THERE’S A MAN IN MY ROOM!!

And it’s so good to have him in here!!
It’s amazing that he’s here!
It’s amazing that he’s anywhere!

Wonder of wonder…what an unbelivable day! David is wiped out emotionally as well as physically. It’s a great wiped out.

Last nite, he talked with Heather, (awesome nurse) for 3 hours going over everything that happened over the past month and he cried...

Today, he got dressed in regular clothes and he cried... he packed up his computer and cried... he stood outside his hospital door looking in at an empty room and he cried.

Debbie (The Boss) touched his heart with a gift of a "Life Is Good" t-shirt with a guy and his kayak on the front and on the back the whole team from the hospital signed the shirt... and of course he sobbed, (we all did at this point).

Tomorrow we lay low and rest. Thursday they will check all his blood work and numbers and if everything comes back good then on Friday he’ll get his chest line out and we’ll head home on Monday!!!!! Yes, THIS MONDAY 2/5! 3 WEEKS EARLIER THAN EXPECTED!! I told everyone at the hospital that I feel like I’m going to wake up in my bed at home and see all my family and friends around me and I’m going to say, “and you were there, and you, and you!” It feels just like that. UNREAL!

For the next 3-4 months we have to be very careful. Anyone that comes to our home has to be sprayed with Lysol prior to coming down our street then as you enter our home you will need to shower and sanitize your body then put on a mask, goggles & gloves, walk into the plastic bubble and roll into our house. We have pages of instructions to follow and lots of new rules to learn.
There will be a bill board on RT 9 for your convenience.

Exercise and fresh air is a must so you may see us walking the streets very soon.

I sign off tonight with full heart.

~ Robbi

In loving memory of Beautiful Rose ~

Sometimes you have bonds with people that you’ve known for years, and sometimes someone “pops” into your life and you immediately connect to their soul. I was blessed to meet an angel a couple of weeks ago. We made each other smile during some pretty rough days. We touched each other in a way that I can’t express in words but I felt her touch my heart. How lucky her family & friends are to have known this angel. Learn from her beauty because it’s there right now.

Thank you Rose for touching my life. You made my ride a little less bumpy, I hope I did the same for you.

Love always,
Robbi

DAY 36 - 012907 - RIDING RODEO ON A PINBALL!

YYYYYYYYYYYYYYYYYYEEEEEEEEEEEEEEEEEEEEEEEEOOOOOOOOOOOOOOOOO!

I am being discharged from MGH, Tuesday, January 30, 2007

I know ya'll have no idea how I got from There - to - Here... It's all moving so fast and so well.

Please trust me that I have to sort it all out into a sensible narrative.

NO CALLS PLEASE - ROBBI AND I HAVE MUCH TOOO MUCH TO DO THE NEXT 24 HOURS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

DAY 35 - 012807

Robbi's Update:


Today is David’s, (& Emily’s) ½ birthday. We’re a strange family, we celebrate ½ birthdays. This ½ birthday is the most important one David has ever had. 6 months from now he should have a beautiful new strong immune system and taking a walk in the warm July air. Life is amazing.

When you’re normal immune system is humming our numbers are around 4,500. David hit Nadir on Tuesday which was 0 and today 5 days later his number is up to 1,900. This is wonderful! In fact so wonderful we’ve been given the heads up that David may be released to come back to our hotel room on Tuesday and be out-patient status for the next 2 weeks. I am cautiously very excited. This is at least a week earlier than we expected. Dr. Ann is very satisfied with David’s progress. We could be looking at the final weeks of our stay here. I prepared myself the best I could for “what if’s” but it didn’t occur to me that we could be ahead of schedule and I didn’t dare to dream of successfully being at the end of the process so soon. I’m very facklemped!

Life is amazing!

~ Robbi

DAY 33 - Flashback - 012607

Yes this was the day of "Earthrising".

It was also the day my big sister, Ilene, came to see me. For all the phone calls, and blog updates, you see that the message of our journey doesn't quite translate into words the way it does face-to-face.
The difference between what they expect to see and what I actually look and act like - is different.

Ilene's jaw didn't drop open. But, the it makes an impact when at the hotel - she had to shower and change clothes, to shed all that may be picked up along her travels. Then she arrives at the hospital and has to put on a gown and gloves.

She stepped into the air-lock space, and learned the pre-wash and timing procedures and then entered the room.

I could see her heart ache to hold her baby brother... (I'm still that cute).

So much to talk about.... Me, Robbi and Me, The Kids and Me, and then what Ilene thinks of ME...

Oh, and we have confirmation that there is an airport in August, ME

DAY 32 - Flashback - 012507

Thursday - I WAS A VERY BAD BOY...

All I'm allowed to say in this public forum is:

"To best of my recollection, Senator..."
"I love you Robbi."
"I wouldn't be here today without my nurses, techs, and doctors."
"I LOVE YOU ROBBI."

===========================================

What can be say about the events of this day are:

a) The cause of the A-Fib was determined by Dr. Ann
b) The cure involved adding and removing medications from my routine.
c) The fix took a period of time - during which my behavior was NOT NICE! d) The A-Fib was u

Rather than apologies and special thank yous - I award a round of GAME BALLS: Tania, Heather, Ginger, Dr Kong, Debbi, Dr Ron, all the patients on 3-North
.....AND MA BARABAN!!!!!!!

DAY 31 - Flashback - 012407

This was the day I received 3 bags of transfusions:

Platelets are yucky yellow looking. But of course platelets are vital to life. This bag was about 1/2 liter. It was put up on the IV Tree and turned on to flow fast! I think it was inside of me within 15 minutes.

Then came the Red Blood Cells - 2 unit (bags).
A SPECIAL GAME BALL GOES OUT TO MY DONOR (anonymous)!

These are dripped in more slowly. The blood cells are warmed as they pass through the pump. I get a little Benydryll to protect from allergic reactions. It makes me sleepy.

Now the A-Fib has continued and the doctors are ordering EKGs 3 times a day. I'm getting lots of attention... OH YAH, I'M HANDLING IT FINE.

There is a parade of doctors, techs, and test machines, through Room 357.

The way that I feel the affects of the A-Fib are:

a) My blood pressure is very low. Often it is (Low)80's/(low 60's)
b) My heartbeats are very irregular, and I can't really catch my breath.
c) I constantly feel like I'm nodding out -

This is why I hadn't posted regularly!!!

The day ends with everyone thinking we may have a clue - but the A-Fib persists....

Even Ambien doesn't quiet the mind..............

DAY 30 - Flashback - 012307

Tuesday was a day of great anticipation. While my new stem cells are flowing around (they are a week away from Grafting), we are watching the daily blood reports to watch the demise of my original Immune System.

52 Years of colds, mumps, cuts, broken arms and Scleroderma, have worn it down in ways that science can't yet understand - so we are trashing it!

I awoke feeling great on Tuesday. I had energy, motivation - I was ready to kick some ass!

That morning, an exercise bike was brought into the room... It was donated by a friend of Debbie (The Boss). It was sterilized and ready to use immediately! I Sat on it and set all tension rating to "1"... I proceeded to pedal 0.1 miles! The is the exact distant for my garage - to our mailboxes, at the end of the road. I was alone and doing the Snoopy Dance!

Now fast forward, oh, 5 minutes and it was time for vitals... A new development!

Atrial Fibrillation, or "A-Fib", as we on the inside refer to it.

Quick Def:
Atrial fibrillation is a disorder found in about 2.2 million Americans. During atrial fibrillation, the heart's two small upper chambers (the atria) quiver instead of beating effectively. Blood isn't pumped completely out of them, so it may pool and clot. If a piece of a blood clot in the atria leaves the heart and becomes lodged in an artery in the brain, a stroke results. About 15 percent of strokes occur in people with atrial fibrillation.

{Now you know why we weren't so quick to post play-by-play, throughout the diagnosis, head scratching and treatment phases.}

DAY 33 - 012607 - Life Rising

On Dec. 24th 1968, Apollo 8 was the first manned flight to pass behind the Moon - loss communications with Mission Control - and emerge safely on the other side. This photo was called "Earthrising" and was the first time humans had witnessed the beauty!

I remember watching TV with my family, and we held our breathes, listening to radio static (and Walter Cronkite) until Frank Borman broke radio silence with "In The Beginnining..." - Genesis.

I do not assume to compare my experience to the grandeau of these events!

My comparison is relatative to the personal experience of what Robbi and I just went through.

Generally, we have shared so much of our daily happenings. We laugh and joke and mostly it is easy to do so; even though, the doctors aren't smiling and the nurses are consulting with the doctors before even routine tasks can be completed.

We just passed behind the unknown.

Our entire medical team was challanged as they had not yet been...

My next postings will provide the detail -

My Medical Team, Robbi and I are better now.

It's Taking Long Than I Expected...

....before I will be able to get all that has happened in the last 3 days reported. Tonite I have to take Adavan to relax enogh to get a good nite sleep.... Sweet Dreams Everyone......zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

I'M BACK... A LOT HAS HAPPENED...

I've had some medical 'glitches' that we have been working through.

Bare with me as I get these posts sorted out and published for you.....

DAY 31 - 012407

Robbi's Update:

Today around 3am David hit Nadir. That means his prior immune system is gone. By the time Dr. Ann came in this morning his count was on its way back up. By the end of the weekend we’re expecting to see signs of new life.

David spent the day checked out. He even took off his blue tooth and his computer was off to the side! While sleeping like a baby they gave him a tune up by giving him a blood and plasma transfusion. All of David’s numbers were very low today so they wanted to kick him up a few notches. Other than that he feels great.

Miss my kitty ~ Miss my bed ~ and believe it or not I MISS my STOVE and OVEN!!! I can’t wait to have a stove & oven again!!

~ Robbi

DAY 30 - 012307

Robbi's Update:

How very sweet you all get nervous when you don’t hear from me. We’re fine. In fact David is defying science so far! He feels much better than he is supposed to. A few little kinks but nothing serious. (David will give details tomorrow.)

I had brought books to read to him, music for his listening, and air fresheners. I had thought that by now he’d be laying there staring at the ceiling and I’d be wiping dribble off his chin. Nope, he’s on the phone, EATING, and sitting up. He still hasn’t hit Nadir yet but they expect he will tomorrow. I stand at the door and make sure no dust gets into the room. If someone sneezes a mile away I sterilize everything near his door and around the perimeter of the hospital.

If you read his blog last night then you know yesterday was a very stressful day; organizing his way out of his room to have an x-ray. David was very nervous. Understandably. A germ could KILL him. But Debbie once again was right by our side and made sure everything happened without incident. I feel like I’m in the Wizard of Oz and when I wake up I'll have all these wonderful characters to tell you about.

It’s a full month today, that we have been here. I haven’t taken off my Ugg clogs, jeans and sweatshirt since December 26, 2006. YES, I’ve washed them but couldn’t put them back on fast enough when they came out of the dryer. I think I’ll stay dressed this way for the rest of my life.

Shawl #1 went to David and he uses it all the time.
Today I gave my 2nd healing shawl to a woman that was just harvested. She is getting the first stem cell transplant for cancer at MGH.

I’ve been dying to say hello to the patient that is across from us but where we are you don’t breathe and you don’t touch anything. But today her door was open and I poked my head in to say hello and tomorrow healing shawl #3 will go to her. Her room is not under the same care restrictions as our's.
She’s a doll and her name is Rose.

I can’t believe I’ve been gone a month. It feels like I’m in a long dream. I had to talk business last night and I felt like I was going to have a heart attack. Thank you, June, for being there and allowing me to focus on things here!

I sign off tonight wishing one of my dearest, most precious friends a VERY HAPPY BIRTHDAY!! Today she is 27. Well she looks and acts like it. Huge hug!! XOX

~ Robbi

WAS I THE ONLY ONE TO MISS THIS NEWS????

Was I in a comma or something????????????????

Spring Training camp to open on Feb. 18

The Boston Red Sox begin their 15th year of spring training camp in Fort Myers, Florida, one month from today on Sunday, February 18 with the first workout for pitchers and catchers at the club's Player Development Complex.

========================

Baseball, in the words of A. Bartlett Giamatti, lover of the game, fan of the game, Commissioner of Major League Baseball (1989):

"It breaks your heart. It is designed to break your heart. The game begins in the spring, when everything else begins again, and it blossoms in the summer, filling the afternoons and evenings, and then as soon as the chill rains come, it stops and leaves you to face the fall alone."

"There are a lot of people who know me who can't understand for the life of them why I would got to work on something as unserious as baseball. If they only knew."

"There's nothing bad that accrues from baseball."

Thanks Bart. Thanks Jayme.

Not as Geeky but more fun than StarTrek

So, we get the call to prepare to suit up at about 4pm...

Terri brings in the wheel chair and blankets, gloves and masks (I get to choose, because it's hard to breathe for more than 1 minute in any of type - or so we thought)... The chair is covered in 2 blankets... I plop in... and Robbi and her begin to wrap me up after I put on the mask and gloves... Debbie (The Boss) is the self-assigned driver.

Here is the Star Trek reference: The episode that was about a criminal trial of the "original" Enterprise Captain (pre-Kirk), and he was in a special chair that encased his body. I resembled a low-budget version of that - sort of high school video class.

We enter the hallway - my first time outside this room since Sunday, January 19th.
They put me in an elevator that is 10' from my room - very cool. Robbi is wheeling the IV Tree, which is not easy when you move it around for yourself - and she is coordinating my tubes with Debbie's driving! KUDOS to both of them!!!!

Onto the 1st floor... I am an intimidating vision... and ain't cause I might be mistaken for a 6'7' 305lb Defensive End... it more the way people fear the Theme from "JAWS" - you can't see it, and you don't want to... Not because your scared of this tacky movie, but because your annoyed! And that is why people look at me and stand-off... Our plan worked: If you can't forcibly clear the way - you make it look as appalling as possible - Debbie is a MASTER!

Debbie find the Xray Room and the Tech - Casey, a college intern... and you think the plot thickens? Not really... Except that Casey didn't know the exact key-strokes to pull up the online order for my process, He was Awesome! He made it fast. When he had to reposition me for the "shoot" I told him to imagine that I was infected with the Plague, he responded accordingly and will make a Class A Medical Professional.

Last notes:

a) The mask I wore is a type that has allowed me to breathe for extended periods - I wore it for an hour!
b) When we exited the elevator, on 3-North, I was out the door first, so I leaned forward to see and report "All Clear".
c) The cool air on the first floor was VERY VERY NICE to feel.

Everything adds to the prospective when you wake feeling safe and kinda cool... about 10am you hear that you have to go into a world that could kill you as easily as it won't... then you spend 3 hours planning to maximize (but never guaranteed) success... and then you execute with the best team you could be apart of... then you take a sponge bath by yourself in your cocoon, watch "Deal or No Deal" & "Heros" and write stories into cyber space... Does it get better than this?

I think not.

I love you Robbi, Jayme and Emily (and Sam and Gus too).
Sorry, no pics.

DAY 27 - 012207a - Patient Updates

More on the Neutropenia Details...

It looks as though I will get a transfusion of red blood cells, Tuesday. This is to boost my current hemoglobin count of Less Than 26% (You (normal? ha ha) all are usually between 42-52%).

Wednesday or Thursday, I will likely get a transfusion of platelets. All of you are expected to have 150K-400K of these little suckers (per some volume, or other).
My count Monday is 36K and likely to fall. Again, this is an expected development.

Don't worry though, (oh, your not...) my transfusion is added via my surgical appendix - The IV Tree - and I will just keep typing away while they check my vitals for 2 hrs. (Now, you're worried.)

DAY 27 - 012207 - Patient Updates

Approaching NADIR, but not quite there. I'm feeling way too good for someone who can't be in the same room with fresh fruits or vegetables. (Organic & Fresh are breeding ground for scourge and death... just ask California farmers).

I am Neutropenic. Do I need to re-quiz everyone? (Hint: unable to defend against infection.)

Dr. Ann admonished me for not exercising my lungs enough - It's like she thinks I can suddenly breath easier? No, it's a process that helps keep fluid from increasing in my lungs and inspires me to maintain/improve lung performance.
Jane (My Mentor) still uses hers to exercise her lungs. Yesterday, she told me that she sang solo for her church choir and is looking at possible opportunities to return to teaching choral.

Just found out that I am to get a chest xray today.
This requires that I be moved from my cocoon, on 3-North into the general population... down the elevator... and up to the hospital entrance way where the Imaging Dept is located.
I'm told I will have a mask and gloves, and No Waiting Status in the xray room.... I think that is good for basic precautions... Not feeling basic right now.

I paged (The Boss) to make sure that I have PRIORITY 1 CLEARANCE, so that a casual walking typhoid carrier isn't walking and coughing into the hospital just as I get to the doors - that would suck.
I don't want a visitor in the maternity waiting area (right in front of the elevators) to be holding their child with a pre-diagnosed case of the Flu.

NOW FOR THE ANSWERS TO MY CONCERNS:
(In the interest of full disclosure, I want to see/show what may/may not seem reasonable in this affected mental state of mind - diseased, SCT, and assorted pre-existing psychotic conditions.)

1) Debbie (The Boss) is going to drive the wheel chair.
2) Robbi (armed with Robbi's eyes, and 2 armed neutron bombs), will ride shotgun.
3) We will only enter an empty elevator.
4) The xray dept will call ahead and move me in/out without delay.
5) Optional - Robbi wants to wrap me in Saran Wrap... we are privately discussing this now.

Stay tuned... Film @ 6...

DAY 27 - Please READ: GAME BALL posting

It is too important to be missed.
I had posted it, out of sequence.

Hey, I still learning here............

DAY 26 - 012107

Robbi's Update:

Intense weekend of staring at David. Like waiting for water to boil. He’s heading back down from the chemo from last week. This is expected and necessary. This is what we learned NADIR was. He will hit his lowest point as he did 3 weeks ago and Wednesday or Thursday he will begin coming back up. This means that the chemo is continuing to kill off his immune system and his new stem cells will slowly begin to build a new one. Tonight I’ve noticed him slowing down and becoming a little cranky. Cranky, can you imagine! Geez!
{Editor's Note - HEY, SHE SAID SHE WOULDN'T DO SOMETHING FOR ME WHEN I ASKED REALLY NICE.}

Emily had an interesting 3 days up here with us. She realized ME is not a place she’ll be considering moving to too soon. Way too woodsy and way too cold for her liking. We had some “girls time” while going back and forth to the hospital. We went to see "Dream Girls" yesterday. It was nice to get lost in a movie for a couple of hours together. Then when we got back to the hotel and rented "The Devil Wears Pravda". Last night at Applebee’s which was packed, Em overheard someone saying, “I figured it was too cold for anyone to go out tonight”. This person’s friend replied, “People are like moose, they just keep moving in the cold”.
You know you’re not in Westborough when you hear a reference to moose.

I left David yelling at the TV and waiting patiently for the Pats game. He and Jay will be on the phone together watching the game and they’ll yell at the TV together. They can hardly wait.

FYI, some of you may not be aware that David has a blog. Please feel free to log on to - http://desktopdavid.blogspot.com/. David gets much more detailed than I do about the procedure but some of you might find it interesting. If nothing else you may find it entertaining. He has about 100+ people tuning in everyday to see what’s going on.

All the nurses click on each day and get a kick out of what David writes. They’ve shared with us that it’s so cool to understand the patients side of the story. It’s also nice because his blog is starting to help people out there who are considering doing this. If his writings help someone in any way then he’ll feel like he’s made a difference.

Signing off with a cheer for the PATS!

Love ~ Robbi

Who was David (Before Robbi)?

Sitting and watching the Saints vs. Bears Game: Robbi makes side comment -

"It's hard to imagine that you did anything before me."

without hesitation, I respond,

"I didn't. I was just an amoeba, in a petrie dish waiting for you to make the difference."

I know how to make her smile - just like she does for me.

Personal Medical Manager GAME BALLS

Say What You Mean,
Mean What You Say,
Don't Say It Mean.

When you apply this premise to personal health care, you become a Personal Health Care Member (at this moment I proclaim the rights to this term!). Many of you have heard me use this term for years, now.
When Robbi and I began the quest to gain understanding of Scleroderma and the health industry, we already had personal traits that led us to question, probe, and assert our influence on the outcomes we desired.
This Roll Call is intended to make sure that many names (whether previously mentioned or not) get a moment in the blog for a GAME BALL.
Some mentioned in this Roll Call are self-managed professionals who set standards for this level of performance, and others may have learned the critical team values from this first time experience - and seemed to "get it" the first time.

GAME BALLS are forever - but your participation on a Personal Medical Team is to be earned by every action you think about and take, on behalf of a Personal Medical Manager. (The members of my Personal Medical Management Team {this is mine too} know who they are, and may or may not be on this list today...

GAME BALLS:

BLOOD BANK/LAB - @ MGH - Sharon, Barbara, Judy and Laura - They owned my cells right up to when they delivered them into my body! They Researched, developed and implemented the whole procedure (from scratch) for MGH. IT WORKS!!!!!!!!!!!

RED CROSS (Philly) - Betsey - Not only did she step up (when UMASS Admin declined to participate), but has since setup a long term arrangement that will benefit future SCT at MGH.

Cert. NA's - Kristina, Nilda, Misty - for the new bed, and answering my Service Bell!

Nurses - Laura, Kim, Kristi, Monica, Helen, Jody, Sue

The Ultimate apheresis Operators:
CINDY! (waves at me daily), Amy, Tania, Heather

Terrie - our clinical educator - You and your staff get 4.0 from me! (I'm sure you grade on a tougher scale)

NURSES, NUTRITION, HOUSEKEEPING, BLOOD TECHS - from all over MGH - Those of you who have worked more hours in other areas, so my assigned team can remained focused on this new and intensely intrigue process.
Some of you stepped aside because you may have been exposed to someone with a cold - so co-workers from other areas had to be called upon and quickly & indoctrinated (by Me as well!).

MGH Nutritionist - Dan - (I love my cookies) - my weight is stable

Attending Physicians - Dr. Marrache {Van Halen CD (though, not on my list of best guitar solos)}, Dr. Benzinger

HAMPTON INN STAFF - Dave Doucette (Mgr) - still caring for Robbi with 5-STAR Quality

Patti & Sterling - installed my lines (they are working PERFECTLY!)

MGH Admin - Troy, Barbara, Sherri, Marti, Dirk (I love my room), Pastor Joyce

JCAHO Joint Commission - Hospital Accreditation group that standardizes life affirming programing, such as the the trial that we are conducting here.

MGH IT Dept - Dan - "My Brother" - Thank you, for being able to speak to the world.

Housekeeping - Mary, (who clean every day like it's a "discharge" and are not intimidated by constant page-calls.

Lab Techs - you all had to learn what NOT to do around me (MGH's new quality levels) and still sucked my blood without missing a drop.

Patrick - UPS Manager (who let Debbie in the door after closing - to get my stem cells on the flight to Philadelphia for processing). Talk about being a Play-Maker. The clock was running on the limited hours that they could remain viable!!!!!!!!!! (else everything for tha last week was wasted - including the money).

UMASS - Ann Marie (an angel)

MY Sclero Bros & Sisters - Marilyn, Jane, Devona, Amy, Domenic, Richard, Paul

Dr. Ann - My Mad Scientist
Dr. Hertler - you are cool
Debbie (The Boss)

John Mac - my best friend, of 37 years - who will never read this because he has recently become nearly totally blind. The diseases that attacked his eyes will someday be overcome by SCT technology.

All of our Sclero CareGivers, Fundraisers and Donors!!!!!

DAY 25 - 012007a - Patient Updates

Sorry for the delays (it's actually Sunday now).... I was not not comfortable enough to work on the blog. I wasn't sick. Didn't sleep well until I took the Ambien (I'm nominated as poster child).
{I have to remember to relate my dream/story at a later time - It is either movie script quality... or not}

There are a lot of questions about what I'm feeling physically, today, and what is expected over the next few days:

012007 -
I am running a low fever today. My norm is 97.4, today I've been running 99.4 - 100.4. Not to worry. It explains why I was feeling more introspective and focused on discomforts. Of course, from that I wrote out the battlefield replenishment plans - (my Dad smiles when I draw on military references).

Questions for Dr. Ann, during rounds:

- - - - - - What is expected next?

My body is going through 2 distinct processes at the same time.

a) The chemo of the last week is systematically removing my existing immune system.

b) My body is being prepared by Dr. Ann, with prophylactic therapy and tonite, I will receive a shot of Neulasta. This is the stuff that stimulates rapid growth of white blood cells. This process will slowly escalate over the next 8-10 days. These are the new white cells that begin the new immune system. I will be a regime of antibodies now. This is to minimize my exposure to mild infections.

c) Other participants with this protocol have received platelet transfusions. It is possible for that I will but the indications have not presented yet. Not a big deal from what I hear...

That's it for yesterday.... except that I was all set to watch "All The kings Men" & "Munich", but realized that this laptop does not have a DVD decoder package in it. That the drawback of using borrowed equipment. As It turned out, I wasn't in much of a mood for a movie... I still had to finish my assignments for today's games: I'll not disclose my bed, table and IV coverage plans; but I think the post game commentary will include allot of "David was dead-on, on that idea....", and "Does that David ever SHUT-UP?!?!" (answer - no).

DAY 25 - 012007a

Today is a day of replenishment.
I'm feeling reasonably well this morning, physically. The only aches are from not finding a comfortable sleeping position. - I miss my bed at the hotel. THAT is a cool sleeping machine! -

Mentally - I'm ready to reinforce, supplement, and nourish the troops.
I've been focusing on the stem cells and they are circulating and finding their positions just as Dr. Ann game-planned. Communications with them are clear and bi-directional.
My exterior surfaces are evolving and preparing for their next assignments. Hair continues to shed, as my body once again approaches NADAR (base line neutropenic). This time It looks as though my beard, body and pubic hairs may fall out, also.

I am planning to take a luxurious face-cloth bath this morning. It takes me about 1 hour (mostly sitting on a towel covered chair) with 4 face-clothes, 3 towels and Howard Stern playing in the background.... aaaaaaaaaaaaahhhhhhhhhhhhhhhh - does life get better than this?!?

Time to pamper myself....

DAY 24 - 011907

IT'S A BOY!!!
A Bouncy, fuzzy headed, (still bearded) 52 year old boy!

David’s stem cell transplant was a success! Dr. Ann came in starting the day off saying “Happy Birthday” to David. Every January 19th will be David’s 2nd birthday from now on. This is considered Day 0 of his new immune system. Tomorrow is Day 1. Em and I witnessed the entire procedure snapping photos and writing notes. Absolutely fascinating. It reminded me of a human oil change. David slept through the whole thing. He looked a little like a drunken guy passed out during the whole thing. Oh yes I’ve seen him like that. Many years ago. The nurses kept him warm with warmed blankets and sips of water every now and then. 7 bags of brand new stem cells. 7 bags of a possible new life. Amazing.

Now we sit, pray and wait. Each day they will check David’s blood count to see how he’s doing and if the new immune system is building properly. This next week is very critical.

Meanwhile, David’s spirits are good. Dr. Ann says "his body likes what they did to it". That makes me smile.

Tired and smiling…

Love,
~ Robbi


[Patient Update:

I was pretty wiped out for the procedure. They pumped me with Benedryl and Adavan - good stuff if you don't want to know what going on.

Before everthing got set up, I was anxious that way I am when the poker guys are coming over... Do I have everything ready? Food, ice, is the cat put downstairs (Bob has allergies), have I picked out the good food stuff that everyone will enjoy? Just like this Transplant, the pros will take care of themselves and the game will be perfect - but the anticipation and welcoming is the the exciting part.

The only battle I'm fighting now is the the fluid I/O ratio. I keep losing ground and they give me that damn IV of Lasix.
Listen to the putz ---- (If this is the worst thing that I come away with, then I would be willing to drink shots of it everyday) but, if I can be endulge in a simple whine - I dispise the cramps and constant peeing without relief.

I stink - or so I'm told. A fallout from the Transplant is that my body reecks of garlic. It has something to do with the mixtures that the stems are are conditioned with. Robbi and Emily didn't notice it until they left tonite, and won't hug me.... their misfuture... I'm pretty lovable and cuddlie right now.

Looking ahead:
Saturday and is going to be quiet. Emy and Robbi are going to take some "girl-time". I'm going to chill and maybe rent a movie. I'm told that I should be feeling as good as at any time through the process. I know I'll be talking to family and friends on the phone. I've set up a few such times.

Sunday is a magical day in the making...

A) Bill Richardson, Governor of New Mexico, will announce his candicacy for the Democratic Presidential omination - on the ABC News program with George Stephanopoulos (or as Jayme referrs to him - Snuffalugglus.... (no offence intended).
This is cool for us because Jayme has personal ties to the Governor's staff.

B) There is a pre-game game at 3pm with 2 teams that hope for the chance to finish 2nd in the Super Bowl.

C) The Patriots @ 6:30pm.

By the time that game ends I'm expected to be going down to NADAR - the lowest point of immune protection that I will ever reach (intententionally).

It's now 11:45pm - and Robbi is yelling in my mind - GET SOME SLEEP!

Good nite all...........

I Always Wanted To Be An Astronaut - 011907

I grew up in the romantic days of Alan Shepard, John Glenn, Mercury, Geminni, and Apollo. 100 6 and 7 year olds crammed into a classroom to watch a fuzzy & shifting image of a rocket lifting off. Today, I feel as though I get to walk out of the building and wave, as I hand myself off to the capable and deserving hands of my mission control.

I'm alone now, at 4am and I slept OK. My final meal is a cough drop - the best one I've ever had... next up, AM meds (steriods)...

5:15am - Anxious, spitting up phlem, take my cough meds to control this... ordered my ritual iced coffee for...

6am I get reconnected to saline lines and they check my blood counts. BTW my sugar counts were down a little last nite - insulin is on hold.

6:45am - blood draws.... sugar is down...

I must sign off - all I'm doing is listing facts.... I'm boring myself!

I'll see ya all on the other side - at splash down.

THE EQUIPMENTS IS ARRIVING!!!!!!!!!!

THE HORSE IS IN THE BARN - 4PM - 011807

Terri just came to tell me that the Stem Cells have been received by MaineGeneral Blood Lab and have been observed to be in perfect condition. The container has been secured and is will be delivered to my room at 7am tomorrow.

I'm not sure sure just how or when my postings will follow. There will likely be some delays...

Thank you all. There are so many of you that will undoubtably remain un-named in these postings - but I expect that you will be acknowledged in ways that honor your gifts to me, my family and your own loved ones.

Love, David

Emily is Here!

Right now at 4pm she is with Robbi. I will hold her in an hour or so. She is going to to be my photo journalist. She will document the nest couple of days - to include the Transplant.

First, she needs to get to me, and I am ready.

DAY 23 - 011807

GOOOOOOD MORNING! I've been up since 4am, It's 6am now. I had an Ambien at midnite, so I'm a little groggy but otherwise OK. My mental focus is clearing and I'm feeling that I am once again in the driver's seat.... not that anyone should allow me to drive anything other than an IV tree.

I've been able to by-pass the Lasix for 2 consecutive check-points. As long as my overall pee-output is greater than my fluid-input I win a reprieve. The discomfort and constant hassle of the ritual of peeing every 5-10 minutes makes you think of "stuffing the ballot box" with tap water and spit. {NOTE TO DR. ANN: I wasn't that smart when it mattered.} Now I'm feeling like I really have beaten the system with my own good internal plumbing system.

We often accept changes to our bodies, such as the greying of hair, the slowing of our processing abilities, and how fast we move - compared to how fast we want to. For me it's my fingers. Now, I've met people whose fingers are curled fully into the palms of their hands. I'm no where near that degree of restriction. Neither am I complaining. For me, the limitations are gradual and interesting:
My poker buddies remember when I had trouble shuffling cards. One of them, Bob, found a auto card shuffler and I used that for many months. Once that became even a slight challenge (and they stopped forgiving that I would occasionally leave a card in the machine and we would play a round of games with 51 cards) they started to pre-shuffle my deal. [Hey - whats a couple of undetected misdeals, among friends.]
My fingers have curled in slightly more on the right hand, than my left. Because of that I think that my ability to hold and throw a softball is going to be permanently impaired (unless I get hand surgery which is not in my plans). Therefore - I announce to mt teammates that my rehab assignment this spring will be to teach myself to throw and catch left handed.
OK - so this isn't exactly like learning to paint masterpieces with my toes, or even to learn how to live without eye-sight like my best friend John is currently doing. It's just me taking baby steps, to keep loving to live.

2 minor set backs:

a) My blood sugar is up to 289. This is not unexpected, as the steroids I'm taking affect the pancreas [and don't do a thing for my my home run production!!!]. That, in turn limits insulin and - WALAH! - I get an insulin shot later today. Increases in blood sugar, increases risk of infection. This I learned from, my son, Jayme who has Type-1 Diabetes.

b) My fluid intake exceeded my output by more than 1100ml which meant that they had to give me the dreaded Lasix. From 2pm-4pm I'm peeing every 5 minutes and crampy.

AS I WRITE THIS: Amy, my nurse, just disconnected the lines for my fluids!!! The chest lines remain in place for the Transplant - Tomorrow at 8am!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This posting is done... stay tuned... film @ 11.........

Thank you "tropicalkaren" (a 6 yr cancer survivor, who commented on last lites post) - You gave me something to help shape my new perspective.

DAY 22 - 011707b

Robbi's Update:

Last Chemo! Tomorrow will be final preparations for receiving stem cells on Friday morning. David began the day ordering a stationary bike for the room. By the end of the day things quieted down considerably. His body is demanding he take off the blue tooth and lay down already. The next few days into early next week are expected to be rough. We have plenty of chocolate, the Pats on Sunday, and Emily will be with us to warm our hearts.

Meanwhile with the storm coming on Friday and Sat I’ve decided to rent a 4 wheeler. My car is acting very snobby up here. She wants to know why she isn’t in her garage and isn’t happy about the icy conditions. When I went to start it this morning at -4 degrees I swear I heard, “Are you joking?” Note to self; Stem cell transplants should be done someplace “resorty” and warm.

We’re ½ way through! I miss you all.

Love,
~ Robbi

[Patient Update:

I started the day feeling like, "What's the big deal? I lay around in bed, call clients, listen to Howard Stern on my laptop, and email & blog all day... What am I doing that is so special?"

Yah, I know I have an incurable condition that, if unchecked, is likely to kill me in a year or 2 - and I live in a place where family, friends and strangers have contributed MASSIVE resources of love, support, and money to give me the best opportunity to change that script... So, what makes me so special?

When I began this rant, I felt that I might be on the cusp of the answer to that question - but I'm not. I've been playing this around in my head since the nite that Robbi, Jayme, Emily and I decided to ask for help. The answer is not clear yet... I know it's there. I can feel it. We all have an answer. I'm just a little slow on the uptake.
======================================

I was feeling pretty peppy this morning. I began doing laps in my room. Picture me schlepping in pajamas, rubber souled socks, my Healing shawl and a head warmer cap, around a 12x15 room. I get a clear path of about 10' one way - turn and walk back. That's 1 lap. Oh ya, while I'm doing this I have to wheel my IV tree in front of me. All I could think of is my bro-in-law Steve telling me "no pain, no gain". But in this case the only pain was the PAIN IN THE ASS IV TREE! So I called Debbie "The Boss". I asked her to get me an exercise bike. Just a small portable unit, that could be put into a corner of the room. My plan is to have an activity by which I can benchmark my energy level. Currently my major activity is to get up to pee 50 times a day (I hate Lasix!). I think I could peddle alittle while I wait to piddle alot. Debbie is looking into it for next week when I begin my recovery phase.

Tonite, was a mildly bumpy ride, anxiety, quickened respiration rate, and fatigue. Then as the nite went on, I got better and now it's midnite and I'm finishing up another day.

Tomorrow my Emily is coming to stay with us for the weekend. (I'm Snoopy Dancing... and Robbi is flying like Woodstock).

Good nite to all......... zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

DAY 22 - 011707a

I've decided that there is so much info piling up and ideas from the readers that I am going to try to multi-post.... I might try to focus on 1 or 2 topics at a time. But the ADD may take us all on a roller coaster ride at any time - so hang on.

Hey look at me. Robbi says I can't walk and chew gum at the same time, and here I am writing, calling, taken care of clients and growing a new immune system - all within the confines of my hospital room.

Over the next week I'll be UP and DOWN, so my postings will be eratic...

Dr. Ann gave me more of the game plan this morning:
1) Today is the last of the Cytoxan (chemo), at 5pm.
2) Tomorrow is the big dose of CAMPATH which is the stuff that cleans out the remainder of my immune system. My stem cells will be flown in from Philly.
3) Friday is T-DAY 0
At 8am my room will be filled with doctors, nurses, technicians, 7 frozen bags of my stem cells, a thawing bath, Robbi and me.
It is typical to refer to this day as the recipient's Birthday - HOWEVER - I already have the best birthday I could ever want --- July 28th --- the same day as our Emily. I'm not giving it up!!!
I will be sedated during the process, which takes only about an hour. The side-affects are not going to be pleasant... I'll spare you all the details until I have the actuals. (Think GhostBusters slime).

Right now, I've just got the last chemo and I'm feeling fuzzy. More so than previously. I may sign off for tonite.................................

DAY 21 - 011607

Robbi's Update:

I never know what to expect when I walk into David’s room at the hospital. I always expect him to be zoned out from all the drugs. But not David, he’s like the energizer bunny. I walked in today and he’s bright and chipper on the phone helping a client and has 2 more calls after this one. I think I’m actually in his way! I’m the one that’s zoned out! All I want to do is sleep and he’s conducting business while the nurses are taking his vitals. He’s just sitting around with all kinds of meds flowing in and out with a bald head, talking on the phone, eating whatever the nurses bring in to him. Not only conducting business but also advising another person who has systemic scleroderma on where to get help. Yep, that’s David. I’m very grateful that he’s so distracted.

Jayme FINALLY got home. 22 hours later. Jay likes to do things with flair. Left us at 10am 1/15 to head for Portland ME airport. Delayed in ME due to bad weather until around 2:30pm. Caught a flight AZ then on to Vegas (now 12am 1/16) and met up with a few friends for dinner, then to El Paso only to get to his car and try his spare key, (why???? because he left his lap top and set of keys in Westborough, and $140. later had it overnited to NM, thank you Bill!) and the spare key set off the alarm and shut down his car. Soooo, he called someone at his station, (now 3am and 5am EST) to pick him up at the airport, drove to the station and took a nap, then took one of the news trucks 45 min to NM (now 7am) to wait for Fed Ex to deliver his lap top and keys 3 hours later. It’s all good though because he has his book, The Power of Intention by Wayne Dyer to read while he’s waiting for Fed Ex. Fed Ex shows up at 9:30ish and he gets his keys and runs out to food shop, (because of course after being away 10 days you have green and blue stuff growing in the fridge) drove back 45 min to El Paso (now somewhere around 1pm) to the station to drop back the news truck to go back to the airport to pick up his car then back to NM to call me and let me know he was safely at home and going to bed, (now around 3:00ish). And the whole time we’re talking Wayne Dyer stuff saying to each other to “live in the moment” so we both don’t blow a gasket! I’m very proud to say we didn’t. J (Love you so much Jay! xox).

Dr. Ann came in to let David know that everything was going perfect. She said to expect that this weekend in to next week he will once again be Neutropenic and won’t feel too hot. She’s been amazing. We’re in such good hands.

On Friday 1/19 David will have his stem cells transplanted and they will begin their way to creating a new immune system. They check him every 15 minutes. The staff is incredible. You know how if you’re in the hospital there’s usually a Godzilla nurse? There isn’t anyone like that here in the whole hospital. EVERY single person we meet we fall in love with. I can’t imagine saying good-bye to any of them. Even the IT people who come in to hook David’s computer up are sweet. I want to bring them all to Westborough to introduce them to all our family and friends! It’s the same with the whole crew at The Hampton Inn. I feel like I’m home here!

Signing off with a smile. Thanks Jay.

~ Robbi



[Patient Update:
I'M NOT THE ONLY ONE---

This posting will introduce you to others who are doing the same as I am - gathering information, to make informed decisions, to fight the good fight:
Each of us comes from varied communities and personal backgrounds, but we face the same challenge.

Devona is a woman from Texas, with Scleroderma. She has taken on a fundraising campaign that has raised $13,000. She is scheduled to travel in mid-February, to Northwestern University, Chicago, IL, to participate in a study that MAY get her the same treatment that I am receiving. The study she is a part of is a 2-armed study. This means that she will be randomly selected to either get the stem cell treatment OR a treatment that is known to have some benefits for some people. The purpose is to compare the results to see if the stem cells really do better. (I had already received the alternative treatment, which is why I didn't choose a random study.)
Devona's treatment is expected to cost more than $100,000. Her insurance has twice rejected her claim.
Please take a look at Devona's story to understand a larger picture of the issues related to stem cell research and how it is needed: http://transplantfund.org/Restricted/patient-detail.cfm?pat_id=1688&CFID=4775768&CFTOKEN=56363841

Next, meet Amy and Sheila. ( Since they are not publicly declared I must be vague.) Amy has a very aggressive form of Scleroderma and is just beginning to gather the information she needs to make informed decisions. The doctors she has spoken with are all focused on their own chosen protocols which means she is left to fend for herself. The insurance industry does not willingly pay for trial procedures, and the funding from the FDA and NIH are guided by insurance, political and drug industry lobbies. This is because we have yet to developed strong patient/consumer advocate systems that may act to bring the best opportunities for us to manage our own health care with results and fiscal responsibility.
That is where people like Sheila come in. As Amy's friend, she has chosen to step in to help her sort through the haze, and act as her advocate.

For me it has been Stacey and Elliott Berger. They are the angels who came forward to challenge the normal flow of our lives and proved that communities (local, regional, national & international) can be motivated to support and act to the needs of a single person.

Lastly, I want to tell you about Jane Erickson. A music teacher from New Jersey, forced to retire from the affects of Scleroderma. It was Jane, who was treated by Dr. Traynor in Aug. 2005 and is still reporting decreased symptoms in critical areas, improved quality of life, and (to my good fortune!) she has chosen to be the kind of advocate that reaches out to find people in need.
Jane has taken on multiple rolls, such as mentor to me and a growing list of others who can benefit from her loving guidance thru the heath care & fundraising maze.
I am forever grateful to her.

There are others that I am meeting and even re-meeting (Such as Edward, who I knew as a child - and now we both share a diagnosis). There is a man who lives less than a mile from my home in Westborough who has Scleroderma.

It's 12:30am... I hate to stop but from the the I wrote "12:30am" an hour has passed and now it is 1:30am... time to sleep.]

DAY 20 - 011507

I'M BACK... it's almost midnite but I passed up the Ambien so I could ramble on to get all these thoughts out of my head.

Let's see - Friday, was the day we slithered into Westborough. Robbi, always armed with camera, caught these memories:

If you are one of the 3 people that hasn't heard me say this - This is Jayme and Emily: The 2 Most Beautiful People I've EVER Met. It really works out well that they are also best friends, as well as siblings.


This is Bill (Emy's other best friend), Emy, Jay and Max. Max is my HERO.

On Sunday, 011407 I moved in to MaineGeneral Hospital.
This is my home for the next 3-4 weeks.

Jay is wearing his Troy Brown shirt that he has had for about 10 years. That shirt used to drag on the ground when he first got it. He only wears it on game-day.Other points of interest: Robbi is beginning the "home-ification" of the room. The pics on the yellow poster board, the chairs and table were ordered up by her too.
Jay is watching TV, while I'm filling out the gourmet menu selections... and in the upper right you can see my constant companion - the saline solution IV bag.

Robbi says this makes me look like "Sick Man", but HEY - it beats having clumps of hair falling out. That was what was beginning to happen. Robbi called me from the hotel to tell me that she found clumps on the pillow from the nite before. While we talked, I reached up with 2 fingers and easily pulled a clump of 20+ hairs! I didn't feel a thing... That's a weird thing.

I ring up the nurse and asked her to bring in the clippers and give me a buzz cut. The rest is history and captured here.

Oh yah, the pics on my chest are "Flat Sara & Flat Sam". They are the Briss Family Emissaries, who travel the world to participate in our family's lives. My mother was Florence "Briss" Rubenstein. (Many of you have met or heard of my niece, Joyce - she is the family genealogist and travel coordinator for Sara & Sam.)

This is baldy again with Laura. She is one of many highly skilled nurses, aides, technicians, and administrators that are caring for us and answering my calls (even the accidental ones) with just this kind of smile, and and unrivaled professionalism and humanity.

Now, if you know Robbi and I, you know that we are neither tolerate nor quiet if the service we expect is not provided... This team is AWESOME!

My setup crew.

Jay and I - wrapped in the "healing shawl" that Robbi made for me.

This is Robbi's Update from Sunday:

Dear New England Patriots, THANK YOU!! You kept my husbands heart pumping and put a huge smile on his and Jayme’s face. It was a great way to spend an afternoon getting chemotherapy!

We’re all tired but we’re all good. David has 12 less lbs and no hair and his spirits are excellent. The 12 less lbs was what they expected and the no hair part was his choice as his hair was falling out today from the chemo he received when we first got here. He had the nurse buzz him to save the mess. He looks a little sexy actually.
One day of chemo down and 3 to go. Jay and I just got back to the room after a long day making David’s hospital room into “home” for the next month.

The address to the hospital is:
Maine General
149 North Street
David Rubenstein ~ Room 357
Waterville, ME 04901

Hugs to you all.

Love,
Robbi

[Patient Update:

I'll try to keep it short (yah, fat chance...).

T-Day -5 (Sunday) went well (see Update, above).

When we arrived at the hospital, Robbi asked me if I have any second thoughts about what we are about to do – I give it a serious introspective search and said “No.” Especially that I know that my stamina is lessened since I arrived in ME. My overall condition seems to have worsened. At this rate, and according to the probabilities, my life expectancy is very short. The options are a) Do nothing and follow the known path to that, or b) make an informed decision to do something.

I expect that my legacy will always be “Regardless of the outcome, David always chose to learn about it, think about it, and do something about it.”

T-Day -4 (Monday) has been just as well. Of course it's now after 1am Tues. and I'm still writing, but I feel fine... and I don't exactly have any thing special to do today. I do need to eat more. The weight I gained Tues (6 lbs) was all fluid, not nourishment. They track the liters of fluid I get by IV and drinks, and compare the ratio of fluid I pee out. It's called the "I/O Ratio". I keep my geek-side amused by tracking this myself. So far: the "I" is greater than "O", thus the weight gain. The Mad Scientist (Dr. Ann) came in to see me, prescribed Lasix and left. Lasix makes you pee alot. Soon my ratio was leveling off.

Robbi put Jayme in a cab, to the airport. We have set up a "chain of custody" so that there are authorized signatures along the way to be sure that he ends up in Las Cruces, NM by Tuesday. Seriously - with flight delays to contend with Jayme made alternate arrangements that allowed him to reroute to Las Vegas and have dinner with 2 friends he made when he moved to New Mexico. I tell this story to express my amazement at how our babies grow, and make lives of their own and build a world of friends. Where do they learn to do that when all we try to do is keep them home and safe.

I waited all day to get online. The wait was worth it. Debbie brought me a Dell laptop that beats mine. I'm jazzed...

It's now almost 2am. If I don't stop now I'll have to change the title of this posting.

Sweet dreams all... pass the word - Life is Good.

Just got back on line Update - 011507

Happy Martin Luther King Day.

I have so much to write about, from the events and feeling of these last couple days - but I will get to that soon. First, I want to tell the word of the most special young man I know. Maxwell, my 7 yr old nephew.

Yesterday, Max and his mother went to church, as they do each week. At the point in the services when the congregation is asked if they want to have a prayer spoken for someone, Max stood up and said that he would like a prayer said for 'my Uncle David, who is very sick and in the hospital'. Yes I'm crying again as I type this...

I spoke to Max, and told him how special a person he is for his caring and that he asked all those people to pray for me. I think that what makes him so incredibly special is that, at 7 years old, to have the presence of mind to understand a) the gravity of my illness, b) the power of thoughts/prayers and c) the courage to stand up and declare his love and to take action on it in front of his congregation and community.

We should all be honored by the man he is becoming. Thank you Steve & Jane (his parents).

When my tears are all dried up, I'll return to the regularly scheduled blogging...

DAY 18 - 011307

Robbi's Update:

Hi All! I’m a little better from this annoying cold. Jayme is sniffling now too. L We snuck into Westborough today like thieves in the night to get a few things including some homemade chicken soup from Mom and from Karen R. and a few much needed hugs. We’re heading back up to ME first thing in the AM tomorrow.

The procedure has moved into high gear. Instead of beginning on Tuesday we got word that David will be admitted on Sunday 1/14. I’m a little facklemped…

I’ll be in touch as soon as things are rolling.

~ Robbi

[Patient Update:

SO! We sneak into Westborough so that we can be with Emily and it is BEAUTIFUL! Robbi's mom & brother Steve, Ben, Max (my nephew), and Bill are with us and it a short but very sweet moment.

I have to admit that I was very anxious to have all these people come into the house. I know it's bordering on compulsiveness to worry... but I know that I'm just a few days away from "The Show" and I just don't want to carry something in my system that will run rampant once my immune system is wiped out. Wrapped within my own anxiety, I nearly missed the beauty that was surrounding me.

Debbie (The Boss) called while we were sitting around - I am to report to the hospital for admitting at 8am SUNDAY! The original date was Tuesday. So this when the business side of medicine gets to affect the whole process. The initial plan would have required that my frozen stem cells be transported, from Philly to Waterville, next weekend. Well the Philly Red Cross had an issue with that. I don't know the details, but it is safe to assume that weekend transportation is more costly than the same amount of driving hours on a weekday. Now, with my cells being delivered for Friday the 19th, I'm beginning the Conditioning Phase tomorrow.

Here is how it happens:

TRANSPLANT DAY -MINUS 5 ---
(It's like a count down to a rocket launch.) The intravenous lines, in my chest are going to get a heavy usage now. 1st I get a bag of Mesna (do you remember that this stuff is to protect my bladder?). Then the chemo (cyclophosphamide, a.k.a Cytoxan). Then more Mesna - cause you can never be too careful about my bladder. and then about 210 hours of saline solution to flush me out. Of course they want me to get up out of bed as often as possible to urinate (can I just say "Pee" without offending my reading audience - thank you).

TRANSPLANT DAY -MINUS 4 --- thru Minus 2 (Thursday)
The same regimen as -5. The difference is that today, and each of the next 3 days, my body is getting the immune system kicked out of it. Chemo leaves you feeling tired for a few days after one dose. I'll be getting 4 consecutive days without rebound time. This is when I am likely to get the side-affects: nausea, hair loss, x-ray vision and the ability to leap tall nurses in a single bound. I can't wait to see thru stuff...

TRANSPLANT DAY -MINUS 1
This day I get a special chemical called CAMPATH. This is like a sweep up treatment. CAMPATH goes thru my blood and attaches itself to any remaining cells that remain from my immune system. Once they are attached they get taken out in my pee (ahhh, it's nice not to have to be so clinical).

TRANSPLANT DAY -ZERO!
I will have to get more of the details to write this one... Stay Tuned - Film @ 11.]

I want the last words for today to be from Robbi's Update for tonite:

I remember the day I heard David was diagnosed with this disease called Scleroderma. It became a wake up call and I didn’t think I was asleep. I thought that we could just educate ourselves about it, read everything there was to read, make the changes in our lives we needed to make, and just go with the flow from there. Never in my wildest dreams did I think we would be where we are now. I never imagined that I would be so humbled by such care of love. Never did I think I’d be sitting next to my husband while they drain the life out of him to turn around and give him a new life that could give him many more years with us.

I have no idea what is going to happen over the next 2 – 4 weeks, (thus the migraines) but what I do know is that the love and support I have felt from you all is the foundation I’m able to keep myself upright on. I’ve learned how imperative it is to be by your family/friends when they are paralyzed in fear. Where as before I may have thought it was best to mind my own business. I’ve learned to be unselfish and thoughtful, where as before my pride might speak before my heart. I’ve learned that it’s beautiful to be vulnerable; it’s when we are open to learn so much. Before I might even be ashamed of needing anything from anyone.

We all have our “stuff”. Our “stuff” can scare us into acting helpless or it can allow us to open ourselves to be helpful. Nothing is more important than to live in the moment we’re in and make the very best of that time.

On this night before we begin this intense procedure, I thank you again from the bottom of my heart. I feel your love and prayers and we take them with us tomorrow morning.

Love,
Robbi

DAY 16 - 011107

Robbi hasn't written an Update in 2 days. She is focused on Jayme, me and getting her own health back to normal. Some issues with our RX insurance, regarding the limits on her migraine meds. Why is it surprising to them that she may experience a greater incidence and intensity of headaches while she is fully involved as my caregiver through a life-threatening procedure?

We skipped yesterday because nothing much happened all day, until I went to get my lines checked in the late afternoon.

I am not one to attack the insurance industry. I have a clear sense of the business of health care. That does not mean that the rules can not be / should not be challenged. This is one such rule.

As the day progressed, my coughing increased. Now, this is not the cold. I think we beat that out of me. This cough is sclero-related. It's a dry non-productive cough that just gets more persistent. It takes a toll on my energy and really works hard on the abdominal muscles. By the time I got to the hospital, the nurse was concerned that the risk to my overall health could become too high if we didn't intervene. She ordered up some does of medicine, including cough meds w/ codeine. I have these meds already but had stopped taking them when the cold was under control. The lesson we learned - I have to use low-moderate med doses to stay atop of this cough so that I can conserve my strength. In a few days I am to be admitted for the BIG ONE and I need to be as strong as I can.

Once I got the meds, my cough dissipated over the next hour.

Last nite it was Applebee's take out and I ate the most for 1 sitting since coming to Maine. We settled in for: News, Wheel of Fortune, Jeopardy, and Everyone Loves Raymond. We watch these, not because we like any of them (although Jeopardy is a favorite). We watch them because they are "white noise". We all get to work the computers, read and knit without missing anything.

Then Jayme found The God-Father! He and I watched it. Robbi's cold is really settling in. She took some cold meds and went down for the count. She awoke several times and I saw her reading at 6am.

Today, was a very quiet day. Robbi and Jay went out for a while. I cleaned and sanitized the humidifier. Low appetite. Jayme and I have been busy playing with a gift from Cindy P. & Family (friends from Westborough). Texas-Hold'em electronic game. we won the tourney on the first try. It took us several hours... then we found it hard to get past the first couple of rounds.

I've been helping a couple of clients and my friend Skip has thus far jumped in to assist some that needed face-2-face care. Thanks to all of you, for continuing to trust me.

Tonite - we watch some more TV and hope to rest up. Robbi really needs a good nite sleep! It's 7pm now and we're all settling in.

Love to all - David

DAY 13 - 010907

Robbi's Update:
BORING!! Today was absolutely BORING!! That’s right, we did NOTHING!! We sat around and did NOTHING ALL DAY!! We are blessed!!! ~ Robbi

[Patient Update:Stem cell Harvest was successful. The cells are in Philly, PA at the Red Cross. Yesterdays events are captured in photos. Here are a few of our team members:



Dr. Ann & Nurse Cindy... and me. Yes I have the Bluetooth in my ear. HEY - I'm not on vacation here!

Jayme (The Son), Maura (The Trainer), and the rest of us.

While they play with machine, I'm working hard at Tetris!

Cindy driving the apheresis machine.

I’m holding the bag of my stem cells!!! It’s a feeling that is indescribable.

Robbi and I autographed the machine. We are honored to be the first at MaineGeneral – 1/8/2007.

This is the cooler that my stem cells were sent off in… on to Philly and a slow freeze.

Next on the agenda - - -
For the next 7 days, I visit the hospital every other day to get my lines flushed to be sure they are ready for the next big phase.

Looking ahead - - -

Next week (Monday?) I get admitted to the hospital for the high dose chemo that wipes out my immune system.

STAY TUNED... FILM @ 11.........................

DAY 13 - 010807

Robbi's Update:

Today my son puts it best:
---"We harvested Dad's stem cells today! It was a 5-hour procedure with an amazing machine that Mom and Dad signed afterwards because we're the first ones to use it at this hospital. It has a centrifuge. Mom took a picture of Dad holding the bag of stem cells before they tagged it and I thought: "Holy shit... there could be 50 more years in that bag."---

It was an amazing day. When we got back to the hotel we looked out the window to see a FULL rainbow. Jay and I ran outside to experience what felt like a hug. Today we are grateful on so many levels.
~ Robbi

[Geek Update:

Harvest #1 is in the bag. It's was so simple for me. I just laid there and let the blood flow. But you watch and listen to the operators and you learn how amazing the whole process is. One line syphons my blood into the machine, where it is centrifuged to separate it's components by density. The heaviest components of the blood sink to the bottom and the lighter stay on top. Imagine a stream flowing by and at the bottom is the heaviest stuff (like pebbles and slug)... the next layer is clearer but still mixed with stuff we don't want... then the top layer has the cleanest fluid - in this case - the stem cells. To capture them we need to draw them off the flowing stream as it passes. A tube is dipped into the passing stream to suck off the good stuff. Now as simple as this sounds it's even more intricate. The quality of the fluid drawn has to be assessed by the tinge of color that the fluid has. They literally use a color chart to match the fluid - if it is too much red then that means that the tube is drawing more of the sludge. If it is to pinkish, then they are not drawing enough of the stem cells. The tube is adjusted tiny amounts up/or down to keep it at the proper level.

Maura, the woman who came in to lead this process was awesome. Cindy and Terri, my nurses, operated the machine under Maura's guidance and mentoring. The entire 6 hours involved questions, challenges, what if scenarios, and was all about doing this process with intense caring and focus on results. As the patient, it doesn't get better than this.

As the procedure progressed, I experienced several typical side-affects. First, I had a mild tingling sensation in my lips. This is the result of a calcium depletion that occurs from a chemical that is introduced into my retuning blood (to stop clotting). To replenish calcium, i had to take 2 TUMS 2 hours before the procedure and again in the middle of it. The other affect is fatigue.

For nearly the entire 6 hours I laid back in a recliner and listened to the chatter. Robbi, Jayme, Maura, Cindy, Terri and the parade of interested parties that passed thru my area all day provided a mix of stories, education, and laughter - all of which served to stimulate, feed and calm my mind. When it was over, we went back to the hotel and as we settled in, we got a call that I had to return immediately! The harvest was fine, as far as we know, but there are additional blood samples that are required for the Red Cross to process and store my stem cells. The actual results of the harvest will be measured and reported later today. Once I gave the additional tubes of blood - everything was on the way!]

[Patient Update:
Feeling good today (Tuesday). My weight is down to 167.5 lb. Blood pressure and temp are running good. Thus far, my appetite is diminished but still there. Last nite I eat more than I had in weeks.

Yesterday was an amazing experience. Most notable was that Jayme, who has been living on the outside edge of my treatments is now a player. His awareness and intelligence are incredible. His sensitivity and compassion is beautiful to behold. These are the reasons why I declare that he, and his sister, are the 2 most beautiful people I've ever met. As unique as they are, individually, they are identical at their core. They are the best medicine.

Send me your questions - I'm sure I left out some details.

David]