A Little Disaster Can be a Good Thing

Friends and Family,

I spent last Friday to Sunday at the LUNGevity (lung cancer) HOPE Summit. I bet you weren’t expecting to see “Hope” and “lung cancer” in the same sentence, but there you go. That’s why we needed a summit, and it hit the spot.

I got fired up hearing about new research and treatments that are changing so rapidly that even oncologists are having a hard time keeping up. It gave me hope to meet 150 survivors, most of whom are Stage IV (spread beyond the lungs). It inspired me to find out how many of my peers are going on TV, writing articles, and organizing walks.

But that’s not my story. I thought it would be more fun to tell you about our little disaster. In a conference organized down to the minute, a tad bit of chaos erupted.

A local restaurant agreed to host us for a dinner away from our hotel. We loaded into five limo buses, with me on lucky #5.

Did I say local restaurant? The ride was so long that the natives started getting a little restless. Questions about where we were going and what state we were in popped up. Eventually, our bus pulled off the freeway. Moving slowly through an intersection, the bus weaved back and forth indecisively between lanes. The driver turned, stopped in the middle of the intersection, BACKED UP, and got back on the freeway in the other direction.

About that time, somebody spotted the driver Googling the restaurant address.

That did it. The backseat drivers couldn’t hold back any longer. At first it was one or two. But the more indecisive the driver got, the more people joined in. Soon, there were seven drivers, all telling the driver behind the wheel where to go. I get the parallels here: “Take charge of the bus before it gets out of control” looks an awful lot like, “Take control of your own treatment.”

The driver acted like he didn’t hear them.

It gets better. Bus alarms started going off, and the bus started sputtering. Fortunately, those noises were drowned out by the backseat drivers.

The front seat driver got more indecisive, weaving between lanes, taking no head of several people commanding him to pull over. A woman in a convertible passed us, first using her turn signals, and then using a hand signal not found in the Driver’s Ed book.

Katie, who has organized just about everything at LUNGevity since it has been around, got resourceful. She called the bus company, who called the driver. Problem solved? Surely you know where this is going. The driver wouldn’t answer his phone.

You would think this would be the time things would get more tense, wouldn’t you? HA! You don’t know my peeps! This isn’t even a PIMPLE on a problem. Cancer this big, bus problem this big.  Ya gotta love the perspective. This is when the laughter started!

There was, however, one person who began having panic attack symptoms. She was flooded with offers to help. “I’ve got anti-anxiety medication of you need it.” “Would an antacid help?” “I’ve got just about any kind of narcotic that you might need. Name it.” As the panic symptoms start to fade, we decide that we had an entire pharmacy available on this bus, which makes us laugh even more. This isn’t a disaster, it’s an adventure! 

Sputtering up a hill at half speed, the bus finally pulled off at an exit. The driver called his bus company and started talking in Spanish to his boss. This is great! Six backseat drivers, and the driver doesn’t understand any of them!

The more ridiculous it gets, the more laughter erupts. People start taking pictures. “Make a scared face.” “Eeeeeeeeee!”  

Making the most of the situation, a lot of us get off the bus and admire the Camp Marcy (wherever that is) scenery. Someone suggests “I survived the bus” tee shirts, which evolves into “I survived lung cancer the bus.” At this point people are taking pictures of other people taking pictures, because everybody wants to remember this.

Then Katie, our fearless leader, breaks out the big guns. She turns it into a promo video clip: “What takes my breath away? A BUS THAT RUNS OUT OF GASSSSSS!”  Don’t let lung cancer take your breath away!”

Finally, the bus company shows up… in cars. They offer to take some people in the cars while we wait for the next bus. We’re all hungry, and maybe a wee bit thirsty, but nobody wants to go. Through this “tragedy,” new bonds have been formed. This busload of strangers has become a tight group that didn’t want to be broken up.

Finally, a few reluctantly get into the cars, just as the next bus arrives. We all arrive substantially later than planned. The owners of The Old Angler’s Inn, who have graciously hosted this event, extend their hospitality even more by keeping their doors open until we have all been well fed and plied with alcohol.

So this is what I love about this group. Every person was focused on what they could get out of the moment, not on what went wrong. A potentially ruined evening turns into one of the highlights of the weekend. Warm friendships are forged over events that would sour the entire weekend for people who aren’t blessed with the gift of perspective.

I recently saw someone’s blog post that said, “If cancer is a gift, can I return it?” Sure I’d like to return my gift, now that I’ve had it for a while. But this little disaster, and these great people, reminded me what a gift it has been.

Here’s to the gifts in your life, whatever they may be.

Love,

Dann

Love and Trash

Friends and Family,

Things are pretty spectacular right now, and only partly because of trash.

I know that isn't what you would expect me to say when I'm telling you about a trip to Hawaii. You might be expecting me to tell you about the sunny, breezy, tropical weather, or the warm water that has been perfect for body surfing and boogie boarding. Maybe you're thinking I'll tell you more about the five mile sunrise walks on the beach with Genevieve, where we have the beach almost to ourselves.

You would be right to guess all of those things. But the trip gets much better.

The stars aligned so that my son Mike and his wife Victoria were able to join us. Since Mike hasn't lived with us since he was a troubled teen, and since he hasn't even lived in the same state as we have for the second half of his life, this time has been special.

It's pretty obvious from this picture where Mike gets his muscular build.

It's pretty obvious from this picture where Mike gets his muscular build.

We've had a chance to hear about Mike's and Victoria's accomplishments and challenges as missionaries for the past four years in the Philippines. Making a dad even more proud, it would be hard not to see the love in his relationships with his wife, Victoria, with his children (unfortunately not with us), and with everyone around him. It's been a special time, a chance to reconnect. This time of love and sharing has been a father's dream.

This time with Mike and Victoria has been the richest part of our trip, but it isn't the only thing we did that left us feeling full of love. We also picked up trash.

Even with their "aloha spirit" ("love"), the Hawaiian people are still learning how to treasure their environment. We've been collecting trash on our morning walks for years, hoping that when the beaches look beautiful, everyone will want to keep it that way. It's our gift of aloha.

This is where the healing comes in. Love heals. It heals our cells, and I believe this includes cancer. It heals our soul. It holds true whether it's the love of family, the love of everyone, or the love of the world. Even if we're collecting trash, it feels good to leave the world a better place than we found it. It's all love.

So what gives you the aloha spirit? I can't wait to hear your ideas. You know why? Because your sharing will be healing for you, and for me, and for everyone else who reads this. Please share your stories or thoughts about healing love, whether it is two words or two pages.

Aloha,

Dann

Things are going to H@%%

Friends and Family,

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,

Dann

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

Lovely Blog Award Nomination - February 9, 2015

Friends and Family,

You may have noticed that this is Award Season. The Emmy, The People's Choice, the  Grammy, the Lovely... What? You haven't heard of the One Lovely Blog award?  Fortunately, you didn't miss my acceptance speech. I'll start now... What? it's time for commercial break? I was just getting started!

At first I wondered what the award was about. It's not restricted to cancer blogs, so any blog is eligible. It simply means that you have been nominated by another "winner" that appreciates your blog and wants others to see it as well. To accept the award, you need to take the four steps below:

  1. Thank the person who nominated you for the award.A big thank you goes out to Craig Blower https://craigblower.wordpress.com/, who nominated me.
  2.    Add the One Lovely Blog logo to your post.
  3.    Share 7 facts/or things about yourself.
  4.   Nominate 15 bloggers you admire and inform nominees by commenting on their blog.

It was the last item that makes the award special to me. It takes a lot of time and scouring the internet to find good blogs, so to offer you 15 good options is the benefit to you. The research involved is why it has taken me since October to respond to the nomination. I was going to procrastinate even longer, but I didn't get around to it.

After all, I still have a day job, and writing has been taking up a fair amount of my free time. So gradually over the past four months I have done my homework in order to do this award justice.

I digress. Like a good student, I will do my homework in the order assigned. Here is the Lovely Blog Logo:

Isn't it lovely? I do appreciate that it's all about heart, which to me what it's all about.

Next, here are seven facts/things about me that you probably don't know:

  1. Many of you have encouraged me to write a book. It may not have seemed like it, but I really was listening. I did it! The working title for my book is "Beating Cancer With Heart and Attitude."©  The book is about what has kept me alive for nearly nine years, about how I have grown with a big nudge from cancer, and all the love you have shown. The content is 99% new. If any of you have suggestions or connections to get it published, I would love to hear from you.
  2. I have three brothers and a sister. All five of us knocked out one, two, or three of our front teeth in childhood, although my youngest brother Mike barely gave it a token effort. He merely chipped a tooth. I knocked out my front two at the age of six when I was shoveling snow, pushing the shovel in front of me until the shovel stopped -- and I didn't. I had silver teeth until I was 12 or 13. 
  3. I lived in Australia (Sydney) for three years, back in the early 1980's. I love how Australians make a point of expressing differences with friends, believing that you aren't much of a friend if you can't be yourself. They even turned teasing each other about differences into a sport. They call it "stirring." If you hate Obama, for example, they will sing his praises and wait for you to go off. Very entertaining.
  4. I have webbed toes. Not all of them -- just the second and third toes on both feet. My ring and middle finger on my left hand were also webbed at birth. My parents had them separated at the age of five, because they thought other kids would make fun of me. I was in the hospital for a week to cut a little skin between my fingers... Medical care has changed a bit since then. 
  5. My personal speed record for getting fired is three hours. It was a temporary job in a brewery in Sydney. I was fired before even taking advantage of the "beer breaks." True story: Free beer at both breaks and lunch. I was fired for pushing around a cart full of fluorescent light bulbs because I had the wrong union card. I would have just stopped, but my egregious action set off a turf war with the electrician's union guys.
  6. I have had about twenty-one different paid jobs. Yes, I know how flaky that sounds. Here they are:
    1. Paperboy
    2. Doberman show dog trainer
    3. Pooper scooper at a dog kennel
    4. Dishwasher
    5. Busboy
    6. Waiter
    7. Cook
    8. Cashier
    9. Bartender
    10. Probation officer
    11. Halfway house counselor  
    12. Volunteer coordinator (I was paid, the volunteers were not)
    13. Psychologist on a mobile psychiatric crisis team in Australia
    14. Drug counselor
    15. Case manager for people with chronic mental illness
    16. Family therapist
    17. Psychiatric hospital intake coordinator
    18. Insurance quality improvement project coordinator
    19. Psychiatric inpatient therapist
    20. Commercial real estate broker
    21. Writer (Okay, so I haven't been paid for that one... yet)  

For good measure, here are the temporary jobs:

  1. Clearing fire trails in the woods
  2. Placing grass seed and fertilizer on bails of hay, running them through a chipper and shooting the mix onto hillsides for erosion control
  3. Janitor
  4. Cutting down trees in suburban neighborhoods
  5. The brewery job
  6. Railroad welder's assistant
  7. Cleaned up an oil spill at a manufacturing plant  
  8. Kool-Aid stands
  9. Door-to-door sales of cookies, light bulbs, newspaper subscriptions, and box cutters

Whew.

7.   I have two adopted sons, a stepson, and six grandchildren. Matt is in Montana, and Mike is a missionary with his family in the Philippines. My stepson Aidan and his family, who live nearby in Vancouver, Washington are the ones we get to see the most often.

And now for my final duty: Tell you about fifteen blogs. These blogs don't need to be about cancer, but that is of course where my focus is these days. Here are my favorites, in no particular order:

https://craigblower.wordpress.com/: Craig’s blog: Lung cancer with a dose of humor and an upbeat attitude. And graphics that make me laugh.

http://lil-lytnin.blogspot.com/: Tori Tomalia’s blog: Full of warmth, thoughtfulness, and a deep look into the experience without any self-pity.

http://thrivingwithlungcancer.com/: Beth's blog name says it all.

http://lisa.ericgoldman.org/: Lisa goes right to the heart of key issues confronting people with lung cancer.

http://lunaoblog.blogspot.com/: Living through Luna's experiences, like the false positive on a test of cancer growth... and what she learns from it.

http://www.tamiboehmer.com/: Tami is inspirational not only for her own long-term survival, but also for all of the stories she shares about others who are doing the same. Straight to the heart.

http://cancergrace.org/lung/: Run by professionals that are very well tuned in. They provide resources and a forum for discussions.

https://embenkickscancer.wordpress.com/updates-on-emben/: If you want to read how a young adult can pull off dealing with cancer, prepare to have your spirits lifted.

http://www.freetobreathe.org/news: Another professionally run site with great personal stories and cancer news. 

http://grayconnections.net/: Janet shares not only her own experience, but also the latest research "translated from geek to patient-speak." She is doing a tremendous service for the entire cancer community.

https://celpeggy.wordpress.com/: A go-getter who is staying on top of cancer.

https://www.inspire.com/: Venerable site with just about everything you’re looking for.

http://suek.weebly.com/snippets-my-blog

http://www.linkofsupport.com/: This breast cancer support site provides education, inspiration and support with a lightness of heart.

http://lungingitup.blogspot.com/: "A 22 year-old girl beating lung cancer" who is all about living with cancer rather than worrying about dying from it.

So that's my list. If you get time, check out some of these other blogs. You will come back here, though, won't you?

Love,

Dann