Keep writing, your voice will be heard by someone, sometime.

Keep writing, your voice will be heard by someone, sometime.   I wrote a letter to the editor earlier this year.  I wrote again and it was published this time.  There’s a limit to the number of words, so I didn’t include everything I wish I could have.  Also, some of the links aren’t live and read as words only, but it was published!

Free ME from Lung Cancer Free ME from Lung Cancer , a Maine nonprofit has funds for single family home radon abatement.  Testing your home is easy and cheap.  Abatement is done professionally and may be easy and inexpensive or it may be $5000.  Thankfully, there is help for those who need it. There are a limited number of home abatement “sponsorships” through Free Me from Lung Cancer.

Letter to Ellsworth American: Don’t Ignore that Little Cough-Cough

The fire, our fire (2015)

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This too will have a happy “ending”, so don’t get too bogged down in my telling of our “struggles”.

First, if you have a house fire, and have homeowner’s insurance, a great resource is United Policy Holders. “United Policyholders (UP) is a non-profit 501(c) (3) organization whose mission is to be a trustworthy and useful information resource and an effective voice for consumers of all types of insurance in all 50 states. ”  Here’s a link to their handbook Disaster Recovery Handbook and Household Inventory Guide

On August 17, 2015 there was a fire in our house.  We were not home.  It began in the basement and may have smoldered for a day or more before Dan came home from fishing to discover it. I’ve only written about it in a rather offhand way, thinking it was overshadowed by the cancer that crept into my body at this same time.  The cancer that had been smoldering for months, likely there even in April 2015 when I carried a 30 lb. pack on our Grand Canyon backcountry backpacking trip.  See, doing it again, cancer taking over.  The reason though surprises me.  I think I let cancer take over the conversation because I’ve not been willing to understand the toll the fire took, that fall and since.   I’ve not faced the fire with the same emotional determination and strength that I have the cancer.  So, now I will.

That August afternoon was Dan’s second terrifying event in just months.  Earlier that year he had had to ground out his boat as it was sinking when alone on the water.  He had been in a boatyard for repairs and was headed back out to sea to make the trek home to Blue Hill harbor when he felt something wasn’t right in how the boat was moving.  When he looked in the cabin, it was filled with water.   A hose, not properly secured, had come off and water was pumping into the boat at an alarming rate.  No time to call for help.  Thinking he could reach the closest shore, he managed to save both the boat and himself.  There were so many things that could have gone so much worse in that situation.  He was clear headed, quick thinking, and smart about what to do, and it worked.  It is still scary to think what could have happened if he had been further out to sea, where he was headed.

When Dan arrived at the house after a long day of fishing on August 17, 2015, he likely was only thinking about taking his shower and heading to camp.  He opened the kitchen door and went to step in, but was met with  thick, thick dark air.  He thought he might be able to do something as he couldn’t see or feel any fire.  He entered the house, but he quickly realized that was a bad idea.  He found his way back out and made the necessary calls to sound the alarm.  How terrifying.  And still, our house from outside looked perfectly ordinary.

When Dan called me I was just ending another great day of Camp Gramma.

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All I remember was ordering him to stay out of the house.  I think he’d already been in twice at that point and had figured out that it was coming from the basement. (He doesn’t mind well!) When I arrived the fire department was there.  The point of origin in the basement was quickly dealt with and no water had to be used.  But, over the course of a day or more the smoke from an electrical fire can do horrible damage.  Everything, from basement floors to the ceilings of the second story, and everything in between, was covered in a thick, black, oily soot, and strange, black cobwebs.  The fire department had turned off the power, and a neighbor electrician came by to assure that everything was off and safe.  When the fire chief asked me how I was doing, I answered “fine”, and I think I was. A little shaken, but fine.  I remember sending some texts to let family know what happened and that we were okay  in case they heard.  Everyone was safe, and we’d figure it out.  (We have, but what a process it has been!) And, how bad could it be?  From the outside the house still looked perfectly normal.

And like so many people at times of a disaster, here’s where we entered a world we had no experience with.  I always think positively of someone until/unless I have reason to know differently.  I expect professionals to be and do what they present themselves as.  Naive, I guess.  “Pollyanna ish” perhaps. But seriously, taking advantage of people in times of emergency, disaster, loss, it is just so wrong.

That evening I called the local insurance agent.  He had a buddy that worked for a cleaning and restoration business specializing in fire clean-up and gave me his number.  “Good,” I thought. “Get the ball rolling and find out what to do.”  I didn’t know it then, but that was the beginning of a nightmare that only recently has been downgraded in my mind to a bad dream.  We’d only had one other claim on our house insurance in 40 years, and that had turned out fine.  And, how bad could it be anyway? The house looked perfectly normal from the outside.  (Huh.  Just like me.  No one would know by looking at me about the battle going on inside my body between Queen Lorlatinib and cancer.  Huh.)  A little clean-up in the house, replace some stuff – it’s only stuff – and we’re back in business.  Doesn’t work that way. Especially when the job foreman is either inexperienced or incompetent (he seemed like a nice guy), and his boss turns out to be quite shady.

The morning after the fire we met with the Cleaning Foreman.  We did a walkthrough and he indicated that most things could be cleaned.  He did say that the clothes could not be saved, and would have to be inventoried.  So here’s how this part of process works:  if  all your things burn and you don’t have any records of them  (like photos, serial numbers, etc. in a safe deposit box), then you have to recall everything you owned so you can account for it in an inventory that you present to the adjuster.  That’s where that handbook comes in handy, with lists for every room. But in our case the things were there, just ruined.  So on that first day the Foreman said that I could go ahead and identify and record every item of clothing, and bag it up for the Cleaners to take when they arrived (which couldn’t be immediately).  That’s just what my sister and I did, handling every item of clothing in the house.  You can accumulate lots of clothes when you really don’t change size or style much over the years.  I still can’t believe the mountain of contractor bags in my kitchen, or that we actually listed every item, brand included – but it matters.

Picture all the contents of your home.  Imagine trying to make lists of each and every item; it’s brand and age.  Then, try to think about having to find replacement costs for each and every one of those items.  That’s what is expected of you if you want the actual value of your possessions. At least this became our experience and that of others I’ve talked with.

The second day after the fire the foreman returned with a person or two who would be working at our house.  We asked how long we would be out of the house as we were staying at our camp, but couldn’t all winter (or so we thought!).  We were told we should be back in in a month (mid September), and certainly by the time we’d need to move home.  That was a relief.

Enter, the insurance adjuster.  Let me tell you right now insurance adjusters do NOT work for you They work for the insurance company, and in our case the insurance company wanted to get out of this claim paying as little as possible, with little consideration to making us “whole”.  I’m sure there are kind, helpful adjusters – I even decided to become one after retirement, but I didn’t get to retirement… All I know is we didn’t get one that even wanted to play fair, and it took us a few weeks to understand we weren’t even playing the same game, let alone being privy to the rules of his and the cleaning company’s game.  Insurance adjusters may be friendly, but they are not your friend.  Don’t let the friendliness fool you. It may quickly disappear when you get your wits about you, begin to understand the game, and start playing smarter.  And, know that your insurance company’s adjuster assigned to your case (who really did seem nice) may be sitting in her office, while an independent adjuster really handles your case.  Every time you call her, she needs to talk with him, and around we go!

Also on that second day, we met Mr. Adjuster.  Friendly, assuring us we’d be well taken care of by him and by Cleaning Co.  I should have realized that these guys acted like they always work together.  We just thought they were working for us.  After all, we pay for our insurance, and we signed a contract with the Cleaning Co.  Kind of like ambulance chasers, how well prepared they were with paperwork. The walkthrough assessment with both men together sounded like we’d have to replace some appliances and  all electronics, that often in a few months after a fire they quit working.  In fact, they whisked away our televisions, generator, and some electronics pretty quickly. Now I think, hmmm.  Also in the assessment it seemed still that most things would be cleaned, and the house could be cleaned.  Some things we knew we’d have to argue over, like the adjuster saying the microwave over the range could be cleaned.  Really?  Cook that oily soot meal after meal?  I don’t think so. Especially after whisking away the generator that might stop working due to the soot.  Hmmmm.

But these professionals didn’t think to tell us things like to remove the guns from the house before the barrels rusted, or my antique magic lantern, which could have been saved if removed early.  Any metal in the open that gets this smoke soot on it rusts badly and fairly quickly.  That is a fact known to those in this profession.  And then, Mr. Adjuster decided the clothes could be cleaned.  So, all that work inventorying…ugh.  Off went our clothes, even the socks with no mates, to be cleaned using a special process in a special machine using a special cleaner.  Even my old undies along with those socks with no mates.  The cleaners seemed surprised, but happy to comply.

And all the while our home looked perfectly normal from the outside.  When the dumpster arrived, and the company sign was posted out front, people likely thought we were doing a renovation. Maybe the large storage container on the lawn made them wonder.  Turned out they’d be correct about that container, but that wasn’t Mr. Adjuster’s plan. No, he was sure a little cleaning was all we’d need.

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Mr. Adjuster was delighted that we were already staying at our camp.  He didn’t tell us that we were entitled to any compensation for being displaced from our home.  In fact he said he didn’t think we were, even when asked about it.  That’s about when we started to learn the rules and play a little smarter.  I felt sure from reading the policy that we should be compensated in the same way as if we had to stay in a motel or find a rent.  Yup, sure enough, the real adjuster, in her office – no soot there, said we were.  That was the first of many lies or misleading statements that we were told by Mr. Adjuster, the Cleaning Co. foreman or his boss.  It was when we started to become strong advocates for ourselves.

For a few weeks the Cleaning Co workers and I worked happily side by side going through all our things, sorting which to clean and store (either at the company or in the container), what to inventory and throw. I thought it important to be there, both to make the work go faster by helping and to answer any questions they might have about how important it might be to try to save any specific item.  It was hard to see things I’d saved and things I loved be thrown away, but I knew it had to be done, and it was after all “only stuff”.  That soot had even seeped into closed totes and boxes.  I put up a canopy and some chairs in the yard for a break space for the work crew as the house was so, so nasty and starting to smell bad in the August heat and humidity. I kept one set of clothes to wear at the house.  None of the workers wore masks, everyone should have.  I remember the kitchen table’s finish becoming all sticky, and thinking that I’d need to document that somehow.

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It became evident at the  pace that sorting the contents was taking, that it would be a long while before we’d get back in.  During this time we started asking more and more questions, and reading and researching to try to determine what we could and should demand regarding the actual house.  When school started I took some leave time from teaching, splitting my week between school and working with the cleaners.  Finally we got to the point where they started cleaning the house, from bottom to top was the plan.  They used special sponges and started wiping the basement walls.

We wondered if we would be in the house by Christmas.  We insulated the camp bedroom, purchased a heater for the room, and insulated the water pipe.  I’m sure camp helped save us, made it all okay.  We saw that part as a fun adventure, staying at camp longer into the fall.  Hard to be too stressed living in such beautiful surroundings.

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And then came the day that the clothes came back.  Even though it had nothing to do with the cancer, it is the first day of many that I felt very ill. The newly cleaned clothes were returned to the storage container in boxes and on a hanging rack.  I stepped into the container to check the condition of some items and I immediately knew the odor was going to bother me.  I ended up leaving that day with the first of several severe headaches triggered by the clothes.  As the weeks progressed, so did my illness.  Maybe the ROS1cancer growing in my lungs reacted to all the soot, stress, and then the scent of the chemically cleaned clothing tipped the scale. And to top it all off, the clothing was worn, yellowed, and misshapen from the cleaning process.  Mr. Adjuster still thought they smelled and looked fine, and thought we should be happy and keep them.  My words, tone, and body language in our meeting about the clothes should have made him realize he was going to lose that battle. I couldn’t keep them even if we never recovered anything for them.  They made me ill. Too bad he wasted $6,000. of the insurance company’s money on cleaning those clothes, the clothes we first were told to inventory on day 1…  That inventory list was used after all.

What a battle it was to get the things that needed to be replaced, simply replaced. So much time and money was wasted cleaning things that could not be saved.  Two years I worked on it, but it was a full-time job for several months.  People with less time, fewer resources and skills must just give in or give up.  I’m sorry for them.  They are being taken advantage of when most vulnerable.

Then came the issue of the house.  Luckily for us, there were unfinished spaces in the house.  It was in these spaces where it was evident to us that the soot really had gotten everywhere, not just on surfaces, but in every thing and place.  So room by room, we made our case to Cleaning foreman and Mr. Adjuster. Of course it seeped into outlets and in the insulation.  Of course it was in the ductwork.  Of course, of course.  Finally one of the workers got permission to cut test holes in all walls and OF COURSE it had permeated EVERY THING EVERY PLACE.  Finally. So the decision was made to do demolition of the house, our home, inside down to the studs, so it would just be a shell, no inside walls.  That brought one of my saddest moments – when they tore out the kitchen cabinets Dan’s grandfather had so lovingly built for us.  I can still see the day he had me stand where the sink would be so he could make the bottom cabinet and counter top the right height for me.  Not a standard height, but Corinne’s height.  As custom made built-in cabinets they too had to go.

Mr. Adjuster and Cleaning Foreman (who subcontracts restoration) both came up with the same estimates of what it might cost to rebuild our home. They even found someone who could do it for us quickly.   Needless to say, this amount wouldn’t have done much. By then we knew that we needed to find someone else.  We got our own quote that was more than twice their estimate.  Oh no. No way was Mr. Adjuster going to do that – we’d have to go to arbitration he told us and that could take a long time and be costly to us.  Oh well, we replied.  We were enjoying camp in late November.  And then Mr. Adjuster said he could get another quote from another contractor that does restoration quotes and that he (Mr. Adjuster) would go with that quote.   He was hopeful we could accept this independent quote as valid and reliable.

Now, if you’ve read this far, comes the happy part, the point where much turned around for us.  And for this we can thank Northeast Restoration.  Jon, Cathy, and the rest of the crew there saved our home and probably our sanity.  Jon was the person who came to do the quote.  After meeting him and receiving the quote (that Mr. Adjuster wasn’t all too happy with). we felt greatly relieved and immediately asked if their company could do the job.  Yes!  Christmas at camp, but in by ….?  All okay though.  We just knew it would be okay.

And then through working with our new advocates we learned that we didn’t have to keep many of the not so clean items.  We didn’t have to keep the clothes.  And we met Cathy.  She knows how to help someone who has had a fire.  She knows what to keep or not, how to inventory, how to clean, and how to advocate for the fire victim she is working for.  She can advocate for you with the adjuster (not ever seeming to be working for him!) and she is just so knowledgeable.  Why we couldn’t have found them first I don’t know, but once we did all was going to be fine.  Even when cancer took over our lives in January, they were here at our home, working and advocating FOR us.

Things are not so clear for me in those next months because I was so busy breathing, working on staying alive.  Dan and I had worked with Jon to make some improvements and transformations in our home.  The crew magically made it happen.  They gave us lists of things we’d need to make decisions about. We chose our lighting with my sister  and her husband. My artist friend Kathy helped me make the house colorful like I dreamed of, but in such a beautiful way.  We removed a second floor bedroom and made our living room all pine with a beautiful space for our wildlife mounts. We hadn’t anticipated having our house torn apart, but took advantage of this opportunity to add some funds to the rebuild $ and do some nice things to take us into our old age.  Like moving our washer and dryer to the first floor from the basement.  What a blessing that’s been already!

What fun it was for us while in Boston (for my treatment) to receive pics from the Northeast crew of every step along the way.  Then when we came home for the weekend Dan  would come up and see the changes.  Winter passed and just as spring arrived things were nearly ready for move in.  Again my sister came to the rescue by buying all the things a household needs to get started.  Window shades, waste baskets, towels – and so much more.  You know the stuff. That handbook I mentioned helped us to think of everything.  At that point we’d replaced our furniture and appliances in two short trips locally, but hadn’t gotten any of those small essentials.

And so, the happy “ending”.  We love our home.  Dan built it with family help.  We raised our children here. To us it is beautiful.  Colorful walls with natural pine trim.  A fresh start at a tough time.  No clutter because we only buy what we will use and try to have a place to keep it. (And actually keep it there!  I’m not known to be tidy, but now I can be!)  Slowly we’re getting used to finding things in different places than they were for forty years.  And, it still looks perfectly normal from the outside.

There. I’ve done it. I’ve tried to write this several times, but needed to stop.  Finally it is in the past and I can now get back to what I do best.  Finding joy in the everyday every day! Watching the deer, chuckling at the tom turkeys doing their dance, spotting the snowshoe hares, and seeing the birds change color right before my eyes.  Here, at home, our home that we are so blessed to have.

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Be your own Advocate

Today I went to my PCP.  I’ve had a hard lump on the bottom of my foot that appeared as part of dealing with neuropathy.  Dr. PCP seems to think it is unrelated to my neuropathy.  She/he also thinks the nodules on and inflammation of my finger tendons is also unrelated.  Funny coincidence, both are caused by trauma, both involve inflammation, and both happened shortly after the neuropathy began in those appendages.  I know better, but at least today  Dr. PCP confirmed for me that it isn’t something more serious.  It wasn’t worth trying to convince Dr. PCP or to argue the point.  I will share my observations with my clinical trial team.

What was more traumatic was that I was in the room where I first was told I had a mass in my left lung hilum.  Sitting there waiting today was unpleasant, thinking back to January 7, 2016.  I’m not sure Dr. PCP knew what the hilum was that day.  If she/he did know then, she/he couldn’t explain it, having to look it up.  The hilum is the point of entry and exit to the lung.  KenHub explanation of hilum “Functionally, this means that the hilum aids the lung roots by anchoring the lungs to the heart, trachea, and surrounding structures.”  Left hilum, near the heart in addition to having an important job.

But, that was then and I’m here now.  And, I made the choice to stay with the PCP who missed my illness totally, despite my visits, calls, and pleas for help that fall. I am so grateful to the walk-in clinic FNP who had the good sense to do the x-ray that saved my life.  I stayed with Dr. PCP because of convenience.   I would not have stayed for my treatment, choosing to go to Dana-Farber saved my life.  I have hoped that this experience would help inform Dr. PCP about lung cancer symptoms, that she/he might listen more carefully to patients, that she/he would believe the patient when they are clear that what’s going on isn’t a long lasting cold.

But, today for the first time I felt angry.  Not because of the lack of, or misdiagnosis.  That’s every Stage IV diagnosed lung cancer patient’s story.  I forgave him/her that day he/she had to give me the news.  Today really started last week when I called to try to  see Dr. PCP.  I explained why I needed to be seen, and was told that Dr. PCP was booked into July.  Hmm, I thought.  Then I laughed.  It does seem like a funny situation for someone who is already past their statistical expiration.  (I inherited my mom’s sense of humor.) The receptionist must have been confused by my response, but then she did tell me that if I called at 7:30 AM any day I might get in to see my doctor or another.  So, I weighed my options and decided to call this morning.

So after waiting in the room with the unpleasant memory playing over and over for 15 minutes, Dr. PCP came in.  Once we completed the purpose for the visit, Dr. PCP asked how I was doing.  Since I hadn’t been in for quite a while I explained (as succinctly as I could) about the  leptomeningeal cancer progression, entering the clinical trial, and the success (80% reduction) of the new drug Lorlatinib.  Then came the part that I felt angry about (and is already forgiven and soon to be forgotten).  My PCP, the one who seemed interested, said, “Well, I think they send reports to us so why don’t we just schedule an appointment in six months to check in.”   He/she didn’t even know if Dana-Farber sent reports, hadn’t even peeked at my chart to see what was up before coming in to the room, had no process in which he/she checked on his/her patients with metastatic cancer, and he/she thought it would be nice to check in in six months.  And me?  Silly me.  I stopped at checkout and scheduled that appointment.

Recently I saw FB posts singing the praises of Dr. PCP.  Before cancer I would have said to anyone asking about this doctor that you’d have to do your own follow-up, that Dr. PCP doesn’t always call promptly with lab results, mammography reports, etc.  Now I would add that if he/she doesn’t care about my case enough to know if Dana-Farber has sent reports (of which there have been dozens in 2 years), then it seems unlikely that he/she is very attuned to the needs of his/her patients.

As we all know, but don’t always remember – you know your own body.  Pay attention to what it’s telling you, and advocate for yourself.  Ask questions, ask for explanations of test results and treatment options, ask for expert opinion, and if you don’t feel confident about any of it, seek another expert opinion. I feel blessed that we made the right choice for us by going to Dana-Farber .   They fill us with confidence in their work and with hope.  Even when the news is not so good, there’s no doom and gloom, and always hope.

Spring seems slow in coming here on the mountainside.  The goldfinches are now bright in color, and tom turkeys are in full strut, dancing for the hens.  Dan and our son are now over in the field daily working on getting the lobster traps ready for another season.  I am truly finding joy in the everyday every day with Dan, the family, our three little dachshunds, and Dottie and Matilda, our spoiled Nigerian Dwarf goats.  And, tomorrow night my children and grandchildren are taking me to see the Wizard of Oz.  Blessed.

 

Nice to be Loved!

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On November 5, 2017 in the very early morning my sister Nada was one of several family members and friends to make a two hour drive to participate in the annual Save Your Breath 5K Save Your Breath 5K FaceBook, a run to support Free ME from Lung Cancer.  It was her birthday.

A few weeks earlier Nada and her daughter Betsy had decided to get together a team in my honor.  Pretty nice!  The team was named for this blog, Team polepole.  And then, t-shirts were made for all eleven team members.  Not just any t-shirts, but hand tie-dyed t-shirts with polepolebreathe.blog ironed on each by Nada. Even nicer!

So on that brisk Sunday morning some of us ran and some walked a shorter distance.  While we were raising funds for Free ME from Lung Cancer, we were also showing support for the lung cancer community; those living with lung cancer, survivors of lung cancer, and also honoring lives lost.  It felt special, much like our family participating in the Komen run in my mom’s memory.  Only different.  Different for a few reasons.  First, our team was participating in my honor.  Wow. Second, while there were quite a few runners, there simply is not the same kind of societal support for the lung cancer community.  Humbling. Next year I’ll ask that we run/walk in memory of my dad too. We can now see beyond the stigma and understand.   It’s important that we try to teach others.  Too many are dying (433 Americans per day) because of that stigma.  Another reason that day was special?  My sister’s birthday of course!  I felt honored she chose to spend it in this way.  And honored that so many others did so too.

After the race Team polepole had breakfast together.  The busy restaurant was perfect for our noisy group.  The birthday girl polished off a large platter of strawberry crepes.  We’re in the business of making memories these days, and I’ve great memories of that day from seeing Team polepole and cheering on the runners to the breakfast chatting.

A final note – At the SaveYour Breath 5K I met Dave Eid, sportscaster at WGME in Maine. Dave’s wife Lisa is a fellow ROS1der, and Dave is on the Free ME from Lung Cancer Board.   Just after my grandson finished the race (beating his mom!), Dave had arranged for us to be interviewed: News interview

 

 

Advocacy and some ways YOU can help!

There are some great minds and dedicated people advocating on behalf of lung cancer patients. We need them and I’m thankful for the work they do.  Many times they’ve been directly impacted by the disease, like these senators have:  Bipartisan legislation introduced to study lung cancer in women

You can help by calling, emailing, or writing  your Senators and Representatives.

Truth is, until recently there were very few lung cancer patients able to advocate for themselves as most were simply fighting for their life physically and in the moment, with no ability to fight in other ways. (433 Americans die daily from LUNG cancer.) With such dismal survival rates, few saw a future past that initial shock stage, and had no opportunity to reach a point where they even could consider advocacy.  But thankfully there are those survivors such as Bonnie Addario and Debbie Violette who not only survived and thrived, but took on the challenge of advocacy. I’m grateful to Bonnie (Bonnie Addario Lung Cancer Foundation), Debbie Violette (Free ME from lung cancer ), other survivor advocates, family member advocates, and others who take up this challenge on our behalf. ROS1cancer research is being conducted through the Bonnie Addario Lung Cancer Foundation

You can help by learning about lung cancer and sharing your knowledge with others.  Knowledge is power. Education is key.

And then, the elephant in the room.  Why, if so many more die of lung cancer than other cancers, is the funding so low?  It’s a sad, but easy answer.   There is the huge stigma associated with lung cancer – the thought that it is a smoker’s disease and we can simply eliminate it by not smoking.  Heart disease is also often caused by smoking – do we blame those with COPD for their condition and deny them research funding dollars?  Do we not help others with disease caused by addiction? And, come on folks, we all know that ALL YOU NEED TO GET LUNG cANCER would be… drum roll please… LUNGS, JUST LUNGS. We all have them, and even if you think you take care of them, you can get lung cancer.  I know.  And, we’re learning that more and more nonsmoking women are learning this the hard way – with a Stage IV lung cancer diagnosis.  So many are not lucky like me, and there is no targeted therapy drug for them that keeps the beast at bay while the next drug is being developed.  No cure  in sight, but great hope for lung cancer being a managed chronic disease in the not so distant future.

You can help by ending the stigma.  If you learn someone has lung cancer, DO NOT ask if he/she smoked please.  They have LUNG cancer.  Why should it matter to you if they smoked?  They have LUNG cancer.  Would you ask someone with breast cancer what they did to cause it?  Of course not.  A little compassion goes a long ways, please.  And chances are, sadly, if they are a nonsmoker they’ll be quick to tell you so, either because they’re still surprised or because of the stigma.  I know I did.  It’s really so weird when here you are dying and you think you have to defend yourself in some way.  Now, after two years, I can either say nothing, note that all you need (LUNGS), or share that radon is the second leading cause of lung cancer.

Advocacy: public support for a particular cause.  So please – no more stigma.  When you share that someone you know has LUNG cancer, please don’t feel embarrassed for them.  Speak up for them.  Explain that 433 Americans die every day of lung cancer.  Explain that funding is needed.  Wear LUNG cancer awareness apparel and jewelry just as you would to show support for those with any other cancer.

If you’re in the Washington D.C. area on April 26 there is a rally to promote awareness.  The hope is to have 433 people in attendance.  Life and Breath Rally info

My lung cancer advocacy work: serving on a stakeholders advisory board to Maine Lung Cancer Coalition (MLCC) as they work on education, prevention, and screening; writing to my representatives; and I’m soon to have a final interview to be a Phone Buddy for Lung Cancer Alliance (LCA Phone Buddy Program).

Finding joy in the everyday EVERY day with Dan, the family, the three little dachshunds, and of course Dottie and Matilda, our Nigerian Dwarf goats.  That’s me!

 

Sharing the Journey

I can’t imagine traveling this cancer road alone.  No one should ever, ever have to.  I’m so very grateful that I’ll never have to.  In fact, my family has grown through this journey.  This struck me again today when the caregiver wife of a ROS1der posted a heartfelt and loving message to us all. While I’ve never met any of the ROS1ders, I feel incredibly close to them in the 22 months since I found the facebook group established for cancer patients who are ROS1+.  This family has nearly tripled since I found it, and is worldwide.

The ROS1der FaceBook group is a closed group (public site: ros1cancer.com), and I cannot share the details of that lovely post or anyone’s specific information, but  I can share what makes them my “family”.   Most, but not all, have lung cancer. Most, not all, have metastasized cancer.  Most, not all, have been on the drug  Xalkori crizotinib, my treatment hero, the reason I survived long enough to even call this a journey.  Many, maybe most, are younger than me, many with children at home.  Many have had treatments that I’ve not had.  Many are in clinical trials, some on the same drug as me (lorlatinb – hero drug #2), some on other targeted therapy drugs that are giving hope to ROS1ders.  All are either ROS1+ or the caregiver of someone who has ROS1+ cancer as required to be a group member.   Because of all we do have in common, there is always someone who understands, or can relate to, what another is experiencing.  Beyond that even, there’s just such a feeling of empathy and sincere caring about one another’s well being in the group.  In this group we share information, learn how different oncologists approach different topics, hear about procedures and tests as described by the patient, get the latest news on clinical trials and research, share tips about dealing with side effects and symptoms, options for and how to access healthcare/treatment, and so much more.

I’ve tried to think what it is that makes this family so very special compared to other organizations I’ve been part of and even considered family. I believe it is the never-ending optimism, the incredibly high level of HOPE, STRENGTH, COURAGE, and FAITH.  The people in this group have so many (not every!) reasons to feel and speak only doom and gloom, but not in this family.  Our fears, worries, and sadness can be freely expressed and we know they will be responded to with caring and genuine concern.  It is a safe place.  This is a difficult road to travel.  Love, compassion and support, research and answers, virtual shoulders to cry on and hands to hold are all offered.   Always, always with an eye on a future where, if not a cure, then treatment for managing cancer as a chronic disease, always HOPE.

My ROS1der family, a FaceBook group. Who knew I’d find such camaraderie in such a place.  Huh.  Another of the countless blessings that have come my way on this journey.  May every human needing such a place, find theirs.

Finding joy in the everyday, every day.IMG_3189.jpg