"Rare, rare...

...rare, rare, rare" - Dr Hufford and I determined that if this cancer were a doctorial candidate's thesis, based on the non-existent body of work around it - that candidate would never graduate.


Today included a visit with my oncologist, Stephen Hufford, blood work, a CAT Scan and a radiation treatment - who says I do not have a full life! Hufford shared that as this is a rare cancer there is no real road map for treatment - So we are using radiation and chemo, then evaluate and repeat if and as necessary - he also stated that if I have not had a reaction to the first wave of chemo by now ( and I have had zero reaction) I should be fine for this first wave - Yeah! no nausea or hair loss (other than nature's own plan) (2nd chemo to be scheduled for sometime in the next 2 weeks) - results of the CAT scan will hopefully be available to share with me on Friday - Radiologist shared that cancer cells are being killed by the radiation, but it takes time for them to shed and purged from the body - Today marks 1/3 completion of planned radiation treatments - time flies when you're radiated.


In the meantime planning a Labor Day weekend get-away to Carmel to visit and catch up with friends down there.

Cards and Messages

Emma and Hannah, the twin daughters of Joe's friend Ann in Phoenix, sent along "Get Well" wishes the other day and now seemed like a good time to thank the rest of you who've done the same with cards, emails and phone calls.

Joe's responding really well to treatment (hopefully all over but at least visually...he'll have another scan tomorrow). He looks like his old self again, just a little swelling that seems to jump around as opposed to the chest-and-higher swelling from before radiation.

He's been trying to eat healthy, but his reaction to bananas and protein shakes remind me what our NY friends Ann and Pete said the other day about getting their son Elvis to expand his food choices...once it's gotten ON the list of things he'll eat, "nothing gets to come OFF the list."

Just like Elvis, Joe will choke down something healthy and we try to hide the Boost in coffee. But it ain't coming off the list.

Thanks again for the good thoughts and support. You guys have been GREAT!! 

Progress

Just a quick update. As of today Joe has had 7 of his 32 scheduled radiation treatments, 1 chemotherapy drip and 4 visits from the home nurse. He's got a special wedge pillow to keep him sleeping upright, and one of the above things is making his swelling go down. He looks like himself again (YAY) and while his arms and hands are still pretty big he said his hand yesterday looked a little like it was being pulled through a bottle...sorta normal at the hand with even a vein showing, and then still kinda big.


Still it was a moment. He happily got a bit verklempt. There is visible progress.

RR Greetings from the UK

Joe forwarded a picture he took of his new bunk-mate:

Says Joe: "Ritchie Rich brought me greetings from Gina in the UK!"

A little background on that. When he was a LOT younger our friend Gina thought Joe looked like Ritchie Rich and she called him that when he'd whirl into town on an expense account. Depending on the humidity, she was kinda right:

Joe with humidity

Joe without humidity

Funny about time passing...Joe still looks like Joe to me after all these years, but of course my eyes are aging at the same speed as we are. While looking for "Ritchie Rich"ish photos of Joe, I came across one of the two of us at my first New York apartment.

What's funny about the picture is that it was taken 5 years after we met...and we both still looked impossibly young even then.

Makes for quite a jarring jolt when compared with the picture of the two old men at the wedding in Connecticut. Sheesh!

A Note from Elvis

Our friends Ann and Pete have a VERY precocious son named Elvis...he's very young but he still knows more about the Solar System than you ever will. And trust me, there IS a test after he tells you the latest Hubble discovery.


He's cute as a bug's ear and quick to google for answers when faced with something he doesn't know about. Like cancer, for which Joe got the following photo and note:

Elvis' Cancer Crab

"This is probably what you want -- a cancer removing crab.  Good thing I have one.  Cancer gets eaten and it goes down the striped singularity."

Email from Joe, 8/22/11 10:02PM ET

Thompson and I are going to get in there and help make it [this blog] a viable tool that will help provide some communication

...still a little exhausted getting back to the new normal with work and juggling home nurse appointments and radiations schedules

In the meantime doing OK and getting on with it -

Love all of you - Joe

The little things

I started radiation and chemo yesterday and after 4 hours of chemo drip (to be followed by another 1 hour drip) I saw the first sign of improvement - grasping at straws here, but it was there - a tiny little wrinkle in my right hand which has been extremely swollen for weeks and tight enough to bounce a Mack truck off of - but that is a sign of improved circulation in my Superior Vena Cava and that is a very good thing - today chemo rocks!

Diagnosis

Hey gang, 

So this is what's going on. Joe has malignant thymoma (which I'm not googling 'cause I'm on the way to the airport and don't want to worry my way home). It's supposedly rare, especially since Joe doesn't have any immune system inhibiters like HIV. Leave it to Joe to get something "special." 

One thing I DO know is that it's supposed to be very treatable. He just had another CAT scan and he begins the chemo and radiation later this afternoon. 

He says thymoma means he'll need surgery at the end of the treatments so the poor guy won't be feeling very well for awhile.

But he's glad that he's starting treatment immediately and getting on with dealing with it.

He sounds good and should be able to leave the hospital Saturday or Sunday (when he went in on Monday he had no idea he'd still be there but we both think it's good that after finding out this morning he was able to immediately start treatment 'cause he was already there.) 

More later.

A not so funny thing happened on the way to New York . . .‏

Hello dear friends -

Sorry to make this a mass email, but while Thompson will still be making the trip to New York for the gift Show and awards dinner I am not going to be able to join him this trip.

Strange how life is always full of ups and downs - Our wedding in June was certainly an up and all continues to be great with Thompson and me, but I have recently received some health news that we want to share with you. 

After a few months of not feeling quite myself I had a complete physical - The good news is I am for the most part in really good health with a strong heart and good vitals - the not so good news is that I have been diagnosed with a mass in my chest.  So far all of the doctors say it is treatable with a very good prognosis, but we are still in the process of tests and scans and they are draining me of every drop of blood I have ever had.  We hope to know what type of cancer it is by sometime next week and then it looks like we immediately jump on the treatment train.

I really am feeling okay other than some swelling and shortness of breath and the doctors feel we are on top of this and should have it behind us soon. Good wishes of course are welcomed.

Sorry I will miss everyone this trip, but I will get back there as soon as we have this under control.

All my love to you, my extended family.

Joe