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