Feelin' Groovy

Friends and Family,

Sometimes, everything goes well. Or maybe it just feels that way. Life is a little more relaxing, and little things that might bother you a little bit seem like, well, little things.

Do you have any favorite old songs that pop into your brain under just the right circumstances? Beautiful sunrises sometimes bring “Here Comes the Sun” (Beatles) into my consciousness. But the one that keeps going around in my head lately, is Simon & Garfunkel’s 59th Street Bridge Song. If you want to feel what I’m going through right now, try listening to this: https://www.youtube.com/watch?v=mWBvcJAXwu4. (Disclaimer: You may have to be of a certain age for this to mean anything for you.)

I could be feelin’ groovy because a couple of months ago, Genevieve and I started meditating every day. I visualize being cancer-free, and try to take that experience and feel it as if it is happening in the present. According to Joe Dispenza, whose workshop we attended, this will help you create your own reality. Quantum fields are involved. I don’t know about that, but I do know it feels pretty great anyway. I’m going to keep it up.

My mood could also be this good because we’re in Hawaii right now. Yesterday, Genevieve pointed out to me that I always look more relaxed while we’re out here, even if I am working at commercial real estate 3-5 hours a day. Five mile beach walks with very few people around definitely help. Sitting on the bluff at sunset taking pictures – counting this trip, about 842 million of the same scene so far – puts me in a relaxing mood. It’s just so beautiful and peaceful. Maybe the glass of wine helps, too. :-)

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There is one other thing going well. It’s my marriage, which began exactly 21 years ago today. I’m calling this our champagne anniversary, and not (just) because champagne is cheaper than diamonds or silver. Our marriage is now old enough to drink! This relationship brings me a level of happiness that is far beyond what I imagined possible, right up until I was in it. Genevieve is simply wonderful, and we are both better people together than we were without each other. Life is so much richer with Genevieve in it.

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The only thing causing me a little impatience right now is getting my book published. I could launch it myself within a week, but my brother Mike convinced me that, if I want this to be a success, I really need to have a book marketing firm involved. I have three names to contact and interview. After that, a book launch plan could take many months to do well. Since the goal is to get the word out to as many people as possible, I will have to at least ACT with patience. I will confess that there are times when I have wanted to get the book out ASAP, since I never know how long my health will remain stable. However, since I keep defying the odds and staying healthy, I’m willing to risk it.

The last thing to tell you is that I don’t have any scan results yet. That comes in two weeks. While my body goes into occasional panic mode, my brain reminds me that I have no symptoms, and I’m already the exception to how long this treatment usually lasts.

Hope that you’re feelin’ groovy, too.



Profiles in Lung Cancer Day 5: Lysa Buonanno

In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show you the many faces of lung cancer.

Today's lung cancer survivor and spectacular advocate is Lysa Buonnano, who impresses me more each time I talk with her!

Twitter handle: @thelysabee

Blog: https://lysabuonanno.wordpress.com/

How are you connected with lung cancer? “I was diagnosed with Stage IV lung cancer four years ago. I have been through chemo, radiation, four surgeries, and now targeted drug therapy (my miracle pills).

How do you spend your time? “I have done eight advocacy trips in the past four or five months, such as testifying on Capitol Hill to increase funding for cancer research, and doing other public speaking. I'm also a Lifeline mentor with Lungevity, and I'm a peer reviewer for the Department of Defense's Lung Cancer Research Project. I do something to support people that I know with lung cancer at least once a week, such as researching treatment options, and helping someone in my support group get insurance benefits for treatment. When I’m not doing advocacy, I spend a lot of time with my daughter and my family.”

How did you first get involved with advocacy? “I connected with my local chapter of the American Lung Association, and I have become their spokesperson for television and other media. That led to getting paired up with the national office of the American Lung Association. They fly me to D.C. a couple of times a year to meet with congress.

Why are you an advocate? “This is my way of giving back, and contributing to other people. I want to give other survivors hope that their life can still carry on.”

What does a typical day look like for you? “I get up and turn on my tablet to check emails, and then I do an internet search. I have Google Alert set up for key word searches: ‘Lung Cancer,’ ‘Medical Research,’ and ‘ROS1 (my genetic mutation).’ After that I try to have time for coffee on my patio. I enjoy looking at my waterfall.”

What gives you hope?  Research, and other survivors. To know ten-year survivors and to learn about all the new clinical trials makes me think I'm going to be around for a while!

What is something that people may not know about you? “I’m teaching myself to paint. I’m not great, but it’s therapeutic.”

“I made these for my kids. My daughter is a big Marilyn Monroe fan, and my son plays the guitar.”

“I made these for my kids. My daughter is a big Marilyn Monroe fan, and my son plays the guitar.”

Do you have a guiding mantra you live by? “Every day is a gift… even on my not so great days.”

What else do you want people to know? “Anybody with lungs can get lung cancer. It doesn’t discriminate.”

To see yesterday's profile, go to http://bit.ly/1PnCeYI.

To see tomorrow's profile, go to http://bit.ly/1Wx8sXo.

To see the profiles for the entire month, you will find a link at http://lcsmchat.com/profiles-in-lung-cancer/.

An Open Letter to the Newly Diagnosed

Dear Friend,

There is so much I want you to know. Let’s get started:

1.       Have hope. Cancer treatment is exploding right now. It’s just incredible how fast things are changing – for the better.

2.       Finding out is the hardest part. The first days, or weeks, are overwhelming for everyone. You will get past this - we all do. Just remember that what you are going through right now is harder than everything else you will go through. Everything else combined. The reason? You don't have any tools to deal with it yet. That will change.

3.       Let people in. My life is much richer and more full of love now than it ever was. That only came from sharing my trials and vulnerabilities. I have no doubt that I am alive today because of the love of, and for, family and friends. Rarely people vanished because they couldn't cope with my cancer, and I can understand this. Much more often, people surprised me with their outpouring of caring and love. Take the risk. Still it's easier if you...

4.       Plan how you are going to share your diagnosis with others. I found that by emailing people I cared about before talking with them about it, it saved me from endlessly re-living those first moments after being diagnosed, after the cancer had grown, or spread, or didn’t shrink when I had high hopes. This gave friends and family time to compose themselves before they talked with me, and because of that, the conversations went much better. This way I could also set the tone that I hoped that they would reflect back to me. It works.

5.       Throw the statistics out the window. If you've been diagnosed for longer than 12 hours, you have probably already done an internet search and tried to calculate your survival odds and/or your new life expectancy. Finding statistics that match your specific situation is nearly impossible. For example, the average age of diagnosis for lung cancer is 71. I was 49. Do you think treatment outcomes will be the same? General health, environmental factors, location/size/number of tumors etc. – there are too many variables to make the stats make any sense for an individual.

6.       More importantly, whatever statistics you find are probably hopelessly out of date. New treatments are coming online too fast for the statistics to keep up.

7.       A diagnosis is not a prognosis. I was at the LUNGevity HOPE Summit a few weeks ago with 150 lung cancer survivors. Most of us attending have, or had, Stage IV lung cancer, and a dozen have been alive for at least five years. If that's not enough, I am your living example. I was first diagnosed nine years ago. The same diagnosis yields different results for different people.

8.       Do your homework. Your survival chances are directly related to the quality of the treatment providers you work with. Is your oncologist a specialist in your specific type of cancer? As a general rule, the more people that your doctor and your treatment center have treated that have the same type of cancer as yours, the higher their success rate. Experience makes a difference. Who are the recognized experts in your type of cancer that are within a radius that you are willing to travel?

9.       Get molecular testing. The most promising breakthroughs in cancer treatment are at the molecular level. This includes both targeted genetic treatments and immunotherapy. If your oncologist doesn't think you need it, consider the possibility that your oncologist is out of step with the latest research. You may want a second opinion.

10.   Re-think clinical trials. "Clinical trials" used to be considered the last gasp desperation approach to treatment. The reality is that, for lung cancer and many other types of cancer, this is where you will find the most promising, cutting-edge medicine, with the best results, and with the least side effects.

11.   Exercise, sleep, and diet all make a difference. They impact your mood and your ability to cope. More importantly, you will recover from medication, radiation, and surgery better and faster if you are in the best shape you can be. Take care of yourself. Exercise, sleep, and diet. In that order. One man's opinion.

12.   Attitude matters. Treasure the moment. Live in gratitude for what you have right now. Choose hope. These things not only improve your quality of life, they also improve your chances of living a longer life.

13.   Love yourself. Treat yourself like you matter. Because you do. This may be your last chance to act like it.

14.   Choose your own path. I’ve laid out the way I see it. You may see it differently. Find your own vision of the future, and own it.

If you are newly diagnosed, I wish you the very best in your journey. Contact me if you would like. If it has been some time since you were diagnosed, I welcome your comments.