muscles through rather than stand, rest, walk, rest, etc.

But he's home and now tucked into bed ready to look for our friend Ann on tonight's episode of Smash.

But don't worry, he may not be able to yell for me yet if he needs me, but he's got "the bell."

That bell has a history. My grandfather, who was respectable at the end of his life was a hooligan in the beginning. And about 100 years ago he stole that bell from his schoolhouse in Jefferson City, Missouri.

When I was a kid in the long-ago days when kids could play outside anywhere in the neighborhood and no one cared that it was dark and we were running loose in the street, that bell was used to call us in to dinner.

Later, when my Grandmother was ill she used the bell to call for my aunt. My aunt may have started out channeling Florence Nightingale, but eventually I think she had to suppress her inner Lizzie Bordon.

But Joe's had enough with the hatchet equivalents so I've warned him. Use the bell when you need me or you might end up ringing when you walk.

Kidding. He's a GREAT patient and it's fantastic to have him home. I'm glad the bell tolls for me.