The Stockings were hung,,,,

...from the IV pole with care, in hopes that red blood cells soon would be there.  Ahh...more Christmas fun!

I had my 5th 8 hour chemotherapy on Tuesday, December 13, which included a bonus round 2 unit blood transfusion. The blood transfusion was a good thing - 4 hours long, but as the chemo deters the growth of new cells it provided a red blood cell boost to carry more oxygen through my system. 

I now have more energy, less light headedness and shortness of breath - it was a good thing. 

One more session of chemo likely the week of January 9 to be followed by a CAT scan and then a determination of what we can do for next steps. Feeling pretty good and getting into the holiday spirit.

Best wishes to all of you!

The 12 Days of Chemo

Things have been quiet of late, but that is only due to the recurring cycle of chemotherapy and rush of the holiday season. Now, not that we aren't taking this seriously, but I thought I might as well share the unusual joys of the season with the family and friends I love - and yes, that's me under the tree!

Sung to the tune of 12 Days of Christmas:

On the first day of Chemo my doctor gave to me:

A drain clogged with falling out hair.

On the second day of Chemo my doctor gave to me:

Anti-nausea pills,

And a drain clogged with falling out hair.

On the third day of...OK, OK, you get the idea, let's cut to the chase and sing with gusto...

On the twelfth day of Chemo my doctor gave to me:
Memory confusion,
3 days of hiccups,
8 hours of I.V.'s,
Skin itching wildly,
Nose running madly,
Breath short and shallow,
Vision soft and fuzzy,

FREE SEATS ON BART!!

Always feeling cold,
No eyebrows,
Anti-nausea pills,
And a drain clogged with falling out hair!

Over the River and through the Woods

I had my most recent chemotherapy last Wednesday, November 16, just in time for the Thanksgiving Holiday!

Woopee!

I am now getting used to the ebbs and flows of low energy, foggy states of mind and hiccups (hiccups are the new nausea - a much better alternative!). Hair follicles are dropping like flies. We have trimmed it about as much as you can, so it is now time to bring out the razor and call it a day.

The assortment of hats is working well, making a limited fashion statement, but keeping my head warm! Next chemo is December 13 - Have a Happy Thanksgiving!

Photo Simulation: Don't try this at home!

And now a word from our Surgeon

This journey continues to be one of ups and downs and now it is time to share one of the "not so ups." I met with the surgeon last Wednesday morning...he is a straight shooter and I always appreciate his candor and directness. For the most part he confirmed a lot of what I/we had been suspecting, but there were a few new twists, too, and it has taken me a little bit of time to process it all.

Surgery still remains a potential path we might be able to follow. The good news is, if there is surgery and I come out of it OK, after a period of time with no recurrence I would be considered 'cured'. That would be good news and the best possible outcome. We will not be able to look at surgery as a possible path until after all of the chemotherapy is behind me.

Now for the complications with surgery. 

I confirmed that this is a Stage 4 tumor and while it has been reduced in size it is not as small as we had thought. It still remains at about 5 inches by 3 inches and possibly as much as 2 inches deep in some areas. So, it is a pretty big tumor.

I suspected (and also confirmed) that the tumor remains attached to the Superior Vena Cava artery. This is one of the three arteries that make up the aorta that leads to and from the heart. Additionally, I apparently have a clot in the SVC. This clot seems to be pretty well anchored in the SVC so there does not appear to be much concern with it detaching and causing a stroke or whatever else run-away clots might do.

The net of all of this is, if they want to surgically remove the tumor they will have to remove and replace the aorta. There could also be complications with vocal chords, breathing and swallowing and the possibility of recurring swelling - pretty major stuff. My surgeon has done this before with 100% survival rate, but it is a heavy duty, big time surgery with risks.

The other path would by-pass surgery all together and I would live with whatever of the tumor is left. This would require analysis and possible treatment every three to twelve weeks for the rest of my life - Unfortunately, the shelf life for survival with this path is also greatly reduced.

So, that is where we currently are. In the meantime I am feeling pretty good and living as normal a life with all of you as I can. We continue with the chemotherapy and hope that the continued treatment further reduces the size and impact of this tumor.

I truly appreciate that I am not making this journey alone. Thank you all for the continued thoughts and prayers.

XO

Hat Box

Hats have been coming in to warm the scalp of our Joe. Some of 'em complete with hair.

A man of many looks. 

On the Road Again

Home for the Holidays!

My blood work from Halloween came back looking good - The white blood cell count is low, but no shot or follow-up appointment is necessary. We also scheduled the next chemotherapy for Wednesday, November 16 with 2 more to go after that. 

FYI: Surgery may no longer be on the table, making this a chronic...yet manageable...condition I can live with. I will know more about that when I meet with the surgeon on the 9th. Slow progress, but there does seem to be light at the end of the tunnel! 

Further good news: I am able to travel by car to Carmel for the holidays!

Measure for Measure

I spoke with the doctor in radiation today who confirmed the latest CT Scan as showing the tumor reduced by about 50% from the original scan - He estimates it to be reduced to about 3 inches long and 1 inch across - still sounds ugly, but definite progress to our end game!

Hat Trick

Sans Hat: Cold, Bald and raging against the wind

Avec Chapeau: Warm, Content and Stylish

 Joe's going from Midoxinil-averted Male Pattern Baldness to just plain bald in the very near future and asked me to trawl eBay for him:

"I will likely need hats the next 3-4 months - hat size is Medium (7 1/8 - 7 1/4) - not caps as I have a slew of those - happy hunting!"

I thought it might make a project worth sharing. Any of you have hats in his size collecting dust in your closets?

CT Scan

I had another CT scan this morning to measure improvement since the last radiation treatment. Nothing dramatic, but the Doctor was pleased and reports a continuing reduction in the size of the tumor.

Yay!!!   ? 

Hurry up and Waiting Room

Running as fast as I can

Friday's chemo session came and went - The Keystone Cops on-than-off-than-on-again morning finally eased into Nurse Janet tending me for seven hours. She administered seven drugs, providing a little something for everything.

My comfortable little room allowed me to set up my laptop and work through the afternoon. Thompson was able to come up and join me for the last hour and a half. He was able to partake in a sandwich break and a tour of the facility.

Prior to my first session I had been prepped to expect a large room with a lot of folks hooked up to receive their treatments. What I found instead, happily, was a group of well spaced rooms, some with fountains and bamboo gardens outside their windows, all totally private with snug lounge chairs, televisions and the semblance of a private nurse. 

Bryan Hemming Cancer Care Center at the California Pacific Medical Center

Not a get-in-line-for-the-experience adventure, but a respectful and comfortable way to work through chemotherapy.

And he's off...

Chemo on again - in taxi en route.

Red Tape

Well, I just returned from a nice visit with friends and find that I received a voice mail from the hospital that my long awaited chemo treatment scheduled for 9am on Friday, October 21 was never authorized by my insurance carrier. Apparently the doctor's office never requested having the treatment authorized. Proceeding without authorization would be on my dime so I was strongly advised to cancel and reschedule. I feel like I am all dressed up with no where to go - I have my anti-nausea meds and my boost the white blood cell count shot ready for me, and am all primed to get this show on the road, but have been stopped cold in my tracks - Bummer - 

Stay tuned!

Strength in Numbers

My happy little white blood cells are making new friends

Good news!

My blood work came back today with strong white blood cell counts - Next up is chemo on the 21st with a follow-up shot to keep the count up on the 24th!

The Amazing Healing Box

I received the most special gift today...not only the most special gift that I have ever received in my life, but the most special gift I could ever imagine receiving. It took me several moments to comprehend what the box was, why I received it and what the contents inside were meant to convey, and once I did, I had to stop and hand the box to Thompson just to collect myself.

It's beautiful. I was, and remain, overwhelmed by emotion by what so many of you have all worked together to send me. If these were even just blank slips of paper you had all crafted I would cherish them, but the few slips that I've been able to read without tearing up tell me that these messages will each fill my heart or make me laugh and give me strength to get me through this adventure/challenge/course/period in my life.

Once I can stop the flow of tears I will read and absorb them all.

I am truly blessed and treasure every one of you. Thank you, thank you, thank you.

Are you Purell pure?

Every day brings something new (sometimes twice, as I thought I'd done enough blog updating earlier) . . .

After updating this morning I got a call from my Oncologist. I figured it was a follow-up to a message he left yesterday, but no - something new. My blood work indicated a low white blood cell count and I needed to come into the office right away for a Neopogen shot (which would hopefully boost my system up to normal levels). The last time I had a low white blood cell count I ended up with an infection and a 7 day hospital stay.

Needless to say I was on my way within minutes - I am on alert this weekend for any sign of a fever.

Hopefully all will be well with follow-up blood work scheduled for next Tuesday. If I am going to be seeing any of you soon, good health and clean hands are very important!

 

Reality Check

I met with my Oncologist on Wednesday - He tried to sugar coat the results of the radiation with a whoop that they were behind us, but the reality is they stopped radiation treatment as it was beginning to damage healthy heart and lung tissue. Our remaining assault against the tumor is now a more aggressive chemo regimen.

I knew this was coming, but it is still hard to get "excited" about. There will be 4 more chemo sessions spread three weeks apart and starting the week of October 17. They will be more aggressive with a new drug added to the mix - The drug that will make one nauseous, lose their hair and have a very low white blood cell count - 

Did I mention I am not excited yet? 

But, I will get my arms around this and will be excited - This is the regimen that will knock this tumor out as much as possible so that we can determine our next steps.

R and R

Now that Joe's treats aren't being irradiated anymore, he and I caught up with friends over the weekend...Joe is actually beginning to look and feel like his old self again, I'm very happy to report (though he describes himself as running on 5 cylinders instead of 8).


On Friday, Rosa and Clark came up with Desma to meet us for dinner and over the weekend we heard from a variety of Joe's friends via email and telephone.


(Incidentally, those of you who have not been introduced to the cuteness of Elvis, the son of our friends Ann and Pete...voila...

...Elvis created and sent the cancer crab that's worked miracles on Joe.) Ann, Pete and Elvis sent greetings and the above picture from a day out in NYC.


On Wednesday Joe meets with his oncologist to see about the course of treatment now that radiation has stopped. We'll let you know when we know. We really don't know if it's a "good" thing or not that the radiation treatments were stopped. The tumor is so close to vital organs that one of the reasons they decided to stop was so as not to damage heart tissue, etc. Of course, the fact that the tumor reacted so well to radiation IS a good thing, so we'll see what's next on Wednesday.


By the way, Rosa asked if we were sugar-coating things on this blog to keep his friends from worrying. I guess to a small degree we probably ARE just out of our natural personalities, but the episode that prompted the question was when every day we'd blog that Joe was supposed to get out of the hospital "tomorrow" and tomorrow turned into a week.


That really WAS the info we were getting from the doctors...if we'd known he was going to be there a whole week we would have started whining WAY earlier. And made him drink more water so they could have unhooked the IV earlier.

Progress

I received good news about the CAT Scan I had last Thursday!

I met with the Chief of Radiology today and my last radiation treatment will be on Tuesday, September 27th - two and a half weeks (12 treatments) earlier than the last plan. It appears that the very ugly tumor has been reduced by an additional 10-15% since the last scan (around 40% overall).

He said the radiation I've already had will continue doing its thing for the next 3-4 weeks so we should see an even greater reduction (hopefully) and they don't want to hurt the good heart and lung tissues with continued radiation if I don't need it. (This might cause a realignment of my chemo treatments as without concurrent radiation treatments that might opt to be a little more aggressive with the chemo, but that is for another doctor's consideration on another day.)

So the good news is that as of the 27th I am currently done with radiation treatments!

News from the North

Sheila and I unfurling the Mish flag made the front page of the Wawatay News in 2008
click to read

I received an email from my friend Sheila in Canada after I'd updated her on all the news from this summer. Thom and I met Sheila when we were down in Antarctica for the marathon and we've stayed in touch over the years.  She is an incredible woman, devoted wife and Mother and constantly achieving the goals she sets out for herself - she, like Thompson, will soon be joining the "Seven Continents Club" by having the unique distinction of running a marathon on every continent - She added so much on our voyage to Antarctica -   

Oh My Sweet.., What good news and terrible news. I wish I could give you a big hug and hold your hand. Congrats on your 30th. What a remarkable story of love and commitment.  You have with Thom, what most people will never experience.

You have in me, a friend who will never give up hope. You are, an incredible person who has so much strength and love to give, you make the rest of use look like under achievers.!  Joe if anyone can do this..., you can!  Tell that cancer to fuck off, no room at the Inn! We will not allow this cancer to have a place in your life, or our lives! For all of us that care for you, please get well. I will fly down to see you, walk down to see you, I will do what ever you want to help you get better. I promise you I will. I won't give you my first born cause I still like him.., but all else is on the table, except for the husband cause I still like him too! But everything else is on the table - really

My thoughts are with you and Thom..., please keep me in the loop

Love and miss you

Your favourite Scot/Canadian

I'm lucky and blessed to have so many great friends from all over the world.  Thank you all for the cards, emails, texts, offers of help and phone calls - It really does take a village!

Dry as a bone

Oncologist just called me with results of today's x-rays - NO FLUID BUILD-UP on my chest!


YAY!

My Chariot Awaits

Life in the fast lane

Thursday, September 22, pushes me well over the half way point for the radiation treatments. Hopefully it’s also a day that includes a new CAT scan (to see how this tumor is continuing to respond to the chemo and radiation) and an x-ray to see if there is any new liquid on my chest that we need to deal with.

Fingers crossed on both counts! 

In the meantime strength and energy returning - also enjoying beautiful weather in San Francisco on my walks to and from the bus for radiation treatments!

Live from the drip

8:54 a.m.
Joe:
I have my own private room for this today and they found a vein! Reading lots of magazines and the new Jacqueline Kennedy book - Later - and thanks for being there!

9:00 a.m.
Doug:
Bon chance ... avec Jacqueline. Queue me up for the book.

9:33 a.m.
Tina:
And with your chemical cocktail sounds like a good PTO!!

10:15 a.m.
Thompson
I'll live blog it so keep me updated.

10:16 a.m.
Joe:
K- currently in a private room getting fluids and chemo and reading Jacqueline Kennedy - historic conversations on life with John F. Kennedy.

Joe has been cordially invited to spend the day with the President and Mrs. Kennedy.
The Kennedys and a slew of doctors and nurses with needles, chemicals and radiation equipment.

10:35 a.m.
Joe:
Drinking cranberry and apple juices - Bev and Lisa are looking for ways to fatten me up.

2:40 p.m.
Debbie:
Sounds like a good chemo drip day!!! XOXO from D.C.!

2:45 p.m
Thompson:
Still there?

2:46 p.m.
Joe:
Still here - last hour then radiation.

2:54 p.m.
Thompson:
Hope Jackie O is still keeping you entertained.

3:26 p.m.
Joe:
She did her best - I have a seat on the bus so home soon. What a day for my little body -

4:01 p.m.
Thompson:
Let me know when you're home...safe, sound and aglow.

4:14 p.m.
Joe:
Now

4:15 p.m.
Thompson:
Yay!


UPDATE:

Joe:
Today was the best day since getting out of the hospital a week ago - temperature good, energy getting back to what it was and all of that putting me in the right frame of mind for my second 6 hour session of chemo followed by the daily radiation treatment - Last session of chemo was as an in-patient and happened while I slept so I was not sure what to expect - today was private room with juices and lunch and all painless with lots of time for catching up on magazines and my book - Trying to stuff myself to put on some weight and looking forward to a good night's sleep and whatever (besides Thompson!) tomorrow brings!

And now a word from the star of our show

Much like a hostage poses with a newspaper to show the world a photo is new and legit,
yesterday we adorned Joe's shoulder with Elvis' cancer crab...his guardian angel.

Now that Joe is home and feeling better, he wanted to update you all with his most recent adventures:
The week that should not have been. 
Thursday, September 1, was one of my best days - good energy, easy breathing and enough energy to work from home. I walked 8 blocks to the bus to get to my radiation treatment, visited with Tina that afternoon, called Herb and Alan in NYC, had a pizza dinner with Sally and then a late call to Aunt Jane in Colorado - I felt great! 
Eight hours later I had a temperature of 102.4, fever and chills and felt just awful - I am rarely sick and had no idea what to do about it. Luckily I had an early visit from my home nurse for my scheduled draining - one look at me and she was on the phone with the Oncologist who wanted me into ER STAT (I think that is the phrase). The bad news as you now know was that visit ended up becoming 8 days in the hospital. They needed to ID and fight the infection and get my white blood cell count from .5 (should be a minimum of 2.0) back up to 12.0. After way too many attempts to draw blood and locate a vein for an IV the doctor also wanted to check the catheter in my chest and found it to be infected so he just yanked the sucker out - very strange feeling.
The GOOD news is that I got to visit with Tina, Doug and Debbie and Thompson was able to come up for a number of days to help get me back to good health. AND there is no current plan to replace the catheter, instead monitoring fluid levels and performing a Thoracentesis as necessary which thankfully eliminates the need for home nurse visits - so I am currently plumbing, bandage and dressing free.
Now I'm back home getting my land legs and back to daily radiation with chemo next Friday. Just taking it easy this weekend, reminding myself that I am not currently the old me, but a new me with radiation and chemo in my system.

Free at last

Finally!!

Joe got his "get out of jail" card last night and Debbie picked him up, brought him home and even got him a Chipotle burrito. He got a good night's sleep and went off for radiation earlier today. I got a text from him that they've come up with a new radiation strategy. I'll let y'all know what that means when I know. I'm going back up tomorrow.

Joe, the human pincushion

Well, IF they can ever find a vein to draw blood from, Joe should be able to get his dang lung drained and then go home. Poor guy has been poked with needles over and over, but because of the swelling in his arms and hands they can't locate a vein. And actually they don't need the blood for blood's sake, they just need to check coagulation Joe says. He also says ya'd think they'd notice how quickly the blood coagulates from all the missed-vein holes, but....

Still, he's not complaining, just ready to go home. He got good news about last week's scan, the tumor is down about a third, which is GREAT. It's still big, but at least we know that it's reacting to the chemo and radiation.

More later.

Still slumming it in Pacific Heights

Joe's in good spirits and on the mend, but he's still at California Pacific Medical Center. Who knew when we used to go to the Fillmore for fun that it could get so boring so quickly.


Still, he's out of TICU which means he's not hooked up to all those machines and they're not drilling for blood every hour. And he really can't say enough good things about the doctors and nurses....he's treated REALLY well.


Hopefully he'll get out later today or tomorrow.

Update re: hospital

Joe's feeling good, his white cells are up to safe levels, the fever is gone and they're treating the infection. Probably not going to get to go home today, but fingers crossed for tomorrow. He's also hoping they don't put the chest catheter back in and if he still needs draining, just let him get the needle version once or twice a week. He has to be at the hospital for radiation anyway.

He has NYT crosswords and Harry Potter (he wants to reread them all for some reason) so he should be good for now (bored, but good).

More later.

4:30 p.m.

He's looking very good, quite handsome actually. Especially now that they let him take off the oxygen nose tube. Those things don't really make the most of your features.

Debbie, Tina and Doug came by for a visit...as usual, laughter ensued. He might not have been able to make the Labor Day BBQ we planned, but at least there was a party in Pacific Heights. Without Joe's usual satorial sense...man, those hospital gowns are ugly.

A little set-back

First off, Joe's feeling fine and the news isn't drastic, but he did have to go back into the hospital today. He woke up not feeling well and with a fever and when his visiting nurse came to change his bandages, etc. she recommended that he go to the hospital, which he did.

They gave him antibiotics and his fever went down, but they decided to keep him overnight. When his surgeon came in to check on him he told us that these kind of things happen with chemo 'cause the white blood cells drop.

He mentioned to Joe that he was looking good (the doctor hadn't seen Joe without facial swelling). He said, "I can even see wrinkles now."

Thanks doc.

The interns (who all look about 12) were excited about getting to see the draining (Joe was supposed to get that this morning but went to the hospital before that could happen). Besides, they wanted to drain his lung and check for infection in the fluid. Much to their disappoint and the doctor's surprise, when the he took the bandage off Joe's chest catheter they could immediately tell that it was the catheter incision that was infected.

So wham, bam he pulled the tube out. Anyway, Joe's actually feeling more comfortable without the catheter and hopes they don't put another back in...then he won't have to have the visiting nurse.

He's fed and on a drip and hopefully he'll be able to come home on Saturday or Sunday. The blessing in disguise about all this is that he was feeling really good so he was going to go down to my house today to get away for the long weekend. And if all this had happened down there, his insurance wouldn't have covered all the expenses at my local hospital. So we've learned a lesson about all this. When they told him they didn't want him to travel, this is why.

More later.

A Note to Elvis and his parents

THANK YOU!

I got a wonderful package in the mail last night - I love, love, love the cancer eating crab -it is so life like, colorful and HUNGRY!  - the card from Elvis was right on and I am trying to stay within that circle of health - and candy, 2 boxes of my very own chocolate covered Macadamia nut candy - what a bonus -

 

I was ear to ear smiles, chocolate covered face with a heart full of love to all of you - thank you! 

 

xoxo Joe, on the mend!

"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

Bermuda...the innocence continues

In the previous post, I asked Keri to do a eye-witness report from the wedding as she was, afterall, one of the witnesses to that crime against nature (oops, sorry, thought I was a Republican there for a minute).

Many years ago when I lived in New York, I went to Bermuda on a $199 get-away excursion fare and have lorded my good luck over Joe for decades now...I'd seen one tiny little section of the world that he hadn't seen.

Since it was illegal to get married where we live and we were going to be on the East Coast anyway, Bermuda seemed like the BEST place for the post-wedding vacation (after 30 years "honeymoon" is as ridiculous to say after the wedding as "boyfriend" was before).

We found a GREAT!!! little house called Bird's Nest that we booked and called home for the stay.

It was the PERFECT place for us, as it turned out, though it was further away from Hamilton then I originally thought.

In the scheme of normal life this wouldn't matter. But unbeknownst to us, we were a couple of weeks away from getting the world's WORST wedding present (we NEVER should have registered at California Pacific Medical Center, what were we thinking?), so when I made Joe walk from the house to Hamilton to "experience" Bermuda on foot, I didn't know at the time that I was sorta killing him. (He was a good sport despite his inability to breathe and I regret my "suck it up old man" attitude in light of subsequent events.)

Hamilton was great and worth the walk...

...but I didn't make him walk there again. Or anywhere. He was a good sport, but did I mention he was cranky?

The beauty of the transportation pass that we bought was that it was good for buses AND ferries, so we were able to see just about all of Bermuda from land and sea for a nominal fee. AND feel like Bermudians (without the oddly colored shorts).

Lucky, lucky memory.

http://www.bermudagetaway.com/indexBN.html

Before the Deluge

21st Century weddings are truly where it's at.

Keri, here. I' m Thompson's sister and now sister-in-law to Joe, who I have considered a brother for the better portion of my life.

Sometime earlier in the year, Thom told me that he and Joe were going to "tie the knot" on their 30-year relationship.  If California would overturn their then-current ban on marriage, then they would do it there; otherwise it was to be held in Connecticut, what my partner, Justin, and I have coined as "The Las Vegas for Gays."

Justin and I live only about 150 miles east of Norwalk, CT, where our best men would be taking their vows, so we rented a car and headed west. With all the class and candor of our stylish hosts, we found ourselves in one of the most charming New England towns on a beautiful, sunny, early June day.

Norwalk, Connecticut

Norwalk is situated near the New York border on an estuary that leaches into the Long Island Sound from the Norwalk River.  The landscape of an estuary is always unique as it is a combination of salt and fresh waters, usually providing large thickets of sea grass, clams, small amphibians and fish that are well-adapted to this half-saline coastline.

Estuaries form a transition zone between river environments and ocean environments and are subject to both marine influences, such as tides, waves, and the influx of saline water; and riverine influences, such as flows of fresh water and sediment. The inflow of both seawater and freshwater provide high levels of nutrients in both the water column and sediment, making estuaries among the most productive natural habitats in the world.

It was a perfect place to celebrate the union of any relationship, but certainly for Thom & Joe. Their relationship practically is an estuary. It is both fresh and salty. The creatures that inhabit such an environment are proven robust. The environment requires it.

Like the normal flow of river and the normal ebb of ocean, the two bodies meet somewhere halfway, creating its own composition. This is the encapsulating idea that shadowed our stay with Thom & Joe that early June.

On Sunday, June 5, 2011, Justin & I witnessed a commitment made by two people we love deeply. At exactly noon, as our bridegrooms exchanged vows, the church bells rang softly -- yet sternly -- behind them, as if a confirmation, emphasizing the faith and dedication required of a marriage to that of the most sacred and intimate spaces.

The occasion, though incomparably small, was truly festive. When Thom asked me if I wanted to say anything at the wedding, I replied, "to whom?" I mean, we were the only ones at the wedding, and Justin doesn't hear very well. Both Thom and Joe know how much we love and support them. If ever a girl like me could be absent of words, for some reason it was that day. It just didn't seem that words could truly express a sentiment this lovely. 

(Left to Right) Keri, Joe, Thompson and Justin

Justin & I were truly grateful to have spent those days with Thom & Joe at Norwalk; not just for the wedding itself, but for all the days before it: the feasting, the swimming, the bike rides with beer in our baskets, the sarcasm and wit that we all four banter, the warm nights and warm souls by poolside.

What fortunes we hold.

A funny thing happened on the way to Bermuda...

As several of you know, Thom and I recently spent a week in Bermuda – it was a great get-away!


What none of you know is that on the way we stopped in Connecticut for a few days and shared a beach house with Thom’s sister Keri and her boyfriend Justin – We love time with them, but they were there primarily to join us at noon on Sunday, June 5 to witness a very short and simple ceremony where Thom and I were married in not so holy matrimony – This year marks several milestones for Thom and I, the most significant of which was being together 30 years on June 5.


We had hoped for a simple 'just the two of us and a Justice of the Peace' thing in California, but the Golden State is still dithering on the marriage act, so we opted for Connecticut instead – Please do not feel left out, we wanted it short, sweet and simple, but do join in the celebration of our wedded bliss (ugh) and we can do some toasting and cake when we are in NYC in August.


Cheers! Thom and Joe