lorlatinib – polepole ~ breathe

Another year!

Please, when things seem hard, look inside and find a glimmer of hope. A stage IV cancer diagnosis, or any “terminal” disease diagnosis, is such a sudden, terrible reality check. In a few days I will pass my seventh “cancerversary”. Seven years ago, on the first Sunday in January 2016, someone finally x-rayed my lungs. We then began this journey we’re on, what I consider my second life this time here on earth. In those next few months those close to me thought they might lose me. But it wasn’t meant to be. And here I am today, still with stage IV lung cancer (here, there, and pretty much everywhere), but a thriving cancer survivor. Please, feed that little glimmer of light, let it shine bright. Always have hope.

This second life we’re enjoying has been such a blessing to me. I have loved looking for new learning opportunities, even when cancer forced me to let go of many things I had so enjoyed in my former life. Hope is, I believe, what made it possible for me to say, “No, cancer, you cannot, you will not steal my joy.” I have made finding joy in the everyday EVERY day a priority.

Recently a friend sent me a copy of her 2023 Calendar book she published. It is filled with words of inspiration, words she hopes will be source of inspiration for her readers as they/we travel through life. When I received it in the mail just before Christmas, I decided to have a sneak peek to get a dose of inspiration to carry me to the start of the year. Her introduction made me certain I would enjoy this calendar and find it a source of inspiration as I travel to 2023. Imagine my awe when I turned the page and read: January 1, “Find joy in the everyday every day.” Corinne Pert. Wow, my words that have carried me through this journey with a special kind of hope, peace, and joy are now the words chosen to inspire others as they begin 2023. Wow, how very wonderful. My hope for others is that they give this simple, yet powerful mindset a try. From sunrise to Ruby Jean dachshund kisses at bed time, there are a multitude of joy filled moments in my day.

Hope and joy lead to peace within, I believe. My 2023 wish for everyone.

I don’t have a health update to share today. Just that I’m helping to positively change those statistics about lung cancer survival, and being at a research treatment center means others will benefit from my treatment journey.

This winter I’ll be cozy and warm in our winter home, on “our” side of the mountain, with Dan, the dachshunds, and the goats, with family nearby. Crafting, reading, and finding joy in the everyday every day. Blessed.

A beautiful day for a drive

Today was a spectacular autumn day for a drive. While Dan drove (Thanks, chauffeur, support person, and best friend!), I saw three deer, turtles on rocks, a lingering heron, swarming flocks of birds (unidentified, but songbird size and hundreds of them), and of course turkeys. The leaves as you head south were still beautiful.

And best of all? Those three sweet words – SCANS LOOK GOOD! No change in disease or in the blood work. So after a five hour drive south, a blood draw (all okay) and IV in, brain MRI (everything unchanged!), CT scans of chest (fibrosis unchanged), abdomen (same liver lesions, sclerotic lesions), and pelvis (pesky spot still there), IV out, and then a 4.5 or so hour drive home, we were greeted by hungry goats and happy dachshunds. Dr. Janne called for my phone appointment just as we drove into the driveway. Nothing needs to be changed, and we return in three months. A beautiful day for a drive.

Week of Scanxiety

It happens. Your appointment is coming up in a few days, a week or so, and the scanxiety creeps in. Are these muscle pains new? Could be I’ve done more walking on different terrain and stair climbing. Is my back lame from moving or …? Is this “my” neuropathy or … Why am I so tired? Could be I’ve gone nonstop doing things I love to do while getting settled again at home for the winter.

Anyone with stage IV cancer and regularly scheduled scans (mine have been at every 12 weeks for a while now) can understand and relate to this. For someone who does a pretty good job (if I do say so myself) of going about life finding joy in the everyday, it’s an unnerving feeling. I often don’t realize that it’s happening until I’m caught up in it. Today was an Aha! moment. As I completed my fourth check-in (blood draw, brain MRI, CT scan of chest/abdomen/pelvis, oncologist appointment) I came to the section that caused me to pause and say to myself, “You do a fine job of staying alert to changes while keeping focused on finding joy in the everyday every day”. And then, after grumbling to myself about why they couldn’t use answers for one test in the questionnaire for the others, I enjoyed a second cup of coffee while writing this post.

Thursday’s weather should be fine for a drive south to Boston. Thanks to my sister and our daughter and grandchildren I know the dachshunds and the goats will be fed and visited. Hopefully no one will be greeted by four goats grazing on the lawn. They think “the grass is always greener”…

Below is a screenshot of what caused me pause – the screen where I had to confirm my medical condition. And, two photos from my kitchen window this morning! Thanks for reading. Always have hope!

Find Your Place of HOPE

First, again I received good news after my blood tests, scans, and brain MRI! Still stable. Such a great feeling! We made another day trip to Boston, with a phone appointment with Dr. Janne and a fellow. It’s so reassuring to have scans and within hours have your oncologist say he has met with the radiologist and reviewed my results. Knowing you have a team with the highest level of expertise and access to research taking care of you is invaluable. Life saving in my case in January 2016, and likely again when I had leptomeningeal progression. And, this marvelous team, which extends to the office staff, even worked through all my new insurance issues. I had to do nothing. I didn’t even have to change the tire when we had a flat on the highway (along with the other person that ran over the same sharp, unidentified object) on the way home. Thanks, Dan! (He drives, waits with me, drives, and always gets me there and back safely.)

When newly diagnosed patients ask what is important, I say that there are two things. First, find an expert, someone who specializes in the cancer you’ve been diagnosed with. And second, find a place of hope. This is my response after hearing so many stories of people with inadequate care, and/or doctors who offer no or little hope. The first may seem obvious, but is hard to find in rural parts of our country and many parts of the world. The second is often overlooked, but ever so necessary. I just can’t believe how many people are told that with stage IV lung cancer you should get your affairs in order and likely have a few months to live. No hope. This is so wrong. At Dana-Farber, even at what seems like the most hopeless time of your life, they give you facts and a treatment plan, and offer hope through what a successful treatment plan will do. No sugar coating, but clear hope offered in a kind and confident manner.

People often think I must be in remission or cured. Nope. Stage IV lung cancer can be treated, not cured. If you’re lucky, like me, to have a specific type (ROS1 in my case) that has been discovered and has a targeted therapy it responds to, then you can expect to be on your targeted therapy until your cancer finds a work around. For some, that’s a few months. For others it is a few years. For a very few, it is a decade! And, new treatments are being developed and tested all the time (a long process though).

In the meantime, cancer treatments have many side effects. I repeat this to be a voice for the many who may look “healthy”, but are actually living well (as I am) with a disease, or may be really struggling. Right now I have a slightly collapsed lung. Maybe it’s not just the high humidity that’s been bothering my breathing. This has resolved in the past, so I know it will again. And then there’s the neuropathy. One of the reasons I keep stitching is to keep my fingers working. They’re in sad shape. I drop small things a lot and can’t pick up small things easily. But I’m still stitching! The neuropathy has crept up my hands to my arms, and up my feet to my knees, but it is tolerable, no medication required. High cholesterol from Lorlatinib? There’s a med (or two in my case) for that. I’m sure you get the point. Just be kind and considerate please. We don’t know everyone’s story.

My latest art play, in addition to stitching (just started a Christmas fabric journal), is natural dyeing of fabric and papers, in addition to eco-printing. Started with onion skins because they’re always (in my experience) successful, and some purchased madder extract (because that is supposed to also be successful). What a great science experiment! Animal fibers (wool and silk) dye differently than plant fibers (cotton, linen, hemp), and each slightly different from the others. Lots of variables – pre treating, pH, mordants, modifiers, time, and so much more. Great learning for me. And don’t worry, I’m still making journals!

Our garden is doing well. We’ve had lettuce, greens, and peppers. Peas and zucchini soon, and then so much more hopefully! The blueberries on the mountain are ripe. Dan and I, the dachshunds and the goats are enjoying our summer. Finding joy in the everyday Every day.

I appreciate your continued support, love, positive energy, and prayers. I hope you are living well and finding joy in your everyday. Thanks for reading!

A Place of Hope and Science

Another successful trip to https://www.dana-farber.org, one of our family’s places of great hope. After a day of scans(chest, abdomen, pelvis), bloodwork, brain MRI, and an appointment, I heard the words of hope – “Everything looks great!” Great=Stable, and stable means our Lady Lorlatinib continues to stay strong, keeping her thumb on the switch so ROS1 cannot take off and race throughout my body again. Well worth an 18 hour day, well worth the side effects, well worth making my chauffeur drive 5 hours, wait in the car, drive 6 hours (yup, hit rush hour traffic, first time since pandemic).

For the first time since beginning lorlatinib (nearly four years ago), my bad cholesterol is in the normal range. Great news! Thanks to the perseverance of my DF team, I am now taking a combination of meds that can counter this ugly side effect of lorlatinib. Three cholesterol lowering meds, each with their own job to do, working together to bring my cholesterol under control. This is important not just for me, but for the data collected on lorlatinib. If ROS1 lung cancer can someday be considered a chronic, managed disease, then the drugs to treat it have to be tolerated well by all body systems. And, of course, the drugs need to be designed so ROS1 cannot find a work around. Researchers are getting closer to this all the time.

Last week I sat in on a zoom meeting with Nuvalent, the company developing a drug to specifically target ROS1, not other drivers as well like others drugs used to treat ROS1. (Here are my unscientific thoughts if I followed it somewhat correctly.) Specifically targeting ROS1 means that it will be laser focused on just those cells, not affecting others along the way. With no attention anywhere else, ROS1 will not be able to mutate and escape. Also, I think with other things along the way not being affected, side effects will be less, and perhaps ROS1 lung cancer will be a chronic, managed disease. The Nuvalent drug for ROS1 has not yet been tested in humans. It will be in a phase 1 clinical trial within a few months. Only a few people in a few sites will be in this trial. Then, if dosing can be determined and all goes well, it will move on to a phase 2 trial, with many more people included. The team working on this is filled with heroes. They were told of a need that had real possibilities for successful treatment, and they are working as quickly as possible. The ROS1ders are encouraged, hopeful, and grateful.

These new, more effective and efficient treatment options are desperately needed because so many are running out of options. For some of the ROS1ders the drugs developed initially for ALK tend to work longterm. A few have been on crizotinib for several years (many years for the lung cancer world) , and a very few of us have been on lorlatinib for four or more years. But for many, ROS1 finds that way around and these patients go through treatment options quickly, not finding one or even a combination that works. This spring we’ve lost several ROS1ders, young people, healthy all before they developed cancer. The possibility of that promising drug is something to give hope to surviving ROS1ders and our families.

As for me, I continue to find joy in the everyday every day. I recommend this practice to anyone. It is soothing for the soul, especially when things are sad. Don’t let life pass by without taking time to enjoy the “little” things. Right now for me it’s watching wildlife, playing ball with Ruby Jean, planting the garden with Dan, and picking flowers, leaves, etc. to dry, laughing at goat antics, tripping over Rusty (always underfoot), and quiet evenings with Dan and the dachshunds.

Enjoy your summer! That’s my plan.

Be a ROS1der Superhero! https://ros1ders-inc.networkforgood.com

Promising Possibilities

Last night I was too excited to sleep, and I always sleep well, happily snoring the night away.

Here’s the backstory: The cancer I live with cannot be killed (until I die maybe, and then I hope it lives on in a research lab). That’s just how it is. But, as you’ve heard, my targeted therapy drug, the mighty Lady Lorlatinib, has kept it in check ever since my first targeted therapy Crizotinib let the cancer creep into my Central Nervous System, into the meninges of my brain. I am lucky to have a cancer that can be treated with a targeted therapy drug (a TKI). When I began Lorlatinib it was in clinical trial. Given that the cancer was in my brain lining, it was pretty much my only option, and I was very fortunate because not long before this someone with cancer in their meninges might not qualify for a clinical trial.

So, 3.5 years later Lorlatinib has been approved for a different “mutation” (ROS1 is really a gene fusion, but that’s too much for this story.), and it is still stomping on ROS 1, keeping things “stable”. The disconcerting fact of living with this cancer is that it is tricky and at some point it may (likely) change things up just enough to get out from under Lady Lorlatinib’s steel boot and go for a ride wherever it pleases throughout my body. And truly? There isn’t another Lady Lorlatinib just waiting for me, especially given that ROS1 is already in the brain meninges. There are other targeted therapy(TKI) drugs in trial, and chemo combinations being used for ROS1 that might be available, might buy us some more precious time. But no real Lady Lorlatinib.

The real story is below. Hope, possibilities, exciting enough to keep me awake. A future where this cancer may be treated as a chronic disease. Researchers dedicated to finding treatments for rare, yet treatable cancers. “My” oncologist, Dr. Pasi Janne, Director of Thoracic Oncology at Dana-Farber Cancer Institute, listed as a scientific advisor. A promising possibility, one that if needed, may be there to help me and certainly others to keep writing chapter after chapter in our life stories. Not tomorrow or maybe not even six months from now. Yet-promising possibilities! NUV-520 (Read about “her” under the heading Pipeline.) Need to click on word HOME first, I’ve discovered. Then, if on phone, scroll down. If on laptop, PIPELINE is at top.

Home

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.

Stable, inside and out!

Stable scans = great news!

When cancer joined our life, we knew things were never going to be the same or what we dreamed of for our old age together. Over the past four years we’ve built a new best life for ourselves, and have settled in to enjoy our time on earth, however it looks or long it lasts. We take each bump in stride, and have been very fortunate that there’s always been a way to pick ourselves up, dust off, and move on. Trying to stay healthy and well informed about health choices and needs is on the forefront, never taken for granted.

So when Coronavirus came around, we were as ready as we could possibly be. On March 5 we had my day at Dana Farber. On March 8 we did a comprehensive grocery trip, and then settled in a little more. In fact, I’ve not been inside any dwelling except my own since March 8. Dan has visited his dad, but has been inside no stores, etc. Thanks to full freezers and pantry, family, curbside, some online shopping, and “distance” outside visits we’ve thrived. My “go to” stores are now Merrill and Hinckley, Blue Hill Co-op, and Surry General store.

But of course when cancer lives with you and you’re in a clinical trial, oncology appointments must happen even if you feel you are doing well and think you’d know if there was progression. I was allowed to skip my six week labs because I’ve been stable for so long. Not so with my day of tests at 12 weeks. In my world twelve weeks between scans is a long time. (This trial began with every 3 weeks.)

But what about coronavirus? Dana-Farber is safe. But Boston isn’t safe, I watch the news. We aren’t really going to Boston, we’re going to Dana-Farber. Dana-Farber is safe. Dana-Farber is in Boston. And so it went for the two weeks leading up to the appointment. I talked with the trial nurse, who was working from home. I learned that after my tests there would be a phone appointment, a conference call. I learned that very strict guidelines were in place, and any appointments that could be postponed or done by Telehealth were not be conducted at DF. Mine were not to be postponed. (Doing all tests locally would not be easier or as safe, we concluded.) Then, I received three calls in the two days leading up to my appointments regarding COVID-19, asking me screening questions. So. Hmm. Huh. No more excuses. Not any sensible ones. We would do it all in a day trip. Dan was confident he could drive there, wait, and drive back safely.

So yesterday we went! Got there in record time – no traffic! Even though I felt unsafe, I do believe I was as safe as could be when at Dana-Farber. Only the patient may go in (with very few exceptions). This was a first for me. Masks are a must when you leave the car. Everyone is screened upon entering ( same questions as on the phone) the Yawkey lobby and given one of their masks. “Sneeze guards” are around every reception desk. ID is looked at, not touched. Parking tickets are not validated – free parking during this time. (Usually $12.00 for day when validated at appointment.) No clipboard with questions to fill out by pen, those are asked orally or prior to by phone. Waiting room chairs are spaced 6 feet apart. Everyone in the building wears a mask. Some techs wear full PPE. I went through my day. Elevator and hallway. Dana Building L1 Check-in 1. blood work and IV in. 2. CT questions and get nasty drink. Drink over 30 min period. 3. CT scans. 4. Brain MRI prep (across hall from CT) Put clothes in locker, put on hospital top, pants, socks. 5. Brain MRI, wearing my mask! (A big first.) Even the squeeze ball has a disposable cover now. Done, get dressed. 6. Elevator and walkway from Dana to Yawkey 10. 7. Check-in for EKG. Same COVID-19 screening. 8. Vitals taken, EKG done. 9. Elevator to Yawkey 2, pharmacy. Meds are ready! (That means labs were good.) No wait. 10. Elevator to P5 and car. 11. Sanitize phone, ID(only things I took) and shoes, change shirt. Homeward bound, record time! Dr. Janne and Nurse Dawn call shortly after we reach Maine. Scans look good! Labs are good too! See you in August, call if you need anything. And so it went. Lady Lorlatinib, my targeted therapy drug, continues to keep the beast controlled (34 months so far). Our tears are of relief and joy, and maybe a little fatigue. Mostly joy, thinking of a summer of gardening.

Boston residents were following safety guidelines. Everyone walking on the street wore a mask even. It seemed much safer than stopping for gas at a convenience store in Augusta. Dan was safe, used a disinfecting wipe, sanitized, and we didn’t go near the store. But people with no masks were streaming in and out one door, in each other’s face and space, handling the door and everything in the store, and … on and on. All I can say is that we have decided it is solely our responsibility to keep ourselves safe. As much as we hope others will follow the safety guidelines, we know many are not. We can be sad, frustrated, bewildered, even angry (not worth my energy) at their behavior, but that won’t keep us safe – we will. We must. We have more life to live.

We’ve decided that every day now, during the time of coronavirus, feels like Saturday. They aren’t Sunday, but they aren’t “work” days. So they’re all Saturday! Really though, I know that Monday – Friday our CDC Director, Dr. Shah, will give us the daily update at 2:00 PM. (I know I can read it on the CDC site earlier, but I feel his presentation is important for Mainers to see.) Every day I hope to hear that no Mainer has died. I am so saddened at the thought of anyone dying such a difficult death with no family there. And sad for their families. I cannot change that. I can only help the greater situation by keeping myself safe, and asking those I know to do the same. We do not want to have people die needlessly or to overwhelm our fragile health system. Avoiding outbreaks in nursing homes has to be our collective responsibility, doesn’t it?

Please. Stay safe. Wash your hands after going out or bringing things in. Wear your mask. Don’t touch your face, even if that mask is itchy. If not for you, then do it for the grocery clerks and others you come in contact with. Thank you. If I see you wearing your mask, I’ll be smiling under mine.

This week we had new friends at camp – a Baltimore Oriole and a cardinal. Tomorrow is Saturday! Isn’t every day, except Sunday? Sunday we will plant our garden, grateful that we’re together for another summer of finding joy in the everyday every day. Here, at camp with our two spoiled dachshunds and four funny goats. May you feel as blessed as I do. Please, always have hope.

Onward we go! All stable

Last week we did our day (We left home at 6:00 AM, drove to Boston, and reached our hotel at 8:00 PM.) of tests and appointments at Dana-Farber and the news is all good! The CT scans of my chest and abdomen are unchanged, the brain MRI is unchanged, the EKG was normal, the blood work showed that my additional cholesterol lowering medication is working. High (almost out of control) cholesterol is a medication side effect. Everything else in my blood work remarkably is still always in the normal range. So has ROS1 hopped in his speedster and departed? Nope. But he is currently still out of gas, stalled. Not moving, not growing. My hero, the Lovely Lady Lorlatinib is the real beast, in all the best ways. While she may not be so kind to my body, we’ve learned to get along. And she is strong, keeping her foot on little ROS1. Doing her job.

Me? I’m still playing, taking care of my mind and body, and finding joy in the everyday EVERY day, here in our winter home with Dan, our dachshunds and goats. Filled with gratitude as we near the fourth anniversary of my Stage IV lung cancer diagnosis. Looking forward to having the children, grandchildren, and Dan’s dad all together over the holidays. Making memories.

Thank you for all the prayers you say for me and the positive thoughts you send. I am grateful. Love to all, from our side of the mountain.

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

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this: