The Patient Who Came to Dinner

I don't know if you ever saw the movie "The Man Who Came to Dinner," but it's about a dinner guest who injures himself and then just stays and stays and stays and drives the hosts nuts.

I kind of feel like that guy at the moment, the guy who's overstayed his welcome. There's nothing much for the nurses to do for me anymore....I'm done with all the therapy and I'm not on any medication...but until the drainage from my lungs is reduced they can't let me go home.

I'm making progress every day and getting stronger. I've walked the halls many times over. But the voice and breathing are still challenged because the lung hasn't inflated yet and I still have those two drainage tubes. So even though the bad news is everybody is ready for me to go home, the good news is that I should be ready to go home by this weekend.

Update from our hero *

* transcribed by his sidekick

Today I graduated from Occupational Therapy, tomorrow I'll probably graduate from Physical Therapy. I don't think I get a diploma, but I should - I'm star of the class.

Two tubes were pulled on Sunday and today they cut off the oxygen, so I'm only two tubes away from freedom. Still, I can walk around the place on my own now as I'm free of some of the excess baggage.

Still short of breath and my voice gives out, but I'm feeling a little better every day. Itty-bitty, teeny-tiny better.

(Hold on while he coughs. Ok, he's back.)

The doctor is pleased and optimistic about the progress. We haven't set up next steps yet as far as chemo and I don't have a go-home date, but hopefully soon.

(Poor guy's tired so we're going to let him stop now, but he's recovering well and thanks all of you for your concern over the past few months. More later.)

3 Simple Rules

Joe's directive upon entering the hospital:

1. Don't let anyone see him bald,

2. Make sure no one lays him flat 'cause it would suffocate him and

3. Make sure his goods are covered.

So far so good, unless any of you sneeked in and took a peek while he was laying flat and suffocating.

If so, keep the secret. I don't want to get in trouble.

We're not going to wear out our welcome by filling you in on the oh-so-exciting details of recovery. But Joe's doing well, feeling fine and walking the halls.

*Actor Simulation

Don't you wish you were here!

A weight off his chest...

...as in a whole freakin' pound!

Boing!!!!!!!!

Imagine how big that sucker must have been before all that radiation and chemotherapy.

The doctor came in this afternoon to fill Joe in a bit and explain the surgery. Normally I'm squeamish, but it was interesting the way he described how Joe's kind of tumor works. He said it's like spilled glue, it sort of spreads and drips and fills any available crevice. And then he described how he cut it out.

Alright, squeamish again.

But he was really happy that it worked so well and again said that when he met Joe in July he really didn't think that he was looking at a future happy conversation with a patient in recovery. He told us of a patient he just saw today, a young guy who first went to a doctor in August with Joe's same symptoms, but never was given a chest x-ray because, as we've said in this blog before, this diagnosis is so rare that it doesn't even come to mind to look for it.

He didn't tell us what's going to happen to this guy as far as prognosis and treatment, but at least the doctor has Joe as an example that there is hope even when things look impossible.

(Sidebar: Joe's file is VERY thick...I think that those notes are going to be pretty handy when the doctors write up how they did this treatment and the results they received. They seemed to have made every right choice so far knock on wood).

Joe started rehab treatments today including breathing exercises that involve two very different devices to get his lungs back in to shape. We didn't realize it, but they had needed to deflate one of his lungs during surgery so that they could peel the tumor off of it. But they were happy about how well he felt, how little pain he was in and how he could, very slowly, get himself out of bed and into a chair even with yesterday's major surgery.

One last thing to note, but NOT to worry about. If you recall (or if we told you) there was a huge chance that the tumor had impacted the nerves to Joe's vocal chords. There was a chance that his vocal chords would be paralyzed, maybe even permanently. Now, as it turns out, there is a little paralyzation in the middle of one of his vocal chords which will lead to gruffness in his voice as the day wears on. But only for the next couple of months.

The speech therapists that came in today and did their tests (which included stringing a camera up and through Joe's nose so they could observe his vocal chords in action...yikes, we BOTH closed our eyes) were pleased as well that Joe was in such good shape. BUT, if you call him, especially later in the day, his voice will sound very strained and exhausted. They said as long as he isn't "pushing" and it doesn't hurt, it's all right for him to talk. BUT you've been warned. So don't ask "what's up with your voice Brenda Vaccaro?"

Done!

It was a LOOONNNNGGGGG day for our Joe, but after 7 hours of surgery, he's out and sleeping peacefully in the ICU. The doctor came out, very tired himself and told us (us being Luis, Debbie and Tina) that he thinks he got the whole tumor, there weren't any unexpected complications and he didn't need to do any of the precautionary vein work that he'd told me and Joe about earlier (so Joe won't be needing turtlenecks afterall).

I'll explain that comment in a later post.

It's a huge relief and I know Joe REALLY appreciates how kind and concerned everyone has been. He really feels loved and has told me that time and again about everything you guys are doing, saying and emailing. And tomorrow, according to the doctor, he will feel VERY uncomfortable, so I'll remind him of all your well wishes and love and hope it helps him feel better. Poor little guy.

I'll keep you all posted.

One anecdote and then I'm off to bed. After he'd filled us in and answered our questions, the doctor asked to be reminded what Joe did for a living and I said Joe's a Project Manager. Debbie added that that meant Joe is very organized and I said, as an example, that Joe had written a stack of cards that I wasn't to look at, but needed to send out in the event that things didn't work out so "well" for him.

And the doctor said, "I wonder what he wrote in MY card?"

:)  More later! What a relief!!

Pandora's Box

So, we have surgery scheduled for 2pm on 2/22 - Speaking with the surgeon it could be a very short surgery, as in 'What a mess!  There is nothing I can do with this!' in which case they sew me back up, send me home and we look at long term chemo solutions or the like to contain the tumor; or it might be nice and easy and maybe a little bit longer where he just reaches in and picks up the dead ugly thing and we are finally rid of it; or it can be a long and drawn out surgery where he is really challenged to remove, repair and replace things like the aorta and veins.  

Whatever the outcome, we could not be better prepared physically, mentally, spiritually or medically to deal with it.  Exciting stuff . . .



It's a date

I KNOW I can, I KNOW I can!

We have secured a date for surgery - 2pm on 2/22.

All pre-op tests looked good enough to make it a go for Wednesday. All aboard...the journey continues.

10, 9, 8, 7...

All of my scheduled pre-op tests are now behind me:

...I got to breathe in a tube in a glass enclosed closet;
...have what felt like a nail pounded into my wrist to connect an IV;
...AND down a root beer float while nuclear drugs simulated my running on a treadmill - a great way to exercise!

Now we wait for the test results and hopefully a scheduled date for surgery.

Happy Valentine's Day to all! Next stop: the Operating Room.

The flurry and the furry

This was a busy week. PHEW...I'm exhausted. Catching my breath is more of a hobby than a normal course of the day lately, figuratively and literally.

First, my PET scan came back showing that the tumor remains localized without any evidence of the cancer spreading anywhere else in my body.

With that behind me we proceeded to complete some pulmonary stress and cardio tests.  My EKG came back abnormal, ugghh, but I suppose with all the radiation, chemo and low blood counts I should not be surprised.

I have been assured that I should not worry and that the very reason this cardiologist is used by Dr. A is that she is very thorough and wants to make sure there are no surprises or issues we need to deal with pre-op. I have two more cardio tests on Monday the 13th and then after evaluation of all of the tests we finally should be able to set a date for surgery.

I had a little bit of rejuvenation this week, which Thompson found quite amusing. While I still do not have a single hair on my head, the hereditary Vargo rhinoceros hair (Grandma's side of the family actually) has returned to its prominent spot on the top of my nose - it felt good to see its return and even better to be able to pluck it!

The gory details*

*Don't worry, there's no gore below, just the details of the meeting with the surgeon.

Modern medicine is amazing - I have a CAT scan in one building and moments later my doctor is able to review the results in another building.


Based on navigating from one building to another and his being with another patient this all took a little longer than a "moment," but he really only needed a few minutes to look at the scan, know exactly what he was looking for and come out to the lobby to tease us with joining him in one of the consultation rooms. 


My first question (after seeing "50/50," a movie I should not have seen) was "has the tunor responded to the chemo treatments?" But, unlike the movie (thank god), the doctor came back with a very positive response. So positive in fact that he is no longer sure we will need to remove and replace the aorta, no longer sure we will be replacing or repairing veins and arteries and is now hopeful that the clot that was evidenced in the prior scan might no longer be there.


That was all pretty phenomenal news to me, Thom and Debbie, three people in the room who had a deep hidden fear we might be receiving parting gifts.


Funny aside: When I said to the doctor that I know the operation will be difficult and "I know you won't know what you're doing until after you open me up and have a look," he immediately interjected, "I'll know what I'm doing" and gave me a look. So, the update to you guys is that we don't know the extent of the surgery NOW, but the doctor is having a 3D model made up from this CAT scan and that will give him and us a better idea of what he will find.


While this all sounds really good we will not really know what surgery will require until he has knife in hand, and of course I'll be anesthetized so I'll have to fill you all in later.


The doctor himself was very pleased with the progress that has been made. He reminded us of the condition I was in when he first met me last July and my head was the size of a pumpkin, my neck like a linebacker's and my upper body extremely swollen. He reached out with his hand and said 'Congratulations - I really did not think I would ever be able to say those words to you."


At any rate, the news he gave could not have been better. I will have a PET Scan next week that will be looking to see if the cancer has spread to any other parts of my body (highly unlikely based on recent tests and the 40 hours of chemo I have completed), but he wants to make sure.


And then we set a date for surgery - a very ugly and serious surgery, but the best shot we have to put this all behind us - Yay!


The following day I had the breakdown of all breakdowns. I was alone in the house in a hot shower, following a call from my very pleased Oncologist who had seen the CAT scan, but not even spoken with the surgeon yet.


Apparently that conversation and his enthusiasm about our journey were the tipping point: There were tears, there was moaning and I am pretty sure there were deep primal screams and the pounding of fists - Seven months worth.


FYI: I am a guy who used to hyper-ventilate just visiting someone in the hospital and now for the past seven months I have been needle pricked and poked and tubed and drained and IV'd and Emergency Roomed and hospitalized and radiated and chemo therapied within an inch of my life.


With surgery in the offing I am now in a quasi-conscience-like state awakening from some nightmare. While I wouldn't have thought I was the kind of guy who could pull myself together and get through this, I do know that I gained my strength because I was never alone in this - not ever, not for a moment and for that I thank you.

And now we exhale

Joe:

Had my CAT scan today and afterwards met with the surgeon - He is normally pretty dour and a straight shooter, but today he was almost giddy - surgery is on, following a PET Scan next week and then scheduling of the procedure - feeling good - details to follow!

T:

An incredible day, fantastic, happy result...which is weird to say when a risky, major surgery is the next step. But we were all so scared that he wouldn't get that step. So scary for Joe and so hard to try to act normal for all of us, I know. Debbie and I went for the scan and the consultation and for a minute when Joe was out of the room we both looked at each other and acknowledged how scared we were. Her palms were sweaty, my hands were tingling and burning like they were on fire.

Will fill you in on the rest later. I think we both just want to collapse. This isn't about me, I know, but I was SO worried that this was all happening on my birthday. It felt like it was all some mean cosmic joke.

Best birthday EVER!!!!