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
Distortions of Space, Time, and Sound
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
Independence Day Came Early
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
Busting Loose from Treatment - February 20, 2015
Friends and Family,
I’m so excited about this I can hardly contain myself. After approximately 1,347 trips to San Diego since September, Things aren’t going to be the same. My ratio of TPW’s is dropping dramatically. But before I tell you about my TPW ratio, I think some explanation is needed.
I was very proud when my mother, at the age of about 40, decided to go back to school. She entered a program at Marylhurst College (now Marylhurst University) that gave her credit for life experience. She had to challenge each course and prove that she knew the material through life experience. After six months of challenges, she was halfway through her junior year. She completed her degree by attending regular classes, and then went on to get a Master’s degree to boot.
I think I should follow in my mother’s footsteps and go back to Marylhurst. At least, I should do this if Marylhurst has degrees in fields related to medicine. After 35 or 40 CT scans, a handful (or two) of MRI’s, and a course of radiation treatment, I probably have enough experience to qualify as a tech. I’m also one of the few people you will meet who has seen his own skeleton, after having a full-body bone scan done a couple of years ago. Kinda freaky, that one. I wish I would have asked for a print of that scan, so I could have blown it up to poster-size and hung it up at Halloween.
I should also be able to qualify as a phlebotomist.
I know, the name is similar, but it has nothing to do with lobotomy. You may assume that I have had one of those if you have spent a lot of time talking with me, but I haven’t. You can tell because my sprch habent bin affectected.
Phlebotomists are the people that draw your blood. I have had blood draws between one and 514 times per month. A couple of times in a row the same phlebotomist hit a nerve. I jerked so hard that she jumped back, pulling out the needle and leaving my blood spurting. While it was colorful, only Genevieve could have appreciated all that red. Fool me once, shame on you. Fool me twice, and my arm still hurts. Twice was enough. Having learned from when I had a “port” in my chest for chemo, I knew there was an easy way around this. When I had a port, my doc prescribed “port cream” (lidocaine) to numb me at the injection site.
I don’t know why doctors think the needle should hurt in your chest, but not in your arm. Especially after repetitive repetition, over and over again. I was having none of it. Being naturally pain avoidant (AKA a wimp), I asked my doctor to continue prescribing the port cream for me. Now, an hour before I get poked, I apply the cream. Problem solved. I don’t even feel the needle going in. Phlebotomist qualifications? Check.
Of course, I haven’t mentioned the doctor appointments. Which (witch?) doctor, you may ask? There are plenty to choose from. I have my San Diego oncologist for the clinical trial, my OHSU oncologist that I see before I get my monthly bone strengthening (Xgeva) injections, my psychiatrist (what, you thought I was this Specimen
of Psychological Stability all on my own?), my physical therapist, and my back pain management doc. That’s not counting routine appointments to other docs for ingrown toenails, diabetes, and occasional skin weirdness.
I have spent more time in doctor’s offices than I have in Starbucks. I should at least be qualified as a Barista of Medicine (BM). I know you haven’t heard of a BM before, but that’s only because you haven’t spent as much time in doctor’s offices as I have. I know a lot about BM’s.
Back to how my ratio of TPW’s is dropping. That’s the number of Treatments per Week. Now that the cortisone injection in my back has fully kicked in, I don’t have to see the pain management doc again, and my physical therapy appointments have dropped to once every other week. All the other body parts are working right now (watch it), so there are no other extra appointments. The only remaining appointments are with oncologists. THAT is where the joy is really kicking in!
We just got back from San Diego Tuesday night. The news was – again! – excellent! My CT scan showed no growth! I was ruminating a little before this trip since the last scan showed a little growth in one spot, but there was no growth this time. Everything is stable! Not only that, but I have progressed to a new milestone in the study. From now on, the trips to San Diego are once every six weeks instead of three.
Freedom! Half as many trips to San Diego, half as many trips to my physical therapist, and no trips to the pain management specialist! I love my new TPW ratio!
Now that I have a little of my time back, let’s meet up for coffee. How about Starbucks?
Love,
Dann
Patience: Be the Bear - February 4, 2015
Friends and Family,
Remember how I had an Attack of the Whinies the last time I wrote? It was partly about my back, and partly still feeling grumpy about my last CT scan, which showed one little critter shrink… while another one grew.
What Dr. Patel said: “Your cancer is stable.”
What Mister Rabbit Ears heard: "One of the mutants found a way around AZD9291. Your lung spots are expanding faster than urban sprawl.”
Yes, that’s one small step for man, one giant leap for Dann’s disaster-focused imagination.
However, my mood has been improving since last week, when I asked Dr. Patel to explain how he could call the last scan stable.
“Pshaw! That spot that grew was so tiny, it’s probably just an odd speck of non-cancer! Even if it does turn out to be cancer, it’s isolated, so we’ll just give it a few zaps of radiation and put it out of its misery. It’s not an army, it’s at most one stray soldier.”
Okay, so those words aren’t exactly what he said, but close enough. I’m calmer now. Really.
My mood is improving even further because of progress with my back. Pit bull determination paid off, so I got a cortisone injection last Friday from Dr. Payne (Dr. Mark Kallgren). I just couldn’t tell how much it paid off until I went to my PT today and found out how much better I can move. I should get the full cortisone effect between now and next Wednesday. Here’s hoping the progress continues, because, well, I need to take lessons on patience from the bear.
Time to start meditating. Be the bear.... be the bear...
Love,
Dann
Sunlight and Ducks Make Pretty Good Cures January 10, 2015
Friends and Family,
First, I want to share a memorable vacation with you. It was pure joy. Genevieve and I went to Palm Springs with her twin sister Charlotte and my best friend/brother-in-law, Lorin. With a refreshing lack of pre-planning, we spent a day in Joshua Tree National Park (extraordinary), hiked in the Whitewater Preserve (gorgeous), and Lorin and I took a guided tour of the 3,200 wind turbines in the area (fascinating). We also made a spontaneous trip to the Rose Bowl in Pasadena. We bought discounted tickets from scalpers at the gate. If I could beat cancer the way the Ducks demolished Florida State, I would never have to worry about cancer again in my life! I can’t ever remember having a vacation that was so much fun! Of course, I have an advantage in the fun department. I have laser focus on making the most of every moment. “Live like there’s no tomorrow” turns out to be a pretty good motto.
On to the real news. On Tuesday I had my latest CT scan, and the news is good. The cancer is stable.
So after all the enthusiasm for the vacation, why the lack of enthusiastic excess about stable cancer? Because after the last CT scan six weeks ago, when the cancer had shrunk 60-70%,
I was getting spoiled. I was hoping for a continuing trend that would lead to being cancer-free. I even dared, for the first time since I was re-diagnosed three and a half years ago, to dream that I was on the verge of becoming cancer-free. The bigger the dream, of course, the bigger the crash if it doesn’t come true. Still, I consider it a sign of growth that I would rather risk the dream than try to be numb and lose out on the joys of experiencing a full life.
There were a couple of asterisks that came with this “stable” report. The first is that there were more leopard spots (“sclerotic lesions”) on my hip bones. The radiologist again called it possible cancer growth, while my oncologist again said he thinks it means that the cancer is further dying off and leaving little pockets behind. “The best indicator is that you don’t have any pain in your hips.”
I don’t know what you think, but I’m going with Dr. Optimist. Also, I want to thank Tori Tomalia for reassuring me that she had the same experience, and that all went well.
Tori has an outstanding lung cancer blog, by the way. See http://lil-lytnin.blogspot.com/.
The second asterisk in this CT report is that, while overall my lungs are stable, one spot grew and another shrunk. (“Spot” sounds better than “tumor,” don’t you think?) My best guess is that the ADZ9291 is attacking the genetic mutation it was designed to attack, but since I have more than one mutation, it may not be impacting the other mutants.
I finally found out how AZD9291 works. The cancer disguises itself to hide from my immune system. It puts on a fake beard and sunglasses and tries to blend in with the crowd. AZD9291 unmasks the cancer, so the hero of this story, my immune system, can attack it. What I take from this is that, with cancer, just like with politics and relationships, sunlight is the best disinfectant.
Now that I know this, I’m asking for your help again. In the past I asked you to “think dried prunes” to shrink the tumors. I believe that is one of the things you have done that has kept me alive. This time I’m asking you to help with something that works like AZD9291:
Think of sunlight shining in on each of the little spots in my lungs, hips and spine, and let that sunshine fry each of the little critters.
If you have a photo image of sunlight doing this, I would love it if you shared it with me. I’ll post it on my blog, so that others can benefit as well.
I hope your year is starting out as good as mine.
Love,
Dann
Never a Dull Moment December 3, 2014
Friends and Family,
Genevieve and I are back in San Diego again, for all of the pokes and prods, scans and samples that are part of this latest three-day trip. We were tense waiting to hear the results from my CT scan, which was completed yesterday. It's the first one since I started taking AZD9291. By noon today we were in full "scanxiety" mode, still waiting for results five hours after we got to the hospital.
We also had a new concern. Over the past five days I have had pain in my lower back that was shooting down my right leg. I had the same pain in the same place exactly one year ago. It got bad enough that I was in a wheelchair on a few occasions (airports, OMSI with the grandkids, and other events that required a lot of standing) over the course of a few months. Dr. Patel made sure the scan covered that area so he could find out if the cancer spreading.
One of the staff decided that we shouldn't have to wait any longer, so in between EKG's she gave us the Cliff's Notes version of the reports. It was decidedly mixed. The report for my lungs showed some shrinkage, but the one for my hips indicated that there were a few new lesions.
This wasn't what we were hoping to hear. What did it mean that it was growing in one place and shrinking in another? My mind was racing, thinking about getting my affairs in order, and treatment alternatives - all the familiar ruminations. Genevieve was true to her own way of coping under stress, as she withdrew into a blank stare.
We had seen Dr. Patel before my scan yesterday, so he planned to release the results today, but not to see us again. After the report we had just seen, that was not going to work. I pushed to have the doctor see us.
I'm glad I did. When he popped in a couple hours later, he was all smiles. He pronounced the results a total success.
He said that what appeared to be new cancer spots on my bones was actually the cancer dying in those places, which made them easier to see on the scan. His complete confidence and experience with similar results was enough to convince us!
He also elaborated on the lung scan. Many of the countless baby tumors had disappeared, and many of the others were smaller. The biggest one shrunk from 24mm down to 7mm. Overall, he said the cancer had reduced in my lungs by 60-70%. YEAHHHHHH!!!!!!!!!!!!!
I have a new favorite oxymoron now: "Massive Shrinkage!"
Now, about the lower back problem. It is not cancer. He thinks it may be a slipped disc or similar, something that should be treatable with a cortisone injection or similar. He said an MRI should define it more clearly. That sounds much better than either cancer, or the "torn disc" that it was (mis?)diagnosed as last year.
Let's see... Shrinking cancer and a back problem that may be easily treated?
I love the holiday season. Today was a little bit Christmas and a lot of Thanksgiving. There is a lot to be grateful for.
Happy Holidays!
Love,
Dann