Friends and Family,
Now that I have had a few days to think about this, I can move past feeling just the loss of my friend, and begin to celebrate his life. After all, Craig Blower not only impacted my life; he may also quite possibly have saved it. And in the telling of the story of our friendship, you may see some things that could make a difference for you, too.
It was an unusual way to start a friendship. Genevieve and I were in San Diego for Christmas, where her extended family gathered every year. With time to kill, I started surfing the web, and came across a cancer blog. The guy had very similar experiences to my own, and he was a pretty funny writer. I instantly liked him. I discovered that he lived in San Diego. I couldn’t pass up this opportunity, so I reached out to him through his blog and arranged to meet for coffee.
We hit it off right away. Neither of us had met anyone else with lung cancer, and we both had adenocarcinoma with the EGFR mutation. We started on Tarceva at about the same time, and we even had radiation to our hips at about the same time. We swapped stories about our remarkably similar treatment course, our families, and our lives.
Over future visits to San Diego, we included our wives – both who are wonderfully supportive – in this expanded friendship. The more we talked, the more similarities we found. Not just age and treatment, but even things like going to Hawaii every year, remodeling our kitchens within months of each other, and being the youngest child in our large families before a younger sibling came along years later. Craig came to call all these freaky similarities a “Lincoln-Kennedy thing.”
Eventually, Craig’s treatment with Tarceva stopped being effective. His oncologist referred him to UCSD to participate in a new clinical trial. That is how Craig came to be the first person in the US to get started on a new targeted genetic treatment, AZD9291 (now Tagrisso).
The results were remarkable. After just six weeks of treatment, his new oncologist took his before/after CT results on a road show to other oncologists. Until that point it had been challenging to recruit treatment subjects, but Craig’s Fabulous Makeover results led to a quick spike in enrollment in the study.
Almost too quick, as it turns out, for me. Just a couple of months later, CT scan results showed new growth of my own cancer. My oncologist was scrunching up his face, looking at the floor, and telling me he really didn’t have any good options for me.
“What about AZD9291?,” I asked.
“That’s in clinical trial now?”
“Yes,” I said. “In New Hampshire and San Diego.”
“San Diego is a thousand miles away.”
That’s right,” I said.
I wasn’t going to let a thousand miles, or my oncologist’s lack of knowledge about this clinical trial, stand between me and life-saving treatment! As soon as I got home, I called Craig and got the contact info for the clinical trial. Early the next morning, he called to tell me that the clinical trial was going to stop taking new applicants very soon, so I had better act quickly. It turns out that I only had until the end of the day to submit all of my medical records for the past eight years. With an enhanced sense of urgency, I made the deadline by the skin of my teeth. Sixteen months later, the treatment is still working for me.
That wasn’t the last time Craig had a major influence on my life. The following Spring, I saw that there was a conference in Washington, D.C. called the LUNGevity HOPE Summit. It sounded interesting, but I told Craig that I would be more interested if he went. The expense was also a factor. He gave me good news on both counts: He was planning to attend, and I could apply to go to the conference with all expenses paid, since it would be my first time attending.
That tipped the scales. I went to the conference, which inspired me in ways I didn’t expect. After meeting all those incredible survivors who were doing so much for the cause (not to mention getting a better sense of all the things that Craig was doing), I came away with more hope, and with a stronger sense of how I could be an advocate for lung cancer myself. Since that time, I have become actively involved with www.lvng.org and their Facebook LVNG With Lung Cancer community, I have been interviewed for a couple of oncology waiting-room newspapers and magazines, done public speaking, and volunteered with the American Lung Association. Had Craig told me he wasn’t going to the HOPE Summit, and not mentioned that I could go for free, all of these wonderful changes in my life might not have happened.
A year ago, Craig started getting some growth in his cancer again. At first it was questionable, but from the beginning it was enough to worry him that he could get kicked out of the clinical trial. Each scan after that showed a little bit more growth here, then a little more there. Craigshared that he contacted one EGFR guru, but the specialist didn’t have time to see someone for a one-off consultation. It seemed as if Craig started hanging on even tighter to his only lifeline, which was the clinical trial he was in. His oncologist didn’t have any new ideas for him, other than to radiate new spots as they popped up.
While Craig's oncologist was telling him there was nothing else out there, I was feeling pretty helpless as his friend. In desperation, I started urging him to get a biopsy and a second opinion. The biopsy would tell if another targeted genetic treatment might work for him, and the second opinion might tell him if there was some idea his doctor had missed. However, given the choice between trusting your oncologist, who could kick you off the treatment that you believe is saving your life, and following the advice of a friend with no medical training, it’s easy to see why he stuck with doctor’s orders. Eventually his doctor did a biopsy, and they found that he had a genetic mutation that could be treated in a new clinical trial. However, the trial was in Boston. Craig scheduled his initial appointment, but it was already too late. By then, his health was too compromised to travel. As Kim said around that time, he was fading in and out of lucidity from the pain meds.
It was right at that time, a week before Craig passed, that I had another appointment with my oncologist in San Diego. Genevieve and I arranged with Craig’s wife, Kim, to see Craig on our way from the airport to my appointment. It broke my heart when she told me on the phone that Craig was worried that he would disappoint me, because he didn’t make it to Boston. I made sure to tell him that I was sorry he wasn’t able to go, but that it would not have been humanly possible to get there.
I also thanked him for quite possibly saving my life, but he dismissed it with a wave of the hand. “You would have found another way.”
I am pleased to say that I had better success with his acceptance of my final words to him:
Thank you for being my friend.
Love,
Dann
*** A Special Request - UPDATED ***
I'm participating in an event to raise money to fight lung cancer - and I need your help!
I will be attending the LUNGevity Foundation's National HOPE Summit in Washington, DC, in May - it's a special conference just for lung cancer survivors like me. Since I was able to raise $1000 or more in donations, LUNGevity will cover my travel expenses, including US round-trip transportation and hotel accommodations. However, I have raised the bar, and I am trying to raise as much as I can for LUNGevity. AND NOW THERE IS AN ADDED INCENTIVE.
THIS IS THE NEW PART: The wonderful, compassionate, and very supportive partners at the real estate brokerage in Portland where I work, Macadam Forbes, are offering a MATCHING GRANT. FROM TODAY FORWARD, THEY WILL MATCH ANY NEW DONATION, DOLLAR FOR DOLLAR, UP TO $500. If you give $10, you will be raising $20 for LUNGevity. If you give $100, you will be raising $200.
Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.
If you wish to donate, please go to my LUNGevity page: http://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=15681