My Tribute to Craig

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

Turtle Rescue, Meet Your Ambassadors, and More

Friends and Family,

What a week! First, there were turtle rescues.

No, not THAT kind. Rescue OF turtles, not BY Ninja Turtles. The second option would stretch believability even more than if I told you that I was still alive after nine years with lung cancer.

No, I'm talking about rescuing REAL turtles. That means we're back in Hawaii again, taking our usual morning beach walks. Only this walk was far from usual. First, we  came across this distressed-looking adult turtle, out of the water, baking in the sand.

While Genevieve called the Turtle Rescue hotline (yes, there is such a thing in Hawaii), I found a five gallon bucket and poured ocean water on the poor turtle.

Meanwhile, the Turtle Rescue man told Genevieve that finding this turtle on the beach either meant that it was in distress, or that it was taking a nap.

When I poured the bucket of water on the honu (Hawaiian for turtle), it immediately did a 180 degree spin in the sand and headed for the ocean at full speed.

So depending on your point of view, we either rescued this poor turtle, or made him grumpy by waking him up from a good nap.

Next, on the same walk, we come across a family with a young boy that has been stung by a Portuguese Man-of-War, which is a tiny blue bubble of a creature with a three-foot tale that feels like a bee sting on a string.

The boy had been touched on the leg, chest and arm, and welts were forming. Genevieve instructed us to get the white berries off the naupucka shrub that grows just about everywhere along the beach. We gathered berries, mom rubbed them in, and the boy immediately got some relief. Genevieve told them to go to the ER if symptoms worsened or he had difficulty breathing. The mom thanked us for the instant relief, and for saving the family a trip to the ER.

This stuff never happens, but this day EVERYTHING was happening. We were almost back to our beach house, when we saw a fisherman struggling to get his line out of the water. At first we thought he had a snag, but eventually we saw what he was reeling in: You guessed it. A turtle.

I offered to help. He reeled it in until I could grab the turtle and lift it by the shell. I held it while he ran back to get his pliers, and then pulled the hook out of the poor turtle's mouth. Once it was out, I let the turtle loose in the water, and he swam off at Olympic speed. He didn't even say thank you, probably because his mouth was too sore.

So I'm starting to think that this is why I'm still alive: To rescue turtles. But then Genevieve reminds me that we have been invited to be ambassadors.

Sounds impressive, doesn't it? Now you're wondering, "ambassador of what?"

I guess "Cancerland" would be the best answer. This is four-day speaker training program in Chicago, so that Genevieve and I can become more skilled at public speaking, and then speak at regional cancer-related events when the opportunity presents itself. Now THIS has our full attention. I can't think of anything more fulfilling than providing hope and inspiration for other people that are going through what we're going through.

Last, but number one on my mind for the past couple of weeks, I want to give you an update on my friend Craig Blower. Craig and I have been on parallel paths with Tarceva and then AZD9291 for the past almost three years, although Craig started AZD9291 a few months before me. He has had growth in his existing spots, and metastasis to some new ones. The treatment course is unclear at this time. He is asking for virtual hugs across the miles. If you are so inclined, visit https://craigblower.wordpress.com/ and say hello. It would mean a lot to him, and to me as well.

Love,

Dann

September Scare

Friends and Family,

It's that scary time of the year again. No, I don't mean it's time to go back to school. It's the scary anniversary time.

Nine years ago, close to this time of year, I went in for an X-ray of a sore back. The X-ray was photo-bombed by a tumor in my lungs, so I started chemo, and had the offending tumor and the lobe around it removed.

Five years ago, close to this time of year, we were happily enjoying almost five years of my being cancer-free, when a routine scan showed that the culprit had returned - in spades. The inside of my lungs looked like fireworks had gone off everywhere. There was too much to remove, but with multiple treatments, we kept it at bay, and even shrunk it.

Last year, at about this time of year, Tarceva stopped working, and the cancer started growing again. My own oncologist could see no good treatment options. I will say this: He should never play poker. It's a good thing I found the AZD9291 clinical trial without his help.

So, after getting bad news in three different years at the same time of year, Genevieve and I were having one of the worst cases of scanxiety we've had since almost the very beginning of this ride. Compounding the fears, results are now being published about how long AZD9291 typically works, and it's usually just about as long as I have now been on it.

Throwing me further off balance, my buddy Craig Blower https://craigblower.wordpress.com has had continued slow growth of his cancer while on the same drug as I am. I'm still on the edge of my seat waiting to find out how his last scans turned out. Meanwhile, Kim, a fellow Portland lung cancer blogger http://aquariusvscancer.com/author/kimmywink/ that I met at the HOPE Summit in May, is going through brain radiation. Compassion is not serving me well as I worry about these two, and my concern for them hits a little too close to the bone. 

Yes, we panicked a little. Rather, Genevieve panicked a little, while I was ping-ponging wildly between confidently believing that I'm going to be around until I'm 90, and worrying that I will be in hospice within a year. 

That makes the results from last week's scan all the sweeter. Yes, there has been no growth in the cancer! Now I'm SURE I'm going to live until I'm 90!

...at least until the next scan. 

So what have I learned from this? There are limits to what living in the present can do. Realistic fears are still going to creep in from time to time, and maybe that's not such a bad thing. Sharing our fears has brought Genevieve and me even closer, which helps me to not feel so alone dealing with this. Sharing with you helps in the same way. It also puts me in touch with my own humanity. All my hopes and fears bubble to the surface and remind me that I am alive, and how much I value this life that I have. 

I hope you are in touch with the treasures in your own life. Maybe you can pull it off without a heaping dose of fear.

That would be pretty great, wouldn't it?

Love,

Dann

If Your Fate was in an Envelope, Would You Open It?

Friends and Family,

I had it right there in my hands. Should I open the CT scan report now to find out if the cancer has grown, or wait until tomorrow, when I see my oncologist in San Diego?

That’s what I was asking myself on Monday. I had my CT scan at OHSU (Portland) in the morning, and then came back in the afternoon to pick up the digital images (too big to email) along with the report from the radiologist. This is S.O.P., now that I am having my CT scans in Portland the day before we go to San Diego for the clinical trial.

What would you do, if you had your fate written down in an envelope? Would you open it? Burn it?

This wasn’t a question that would go away. Genevieve and I slept with the report five feet from our bed. We left for the airport at 3:30 in the morning, and the report was in my backpack, calling me. Flying down, I could hear a little voice from the overhead bin. “You don’t have to wait.”

I grabbed my backpack off the plane, and it was in my hands again. I didn’t let go until we rented a car and dropped it off at the hospital for my doctor, three hours before my appointment.

Then we waited.

I’m entering the time window when AZD9291 stops working for some people. This time window stays open roughly as long as Tarceva, but it varies a lot from person to person. For example, I met people at the HOPE Summit in DC this May that had been on Tarceva for seven years.

Since there is no clear treatment path after this, I don’t know what will happen if/when this stops working. The longer I stay on it, the more time we have to find the next miracle treatment.

At long-long last, we met with my oncologist. He told us the spectacular news we were waiting to hear. The cancer hasn’t changed a bit. We have six more sweet weeks of life to be grateful for!

OK, be honest. Up until now you’ve been thinking, “Dann, are you NUTS? Why didn’t you open the envelope?!!!” Although there may be a little (little?) madness, there’s some method in it. I’ve learned this lesson the hard way.

Nine years ago, when I was first diagnosed, I had chemo and surgery, and became cancer free. However, I was a lot more on edge about the whole death-around-the-next-corner thing than I am now. A year later, I got a call from my primary care doctor. He said my new CT scan had shown a “hyper-dense nodule,” and wanted me to come in for an ultrasound to confirm if it was cancer. Genevieve and I both went into shock. I can still remember where we sat when we discussed it, and feel the pit in my stomach. Fortunately, my appointment with my oncologist was only a few hours later. He told me that the report had been misread by my primary care doc (who has never butted in to my cancer treatment before or since). There was no cancer, and as it turned out, there wouldn’t be, for another four years.

THAT is why I don’t want to see the reports before I talk to my oncologist. A little bit of knowledge is a dangerous thing. Dr. Patel was complimenting me for my “will power” (won’t power?), but this was really about not setting myself up for unnecessary drama.

I have enough of that already, don’t you think?

Here’s hoping that all of your surprises are good ones.  

Love,

Dann

New CT Results, and Requesting a Little Hope

Friends and Family,

My latest CT scan results are in, and things remain spectacularly unchanged. Can you see my smile from there? :-) I feel increasing gratitude after every scan, because I can’t count on this lasting forever.

I know this because the New England Journal of Medicine just published the Phase I trial results for AZD9291 (http://www.nejm.org/doi/full/10.1056/NEJMoa1411817). The average time people stayed on the drug before their cancer started growing again was 9.6 months. If my results are average, I have a couple of months before things change. I don’t plan to be average. I’m treating the stats like you would a pole vaulting competition. Somebody has to set the record. 

Ever since I ran into a guy at the LUNGevity Hope Summit who had been on Tarceva for eight years (roughly seven years longer than average – and still going), it has raised my level of hope.

How much difference can hope make? How much difference can love and support make? This is where I’m asking for your help.

Two things. First, I’m asking if you will send me your images of hope. In my last blog entry (below) I posted a couple of images of "Hope" that I found in Washington DC. I’m hoping you will help me expand that list by emailing more images to me. It makes more difference than you can imagine. As proof, those images you sent to me of light zapping the cancer and healing light a few months ago kept me (and many others) flying for months!

Second, I’m inviting you to join me for the Lung Love Run/Walk on Saturday, June 20th. My very own team, “Live Lung and Prosper,” welcomes new members and/or donations at http://bit.ly/1Kj9tbk. If you join by this Friday, June 29th, they can still guarantee you a tee shirt. After that it’s a gamble. (Sorry, it’s the real estate agent in me. Gotta create a sense of urgency.)

OK, I held back the best part of my CT scan results. It showed that my Swiss cheese hip bones and spine are turning solid again. Was this improvement caused by the AZD9291? Was it caused by the bone strengthening (Zgeva) injections combined with calcium supplements? Was it the healing light sent by y’all???

Hoping everything is going well for you, too.

Love,

Dann

Footnote: If you don’t have my email address, go to the Contact tab at the top of the page and give me your email address. I’ll reply with mine.

Things are going to H@%%

Friends and Family,

That four-letter “H” word is back on my mind again lately, and it’s not the one that would have gotten me in trouble in grade school.

About three and a half years ago, my company had new pictures taken of all of the brokers. Since I was just about to start chemo, the timing for a picture wasn’t the best. Should I have my picture taken with a full head of hair? If I did, then people who first saw my picture on our website wouldn’t recognize me when they met me and my shiny, pale, bald, head in person.

So should I shave my head bald? That would be confusing later, after I finished chemo, and my hair grew back.

So which H-word is the real me? Hairy or hairless? And why is this so important? Sorting this out was giving me a bad hair day.

I decided to compromise. I gradually cut my hair shorter over a few weeks, so that everyone – including me – could get used to it. Just before I had my picture taken, and before chemo kicked in, I had my final haircut. This cut left little to the imagination.

After chemo was finished and my hair grew back, Greg, one of the partners, asked me if I wanted to have my picture taken again. “No,” I said, “I like the picture. Let’s leave it as it is.” Greg kept asking over the next three years. Although my answer didn’t change, Greg was right to wonder.

I worried that I’d soon be back in chemo, and once again bald. And if that happened… well, before long  they may not need any picture of me on the website. See where I’m going with this? There’s more meaning to hair than hair. I had more doubts about my future than I would care to admit. It was a lot like  a couple of years ago, when I thought that there was no point in buying new underwear if I didn’t think I’d be around long enough to use it.

So why did I finally ask to have my picture retaken? It’s because of that H word. No, I’m not talking about H@%%. I’m also not talking hair. I’m talking hope.

Running laps around your life expectancy a few times can do that for you. So can having great success on a new clinical trial. Having amazing doctors that have creative ideas about how to deal with lung cancer can give you hope too , even if no cutting-edge treatments would be a fit in the near future. My future’s so bright, I gotta wear shades. Maybe it’s so bright because of all those images of rays of light zapping the cancer cells that all of you have sent me.  

Here’s more reason for hope: I have been on three treatments that didn’t even exist for lung cancer patients the first time I went through cancer. Tarceva, Avastin, and AZD9291 are all new. How can that not make you more optimistic?

You can probably even see it in my picture. You know, the new, permanent one.

Maybe I can even relax a little. You know, let my hair down. Not take things so seriously.

I hope there’s reason for hope in your life, too.

Love,

Dann