Milestones and Goals

It’s been a while since I posted. First, my last scans and MRI were stable, and that is GREAT news. I’ve also passed a giant milestone – I’m on medicare with seemingly no major insurance glitches. Fingers crossed on that one! I’ve kept the same insurance company for my medicare advantage plan that I’ve been with for nearly 30 years. It was though quite the merry-go-round to make sure that everything was as I needed for it to be. When your insurance company covers a few hundred thousand dollars per year for your tests and treatment, you need it to be right. So, again, fingers crossed.

When I was first diagnosed and seemed to be dying, I was quite bummed that I wouldn’t live to be old. My life plan was to live to 100, and I happily announced middle age at 50. After all, our grandmother was just shy of 100 when she died. Cancer took the wind out of my sails on that one. But then came hope. Hope from the best of oncologists, hope from targeted therapy drugs developed by the best of researchers. Best because of their expertise, best because they care so much about their work, their patients.

But back to milestones. A granddaughter’s college graduation, two grandchildren’s elementary school graduations, with two more this year. Health events for family members that I’m glad I was around to help. A one year “cancerversary”, now SIX. Last year I passed a milestone I had feared, dreaded, and hoped for – I surpassed the age my dad was when he died of lung cancer. 64 years, four months. I was diagnosed at age 58 and 64 seemed almost unreachable. Treatment has improved so very much since 1994. I wish he had been able to benefit from today’s treatment.

Today was another milestone. Today, for the second time since my diagnosis I renewed my driver’s license. I hoped, but didn’t expect, to do so once again. I didn’t even mind saying that I was 30 pounds heavier, thanks to my Lady Lorlatinib, my targeted therapy drug with special side effects to prove she’s reaching my brain. I’m certain there’s so much more that this gift of time has given me, even with the isolation of COVID.

I’ve two personal goals, my every day resolutions. First, to keep my body, mind, and soul as healthy as I can. And secondly, to find joy in the every day every day. Happily ever after looks like what you make it, no matter how long it may be. Always have hope.

Soon Dan, the dachshunds, the goats, and I will be spending our summer at camp. The spring has been filled with trap and boat work for Dan, art play and the everyday for me, and lots of baseball and softball games to watch.

Sending hope to those fighting for their homeland and democracy in Ukraine. Hoping that everyone here and around the world has an awakened awareness of the importance of democracy.

Different companion, same results!

Last month our daughter accompanied me to my day of tests and appointments at Dana-Farber. One of our dogs is having some problems and we made the decision that Dan would stay home with the dogs. This gave me peace of mind, but was stressful for him. Not because of dog care or worrying about me traveling with our daughter (of course not!), but because he worries we won’t be together when I get news I need him there for. At least I think that’s why.

Everything went smoothly. My scans and MRI reports included the word UNCHANGED over and over. When you have Stage IV Lung cancer, and you’ve been “stable” for four years, unchanged is a remarkably wonderful word to see.

A change in my routine was no more “nasty drink” prior to chest, abdomen, and pelvic CT scans. Yippee!! Seriously. Yippee!! Evidently it has been determined that it is no longer necessary. Huh. I wonder how much of that stuff I’ve needlessly consumed. Oh well. Yippee! Seriously.

Boston was requiring masks when inside. The weather was very pleasant and we sat outside between appointments. Other than going to Dana-Farber, we stayed in our hotel room, reading and eating bon bons. No, no bon bons. We did have a fridge, keurig, microwave, and room service – it seemed safest. We had a nice visit together and an uneventful trip. Everything I hoped for. Thanks, Mandy, for being a great companion. And to Dan for staying home with the “children”.

Now we can settle in for winter, watching the birds (even cardinals!) and wildlife (especially a little porcupine), and enjoying the company of each other, the dogs, and the goats. Hopefully with boosters and masks, we will be able to spend time with family. I remain filled with hope for all cancer patients as each and every day advancements in research are bringing new treatments. Thank you to all who keep me in your thoughts and prayers, with hope for my future. I’ve heard people remark in other situations, “What do thoughts and prayers do? How does that help?” It does matter. It does help. Today I heard Kentucky Governor Andy Beshear describe the impact and importance of the outpouring of love they had received in the aftermath of the tornadoes. That is what the thoughts and prayers are. Love. Love to all.

Still “looks good!” (After all these years)


Good scans and MRI, cholesterol down to high normal for the first time since beginning with Lorlatinib, and all other blood work is fine!!! That is an amazing report for a stage IV lung cancer patient. I will continue to just deal with the scarring (fibrosis) in my lung caused by radiation. I can breathe well inside, even on humid days, and I’ll enjoy the less humid days all the more when able to be outside playing and working. Other side effects, while they affect me in ways that sometimes are distressing or painful, they are manageable and unchanged. I’m in great shape for the shape I’m in, and that’s just how I hope it stays!

One of the best things about this trip (the best next to the “good scans”) was that Dan could go in with me. The last time that happened was February. Patients only, unless a first visit, had been the rule due to COVID. It just felt so much better to have him with me. Just think about the people who had to receive devastating news with no one to be there for them. A phone’s hug or hand squeeze… Happy and relieved to have Dan with me.

Thank you for your continued positive energy and prayers. I continue to be filled with hope as I find joy in the everyday every day. The world has so much work to do on so many fronts. Compassion and kindness are “free” and something we can all contribute. May you find joy in your everyday.

See the light ahead?

Healthcare Access

Cancer is expensive. On my insurance portal today: “Total billed by providers Jan 01, 2021 to current: $241,036.34” No typo there. Two hundred forty-one thousand, thirty-six dollars and thirty-four cents. Six months. Cancer is expensive. Much of this is my targeted therapy drug. Without it little ROS1 would once again speed throughout my body. Most of this cost is paid by my insurance. This is not so for many.

I am one of the fortunate ones. I have health insurance. I know how to read claims, bills, etc. I know how to file an appeal. I am learning how to best advocate for myself in this domain. I am well enough to do so.

When we made the decision for me to stop working, it was so I could focus on my health full time. (Many keep working to try to keep up with expenses, keep their insurance.) I thought it was to keep my mind and body as fit as could be. And it is. But lately it is also spending way too much time dealing with healthcare billing, insurance benefits and claims, …

At Dana-Farber most of that is handled seamlessly (for me) between them and the insurance company. But that’s not the case with all providers.

Early in 2020 I was hospitalized. Even though it was our local hospital (or because it was), I saw a different hospitalist for each of the days I was there. Unbeknown to me, the hospitalist on my final day was new – his first day – so new that it totally messed up my insurance claim. After months and two appeals, bills from an unknown company, and a threatening letter from a collections agency, I sent a check to this unknown company representing this hospitalist. Right before the appeal was approved and a check was issued by the insurance company. So I called the billing company for the unknown company ,who evidently hires the hospitalist, to get my $ back. You can imagine how it went. After a long hold, I was told my check was received, but none other. I should wait a couple weeks and it should be processed by then. Nobody else to talk to. I got specific info from my insurance company, and still, nope, sorry, nobody in billing could help. It’s a call center, silly. There is no billing department to speak with.

Today I tried AGAIN! Nope, sorry, just your zero balance. So I called Northern Light (“local”) billing. Nope, no big credit waiting there. So, I’ve had good luck “chatting” with a live person at my insurance company. I got a nice, helpful person who could see that the check was issued, but not cashed. She tried to call the billing call center (I gave her the phone number) to get a correct address to reissue the check and of course there was high call volume. She’s going to work on it…

Everyone deserves access to the same level of health care.


  1. for all future time; for always
  2. continually

It was a beautiful, sunny day forty-six years ago this day, filled with love, promise, and hope for a wonderful future. We repeated the traditional vows to care for one another through all life’s highs and lows, continually, for all future time, for always. We have, by today’s grading system, “exceeded expectations” in societal terms. We knew we would. On that day my dad knew we would too. And my dad, well, he was always right:) The team named “Dan and Rin” has made such amazing memories together, and we will continue to do so forever, continually, for all future time, for always. Precious memories, more precious as we’ve continued to grow and understand, through so many life events, the fragility of life. Each and every day is a gift. Take time to unwrap that gift, and live and love in the present, today and forever. Happy anniversary to us, and to Tim and Jenny (who married on the date of our 28th anniversary)!


First I must say I’m again filled with gratitude after a day at Dana-Farber, ending with a phone appointment (on our way home) in which Dr. Janne said all is stable. And, I have finished my quarantine with no COVID. Relief.

There is NO NORMAL in Stage IV cancer. You may say that is my opinion or that I’m just having a rough day. NO. We CANNOT, we MUST NOT normalize this. Today I am filled with sadness for the family of a young mother, one of our much respected and greatly loved ROS1der co-founders. (Just a year ago a beautiful young friend died of inflammatory breast cancer.) We cannot accept that this is the NORMAL way this disease has to be. It is the current reality. This superwoman lived life fully with lung cancer for eight years. She did what so many ROS1 patients do by beginning on one targeted therapy drug, then moving to the next and the next and the next (likely some/all in clinical trial) as the disease progressed or returned in her body. With fewer than a handful of others with ROS1 cancer, she co-founded the ROS1ders. Extraordinary. Today I honored Tori by donating to the ROS1ders’ research fund. You can join me, helping to find treatments that can turn this disease into a manageable one, so other young ROS1der parents may live longer, better.

The ROS1der goal of accelerating research is being realized, but the research is not outpacing the need for new treatments to deal with a beast that finds ways to work around each of the current treatments. And, so far it seems no targeted therapy has been developed that holds the beast at bay “forever”. (I remember when my first Dana-Farber oncologist told us I was ROS1+, that it could be treated (not cured, but treated) with a targeted therapy drug. “You mean it can stop it forever?” “No, not forever.” She went on to explain how that nasty little ROS1 eventually finds a work around.) So, not our NORMAL, but our reality.

We’ve all experienced an abnormal year since coronavirus became part of our reality. It hasn’t been a “new normal”. We’ve all known it was not NORMAL. We have coped. Some by pretending things are normal, some by facing reality. But, no one can have truly just felt like this was normal.

I am grateful for the researchers, oncologists, our family, and the prayers, well wishes, and hope of so many. It’s all kept me going for the past five years. I cannot/should not/must not NORMALize (Conforming to a standard; usual, typical, or expected) living or dying with cancer. As wonderful as it is to be well enough to find joy in the everyday every day, it is not NORMAL to take a medication (without which you likely would die within months) that causes you to need not only one, not two, but three cholesterol lowering drugs, that causes painful neuropathy in your extremities, that causes you to gain weight uncontrollably. (And those are the “manageable” side effects. Some are not tolerable, forcing discontinuation of a drug. Another reality and fear faced by cancer patients.) I know what the alternative is to my present reality. Kind of like the alternative to getting old. I’m not complaining, I understand. I’d love to live to be “old”. I hope to see the day when I declare myself old.

Yesterday I had outside visits with my sister, then my daughter and a granddaughter. Today we were visited (outside) by our son and another granddaughter. Today we went for an almost spring walk. Our plan is to get back into this routine. I picked some pussy willow twigs to add to my stick bouquet. All things I love. All things that fill my soul with joy. Everyday things. Normal? Nope, not normal, but finding joy in life despite the realities of the details.

Today, please join me in sending thoughts of strength and peace to Tori’s husband and three children. Please join me in sending thoughts of hope to all the young ROS1ders facing the fears, the realities, the costs of living with stage IV lung cancer. (I cannot imagine doing this as a young parent.) Support lung cancer research by writing to your representatives and donating if you can.

My next appointment (if all goes well) at Dana-Farber is in late May. I hope we will have our vaccinations by then. Stay safe. Love to all.


Today I reach a momentous milestone in this cancer journey. FIVE, yup five, years since we heard the words, “You have a mass in your left lung.” Some people call each new year reached a cancerversary. I celebrate every day. But, this five year mark stands out statistically when you research Stage IV lung cancer. So, it is an important milestone. (Don’t rely on those stats though, thanks to research and new treatments they’re outdated before they’re published.)

Even though that five year marker is a momentous milestone generally in any cancer journey, it has a different meaning, I think, to those of us with metastatic cancer being treated with a TKI. Since my diagnosis the first medication I was on has been FDA approved for first line treatment of ROS1+cancer, and the drug I am on currently (lorlatinib) has not yet been approved for ROS1, but has for a different gene rearrangement/fusion, so maybe soon. And there are now other drugs in clinical trial. So far each time that I’ve needed treatment (initially, and then when little Ros hopped in his speedster, traveled to, and settled in, my brain), it’s been there for me. The longer I live, the more treatment opportunities there may be when little Ros sneaks by Lady Lorlatinib. It amazes me that the testing and treatments were (and are being) developed for something that is in only 1-2% of lung cancer patients. Especially since lung cancer research is so underfunded compared to other cancers less prevalent. I am grateful for those who care enough to do this work. They and their work are what makes this day momentous.

For the first couple of years or more I didn’t speak or think in the long term (no “next summer, this fall, etc.”) Even though I was filled with hope, and felt very lucky to have ROS1 identified and a drug available to treat it, life had changed so suddenly, and continued to, that the present was too uncertain to think about future possibilities. And then I reached my first goal I set to be here for: to see our eldest granddaughter graduate from college and become a nurse. (She had just finished her first semester when I was diagnosed.) It was about the time of her graduation that I realized I had begun to look to the future, thinking about next year’s garden, next Christmas, the next outing. And now I think, “Why not make plans?” I still don’t know if I’ll be here, but no one really does. And life around us moves on anyway. Now I’ve seen two grandchildren graduate from elementary school (one is driving!), and have two more elementary school graduations to look forward to next year. I’ve seen seasons of gardens, summer with grandchildren, and hundreds of sunrises. I nursed my Rusty boy (dachshund) after a surgery one summer and then back from paralysis last year. I’ve numerous adventures “because now we can”. Our goats we got that first summer (after diagnosis) as kids are over four years old, our puppy is five. And now we’ve sheltered in place for ten months, trying to keep us and our loved ones safe in the pandemic. Seems incredible.

On this day I continue to feel filled with hope, peace, and gratitude. I live well, with cancer. I do not fight or battle it, I leave that part of the work to the rest of my team (medication, researchers, doctors). Yes, it’s true my med has some unpleasant side effects, and has made me a little more wacky and a little (quite?) chubby. I seem not to be able to do much about either of the latter two, so I make lots of fun things, staying busy busy busy, and I bought bigger, stretchy clothes. We’ve embraced the life we have, happy to have one another, our family, our goats and dachshunds, our home and camp. I’ve plenty of crafting supplies and ideas. I can watch the birds and craft all day. It is easy for me to find joy in the everyday every day. I am so fortunate.

My next goal is to be able to have a fun family cookout once we all are vaccinated. So far our family has been able to stay safe. I hope that for everyone reading this. Stay home if you can. Wear your mask and distance if you must go out.

The world is in such disarray, but I have great hope for our future. May we take the positive pieces of all that’s happened and work toward the future we want for our grandchildren and beyond. I hope you can find some joy in your day today. Thank you for your hopes, prayers, and thoughts. Love to all.

Interview with Korin Miller, yahoo! Life

A few months ago Deb Violette, of Free ME from Lung Cancer, connected me with Korin Miller of Yahoo Life for an interview. Imagine my surprise when Miranda Goff of the GO2 Foundation sent me an email to say my story was trending on Yahoo. I didn’t know it had been published. Here it is: Interview

Health Update

Good news, and carry on! On November 5 we made a day trip to Dana-Farber. In this time of COVID-19 we continue to keep ourselves safe. A long day for sure, but we limited our exposure to others with two stops for gas (yup, disinfected hands and card) and the numerous tests and appointment at Dana-Farber. Once again Dan wasn’t allowed to join me, but that gave him some napping time in the car.

From check in to check out I interacted with approximately fourteen individuals. In addition, I was on 7 elevators, most empty, but a couple with four people. I sat in three different waiting rooms, distanced. That’s a lot of exposure for someone who only visits with others outside and goes inside nowhere besides home and health related. My oncologist shared that their contact tracing has not found one case of transmission from a DF provider to a patient. They are VERY careful.

My scans and MRI were stable. The cancer is not visible in my lung, but the effects of fibrosis (cause by radiation) are evident (and bothersome to me). The cancer in my brain and liver is stable, unchanged since Lady Lorlatinib came riding in to take charge.

I am no longer in a study (clinical trial). Lorlatinib has been FDA approved, not for ROS1+, but for ALK, and while I didn’t hear exactly why this study is closing at year’s end, it is. (Some last years past approval) That means no more “free” drug as part of the study. EEEK!! For a bit I was quite worried – would my insurance cover the drug under compassionate use, and if so what kind of co-pay would there be? Well, fear not. The folks at Dana-Farber worked their magic and I’m receiving Lorbrena (brand name, different color too) with NO CO-PAY. Not everyone in the trial had the stars align quite so perfectly. It is sad that healthcare, medications, and insurance are not readily accessible to everyone. I just don’t understand why healthcare is not a human right in a country such as ours.

So my personal plan that I’ve worked with since I first went to Dana-Farber continues – Lorbrena (now) and my medical team work to keep the beast under control, and I work to keep my body, mind, and soul healthy. I was reminded of the nasty side effects of the medication when reading and signing the new material for the specialty pharmacy. (Not that I’m able to forget or ignore some.) I seem to have most of them, but not the life-threatening heart one. While mighty unpleasant, all are tolerable and manageable at this point. May Lady Lorbrena stay strong. I know I can.

Positive thoughts and prayers are appreciated for two of my lung cancer acquaintances. First, my lung cancer buddy R. (with whom I communicate regularly) went for a COVID test today with the hope that she will be cleared for a much needed procedure Friday. And also a young man with stage IV lung cancer that I learned about in our of my junk journal groups. Rob is being treated at MD Anderson in Houston, TX. Please, as they and their families have asked, keep them in your thoughts and prayers as they travel this lung cancer journey.

Even in these difficult times, I understand how very blessed I am. We have everything we need in our family, each other, our dachshunds and goats, a warm home with plenty of firewood for whatever winter brings. We even dug carrots and potatoes yesterday, still harvesting in mid November!

While sheltering at home, I’ll be finding joy in the everyday every day – watching the birds, distance visiting, playing with the dachshunds and goats, crafting, and enjoying having Dan home for the winter.

Stay safe, my friends. Wear your mask if you must go out or even if you invite someone in, wash your hands frequently, watch your distance, and avoid places with lots of people. A vaccination will be ready in a few months. Let’s all get there. Be well, and thank you for caring.

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.





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NSCLC Stage IV Squamous Journey (Lung Cancer)

Faith, Family & Friends

Living with stage IV lung cancer - By Lysa Buonanno

The Frugal Crafter Blog

Groovy craft projects, crafty recipes and other artsy stuff.


The Official Blog of Lung Cancer Social Media

Forest Wolf Programs

Build your relationship to Nature with Forest Wolf as your guide.

Roads End Naturalist

Educating myself and others about the natural world as I wander and ponder at road's end.


Keeping you abreast of Gwen's lungs one post at a time.


Life with advanced lung cancer: tips, tricks, insights, and inspirations

Naturally Curious with Mary Holland

An online resource based on the award-winning nature guide -


Just another site

Gray Connections

Perspectives on Lung Cancer, Research Advocacy, and Other Stuff

life and breath: outliving lung cancer

for the terminally optimistic

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