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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.

Forever

for all future time; for always
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)!

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

Normal?

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. https://ros1cancer.com 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. https://ros1ders-inc.networkforgood.com/projects/117609-corinne-pert-s-fundraiser

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.

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

Milestones

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 https://lcfamerica.org/lung-cancer-info/types-lung-cancer/ros1-positive-lung-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.

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.

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