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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Big Night, Big Week

Big Night is an amphibian phenomenon.  It’s fascinating, and I’m very glad I learned about it, and about how humans feel a responsibility to help.  On the first rainy night in April salamanders and some frogs migrate from their winter home to their breeding pools.  Often this means crossing a road, so that’s where people come in.  They help move the salamanders and frogs across the road.  Yes, on a rainy April night, way past dark, people go out to help on Big Night.

So I got to thinking about it.  I understand that they need to stay wet, so rain is needed.  I understand that they avoid sun for the long journey, so travel at night.  But why do they cross the road?  Why not find a vernal pool on their side of the road?  I mean really.  I saw the poor little guys crawling over that winter “salt sand” to even reach the road.  Why?  Simple.  They are returning to their ancestral breeding pool, not just any vernal pool.  And so that adds to why it is so wonderful that people help them.  It is our responsibility since we put the road in their way. Here’s one naturalist’s explanation (and an interesting  blog to follow).  Mary Holland’s “Big Night” explanation

I first went out on Big Night last year.  We (my sister, niece, and a friend, new to big night!) went out on a night that wasn’t so big this year.  I couldn’t go out a couple nights later on what turned out to be Big Night because I’d had a Big Week.  Either my targeted therapy drug or cancer cause me to have less energy and stamina.  But that’s okay.  It’s because of crizotinib and now lorlatinib (and so much that’s not medical) that I can think about going next year.  And, the other really wonderful thing about me learning about Big Night is that I shared it with others who love it now too.  On Big Night my phone chimed on the bedside and sure enough, there was a pic of my granddaughter holding a salamander.  The whole family was out in the rain with friends, way past bedtime, to save lives.  What a great learning adventure for the children (and their parents)!

Big Night came in a big week for me.  The night before the “night I went out searching” was certainly a big night for me.  I went to see the Wizard of Oz!  Yup.  Somewhere Over the Rainbow for me.  And not just me!  I got to enjoy the show with four of my grandchildren (the campers) and my son, daughter-in-law, and daughter.  We all rode together and went to dinner before.  Everything, even (or maybe especially) the car ride was so great.  What a treat the evening was!   There’s so much I could say about how much that evening meant to me in any life.  Yet, I can’t even think how to describe exactly what it means to me in this second life I’m in.  Just so precious and special.

To top off my big week, my sister, a friend, and I went to Bar Harbor  yesterday and walked the trail in the village that goes along the ocean , stopping of course for lunch, but too filled for Pugnuts ice cream on the way home.  I tried out my new sneakers from Ortho Feet.  Pretty good!  Roomy, well cushioned, comfortable.  Not too stylish, but luckily that’s not what I was looking for.  I was looking for something that would help with the neuropathy discomfort when walking.

Dan and our son have been working on traps in the field by the house, readying them for lobstering “season”.  How nice it is to be here to prepare lunch for them.  I’m grateful that I don’t have to struggle to try to keep working like I was last year at this time.  I’ve loved my winter at home as much as I loved my fall at our camp.  Today I made a sauce with tomatoes I froze (whole by the way) from our summer garden.  Soon we’ll be planting again.

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Enjoying the everyday every day. Me. Now.

It’s the little things

Every day I’m reminded of how fortunate I am to be here.  Reminded in good ways that is.  Today Dan, the three little dachshunds, and I piled into the truck and went to the store to get important storm provisions, eggs and bananas.  Dachshunds love bananas.  When  I came out of the store and climbed back in with the dachshunds and Dan, tossing my three, yes three, bags of groceries on the floor, I suddenly was overwhelmed with wonder and gratitude.  I had just gone into the store, and carried out the groceries while Dan waited in the truck.

Two short, and very long, years ago I was so sick, barely able to go up and down the stairs, spending all my time in bed, not thinking or caring about groceries.  Dan had quietly assumed all the household tasks that I had done or we had done together.  All of them, every one.   I was unable to even notice that he’d done that.  Most of my energy went to breathing. No joke. Just breathing.

So it’s the little things, the things we take for granted, that I’m filled to the brim with gratitude about tonight.  Dan knew just what I meant when I climbed in the truck and was so very, very happy.  He says it happens to him all the time too.  Our life together has always been special, now we understand how much so.

Finding joy in the everyday every day is oh so easy for me now.  Those little things, they’re always there.

Still busy, no pickles!

The hum of the dehydrator reminded me of finding joy in the everyday EVERY day. That reminded me it’s time to share what’s new in my world.

Lying very still, palms out,  light dimmed,  music playing, I glance down to peek at the eighteen needles just before my body relaxes and I feel the energy flowing to my fingertips and toes.  Yup, acupuncture.  Before I know it the half hour is up, Dr. Z is back in the room pulling out the teeny needles, and I have to make my reentry to this world.  My body responds well to acupuncture.  Many years ago it “cured” my chronic migraines.  Eight treatments over four weeks.  Headaches gone, just like that, after years of torment.

When I read that neuropathy is treated with acupuncture, I called Dr. Z. to schedule a visit.  A side effect of my targeted therapy, neuropathy is the mini beast I’m dealing with now.  Fingers, hands, toes, and left foot. None of the descriptions I read prepared me for how it would affect me. Wow.  Much tougher than daily diarrhea was while on crizotinib.  We already reduced my med dosage, so that’s not an option.  Out of my research came  two possible remedies for relief: acupuncture and topical cannabis essential oil.  The oil provides temporary relief. After two sessions of eight scheduled, I can see marked improvement from the acupuncture.  It’s going to work.

No, acupuncture  doesn’t hurt.  Don’t like needles?  Don’t look!  These are just tiny, thin as a piece of hair, and they get poked into your skin.  Okay,  how about gently inserted?  I had to count as he gently inserted them to even know how many there were.  Two on the inside of each elbow, one near each thumb, three on the inside of each knee, two on each ankle, and one in each foot.  I think.  I know I counted 18.  Well really I counted nine, on each side.  Maybe I’ll ask for a phone pic.  That’s taking up two mornings per week for a month.  Then the weather will be warmer and my foot will feel well enough for walking, maybe hiking.

Got the dehydrator for Christmas, a little bigger than the one we lost to the fire, still sits nicely on the counter. So nowadays instead of pickle-making, it’s jerky, venison jerky, and applesauce leather, and best of all? Dried apple peel for naughty Dottie and sweet Matilda.  Who knew goats prefer their apple dried?  Won’t touch a fresh apple, but they go crazy for their apple snacks.  Now Dan has to eat applesauce, apple leather, apple crisp…  You get the picture.  And, Matilda now stomps her foot on her bowl when there’s no apple.  Can’t say “poor Dan” though, he gave me the dehydrator.  Just lucky for him that the grandchildren like jerky.

A few years ago I took a dehydrator to my preschool classroom to dry starfruit.  Shortly after we filled it, one of the students lined all the chairs up facing the dehydrator.  Her plan was to watch it.  Huh.  I must have missed a step in my explanation.  I learned from that day that I would need something to do while the dehydrator was humming along.  I have found a great new hobby.  Combines many things I love and I can do it whenever I want while sitting with my feet up and my dachshunds by my side.  Online classes that are either free or cheap!  There’s all kinds of photography ones, and I’ve always wanted to learn more about my camera and lenses.  Other topics of interest such as drawing and writing are available too.  Why, I might even brush-up (relearn) on French or learn a new language.  All while the dehydrator is humming.

Winter has been wonderful for me.  Dan’s been home most days, working on lobster gear in his basement shop. Our first winter of being home together most of the time.  Really nice.  Soon he’ll be back on the water more, and before we know it, it will be time to move to our Salt Pond camp.

Headed to Dana Farber for my brain MRI, CT scans of chest and abdomen, blood draw, EKG, and doctor appointment on March 1.  It’s been nine weeks, the longest between scans since diagnosis.  If all goes well, appointments will stay at nine weeks.  Thinking positively. I’m grateful for research, genomic testing, and targeted therapy drugs in clinical trials.

That’s me.  Finding joy in the everyday every day here in our winter home on the mountainside with Dan, the three little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.

 

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

 

 

We’re off to see the Wizard!

For Christmas I received a family outing to see The Wizard of Oz performance in April.  All of the Camp Gramma “campers and counselors” are going!  The “givers” know I love The Wizard of Oz.  Without intending it to be so (I think), it was also a gift of hope and of a feeling, a statement, that we’re not letting this cancer interfere with our family life.

I love The Wizard of Oz – did you know that? A few weeks ago I saw that the performance was going to be about an hour away in April. I thought about getting tickets and inviting someone to go with me, but…  But I didn’t because there were too many “but”s in my way. But it’s late, but it’s expensive, but…  Honestly, I let cancer get in my way.  But someone will have to drive me.  But what if I don’t feel well?  It’s too far away (in time, not distance), I can’t spend $ on something 5 or 6 months away.  Who knows what life will be like then?  But in reality, no one knows, for anyone.

So I’m excited!  Excited to see the performance, and with all my campers!  There’ll be seven of us.  We’ll go together, and maybe we’ll go to dinner first.  It’s a school night and I know the campers will be tired, but they’re young!  And me?  I can rest the next day.

It’s a strange thing, this life with metastatic lung cancer.  Since it’s not going away, and some wonderfully talented people have figured out how to contain or control it for now, we are filled with hope and making plans – not just setting goals – making plans for events that are months away.

I remember the first time I saw The Wizard of Oz on a color television at my aunt’s home as a child.  Wow!  And, I saw Wicked on Broadway when I went with my daughter and her daughter to NYC for my oldest granddaughter’s 16th birthday.  That was spectacular, and a special outing for all of us.  This time will be special and spectacular before we even see the performance, because we are doing it.  Making memories.

Here I am – living life, feeling grateful, trying to express that gratitude, and finding joy in the everyday every day!

 

Privileged

Privilege, privileged – the word has come to my mind a lot lately as I think about my treatment and healthcare compared to others’. The “others” I speak of in this case all have access to healthcare, so I guess they too are ”privileged“: a special benefit that is available only to a particular person or group.  (macmillandictionary.com)  Many people in our world do not belong to the Access to Healthcare Club at all.

My mind begins to confuse the definitions and ways the word privilege is used as I consider my lung cancer treatment. The definition above doesn’t tell anything about the person or group, but in this case privilege feels good and not so good.

I definitely feel it is a privilege (something nice that you feel lucky to have) to have qualified for a clinical trial at Dana-Farber Cancer Institute.  It feels really nice and lucky to be there.  We work(ed) hard to get there (years of employment earning health insurance, paying fully for that health insurance now that I can no longer work, driving to Dana-Farber (250 miles one way), and on and on…  But it is a privilege that even someone WITH health insurance living in some regions of THIS country cannot access.  Clinical trials for my targeted therapy drug Lorlatinib are only available in a few places in the country. This drug targets only two very specific gene mutations/drivers(more on how cancer cell mutations happen), ALK(in 3-7% of NonSmall Cell Lung cancer) and ROS1(1-2%). We are lucky drugs are being developed for such a small number.

Today Lorlatinib may be available for Compassionate Use (Expanded Access), but it was very difficult to acquire in this manner until recently (now that it is near FDA approval.) I know this because not long ago one of the “others” with ROS1 developed resistance to crizotinib, the only FDA approved targeted therapy drug for ROS1. (Have I ever said that because of this mutation, standard treatments don’t work?) So, after crizotinib stops working, a ROS1 lung cancer patient has little hope unless she can get into a clinical trial. This patient lives in a region where there was not access to a trial.  Drive to one, fly to one you say! Not if the person is not well enough to do so or hasn’t the financial resources to do so. Maybe she doesn’t quite meet the criteria.  How about compassionate use you ask?  Not available in this case. What?!!?  Time’s running out.  In this instance, the last I knew lung cancer patient advocates began reaching out to the drug company and the ROS1 experts in an effort to acquire treatment for this patient.  I was not able to learn if help came in time.

Privilege: a special benefit that is available only to a particular person or group

I belong to a FaceBook group for ROS1 patients from all over the world.  Nearly all are lung cancer patients. We are able to share information and learn from one another.  I’ve found it immensely helpful in my search for understanding of this disease.  This group is available only to ROS1+patients and their caregivers. A privilege that is available to anyone who would need/want it, if they have internet access, and can read and understand the information.

Even those with the education, reasonable financial resources, and health care access cannot assume the privilege of receiving my level of treatment.  Lorlatinib isn’t available in all parts of the world.  And, the newest of these drugs ( Tyrosine kinase inhibitors)that treat ROS1, entrecinib, isn’t available even through clinical trial right next door in Canada, according to an “other”. (That will still make only 3 drugs, 1FDA approved, to treat ROS1, and those pesky cancer cells really know how to build resistance to the drugs.)

I know what it was like before my first targeted therapy drug.  I was dying.  I did not build resistance to it (but had brain progression).  I am privileged to be treated in a facility where I have scans regularly, where I know when I have a symptom (such as with the brain progression) it will be looked into quickly, where treatments are known and available, where a plan is ready if cancer overpowers the drug.   I know of an “other” , living in another country, who died while waiting for treatment to arrive.  I am so sorry this happened.

Without the many privileges I enjoy I wouldn’t be here, drinking tea by the Christmas tree, wood fire warming the room, still trying to sort the good and bad of the definitions of a word as it applies to my experience with healthcare.  I know the circumstances of my life (from childhood and education to the love and support of Dan and our family)  have equipped me to access the best level of treatment.  But does that mean I should be privileged, should belong to the club when “others” with the same needs are allowed to die because they can’t access the correct treatment?  A treatment that IS available, but not accessible for that person.   I can’t change the world, but gosh, at least in our country, it seems like access to known lifesaving healthcare should not be a privilege.

And, by the way, have you heard me say lately that LUNG cancer research is way underfunded?  It is the deadliest (433 Americans per day) and least funded when compared to the other common cancers.  I’m making my voice heard to my representatives, and urge others to do the same.  Oh yes, and radon is the second leading cause of lung cancer – just thought I’d get that in there.

I’m privileged to be able to serve on the Family and Patient Advisory Council of the Maine Lung Cancer Coalition MLCC.  More on this work later.

Finding joy in the everyday im my cozy home, making memories, and loving life with Dan, family, 3 little dachshunds, and 2 Nigerian dwarf goats – that’s me, living a life of