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/.

Turtle Rescue, Meet Your Ambassadors, and More

Friends and Family,

What a week! First, there were turtle rescues.

No, not THAT kind. Rescue OF turtles, not BY Ninja Turtles. The second option would stretch believability even more than if I told you that I was still alive after nine years with lung cancer.

No, I'm talking about rescuing REAL turtles. That means we're back in Hawaii again, taking our usual morning beach walks. Only this walk was far from usual. First, we  came across this distressed-looking adult turtle, out of the water, baking in the sand.

While Genevieve called the Turtle Rescue hotline (yes, there is such a thing in Hawaii), I found a five gallon bucket and poured ocean water on the poor turtle.

Meanwhile, the Turtle Rescue man told Genevieve that finding this turtle on the beach either meant that it was in distress, or that it was taking a nap.

When I poured the bucket of water on the honu (Hawaiian for turtle), it immediately did a 180 degree spin in the sand and headed for the ocean at full speed.

So depending on your point of view, we either rescued this poor turtle, or made him grumpy by waking him up from a good nap.

Next, on the same walk, we come across a family with a young boy that has been stung by a Portuguese Man-of-War, which is a tiny blue bubble of a creature with a three-foot tale that feels like a bee sting on a string.

The boy had been touched on the leg, chest and arm, and welts were forming. Genevieve instructed us to get the white berries off the naupucka shrub that grows just about everywhere along the beach. We gathered berries, mom rubbed them in, and the boy immediately got some relief. Genevieve told them to go to the ER if symptoms worsened or he had difficulty breathing. The mom thanked us for the instant relief, and for saving the family a trip to the ER.

This stuff never happens, but this day EVERYTHING was happening. We were almost back to our beach house, when we saw a fisherman struggling to get his line out of the water. At first we thought he had a snag, but eventually we saw what he was reeling in: You guessed it. A turtle.

I offered to help. He reeled it in until I could grab the turtle and lift it by the shell. I held it while he ran back to get his pliers, and then pulled the hook out of the poor turtle's mouth. Once it was out, I let the turtle loose in the water, and he swam off at Olympic speed. He didn't even say thank you, probably because his mouth was too sore.

So I'm starting to think that this is why I'm still alive: To rescue turtles. But then Genevieve reminds me that we have been invited to be ambassadors.

Sounds impressive, doesn't it? Now you're wondering, "ambassador of what?"

I guess "Cancerland" would be the best answer. This is four-day speaker training program in Chicago, so that Genevieve and I can become more skilled at public speaking, and then speak at regional cancer-related events when the opportunity presents itself. Now THIS has our full attention. I can't think of anything more fulfilling than providing hope and inspiration for other people that are going through what we're going through.

Last, but number one on my mind for the past couple of weeks, I want to give you an update on my friend Craig Blower. Craig and I have been on parallel paths with Tarceva and then AZD9291 for the past almost three years, although Craig started AZD9291 a few months before me. He has had growth in his existing spots, and metastasis to some new ones. The treatment course is unclear at this time. He is asking for virtual hugs across the miles. If you are so inclined, visit https://craigblower.wordpress.com/ and say hello. It would mean a lot to him, and to me as well.

Love,

Dann

 

Is Cancer Too Profitable to be Cured?

If you have been diagnosed with cancer for any length of time, then no doubt friends or family members have forwarded information to you about miracle cures from alternative sources that the medical community doesn't want us to know about. Inevitably, the information includes a statement that the cure has been kept from the public because "cancer is too profitable to ever be cured. This question was responded to on a public forum by Dr. Jack West, who is medical director of the thoracic (lung) oncology program at Swedish Cancer Institute in Seattle. Here is his response:

"As someone who cares for sick cancer patients every day and sometimes at night as well, a demanding job that takes a significant emotional toll, I'll start by saying that although I know you are only one of many people who is cynical enough to think along these lines, the question is callous and betrays ignorance.

First, cancer is not one disease but many. In fact, many cancers are cured, and we have made great advances over the past several years and decades.   I have many patients alive now who would have died had it not been for the efforts by my colleagues and myself.

Second, people who suggest that there is a cure for cancer available or readily attainable but not pursued because it's more profitable to continue the status quo have absolutely no concept how difficult an opponent cancer truly is. Cancer is cancer because it grows faster and better than the other tissues of the body, and its job is to mutate over time. That means that cancer cells throughout the body are not the same because they have different mutations, making some resistant to a treatment that is effective against many other cancer cells.  Even if a treatment is effective against 99% of cancer cells, the remaining 1% of cells that are resistant can not only survive but grow and divide and repopulate to create a newer, more and more resistant cancer. This is exactly what happens in many cancers, which can have dozens and dozens of different mutations in a single cell.

Third, I find it puzzling why people who suggest a vast conspiracy to avoid curing cancer ignore the unfathomable financial windfall for the company or institution that actually cures it. If you could cure previously incurable cancers, a company/doctors could charge an unprecedented amount for the treatment, even if they didn't need ongoing treatment. I assure you doctors would rather cure cancer than watch patients they care for decline and die despite their great efforts.

This prevalent theory that cancer may be too profitable to cure is perpetuated by ignorance, like climate change denial.  Unfortunately, there are always people who will abjectly refuse to recognize reality and continue to perpetuate ignorance.  I hope that after asking the question and getting a cogent answer that you aren't one of them."

You can see more from Dr. Jack West at one of my favorite websites, http://cancergrace.org/.