Health Update

Another good news health update!  No new mets anywhere, no progression anywhere, AND a little improvement in the meninges!  No sparing the exclamation marks in this post.

We love Dana-Farber Cancer Institute!  For anyone wondering where to get exceptional cancer care in New England (and maybe the best in the world!), I so recommend Dana-Farber.  For us it is a five hour drive, but what is that really in the big scheme of life if it can save your life, prolong your life, improve your quality of life – you get the idea. And, it is the only healthcare facility I’ve been to where you can have blood tests, CT scans, brain MRI, and an EKG in a span of two hours, and two hours after that your oncologist has the results to share with you.  That oncologist only treats patients with your type of cancer, and likely is a researcher and/or teaches at Harvard Medical.

Lorlatinib, my current heroine fighting the battle for me while I keep my mind and body healthy, is doing her job well.  Last July I began on 100mg daily, but fairly early on got such bad neuropathy that the dosage was reduced to 75mg. That reduction, acupuncture, and learning how to deal with neuropathy all helped to make it much better than just manageable.  I have wondered if I should try to go back on 100mg for the best chance of the most lorlatinib reaching the brain.  (It is thought that it cannot reach the brain as well as other parts of the body.  At least that’s my understanding from reading research study materials on the phase 1 trial.)  I asked today about increasing and got a “As long as it is working, we don’t want do something that may increase the neuropathy.”  I didn’t get a “no, never”, so if I do have brain progression in the future, that may be an option.

Being in a clinical trial is an honor.  At today’s appointment lots of questions were asked about side effects and other things,  I always have to complete a questionnaire, and I’m required to keep a medication log.  When they take blood for tests, extra vials are filled for the research.  I get to be part of something that may help change how lung cancer is treated.  The hope that it will someday soon be a manageable chronic disease is real.

The known Lorlatinib side effects of high cholesterol and triglycerides, the neuropathy, and fatigue (cancer and the drug both are likely culprits) are really not impacting my quality of life. We’ve made adjustments for sure, but my days are great.  For someone with stage IV lung cancer with metastases in her liver and leptomeninges, I’d say I’m doing fantastic. I’ve got a lot to live for and look forward to, and every day is one to be enjoyed and be grateful for.

One last word about Dana-Farber – HOPE.  Kind and patient people who instill confidence and offer hope, always.  Hope.

Finding joy in the everyday every day, and ever so grateful to be here to do so.

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Normal must be overrated

Who really wants things to be normal anyway?  I never did, but then I didn’t really need normalcy before.  This normal isn’t new or normal in the typical sense, but it is my normal as I live with metastatic cancer.  And live well I must say.  To do so I’ve needed to develop many strategies and work arounds.  And I’ve had a lot of help.  But it’s all definitely worth it.  Quality of life really matters.  Maybe some of my strategies will work for others.

Learning and remembering your energy limits is important.  Kind of tricky too as it’s a moving target.  There are days I have great energy and some that I have a deep, deep odd tiredness.  Most days though I wake up, get myself going and go strong until noon.  After that?  Anybody’s guess.  I learned this week that I’m no longer able to push through it like I always did in my old life.  When I’m done, I’m done.  Kind of like a baby. And that is okay!  I prioritize and sometimes have bonus time for something more.

“Love what you do. Do what you love.”  I’ve always believed this makes great sense.  Well there’s lots of things I love, but can’t do anymore, or not yet in this “normal”.  That’s okay too because I’ve discovered I love lots of things.  So I’m focusing more time on the ones I can still do (like photography, being in nature) and maybe just adjusting how I do them.  And I’m learning and doing new things too!  Things like writing a blog! I sure have more time to read now, and I love to read pretty much anything.  I have four books going right now; one fiction, two health related, and one nonfiction nature-based.  None on education -that’s a first!

Shortness of breath, my huffing and puffing.  Haven’t really found good strategies except to go slow and steady.   Not likely to do much running this spring, but I am determined to do more walking in my new OrthoFeet sneakers.

And then there’s the digestive system issues.  When I first started crizotinib I took a few different meds before my system could tolerate it being there. Imodium went with me everywhere because I never knew when I’d have a bout of diarrhea. And no advance notice usually, so pads or disposable underwear, extra clothing, disposable wipes.  Carried my backpack everywhere.  That doesn’t seem normal, but it became routine. In addition to the clothes I try to remember to carry food that I know I can eat in case I can’t eat what is available.  With Queen Lorlatinib, my current targeted therapy drug, the digestive system issues are much less for me at this time. (Fingers crossed!)

Lorlatinib brought some new challenges that I’ve referred to earlier.  One, neuropathy, is common for people on chemotherapy drugs and for people with diabetes.  As much as I love to go barefoot, I cannot now, even in the house.  Anyone who has an inkling that they have neuropathy in their feet should start wearing shoes or slippers ALL the time.  I learned the hard way.  If you have hand neuropathy, try acupuncture – helped me tremendously.  I tried some of the ointments and cannabinoid oil, but I haven’t found something yet that I can say gives me relief from neuropathy.  Wearing gloves for any work and even driving, and keeping my feet well padded have worked best.  And, I just don’t stand still for long periods of time or do lots of peeling veggies as those as things that are sure to bother.  I’m so fortunate that I don’t have to try to work.  Luckily I’m a good sleeper, so it doesn’t bother too much at night.  Oh yes, and ignore the feeling that a tick is crawling on your ankles.  Or maybe not.  Probably just neuropathy, but best to check.  I spend a lot of time looking at my ankles!

Weight has been an interesting problem over the past 2 years, four months.  After the fire in the fall of 2015 I decided to only buy what I absolutely needed for clothing.  Then as I became sick I began to lose weight.  By the time I started on crizotinib (March 2016) I’d lost more than 30 lbs. and I’m only 5’0″ and wasn’t ever terribly overweight.  Between cancer taking its toll and radiation doing a number on my esophagus, I had a few months of not eating much, eating mostly liquid form foods, etc.  And, as far as clothes went, thanks to radiation I couldn’t stand anything near my neck or wear a bra. So my daughter bought me some size small stretchy pants and v-necked loose tops.  That’s been my preferred wardrobe ever since.  I eventually gained all that weight back when on crizotinib.

Weight gain is common with these drugs, but I had no idea what I was in store for with Lorlatinib when I began it July 2017.  Everyone I know on this targeted therapy drug (still in clinical trial) has had this problem to some degree.   I started out gaining a pound a week.  Yes, one pound per week! Eeek!  And it was not simply that I was feeling better and eating more, or that I wasn’t able to exercise enough. But,  thanks to the stretchy clothes I just moved to medium, keeping in mind my “fire resolution” and bought only what I needed.  I was beginning to feel uncomfortable with the extra weight.  By January I had gained 20+ since beginning Lorlatinib. July to January, as much as my pregnancy weight gain.  From March 2016 to January 2017 that’s a 50 lb weight gain.  (Both pregnancies combined!)  Without even trying to lose the 30 or gain back the 30 plus 20.  Finally, in January the trial nurse mentioned someone having success with a paleo diet, so I tried that.  (I wrote about it earlier.) Paleo works for this!  I immediately lost 8 pounds and haven’t gained more.  As long as I feel “well” I can do this.  As I’ve learned, weight loss from cancer and treatment AND weight gain as a side effect are common.  I work with and around this by eating well and wearing my comfy clothes.

Finally,while trying to understand this “normal”, I think maybe the greatest lesson and the greatest blessing that I’ve gained from this journey is that it is more than just okay to let or even ask others to do things for you. I couldn’t do anything for someone else and very little for myself when I was so very ill.  That’s when I began to truly understand what gratitude and expressing your gratefulness does, not just for you, but for those you’re grateful to.  People who care want to do things to make your life easier and brighter when you are struggling with something in life. I still want to do everything for myself, but I don’t feel badly asking for help or letting someone else do what I don’t have energy or strength to do.  I feel loved and grateful. And I like to look for things I can do that will brighten their days.

Late this week I go to Dana-Farber for scans, blood work, brain MRI, EKG, and oncology appointment.  Dan will drive and wait patiently for me every step in the day.  I will post an update, hopefully by the weekend.  The prayers,positive energy and thoughts of all who follow this cancer journey give me strength.

Baseball and softball have started for the children. Fun times for grandparents.   Finding joy in the everyday every day here with Dan, the family, the 3 little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.


The fire, our fire (2015)


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.


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.


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.


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.


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.




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.


Enjoying the everyday every day. Me. Now.

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.


Pollyanna must have believed in Silver Linings

Today I am ever so grateful for the precious gift of time.  Today I’m reminded that time is a bright light in this cancer cloud I live in.  I just read a FB post by Dan’s cousin whose husband suddenly passed away four months ago. Her post, written to her husband, included Diamond Rio’s One More Day.  I thank her for sharing both her grief and her healing.   She often includes a song she’s connected to in this aspect of life’s journey that she was thrust into.  I listen to the lyrics and feel the joy of their love.  I know she will  feel that love every day of her life here on earth and beyond. I know she feels too the love, prayers, and support of those who read her post and are thinking of her, not just today, but every day.

And so I think how lucky I am to be living, living in a time and place that genomic testing is done on lung cancer tumors.  That researchers have developed more than one drug to attack this ROS1 cancer I have, even though only 1to 2% of lung cancer patients have this cell mutation.  Time for the second drug (lorlatinib) to be available when the first (crizotinib) could not protect my brain.  Every minute of time is one minute closer to the next targeted therapy drug being available if I should need it.  The gift of time to make more precious memories.  Time to understand why I shouldn’t shy away from that camera. Given time to say, “You know, I’ll always be with you”.

Does EVERY cloud have a silver lining? Well, I say yes, if you’re open to it, and maybe even determined to search for it.  But sometimes it seems you have to work so hard getting through the darkness of the cloud that you do get lost in your search. Everyone does, I think, at times.  Even those strong of faith.  Those with great support systems around them.  That’s where my thought about Pollyanna comes in.  Her brain, heart, soul must have all been “wired” for optimism.  We need to be optimists in life so to be prepared. I think we can train our minds to be optimists.  You shouldn’t ever miss a silver lining.  They’re the joy I find every day in the everyday.  In the “little things” are the most beautiful of silver linings: love, peace, a new day, strength, life.  Not little at all.

In case you’re wondering-

In thinking about this concept of silver linings I learned that  ‘silver lining’  was coined by John Milton in Comus: A Mask Presented at Ludlow Castle, 1634

“I see ye visibly, and now believe
That he, the Supreme Good, to whom all things ill
Are but as slavish officers of vengeance,
Would send a glistering guardian, if need were
To keep my life and honour unassailed.
Was I deceived, or did a sable cloud
Turn forth her silver lining on the night?
I did not err; there does a sable cloud
Turn forth her silver lining on the night,
And casts a gleam over this tufted grove. ”

And Pollyanna, the ever optimistic child in Eleanor Porter’s 1913 novel.  Also in the 1960 Disney movie.  I think it’s a compliment to be called a Pollyanna .

The tiniest thread of silver lining grows into something quite magnificent before you know.  This happens to me.  I’m learning more each day, especially since I’ve been given this gift of time. Finding joy in the everyday every day.



Season of Hope

If I had a favorite season, it would be spring.  There are things I truly love about each season.   Spring just has so much to love.  Even with the ground and everything else covered with FEET of snow, I felt spring yesterday. The vernal equinox was 12:15 PM.  I was at a meeting of a Maine Lung Cancer Coalition advisory group when spring began, but two hours later as we stepped outside into the sunshine, even surrounded by parking lot snowbanks, I felt spring and breathed a big sigh of relief. Phew, I made it, made it to spring.  I bet lots of animals have that thought, perhaps not at the moment , but later, when the snows melt and the trees leave.

Sigh of relief?  Made it? You see, many years ago my grandmother pointed out that more people die in winter and she said if she made it to spring, she’d go a while longer.  She nearly made it to 100.  This was my third big sigh of spring relief.  The first in 2016 I was just 18 days into my first targeted therapy treatment and knew from how I felt that it was working.  Huge sigh of relief.  I would conquer the beast inside my body certainly long enough to enjoy another spring. Today I’m feeling pretty darn good, in great shape for the shape I’m in. The beast is once again contained by the targeted therapy drug Lorlatinb.

I love all the things in nature in spring like most people do who are lucky enough to notice, from the smell of the mud to hearing new songs each morning and evening.  There’s so much to see and look forward to.  Everything seems new or renewed, just born or re-born. My babies are spring babies.  For all beings, I think it must be the season of hope, spiritually and physically.

Today memories of “springs past”, sprang into my head.  Ha! True though.  Memories like the leaves in front of me as I crossed the Waldo-Hancock bridge for years daily, first simply appearing and then over weeks changing their shades of green . There’s really nothing else like spring green. Dan’s grandmother’s joy in attending Easter sunrise service and breakfast with her great-grandchildren, so sweet. Then there’s the Easter 55 years ago (give or take a year or two) when we camped out in the woods behind our house. Easter Bunny didn’t know what to think.  I think it really happened, my younger brother wouldn’t remember because I was the baby then. I do remember that. Or the April 42 springs ago, that my “ready to be born” daughter nearly jumped out of my body when the engine of the Patty P II, her grampa’s boat, was started for the first time ever.  A few days after that we went on a rough road to go “alewiving” (alewife the fish) to see if we might jiggle her out.  Spring memories.

In recent years a great memory maker is our now annual family weekend at  Spencer Pond Camps , off the grid  wilderness lakeside cabins in the Moosehead region of Maine.  Dan, me, our children and their spouses, and our five grandchildren fishing, hiking, bike riding, kayaking, moose spotting, toasting marshmallows and playing games in the evening, and even relaxing in the porch swing.  So many memories.  Moving to our Salt Pond camp, now even more exciting with Dottie and Matilda, the Nigerian Dwarf goats, riding along.  The year we lived at camp I saw the return of ducks and other migrating birds.  Closing my eyes, I see spring sunrises from the Salt Pond to Grand Canyon. Spectacular, all. Planting the garden, and patiently (or maybe not) waiting for something, anything to come up.  Dan working on his lobster boat and traps, readying them for another year.  Every spring for about 46 years.  Picnics at the boatyard during April vacation.  Memories.  And new spring traditions. Last year was my first spring Big Night, the first rainy evening in April when  the salamanders cross the roads and people go out and help assure their safe crossing.  Quite the phenomenon!  A fun time and I hope we helped the little guys out.  Started a phenology journal so I can follow the changes from year to year.  So many memories.

Watching the goldfinches acquire their gold today (you can almost see it happening), I think of watching Mr. and Mrs. Merganser the spring we lived at camp.  How beautiful and  how different he looked from Mama Merganser and her babies in summer. Spring memories.  Looking forward to seeing the snowshoe hares in the field soon.  And baseball and softball.  Lots of memories to make.  Looks like a busy spring for this Gramma.

Time to re-hibernate and rest up – there’s more snow on the way.   Reminds me of the April snowstorm in 1975 when I was stranded on a hill in Orland.  Out of the blinding snow appeared the dad of my best childhood friend.  Hadn’t seen him for a decade, and there he was to rescue me.

Here in our winter home on the mountainside, finding joy in the everyday every day with Dan, the family, our three little dachshunds, and Dottie and Matilda, our Nigerian dwarf goats.  Dreaming of springs to come.