Your Custom Text Here
Thriving with lung cancer since 2006
In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show you the many faces of lung cancer. If you're wanting to catch up:
Profile for November 7th is at http://bit.ly/1QjtVif.
November 8th http://bit.ly/1ll00cQ
November 9th http://bit.ly/1MC5xpD
November 10th http://bit.ly/20Ny7dX
November 11th http://bit.ly/1QjtVif
In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show you the many faces of lung cancer.
Today's lung cancer survivor and spectacular advocate is Lysa Buonnano, who impresses me more each time I talk with her!
Twitter handle: @thelysabee
Blog: https://lysabuonanno.wordpress.com/
How are you connected with lung cancer? “I was diagnosed with Stage IV lung cancer four years ago. I have been through chemo, radiation, four surgeries, and now targeted drug therapy (my miracle pills).
How do you spend your time? “I have done eight advocacy trips in the past four or five months, such as testifying on Capitol Hill to increase funding for cancer research, and doing other public speaking. I'm also a Lifeline mentor with Lungevity, and I'm a peer reviewer for the Department of Defense's Lung Cancer Research Project. I do something to support people that I know with lung cancer at least once a week, such as researching treatment options, and helping someone in my support group get insurance benefits for treatment. When I’m not doing advocacy, I spend a lot of time with my daughter and my family.”
How did you first get involved with advocacy? “I connected with my local chapter of the American Lung Association, and I have become their spokesperson for television and other media. That led to getting paired up with the national office of the American Lung Association. They fly me to D.C. a couple of times a year to meet with congress.
Why are you an advocate? “This is my way of giving back, and contributing to other people. I want to give other survivors hope that their life can still carry on.”
What does a typical day look like for you? “I get up and turn on my tablet to check emails, and then I do an internet search. I have Google Alert set up for key word searches: ‘Lung Cancer,’ ‘Medical Research,’ and ‘ROS1 (my genetic mutation).’ After that I try to have time for coffee on my patio. I enjoy looking at my waterfall.”
What gives you hope? Research, and other survivors. To know ten-year survivors and to learn about all the new clinical trials makes me think I'm going to be around for a while!
What is something that people may not know about you? “I’m teaching myself to paint. I’m not great, but it’s therapeutic.”
“I made these for my kids. My daughter is a big Marilyn Monroe fan, and my son plays the guitar.”
Do you have a guiding mantra you live by? “Every day is a gift… even on my not so great days.”
What else do you want people to know? “Anybody with lungs can get lung cancer. It doesn’t discriminate.”
To see yesterday's profile, go to http://bit.ly/1PnCeYI.
To see tomorrow's profile, go to http://bit.ly/1Wx8sXo.
To see the profiles for the entire month, you will find a link at http://lcsmchat.com/profiles-in-lung-cancer/.
In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show you the many faces of lung cancer. Today, Naomi Farley is profiled at http://bit.ly/1PnCeYI.
In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show you the many faces of lung cancer. These are stories of hope and inspiration! Each day we will feature a different person on a different blog site. There are survivors, advocates, health care providers, and caregivers.
Today we find out more Bonnie Addario on Lisa Goldman's website: http://bit.ly/1LP8d1D.
November is Lung Cancer Awareness Month! Our group of lung cancer bloggers have gotten together to show you the many faces of lung cancer. Each day we will feature a different person on a different blog site. There are survivors, advocates, health care providers, and caregivers.
Tori Tomalia kicked off by profiling Melissa Crouse, a lung cancer patient and advocate. See the November 1st installation of our blog chain at http://bit.ly/1GWkIcB.
Today, Janet Freeman-Daily profiled Deana Hendrickson, former caregiver for her mother, and now long-time lung cancer advocate. Find out about Deana at http://bit.ly/1SkiGob.
Friends and Family,
Is it that time again already? Yesterday we met with my oncologist in San Diego for the clinical trial, and of course to get scan results.
It has been 13 months since I started on AZD9291. What a terrific run it has been! There was “massive shrinkage” – of the cancer – in the first six weeks of treatment, and then no change ever since. So it wasn’t a surprise when we met with my oncologist yesterday, and he told us…
The cancer has not grown! Yahhhhhhhhhhhhhh!
After the first few months on this treatment, I started asking the question that everyone in this situation wants to know: What happens when this treatment stops working? Every time we’ve had this discussion, Dr. Patel has waived his hands, smiled, and said, “You don’t need to worry about that. There are LOTS of options that will be available when you need them!”
That all sounds great, but I have been around this block too many times to bet my life on it. “Don’t worry, be happy” makes a great song, and it’s a great way to live your life, but it’s not the best way to approach treatment when your life is on the line.
I was particularly motivated this time because I have been watching my friend Craig, who is in the same clinical trial as I am. His cancer began progressing many months ago, and he hasn’t been offered a good alternative to chemo up to this point. I know that when I have been in Craig’s shoes, meaning each time a treatment has stopped working, all my careful, methodical thinking goes out the window and I get desperate to grasp at whatever treatment is in front of me NOW. The closest comparison for those of you without cancer would be job hunting: Doesn’t every job look a lot better if you are already unemployed?
So this time, I came in loaded for bear. MUCH more politely phrased than this, I told him that “it all depends” wasn’t a satisfactory answer. I told him that I KNOW we’re going to have to genetically test my cancer when that time comes to see what treatment might be best, but what does his decision tree look like?
He must have been expecting the conversation to take a turn in this direction, and he was happy to go down this path. He started out with those words of hope that are sooo encouraging these days: “If you asked me three weeks ago, I would have given you a different answer. There’s a new treatment that has just come out in clinical trial." That new treatment is a drug called EGF816.
Of course, I immediately started reading up about this third-generation targeted genetic treatment. It works well for EGFR mutations after T790M becomes resistant to treatment. So when AZD9291 stops working, the next generation is upon us!
Another option is to combine this third-generation drug with Tarceva, the first generation targeted treatment. You know how grandparents and grandchildren sometimes get along better than the sandwich generation does with either their parents or their children? Turns out it works that way for genetic mutations as well! This is exciting stuff!!!!!!!!
Dr. Patel backed me up a couple steps, though. He told me that the FIRST option isn’t to switch drugs, because when AZD9291 stops working so well, the cancer still progresses pretty slowly. The treatment of choice is likely going to be radiating a few spots in my lungs if they start showing a little growth. He called it “spot-welding,” which is pretty descriptive. So that is MORE good news: If/when my AZD9291 stops working so well, it will be slow and gradual. That buys MORE time for MORE options. I love it!
Another option will be to try immunotherapy – drugs that boost the immune system. At least one of them, Opdivo, is already on the market, and there are two others in clinical trial (Phase II/III). A good number of people who responded to AZD9291 and then went on Opdivo had fairly serious side effects, so we’ll have to weigh that option when the time comes.
Keep in mind that, up until a few years ago, no new treatment options had been discovered for five decades. Now, I have been on three new drugs that didn’t exist when I was first diagnosed nine years ago, and there are many more in development. This is all good news piled on top of good news as far as I am concerned. This is all great news, and it brings up something I’ve been happy to spread for a long time:
Now, where would you guess I found this sign of hope?
In my oncologist’s office, of course!
Love,
Dann
Come to the LVNG With lung cancer event in San Diego this Saturday, October 24th from 9 AM to 3:15 PM. It’s a chance for you and your loved one to connect with other people living with lung cancer. This interactive community event will offer emotional connections, insights, and shared experiences from people living with lung cancer. On a more intimate level, smaller discussion groups will talk about the specific needs of both people living with cancer and loved ones. To register, visit www.lvng.org/events.
Friends and Family,
Bragging is extremely uncomfortable for me, but I’m going to do it anyway. I have a purpose in mind. More on that in a minute.
Here’s my brag: When we moved my office to the top floor of our building almost five years ago, one of the guys started the Flight Club. It was a way to keep us motivated to walk up the seven flights of stairs to our office. He set up an Excel spread sheet that we could all access and use to track our steps. It kept a running count of the steps.
I’ve been climbing these stairs on average about twice a day. This week I just reached a personal landmark: I have now climbed more than 200,000 stairs. I reached this 200,000 step milestone despite having a second lung surgery, hernia surgery, radiation, chemo, back and hip pain that temporarily put me in a wheelchair, and month-long colds. I have also been working out at the gym 4-5 times a week during this entire time, because I believe that exercise is one of the reasons that I am still alive.
So here’s why I’m bragging: I want to motivate you. Whether you have cancer, other health problems, or even if you’re perfectly healthy, exercise matters. If I can do this when I am missing one lobe of my lungs, and have cancer in the rest of those lobes, maybe you can do some exercise for your health, too.
How many times have you heard on the news about research that shows that diet and exercise lead to better health?
I’ve been in book stores and libraries, and I’ve done my own personal survey of how many cancer books are about diet, and how many are about exercise. Here is what I found:
There are approximately 1,562,435 books on diet and cancer.
There are approximately zero (0) books on exercise and cancer.
Okay, I didn’t count the books. And unlike my steps, the number may be a bit exaggerated. Still. The point is valid. Lots of cookbooks, no exercise books. I’m guessing it’s because people find it easier to change what they eat than it is to exercise. Why not do both?
I found this even looking around my own house. We have three cancer cookbooks, no cancer exercise books.
I’m not alone in my thinking. For years the American Cancer society has recommended exercise to help with the emotional and physical side effects of treatment. Now they are even beginning to see that it impacts treatment itself. Exercise impacts tumors. See this article on their website: http://bit.ly/1STmPDj.
I hope this blog entry has done the job. Are you feeling motivated yet?
Love,
Dann
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
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 you have been diagnosed with cancer for any length of time, then no doubt friends or family members have forwarded information to you about miracle cures from alternative sources that the medical community doesn't want us to know about. Inevitably, the information includes a statement that the cure has been kept from the public because "cancer is too profitable to ever be cured. This question was responded to on a public forum by Dr. Jack West, who is medical director of the thoracic (lung) oncology program at Swedish Cancer Institute in Seattle. Here is his response:
"As someone who cares for sick cancer patients every day and sometimes at night as well, a demanding job that takes a significant emotional toll, I'll start by saying that although I know you are only one of many people who is cynical enough to think along these lines, the question is callous and betrays ignorance.
First, cancer is not one disease but many. In fact, many cancers are cured, and we have made great advances over the past several years and decades. I have many patients alive now who would have died had it not been for the efforts by my colleagues and myself.
Second, people who suggest that there is a cure for cancer available or readily attainable but not pursued because it's more profitable to continue the status quo have absolutely no concept how difficult an opponent cancer truly is. Cancer is cancer because it grows faster and better than the other tissues of the body, and its job is to mutate over time. That means that cancer cells throughout the body are not the same because they have different mutations, making some resistant to a treatment that is effective against many other cancer cells. Even if a treatment is effective against 99% of cancer cells, the remaining 1% of cells that are resistant can not only survive but grow and divide and repopulate to create a newer, more and more resistant cancer. This is exactly what happens in many cancers, which can have dozens and dozens of different mutations in a single cell.
Third, I find it puzzling why people who suggest a vast conspiracy to avoid curing cancer ignore the unfathomable financial windfall for the company or institution that actually cures it. If you could cure previously incurable cancers, a company/doctors could charge an unprecedented amount for the treatment, even if they didn't need ongoing treatment. I assure you doctors would rather cure cancer than watch patients they care for decline and die despite their great efforts.
This prevalent theory that cancer may be too profitable to cure is perpetuated by ignorance, like climate change denial. Unfortunately, there are always people who will abjectly refuse to recognize reality and continue to perpetuate ignorance. I hope that after asking the question and getting a cogent answer that you aren't one of them."
You can see more from Dr. Jack West at one of my favorite websites, http://cancergrace.org/.
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
So now you've seen just about everything we did in Hawaii: Gaze at the ocean, walk on the beach, and swim. Sounds pretty healing to me.
It's not always about cancer, is it? Sometimes it's just about living. That's why I'm not going to mention the "C" word again, for the rest of this post. I'm just going to show you pictures of our trip to Hawaii, even though it makes me want to go back. Right now.
Friends and Family,
Genevieve and I have had our sense of reality severely tested. Time, space, and sound have all been distorted.
Let's start with sound. Genevieve and I went to the same appointment together with Dr. Patel two weeks ago, and we both heard something very different.
Here's what I heard Dr. Patel say: "The good news is that your scan results look great and everything seems stable. However, OHSU compared these results to the ones you had nine months ago, so we really can't tell if there's any change."
Here's what Genevieve heard Dr. Patel say: "The good news is that you're still in remission." End of story.
How could I hear, "We really can't tell," while Genevieve hears, "You're in remission?"
I haven't heard the word "remission" from anybody except Genevieve for the last four years. When people ask her how I'm doing, she says, "He's doing great. He's in remission." I always took this as her affirmation, her imposing her intentions on the situation, her creating the reality that she wants to happen. Now, my doctor is teaming up with her to do this?
I don't know what to call it, or what he actually said. All I know is that I'm feeling great, my scans haven't changed, and we're going to keep celebrating.
OHSU had compared results from my CT scan, done two weeks ago in Portland, with ones done nine months earlier, also in Portland. The time in between, when I was having scans in San Diego, ceased to exist. The space/time continuum was then burst, as our UCSD (San Diego) radiologist said he would compare the last Portland scans with the most recent San Diego scans.
Next (I think), time moved backwards, as we waited for the results. Eventually time started creeping forward again, and we received Dr. Patel's email: "No results back from the radiologists yet, but I eyeballed your scan and it looks great." He eyeballed it? Did I just slip and fall into the rabbit hole? Since when do oncologists trust their eyeballs to compare scans, when they don't even have another scan to compare it to? How do we know he's not in some kind of spacial distortion?
Months later, in an email dated only three days later (proof of the time distortion), Dr. Patel emailed again: "CT of head and chest have been evaluated, and there's no change. Still looking great. However, we can't find the scan of your pelvis and abdomen to compare. Can you have OHSU burn another disc for you?" But before I even got to this email, time sped up and he sent a second email. "Never mind, we found it on the same disc. Won't be long now." Except it was. Very long. Weeeeeks (possibly hours) later, he emailed again. "CT of pelvis and abdomen have been evaluated. No change!"
Of course, with this great news, Genevieve and I went into a time loop and celebrated the CT results all over again. NO CHANGE! WOO HOO! TIME IS STANDING STILL FOR MY LUNGS!
Maybe we'll even celebrate by watching some 4th of July fireworks next week. :-)
Love,
Dann
Here's something that gives me a lot of hope: The Lung Cancer Alliance held their first annual Lung Love Run/Walk last Saturday in Portland. It turned out great. 500 people participated. That is great for the heart - and lungs!
My own team, Live Lung and Prosper, had 11 participants, and many others who donated. Thanks to all of you for your part in this!
Most impressive to me was Kathleen, who was diagnosed eight months ago, and the amazing amount of support she brought with her. Team Big Kat had 100 participants! That's a whole lotta love in one place!
Of course, there are pictures:
Look at all these lung cancer survivors!
Strong lungs!
Keep us in mind next year, and we'll make it an even bigger success!
Friends and Family,
Genevieve and I just got back from our latest trip to San Diego to see my oncologist. A few minutes into the meeting, we were celebrating like it was the Fourth of July. Now this is the first and only time in my life I hope to ever utter these words:
The fireworks went off prematurely.
Let me back up and fill in the missing pieces. Although making trips to San Diego for this clinical trial is a gift, it hasn’t been without stress. Every travel day, we get up at 3 AM to make sure we’re at the airport two hours early because you never know when the security line is going to take an extra hour. That’s what I’m told, anyway, and like any good husband, I listen. This is not the stressful part. It’s just the sleep deprivation part. Who am I kidding? Lack of sleep probably does add to the stress.
If we arrive on schedule, we have just enough time to take a shuttle to the rental car company, get a car, then keep all four wheels on the ground and watch for patrol cars while heading to the hospital for a tightly scheduled CT scan. There have been snags along the way, like the occasional late plane arrival, and learning the hard way that Firefly (Hertz’s low cost stepchild) has only one meandering shuttle bus. Being 15 minutes late for anything else doesn’t do this to me, but on that occasion I thought I would pop the blood pressure cuff as soon as I got to the hospital. Hey, I’m a low-key guy, right? Hang loose! It all works out in the end. And so far all these worries about being late for my scan have been for naught. Even the time when my scan was scheduled at one hospital but I showed up at their other location, they still they found a way to fit me in.
But there are more reasons than stress why this system has needed some fine tuning. Genevieve comes to these appointments in large part so that together we can discuss the results of my CT scan with my oncologist. But here’s the problem: The scan results have never been ready by the time we meet with my oncologist.
The appointments have turned into an anticlimax. I tell Dr. Patel I feel great, he tells me I look great, I ask about new research, and then Genevieve and I leave. What’s left to talk about, with no test results?
Sometime later that night or the next day, when the CT report is completed, Dr. Patel calls me with the results. I relay the news to Genevieve. This lack of face-to-face contact for something so crucial to my well-being leaves a critical gap in communication.
Finally, after nine months of this, I discovered that I could have the scans done in Portland, the day before I meet with Dr. Patel. Where’s the fun in that? Where’s the drama?
Call me a spoil sport, but I made the change. This time I had the scan here in Portland on Monday, and on Tuesday I carried a disk to San Diego with the images and the report.
Ta-da! We had the report ready when we met with my doctor! At last, we have better communication and less stress! And the report was great news! In short, the report said that I had massive shrinkage of the tumors. This was time for an instant party! Can you see the fireworks going off? It was time to celebrate!
But wait a minute… isn’t there something familiar about this “massive shrinkage” business?
Dr. Patel threw in his own “but.” The Portland radiologist was comparing this CT scan with the last scan I had in Portland, which was done last September.
The results were meaningless. They were comparing these results to my scan from nine months ago. Our celebration was premature.
Still, all three of us – Genevieve, Dr. Patel, and I – were in a great mood, because we’re expecting everything to continue going well. This is all based on feeling good, having no obvious signs that it’s getting worse, and ignoring a cough that suddenly got worse two weeks ago. That was too sudden, we all agreed, even though we were basing this on no real data. Never mind the facts – my mind is made up.
Dr. Patel said he would pull up the last San Diego images and compare them side by side with this last CT scan. I’m expecting his call soon... Very soon... Any time now... And I’m not thinking about it at all. Really.
When I get the more timely comparison, I know it won’t be Independence Day, because the new scan showed tumors are still present. Still, this apparently “useless” comparison to nine months ago has been a great reminder of just how much better I’m doing now than then. And “stable” is the next best thing to being cancer free, so I’m ready to celebrate a second time. Perspective is a great source of gratitude.
I hope you find plenty to celebrate in your life as well. With a little perspective, I bet you can.
Love,
Dann
Dear Friend,
There is so much I want you to know. Let’s get started:
1. Have hope. Cancer treatment is exploding right now. It’s just incredible how fast things are changing – for the better.
2. Finding out is the hardest part. The first days, or weeks, are overwhelming for everyone. You will get past this - we all do. Just remember that what you are going through right now is harder than everything else you will go through. Everything else combined. The reason? You don't have any tools to deal with it yet. That will change.
3. Let people in. My life is much richer and more full of love now than it ever was. That only came from sharing my trials and vulnerabilities. I have no doubt that I am alive today because of the love of, and for, family and friends. Rarely people vanished because they couldn't cope with my cancer, and I can understand this. Much more often, people surprised me with their outpouring of caring and love. Take the risk. Still it's easier if you...
4. Plan how you are going to share your diagnosis with others. I found that by emailing people I cared about before talking with them about it, it saved me from endlessly re-living those first moments after being diagnosed, after the cancer had grown, or spread, or didn’t shrink when I had high hopes. This gave friends and family time to compose themselves before they talked with me, and because of that, the conversations went much better. This way I could also set the tone that I hoped that they would reflect back to me. It works.
5. Throw the statistics out the window. If you've been diagnosed for longer than 12 hours, you have probably already done an internet search and tried to calculate your survival odds and/or your new life expectancy. Finding statistics that match your specific situation is nearly impossible. For example, the average age of diagnosis for lung cancer is 71. I was 49. Do you think treatment outcomes will be the same? General health, environmental factors, location/size/number of tumors etc. – there are too many variables to make the stats make any sense for an individual.
6. More importantly, whatever statistics you find are probably hopelessly out of date. New treatments are coming online too fast for the statistics to keep up.
7. A diagnosis is not a prognosis. I was at the LUNGevity HOPE Summit a few weeks ago with 150 lung cancer survivors. Most of us attending have, or had, Stage IV lung cancer, and a dozen have been alive for at least five years. If that's not enough, I am your living example. I was first diagnosed nine years ago. The same diagnosis yields different results for different people.
8. Do your homework. Your survival chances are directly related to the quality of the treatment providers you work with. Is your oncologist a specialist in your specific type of cancer? As a general rule, the more people that your doctor and your treatment center have treated that have the same type of cancer as yours, the higher their success rate. Experience makes a difference. Who are the recognized experts in your type of cancer that are within a radius that you are willing to travel?
9. Get molecular testing. The most promising breakthroughs in cancer treatment are at the molecular level. This includes both targeted genetic treatments and immunotherapy. If your oncologist doesn't think you need it, consider the possibility that your oncologist is out of step with the latest research. You may want a second opinion.
10. Re-think clinical trials. "Clinical trials" used to be considered the last gasp desperation approach to treatment. The reality is that, for lung cancer and many other types of cancer, this is where you will find the most promising, cutting-edge medicine, with the best results, and with the least side effects.
11. Exercise, sleep, and diet all make a difference. They impact your mood and your ability to cope. More importantly, you will recover from medication, radiation, and surgery better and faster if you are in the best shape you can be. Take care of yourself. Exercise, sleep, and diet. In that order. One man's opinion.
12. Attitude matters. Treasure the moment. Live in gratitude for what you have right now. Choose hope. These things not only improve your quality of life, they also improve your chances of living a longer life.
13. Love yourself. Treat yourself like you matter. Because you do. This may be your last chance to act like it.
14. Choose your own path. I’ve laid out the way I see it. You may see it differently. Find your own vision of the future, and own it.
If you are newly diagnosed, I wish you the very best in your journey. Contact me if you would like. If it has been some time since you were diagnosed, I welcome your comments.
Love,
Dann
These are images of hope that never crossed my mind without your help. Steve and Violet sent this photo of their new grandson, Luke. What says hope better than new life?
Proving that you don't have to be a baby to be the embodiment of hope, Marje sent this photo of her grandson, Zan, "who is all about hope."
Finally, this living taste of hope has been on my refrigerator for months. Meet my niece Melissa and her fiance Pete. Can you see the hope (and love) in their eyes?
Before I could even post this, Steve and Violet came through again. Meet their newest granddaughter Katelyn. And yes, she really was born yesterday.
Thank you to all for sending these images of hope. They're doing the trick! I'm feeling more hopeful with each new image. I hope this is doing the same for each of you as well.
