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.
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!
“Steadfastness in doing something despite difficulty.” That’s what living with stage IV lung cancer requires. “Where there’s a will, there’s a way” is how our dachshund Rusty lives his life. He has taught me much about the will to keep going. After multiple back incidents involving paralysis, back surgery, months of recovery, pain medications, he keeps on trying. Yes, lately at the age of 14, he sleeps more and moves around less, but he continues to enjoy life.
Yesterday was the perfect example of us finding a “work around” so we could have a grand adventure. Dan, Rusty, Ruby Jean, and I all climbed on the four wheeler for a mountain ride. Note I didn’t say “hopped” on the four wheeler, but that’s really okay. Ruby Jean helped Dan drive and Rusty laid across my lap in back of Dan. Now I can imagine friends and family trying to picture that scene! It was pretty funny. Up the mountain we went. Ruby Jean was so excited her little tail never stopped. Rusty just soaked it all in, not a bit nervous.
We traveled the fire road and woods roads up the mountain, across our “new to us” family land, behind Dan’s dad’s to our land we bought several years ago, to the back field of the “new” land to sit on a rock in a spot Dan has loved and dreamed of owning for his entire life, and a ride into the forest before heading back down the mountain. It was the best of adventures, one that Rusty would not have been able to do any other way, and I surely wouldn’t have all in one trip on a summer day. Perseverance, finding joy in the everyday.
When you see the photos of this adventure, note the freshly mown fields. Those were mown by Dan’s 88 years young dad. I’m guessing getting up on that tractor isn’t very easy, but the joy he has tending those fields! Perseverance: steadfastness in doing something despite difficulty.
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!
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.
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.
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.
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.
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)!
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.