General03 Mar 2009 09:10 am

I never asked you to visit. ..at least I don’t believe I did
Maybe…I don’t know
It’s so confusing
At any rate, you’re a rude guest
You take my energy,
Rob my sleep, and with a stick
You swirl and distort my dreams

All right; You are here…for now
But understand
There are two places
That are forever off limits

You may not tread on my spirit You may not occupy my soul

I have heard of your visits to others
I know the damage you leave in your path
The wanton disregard for innocence, value and what some would call fairness

Also, I hear that laughter confuses you; that good foods make you feel bad, and
That nothing causes you more distress than an autumn sunset,
The forever blue of a summer sky,
Or the unconditional radiance of a child’s smile

Listen and understand
You might pilfer my closets, empty all the drawers, and trash my house
But there are two places forever off limits

You may not tread on my spirit You may not occupy my soul

Do not mistake my nausea, weakness, and pain as signs of your victory
They are simply small dents in the armor I wear to fight you
Instead, look deeply into my eyes

They will once again remind you that there are two places forever off limits

You must not…
May not…
Will not tread on my spirit

You must not…
May not…
Will not occupy my soul

Unknown


General31 Jul 2007 07:23 pm

This is a phrase we all hear when dealing with cancer. For me, I said it to myself every night when I was going through chemo, dealing with an ostomy, and preparing for my MOAS. Every night, I couldn’t wait until it was time to go to sleep so I could forget about everything, even if were for 7 or 8 hours.

Now that there is a chance I might have a recurrence, that phrase pops into my mind occasionally, especially at night. Throughout the day I can occupy my mind with work, riding my bike, etc., and at night I remind myself that I made through one more day. For the next few hours, I can forget about cancer, surgeries, chemo and all the other sucky things that come with having cancer.

For anyone dealing with a possible life threatening disease, you learn two important things.

1) No one is guaranteed tomorrow, so live life to the fullest, to the best of your ability.

2) And when things get tough, you only have to worry about living life, one day at a time.

Kevin

General24 Jul 2007 05:22 pm

The Median Isn’t the Message

by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain’s famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before - lies, damned lies, and statistics.  Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics recognizes different measures of an “average,” or central tendency. The mean is our usual concept of an overall average - add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, “The mean income of our citizens is $15,000 per year.” The leader of the opposition might retort, “But half our citizens make less than $10,000 per year.” Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more “real” and the only proper basis for action - if it feels good, do it - while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, “Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death.”

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: “What is the best technical literature about mesothelioma?” She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard’s Countway medical library and punched mesothelioma into the computer’s bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that’s why they didn’t give me anything to read. Then my mind started to work again, thank goodness.

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied. Fortunately (since one can’t reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge - and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon’s proverb.

The problem may be briefly stated: What does “median mortality of eight months” signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as “I will probably be dead in eight months” - the very conclusion that must be avoided, since it isn’t so, and since attitude matters so much.

I was not, of course, overjoyed, but I didn’t read the statement in this vernacular way either. My technical training enjoined a different perspective on “eight months median mortality.” The point is a subtle one, but profound - for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous “beginning of life” or “definition of death,” although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard “realities,” and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the “I will probably be dead in eight months” may pass as a reasonable interpretation.

But all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently - and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call “right skewed.” (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn’t much room for the distribution’s lower (or left) half - it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran - for I had already concluded that my favorable profile made me a good candidate for that part of the curve.

The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances - substantial time. I didn’t have to stop and immediately follow Isaiah’s injunction to Hezekiah - set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

One final point about statistical distributions. They apply only to a prescribed set of circumstances - in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.

It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die - and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy - and I find nothing reproachable in those who rage mightily against the dying of the light.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn’t expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain’s most famous line of all: the reports of my death are greatly exaggerated.

 

Stephen Jay Gould was an evolutionary biologist, and a Harvard University professor. He was also an author of books about science and evolution. Stephen was a 20 year survivor of mesothelioma.

General23 Mar 2007 11:24 am

On October 5, 2006, Bob and Becky Bowden stood at the foot of my
hospital bed, the night before my MOAS surgery, probably not fully
comprehending how much inspiration and incredible morale boosting
they were to me, just seeing a survivor of the ordeal I was about to
experience.

Since I had some complications afterward, I really thought life would
never be good again, and had a hard time with ‘cabin fever’ and
depression while in the hospital.

Since my mate deserted me during my battle, I have been busy with
setting up a place to live and work, so I haven’t been on this list
in quite awhile. I have officially gone back to full time work now,
and this was my first real normal day since before my MOAS surgery.

I am sharing my journal entry for today with you all, hoping that it
will encourage you to believe that everything will work out for you,
and that you will get well:

I promise you that I’m not looking for atta boys or congratulations
or praise when I tell you about my feelings today.

I cannot forget my hopelessness, pain, nausea and misery during my
horrible cancer ordeal. It’s still fresh on my mind.

And because of that, my day was so incredible that I want to spend
the night on my knees praying.

I am so grateful that I am crying as I write this. It’s meant for my
journal, but I thought I’d share it with you all.

My first real day back at work, just like I used to do. Lying in
that hospital, I thought it would never happen again. It felt so
surreal.

This morning I cooked breakfast for my brother (bacon, eggs, coffee)
and realized, once again, that after not being able to eat for almost
three months, food tastes incredibly good to me now. Then he went to
put up a gate and work on fences and I caught “Huckleberry” (the new
gold cream champagne stud colt) to give him his halter lessons.
While I was running my hands up and down his legs, picking up his
feet, feeling the breeze underneath the big oak tree we were standing
under, I realized that I have won life’s lottery. I am doing what I
love for a living. Gosh, I think I must be intoxicated by this
incredible weather!

After I turned the mare and colt out, I went to saddle up my first
horse, first working day in 9 months! (I had prior surgery in
July.) I rode Tux first, and quickly realized that I completely blew
the money I paid the young guy to train him while I was recovering.
He is almost emaciated and totally ignorant of the bit. Still, I put
that out of my mind and enjoyed the ride. I couldn’t ride him too
long — he’s too weak, but I felt it was important to ride him a
little to encourage his appetite.

Then I saddled the beautiful jet black Royal Master gelding. He gave
me a fantastic ride — huge back end, a little pacy, but when driven
into the bit, flows and shakes his head. As I rode under a canopy of
trees, I thought that the world had never looked so beautiful to me
before. This will sound corny to someone who doesn’t know what it’s
like to think your world is over, but I never even knew the meaning
of the word beauty before.

After an exhilarating ride, I took him back to the barn, rinsed him
off and put him back in his stall. Then I saddled up “Yeller
Feller”, a lively young palomino who is almost white now, but has a
golden coat starting to show from underneath his winter hair. I took
him back out in the pasture and passed a huge oak tree that had three
younger trees which had sprouted up through its limbs. I thought,
immediately, of taking a picture to share this really neat and
unusual formation. I took Yeller Feller through the mud, past the
cattle, which scared him a bit, and back up to the front, past the
motorcycle trailer which totally freaked him out. I spent quite
awhile on him, and then when I put him up, it was time to feed again,
a chore that is so enjoyable to me.

After the horses got through eating, I turned several of them out in
the big pasture and they ran like wild mustangs for at least 20
minutes. It was so much fun to watch. Poor Gunsmoke, the stallion,
watched from his stall and paced in agony, wanting to be with them.

I am so blessed. I just keep wondering what I did to deserve these
blessings, and hoping that I can truly earn them. Could it be
possible for cancer to be a gift? Honestly, life is much richer now.

General04 Mar 2007 08:52 am

It has been over three years since my MOAS (Mother Of All Surgeries). It lasted 10 hours, which is relatively short, and I had my gall bladder, about a third of my colon, about 4 ft of small intestines and my omentum removed. There was also a lot of scraping and removal of the tumor. I had 90 mins of heated chemo during the surgery, which did cause some complications a few days later. My white blood cell count plummeted to 0.96, which meant I was very susceptible to infection. Fortunately with some shots and a lot of prayer, a couple of days later it was back up to 16. I spent 17 days in the hospital and about 4 weeks at home recovering. Oh, and I also went home with an ileostomy (which I had before the MOAS).

I remember a lot of the thoughts that went through my mind the 5 months between being told I had cancer to the time of my MOAS. I remember thinking I would be dead in a few years. With the ostomy, I thought that my life was basically never going to be the same. I thought that I would never ride my motorcycle again. Never be able to go to the movies, or a restaurant or ever travel further than a few dozen yards from my house in case something happened to the ostomy bag. I remember lying in bed with no energy wondering if I would ever feel normal again.

After the ostomy was reversed about 4 and a half months later, I had so many bowel problems, once again there were times I thought I would basically be debilitated due to having to go to the bathroom about 10 - 15 times a day. I thought I would never be able to travel because I had to always be close to a bathroom, and even thinking about taking a trip on a train, plane or even my motorcycle scared me.

Even though I have been taking medication that helps control the bowel movements, I still have days with diarrhea, gas, etc. BUT, it’s nowhere as bad as I thought it would be. As a matter of fact, this week I started thinking about everything I have done since my MOAS over three years ago. I am back to riding my motorcycle (getting a new one in April), and have even taken a couple of multi-day trips (one even when I had my ostomy). I have traveled to Israel and floated in the Dead Sea. I’ve been on a cruise to Alaska and walked on a glacier. I’ve ridden the Florida Keys on a motorcyle. Visited Boothill and Tombstone in AZ and walked up a mountain to help raise money to fight cancer. I’ve travelled to the Bahamas and gone snorkeling in the Caribbean. I’ve ridden a jet ski and we were able to eat in one of the top ten restaurants in the world.

Why do I tell you all this? To let you know that there IS life after the MOAS. It took awhile before I started to feel somewhat normal again, but it did happen. Of course “normal” is different than it was before I was diagnosed with cancer.

So for those of you who have just gone through the MOAS, or are about to, don’t give up hope. Try to keep a positive attitude, try to excersice as much as you can keep plugging away. And remember to live one day at a time.

For others that have gone through the MOAS, let us know what you have accomplished since your surgery by leaving a comment. Let’s show everyone that there is life after the MOAS.

Kevin

General21 Oct 2006 07:22 pm

Reading some of the posts on our PMP Bellybutton forum, started me thinking about strength. Not physical strength, but emotional strength. When one is told they have cancer, or their loved one is told, how do these people find the strength to fight?

I remember laying in my hospital bed, over three years aog, waiting for the surgeon to come in and tell us what the pathology report said. Up till then, we were pretty sure I didn’t have cancer as the preliminary tests they did during surgery came back negative. But that morning, just to be safe, I kept praying that we would get good news. Over and over I prayed that I would be fine. Then something strange happened. All of a sudden, I started to pray for the strength to face whatever it was that was before me. I don’t know why my prayer changed, but I believe it prepared me for when the doctor came in and said those dreaded words, “I’m afraid it’s malignant.”

I don’t remember Roni’s reaction, but I remember mine, “We’re going to fight this.” I didn’t know how, and I certainly didn’t know what was in store, I just knew I wasn’t going to take it lying down. I wasn’t going to quit. This isn’t to say I have been “up” the whole battle. There were times I cried, saying, “I don’t want to die”. But after a few days, I would steady myself, go to the gym, and tell myself over and over, “I’m going to live, I’m going to fight, I will not go gently into that good night.”

So where did that strength to fight come from? Partly from my desire to live. Partly because I did not want to leave my wife (who would balance the checkbook? :-) ). Partly it came from friends and family, and from other PMP patients and caregivers. And that brings me back to the PMP Bellybutton forums.

There are two stalwart caregivers in our group, who have already been through hell. Watching their husband’s slow and difficult recovery. I watch in awe as they keep plodding along, under immense amounts of stress. I kept asking myself, where do they find the strength to keep going? Then I realized, they found the strength in each other. Even though they were both in the same boat, they were able to lift each other up, and encourage one another to keep fighting. To keep going. To not give up. And seeing that kind of strength, helps others who are also going through hard times, and those who WILL go through hard times.

Knowing that we are not in this alone is sometimes all we need to make it through just one more day.

Knowing there is someone who is fighting with us, is enough to give us the strength to not give up and continue the battle.

Aimee and Angela, here’s to you and the strength you give to each other and to the rest of us. May you soon find the peace that you and your family so greatly deserve.

Kevin

General28 Jul 2006 03:50 pm

While we were on our cruise last week, my sister played a song for me by Tim McGraw called “Live Like You Were Dyin’”. The song has now become one of my favourite songs. If you have never heard it before, you should check it out. If you aren’t a fan of country music, you should at least check out the lyrics:

Tim McGraw

Live Like You Were Dyin’

Verse 1
He said I was in my early forties, with a lot of life before me
And one moment came that stopped me on a dime
I spent most of the next days, looking at the x-rays
Talking bout’ the options and talking bout’ sweet times.
I asked him when it sank in, that this might really be the real end
How’s it hit ‘cha when you get that kind of news?
Man what did ya do?
He said

Chorus
I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Blue Man Chew
And I loved deeper
And I spoke sweeter
And I gave forgiveness I’d been denyin’
And he said some day I hope you get the chance
To live like you were dyin’

Verse 2
He said I was finally the husband, that most the time I wasn’t
And I became a friend, a friend would like to have
And all of a sudden goin’ fishin, wasn’t such an imposition
And I went three times that year I lost my dad
Well I finally read the good book, and I took a good long hard look
At what I’d do if I could do it all again
And then

Chorus
I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I’d been denyin’
And he said some day I hope you get the chance
To live like you were dyin’

Bridge
Like tomorrow was a gift
And ya got eternity to think about what to do with it
What could you do with it
What did I do with it
What would I do with it

Skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Blue Man Chew
And I loved deeper
And I spoke sweeter
And I watched an eagle as it was flyin’
And he said some day I hope you get the chance
To live like you were dyin’

Live like you were dyin’

To live like you were dyin’ x4

General02 Mar 2006 07:42 pm

It’s strange. Before I was diagnosed with cancer, I couldn’t care less about my birthday, but now, it’s something to look forward to. Why? Because every birthday now, means I made it one more year after being told I had cancer.

But that’s not the only milestone now. Oct. 8th is the anniversary of the day I went into the ER with severe abdominal pains, which led to my emergency surgery, temporary ostomy and cancer.

Feb. 18th is the anniversary of my MOAS. Feb. 22nd is our wedding anniversary. For the rest of our lives (which I hope will be a very long time), those two events will be forever linked.

July 6th is the anniversary of my exploratory surgery and ostomy reversal, which, believe me, was a big day.

So, every day, that is somehow related to my cancer, is an occasion I celebrate. It is one more reminder that I am alive, and I made it to one more milestone.

Kevin

General23 Jan 2006 04:22 pm

As some of you may know, Bob Peterson, the other “blogger” on this site passed away this morning. The following is from his family,

We are writing to let you know that Bob passed away this morning. His passing was peaceful and he was surrounded by his family, just as he wanted. We’re not sure if you wanted to update the PMP website to let everyone else know. We can tell you that we are grateful for all the support this group has provided. The gathering a couple weeks ago was so meaningful to him… he was thrilled to get to meet all of you in person. Your support and kind words helped him through this journey. We cannot express enough gratitude for the impact you and the PMP group have made in his life.

We anticipate that his celebration service will be on Thursday if anyone is nearby and wanting to attend. We will post on the Caringbridge website as we finalize the arrangments. If you want to contact us, the easiest way would probably be via posting on the Caringbridge website (it seems wrong to check his email).

Many thanks,

The Peterson Family

I believe Bob was the first person to contact us when I was first diagnosed, and strongly encouraged us to get in touch with a specialist. For the next two years, we kept in constant contact and updated each other with our progress/situation. Bob was an inspiration to Roni and me, and I know to all of us on the PMPBB list. He was always ready to share his story, to give advice, or to just listen. He turned out to be a friend and comfortor to all that met him.

A couple of weeks ago, Roni and I, and some others from the PMPBB group, had the opportunity to meet Bob and his wife in person. I will admit it was a bit strange meeting someone face to face for the first time, and knowing it would be the last. But we had a good time and enjoyed each other’s company. Bob constantly talked about how his Quality of Life was more important than his Quantity of Life. He demonstrated that by having one of his favourite cocktails, if for no other reason than to just taste it. He wanted to taste Life till the very end.

Last week, Roni and I were on vacation, and towards the end, I noticed that we had not heard from Bob in awhile. Then I started getting emails asking if anyone had heard from him. We knew his time was short, and we started to fear that Bob was just getting too weak to communicate. Today, we learned why Bob wasn’t posting any longer.

Bob’s family will be in our thoughts and prayers during this time of mourning. But while we mourn his passing, we celebrate his life and all that he did to help so many of us in the PMP community.

Bob was a PMP warrior, and this evening, I will raise a glass of scotch (one of Bob’s favourite drinks) and toast to his life, struggle and memory.

Goodbye my friend. I’ll miss you.

Kevin

General09 Jan 2006 05:29 pm

This was not going to be a subject matter that I was going to post on PMPAwareness, but considering how meaningful this week has been and will continue to be to me I’ve decided to write on the positive aspects of support communities, be they here, work, family or friends and the importance of passing your knowledge on to others.

For those that have linked to my Caringbridge site from “Our Stories” on the main page, you know that effective the 1st of the year I have elected to go into hospice. But entering hospice is not the purpose of this post.

From my previous blogs, you may have gathered that I have been adamant that seeking treatment and building a relationship with a recognized PMP specialist is the first, and most critical step in fighting this umbrella of diseases. I have for 4+ years felt a calling to evangelize to the newly diagnosed on the importance of this step and not to count on anything local non-specialist medical personal may tell you.

What overwhelms me since announcing to the fellow creators of this site, and members of the PMPBB club Yahoo site is the number of people that have responded that I was the first person to respond to them or that I was instrumental in convincing them to seek specialist help. Having felt that this is a calling, and having expressed to my wife many years ago that spreading this advice was my true avocation, to know that I have had an impact on some people is very gratifying.

On Sunday, fellow creators of this site flew in/drove to Chicago from around the country to get together. When you consider the logistical effort, caring and financial commitment that this involved, it is enough to bring me to tears and leave me speechless. Some of these people I have met face to face in the past, others I just know from a mutual commitment to get the word out on fighting PMP and to build this site.

I would never have been around to pass my advice and accumulated knowledge on to others, if another PMP patient hadn’t reached out to me many years ago to advocate seeking out the specialists (and 1 in particular). If he hadn’t cared enough to reach out to me, I would never have been able to reach out and assist others. I am begging each of you, as your knowledge increases and your fight continues, to reach out to others and spread the word. I encourage each of you to actively “Pay it Forward” as you come across other newly diagnosed PMPers. In this way the knowledge and efforts all of us have put into building this site will continue to be shared.

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