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)

HOPE

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.

Forever

  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)!

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.

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

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