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.

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March 1, 2018 Health Update

The good news is IT’S ALL GREAT NEWS!  No, I’m not cured.  No, I’m not NED (no evidence of disease).  Don’t waste your time worrying about those things.  According to “my” oncologist at Dana-Farber, my brain MRI, CT scans of my chest and abdomen, EKG, and blood-work all look GREAT.  I won’t see the reports myself until next week for details, but GREAT will do.

Our morning started with a blood draw and IV at 6:30 AM at Dana- Farber. (Sent a pic of IV to our granddaughter in nursing school  who just successfully inserted her first IV) Then, after a brisk walk across the bridge, I had the brain MRI and the CT scans at Brigham and Women’s.  After those, it was a race back to Dana to the 10th floor for an EKG, vitals check, and appointment with the doctor and the clinical trial nurse. We finished all this at 9:55 AM. Record time I’d say, thanks to a new patient coordinator who booked my appointments overlapping one another.  Oops!  Everyone made it work just fine.

After the appointments we waited 45 minutes for my wonder drug Lorlatinib.  It is she who is in there day after day tracking down that nasty ROS1.  Lorlatinib is relentless in her work.  I am grateful to those who developed Lorlatinib.  With each drug developed we get closer to the time when lung cancer is managed as a chronic disease, until there is a cure.  I’m grateful to all the brave patients in the first trials of this and other drugs being developed for ROS1.

I continue to work on my part of the deal with Lorlatinib, keeping myself healthy.  This work includes: acupuncture for neuropathy, paleo diet for the nonstop weight gain (now stopped),  immune system support (advised by acupuncturist, approved by oncologist – some supplements were nixed by oncologist due to unknowns of drug interaction), and energy healing meditation/practices. Soon will be increased time outside.  It’s a full time job, staying healthy, but it’s paying off.  I’m not just alive, just surviving, I’m thriving, and feel well – all things considered.

So, after a whirlwind trip to the city (traveled there yesterday), we arrived home at 4:30 PM.  Dan does a lot of driving and waiting.  It can’t be easy.  We’re a team, he says.  He’s a wonderful man.  And now here we are, back to finding joy in the everyday every day with the family, three little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.

 

 

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

 

 

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

 

 

Thursday, December 28, 2017 Update

Great news, again!  Right up there with some of the best news I’ve had since beginning this journey.  Writing this in our hotel room, a block from the most wonderful cancer institute in the world, Dana-Farber Cancer Institute.  Wonderful: inspiring delight, pleasure, or admiration; extremely good; marvelous.  Yes, wonderful! Regardless of the news I might receive from them, they certainly have inspired admiration from me, data shows their work is extremely good, and the people we’ve met there are delightful and quite marvelous in their treatment of patients and caregivers.

Back to my news!  Stable from the neck down, AND (drum roll please) an 84% reduction of the nasty beast in my brain meninges since beginning my second wonder drug Lorlatinib in July.

Today was another long day for us.  We stayed in Portland last night to make sure we would arrive at Dana-Farber for a 10:30 AM start.  At 10:30 PM the fire alarm went off in the hall of the motel last night.  Some kid had burned his popcorn in a microwave.  We didn’t have to go outside luckily. Today began with “free” breakfast at 6:00 AM, followed by a very quick 2.5 hour drive to Boston.  No morning traffic – unlike any other day we’ve gone.  Vacation I guess. We even parked on P4 instead of P6 of the underground parking garage!

My appointments were all the “usual”:  IV in, blood draw, CT scans of chest and abdomen on L1 in the Dana Building, brain MRI and IV out on Dana 3 , grab some lunch (Yawkey 3), check vitals, EKG, Dr. appointment (Yawkey 10), and wait for medication (Yawkey 2). Done at 4:00 PM. Nothing to it!

Here’s more great news – I am scheduled to return to Dana-Farber on March 1, 2018.  Nine weeks!!  Yes, nine.  That is the longest between appointments in the 23 months I’ve been a patient at Dana-Farber.  Wow! Now, will I be nervous about that? I don’t think so.  I know my body, and the difference between symptoms and side effects pretty well now.  And, my clinical trial nurse and oncologist are just a phone call or 5 hour drive away!

Hey, I forgot something very important in my post about Procedures and Tests !  When they put the contrast dye in your IV during scans, you get the warm feeling and would think that you wet yourself if not forewarned.  Thought about that one today when…

For me, 2017 has been the year I began to learn to LIVE with metastatic lung cancer, helping to create new statistics, and bring hope to those diagnosed with this disease that still currently kills 433 Americans every day. We can, are, and will continue to do so much better. There is great hope for the newly diagnosed.

Happy New Year to all our family and friends, new and  not so new!  Your positive thoughts, love, and prayers continue to help give me the strength needed for this journey.  Please test your home for radon this year if you’ve not yet done so.

Looking forward to us going home to the dachshunds and goats, comfy and cozy for the winter, feeling grateful, 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 

 

Lucky to be me!

Try to imagine that you’re hiking along life’s trail, happy go lucky as can be and then you find yourself slowing to a walk and then a crawl.  That’s kind of what happened to me in the fall of 2015.  Despite the house fire recovery, things were good, and then they weren’t.

I’m lucky! For lots of reasons. I’m really grateful to the FNP or PA who saw me on that Sunday at the walk-in clinic.  She did the x-ray that led to the discovery of my lung cancer tumor.  If not for her, I’m not sure help would have come soon enough, I was crawling that slowly.  But I am so fortunate that she knew to do that x-ray that day.

And then There I was at Dana-Farber Cancer Institute barely crawling (Dan thought it was time for a wheelchair) to my radiation sessions (that were for palliative care while they were developing my treatment plan) when I found out just how lucky I really am.  I am LUCKY! My cancer, at that time already spread to my liver and pelvis, was treatable with a targeted therapy drug.  Yes, that’s right. TREATABLE!  Not sure about others, but Dan and I knew that I wasn’t going to be crawling much longer if something didn’t change, so hearing that word treatable made us feel blessed indeed.

Great Educational Reading on lung cancer, genetic mutations, target therapy treatment, and more!

Back to lucky me!!  Thanks to the testing done by Dana-Farber and Brighams it was discovered as quickly as could be that the lung cancer in my body is driven by a cell mutation called ROS1.  While ROS1 is what caused the rapid spread, it is one of a few mutations that can be battled with a targeted therapy drug that truly targets those ROS1 cancer cells and not all cells like chemotherapy does. It was available at that time for expanded access, not quite FDA approved.   And, it is a pill that you take.  I am lucky.  I was dying and in just a few days the crizotinib began to work.  I started the drug on March 2 ,2016 and check out how different my lung looked by May.  (Feb.,even after radiation on right, May on left)

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Told you I’m lucky!  I’ve had two years since cancer crept into my body and ROS1 slammed me. Great years filled with blessings beyond thinking. If not hiking, definitely walking at a good pace and feeling pretty darn good.

Still lucky! After 16 months on crizotinib, the cancer progressed to my brain meninges. Crizotinib does not protect the brain, so when one of those little cells sneak by…  Researchers had developed a newer drug that battles ROS1 that does fight in the brain, and I was eligible for a Phase II clinical trial at Dana-Farber.  Lucky!!! This drug too will soon be FDA approved.  It is a pill taken once per day.  Since July Lorlatinib has kept everything from the neck down looking the same in scans, and it has reduced the cancer in the meninges by 75%.  Lucky, blessed, fortunate – give me a thesaurus – I’m that.

Research doctors are working on the next line of treatment to work against ROS1 when it figures out the code for this treatment and builds resistance.  I, and so many others with acquired cell mutations such as ROS1, are SO grateful.

Saying I’m lucky implies that it’s all by chance.  I know that’s not so.  Something more than chance is at work here.  I’m grateful every moment of every day.

Update, November 16, 2017

Now that I can no longer post to carepages, I will do my updates here.  We’ll miss carepages, first introduced to us when our grandson was born at Brighams and whisked (with mom) away to Children’s where he had his first of a few heart surgeries.  He’s a very healthy, athletic eleven year old!  But then, and now, we needed a way to update and communicate easily with friends and family.  So, thanks carepage!

GREAT NEWS! Lorlatinib is working for me.  75% reduction of the cancer in my meninges!  I am having no symptoms from the cancer in my brain.  I am having some minimal side effects from the lorlatinib doing its job in my brain.  Lorlatinib is also controlling the cancer in other places of my body as well as my hero Xalkori Crizotinib did. High cholesterol is a side effect of the drug, so my Crestor has once again been increased, but I’ve been assured that this can be managed and wouldn’t be a reason to stop the lorlatinib. Whew!  So, at the lower dose from when I began, it is still effective for me!

Dan and I drove to Boston Wednesday for the Thursday appointment.  Our first test was at 6:30 AM.  We were finished for the day at 2:45 PM and then Dan had to drive home in the pouring rain.  Traffic was heavy heading out of the city, and then visibility was terrible on the highway. It got dark while still on the interstate.   We stopped for a quick dinner and break in S. Portland, Between Augusta and Belfast it was mixed precipitation. But finally at 9:20 PM we pulled into the driveway, safe and sound.  Dan’s my hero, always.  The greeting by the three little dachshunds was as wonderful and crazy as always.

We are ever so grateful to/for everyone at Dana-Farber, everyone in lung cancer research, and our family for jumping in so we can travel.

Radiation (or Radiotherapy as it’s really called)

When I first got to Dana Farber the doctors recommended radiation for palliative care.  Palliative care is care intended to improve the quality of one’s life.  (It isn’t always during the end of life period).  At the time it was recommended, doctors were waiting for the results of genomic testing, and were very concerned about my extreme shortness of breath, coughing, and feeling of chest pressure.  My tumor was(is?) in my left lung hilum, a rather tricky spot (kenhub.com hilum info), where some important stuff happens that shouldn’t get blocked.  All we knew is that we came to Dana Farber for the best treatment and we were going to follow their advice.  We didn’t see many other options jumping out.

So, it was explained to us that to give me relief quickly, I would have “30 treatments worth” of radiation in 10 treatments.  Five days per week, two consecutive weeks.  The hope is that the tumor would shrink quickly and I would be able to breathe.  Sounded like a good plan.  Now after a month of tests we’re finally going to do something to get rid of this beast inside me.  Let’s go!

After meeting with the radiation oncologist, the next step was mapping. For the mapping I was on a table like for any scan, but there was something like an inflatable beanbag under me, that when deflated molded right around my body. In the room was a Dr. and two young technicians.  I was wearing a Johnny, but of course that didn’t really matter as they needed to access my chest.  Now I hadn’t really thought about this too much, but they needed me to be lying just as I would for every daily dose of radiation of course, and what they were mapping was my chest.  So, there were my somewhat aged, floppy breasts being ever so gently moved and set back in place while the process happened.  Luckily for me, I’m not too uncomfortable being partially nude in the medical setting, but I hadn’t put much thought into what they needed to do, or how long it would take.

Contrast dye CT (an IV for this) and lots of marker on me (here, there, and everywhere in different colors above, on, beside, and under my breasts), with a machine giving them the exact measurements of where to mark (looked like green lasers swirling around), 30 seconds of monitoring my breathing, and then my tattoos. Four tiny dots, smaller than my moles and freckles – good thing they are a different color. One above one breast, one under the other breast, and one on each side of my rib cage.

After several days of Quality Assurance testing on a dummy, there was a trial run on me.  I was put in the mold they made last week during radiation mapping (that’s what the inflatable thing was for!) and had x-rays, using the coordinates of my tattoos to make sure that what they are hitting with radiation will be what they want to target. Quite an amazing process.

The radiation machines are assigned color names.  Mine was purple, a good sign because that is my favorite color.  It was explained to me that within a few days I would likely have side effects (skin “burning”, fatigue, cough -already had one of those, soreness in my esophagus and throat, and loss of appetite.  There also may be some additional side effects months after radiation.  At that point I just wanted to breathe and feel like we were doing something, and a liver biopsy the day before starting radiation confirmed that the lung cancer was there too, so the radiation needed to be completed before beginning what we thought would be chemotherapy treatment.  (Received confirmation of the ROS 1 cell mutation during radiation and treatment would be a targeted therapy drug, but that too couldn’t happen until I recovered some from radiation.)

I ended up having 10 radiation treatments.  Each day you check in, go to the dressing room and put on your Johnny, leaving on undies, socks, and shoes, and then sit in the waiting area, completing a questionnaire on a tablet about symptoms.  Dan would wait in the waiting room where we checked in.  I seldom waited more than a few minutes and then into the treatment room, climb up on the table (a struggle because of broken ribs due to coughing), lie on my mold, and hold still while the machine hovered over me.  I think that an X-ray or scan was done each day as well.  Of course, for their safety, the technicians running the equipment are in a different room once they get you in place.  When you’re done (5 minutes later) they come back in and you’re on your way.

Over the days (even for just two weeks), you start to build relationships with the technicians and the radiology/oncology nurse that meets with you daily.  One day a technician admired my purple sneakers, and the following Monday announced that she had purchased a pair over the weekend.  (That’s what began my search for fun socks, shoes to entertain technicians when I have tests done.  Almost always you can keep your socks and shoes on when they’re looking at your top half.). The nurse was the one who kept track of  your “vitals” (stats on everything from weight to heat rate), asked about appetite and pain, and offered suggestions to either help prevent or relieve the radiation “sunburn”.  Dan would join me for the check in with the nurse.

Once a week we were scheduled to meet with the radiation oncologist.  But I think we met with him four times.  He always showed us the X-rays or scans that were done. On one visit we had just learned that I had the ROS 1 genetic driver and would go on a targeted therapy drug.  He was SO excited!  He said this meant there was a treatment that would target only the cancer, not my whole body like chemotherapy would, and it was known that it works on my mutation.  Lucky me!  He really did have us feeling like we’d won the lottery.  (And really?  On the cancer journey, we had.) Once he explained that my lung had partially collapsed, but that he hoped after radiation it would re-inflate itself. (And it did!)  He also, very sadly, told me near the end of radiation that it really had done nothing to shrink my tumor, but I would still, for months to come, likely suffer the side effects from the radiation.  He was genuinely sorry about this.

Now, what was life like during this time?  Well, Dan and I stayed at the Hope Lodge (free thanks to the American Cancer Society) in Worcester, an incredibly beautiful, old Victorian(?) home with original woodwork throughout.  We would get up early, drive to Boston, park in the Dana Farber parking garage, go up to the third floor to eat breakfast in the Dana Farber cafeteria, and head down to the below ground level where radiation takes place. This all involves quite a bit of getting in and out, up and down, and walking.  Toward the end of my treatments, Dan thought I should use a wheelchair.  We didn’t.  We did go very slowly, but we had time.  And, we had learned from Mt. Kilimanjaro – polepole (go slowly in Swahili) breathe!

Once done with radiation, unless there was another appointment, we returned to Worcester to Hope Lodge where I rested, and likely Dan watched me rest.  Our room at the Hope Lodge was upstairs (that was a known before staying there).  Once in our room we didn’t go out much because I became so fatigued from the radiation that the stairs seemed like a mountain. While there we got to know other visitors/patients and the staff, often sharing meals with them. I wish I had felt better as I would have enjoyed talking with them more.  There was a large shared kitchen with refrigerator and storage space for each patient, so most meals you prepared yourself, but each night we were there dinner was brought in or prepared by a volunteer organization or group.  Oh nice is that!  So, at dinner we ate family style. I wasn’t really able to fully appreciate or enjoy the dinners at that time, but it was truly thoughtful and there’s always something special about sharing a meal with others.

On the weekends before, between, and after radiation Dan drove us the five hours home so we could “just be home” for a day and a half before heading back again.  While home magic happened and our laundry was done and food resupplied.  My job was to rest and keep breathing.  That’s all I did.

I will always have damage from the radiation.  A few months after I had lung inflammation (pneumonitis) that needed to be treated with steroids.  The fibrosis (like scar tissue) continues to worsen even now, 21 months later.  This was a surprise to me.  I was told it could continue to have an effect, but I didn’t realize it could continue to worsen.  I think I was lucky with my esophagus, or at least so far.  Things that are quite hot (temperature) bother me going down, and I try not to eat much spicy food.  I have developed a hiatal hernia, but have no symptoms.  I’m sure all of this damage could be much worse, so I feel fortunate.

Take-aways from this part of the journey:  the experts are doing what they think and hope will work, but nothing’s a given; even when desperate, try to take time to consider pros and cons; compassionate people are everywhere you go; caregivers are lifesavers.  Always stay hopeful and strong.

 

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