PMP Awareness Blog

Welcome to PMP Awareness Blog
Why are we here, doing what we are doing?

Hello, I am Bob Peterson and along with my friend Kevin Kersey will be hosting / moderating / writing pieces that we hope will motivate you to respond and participate in this blog. As time goes along both of us will share our experiences, but at this point as way of introduction just know that we are both PMP patients / survivors. Kevin is more of a survivor than me at this point, but hopefully that will change and I will catch up with him.

Today I want to share a story from a posting that was received on our sister PMPBellyButton Yahoo message board. The excerpt has been changed to hide the names of individuals and to protect the guilty. But in the story you will hear at least one reason why a number of us have felt the need for aggressive information sharing site such as PMP Awareness, and also one of the rewards that we receive when we are able to help someone. On to the story:

To all of you on pmpbellybuttons:
My sister is now recovering from her surgery at St. Agnes in Baltimore. Dr. Esquivel has done a tremendous job. We were faced with our home hospital telling her to go home, that there were no more options. She found your website and went to Baltimore. Dr. Esquivel could not promise us what he could do until the surgery, but felt he could at least giver her comfort and a little more time. We got more than that. Thanks to you people, St. Agnes and Dr. Esquivel.

She wanted me to let all of you know how wonderful she is doing. We all keep asking ourselves how this miracle happened. We want to give hope to people who could not find hope anywhere else. If we had listened to the Dr. at home hospital my sister was looking at only a month or two of life.

G-d Bless all of you at the website that helped us make this choice.

Those short 3 paragraphs point out several things that motivate us in producing this website:

1. Mainstream medicine (home hospital is a well respected major metropolitan teaching hospital) just doesn’t know enough about the PMP umbrella of diseases to help, and unfortunately may actually mistreat the patient.
2. Mainstream medicine if they admit they just can’t do anything, don’t know or won’t refer you to one of the renown specialists in the United States or Internationally who are saving lives everyday.
3. We as a group, advocate seeing one of the specialists as soon as the diagnosis comes down, and want to provide a site where you can find where they are and questions to ask them.
4. Finally, we want to give hope to people who could not find hope anywhere else.

While we can’t and won’t give medical advice, we will share our experiences and assist anyone in finding and communicating with the true PMP Specialists. Please don’t hesitate to ask, as the only reward we get are wonderful emails such as the one above.

I hope all of you have had a blessed Christmas and Hannukah season. We certainly have here.

This blog entry deals with taking control and being aggressive in fighting PMP and it’s related diseases. While the words taking, aggressive and fighting aren’t exactly in the holiday spirit, they need to be brought up here.

In June ‘04 I was on a business trip in Scottsdale, AZ. That evening I got around to opening the Wall Street Journal and came across a great front page article about a nurse diagnosed with lung cancer who refused to accept that her condition was “terminal” and “inoperable”. The story related her efforts to take control and starting a search to find physicians and facilities that would help her, not just tell her it was basically over. She was diagnosed in 2001 and as of mid 2004 was doing well. Testimony to her success in finding a surgeon and facility that succeeded in the face of other physicians saying she only had months.

The article motivated me to write a letter to the editor of the WSJ. One paragraph I wrote said:

Those of us with “incurable” or “rare cancers” really have no choice but to be aggressive…..in today’s health care environment patients have to be a driving factor in their treatment plan. You have to fight for knowledge, fight to educate your physician, fight to have treatment approaches approved by your insurance carrier.

Two weeks later 5 letters on the subject were published by WSJ on the subject. Mine was the only one by a patient/non-physician. 3 of the letters were from physicians condeming the physician and the nurse for going forward with aggressive treatment in the face of mainstream medicine saying nothing could be done. Thank goodness the last letter was from a physician who approved of the action. As he said “If you don’t like the answer, get another opinion, as the nurse did.” It is disappointing that 75% of the physician letters published basically said patients shouldn’t question their opinions, or to be aggressive in fighting for treatment options that give them a chance. Obviously, within medicine in general there is a sense by physician’s not to question their judgement. Those of us dealing with these rare conditions need to work very hard to find that 25% of physicians who won’t say “just give up”.

For those of us with PMP and releated diseases, we have a greater battle in being aggressive and taking control. First your diagnosing physician will see only a couple of cases in their professional lifetime. Second, the known specialists and their cancer centers, aren’t well known to mainstream physicians or the general public. Therefore you are sent in one of two directions. You get either “we will treat this like colon cancer” or “there is nothing we can do”. This is where we the patient has to take control, and hopefully why you are here at PMPAwareness.org. Now you have educate yourself, so you can educate your local doctors. You have to find the specialists, set up meetings and ulimately choose who to select. You have to take control and be aggressive, since the vast majority of the medical community won’t do it for you.

Please us our physician listing in the FAQ section to find the true PMP specialists. Ask questions of this community and work hard to educate yourself with information from the research section. Be aggressive and be and active participant in defining your treatment, you will be better off due to your efforts.

Bob

Hi, my name is Kevin and I’m a cancer survivor.

A little about me. I was diagnosed in Oct 2003 after an emergency surgery for severe abdominal pains. Up until then, I had been feeling fine. Even that morning, I felt great. Then all of a sudden, WHAM!! After 15 hours in the ER and an emergency surgery, I’m in the hospital with an ileostomy being pumped full of antibiotics.

So, what happened? Supposedly, I have had PMP for years and it had completely enveloped my appendix and decided on Oct 8, 2003 to burst, perforating my bowels. When the surgeon at St. Lukes in NYC opened me up, he saw all of the mucous, cleaned up what he could and closed me back up. 11 days later I walked out of the hospital. I think that surprised some people who thought it was a miracle that I was even alive.

It took a few of weeks and a second opinion to find out exactly what I had, to find an oncologist that would work with us, and to find Dr. Sugarbaker. The details of all of this is in my blog, so I won’t go into them here, suffice to say it has been quite a journey.

I had my MOAS (Mother Of All Surgeries) with Dr. Sugarbaker in Feb 04, at the Washington Hospital Center in Washington DC, where my wife and I spent our 12th anniversary. My diagnosis included signet ring cell and positive lymph nodes (3 out of 10 I believe), so the prognosis wasn’t great. As a matter of fact, Dr. Sugarbaker basically gave me a 25% of long term survival. But the surgery (10 hours long) was VERY successful and afterwards Dr. Sugarbaker said he would change the odds to 60 - 80% chance of no recurrence. Some people would say that was another miracle (I know I would). They told me to expect to be in the hospital for 3 - 6 weeks. I left after 17 days.

I still had an ileostomy, but Dr. Sugarbaker said that I would come back in 4 - 6 months for an exploratory surgery and he would reverse it then. Oh joy, another surgery. Anyway, I went back 5 months later, went through a toned down MOAS (this surgery was only 6 hours, but still included the heated chemo) and had my guts put back together. After 12 days, I was released and sent home. One of the best things you can ever hear a doctor say is, “I think you’re through here. You can go home.” You just can’t believe how great it feels to put on regular clothes and walk out of a hospital, well, maybe some of you can.

So, it has now been over two years since I was first diagnosed. Two years since I first started chemo. Almost two years since my MOAS and over a year since my last surgery. So, how am I doing now? Well, apart from the “bowel” problems (one of the side effects of an ileostomy, chemo and no gall bladder is diarrhea, and multiple bowel movements a day, hey, no one said this was pretty. ) I’m doing pretty good. For the lack of a gall bladder, I am taking Cholestyramine, which has been a godsend, and I wish someone had told me about it a year ago. I have gained all of my weight back and although I don’t get to the gym as much as I would like, I do a lot of walking. Especially today since here in NYC all of the public transportation is on strike and I have to walk about 2 miles to work and 2 miles back home, in below freezing temps. Stupid MTA.

So, that is a little about me. I’ll be working with Bob, who wrote the first post on this blog, to try to keep you up-to-date on what is going on in the PMP world, share some insights from being a cancer patient and survivor and hopefully bring a little humor to lighten up your day. Believe me, I know we all need some humor after what we all go through.

Well, that’s about all for now. Feel free to leave some comments and let us know what you like or don’t like about the blog or web site. Our main job here is to help turn cancer patients into cancer suvivors, and we need everyone’s help.

Kevin

I was amazed when I read this article about us not getting enough vitamin D. We are always told to keep out of the sun’s deadly rays, but in the process we don’t get the vitamin D that we need. It turns out that vitamin D can help prevent certain types of cancer.

I try to take a multi-vitamin and a complex B vitamin. Looks like I’ll be adding an extra vitamin D to my “cocktail”.

Kevin

Having cancer sucks. Ain’t no two ways about it. But that doesn’t mean you can’t keep your sense of humor and laugh along the way. Sometimes you laugh at jokes that you make and sometimes you laugh at your circumstances or what has happened to you. As for me, being a very sharp wit, there were many times I had people doubled over laughing. Well, OK maybe they weren’t double over, but I think a few did chuckle at my jokes. But this is a story that happened while I was in hospital. I wasn’t trying to be funny on purpose, and at the time, I didn’t see the humor in it, but in retrospect, it was funny.

I had my MOAS on Feb 18th, 2004. It was a 10 hour surgery with the heated chemo (no, this is not the funny part… it’s coming). When I came to, I had a breathing tube down my throat, about 600 tubes in various parts of my body and my hands were tied to my bed so I wouldn’t accidentally pull any of the tubes out. I don’t remember a lot about that time, but I do remember a feeling of complete helplessness. Since I couldn’t talk, I wasn’t able to tell the nurse what I needed (I think I needed a blanket), so she gave me a pen and paper to write with. Now, remember, my hands were tied, so I couldn’t see what I was writing. My penmanship is shoddy at best, so I can only imagine the chicken scratch I was creating, but somehow the nurse was able to decipher it and got me what I needed.

Now for the funny part. A couple of days later, my wife was getting ready to leave to go out to dinner with her parents and my parents (my parents came from OR to be with me, and my in-laws came from NC). Remember, I still had numerous tubes and Ivs attached to me, apart from being doped up on pain meds. Also, I hadn’t walked more than a few steps in days. Anyway, for some reason I told my wife that I wouldn’t be going with them. She looked at me quizzically and said, “Where do you think we’re going?” I said, “To the gym to work out. I’m not going to go with you.” She looked at me and said, “Uh, OK. You just stay here then.”

For some reason, I was under the impression that I was much better than I was and that if I wanted to, I could go to the gym (although, that wasn’t even where they were going.) One thing I learned about the pain meds you get in the hospital, they make you say funny things, even when you aren’t trying.

Got any funny stories of you own? Leave them in the comments section. We could all use a chuckle.

Kevin’s last entry on “Sometimes you just gotta laugh” got me to thinking about the importance of maintaining an overall positive attitude in this fight with PMP.

I’ve never really thought of myself as real positive thinker. In fact the cynical/sarcastic Bob uses the line “expect the worst, you will never be disappointed and will end up a happier person” frequently, going back for years. I don’t know if I ever really believed it, but it certainly reflects how I joked around and positioned myself with people.

But I realize now that if I truly lived by that sentiment, I would never have made it this far in the battle with PMP. By keeping a positive mental attitude, it kept hope alive. While all of us get rocked backward with the initial diagnosis, I bounced back from the initial news fairly quickly. When after the initial debulking the initial 9 months of worthless systemic chemo for colon cancer showed negative results. It would have been very easy to give up at that point.

Instead something, call it positive thinking or faith, drove me forward to research the alternatives that the 5 medical schools here in Chicago disparaged. It allowed me to keep pressing forward until I found the specialist right for me. High on my list, in addition to technical skills, was an philosophical fit; someone that was in synch with my Quality of Life objectives. It took some work to find the right fit, but a positive attitude, a faith that I would find the right person, kept me going on that search. Ultimately that attitude has given me nearly 4 more years than the 5 medical schools consensus gave me.

Bottom line, in this battle a positive thinking approach is critical. It is so easy to have the intial diagnosis knock you backwards like a 2×4 upside the head. If you don’t somehow pick yourself up the battle is lost. Please use whatever resources you have to get back a positive approach. This site is here as one of those resources and support is one of it’s primary purposes. Please use us as necessary.

This seems like one of those glaringly obvious messages, but felt it needed to be put on the table.

Bob

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.

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

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

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