Counting My Blessings + CAT Scans May 8, 2014

Friends and Family,

Genevieve and I went to see my new oncologist today, but there were no new CAT scan results to go over. That will happen next month. HOWEVER…. I’ve been talking about these CAT scans for eight years, yet never showed you what they look like. Even if you THINK you know what they look like, and even if you have HAD a CAT scan, you will be surprised! Follow the link http://dannscancerchronicles.blogspot.com/ This will give you an entertaining look at how they REALLY work! I can guarantee that you have never seen this before! This should be on NOVA!

What really struck me from today’s appointment was getting the same message from three different people at the clinic. All reminded me how very fortunate I am to still be alive, and all told me in their own way just how rare this is.

First, my new oncologist told me that it’s great to have patients like me, because doctors “need a win every now and then.” He’s happy that not only am I physically doing well, but that I also have great quality of life and a great attitude.

Next John, the nurse’s aide that I have been seeing at the clinic since I was first re-diagnosed (2 years, 9 months ago) told me that it was great to see me… because I’m still alive. He was more tactful than that, but that was the gist of it. He was very surprised when I reminded him that I was first diagnosed five years before I came to OHSU.

Finally, a new nurse came in the room and reviewed my chart before my bone-strengthening injection, and was surprised to see how long I have been coming to OHSU. She said that they don’t get many people that have been coming for that long, let alone still looking healthy.

This is another great day to count my blessings. This includes you, my friends.

Love,

Dann

PS: Go see the CAT scan pictures! http://dannscancerchronicles.blogspot.com/

Genevieve's Healing Art #1

Genevieve has been doing everything within her power (and then some!) to help me beat this cancer. One of the things that she has done is to create a series of artwork. I will add these to my blog on a fairly regular basis.

Here is what she says about her art:

"My art is greatly impacted by the energy of healing it can impart to the viewer. I believe intention and symbology can awaken the “chirotic point,” a place where the optic nerve interfaces with the brain and the subtle properties of healing energy are perceived and received by each cell in the body."

.....................

The first series of artwork I completed during the long hours in the chemotherapy clinic. Each session was a full day affair. Dann was in Chemo from the end of August to December.

I started the series with the intention of having artwork in our daily environment that would give subtle healing messages. Each series of 6 pieces of work represented a piece of the healing process.

#1-

"Green representing the heart energy . The orange circles are the mutant genes leaving, kicked out… by the strong green resilient energy of the high heart."

More Reason for Hope on the Lung Cancer Front!

What a beautiful time in history we are living in. Tarceva didn't even become an approved treatment until two and a half years ago. Last July another drug similar to Tarceva that may be even more effective (afatinib) was approved. See https://www.boehringer-ingelheim.com/news/news_releases/press_releases/2013/15_july_2013_oncology.html.

Thanks to Craig http://craigblower.wordpress.com/ for sharing even more hope for the future of treatment with Tarceva! For most people the cancer eventually finds a way to build resistance to Tarceva, but some angels disguised as medical researchers have found a counter-punch. See http://www.utsandiego.com/news/2014/apr/20/cancer-velcade-cheresh-seguin-ucsd/ for the good news.

After decades of no change in survival rates, now it's hard to keep up with all the really positive news that is coming out of cancer research.

What a great problem to have!

Hope

Friends and Family,

On the North Shore of the island of Oahu, in the town of Laie, Genevieve's grandfather bought a chunk of land back when he was a young man. I'm sure that a few eyebrows were raised when he paid $2,000 for a sand lot in the middle of nowhere. But her grandfather, "Pop," was a man with hope, and he pursued his vision regardless of what other people thought. After WWII he moved a Red Cross infirmary shack onto the property, and then converted it into a home on this isolated beach.

Gradually others discovered that this was one of the best swimming beaches on the island. Later catamarans, kayaks and wind surfers showed up, along with a few surfers. Over time it started looking like Pop's hopes were well-founded. This place was Paradise.

When they were little girls, Genevieve and her sisters used to visit her grandparents at what the local Hawaiian family members still call the "country house." On these visits, their mother would take them on five-mile beach walks to the Point at the end of the next beach, near Kahuku.

This is a beautiful beach with blue and aqua marine water, a gentle surf, and lots of sand. At the Point there is a massive rock that has been there for many thousands of years. When the girls got to the Point they would race to be the first one to make contact with that touchstone. Year after year they came back to the islands, and the daily beach walk to touch the rock became tradition.

By the time I came onto the scene 19 years ago, Genevieve's grandparents had long since passed away, and so the beach house had become a shared family property. Genevieve introduced me to this family home, and to those wonderful early morning beach walks. It wasn't long before the walk, and touching the rock, became part of my tradition too.

Often when we get to the Point and touch the rock (she still races to beat me to it!), we stop to reflect on what a gift this place is. The gratitude and appreciation that the entire family have shown for this family resource (especially since the house was rebuilt) comes up so often that it has become almost a meditation.

Has someone ever asked you to stop and take a moment to think about the most beautiful, serene place in the world that you know? When I am asked that question this place is where I go, and the walks on the beach are an important part of it.

That's what made it so difficult last September, when the cancer had spread to my bones. The pain was too severe to walk for more than a couple of blocks, so each morning I waved goodbye and watched Genevieve disappear down the beach. I wondered if I would ever be able to take that beautiful walk and touch the rock again.

I wondered if this would be one of the hardest of many goodbyes that I would be facing over the coming months. I had started on the "wonder drug" Tarceva several months earlier, but it hadn't touched the bone pain. Even though the cancer wasn't growing any more, the bone pain left me low on hope. Regardless of the scan results, my body was telling me that this was only a stop-gap measure before things got worse.

Not long after that trip, I started radiation for my hips. Over the course of just a few weeks the pain in my hips disappeared, and my spirits started lifting again. However, just before I went in for my final appointment with the radiologist, I tore a disc in my back. It again left me unable to walk for more than a few blocks due to a new pain. It was originally misdiagnosed as arthritis, which sounded permanent to me. Still, I had just enough hope to follow doctor's orders and start physical therapy.

Gradually I started getting some relief. Two months ago I told my therapist that I had a goal. I wanted to walk five miles on the beach and be able to return to the Point again in April. "No problem," she said. "Just keep doing your exercises every day."

Talk about motivation! I kept up those exercises, and now I am back to my regular gym and stair-climbing routine again. I was NOT going to let a few exercises stand between me and the Point! Finally, the disc healed enough so that I am pain free.

All of this leads up to our April trip to Laie. The first morning we woke up to the sounds of roosters at sunrise, then jumped into our swim suits and tee-shirts and set out on the beach. Frequently checking in with myself about how my hips and my back were holding up, my excitement grew as we took in each new part of the beach scenery.

When we finally reached out and touched the rock, tears welled up in my eyes. Genevieve's eyes seemed to have a little extra sparkle too. We took in what this long beach walk meant. I was not only surviving, I was thriving! Doors were opening again!

We pulled together for a long, heartfelt hug. Touching this rock here with Genevieve meant the world to me.

This journey reinforced what I already know, but seem to need to keep re-learning anyway. Pop didn't seem to need any reminders, but I certainly do. It was pretty simple:

Never give up hope.

And you wondered if there was going to be a Point to this story.

Love,

Dann

The only one here that needs any explanation is the photo of me with the glass ball. Yes, I found it on the beach! My first one ever! A positive omen at just the right time... I'll take it!

Superstitious? Check. March 16, 2014

Friends and family,

Wow, did I miss the target! Two weeks ago I wrote and told you that my next scan would be in a couple of months. A week later I looked at my work schedule and saw the CT scan scheduled... two days away! Where did those other two months go???

Did this mean that I was taking for granted the time that I have? Am I not appreciating each day enough? Or maybe it's a good sign that I'm staying in the present? My brain has been working overtime on this one for the past few days. If you've been around me during that time, this will explain where that burning smell came from.

You're getting a very small sample of the rumination that goes on about what it takes to "do it right". There is an almost magical believe that if I find the secret formula, it will keep me alive. I must have my mantras, I must have my mantras...

You can see this happen with professional athletes all the time. A baseball player's career hinges on his batting average. If he gets four hits in two games, and he hasn't shaved, he might just not shave again until he has a game without a hit. I'm betting you've heard more than one story about a pitcher who won't wash his "lucky" socks until he loses a game. I've watched pro basketball players place a hand on the sole of each shoe each time before shooting a free throw.

So what do I have in common with professional athletes? Other than that they are athletes, got drafted, and have talent???

More than you think! First, the stakes are high for all of us (though I will claim victory in the higher stakes contest). Next, we're all trying to control things that are at least partially out of control.

A great three-point shooter makes 40% of his shots. A great batter gets a hit about 30% of the time. And a Stage IV lung cancer survivor... Well that's a stat I'm not going to look up. Probably ever. Call it superstition.

Going through treatment, of course, is within my control. But all the other factors that impact survival have not been studied to any extent. I treat each of them as if they are critical to my survival, without knowing for sure if any of them really have an impact.

At least I know I'm not alone in this one. Genevieve has her own routines to keep me alive, other people I know with cancer do this, and other people I know who had cancer in the past are still doing this. We make our own mental list, like a pilot's pre-flight checklist, and the stakes seem almost as high. We hang on to this list for dear life. Forget to check your wing flaps and your plane may just fly off the end of the runway.

So here's my own personal, customized, different-than-anyone-else's pre-flight checklist:

• Positive attitude? Check.
• Taking in the love and support of friends and family? Check.
• GIVING love and support to friends and family? Check.
• Appreciating each moment? Check.
• Finding the gifts in every situation? Check.
• Exercise? Check.
• Diet? Semi-check. (umm, the mochas and ice cream may not be on the plan.)
• Having fun? Check.
• Keeping perspective? Check
• Taking time to reflect? Check.

Now that I've shared my checklist, I've held back long enough. Time to share the news with you. On Thursday my oncologist gave us the results of my CT scan. The cancer is stable! Three more excellent months!

Gratitude? Big check!

Now I have ninety more wonderful days of living in the moment, doing what I'm doing that I think is working for me, ticking off my checklist, over and over.

I just have one favor to ask of you. Cut me a little slack if my socks start to smell.

Love,

Dann

Clueless! March 2, 2014

Friends and Family,

Have you ever read stories or seen movies where the Native American tracker is called to some wilderness location to find someone? He looks around, sniffs the air, maybe drops a couple of blades of grass to get wind speed and direction. Then he walks a few steps, and sees a pebble on the path. He looks at the pebble and says, "They came through this way within the last two days."

The brilliant tracker sees things that the rest of us mortals miss. For example, that the pebble was from rock that doesn't come from this area, and that since it rained three days ago and there is no mud on the pebble, it hasn't gotten wet.

I am not a Native American Tracker. Never mind the pebble, sometimes I miss the billboard sign for the freeway on ramp. I trample clues, I don't find them.

This tracking of clues is a skill that I wish I had, because I would have a much easier time reading the signs of what is happening to my health. In the past the cancer has grown when I thought it would be stable, and has been stable when I thought it had grown. Last year I had a sharp mid-back pain and was pretty sure it was cancer in a rib. My doc ordered an X-ray, and I felt a bit foolish, because it was nothing.

At least it seemed like nothing, until I had a routine CT scan a month later. This more precise scan showed that the rib had cancer after all. I was wrong in accepting that I was wrong the first time.

I went through this again in December when lower back pain led to a CT scan within 24 hours of calling my doc. (With my history, I think a bad case of hiccups would lead to a CT scan at this point.) The pain was diagnosed as arthritis in my back. This was baffling to me, because there was sharp pain and sudden onset. That didn't sound like arthritis to me, but I wasn't the radiologist. I'm not even a tracker!

Fortunately, they referred me to a physical therapist (PT), which was even more puzzling to me as an approach for dealing with inflammation in the bones! But again, who's the doctor-tracker here? I'm much closer to Inspector Clouseau than Dr. Kildare.

The PT did her own diagnosis based on which ways I could move without hurting, and said it was a torn disk. That made more sense to me. Better yet, treatment based on this has been very effective, so I'm buying every word of it. After two plus months in a back brace, parking in handicap zones ("playing the cancer card," I called it), and a few outings in a wheelchair, I'm now back at the gym lifting weights, doing core exercises, swimming, and shooting errant 3-pointers with abandon. The world looks pretty spectacular again! Except.....

Except for The Cough. It's been getting worse the last couple of weeks. But what does it mean??? Is it part of this cold that I've had for the past couple of months that has waxed and waned? Or is it a sign that the cancer has grown in my lungs again?

There are two ways that my oncologist tells me that we can tell if the lung cancer is growing. One is with CT scans. The next scan is a couple of months out. The other way is based on the following three questions: 1) How are you feeling? 2) Has it been harder to breathe lately? 3) Have you been coughing more lately?

Now, assume for a minute that you have a chest cold. 1) How are you feeling? 2) Has it been harder to breathe lately? 3) Have you been coughing more lately?

You see why I feel so clueless right now? I don't KNOW how I'm doing. I don't know if Tarceva has run its course and I need to hurry on to the next treatment before the cancer gets a bigger foothold, or whether I have a cold.

It reminds me of a scene from the comedy RED ("Retired Extremely Dangerous"). A frail-looking Morgan Freeman is escaping the nursing home to join his fellow ex-spies in one last mission. He climbs out and sits on his window ledge, closes his eyes, and lets go .... dropping about three inches to the ground.

So with this cough and heavier breathing, am I in for a Morgan Freeman-type drop? Or is this a real-life multi-story drop? Don't ask Inspector Clouseau - I'm clueless!

This stuff comes up frequently. Here's another recent one: I had a headache three days in a row. Does this mean the cancer has spread to my brain? To paraphrase Freud, sometimes a headache is just a headache, but the real answer is that I don’t know.

You may be wondering, “How do you deal with it when you never know how long you’re going to live?” That is the question!!!

Genevieve and I have both thought about this a lot, and have come up with the same answer. We handle it by staying in the present.

We do our best to think about how special today is. When I hold Genevieve, it feels like the greatest pleasure in the world. A good cup of coffee is a wonderful treat. Moments with friends feel that much more special. Stopping to smell the roses isn’t just a metaphor – It’s a reality. A sunny day – or hour – is cause for celebration. A walk outside in almost any weather feels like a gift. Watching my granddaughter Caitlin in a Hula show feels as special as a once-in-a-lifetime event. Even though we have seen her shows for the last nine years, we’re only seeing THIS show once, and she will never be 14 again.

It’s much, much easier to treat each moment as special when you’re only thinking about today.

You may not be as clueless as I am, and it may not matter as much if you are, because life and death are probably not hanging in the balance for you right now. I hope this lack of a sense of urgency for you doesn’t deprive you of the gifts Genevieve and I have been able to receive from doing what she calls “staying on the page of today.”

I hope you have an amazing today. After all, it’s the only day you can live in.

Love,

Dann

90 More Reasons for Gratitude January 18, 2014

Friends and Family,

We got the results from my latest quarterly CT scan on Thursday. I had the scan nine days earlier, but my appointment was rescheduled for a week later due to a schedule conflict for my doctor. Usually the time between having the scan and getting the results is the most anxiety provoking time of all, because SOMEBODY knows if the cancer has grown, but it’s not us! Other people with cancer have referred to this as “scanxiety”, which seems like the perfect word. Genevieve and I have lost sleep and been preoccupied many, many times leading up to these appointments.

But this time was different. Even with nine days to wait for the results, I didn’t give it more than ten minutes of thought. My breathing didn’t seem to be any different, and until I got a cold I hadn’t been coughing any more than usual. (The cold was a killer that has lasted for two weeks so far, but “killer” turns out to be a very relative term!) Genevieve was also less concerned than usual. Every night she listens carefully to me breathing after I fall asleep, and she has been reassured by the lack of congestion.

Since I’ve left you hanging this long, you’ve probably already guessed that the results were excellent. There was again no growth at all in the cancer!

I want to put this in perspective. The only reasons that people go off Tarceva are because of side effects (rare that they get that severe), or because it stops working. The average length of time that people remain on Tarceva is eight months. It has now been nine months for me, and it’s still working perfectly. I have to believe that all of your love, and my own good attitude, are big parts of why it’s still working so well. And I’m even more grateful, because I’m now in the “bonus round,” beyond the average time of effectiveness.

That is only part of the perspective. There is more. I have been alive and doing well for seven and a half years since I was first diagnosed. I am way, way ahead of the survival statistics. During that time, I have lost two friends as well as my cancer mentor to cancer. I have also lost my young nephew to an accident, and my stepfather (such an inadequate word for someone I loved so much) to Parkinson’s Disease. Things happen, and people die. I have mourned their passing, while at the same time being all the more grateful that I am somehow still alive.

I have seen the hopeful side as well. Genevieve’s twin sister Charlotte has survived breast cancer – twice! – in the last 15 years. And my brother Matt’s wife Vicki has survived three different, unrelated forms of cancer, all within the last twelve months! Both of these remarkable women have positive attitudes, both do not consider cancer to be a part of their identity, and both are cancer-free. My sisters-in-law are giving me great hope and inspiration!

I met someone recently who is going through cancer and is at an almost identical stage of treatment as I am in. He asked me what I was doing to research future treatment options. I told him I was doing nothing! He looked completely surprised. “Aren’t you checking out every option? You have to be your own best advocate. You can’t rely on just one doctor’s opinion.”

That’s when it hit me how much this journey has changed me. I realized that I started out with that perspective. I armed myself with survival statistics and alternative therapies, all of which made me worry even more about when the then-current treatment was going to fail. Now (or at least most of the time) I live for the present and don’t worry about what the next step will be. I trust that if or when the time comes, I’ll have enough time to do the research, get second opinions, do anything else that I need to do. For now, living in the present is just right. And more than occasionally I look to the past, realize just how fortunate I have been, and have another reason for gratitude.

In fact, I have had 90 more days with no change in the cancer, which is 90 more reasons for gratitude.

If you will, please take a moment and think about those you know with cancer or other serious conditions, and send some positive thoughts and/or prayers their way today. Special thoughts today for Vicki and Charlotte.

Love,

Dann

Checking Out A Fellow Traveler January 9, 2014

While I was in San Diego I just happened to be surfing the web for some inspirational cancer stories, and ran across a blog that lifted my heart and tickled my funny bone. It also made me jealous of his graphics skills! Batman and Rocky Horror Picture Show? I just figured out how to add plane old pictures! You can check him out at http://craigblower.wordpress.com/.

In reading his blog I discovered that he lives in San Diego. How convenient! I contacted him, and we had a chance to meet for coffee before I returned to Portland.

The similarities floored me. He has the same type of non-smoker's cancer as me, he's been on Tarceva for almost exactly as long as me, and he had radiation to his hips a few weeks after I did. He's just a few years older than me, and values exercise to stay healthy... like me. This is the first time I've found anyone that was in similar circumstances to mine.

This last similarity is irrelevant, unless you're me: He just went through a kitchen remodel! Ours is just getting started:


We're adding new cabinets, new countertops, and not surprising to anyone who knows Genevieve, a wild backsplash of colored glass tiles semi-randomly arranged.

So Craig and I can swap tips on home remodeling, radiation treatment, Tarceva rashes - All the good stuff to build a great relationship!



Feeling like a Celebrity January 2, 2014




Friends and Family,

Between Christmas and New Year’s Genevieve and I went to San Diego to visit her 97 year-old father. Walt is a great guy, a former captain of industry-type with rock solid values. One of Walt's values is common-sense thrift, like not buying a new car when the old one works just fine. That's why he is still the original owner of a 1951 Woody.

About ten years after marrying Genevieve, I finally passed some secret test of either character or marital longevity, and Walt deemed me worthy to drive this beauty.

It has been an experience like none other. Just driving down the road in this purring machine brings smiles to the faces of complete strangers, and is guaranteed to start conversations any time the car rolls to a stop. The one-car parade has just come into town, and as the driver, it's easy to feel like a rock star.

Walt also has a second car. He is the original owner of a 1986 pale green Chevy sedan. This one is not so classic. Walt estimates that it has about 400,000 miles on it. It was "totaled" once, but Walt decided it was more cost effective to repair it than to take the insurance money and buy another car. Not that anyone else agreed with him, but who was the captain of industry in this room?

It has only one rear view mirror, and you have to yell a little to talk over the engine noise. I keep checking to see if I've left a door open because of the loud wind noises, but I finally figured out that it was just that the doors don't fit so well any more since the car was totaled. I found the emergency brake pedal lying on the floorboard, and the paint is faded.

All these limitations aside, Walt set the record straight. We were joking about this car the other night at dinner, but Walt was having none of it. He looked me square in the eye and said, "It runs well, doesn't it?"

I had to admit he was right. That car deserved my respect. Every time I have borrowed it, the car has been completely and unquestionably reliable. You have to admire how the darn thing just never gives up. It may look like a heap, but that beat-up old Chevrolet Celebrity just keeps on running.

Yes, that's right. I feel like a Celebrity. Not the rock star driving the classic Woody, but that beater Chevrolet Celebrity car that never gives up.

I've had more of that Celebrity experience over the past few weeks. I've been having temporary back problems that have almost no connection to the cancer, but which have left me feeling instantly (and temporarily!) a whole lot older and a whole lot more beat up. I'm wearing a back brace, and I have had to use a wheelchair on a few occasions (taking my grandkids to OMSI, getting through the airport) where I would have had to stand for too long.

Again, this is a temporary inconvenience, and I definitely don't want sympathy. I'm doing physical therapy, icing, massage, yadda yadda. It will get better. But when I look at the laundry list of things that have happened to this old beater body lately, I started to wonder how many more parts I had left that could fall off.

Then I took the Celebrity out for a drive, and I realized how much we had in common. Anyone can look at either one of us and say, "How can that body still be on the road?" It defies all logic. In either case, it doesn't matter. It works.

So my friends and family, I may look and feel more like a Celebrity right now, but I have a mission. One day I plan to grow to a ripe old age and turn into a classic Woody.

Have a healthy and happy New Year!

Love,

Dann

"No Pity" with my Brother Mike - Summer 2013


Although the "No Pity" slogan couldn't be more perfect for how I feel about dealing with cancer, this scarf is regular Portland Timbers fan gear. My brother Mike bought it for me before the game where this photo was taken. The Timbers of course couldn't lose this game with a slogan like that!

I've Got That Certain Glow About Me November 6, 2013

Friends and Family,

If you have noticed an increasing spring in my step over the past week, there’s a very good reason. It’s because it feels good to walk again. The radiation treatment is working!

I just had my tenth and final weekday treatment in two weeks, and it has gone pretty smoothly. Each time was pretty much the same: They had me lie on the table with my legs and head in molds to keep me in the exact same position. Then they lined up my tattoos with the laser crosshairs and left the room. I got zapped for 15 seconds on one side. When that side was cooked, the machine rotated 180 degrees and zapped me from the back side, through the table. That's it. No pain, no buzz, no anything. I wouldn't have even known I was getting zapped if the white light hadn't flashed in the corner of the room. There was almost nothing to it.... at least physically.

The big challenge wasn't pain, it was modesty!

Each time I went into the treatment room with the radiation techs, I stripped down to my underpants. The curtain to the hallway was usually mostly closed, though a few times I gave it an extra tug. I was a bit under-dressed to be making new friends in the hallway.

The first time I lied down on the treatment table, I followed instructions to lower my shorts to just below my pubic bone. Since the tattoos are just a single dot, they are not that easy to find. That explains why three strangers (one man, two women), with the help of a FLASHLIGHT AND A RULER, were all peering intently at my crotch. It's a good thing my self-esteem is holding up, because it would have been pretty easy to, um, wither under the circumstances.

As they were "investigating", I glanced over to the monitor on the wall. When I looked earlier I had seen rows of meaningless numbers. This time, however, it showed a live feed of what these investigators were investigating. I tell you, if that image had been on the internet, it would have been enough exposure to make Anthony Weiner blush! Even without the internet, my face flushed hot and my feet got cold. I had to remind myself that these were professionals, and that this would be much funnier tomorrow. Maybe the day after.

The treatment team stopped being strangers to me after a while, and we all loosened up. Yesterday a new (female) tech was furrowing her brow and looking for the magic mark. Dan was across the room when he said, “His is really small.” I didn’t hesitate before responding. “You’re talking about my tattoo, right?” He laughed along with me. (To set the record straight, he also said yes.)

The biggest side effect I’ve had to deal with has been minor fatigue, which will continue for a few weeks. No biggie.

However, the plus side IS a biggie! For the first time in months, I can now run around the basketball court and chase my missed three-pointers again! I'm able to stand for more than five minutes without pain! I can go on short walks with Genevieve! I have some freedom back!

If you couldn’t tell by all the exclamation points, that added exercise also is having a great impact on my mood! Nothing like getting the heart pumping to put a smile back on my face! :-) 

I hope each of you, my friends and family, are having as great of a year as I am.

Love,

Dann