Nice to be Loved!

IMG_2869 2

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.

 

Advocacy and some ways YOU can help!

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

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

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

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

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

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

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

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

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

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

 

Sharing the Journey

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

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

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

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

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

 

 

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!

 

Road Trip!

Believe it or not, but Dan and I love our road trips to Boston every three, six, or eight weeks.

Ever since I moved out of the middle back seat (wedged between two grumpy siblings), I’ve loved road trips.  My mother-in-law, daughter, and I went on countless trips: day trips, overnight trips, shopping trips, college trips.  It didn’t matter to any of us the purpose, we just loved going together.  Once we traveled across three mountain ranges in winter in a Geo Metro to visit colleges – now that was a trip.  Dan and I always took the kids on a road trip somewhere in New England in April.  Boston, Mystic, Sturbridge, Springfield, Dinosaur State Park in Rocky Hill, CT – that was exciting to the young expert in the family.

Even before we got the cancer diagnosis, Dan and I knew that if ever we did hear those dreaded words, we would go to Dana Farber Cancer Institute, five hours away.  Road trip!  That would be the easy part – we know how to do this.  Our first road trip to Dana Farber included Dan, me, and my sister – my other caregiver.  We were on a mission, the only known was the destination.  We booked a night that quickly became a few as we jumped on the train of the cancer journey. Since then there have been countless (not really true, but I haven’t counted them) road trips to Boston.  Most of them are just the two of us (Dan and me), but some have included my sister or our son, and once we (my sister and I) made the trip without Dan. Early on, for some I was pretty sick and spent the drive sleeping, so I “missed” those trips.  After trying a couple of routes and a couple of different hotels, we’ve settled on what works for us.  We’re lucky that we’ve got a good car for traveling, and the funds for gas, an overnight stay, and meals.

Road trip!  Let’s enjoy it.  Enjoy it?  Two days of being on the road and at the hospital? (We don’t feel we can take more time away and sightsee, etc. because our three little dachshunds and goats miss us!)  But, enjoy it knowing that it’s traveling and a day of tests and appointments?  Really?  Well, why not? So we do!  We’ve got it all down. My appointments are on a schedule (8 weeks, 3 weeks, or 6 weeks apart).  Our suitcase stays packed with the extra change of clothes, travel toiletries,  and coffee and tea supplies.  I try to remember to book our room several weeks ahead. Our daughter is alerted of the dates for pet care.  The day before the road trip I finish the packing.  And then we’re off!

Just imagine having five hours of uninterrupted time with your best friend!  Heavenly.  What would it have been like years ago if someone had given the two of us “all expenses paid” trips every few weeks?  Heavenly!  Well, we have this road trip we have to do and pay for, so why not look beyond the reason?  We spend the drive time talking, and even though we’ve been together over 40 years, we love to just talk, about anything and everything. When we feel like stopping to eat or take a break we do. Now that we have our favorite route, there’s always different animals, seasonal changes, and such to notice.   Like turkeys in Brookline.  True story. They live amongst the most beautiful homes, right in the city. And then there’s Dan’s favorite little school to look for, a childcare/preschool.  Often the children will be out with Mr. Rope on the sidewalk in Boston, just like my daycare children when we walked around Blue Hill 30+ years ago. (Just like and so just not like!)

Then we arrive, usually mid to late afternoon.  (Sometimes we leave really early for an afternoon appointment, but usually we get  there one day for an early morning appointment the next day.) We park in the hotel parking garage, relieved to not have to take the car out again that day. We check in and have a cup of tea and a little rest. Pretty nice!  Watch a little TV or watch the city streets out the window.  Interesting.  Then we decide where to eat dinner.  Choices are numerous, especially with delivery, but we’re creatures of habit, so we choose between the hotel restaurant and the Italian restaurant near Children’s Hospital.  Almost every time we go to the Italian restaurant we are seated in the same spot. No joke. Corner booth. What is it about us that makes this happen? Maybe we look like hicks from Maine. Or weary hospital visitors. But I prefer to think we look like lovers wanting to be left alone to stare dreamily into each other’s eyes.  After dinner, on the walk back, is when we do our people-watching.  It’s always interesting to see all the people rushing to their destination, never stopping to even nod a greeting to anyone.  Such a different world.  And then, after dinner we have until the next morning to enjoy our trip, pushing it’s true purpose from our minds.

The next morning the alarm goes off early enough for showers and packing up.  Our appointments will last long beyond checkout time.  Depending on how early we need to be at Dana Farber, we try to eat (or just Dan eats) at the food court or the cafeteria before heading to appointments.  Here’s an example of a typical appointment schedule. First drive one block to Dana Farber and park underground usually at least four levels.   6:30 AM arrive at Dana Farber D3(3rd floor) for Brain MRI. This means taking of everything but my undies, putting on a johnny, having an IV put in that will stay in for a few hours. Then into the cold room, and getting up on the table in the right spot, cushions beside my ears, a “hockey mask” clamped over my face, and into the tube I slide. Halfway through I’m slid out to put the contrast dye in my IV. After listening to some pretty strange and very repetitive noises, I get out, dress, and go find Dan.  Dan waits the 50 mins or so (reading,  texting, looking up sports stuff on his phone).  As soon as I’m out we rush to the elevator to head down to floor L1 (lower level, underground) for a 7:40 AM appointment.  We are there for a while. That appointment starts with a blood draw (from the IV they put in for the Brain MRI), followed by a bottle of the most delicious drink that I must drink in 30 minutes. Wait for my turn.  Then the CT scans of my chest and abdomen.  As long as I wear no metal, I can keep my clothes on, no johnny! Those scans are quick. Lie on the table, a couple of scans, inject the contrast dye into my IV, two more scans, and off I go, with a reminder to drink lots of water.  Dan, he’s been waiting.  But during the time I’m drinking the stuff, we’re enjoying our time, talking about home, something in a magazine, just talking. (We’ve figured out that we both just want to be together, regardless of the circumstance or situation – whatever it is, we’re together!)  After that appointment is done (takes 2 hours total sometimes), we check to see if there’s time to stop at the cafeteria on for a snack (I’ve probably not had breakfast) before heading to the 10th floor where thoracic oncology is.  On this day we do! (This is for real in two days – we’ll see if I’m right!)  10th floor 11:00 AM EKG  This has something to do with being in the Lorlatinib clinical trial. I can’t take my med on this day until after the EKG and Dr. appointment.  For the EKG they stick electrodes all over you that read the electrical activity of your heart.  The EKG is followed by “taking vitals” (blood pressure, temp, weight, O2, heart rate). Then we wait for the appointment with the doctor, research nurse, and program coordinator, scheduled for 11:30AM.  We decided a long time ago that we would never grumble if appointments at DF didn’t happen when scheduled.  It runs very efficiently compared to other medical facilities we’ve experienced.  If our appointment is late we know it is because another patient or family needed their time.  We can wait.  We are grateful to be there.  If all is well with the morning’s tests, the appointment is really just a check-in about side effects and symptoms.  When it is over we have our last stop at the pharmacy on floor 2 to wait for the medication (one cycle/3 weeks’ worth only). Finally we’re on the parking elevator headed down to the floor that we now always remember we parked on.  If lucky on this day that starts at 6:30 AM, we’ll be on the road again by 1:30 PM.

That was one long paragraph! Well I thought about writing it as one very long run on sentence.  For me, that is how it feels. Nonstop.  No time to take a breath, even with the waiting we might do.

And then Dan drives us home.  Very long day for him.

Once out of the city we talk about the appointment and I send texts to let the “kids” know how it went.  Then we decide when/where to stop to eat, fill up with gas, etc.  I try to stay awake to keep Dan company – it’s the least I can do for my chauffeur/caregiver who won’t let me drive.  Dan calls it Driving Miss Rinnie!  All I know is that he must truly love me.

Five hours later we pull into the driveway, hearing a chorus from all sides of dachshund barks and howls mixed with the bleating of Naughty Dottie and her sidekick Matilda.  Home. Together.

Three weeks later…

cancer Stinks!

There are words I intensely dislike, and so I don’t use them.  But, that’s not what’s happening here in this title.  What I really mean to say is that cancer stinks, yup it smells really bad. When I was the most ill, everything that came out of me (in any way) smelled REALLY awful.  My breath, my sweat, my flatulence, … everything.  Not that body odors are usually sweet smelling, but I’ve never been a particularly stinky person.  (Well, the me before cancer I mean.)

This all came rushing back to me this weekend when I was ill.  I’m much better now, but I had some virus going around with everything from body aches to diarrhea.  And back came the stink full force!  I know it wasn’t my imagination, it was the same odor, the cancer stink.  Now I’m not saying my illness this weekend was cancer related, but it smelled the same.  Probably no research on this and now that I’m better I smell better!

One cancer stink doesn’t really go away – the flatulence one.  I know everyone’s toots stink, but cancer toots top ’em all.  Don’t believe me?  You could ask Dan or my grandkids, but they might be too polite or kindhearted to answer (even though we joke about it). Just ask my dogs.  Especially the two that sleep under the covers, against me.  You get the picture.  My dogs are very forgiving.  cancer stinks.

When I was first diagnosed I remember apologizing to Dr. Gandhi for my exceptionally stinky sweat.  She was the one who confirmed for me that it was cancer stink.  On that day I was too busy trying to stay alive to spend more time on the topic with her, but I wish I could.  (She has since left Dana Farber.)

I know I’ve read that dogs have smelled their owner’s cancer before diagnosis.  I’m quite sure my dog Rusty diagnosed me way before anyone else – he knew how sick I was before we realized it – maybe it was the cancer stink.  He was very attentive this weekend, so maybe he smelled the cancer stink too.

All I know for sure on this one is that cancer STINKS!