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

Setting Phasers on Stun October 19, 2013

Friends and Family,

I told you that things were going to be boring here for a while, but my oncologist had something else in mind. He had hoped that the Tarceva would shrink the cancer that had spread to my bones, but based on pain level there has been no change in the cancer in the bones over the last five months. He recommended radiation treatment in my hips to kill the pain so that I can walk more than 3-4 blocks. After treatment l should also be able to stand for longer periods of time. I can’t wait to get back to running around the gym, chasing countless missed baskets, climbing stairs, and walking without restrictions!

Two weeks of radiation treatment starts next Thursday. Hopefully, the only symptom will be a little fatigue towards the end of the two weeks, although some other minor ones are possible.

While discussing the treatment plan with us, the radiologist showed Genevieve and me the bone scan done in the Spring. Even though we read the written report months ago, the actual images shook us both up. My skeleton looked like it had leopard spots, most heavily in my hips and lower back. Those spots are where the cancer has taken hold in my bones. That was a lot to take in.

It took both of us a few days to shake off those images. I finally got there when I remembered that we were looking at a scan that was five months old. I have been doing just fine during all that time that I didn’t know I wasn’t supposed to be doing this well. Better yet, it doesn’t seem to have gotten any worse.

The radiologist told us that the goal of radiation treatment would be symptom relief. It will kill the cancer, but only in the areas where they target. Since it’s spread throughout my system, radiation can’t get it all. With that in mind, we’re just going to have to stun this cancer enough so that I can go to the gym, stay healthy enough to fight for another day, and keep having fun!

There’s a part of me that is fascinated by the technical side of all of this. I was put on a carbon fiber rolling table that the team slid into a CT machine. The reason for carbon fiber? Radiation beams will come at my hips from 360 degrees. Some of the beams will come from below the table and pass right through the carbon fiber.

After taking new CT images, they put a small tattoo on both of my hips and just below my stomach. The three tattoos will be tracked by laser to use as reference points for where to aim the radiation. I’ve been inked! I’m finally a true Oregonian! Now, when I’m around people talking about their “tats”, I’ll have to restrain myself from saying, “You wanna see mine?”

They also made a plastic mold for my legs, so that every time I come in I will be in exactly the same position. I’m relieved about this part…. I want them to be verrrry careful with their aim down there.

We got a new perspective on the entire situation from the radiologist. She said that I was very fortunate that the cancer in my lower back is on the outside of my vertebra, away from the spinal cord. If it had been the inside, against my spinal cord, I would be dealing with a ton of back pain. I dodged yet another bullet!

At separate times both the radiologist and her resident told us that it was remarkable that I am still alive, seven years after first being diagnosed. Again, this reminds me of how fortunate I am. Where else in the world could I have access to this cutting edge level of care? Without it, I wouldn’t still be here.

I am grateful that insurance has been available to me, and that it will very soon be available to others. Not to get too political here, but I’m very happy that this is now changing on a national level. We all deserve the chance to live, not just the lucky ones who can afford insurance.

Of course, your support and my own attitude have helped a lot!

We have every tool possible available to beat this thing. With all this medical help, and with your support, I plan to stun this cancer into submission until we have a complete cure.

As long as the current path keeps working, I’m patient. I don’t mind waiting. :-)



With love and gratitude,

Dann

A Fantastic Boring Report! October 10, 2013

Friends and Family,

Today we got the results of my latest CT scan, and the news is……. BORING! Nothing has changed! Isn’t that great?

I feel like a sailor who lands at port and can barely walk… because the ground isn’t moving. I have my sea legs, but I don’t have land legs yet! It’s so normal that I’m still trying to adjust.

No growth. No shrinkage. No planned next step. The “wonder drug” shrunk the cancer just enough so I can breathe normally, and is now holding the cancer exactly where it is. We’re not waiting for the next treatment, because we don’t know what it will be.

So what am I supposed to do????

I won’t claim to have the answers, but I will tell you that I have spent a lot of time thinking about the question. When I think about how my time may be limited, these are the things that are important to me:

1. LIVE IN THE PRESENT. I don’t know if I’ll be around for my granddaughter’s next birthday, so I better make the most of this one. I don’t know if I will see my sister again, so I want to enjoy the time I have while she is in town. I don’t even know if I will see the spring, so I better make sure that I have a balance between work and play… and enjoy both now.

2. HAVE AN ATTITUDE OF GRATITUDE. Any situation feels so much better when I can find a reason for gratitude. For example, I still have bone pain, caused by the spread of cancer. That makes it difficult to walk more than three or four blocks. Although that bothers me a lot, it bothers me a whole lot less since I remembered that the first place that lung cancer usually spreads is to the brain. I am extremely grateful that it spread in the other direction. I can live with a little bone pain, but if my brain had been affected I would have lost my tools for coping. This is an enormous gift!

3. RECOGNIZE AND TREASURE THE GIFTS IN YOUR LIFE. I know what a gift Genevieve has been to me. I know what a gift it has been to have each of you as my friends and family. Yes, even cancer has been a gift. It has changed how I think, how I relate to people, and how I understand the world. Except for the near-death part, it has been almost all very positive. My perspective on life, my relationships, and my attitude have all changed for the better because of cancer.

4. STAY CONNECTED. To the people around you, to the things you are doing… if you’re not getting the most out of THIS moment, RIGHT NOW, what are you waiting for? Once this moment is gone, you won’t get it back. Use it or lose it!

5. KEEP PERSPECTIVE. The view is a lot clearer when you can step back and take a look at the big picture. For example, is chemo enjoyable? Absolutely not! BUT… I am still alive seven years after I first had chemo. This is about six and a half years longer than expected, and I’m still going strong. Chemo has given me a lot more time on this planet, so I would gladly start chemo again tomorrow if that’s what it takes.

Of course, this treatment could continue working for many years, or until I die of old age. Or it could keep working long enough for me to start on the next new treatment, and the next. I could live to be 104 years old. Would I feel tricked or cheated because I was living by the things I just told you about? Not a chance! I would feel even more blessed that I was forced to realize that time really is precious, regardless of how much of it we have left.

TAKE THE SHORTCUT! Pretend that you have cancer for a day. See how it brings the important things into focus for you. And if you can find the gifts in your life without needing the chemo, consider yourself extremely blessed.

Love,

Dann

Gratitude and Appreciation August 17, 2013

Friends and Family,

The news on this end continues to be upbeat. My breathing keeps getting easier, and the already-minor side effects from Tarceva are less noticeable every day.

The warm smile on my oncologist’s face this week was the clearest way of telling us the good news. For those of you who weren’t there with Genevieve and me to picture his smile, he said that there is no point in giving me a CT scan before October, because everything is going so well.

One of the life-changing gifts that cancer has given me is a much greater sense of appreciation. I appreciate every sweet breath I take, blue skies, architecture, a friendly dog, chewing gum. It’s a really long list, but especially, I appreciate each of you. I have a very strong feeling of gratitude because you are a part of my life.

Gratitude is another one of the greatest of gifts cancer has given me. I am grateful for every day, because I know every one of them could have been taken away from me, and I don’t know how many more I will get.

AND NOW, I HAVE A FAVOR TO ASK OF YOU. Would you share with me one thing in your life for which you feel grateful? It can be very simple or very profound, a single word or a five page essay. It’s just that I’ve been droning on and on about my health for such a long time, and it would do wonders for my heart to have a conversation that isn’t all about me and my health. I’d love to know what means something to YOU. Even if I know you very well, you may surprise me.

With love and gratitude,

Dann

We're Smiling! July 18, 2013

Friends and Family,

Genevieve and I met with my oncologist today to get the results from my CT scan. We got the best news that we could have hoped for! THE CANCER IS SHRINKING!

Many of the little cancer dots throughout my lungs have disappeared, and the rest are getting smaller. The cancer is also retreating from my bones. My doctor estimates that the cancer has shrunk by roughly THIRTY PERCENT!

After we got the news, Genevieve and I had to stick around for another hour so that I could get a bone-strengthening shot. During that entire hour we couldn’t pull the grins off our faces. My smile muscles are now officially sore! What a great day this turned out to be!

I have never felt more confident coming into one of these appointments than I did today. I have been feeling so much better that the only doubts that I had were of the “It’s almost too good to be true” variety. I’m not breathing hard after simple tasks, my bones don’t hurt, and my energy level is climbing. People around me have noticed the difference too. Genevieve tells me I’m not wheezing in my sleep any more, and out of the blue an acquaintance at the gym told me that I looked like I was doing better. But my friend Ed from work said it best. The other day he said, “I can tell you’re feeling better because you’re giving people pooh-pooh again.” (OK, so he might not have said “pooh-pooh”.)

While we waited for my bone-strengthening shot in the chemo infusion room, the couple sitting next to us showed us a great example of how to get the most out of the life you are given. They were both laughing and almost giddy the entire time we were there. Veronica was bald and hooked up to an IV line. She told her nurse, “I told Larry that it’s been five weeks. It’s been too long. I want to get back to chemo!” I think she had been getting chemo every week or two, before they gave her five weeks off for her body to recuperate. This was her second time having ovarian cancer. She said that this time her tumor had been the size of a cantaloupe. Larry had a bout with colon cancer, and was now doing fine. A couple of years ago he went through chemo, followed by radiation therapy, followed by chemo. Through all of this discussion, the two of them were having such a good time that you would think that they were having a party, rather than having toxic chemo drugs injected into Veronica’s system. Watching them was a great reminder that, even though you may be facing death, you can still focus on the joy of living!

For me, the other takeaway from today is that the combination of everything that we are doing is paying off. This means you, my friends. Your support gives me the added strength to continue to live, long after my expiration date. I feel an enormous sense of gratitude for the inspirational cards from Lynn and Marlene, daily texts from Rebbecca telling me how the “Tarcevian Army” is battling on my behalf, Barb and Pete wearing customized Livestrong-type support bracelets every day, and countless other messages and conversations that tell me that you care. I don’t think I can tell you just how much what you do means to me.

And of course, there is Genevieve. She has taught me that there is nothing more powerful on this earth than the love of another human being. I could fill up a page with JUST THE HIGHLIGHTS of the things that she does to show that she loves me and to help me stay alive.

I won’t deny that I’m doing my part. Attitude, diet, exercise, sleep, and good treatment decisions. These are the things that are within my control. Equally important, I try to let go of everything I can’t control.

The last piece of this success formula is treatment. My oncologist is wonderful, and Tarceva, the new “wonder drug”, is doing the job we hoped it would do. On average Tarceva works for about 8 months, although for some people it has worked for seven years and counting (five years before the drug was even officially approved). My hope has been to live long enough to outrun this cancer, and have new treatments continue to be developed before I need them. So far, it’s working. My oncologist told us today that there is a brand new drug that has been shown to be effective after Tarceva stops working! They are also working on new drugs to overcome cancer’s eventual resistance to Tarceva, so by the time I get to that point (if ever!), another option may be there. Beyond that, he said that there are “softer” forms of chemo available to me that can extend life. All of this gives us more reasons to be hopeful than we have had at any time in the two years since I was first re-diagnosed.

Two months ago it felt like I was sliding faster and faster down a steep hill, heading for a cliff. There was nothing to hang on to that would stop me from going over the edge. Next it felt like I grabbed a tree root just as my feet were dangling over the cliff, and then held my breath while I waited to see if the tree root would support my weight. Now, I have my footing again. Instead of fearing the cliff, I get to look out and admire the view!

How else do I say it? I must be the luckiest guy alive.

With love and gratitude,

Dann

Tarceva, Four Weeks Later June 17, 2013

Friends and Family,

Genevieve and I saw the doctor today, but there are no test results to tell how I’m doing after four weeks on Tarceva. Dr. Lopez-Chavez said that the best indicator of whether it is working is how I am breathing. Genevieve and I both think that I have less shortness of breath, so it looks good for now. Keep thinking prunes! It’s working!

I’ll do a CT scan next month, so we expect to have concrete results to confirm what already feels right in our guts.

Dr. L-C said that the average length of time that this drug is effective is about 8-9 months, although about 20% of the people keep taking it effectively for up to 3-4 years, and a smaller percentage for much longer. Our hope is that all that prune shrinking will reduce the cancer down to NOTHING long before the Tarceva stops working! Dr. L-C thinks this is entirely possible, particularly considering that I have many little spots that are easy for the Tarceva to attack, rather than one big tumor.

So far the side effects of this medication have been entertaining, if nothing else. The rash on my face was thankfully at its worst when I was in Eastern Oregon and away from work for a long weekend. My skin got rough and flaky. My doctor told me to use a sunscreen which, when applied thickly enough to work, left me looking like a ghost. Except that on the rashy areas around my nose the white cream filled in all the rough areas, leaving me looking like Bozo wearing a white clown nose. If only I knew how to make balloon animals, I would have been a big hit with my grandkids at the pool!

It also spread to other less noticeable areas, one of which I’ll tell you about. When it covered my scalp, I was told to apply a skin cream. It made my hair look like I put my finger in an electric socket, so I only apply it at home in the evening. When it started working, my skin started flaking off. The first time I noticed it was right after I brushed my hair. My shirt looked like I had given it a good dusting of talcum powder. I never thought of a leaf blower as a personal grooming accessory until now.

Since I don’t have a cordless leaf blower to take with me out of the house, I had to come up with a Plan B. When I take off my coat, I shake it like a matador. And if you look very hard, you may discover a little bull.

The rash has spread to a few other areas as well, but the only funny part about that is attempting to be nonchalant while applying cream to all these places in the locker room. Nobody has said anything yet, but there seem to be a lot of empty lockers around me lately.

On to the really important stuff. You have my heartfelt and eternal gratitude for all of your support, which has come in so many ways. It says so much about your character that so many of you have become closer to me as I have gone through this. The easier, less painful way would be to avoid being around someone who has what is usually a terminal illness. I admire each of you for this, and only hope that I would do the same if I was in your shoes. I have regained enough perspective to find my sense of humor again, but there are times when it is still pretty scary. You make that so much easier by being there. Better yet, your being there for me makes being alive a joy every day.

Enjoy the weather. It's another beautiful day. No matter where you are.

Love,

Dann


Wild Ride June 4, 2013

Friends and Family,

Have you seen my brain? I think my emotions kicked it to the curb somewhere along the way.

In the past 12 days, since I started Tarceva, I have taken scraplets of information and tried to use them to project how long I'm going to live. It has done me as much good as asking a fortune teller at a carnival.

Within days of starting the Tarceva the pain in my hip got much worse. Taking an ice cube's worth of information, I was sure that there was an iceberg's worth of worsening cancer under the surface. I started daydreaming about needing a hospital bed in our living room, since at this rate I would be unable to climb the stairs pretty soon.

To compound the situation, I started getting a skin rash and ulcers in my throat. Those are common side effects, but I started worrying that they would get so out of control that I would have to discontinue Tarceva. Also, if those symptoms got bad, maybe Tarceva was attacking some other internal organ, which it can do. (Never mind that it's rare.) It was one more reason why Tarceva might be taken away from me, leaving me defenseless.

My body was telling me I'm getting worse, and my brain wasn't doing a very good job of convincing me look for the positives.

I tried emailing my doctor several times, but different nurses kept answering the individual questions. I finally emailed him and said, "I need to talk to you." He called me, on a Saturday evening, from a conference in Chicago, within an hour. That, my friends, is much more dedication than I have any right to expect. I appreciate Dr. Lopez-Chavez very much, and this is just one of the reasons.

That's when things started to turn around. Dr. Lopez-Chavez said that there was no chance that the cancer could grow quickly enough to make the pain escalate that quickly. He suggested I stop doing exercise that involves my legs, since that was the only likely cause. He also told me that the side effects are a good indication that the Tarceva is working! I got a clear feeling that he truly expects the Tarceva to shrink the cancer completely, and that he’s not just trying to encourage me.

Genevieve had been telling me that for the past few nights in bed I no longer sounded like a freight train breathing in her ear. (Funny how I had discounted the sudden improvement in breathing, but not the sudden worsening of hip pain!) I asked my doctor about this: It couldn't possibly be the Tarceva working this quickly, could it? He said YES, it absolutely could be!

Since then I've been testing my breathing, and I may be imagining it, but I think it feels less constricted. I really, really want to believe.

Also, Genevieve and I thought back over the previous week. We had been hiking, walking all around Bend and Eagle Crest, played with the grandkids in the pool for hours... The increased hip pain made sense. Once I backed off, the pain subsided.

Now I have two ice cubes' worth of information, and I have decided that there is an iceberg's worth of GOOD NEWS beneath the surface! We'll know for sure in another 7 weeks, when I do my next CT scan. Meanwhile I'll try not to get too carried away, but I admit that it will be hard to stop myself from trying to read the tea leaves.

In the last email I told you that the Tarceva may cause a pimply rash, but I was OK with it as long as I didn't get the teen mood swings. HA! I've had a lot more mood swings than pimples! I guess I can deal with that as well. However, things will go much better if I go back to my mantra: Live in the NOW. Things are pretty great in the present!

I guess I'm OK with the mood swings too. However, I may need a favor from you. If you see my brain somewhere along the way, please let me know. I may not notice that it's missing for a while.

Love,

Dann

Viva Tarceva! May 22, 2013

Friends and Family,

First, I want to tell you what a gift this week has been. Thank you to everyone who reached out to me in so many ways. Your show of love is the most healing thing that could have ever happened during what was otherwise a very tough week. So many of you sent encouraging emails and called me. At work they had an Aloha Spirit da
y, so most people wore Hawaiian shirts to show their love and support for me. Thank you to Kristina and Cindy for the idea, and Kristina for the amazing graphic work! I’ve attached it so you can all see what a gift this has been. Barb brought over some of her incredible soup to nurture the soul, and it works! Rebbecca has been texting me her visualizations of beating the cancer every day, and Marje and Dick are planting a row in their garden with my name on it. Growth! How wonderful! Genevieve bought a purple “energy plate” to “charge” the Tarceva to do its job more effectively. (She made me put this in here.) So many other people have sent messages, prayers and positive energy. I am blessed to have the best kind of people around me that anyone could hope for when going through something this challenging. Or any other time, for that matter.

We got the results of my bone scan back a couple of days ago. It confirmed that the cancer has spread to a few places in my spine, my hips and one rib. But cancer schmancer! It’s time to take the cure.

I have been thinking a lot about what would have come next if I didn’t have Tarceva as an option. It makes me feel extremely fortunate to have this treatment available. Tarceva wasn’t even an FDA approved drug until just after I first saw my oncologist (almost two years ago). Now I have the option of taking the most successful lung cancer drug in the entire history of the world. Not only that, but I’m also one of the lucky few to live in a country where I have access to this drug and have health insurance.

The good fortune doesn’t stop there. Everything had to line up just right for me to get this chance. When my cancer was first diagnosed, it was tested for EGFR, which is the only genetic mutation that Tarceva treats. The results came back negative. I didn’t qualify for Tarceva. However, since I moved my treatment to OHSU and agreed to be part of a research study, my cancer was re-tested using the same lab as the other research subjects. It is only because it was re-tested that the cancer was found to have EGFR. There was an error in the earlier testing that would have never been found if I had not switched clinics. I would never have had the chance to start Tarceva. Only one out of eight people have this mutation in their cancer, so I’m coming out ahead against long odds.

Add it all up, and the odds against getting this far are extraordinary. What a gift!

Given how quickly the cancer is now spreading, I’m at a true crossroads now. If the Tarceva doesn’t work, my health could get worse quickly. If it does work, it could either stop the cancer from growing, or shrink it down to nothing. I could become cancer free for years, or even for life. As long as the side effects stay manageable, I will get a CT scan in two months and we’ll see what kind of success we’re having. Think dried prunes! (But not too many – diarrhea is another likely side effect.)

It has taken 10 days to get to this point because I’ve had to deal with one insurance company and three pharmacies (don’t ask), but Thursday morning I will finally be starting Tarceva. All I have to do is take a pill once a day, and the side effects are usually minimal compared to chemo. The most likely side effect others will notice is if I get a rash on my face that looks like mild to severe acne. Too bad the raging hormones don’t come along with it! I can deal with the acne again, as long as I don’t have to deal with being an insecure teenager all over again. Once was plenty!

This is it! Think dried prunes!

Love,

Dann

The Next Step May 13, 2013

Friends and Family,

Today we met with the oncologist and got the results of my latest CT scan. The cancer has grown, which wasn’t a surprise since I noticed a little more difficulty breathing. The unexpected part is that it looks on the CT scan like it has spread to my pelvic bone. I’ve had some soreness in my hip for the past couple of months, which has led to a limp, but until today I thought I might have pulled a muscle or strained a tendon in yoga. I thought that the limping caused my lower back pain, but Dr. Lopez-Chavez thinks that the back pain is also caused by cancer in the bone. I’m going to have a bone scan this Thursday to get better information. We should have the results by early next week.

Either way, what this means is that it’s time to start the next phase of treatment. But before I go into that, I have to tell you how GREAT this run has been! I have been off all treatment for the last 11 months. Whoever heard of a cancer that just sits there and doesn’t grow? The more time that has passed, the more grateful and excited I have been about how well things have been going. Every day where I haven’t had to start treatment meant that I won again. I won the grand prize of another day on this planet 335 days in a row!

As if that wasn’t enough, there’s a huge bonus. Treatment is evolving so fast that stalling off the cancer for 11 months has given me a better chance of outrunning this cancer altogether. THAT has been the big picture in my mind. The longer I stay alive, the better the chances are that more treatment options will come along that will delay the cancer, or defeat it altogether.

One of the greatest gifts that cancer has given me is to teach me about gratitude. These past few months have been some of the best days of my life. Part of this is because I am grateful for every day, and part of it is because of one of cancer’s other great gifts: Teaching me to live in the present. I have spent very little time thinking about the next CT scan, and a lot of time thinking about how beautiful life is. It is amazing how wonderful life can be when you only worry about today.

To show you how well this works, I’ll tell you what it has been like for me. Last month Genevieve and I had the most perfect trip to Hawaii imaginable. We didn’t put on our shoes the entire trip, at least until we were leaving for the airport. We swam, body surfed, and took long sunrise walks on the beach. We swam in the ocean during a rainstorm, and the raindrop splashes looked like thousands of popcorn kernels bursting out of the water. We sipped glasses of wine at sunset on the six-foot bluff in front of the beach, and watched the sea turtles lazily pop their heads up every now and then. Back in Oregon, we’ve had the most beautiful, sunny, warm spring that I’ve seen in my lifetime. Every single day has been exhilarating. We capped off the entire spring of beauty by seeing the Dalai Lama on Saturday. He talked about how having compassion for others is even more important than religious beliefs, which is both refreshing and remarkable, particularly when coming from one of the greatest spiritual leaders of our lifetime.

On to treatment. Once this prescription clears the insurance barrier (within a few days), I’ll be starting Tarceva. This is the targeted genetic treatment that was touted as the next Wonder Drug when it came out nearly two years ago, just when I was diagnosed. I am one of the very, very lucky 12% of people with lung cancer that have the right genetic mutation for this treatment to work. If it works, it will either stop the cancer from growing, or shrink it. It may even shrink it completely, even in the bones. The chances are better for me than for most people that it can shrink the cancer completely because the tumors are so small that it’s easier for the Tarceva to attack them from all sides.

The biggest question mark is how well Tarceva works when you have TWO genetic mutations, which my cancer has. There is no research on this one. Yet. I am part of the research. I aim to put the outcome in the “plus” column, but at this point we have no idea how the second mutation will impact treatment.

The cancer grows by taking the blood from surrounding tissues. There are thousands of these little suckers. The Tarceva works by choking off the blood supply to the tumors, and by preventing the cancer from creating new veins in order to add new blood supplies. I like to visualize the tumors as if cutting off the blood supply turns them into dried prunes.

Here is where I’m hoping you will come in. I could really use your help, now more than ever, with any of the following: Send your positive thoughts and prayers. Think dried prunes. Ask for help from Jesus, Krishna, Allah, the aliens, or the Cookie Monster. Send positive energy. Send a candy gram, or send an email.

In other words, in any way you want to do it, in any form you can, send love. It’s the only thing I know that works no matter what you believe in.

Thank you so much for your love and support. In my heart I truly believe that your love is what is keeping me alive.

Love,

Dann

Flight Club and More February 25, 2013

Friends and Family,

A couple of years ago my office moved from the first floor to the sixth floor. Duncan, one of the guys in the office, decided that this was an excellent opportunity to get a group of people to exercise. He started the “Flight Club”.

It was a pretty clever idea. He set up an Excel spreadsheet with everyone’s name along the top line, and listed every day of the year along the side. Each day, you count how many stairs you climb and plug the number into the spreadsheet. It automatically calculates how many total steps you have climbed since Flight Club began. He had it set up so that it would also calculate how many times each person climbed the equivalent of the Empire State Building, for a little extra inspiration. To make it easier to count, he had a cheat sheet that told you how many steps you climbed, depending on which flight of stairs you started on. That’s where the “flight” part comes in.

Today I celebrated a milestone. Since I began the Flight Club just under two years ago, I have climbed 100,000 steps. That’s more than 53 times up the Empire State Building. I tell you this not to brag, although I’m quite proud of this. I’m telling you this in the hope that it will offer motivation.

Those stairs have helped me through the nausea, the low energy, and the low mood points that came with chemo. The catch is this: If I hadn’t started five months before I was diagnosed with cancer, I never would have started. It’s just too overwhelming dealing with a new diagnosis and feeling sick to say, “I think I’ll start an exercise program now.” It doesn’t matter how good it is for you.

The same thing applies to the gym. I started working out regularly 11 years ago, which made it much easier to keep going when I needed chemo and surgery the first time, almost seven years ago. Since the exercise program was still in place, it worked the same way when I needed chemo and surgery this time around. In fact, both times before the surgeries I stepped up my exercise, telling myself that I was in training for surgery. This probably helped my recovery, but even more than that, it helped me to feel that I had control over at least one thing that would contribute to my health. The mental part was probably the biggest piece of it. And again, the takeaway is that this is another activity I wouldn’t have started if I had waited until after I was diagnosed.

Duncan, who started the Flight Club, left the company awhile back. Until then he was a daily stair climber. He is also an avid runner. And one more thing: He had cancer many years ago. I don’t think it’s a coincidence that someone who has learned how precious life is, would do everything he can to make the most of it.

There is only one other person in the office that has continued Flight Club with me since Duncan left. That’s my buddy John. He recently had a heart attack. That doesn’t sound like a glowing recommendation for the stairs, but it will when you hear the rest of the story. His doctor told him that other than having a faulty heart valve, his heart was in great shape. The valve how now been repaired, and he’s back on the stairs again. He barely “skipped a beat.” The day he got back to work he looked just as good as he did the day before the heart attack. What kind of shape would he be in if he hadn’t been exercising?

This brings me to my point. You may be the picture of health right now. More likely, you’re thinking, “I’m not in as good of shape as I used to be, but I’m still doing pretty well.” Further down the road, and in this case the hall, there’s Terry, who works in another office. Recently he told me, “I’m in pretty good shape. Round is a shape, isn’t it?”

Regardless of what shape you’re in, at some point something will change. If you’re already doing some exercise, you will have a much easier time coping with whatever comes your way. Better yet, you will improve your chances of preventing problems. Cancer, diabetes, the heartbreak of psoriasis. You name it.

Find something that works for you. Do it while you’re healthy.

To paraphrase an old Chinese proverb, a journey of 100,000 steps begins with a single flight.

Love,

Dann


A Little Growth February 12, 2013

Friends and Family,

Yesterday I got the results from my latest CT scan. This time I was feeling so good that I even had the fantasy that the cancer might have shrunk. But once again, the news was the opposite of what I was expecting. This time there was some growth in the cancer.

My oncologist showed me a side-by-side comparison of Friday’s scan with my scan from 6 months ago. I could see growth in some of the cancer nodules, and there were new ones that weren’t there six months ago. For background, this isn’t the typical cancer pattern, where there is one big tumor. Instead, the CT scan looks more like what you would see if you were looking up at the stars on a clear night. The cancer specs look countless and distant. Distant is where I’d like them to stay, but on the most recent scan they look closer than they used to.

Actually seeing the growth of the cancer made it real again. I can’t pretend that there’s nothing wrong with my lungs. But I was doing a pretty good job of it for a while.

Time for a reality check. I should have had to start treatment six months ago, but the cancer is growing much slower than expected. I am way, way ahead. I haven’t felt this good since before I was diagnosed, which was 18 months ago. I’m feeling great! My year-long Avastin headache is gone and I’m off pain meds, which has to be a big part of it. I’ve also increased my cardio workouts, so I don’t feel so winded after exercise.

Once I took a step back and reminded myself of how much better off I am than was expected at this stage, I started feeling much better again. The cancer has grown so little that I don’t need to start treatment again yet! How many people with Stage IV lung cancer are still alive 18 months after diagnosis, let alone feeling great? This is a fresh reminder to treasure every day. I don’t know how many I’ll have.

A friend of mine told me about a group of retired nurses who had worked with terminal cancer patients. Every one of them said that if they had the choice of how they died, they hoped that it would be from cancer. Their reasoning was that it would give them time to decide what was important in life, and time to say what they needed to say to the people that are important in their lives. Despite the negatives of cancer, I completely understand what they are saying. In some ways it’s a real blessing. Another time I’ll tell you about what I see as some of the other blessings of cancer. But do you need to wait for cancer to set your priorities? Can you treat yourself as important enough to do this if you aren’t facing death? It takes a lot of commitment if you aren’t facing a deadline.

One more short story. A few months ago Genevieve called me on the way home from work. There was a lottery drawing that night for a half a billion dollars. She asked me to stop by the grocery store and buy a ticket, which meant standing in line for about an hour after a long day at work. A big smile came across my face. I started thinking, “Why do I need to buy a lottery ticket? I’m deeply in love, I’m still alive, and I’m feeling good. What more could I ask for? I’ve already won the lottery.”

So here is what I said to my sweetheart:

“How many tickets would you like?”

The things we do for love.

I hope you win the” lottery”, and decide who and what are important to you. While you still have the time.

Love,

Dann

Portless in Portland - December 4, 2012

Friends and Family,

Today we took another positive step. My oncologist had suggested last month that it was time to have my chemo port removed. The message was clear: He was telling us that another round of chemo isn't anywhere on the horizon. We pressed him. He said that there are other options, including the Tarceva, that put chemo off in the distance, if it is ever needed at all. It was a great message of hope.

This morning I had the port removed in a minor day surgery procedure. It was so routine that it felt like bringing my car in for a lube job. The nurses told me that they do a lot of port removals, which is heartening to think about. They referred to it as a “graduation.” It felt a lot like that. I am very happy to say that chemo is now in the rear view mirror.

After the procedure Genevieve and I stopped in the cafe in the clinic’s lobby to have a cup of coffee. As I was paying the cashier, it hit me what a life-changing event had just occurred. I was thankful that the cashier was too distracted to notice that I had started sobbing. As we sat down, I couldn’t stop. Finally Genevieve distracted me, and I was able to regain some composure. Then SHE started sobbing, which almost got me started again. It was an emotional, sweet moment to share.

And now completely shifting gears, I have another story that shows how my own hope has grown. It starts with new underwear.

Genevieve and I made a trip to Eastern Oregon over the Labor Day weekend, and somehow I "forgot" to bring my essentials. I had been thinking that I needed new underwear, but I kept putting it off. To put it bluntly, I didn't know if I was going to be around long enough for it to make any difference, not to mention that nobody else was going to notice.

This was right when we hit the one year mark with no growth in the cancer. So how better to celebrate? We went into Ross and I found every pair of underwear that were my size and in a style that, if I wore them in the men's locker room, wouldn't either get me unsolicited date offers, or have the guys thinking I had joined a conservative religious sect. Using this strict criteria, I was able to find just the number I needed, including one package where someone had inexplicably removed one pair.

I took these to the checkout line. When the cashier offered me a 15% discount on that package, I pointed out that one-third of the contents were missing. Math not being her strong suit, she stared back at me blankly. I suggested that there should be a better price adjustment. She held the underwear up over her head and yelled across the checkout line next to us (all women), the 30 foot wide entry, and the next checkout line (also all women) to her supervisor (yes, a woman). While a loud conversation ensued, to the interest of the two dozen women between Here and There, I was thinking to myself, "I better stick around a REALLY long time to make it worth going through this."

The following week we got more good news with the latest CT scan results. Encouraged by this, and not even consciously, I went out and bought a couple of new pairs of jeans. Next, I replaced all my socks. This mounting optimism reached a peak last week when Genevieve and I bought a big new flat screen TV. Now, I'm even more and more hopeful that I'll be around long enough to get a lot of use out of all of these new purchases.

Here's hoping that there's new underwear in your future too.

Love,

Dann

Message Received - November 17, 2012

Friends and Family,

I had CT and MRI scans last Friday, checking for cancer growth in my lungs and to see if it is spreading to other parts of my body or brain. I had a pretty good idea what to expect when we met with the oncologist this week to get the results, based on increased problems with coughing and even just breathing. In my mind, the best case scenario here is that the cancer has grown a little, and it’s time to start Tarceva. I was gearing up to accept this, but otherwise trying not to give it a lot of attention. However, what we heard from my doctor stunned me.

The cancer is not growing.

Since you’ve read my emails, you know I rarely run out of words. But this time I was speechless. I was almost certain that I had already used up more unbelievably good fortune than anyone could possibly hope for at this stage.

Eventually, I was able to get out a question. “I don’t get it. The survival time after diagnosis of Stage IV cancer is usually 6-8 months. It’s now been 15 months since I was diagnosed. I haven’t even had any treatment for five months, and the cancer is still not growing. Is this unusual?

Dr. Lopez-Chavez agreed. Then he paused, looked like he just realized something and surprised himself, and said, “It’s VERY unusual.” He has no explanation.

I have my own idea, and you keep hearing it from me. Your love and support are working!!!!!!!!!!! Combine that with attitude, determination, and healthy choices like exercise, and we’re beating this thing one day at a time. I’m grateful for your emails, your comments, and your other acts of kindness every day, though sometimes I feel a little too awkward and shy to say so directly. Let me say it again: Thank you, from the depths of my soul. I appreciate every word, every gesture.

The only explanation for the cough and breathing difficulties we can find is that I have the remnants of a cold that has been going on for almost eight weeks. I can’t fight off a cold to save my life, but we’ve stopped cancer in its tracks. Go figure.

The headaches have decreased. I no longer take enough pain killers to tranquilize a horse. At best, I could make a small pony groggy with what I’m taking now. But headaches – shmeadaches! I’m having less pain and there’s no growth in the cancer. Who wouldn’t take that in a heartbeat???

If you’ve never had an MRI, you’re missing a one-of-a-kind experience. The machine is so loud that they give you earplugs. Even with earplugs, it’s pretty loud. They packed my head in a helmet-like brace, and stuffed foam padding between my head and the brace to keep me from moving even slightly. The tests take about a half-hour, but if you cough, scratch (everything itches when you know you can’t scratch!), swallow, or think too hard in the wrong direction, they have to repeat one of the five or six minute tests.

I was moping for about a day before the test, thinking it would just confirm that the cancer was growing in my lungs, and hoping it wouldn’t show that cancer had spread to my brain. Then the loud machine started up. It made a lot of different noises. One of the first noises sounded like a nasally, mechanical “NOWNOWNOWNOWNOW”. Still moping, it hit me. “Maybe I should try living in the now.” I laughed at this message pounding in my ears, which was pretty hard to do while not moving.

So I get another giant reminder not to worry about things that haven’t happened yet. Stay in the NOW, and let everything sort itself out. Message received, loud and clear. Even through earplugs.

Wishing you a Happy Thanksgiving. It’s my favorite day of the year. There’s so much to be grateful for.

Love,

Dann

CT's, MRI's, and Red Corvettes - October 16, 2012

Family and Friends,

I am thrilled to say that there is nothing exciting to tell you. I've had follow-up lab work a couple of times since my last email, and my kidneys are returning to normal. Best of all, I've had no symptoms that the cancer is growing. Next month I'll have a CT and MRI, so we'll know exactly where we are then. I feel fortunate beyond words that I continue to have no growth in the cancer, and without treatment.

Let me put it this way. It's like finding milk in your fridge that is three weeks past the expiration date, and it hasn't soured yet. Only better.

There are many, many reasons why this is happening. You know who you are. I owe you my eternal gratitude.

That's it for the news. Read on if you want to hear a story that's more connected than you might first think.


When I was in eighth grade, I got the biggest thrill of my young life. It started in the place where I never expected dreams to happen: School.

I can’t remember the reason why my teacher asked me to leave the school and go with her, or even where we went. It might have had something to do with working on the school newspaper, since we were still back in the days when “cut and paste” involved scissors and rubber glue.

For whatever the reason this was happening, I left the building with her (awkward!) and went out to the parking lot. And that’s when I saw it: My teacher’s new, bright red Corvette. Even as we were walking toward it, I was sure she was going to walk right past it and use her key to unlock some puny teachermobile. When we stopped at the Vette, I was living a dream. Of course, I tried my best to act like I was getting on a school bus. I had an image to protect, regardless of extreme circumstances.

For me there were only two really, really exciting things in life at the age of 14: Cars and girls. I was getting one of them. This was even better than being with Farah Fawcett or Cheryl Tiegs, probably because this was the half of my dreams that I knew what to do with.

I was impressed by the bucket seats. They were nothing like the bench seats in my parent’s car. I was surprised when I climbed in and was so close to the ground. It felt like I was in a space capsule. This was real! I was riding in a FREAKING RED CORVETTE!!!!!!!!.

She turned the key. The engine responded with a deep rumbling VRMMMMM. It sent the feeling of power running through my chest, as if it was me that was starting up. As we backed out of the parking space I looked around, desperately hoping that some of my friends would see me. I wanted them to ask me about it later and beg me for details. No luck, but no problem. I was still living the dream.

As we drove, I didn’t know what to say. Luckily, she had the obvious small-talk topic at her disposal to cut the awkwardness. She talked about the car.

I can’t remember most of what she said, but one part has stayed with me for over forty years. She told me that with a Corvette, every now and then you had to take it out on the freeway, get up some speed, and blow the junk out the carburetors. That sounded exactly like what a person driving one of the hottest cars in the entire world would need to know. I had been given some new car expertise that I could show off to my buddies.

I have never owned a hot car in my life. In fact, I’ve never ridden in another car as hot as that red Corvette. But even without a hot car, that sage advice turned out to be far more useful than I ever imagined.

I think about this advice twice a day, every time I climb the seven flights of stairs up to my office. I go as fast as I can, and pretty quickly I’m breathing hard. By the time I reach the top I’m breathing really, really hard. Each time, it’s because I have a goal in mind.

I have to blow the junk out of my carburetors.

Here's hoping that all your dreams come true.

Love,

Dann

Flying Without a Net - August 12, 2012

Friends and Family,

It has been eight weeks since my last treatment with Avastin. I had a CT scan and lab work last week, followed by an appointment with my oncologist on Thursday to go over the results. Since my kidneys are taking too long to recover, it looks like there will be no more treatment with Avastin. Genevieve and I have been anxious to find out whether the cancer would start taking off, since it has now been two months since my last treatment.

We got some really great news. The cancer has grown, but so little that my oncologist considers it insignificant. Unless new symptoms come up, he doesn't even want me to have another CT scan for three months. He will want me to have a brain MRI at that time, since I still have killer headaches that require enough pain killers to tranquilize a horse every day. The severity, consistency and duration are a bit unusual, but since they haven't changed for six or seven months he's not particularly alarmed. Of course, I've done my own research on this. One person blogged that it took six months after treatment ended for her Avastin headaches to go away, so I'll just stay patient and grateful that this is the biggest of my concerns at this time.

This is the best of all worlds: No treatment, and no cancer growth. Based on everything I have read, this lack of growth is pretty extraordinary, now that there is nothing (at least no medical treatment!) stopping the cancer from growing.

My heartfelt thanks goes out to all of you for your positive thoughts, prayers, and all of the other support you have given me. Without all of you, and particularly Genevieve, there is no doubt in my mind that I would be on a very different path right now.

Today we're going to watch the closing ceremony for the Olympics. It has inspired me to start training for Rio de Janeiro in 2016. I already have LONG JUMP experience, after leaping to conclusions when I suddenly started having problems with my breathing a couple of months ago. This has also given me great experience at DIVING into the unknown, MENTAL GYMNASTICS, and WRESTLING with my emotions.

Watch out, Michael Phelps. I feel a new record coming on.

Love,

Dann