It is early; the day after the Breezy Point Triathlon, as darkness gives way to light the colors of the garden are just starting to show.
I think about yesterday and strangely my thoughts are not mostly about the race. Instead, I see people, many we have known for decades, and many more I have met in the last week. All are intense, most are smiling, all are determined, and all are moving toward a common goal.
JOHNNY, Tim, Mikes and Nate’s friend who showed up on Thursday for a weekend with the Blackwood’s prior to his summer on the tall ship the Virginia. He was truly a deckhand in our home. He pitched in wonderfully in countless way. GARTH similarly, although not competing was an invaluable presence and servant. We are indebted to both these guys as they were the oil that keeps the machine running.
CHRIS and HEATHER generously opened their home and waterfront to all of us last week on Saturday, and again on Wednesday when we dropped in and on Thursday when we “dropped in again” and on Friday when we arrived I said to Heather “I’m home”. I said it as a joke but after meeting both Heather and Chris parents it was obvious why each of them have such large hearts. There is a connection that links our family to theirs across generations. Not to mention there daughter Holly whom I feel more like their uncle than her doctor.
RONNIE is long time patient of mine who has done dozens of Triathlons - but none since 1990. Our silent encouragement of each other in the “Old Guys Rule” club was broken as he greeted me by crossing well over the street with a big smile and high five. “At this point I’m just running for the beer” he joked as we both “ran” in opposite directions.
KATIE is long-term university friend of Naomi. This was her first experience in our Virginia home, first triathlon and first Blackwood cappuccino from Brewtus.
The WILLIAMS family, Neil Rosemarie, Chase, Logan and Lauren. I may owe my life to Logan who swam with me across Chris’ lake last week. She kept asking are you OK Dr. Robb? Who knows if not for her I would probably be on the bottom of the lake right now. Seriously, it takes a lot to keep an initiative like this growing and moving forward. Young families like this are great friends who have a wonderful ability to catch the vision of the larger picture and put all their heart and soul into the effort.
SCOTT and KAREN KEENAN. Probably more than anyone Scott has had a practical vision and has come alongside all of us as an encourager. He has the biggest heart and is out front of even many of the Blackwoods when it comes to seeing what needs to be done and making suggestions for practical implementation of these goals.
The LOUD family took two of their own road bikes in for a tune up to get them ready for our family members to ride. Without their generosity, some of us would have been unable to participate. Where would we be without their support?
Anna’s friends from Norfolk Academy ABBI, MEGAN, KELSEY, SARA, JENNIFER, ALLISON, MICHELE, BECCA, KATHERINE, RACHEL, and from Oscar Smith KAITLIN, JADE, NICOLE, and KERRY were all willing to sacrifice. Yesterday they gave up valuable study time to race and help out in different ways, some were the first to meet their fundraising goal and who were willing to say months ago, “ I don’t want birthday presents this year, please give to help Anna’s mom instead.
Then there was MIKE ROMASH, my biking buddy and JON his son, whose humor and support of Jesse was terrific. He was the first to have his own fundraising page. They had to leave the party “early” to drive Jon back to Pittsburg where he attends medical school.
Thinking of long drives, LAUREN and her husband NICK who I met for the first time yesterday, arrived from Boston to participate as a team in the Triathlon Lauren is the executive director of Caring for Carcinoid Foundation and their presence and participation here made us feel connected with part of the larger picture. We are very grateful for their support
Many other have supported the Tri for Life with their own fundraising pages including the LAW FAMILY, , the CUMMING FAMILY, the ROWLEY FAMILY, MATT LEE and NATHALIE.
“Family” members, who though always present deserve special mention. NANCY whose grand love for her sister spills over in the countless ways she supports her and our entire family. I am immensely proud of my family many of whom finished fast. Nate achieved second in his age group is normally laidback pushed himself to puke at the end but it paid off. Nate was followed closely by Joe age 14 who placed 5th and Davey 7th in the same age group that went all the way to 29 years. Anna’s time was 4th overall in the women despite broken laces she needed to stop twice to tie. Naomi 4th in her age group. Ben and Jesse did 11th and 12th in the men's open category. Had they done age group their times would have placed them 1st and 2nd. Catherine achieved second place in the team swim. All tolled our family including Bruce, Patrick, Nicole and Nancy swam 14000 meters, biked 280 km and ran 70 km
My greatest “high” of the day however was finishing the race not by myself but with my brother in-law BRUCE. The triathlon concept applied to carcinoid is not only to finish but also to finish together. Together we stepped across the finish line. This was a powerful image of the most important aspect of where we are in this process. In this race the win is the cure. Completing yesterday’s race gives all of us confidence that we have done it. It gives us encouragement to press on, a hope to endure and a reference point for the next race and the surety that we will be able to accomplish what was once a mere dream.
Many others not mentioned are watching this race and are a constant source of encouragment to Catherine with their hearts, concerns and prayers.
The felt pen marker on the back of my right hand is fading but the image of those mentioned above is not, most are smiling, all are determined and all are moving toward a common goal.
Looking outside, darkness has giving way to light and the colors of the garden are brilliant. We are on the edge of something great. The next years will truly be a turning point in neuroendocrine research. The effects of which will profoundly affect our ability to find many types of cancer biochemically and treat to cure.
Looking to the future, won’t it be great if all of us can look back on this time and say “I was part of something great that changed the world in a big way”. Isn’t it wonderful to turn something bad into something good, sickness into health, fear into hope, ignorance into knowledge, and loneliness into friendship?
Saturday, June 14, 2008
Tuesday, May 27, 2008
An "Uncommon" Cancer A "Common" Mistake - A Letter to Physician Colleagues
Dear Friends and Colleagues
An “Uncommon” Cancer?
Many of you, like me thought of Carcinoid as one of those Zebras about which you would learn only enough to answer the single question on the your board exam (if there even was a single question). You could then forget about it because you would probably never ever see a patient with this rare condition.
As a Family Physician I see common things all the time. I pride myself in my ability to (with the help of many of you) diagnose and manage simple and complex cases. My wife Catherine at age 50 had several years of intermittent mild asthma, reflux and eventually “menopausal” flushing. In fact, these symptoms were caused by carcinoid cancer and its metastatic effects known as Carcinoid Syndrome. Her diagnosis was confirmed several weeks later by removal of a neuroendocrine tumor from her appendix in December 2005.
You can imagine my disappointment. NETs often mimic other conditions and even when suspected are difficult to diagnose. Standard imaging studies with CT, MRI and even PET scans fail to reveal these elusive cancers. Even when suspected, specific testing for carcinoid such as Octreotide scans and serotonin remain normal. I began looking for telltale signs of neuroendocrine tumors. Unfortunately, there is no cure for Carcinoid. I now know that approximately a quarter of a million Americans have carcinoid or a related neuroendocrine tumor (NET). Tragically, it is estimated that about half of this number, or 125,000 Americans, have not been diagnosed.
Neuroendocrine cancers are not rare; they are unknown.
As a result of my personal experience I am now determined to:
1. Increase Awareness in the Medical Community: Often doctors are insufficiently aware of NET/carcinoid symptoms to consider the diagnosis and make referrals. Accurate knowledge is the key to optimal treatment. Even with accurate diagnosis at this time there is no cure. Fortunately, many individuals have an indolent clinical course for years making the diagnosis even more elusive. Some NET /Atypical carcinoid cancers behave like small cell cancers and even with optimal managment have a dismal prognosis.
2. Fundraising: blackwoodcaring.com is our family website. This diarizes our journey as a family and offers a template for increasing awareness through this site is fast, simple, and secure. Because neuroendocrine cancers share molecular features of pancreatic, lung, and other cancers, as well as diabetes, your donation has the potential to help millions of people in North America alone, and tens of millions worldwide. You can read about more ways to participate on our sunflower and triathlon pages.
3. Research: The Caring for Carcinoid Foundation is unique in its focus on research. We pursue a clearly defined, 3-step research road map based on guidance from our Board of Scientific Advisors. The scientists we support are already making progress. However, we urgently need your help to expedite and expand the research. Carcinoid patients struggle and die every day because no cure exists. We know the lonely feeling of fighting an incurable cancer that receives little governmental research funding and little pharmaceutical company interest. We also know that greater insight into carcinoid cancer will result in greater insight into other cancers such as neuroendocrine, endocrine, gastrointestinal, and prostate. There is much to be optimistic about. The first scientific blog gives us much to be thankful for progress already made. The author is one of the foremost carcinoid researchers working in Boston at the Dana Farber Cancer Institute.
Please join me in this fight. June 1st, I will be participating in the Breezy Point Triathlon along with Catherine and all of our 10 children. Many other Triathletes are also joining us is this cause. For most of our family members, this will be our first Triathlon but it will not be our last. It marks the beginning of a long intense struggle as well a focal point for awareness. I am competing to complete. Although all of us dream of winning a more realistic goal is to finish. This is also true of Catherine’s fight with Carcinoid and gives us a tangible way of identifying with her - and many others with NETs - as we struggle with our own minds and bodies. As we train for this race, our dedication to finish is both a symbol and a challenge.
All donations go directly support carcinoid cancer research and are tax-deductible. Together, we will achieve our mission. Thank you for your dedication and generosity. The good news is that carcinoid, along with other cancers, is curable. Recent breakthroughs in science have made what has always seemed a mere dream – discovering a cure for cancer - an achievable goal. In 2003 the National Cancer Institute (NCI) set as its goal to cure suffering and death related to cancer by 2015.
I am deeply indebted to many of you who have over the last 14 years since I moved from Canada to Virginia provided excellent care and support to many, many of my patients. I am deeply grateful for your care for all, but especially to those of you who are involved in Catherine’s care.
Yours sincerely,
Robb Blackwood MD
An “Uncommon” Cancer?
Many of you, like me thought of Carcinoid as one of those Zebras about which you would learn only enough to answer the single question on the your board exam (if there even was a single question). You could then forget about it because you would probably never ever see a patient with this rare condition.
As a Family Physician I see common things all the time. I pride myself in my ability to (with the help of many of you) diagnose and manage simple and complex cases. My wife Catherine at age 50 had several years of intermittent mild asthma, reflux and eventually “menopausal” flushing. In fact, these symptoms were caused by carcinoid cancer and its metastatic effects known as Carcinoid Syndrome. Her diagnosis was confirmed several weeks later by removal of a neuroendocrine tumor from her appendix in December 2005.
You can imagine my disappointment. NETs often mimic other conditions and even when suspected are difficult to diagnose. Standard imaging studies with CT, MRI and even PET scans fail to reveal these elusive cancers. Even when suspected, specific testing for carcinoid such as Octreotide scans and serotonin remain normal. I began looking for telltale signs of neuroendocrine tumors. Unfortunately, there is no cure for Carcinoid. I now know that approximately a quarter of a million Americans have carcinoid or a related neuroendocrine tumor (NET). Tragically, it is estimated that about half of this number, or 125,000 Americans, have not been diagnosed.
Neuroendocrine cancers are not rare; they are unknown.
As a result of my personal experience I am now determined to:
1. Increase Awareness in the Medical Community: Often doctors are insufficiently aware of NET/carcinoid symptoms to consider the diagnosis and make referrals. Accurate knowledge is the key to optimal treatment. Even with accurate diagnosis at this time there is no cure. Fortunately, many individuals have an indolent clinical course for years making the diagnosis even more elusive. Some NET /Atypical carcinoid cancers behave like small cell cancers and even with optimal managment have a dismal prognosis.
2. Fundraising: blackwoodcaring.com is our family website. This diarizes our journey as a family and offers a template for increasing awareness through this site is fast, simple, and secure. Because neuroendocrine cancers share molecular features of pancreatic, lung, and other cancers, as well as diabetes, your donation has the potential to help millions of people in North America alone, and tens of millions worldwide. You can read about more ways to participate on our sunflower and triathlon pages.
3. Research: The Caring for Carcinoid Foundation is unique in its focus on research. We pursue a clearly defined, 3-step research road map based on guidance from our Board of Scientific Advisors. The scientists we support are already making progress. However, we urgently need your help to expedite and expand the research. Carcinoid patients struggle and die every day because no cure exists. We know the lonely feeling of fighting an incurable cancer that receives little governmental research funding and little pharmaceutical company interest. We also know that greater insight into carcinoid cancer will result in greater insight into other cancers such as neuroendocrine, endocrine, gastrointestinal, and prostate. There is much to be optimistic about. The first scientific blog gives us much to be thankful for progress already made. The author is one of the foremost carcinoid researchers working in Boston at the Dana Farber Cancer Institute.
Please join me in this fight. June 1st, I will be participating in the Breezy Point Triathlon along with Catherine and all of our 10 children. Many other Triathletes are also joining us is this cause. For most of our family members, this will be our first Triathlon but it will not be our last. It marks the beginning of a long intense struggle as well a focal point for awareness. I am competing to complete. Although all of us dream of winning a more realistic goal is to finish. This is also true of Catherine’s fight with Carcinoid and gives us a tangible way of identifying with her - and many others with NETs - as we struggle with our own minds and bodies. As we train for this race, our dedication to finish is both a symbol and a challenge.
All donations go directly support carcinoid cancer research and are tax-deductible. Together, we will achieve our mission. Thank you for your dedication and generosity. The good news is that carcinoid, along with other cancers, is curable. Recent breakthroughs in science have made what has always seemed a mere dream – discovering a cure for cancer - an achievable goal. In 2003 the National Cancer Institute (NCI) set as its goal to cure suffering and death related to cancer by 2015.
I am deeply indebted to many of you who have over the last 14 years since I moved from Canada to Virginia provided excellent care and support to many, many of my patients. I am deeply grateful for your care for all, but especially to those of you who are involved in Catherine’s care.
Yours sincerely,
Robb Blackwood MD
Thursday, April 17, 2008
The Cherry Tree
“I was in the branches of the cherry tree and you didn’t even see me”, she exclaimed with the delight of a child. “The blossoms were so heavy they were hiding me.”
I saw her last week in the morning staring out the music room saying “Oh Robb, isn’t it wonderful” I feel her listening to the music of the cherry tree, coming soon to bloom. She was looking past the ivy at the cherry tree…
I saw her in the yard today arms outstretched, her eyes looking up to heaven, she proclaims again, “Isn’t it wonderful
… it is spring”
The birds wake her every morning with their chorus also announcing with their fragile voices, it is spring,
rise and live,
rise and sing,
it is spring.
The birds today were also with her in the cherry tree,
so surrounded by blossoms,
color pink and white and pink,
pink with softness of cherry blossom petals,
hardness of cherry wood firm branches carry me,
surround me and bury me in your wonderful strength.
It is spring, rise and sing,
it is spring rise and live,
it is spring, rise and rest in the strong arms of the cherry tree,
rise and hide among the heavy cherry blossoms
Let us be lost in softness, color, strength and wonder of the cherry tree.
It is spring,
it is new,
it is LIFE.
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