heroes – polepole ~ breathe

Trot, trot to Boston!

Remember that nursery rhyme? No? That’s okay. Like many nursery rhymes, it really isn’t as baby friendly as a rhyme ought to be.

Good news! All the test results I did receive so far from my whirlwind day at Dana-Farber yesterday are just the same as May. Stable. No progression seen in chest and abdomen CT scans. And, blood tests results (except cholesterol) are very good. In the days of COVID-19 I didn’t get a same day reading of my brain MRI, but I am expecting that to be okay too. (Power of positive thinking, and I’ve no new symptoms.)

Because of a mix-up in scheduling, DF wasn’t able to get my testing all done in a timeframe that made it possible for my superhero chauffeur to drive to Boston from home, wait in the car, and drive back home in one day. That presented a big problem in my mind as the only buildings other than ours that I’ve been in since March 8 are 2 health facilities. So, ugh. Decisions, decisions. Postpone? Twelve weeks is already the longest allowed time between appointments when in this clinical trial, and from our perspective it is plenty long enough. So no postponing. Because I learned about Thursday’s appointment Monday afternoon (it was first scheduled for next week, which I thought seemed odd because that was 13 weeks), it was really too late to ask someone to go with us. And besides, you know… COVID-19. (Not fair to ask of someone.) Ugh, okay. Well, in May everyone we saw on the streets wore a mask, and at DF I felt as safe as one could in these times. The Inn at Longwood, a hotel a block from DF, is accustomed to medical patients staying there, so they must be careful. Fingers crossed. I packed enough food and water for two days, and decided we could get to a room with no/minimal contact and sanitize surfaces when we got there. (I did not take our own bedding.)

We left home at 2:45 AM. We always allow some time for traffic. For the second time, traffic, even going into the city, was light. (I think many may be still not working, not traveling, working from home.) We already knew that Dan wouldn’t be allowed in with me. (Typically during the day of appointments, there’s down time to be together, I know he’s just outside the room waiting, and he’ll be at the appointment when we hear the results. But, that can’t be in the days of COVID-19.) His plan was to sit in the car until he/we could go to the hotel. Fun, huh? Me? Even more fun, if possible. The day (and trip) worked out pretty well. But to me it seemed like lots of exposure to lots of spaces and people. All masked. All distancing. Here’s a recount:

8:00 AM start from parking garage.

Elevator (alone) to Floor 1 Yawkey. COVID-19 screening questions, get surgical mask (everyone, even if yours is comparable). (Two different people) Get badge showing I cleared screening, learn that because we’re a little early I must wait in cafeteria before going to lab.

Elevator to Yawkey Floor 3. Sit in cafeteria, touching only my phone to text Dan and call hotel.

Elevator to Yawkey Floor 2. Check in with receptionist for labs. Get the usual clip on badge that can find me, answer same COVID-19 questions. Sit in waiting area. Go to lab, nurse draws blood and puts in IV.

Elevator to P2, walk through “tunnel” to Dana. Screeners there see my badge.

Elevator to Dana L1. Check in for CT scan. Same COVID-19 questions. Sit in waiting area. (Everywhere chairs are spaced, and the number of people is much lower than typical. Makes me wonder how many people are putting off treatment. You can’t zoom scans.)

Called into room where typical CT scan questions are asked and to get nasty drink. (Person again got drink, and wasn’t wearing gloves. Yes I want a straw, sanitary I hope inside that paper.)

Back to waiting room. Same chair is empty. Wipe hand sanitizer on bottle. Spend 30 minutes drinking nasty drink.

9:50 AM CT scan. IV unwrapped and flushed, scans. Dye in IV, scans. IV flushed and wrapped. (I still wonder how you can taste the saline so quickly or at all when flushing the IV. I need to google and watch an animated video of that.) CT tech says MRI called and I can go there now instead of 1:00. Okay! Wait, we’re going to try to check in at hotel. Send quick text to Dan.

Use bathroom on Dana L1 before leaving.

Elevator to Dana 3. Check in with MRI receptionist. Same COVID-19 questions. Sit in waiting area.

Tech comes out to get me. Changing room and locker. All off but undies – hospital johnny, pants, and socks.

Into prep room (my term) where MRI questions are asked and IV unwrapped and flushed. Same Tech.

Into to MRI room. Mask upside down. (The nosepiece will show, but on my chinny chin chin.) Lie down, two techs (I’m not sure what their professional title is.) tuck me in. Nighty, nighty. Halfway through I’m hauled out (don’t move!) for dye to be put in IV. When done, back to changing room. Take clothes from locker, dress. Go back through waiting area.

Walk across bridge (indoor) from Dana to Yawkey.

Elevator to P5. Hand sanitize and get in car, interrupting Dan’s lunch.

11:30 AM Hotel parking garage, check in, sanitize room cards, elevator to Floor 7, enter room, and wipe down as much as sensible (maybe more). The room looked very, very clean when we entered. Things like remote were wrapped in plastic (changed each time).

Put food in fridge, have lunch and rest in hotel room. Both unexpected and appreciated. Usually there’s no time for me to eat (or I can’t before a test/procedure) and I never really rest on DF day.

2:30 Elevator to lobby. Walk one block to DF. Everyone is masked and distances.

DF Floor 1. Ask if I need screening again or new mask. Young man handing out masks says no. Good thing I have on a new, clean surgical mask.

Elevator to Floor 10. (one other person). Check in at receptionist for EKG and Dr. appointment. Same COVID-19 questions. Sit in waiting area. Very few people in a very large space. Feels so different. Thinking about going to my appointment without Dan, I am grateful that the people coming to their first appointment are allowed to have a companion. And no, I’m not going to FaceTime the appointment. If there’s hard news, I want to be with Dan when he learns about it. Okay, enough of that. Good news is what we got.

Into to room with nurse for vitals to be taken. No I don’t want the kg to lb conversion, thanks.

Into different room for EKG. Lie on bed/table Socks down, shirt up. Sticky pads here, there, and almost everywhere. Two nurses (I’m quite sure they are nurses) – one supervising the other who does the EKG.

Back to waiting room. Different chair.

Another person takes me to the exam room for my appointment. This day I saw a NP. When I first started at DF I frequently saw Margaret, so I was excited to see her, and always am happy to see Nurse Dawn (clinical trial nurse). Margaret and Dawn come in together. We talk about tests (all good, MRI reading next day) high cholesterol (it is a known med side effect, but as Margaret said, “We don’t want for your heart to be damaged by the medication”, maybe trying yet another new med for the cholesterol.) We discuss other side effects (neuropathy is “okay”, weight gain makes many aspects of life difficult). Up on exam table/bed. Lungs and heart sound good. Off to get next 12 weeks of trial drug.

Elevator to Floor 2, one other person. Push button at trial drug window of pharmacy. Not ready. Sit in waiting room. Sit in waiting room. Sit in waiting room. 45 minutes. Get med. No touch, expect bag to drop in my bag. (Can’t walk the streets with a clear bag of pills, even if they won’t do anything good for nearly 100% of the population.)

Elevator to Floor 1 (Never see stairs offered as choice.), one other person. Out the door! Yay!

Walk back to hotel. More people, still masked and distancing. Remarkable and impressive. (Especially since at the Rusty Lantern in Augusta where we filled the gas tank, no one going in and out of the convenience store had a mask.)

Into to lobby and up the elevator to Floor 7. Into room, wash hands, change clothes. Brew tea.

Nothing to it, right? A full day. I am not complaining, just hoping to help people understand. It’s tough and tricky. It’s tougher and trickier in the days of COVID-19. And I really have it very easy compared to many. I am grateful I am a very healthy 63 year old, living well with stage IV lung cancer. I am grateful little ROS1 is treatable, knocked on his fanny for now by the honorable Lady Lorlatinib. I can deal with the side effects, as they are currently. I am grateful for my Dana Farber team. A special thing I learned – Dr. Ghandi, my first DF oncologist has returned to DF! Not Floor 10, but back, so that is very good news for DF. We will forever be grateful to her for giving us so much hope at a time when others are made to feel so empty of any hope.

And, now here we are. Back at camp, finding joy in the everyday every day. At 5:00 AM we left the parking garage in Boston, stopped once to fill up the gas tank (Dan, hand sanitizer used), and were greeted by happy goats and dachshunds! And, a little more sanitizing because our spoiled puppies had overnight guests. Thanks Mandy and LL, for staying over. (They DO NOT like being left, even when checked on. Peace of mind for all of us.)

Thanks for reading, and for your support. Be kind to others, please. Try to find joy in your day every day, it helps. And please vote. If by mail, vote early! Love to all.

Free ME from Lung Cancer 5k

Today was a perfect day. It’s easy to find perfect days when you look for them. Today it was just there. Team polepolebreathe.blog participated in the annual (our third) 5K benefiting Free ME from Lung Cancer. The weather was beautiful, perfect I think for running, and not cold for those of us cheering on the runners. There’s a not too serious rivalry between mother and son that’s always entertaining. My grandson barely beat his mom, but she placed higher in her age group than he. A tie, I’d say. As you’ll see in my selfie, I stood tall through it all, feeling blessed to have the team there in my honor. I’ve been deciding upon a new important goal to strive for – the next thing I want to achieve on this journey. Staying alive is a good one, but that goes without saying. My goal? Next year I hope to participate in the 5K. If I slow-walked up a small mountain, I can finish a 5K. And, I know team polepolebreathe.blog will be walking beside me or at the finish line tapping their toes waiting for my arrival. (They are runners after all!) Join us – I expect it will be a perfect day!

My cancer journey so far (written for ROS1der Feature Friday)

On Christmas Day 2012 Dan, my husband, and I were standing on top of Mt Kilimanjaro. April 2015 we spent a few days backcountry backpacking in the Grand Canyon, hiking down and back up with 30 lb. packs. By November 2015 I couldn’t go up the stairs without huffing and puffing, and I had a nagging cough. My PCP had put my symptoms (fatigue, headaches, the cough) down to stress as we’d experienced a house fire in August 2015. Guess again. I found myself taking a medical leave from teaching in November 2015. On Sunday, January 3, 2016 Dan took me to a walk-in clinic because I couldn’t breathe well. The FNP saved my life by doing an x-ray. How simple was that.

After a bronchoscopy biopsy and a PET scan in Maine, I self-referred to Brigham and Women’s and Dana-Farber Cancer Institute in Boston. They immediately did radiation as palliative care, trying (unsuccessfully) to reduce the tumor, and a liver biopsy to ascertain that the lung cancer had spread to my liver (and colon). Testing for a gene alteration was done despite initial insurance denial. Dana-Farber Cancer Institute is very adept at patient advocacy. My DFCI doctor was so excited to give me the news that the cancer was ROS1+ and there was a targeted therapy drug to treat it. Hope! She said I’d do well in treatment because I was young and healthy! (I was 58 and dying.:) Something she said that day seared an image in my mind of nasty little ROs1 driving his speedster throughout my body and the TKI choking off the fuel. Dana-Farber is a place of hope, caring, and expertise. While researching ROS1 I found another place of great hope, caring, and expertise – the ROS1der website and FB group. I am so very grateful for this forum.

I began taking crizotinib March 2, 2016. After finding the right combination of anti-nausea meds and a good supplier of Imodium, I tolerated it well. Within a week I was breathing easily. While never NED, everything was greatly reduced and remained stable. By summer I was swimming and exploring with our grandchildren at our camp. My scans were 8 weeks apart.

In March 2017 I began having odd headaches. A brain MRI determined that ROS1 had evaded the hero crizotinib, crashing through the barrier and entered the lining of my brain. (Leptomeningeal carcinomatosis, shouldn’t have researched that one. The statistics available are outdated.) Again DFCI offered hope. I qualified for a clinical trial for lorlatinib, a TKI that does penetrate the blood brain barrier. I stayed on crizotinib until one week before beginning lorlatinib in July 2017. I gave up teaching to make keeping my body strong and healthy my priority. Within weeks the cancer seen in my meninges was reduced by 80%, everything else remains stable. My dosage was reduced early on due to painful neuropathy. I now have a brain MRI, CT scans, labs, and appointment once every 12 weeks, with labs at 6 weeks. Twenty-nine months so far!

My days are filled finding joy in the everyday every day. In May I reached the first goal I set at diagnosis, attending my granddaughter’s college graduation. I recently hiked (slow-walked) a small mountain. I try to tell anyone willing to listen about the prevalence of lung cancer and the importance of testing once diagnosed. I write to local papers, and to local, state, and national officials. My family participates in the Free ME from Lung Cancer annual 5K. I serve on a patient and family advisory board of the Maine Lung Cancer Coalition, and I participate in a phone buddy program, offering hope to others. My blog, polepolebreathe.blog is named as a reminder that slow and steady wins the race. Pole pole means slowly in Swahili. That is how Dan and I followed our guide to the top of Africa one Christmas Day, one step at a time. Always, always have hope. 59233457353__C7F9845D-C46E-45CE-9B6B-667E849E2D3A

Health Update July 3

Health Update July 3, 2018. “Scans look good! Blood work is all the same. How are you feeling? What have you been up to?” This is how the oncologist (one of my heroes in this journey) comes into the the room. “Phew! I feel great now,” I think. Moments before Scanxiety had taken a stronghold over my usually calm mind. It’s nerve-wracking, this journey in which the things that are likely or even certain to happen eventually (like drug resistance) may carry with them few to no options at this moment in time. Time on a drug means time for researchers to work their magic and develop the next line of treatment.

Just to recap this journey – diagnosed Jan. 2016, metastatic non small cell lung cancer -tumors in left lung hilum, liver, pelvis. (NO. I never smoked. Silly you, silly me. I HAVE LUNGS!) Okay, enough on that. Radiation to lung as palliative care. Genomic testing showed that the ROS1 mutation is driving this cancer. March 2016 – First wonder drug crizotinib – lung tumor can’t be seen, others stable! March 2017 – nasty beast crept into my brain meninges where crizotinib couldn’t go. But while the fair lady crizotinib was saving my life, researchers were developing her stronger, more versatile friend Queen Lorlatinib. July 2017 – entered Lorlatinib trial. Lucky to be able to do that at my treatment center. (That’s why we travel to Boston for treatment, they’ve kept me alive.) Clinical trial means trips to Dana- Faber every three weeks, then six, now every nine weeks. Both drugs are oral, taken once or twice a day.

Today marked a year on lorlatinib. My appointments began with a blood draw and IV inserted. For the first time, the first vein didn’t work, so I got stabbed in both arms. Next up was the brain MRI. The techs complimented me on how well I did. “Practice, lots of practice!” I replied. When they apologized, I said, “Oh no, it just means I’m still here and that’s a good thing!” Then I got my yummy drink for the CT scans of my chest and abdomen. All the while Dan waits patiently. After these tests in Dana, we walked through to Yawkey for lunch and then up to floor 10 for my EKG and Dr. appointment. Here’s why the Scanxiety set in at that moment. After doing vitals (good, oxygen a little low), instead of doing the EKG, the nurse took us through a different door than usual to a room to wait for the Dr. This weirded me out big time – not my routine, not his room, what’s up?! Nothing, it turns out. Sorry that I scared us both. Different room probably because Dr. Janne doesn’t usually see patients Tuesday, but was going to be away Thursday. They truly forgot my EKG, maybe in their excitement to go home for the holiday. Did it after the appointment, and it was fine too. All good, see you in September! Camp Gramma is good to go for the rest of the summer!

Now, I write this blog for a few reasons: to keep those who care updated; it’s therapeutic for me; and to inform people through sharing my experience, and advocate for those on this journey of living with metastatic cancer. I know I’m lucky to be alive. That being said – it’s not like someone chooses to have metastatic cancer. I can now though help others by sharing – thus bringing purpose to this experience. So when I get wordy or meander off topic, it’s likely meaningful to me for one of the above reasons. You get to choose – don’t read it, read the first paragraph to see that all is okay, read until I wander, check out the tags and see if you can tell why I chose them, or read it through. No quiz at the end!

Today too I had to re-sign my clinical trial agreement as there were some changes. One is great news I think for my fellow ROS1ders. The trial is expanding from 30 individuals (with ALK or ROS1 NSCLC, brain progression) to 48. More lives saved! And the other reason is that now the side effects are better defined, and one with a small chance of happening is a very serious heart condition. But seeing the list of side effects brings up a part of this journey that I touch on, but try not to dwell on. It is though what I and anyone else on these drugs experience and some we will deal with for the rest of our lives, however long that may be. Keep in mind that before cancer I took no daily medication, and have no other health issues. Here are the risks on the lorlatinib list that I experience: increase in cholesterol and triglycerides (take a statin now for that); damage to nerves in arms, legs, feet, and hands (tingling, numbness, pain, tendon inflammation now in hands and feet) – drug is reaching my brain!; mood changes, including irritability (I don’t see it much, but I’m pretty sure Dan does and helps me through it) – drug is reaching my brain!; slowing of speech – drug is reaching my brain!; swelling of legs; fatigues; weight gain (can’t change this no matter how hard I try). There are others that I don’t experience. My strategy in thinking about this is to do everything I can to keep my body and mind as healthy as I can. No sense in thinking too much at this point as to what damage the treatments and the tests (at least 14 brain MRIs, 14 CT scans in just over a year) are doing. Actually the idea of dealing with the long term effects simply gives me hope that there will be a long term in which to deal with them.

Always have hope, faith that there’s purpose in your journey, and love for and in your life. That’s it for now – I think my mood’s about to change! And laughter, always have laughter in your life. Maybe some children, kids, and dachshunds too! Thank you for your thoughts, prayers, and love. Love to all. Enjoying the everyday, every day here, there, and everywhere – that’s me.

Camp 2018

Father’s Day 2018

Father’s Day, a special day to honor fathers. As I write this Dan is coaching a Little League game. He is coaching with Tim, our son, who is also a father. On the team is Tim’s 12 year old son, one of our five grandchildren. It is the last game of the season. This may be the last time these two fathers have the opportunity to coach LL together – with much sadness they think this is so, I’m not so sure. Time will tell. To me, on this day before Father’s Day, what they are doing is one day in the greatest of love stories, This story includes not only them, father and son, but my father as well.

I shall try to tell this baseball love story through my eyes, watching it for the past nearly 40 years. Baseball is only the vessel, or vehicle perhaps, in and through which this story unfolds. Not that baseball isn’t one of their passions! Believe me, they all shared a passion for the sport, especially Little League. But passions, I think, are developed, nurtured over time, under certain conditions. And in this story of mine, those conditions are love, time, and dedication. Their many talents and skills, innate and learned along the way flourished under these conditions.

I don’t really remember quite how the beginning of this baseball love story all came to be – I’m sure Dan could fill in the details for me, but it’s my story, so… When our children were young, about 7 and 5, my dad recruited Dan to help coach LL baseball when my brother was playing. We were part of the group to begin official LL in our area. I recall many meetings before Coastal Little League was a reality. A desire to see something done correctly, well and be sustainable brought people together, for the players – children ages 9-12 at the start. Dad and Dan, working together, were instrumental in making that happen. Looking back, this was the first test of the conditions of my story – love, time, and dedication. My dad and Dan’s relationship strengthened and flourished through their shared passion for youth sports, in this case baseball.

And so it was, before our children were old enough to play, Dan became a LL coach. And because we always did everything together – our children grew up at the ball field. And the baseball love story flourished – often with my dad keeping score, Dan coaching, and our son usually sitting on the bench, soaking it all in. All-star play was especially exciting in those beginning years with Dad as official scorer, a role he kept for years, and Dan learning to become the great coach he is today. And then it came time for our children to play – first our daughter who went on after LL to play softball in middle school and high school, and then our son, where the father-son baseball love story took on a life of its own.

Dan loved coaching Tim’s team, and they were a fun bunch of kids. Tiny, but mighty. We lived LL baseball for four years. (Many more before and after, but four with Tim in LL.) Regular season, all-stars, tournaments, Blue Hill Fair – they just couldn’t get enough baseball. The summer of 1990 was maybe the pinnacle of the LL experience for many of those involved. It was a magical summer. Father and son lobstered together by day and played baseball at night. If they weren’t playing baseball, they were talking baseball, strategizing and preparing for the next big game. As a catcher, Tim became the coach on the field, able to see the game only as one with experience can – at 12. The highlight of this summer was making it to the State Tournament. I well remember seeing them all -grandfather (my dad), father, and son as they looked over the beautiful new field they would be playing on, as they worked together, again – scorekeeper, coach, and player over the course of the tournament. There were so many moments lived and memories made that are truly priceless from those few days. Not just for them of course, but my story is about them, the fathers in this love story. Love, time, and dedication: to youth baseball, to doing things well, to one another, sustained over time, through love.

Dan continued to coach Tim’s team until there weren’t teams for Tim to play on that he could coach. Tim played in high school, American Legion ball, and in college. His dad always there to watch him. Love, time, and dedication – most of all love – from it the others come. But the love story had been written and couldn’t end when a boy is 12 or 14 or when there isn’t a team to coach. There’s always a team to coach! Because when you’ve built something correctly and well, and you nurture it through the years, it not only sustains, but thrives, flourishes. And so started a new chapter in this love story – father and son coaching together, son as coach with father helping. It never matters to Dan. As much as he loved coaching Tim, he loves coaching with Tim. He admires his son’s knowledge and skills, the way he conducts himself, his way of working with youth. Dan talks with me about the things he can contribute to their shared passion when working together. “What love and dedication,” I think!

Dan’s early coaching led him to coaching many other youth sports over the years with our daughter Mandy and Tim, and even with our grandchildren beginning with PeeWee basketball 14 or 15 years ago. This year, 36 years after that first season of baseball, he coached his granddaughters’ elementary school basketball teams with Tim and Mandy both working with him. Love, time, and dedication: to youth sports, to doing things well, to one another, sustained over time, all through love.

Today I think of my father and how very happy, and yes – proud he would be to know how this love story has flourished. Grandfather and father coaching the son. Giving one another love, time, and dedication. And doing it well. May all children experience such love. My timeless love story, never to end…

And yes Dad (and all you other Coastal LL baseball fans out there), even though they are coaching and playing for what was once their rival team, they won the league championship today!

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Nice to be Loved!

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

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.

Dr. Pasi Janne, Dana-Farber, and Bonnie Addario, ALCF

Below is a short video of my oncologist with Bonnie Addario, both heroes. He is the head of Thoracic Cancer at Dana-Farber Cancer Institute. She is a 13 yr lung cancer survivor who founded the Bonnie J. Addario Lung Cancer Foundation. “The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. ” The foundation is doing some pretty amazing work with/for the ROS1ders. (ROS1 Global Initiative)

Dr. Janne and Bonnie Addario

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