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

New Lung Cancer Drug Approved

A promising immunotherapy drug for lung cancer, Opdivo, was just approved. It's not a magic bullet, but it is one more weapon in the arsenal against lung cancer. See http://www.cancer.org/cancer/news/news/fda-approves-opdivo-nivolumab-for-lung-cancer for a brief summary.

My hope has always been to stay healthy long enough to be eligible for whatever the next new treatment will be. With more immunotherapy drugs in clinical trial right now, every day the picture gets a little brighter. :-)

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

Cancer Clinical Trials


Twice in the last week, I have been in contact with people whose current treatment is no longer effective. This is a critical decision point. The options seem to be:

1) Get a second opinion; or
2) Find a clinical trial that matches your specific needs.

Last week I listed my favorite blogs. On one of them, https://www.inspire.com, I found a link to a website where you can match your particular cancer (lung and all other cancers) and your specific circumstances to the entire pool of clinical trials. Here is the resource:
http://www.emergingmed.com/networks/LungCancerAlliance/

It's not perfect, but it does narrow the field a bit. It may even be useful to print out the list of possible clinical trials and bring them with you to your next appointment with your oncologist for discussion.

I hope you find this useful.

Dann

 

Healing Light, Swedish Style

My eyes and heart continue being opened further with the beautiful images of light that so many of you have sent.

Marika sent these stunning photos she took of the light in the evening and in the night in the Stockholm Archipelago last June.

"The sunset is around 9:30pm, followed by a picture of the bright night – taken around 11pm. I hope you can feel it :)"

I hope everyone can feel it. What healing images!

Thank you again, Marika!

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

Patience: Be the Bear - February 4, 2015

Friends and Family,

Remember how I had an Attack of the Whinies the last time I wrote? It was partly about my back, and partly still feeling grumpy about my last CT scan, which showed one little critter shrink… while another one grew.

What Dr. Patel said: “Your cancer is stable.”

What Mister Rabbit Ears heard: "One of the mutants found a way around AZD9291. Your lung spots are expanding faster than urban sprawl.”

Yes, that’s one small step for man, one giant leap for Dann’s disaster-focused imagination.

However, my mood has been improving since last week, when I asked Dr. Patel to explain how he could call the last scan stable.

“Pshaw! That spot that grew was so tiny, it’s probably just an odd speck of non-cancer! Even if it does turn out to be cancer, it’s isolated, so we’ll just give it a few zaps of radiation and put it out of its misery. It’s not an army, it’s at most one stray soldier.”

Okay, so those words aren’t exactly what he said, but close enough. I’m calmer now. Really.

My mood is improving even further because of progress with my back. Pit bull determination paid off, so I got a cortisone injection last Friday from Dr. Payne (Dr. Mark Kallgren). I just couldn’t tell how much it paid off until I went to my PT today and found out how much better I can move. I should get the full cortisone effect between now and next Wednesday. Here’s hoping the progress continues, because, well, I need to take lessons on patience from the bear.

Time to start meditating. Be the bear.... be the bear...

Love,

Dann

Virginia's Bursts of Sunlight

My request three weeks ago was to " Think of sunlight shining in on each of the little spots in my lungs, hips and spine, and let that sunshine fry each of the little critters,"

and to send photos that bring this image to life. Virginia sent this to me, but it has taken until now to get it open. It was worth the wait! That is spectacular! There are that many spots in my lungs and bones, so this image showing the sunlight zapping every one of them works really well for me. Thank you, Virginia!

Sunlight and Ducks Make Pretty Good Cures January 10, 2015

Friends and Family,

First, I want to share a memorable vacation with you. It was pure joy. Genevieve and I went to Palm Springs with her twin sister Charlotte and my best friend/brother-in-law, Lorin. With a refreshing lack of pre-planning, we spent a day in Joshua Tree National Park (extraordinary), hiked in the Whitewater Preserve (gorgeous), and Lorin and I took a guided tour of the 3,200 wind turbines in the area (fascinating). We also made a spontaneous trip to the Rose Bowl in Pasadena. We bought discounted tickets from scalpers at the gate. If I could beat cancer the way the Ducks demolished Florida State, I would never have to worry about cancer again in my life! I can’t ever remember having a vacation that was so much fun! Of course, I have an advantage in the fun department. I have laser focus on making the most of every moment. “Live like there’s no tomorrow” turns out to be a pretty good motto.

On to the real news. On Tuesday I had my latest CT scan, and the news is good. The cancer is stable.

So after all the enthusiasm for the vacation, why the lack of enthusiastic excess about stable cancer? Because after the last CT scan six weeks ago, when the cancer had shrunk 60-70%,

I was getting spoiled. I was hoping for a continuing trend that would lead to being cancer-free. I even dared, for the first time since I was re-diagnosed three and a half years ago, to dream that I was on the verge of becoming cancer-free. The bigger the dream, of course, the bigger the crash if it doesn’t come true. Still, I consider it a sign of growth that I would rather risk the dream than try to be numb and lose out on the joys of experiencing a full life.

There were a couple of asterisks that came with this “stable” report. The first is that there were more leopard spots (“sclerotic lesions”) on my hip bones. The radiologist again called it possible cancer growth, while my oncologist again said he thinks it means that the cancer is further dying off and leaving little pockets behind. “The best indicator is that you don’t have any pain in your hips.”

I don’t know what you think, but I’m going with Dr. Optimist. Also, I want to thank Tori Tomalia for reassuring me that she had the same experience, and that all went well.

Tori has an outstanding lung cancer blog, by the way. See http://lil-lytnin.blogspot.com/.

The second asterisk in this CT report is that, while overall my lungs are stable, one spot grew and another shrunk. (“Spot” sounds better than “tumor,” don’t you think?) My best guess is that the ADZ9291 is attacking the genetic mutation it was designed to attack, but since I have more than one mutation, it may not be impacting the other mutants.

I finally found out how AZD9291 works. The cancer disguises itself to hide from my immune system. It puts on a fake beard and sunglasses and tries to blend in with the crowd. AZD9291 unmasks the cancer, so the hero of this story, my immune system, can attack it. What I take from this is that, with cancer, just like with politics and relationships, sunlight is the best disinfectant.

Now that I know this, I’m asking for your help again. In the past I asked you to “think dried prunes” to shrink the tumors. I believe that is one of the things you have done that has kept me alive. This time I’m asking you to help with something that works like AZD9291:

Think of sunlight shining in on each of the little spots in my lungs, hips and spine, and let that sunshine fry each of the little critters.

If you have a photo image of sunlight doing this, I would love it if you shared it with me. I’ll post it on my blog, so that others can benefit as well.

I hope your year is starting out as good as mine.

Love,

Dann

Genevieve's Healing Art #7

Love takes many forms. One of the things that Genevieve has done to help me beat this cancer is to create a series of artwork, which I am including on my blog on an irregular 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."

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

#7

"Thinking positive is a key to healing. Color holds the vibration .The  silver dots  hold the healing properties from the infinite. Each thought can be its own color palette of healing vibration. It will change cellular structure."