HEALING - DAY 23 - 022507

Yesterday I thought I had an accomplishment worthy of a posting, all to itself... but then, today happened.

Not only had I begun a series of exercises, so that I can begin to strengthen my arms; but I walked the length of our road TWICE! The second lap was tougher to complete but I made it, and kept the pace at a steady and regular pace.

THEN TODAY... which began like most days. Up at 7:00. Pills, cereal, OJ, iced coffee and a book until about 9:00.
When I got out of bed, I felt really good. This, too is common these days. I haven't done much, so why wouldn't I feel good.
When I got ready to pick up the weights, I got a charge of motivation and performed a series of exercises that I had learned several years ago at my local physical therapy clinic, (shout out to South County PT!). After I finished a challenging and rewarding set of reps, I set up a form on which I will keep track of my daily performance. That was cool, but not the complete story...

Then I went for a walk. When I reached the end of our road... I turned right and continued... The route that I took is equal to about 2 1/2 times my previous longest walk - which means that I walked about 1/2 MILE!!! I did this at a steady pace and arrived home without any severe side affects. I wasn't coughing and didn't need to plop my butt into the nearest chair.

And then... I walked again... and further still! This time I continued to walk throughout my neighborhood. I can only estimate the distance (as my car battery died for the 2nd time in 2 weeks time). I believe the distance to be at least 1 mile!!! I haven't walk a distance that even comes close to this, since about 6-9 months ago.

Although I am quite happy with this achievement, it must be qualified on several points. As my condition worsened, last year, I wasn't motivated to push my limits. On the contrary, as my breathing became more restricted my focus became the conservation of my limited resources. Exercise would only wear me out and the benefits were null. So, could I have walked a mile or more? Probably.
Then what is different now? What is my risk and what are the potential gains?

The Difference?
All we know just now is that my body is healing from the affects of the chemo-therapy treatments. It is probable that that treatment may have positive affects, such as slowing, or even reversal of some symptoms. (It is not expected that scarring in the lungs (fibrosis) will be reversed.) The symptoms that have been reported as reversible are ones that (if it is so for me too) would have affect on the quality of my life - including the softening of skin, which may allow me to breathe easier. This may explain my steadily increasing tolerance for exercise.

The Risk/Gains?
I've been given an opportunity. My family, friends, and (an ever widening) community have given of themselves in ways that awe me. I am inspired to take risks. I will not conserve my resources now. I awaken every day with the intent to DO SOMETHING, and keep doing SOMTHING. Walking as far as I can... reaching a little further for an object that fell on the floor... taking on more chores and family related tasks...

There are no limits anymore.
Any point at which I stop doing something, is the point at which I begin to do something else.

HEALING - DAY 21 - 022307

My mother would be so proud of me yesterday. No, I didn't graduate Dental School. (She always wanted me to be a dentist!) I changed the sheets on my bed. Mom didn't make a lot of demands of me (just ask my sisters) and still, when I would complete the simplest of tasks, she would be so happy.
Changing the bedding, now, is a task that I haven't been able to complete, by myself, in several months - perhaps since October - without taking frequent time-outs. This time, I had stripped the bedding, put them thru the wash and dryer - all the while performing other household chores - and then remade the bed. All that with minimal breaks.

Yesterday, I also found out the U.S. Postal Service (aka - Drill Sargent Academy) has signed on to coach my rehabilitation program. When I got to the mailbox, I saw that they had - WITHOUT ANY PREVIOUS WARNING! - delivered a bulky box, along with the normal compliment of letters!!! This challenged me to use both hands, to hold the mail and parcel, while I walked all the way back to the house. Then when I reached the house I had to shift the load to free up a hand and open the door - and THEN climb 3 steps to enter the house!!!!!!! Is anyone else as amazed as I am that I was able to achieve this impromptu training exercise?

My daily schedule still involves waking up about 6am - make my iced coffee, take my meds, and fix a light breakfast (usually cereal and toast). I listen to Howard Stern, while I read some books (I'm reading 2 different books), check email, and plan my day. I get out of bed about 9-10. Yesterday, I showered, and started chores right away. Lately, I've been working on a new computer I bought for my business (I have to train myself on Windows Vista operating system). Then, by mid afternoon, I sit down with a full lunch (and meds) and watch the History Channel.
After lunch, it's back to work. Most days I have issue to work on that come to us via the mail - "Why were we charged a service charge?" "Reschedule an appointment", "Research the cost of a new insurance coverage option." This carries me thru to dinner and the News programs... then Robbi and I settle in and watch the evening shows... Sometime between 7:30 - 9:00 I begin to crash. Last week and before, I was crashing much earlier. It does depend on how much activity I've had during the day. Last nite I was able to watch "Grey's Anatomy" with Emy (her favorite show) and Robbi, although I napped during the commercials.

Speaking of naps - the greatest invention in the world of leisure!!! Irecommend that everyone take a nap for at least 1 hour a day - usually after lunch. Even if you don't actually sleep, it is incredibly rewarding to slip away from tasks and urgencies to "hide in your own stillness. It is similar to meditation, which is what some people do instead of napping. I suggest that either process is cool. Get away from the schedule of tasks and be within yourself for at least an hour, and you will feel renewed and recharged... for a while. The length of time that you feel better will vary, depending on how long it is before you allow the urgencies to overwhelm your thinking again. That is a variable that we all control, even when it feels like it has a life of it's own.

Enough of the "Davidisms" (my aattempts at sounding wise)...

Here is a shout-out to Devona: she has the dates for treatment to begin in Chicago > March 27th! Thanks to those of you who have donated additionally to her fundraising. She has also received the commitment of travel expenses (for both her, and her caregiver) from a couple of individuals in her business community.
Least the wrong impression be given - Devona is still in need of our support, to address the expenses for the hotel, and follow up treatments (just like me).

By The Way - Devona has been selected for the Stem Cell Transplant side of the trial!!!

Stay tuned.... film at 11.........

HEALING - DAY 19 - 022107

Walking... walking... and an occasional walk up the stairs. Today, when I walked with Robbi, I kept pace with her. This is the gain for today! Previously, my pace has been slower and she had to keep backing off to let me catch up.
Why is today different from all other days? Because today I just kept walking and didn't worry about the little things, like "only 2 driveways left before I'm able to sit down." it's really cool to be feel better every day.

That said, we all have to remember that "better" means that I getting back to where I was before the procedure.

Thinking of Arden, who is at Johns Hopkins for an assessment.
Devona... Dominic... Wendy... Nancy... Jane... all of whom are moving into treatment or through healing.

Remembering my care team in Waterville, ME... you are all in my thoughts all the time.

HEALING - DAY 18 - 022007

I've been hearing from many of you - that I need to keep posting messages so that ya'll know that I'm still up and kicking. To all of you in western Washington - HEY! Thanks for asking about me!!!

The process is very slow... hence, my writing every couple of days. It's like watching a wound scab-over. As a matter of fact, with scleroderma, that's often a very lengthy process. I have a cut on a finger that hasn't healed completely in more than 6 months. These days I have to watch it to be sure that it doesn't open and get infected. Hand washing and antibacterial creme are constant activities.

Saturday I drove my car, for the first time in more than a month! The last time was with Jayme - on that day when we snuck into town from ME. It's a liberating feeling to drive. I went real slow, which created a mini traffic slow down and pissed off 10-20 people. Friends and family are surprised to hear that I'm driving. Think about it - all I'm doing is sitting and moving my foot on the pedals and my hands on the wheel. It's less physical that doing a load of laundry... OH, by the way, I've been doing the laundry this week too.

I've been walking out to the mailbox. Today I actually brought a letter with me and raised the flag!

I will make a strong effort to do these updates more consistently.

Good nite............... David

HEALING - DAY 12 - 021407

First of all - You are ALL MY VALENTINES!

And Robbi is MY #1
==========================

Everyday I experience little gains and then there is a new ache, or I am not able to breathe quite as easily as the day before...
With scleroderma, we learn that, what ever our abilities and/or limitations, we find a way to cope and work with this new limit. Then it becomes THE thing that we can do. It's not that we can't reach as far, or walk as long - it now becomes "This is as far as I'm going to go, so I can enjoy this journey.... so I can complete this task."

For this reason, many of us don't measure how we feel on a day to day basis. When my family and friends ask "How are you today?" I often answer, "I'm good... and I still have scleroderma." Often they laugh uncomfortably. Perhaps I've set them up for a bad joke. However, just like they can't know what I go through, and can't be faulted for their 'not knowing'; neither will I accept accountability for their feelings - whether embarrassed or not. It is what it is.

One difference I've noted over the 14 days since being in HEALING is that my tolerance for activity is on the upswing. Somedays it doesn't feel that way, but each of the last 4 days I've been walking with Robbi. We've increased the distance from a) the end of our driveway and back to b) the next door neighbor's driveway to c) the next driveway after that! Each increase in distance increased the totals by about 4-times. Then yesterday we walked all the way down to the end of our road - about 1/10 of a mile. On the way to the mailbox, at the end of the road, several neighbors drove in and stopped to talk. Not only didn't I talk (to save breaths) but I kept walking and left Robbi to speak for both of us. When I got the main road I STAMP MY FOOT DOWN HARD ON IT! This was a benchmark that I had set, without a specific timeline. Personally, I don't feel the need to set arbitrary dates, to meet challenges that will be forever increasing throughout my life. I look ahead, and as I approach what was once a horizon, I can already see a newer one.
I don't know who said it, except that my first boss used to quote it all the time: "Life is a progress, not a station."

So not only did I walk that distance but for the first ime, I didn't grasp and gasp for a chair when I arrived home. That was as wonderful a feeling as I've had. I was able to move around slowly and feel my heart rate come down to normal... just like a real person!

Oh, I forgot to mention - yesterday I stood up to take my shower >>> for the first time in more than 2 months. THAT was cool.

Today, the weather is "wintry in New England". Although it cold and windy, I'm planning to take a walk. I can be very careful, seeing that my pace is very slow and my steps are about 1 foot long. I'll just have to wrap up my face as the air is really hard on the lungs. Even the cat couldn't stand it today - although he's not so smart... he asked to go out and then scratched to come back in.... then a half hour later did the same thing! Now he's sleeping in some distant corner of the upstairs rooms... probably thinking that May might be a good time to go outside again.

EYEWITNESS ACCOUNT - JANE ( My Mentor)

Jane, as most of you know was key to my being able to receive this treatment. She has been my mentor, not just through that process; but now, as she and I assist others along a similar path.

The story that we are building includes all of you who have supported me (and others) with love, money, actions, and ideas... it is a living process - without end.
=====================================
Here is Jane's eyewitness account:
=====================================

Dear David:

For me, as mentor, the whole thing was as thrilling as it gets. People ski, scuba dive, I mentor. Being able to witness the transplant, and knowing exactly what you went through, was the most fulfilling experience I have ever had. I watched you get your life back. I know how you felt after day one. I know how you feel after week three. I know that each day you are getting stronger. Each day brings with it a certain amount of fear, but I also know that all of a sudden, you will find yourself doing something you were not able to do as recently as last December, and you will know healing has happened.
When it happened to me, I found myself on the second floor of our home, with know idea how I got there. I went up the steps at the normal human pace. I was breathing slightly heavily, but nothing like before the transplant. And, I was not wearing any oxygen.
It was an astounding discovery.
That was in November, 2005. In December, I made Christmas cookies. To be honest, I have not made them in 15 years. I made Christmas dinner for 15 people , including the largest Buche de Noel you have ever seen. I was exhausted, but very happy. I recovered very quickly. I have not looked back.
I know it will be the same for you. The best part of this for me? I now have someone to talk with who knows exactly what I am talking about!

Jane

I Will Ask... And You Can Say Yes or No

This is one of those times when I have to step out of the safe zone.

You've been reading my story, and it's safe for all of us. I tell my story... you cheer me on... and we wait for the stem cells to work (or not)... Now I have to ask for your help.
Don't run away - I ask - You answer. Whether the answer is "yes" or "no", we both know that we are being honest.

Well, I know someone who is waiting for her chance to get the same procedure as I received. (As a matter of fact, I know of 5 or 6 people who are going through various stages, as they are trying to get a doctor and the finances aligned, so that they may have the same opportunity that I have.)

The person that I speak of now is Devona. You can read about her, and make a donation toward her stem cell transplant by clicking on the link, in the right column ("Please Help My Friend Devona").
Devona is in her early 30's. She and her life partner are raising a 13 year old boy.

There is much more of her story at this site: http://whatiamlivingfor.spaces.live.com/.

At this time, she is awaiting the scheduling of treatment at Northwestern University, in Chicago. She will participate in a trial that is very similar to the one I received.
Devona's fundraising has raised about 1/10th of what will be needed to get her through the treatment and followup recovery periods. Her father has committed a substantial amount - using his personal retirement funds - to guarantee that the procedure will be paid for.
I don't know what we may accomplish that can ease their burden - but I feel that I have an opportunity to communicate to you and you may want to seize the opportunity to help her.

Now I have to lay down, before I fall down.............................

HEALING - DAY 7 - 020907

I am eating. My appetite is great... On top of 3 regular meals (more detail to follow) I drink 2 Ensure Plus every day. Each of those is 360 calories.

A special group of volunteers have taken on the task of preparing meals for Robbi and I. This is one of those "Angel" acts. Not only does this ensure that we eat complete nutritious meals regularly, but just as importantly - a great burden is lifted from Robbi! Aside from taking care of our home, our lives, AND ME - at least she doesn't need to plan for... shop for... prepare... cook... serve... and clean up from 2 meals every day.

OH YA - and before any of these people are allowed to cook for me, they have to undergo a mini-training session. There are many restrictions and requirements that must be adhered to, else my health/life is endangered. Based on the fact that I keep getting up and want to eat each day, I suspect that they are doing just fine on the lesson end. It's even better than that! These people know how to COOK!!!

GAME BALLS:

Karen (cook & trainer)
Alisa
Stacey
Marsha
Cindy

I've only gained 2 pounds so far. As far as I can determine, my body's metabolism is running at peak right now to handle all that is going on. I have to eat massive amounts just to maintain... That explains why I am so exhausted by 8pm every nite.

It's bed time now.............. zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

EYEWITNESS ACCOUNT - ILENE

For all you skeptics who think I was lying on a beach in Hawaii, or awaiting the opening of Spring Training in Florida (more likely), here is the first eyewitness account from Waterville, Maine.
OK, so it is written by my big sister Ilene; but anyone who knows her can vouch for this - she can't lie - even if she were reading a script in a play, and it was her character's role!!! Asking her to "tell the truth" has the same affect as truth serum. And you don't even have to ask politely.

Ilene came to see me during my last week of hospitalization, and a couple of days back at the hotel. This and excerpt from her email to friends and family, sent when she returned to Maryland:

"First, David has survived the most dangerous part of this process, and
he was checked out of the hospital yesterday ­ weeks sooner than we¹d expected!"

"I'm back from ME. I was there for 5 days and witnessed a wonderful
turnaround for David. Last Wednesday, Robbi called to tell me that
David was having a very bad time. It turns out that he'd been taken
off one of his regular meds and, on top of everything else his body
was going through, he was experiencing some symptoms of withdrawal (particularly, agitation).
He didn't want anyone around (including nurses, doctors, and Robbi).
She warned me that I might not be able to visit with him when I
arrived on Friday. There was no doubt that I had to be there, but I
was prepared to wait at the hotel until David wanted company."

"After flight delays, I finally arrived in Waterville (about 20 minutes
north of Augusta) at 5:30 p.m. David was feeling much better by
Friday evening and wanted me to come to his room. I had to shower and change my clothes at
the hotel before going to the hospital. I couldn't touch him; so, we
exchanged virtual hugs and "air kisses". It was great to be there.
On Saturday, David welcomed our nephew, Matthew, and his wife, Devin,
and on Monday, he enjoyed a visit from my daughter, Joyce, our friend,
Jenny, and my grandsons, Jen & Kels. Proper precautions were taken,
of course ­ cleansed hands, masks, and gowns ­ to protect David from contact with germs.
It¹s really amazing how these visits from loved ones brought so much
positive, healing energy into the room."

I'd love to read and post other interpretations of my treatment and recovery. Come on and get them in to me while they are fresh in your mind.
Send them to: DesktopDavid@gmail.com

PHOTO GALLERY

During the last days in Maine there were important events and visits that need to be noted, along with how I was feeling at those moments:

My niece came to visit and brought her sons to see me. It has been an important issue to me that children can and should be apart of all life experiences - joyful and sad alike. Jen and Kels are fortunate that all of the parenting adults, in their life share this idea. So, they were brought to see me, in the unusual and intimidating environment of my hospital room. Jen (blue sweatshirt) and Kels are highly intelligent and inquisitive interviewers. This is how they learn! And boy do they absorb information!
They asked questions about the room, my hair, the medications that were being administered by the IV tree, and the masks that they were required to wear. Note that Kels had an issue with wearing the mask. He was able to hold it on his face and maintain the safety factor. Kels also asked the best question of all: "How will we know if/when the stem cell transplant worked?" I answered him the same way that my doctors answered this to me. Both boys understood.

My sister Ilene is their "Bubbie" (Yiddish word for Grandmother).

Prior to the boys arrival, I was feeling very unsure of accepting any visitors. These days were uneasy for me as I was at Nadir and also coming through the A-Fib event. I was weak of body and mind.

It was a major motivation for me to be able to talk with the boys. Just like my nephew Max, I feel an obligation to share my experiences so that they will be apart of our family's total lives, not just "seen and unheard". Their questions are born of their observations... and it is beautiful to see and hear them process ideas, ask for clarification, and share their summarized conclusion.
Later on, I prepared to leave my "capsule" for a walk. Heather, who had been present through many phases of my recovery was there to help me with this major task.

(This was my second time walking out into the hall. There aren't any pics of the first venture.)
By the time we had arranged for this walk, I was already tired and knew I didn't have long to go before I would have to crawl back into bed. At this phase of the recovery, I spent about 98% of all day in bed. I got up to go to the bathroom, and I could get up for a few minutes to get an item or move something in the room.

This me standing outside the room, which is to the right side of the pic (my left). Behind me is a roof patio that I look out at from my bed all day. In the nice weather patients are encouraged to stroll into the fresh air. Of course today it is snow covered and about 10 degrees out there. I'm thrilled to walk up the slight incline that leads to the door - this is a major triumph!!! I am already running low on stamina, and anxious to move on... I'm trying not to go right back to bed.
Jody was at the 3-North Nurse's Station (my Mission Control). Was she smiling for Robbi, the photographer, or was she that happy to see me up and walking? I think it is the latter.

My common pose, with Ilene. I didn't realize I stood like this. I'm sure that it shows my insecure feelings. I am certainly uneasy at this time. Immediately after this is taken, I turned and made it back to the room - which is 30 feet behind me. The door that you see directly behind is that patio door.

Oh! The elevator door on the right is the one that I used for the "Star Trek" scene (visit to the xray lab).

We are standing in front of the Nurse's Station.

On Discharge Day!

Debbie (The Boss) presented me with a "Life Is Good" t-shirt, that is signed by all of the hospital staff that was involved in my treatment. (actually - she had to hold on to the shirt to get some signatures of people who weren't yet available)

The hat I'm wearing has the Hebrew word for LIFE on it.

This hat was given to me by my father-in-law (Don) when I was recovering from my heart attack, in Dec. 1997. Don died in Jan. 1999, of pancreatic cancer. (He is remembered in all of our life events - before and after his death.)

When I was being wheel-chaired out of the hospital, I asked Debbie to stop... Ya, I cried. Now, sooooooo many people keep assuming that I must have mixed emotions about leaving my cocoon. It has been the safe harbour for so long that it natural to feel unsure when leaving it... nope. Not a shred of anxiety... not one whimper of "I'll miss you"...

It's more like "BYE BYE!!!!!!" "Thanks for the memories - and now I'm going to create a new life without you!"

I can't speak for anyone else, but I don't get the thought process that is being imposed on me or others. Perhaps you may (or have) felt that way, and that's cool, because you are YOU. In my world, (greatly influenced by Robbi, Emily and Jayme) we have a view of life's events that is summarized in this phrase: "Feel it and move." Some events may cause to pause for a moment of reflection, some (like remembering loved ones gone) are reflected upon repeatedly (both planned for and randomly).

Leaving this room was a great moment of passage that I will remember always with fondness and triumph. And now we move forward.

Back in the hotel for the couple of days, Robbi poses in a rare moment on the lens side of the camera.

Yes, she is making fun of my fuzzy baldness. I have shaved off the scraggly remnants of my beard. I'm told that when hair returns, it can actually come back in a different texture and color.
Before anyone asks - NO - Robbi is not drinking a Jack Daniels on the rocks!... She is holding mine (just kidding again).

These days, Ilene is laughing a lot now - she's just happy that her baby brother is still alive. Ilene found out that phone conversations, emails, and blog messages just don't quite get the point across. When she arrived, I was heading into the hardest point of recovery. She watched me, along with Robbi, after I had hit the bottom and began to climb up slowly. She wasn't here for Nadir (a few days before she arrived).

Nothing can prepare us for seeing a loved one look like "something the dog dragged out, and the cat dragged back in again."
On the day before we left Maine, I had an appointment with Dr. Ann.

Another rare moment for Robbi, in front of the camera - NOTE: She and Ann are holding hands behind me! This is not a small moment, for they have a very strong bond between them. It is more than me. They are truly connected in how they view our world, the process of healing. I am most fortunate to have them as my primary caregiver/health care provider.
The note book holds every test result and vital sign throughout my hospital stay.
On the day that we were leaving Maine, I had to come back to the hospital to have my chest lines removed. There was very little discomfort during the procedure. The local area numbing process hurt more than anything else. I was totally awake and aware during it. It took about 15 minutes to disconnect and pull the line from my chest... amazing stuff.

Debbie had met us in the area where this was done, and when we were preparing to leave we got a call from Dr. Ann's office - "please come down to her, she wants to recheck me before I leave."

See, yesterday, my heart rate was elevated and she had been wondering why... all other vitals were perfect, especially my Oxygen absorbing levels.

Then she realized that I wasn't hydrating properly... I have to drink a minimum of 2 liters of fluid a day... and she was correct that I was low on the intake over the last day or so. Since then I am drinking 3+ liters a day (lots of trips to the boy's room).

Then, we left to begin the journey home... This is the door that Robbi entered and exited every day during my treatment.
We had to return to Hampton Inn, to finish packing the car. It is amazing that when you live some place for a month and 1/2, you accumulate a lot of STUFF!

It barely fit into the car... I won the toss of the coin and got to ride in the front seat while the leftover food stuff stayed behind. WHEW! I wasn't looking forward to staying in Maine. I hope the hotel staff likes Oreos, soups and tortilla chips.

The ride home wasn't too eventful. I was uncomfortable because of aches in my bone marrow. It seems that I was still over producing blood cells and the pressure in the bones is very achy. I had a script that helped me be a lot less cranky.... and wimpy - Robbi doesn't tolerate wimpy.

I've already described the arrival into Westborough, so the coming postings will focus on healing...

HEALING - DAY 3 - 020507

There have been so many instances and sub-plots that I haven't written about... I will try to fill in as we move forward.
Healing requires that we keep looking forward.
When I remember the connection to a previous instance, I'll flashback.

Being back in Westborough is a jumble of emotions: When we drove into town on Friday, I felt like George Baily, in "It's A Wonderful Life"; I wanted to roll down the window and scream "I LOVE YOU, MACDONALDS & FRIENDLYS", "HELLO YOU CRAZY WESTBOROUGH SAVINGS", "I'LL SEE YOU SOON, CVS!"
Robbi and I laughed at these cliché rants because we truly felt the sentimentality. We are home. That said, the conflicting sense was that we are in a strange place, and we are unsure of what is to happen next. Robbi drove on auto-pilot, while the surroundings weren't really familiar.
The one thing I wanted to do (but didn't) was to "DO THE ROTARY". The Rotary is the traffic circle (aka a round-a-bout), in downtown Westborough. The high school tradition is to return from a victorious football game, and the bus drivers continue around the Rotary multiple times while beeping the horns. It's an acceptable public nuisance. My variation was to hang my butt out the window while Robbi beeps the horn... an idea that was best left in my mind... which it was.

Before I discuss my physical condition, I must once again explain the difference between Treatment and Healing/Recovery - and the definition/prospects for Success:

TREATMENT: The whole period from when we arrived in ME (122606) until we left ME (020207). During this time I was prepped for and received my stem cell transplant. My Scleroderma symptoms are affected by some of this treatment, specifically, the chemo. Cytoxan is a chemo that I've received before and is known to have some affect on symptoms. Most likely is that the skin can be softened. This is neither a cure, nor a long term relief. As a matter of fact, my previous Cytoxan experience, I had none of these benefits. The stem cell transplant is part of the Treatment. IF there are any benefits to be realized, they will be seen during the Healing period - which continues for the rest of my life.

HEALING: There are 2 phases to Healing -

1) RECOVERY - from the Treatment: The beating that my body took from the chemo is severe. The risks of various cancers are greatly increased. Although they pumped me with other chemicals to minimize these risks - my chances of developing cancer is much much MUCH greater than most of you. The fact that I would take on THIS risk, might bring home the risk of death from Scleroderma. It was a no-brainer.

2) HEALING - from the Treatment: PLEASE NOTE----- Healing DOES NOT EQUAL CURE!!!
Of the approximately 36 people that have received stem cell transplants:
>>> 5 DIED FROM SCLERODERMA PROGRESSION, WITHIN 2 YEARS OF TREATMENT. Depending on the degree of their disease, they were likely to die within that period of time, even if they didn't have the treatment - same as my prognosis.
DO YOU GET IT?
There is a 14% chance that this treatment will have ZERO affect on my life expectancy of 2 -3 years.
>>> 31 have had some stabilization or regression of symptoms. Stabilization = neither worsening nor improvement... this may be considered an extension of their lives. Stabilization is looked at as a Success. Of course regression of symptoms is the most desired result. Measuring regression is difficult. Some symptoms may fluctuate in their degree, naturally. (Some people have had skin softening WITHOUT ANY TREATMENT!) Symptoms often increase/decrease as the disease progresses. Some symptoms are masked by the medications we take.

3) SUCCESS: Defining Success is an individual, subjective measurement. For me, the measures include the impact this whole process has had on my health, family, community, and what (if any) affects may be realized by others, as a result of my experience. Each of these factor groups weighs equally in the final measure.
I DECLARE THIS PROCESS TO BE SUCCESSFUL!

===========================
Now, you'll have to keep coming back to read the details, to find out WHY, (although many of you have some idea, I'm sure).
===========================

Before I sign off:
Some GAME BALLS & Thanks

Alisa & Karen - YUMMY!!!!!!!!!!!!
Lew & Family (a call and a card)
Cindy P. (prescription filled - brownies)
Nancy & Scott - ("neither rain or snow, nor gloom of night...")
Gordon & Karen (mental health is the foundation for physical health - and you are providers of both)
Sammy (a purr is as good as a hug)
Emily Sam (your wisdom grounds me)
Jayme - (talking... keep me talking...)
Steve - (a last second call... the vac is great!)
Steve - (my office is prepped & up and running!)
Skip - (my business continues to thrive!)
Donna & Rick - (We love the Pats - because of HOW THEY WIN, not whether they win or not!)
Josef & Anne - (I WILL FILL THAT Piggy Bank!)

A FOND FAREWELL TO 3-NORTH

The intensity of the whole process which requires that you give your trust to the people who treat your mind as well as your body, causes me to reflect and recount the names of these wonderful people:

GAME BALLS TO:

Debbie
Tania (Care Coordinator)

Secretaries:
Noella
Ashley
Cheryl

Nurses Aides:
Misty
Kristina
Katie

Nurses:
Heather
Brenda
Amy
Sharon
Angie
Nancy
Kristi
Jody
Heather
Monica
Sue
Gwen
Stephanie
Stacy
Laura
Ginger
Kim
Kathie
David
Stephanie
Helen

Cindy
Terrie ( helped with harvest)

Arlene,David and Martha (donated the exercise bike)

Dan (IT)
Dirk (Engineering)

I hope to see you all, in May, when I return for my next Check-up.

TRANSITION DAY - From Treatment >>> Healing

Today I transitioned from "Patient in Treatment" to being the person managing my own healing. I'm now just like all of you.

I live in my own home...
I have to leave my bed to get my blood tests...
The food I eat has never been de-taste-ified...
My doctor calls me, rather than showing up next my bed at 7:30am...
Nobody is adding up my fluid In/Out ratio!!!!!!!!!

I write this posting, sitting in our family room in WESTBOROUGH!

The last 4 days have a whirlwind of emotions and events.
AS I sort it out I will continue to summarize the past, report the present and plan the future.

Sweet Dreams for all of us.

David

DAY 39 - 020107

FABULOUS FEBRUARY!
And that it is! I turned the calendar to February and it flips me out that it’s a new month. In the beginning of January I was overwhelmed looking at the month ahead and I couldn’t imagine making it through each day. February seemed a year away. I marked off every day after coming back from hospital and I thought, “Wow, we made it through another day”. I learned more about life in this past 6 weeks than any other time in my life. I think I’ve aged about 12 years too but it’s all good.

We met with Dr. Ann and David’s numbers are excellent. Tomorrow morning they will remove the line in his chest and then we’ll prepare to COME HOME!!!

To everyone here in ME - Thank you from the depths of our souls.
We are so grateful and filled with love for you all. We will miss seeing your smiling faces every day. I can’t say more than that for now because I’m all facklemped with each word I type. Just know that we are friends for life!

I’ll sign off so I can begin the packing process and I’ll be in touch with you all when we get home.
.......Too teary to continue. Love you all very much.

Robbi

THIS IS BIGGER THAN ANY ONE OF US

OK, I am falling behind, because things are moving faster than I can type.... (which is about 5 WPM). So, This is a great time for all of us to fill in the gap:

My story is, just that. I can only relate all the events from my perspective.

I invite all of you to color in the areas that I can't see. Tell me what you have seen, if you have involved in any way.

Nurses, friends, casual visitors to this blog. If you have any piece of the puzzle PLEASE SUBMIT IT TO ME!

DesktopDavid@gmail.com

If you choose to remain anonomous, that's cool. I will only show first names.

Let the games begin................

Thank You: Jan & Tom

Jan is a dear friend that Robbi met (via a "Sclero" message board), and continues to stay in touch with.

In our journey to understand Scleroderma, Jan communicated with Robbi, on a daily basis, as her husband, was receiving stem cell treatment - 2 years ago. Tom did not survive the treatment phase. He received the early version of the SCOTS Trial (including full body irradiation). At the time he and Jan were able to find a medical team that was capable and willing to treat him, his disease was much further progressed than mine. Tom, knowing that his chances for survival were negligible, was motivated to live. He knew, too, that others would benefit from his experience in the treatment.

Today, Jan continues to provide guidance and information for many support groups from the experience of her husbands treatment. Tom was a courageous and loving husband whose memory inspires many of us to move forward with stem cell transplants & research.

I am honored by Jan's friendship, and grateful to Tom for his love of Jan, which enabled him to lead and teach many of us to follow...

David