clinical trial – polepole ~ breathe

Science Research Matters

See you in September. What? Wait a minute! First, if you lived in a certain era, it’s difficult to not start singing the song. But, for me yesterday, this was both a welcome and a scary surprise.

Yesterday, we had another very long day going to Boston and back. My chauffeur was tested by wind, rain, fog, and darkness, but we had a very positive outcome with stable disease once again. Still, having been scheduled for scans and brain MRI every three months for many years (starting with every three weeks when first on lorlatinib), I was surprised when Dr. Janne suggested 6 months for my next appointment. (He quickly said we could try 5 first.) Of course it is a welcomed step. It means the Lady Lorlatinib has safely kept me from progression long enough that we might let our guard (not hers though) down a bit. It means cutting our Boston trips in half. That said, it is also scary. ROS1 is an aggressive cancer if not stomped on as Lady Lorlatinib, my miracle targeted therapy drug, does so effectively. Being checked more frequently means a better chance of catching an escape of that crazy little ROS1 before it attacks me here, there, and everywhere. He is vicious. I know. I remember. And, Dr. Janne and others have said not to count on being able to know when it’s opened the door, racing around in me like a madman. Yes, of course eventually I would have symptoms, but not perhaps as soon as one might expect or hope for. All that being said, I must be brave. I trust Dr. Janne. And, it is nice to hope for an uninterrupted summer at camp. Thoughts, prayers, fingers crossed, positive vibes – I’ll take them all.

Without SCIENCE RESEARCH I would not be here. People might say, “Oh you don’t know that.” Yes, I know it. If you are thinking, “Wait, don’t you believe you should thank God for answering our prayers, and that is why you are here?” If God’s grace is why I am here, then of course science research must be part of God’s plan. And every minute of every day I am so very grateful and try to live my life in a way that demonstrates that gratitude.

You know my story of clinical trials in which scientists study a drug’s effectiveness treating a specific disease or in my case a specific gene fusion found in only 1% of lung cancer patients. It takes years of research, brilliant research doctors, programs in which studies take place, equipment and staff to support this research, and funding to create these drugs for cancer (and of course other diseases). Cancer does not discriminate. That is one of the hardest things about our long day at Dana-Farber, seeing people from the very young to the very old who come there for their hope. People who may look fairly healthy, people who look very ill, all hoping for their miracle. Their miracle that may be in a clinical trial right now. A clinical trial that may be in jeopardy because of the Trump administration’s withdrawal of funding. (This has already happened at NIH. At Dana-Farber, Dr. Janne said they do not yet know the full impact of this, they’re trying to figure this out.) Many of those same patients may receive their health care through Medicaid or Medicare, also on the Republican/Trump/Musk chopping block. While it may seem like this is not about you, it is. If you think you don’t benefit from medical research or these forms of healthcare, I’m thinking you should think again. But, after that if you still don’t, think about your family, friends, and neighbors. Some of them certainly do. Please don’t ignore this crisis we’re in until it directly hurts you. Become informed, get involved, call your Senators and members of Congress.

If all goes well, Dan, Ruby Jean, the goats, and I will now simply enjoy the winter and spring here on our side of the mountain. Maybe I’ll even finish the “braid-in” rug I’ve worked on for a while now. (It’s curling and Ruby Jean may claim it for a bed.) Lobster gear will be worked on in the field, the boats will be readied for another season of fishing, and before you know it the boats and traps will be in the ocean, and we will be planting our garden at camp. Thank you for staying with us on this cancer journey, and thank you for your well wishes, positive vibes, love, and prayers. We feel blessed and are filled with gratitude.

Nine years +!

Last month was my ninth “cancerversary”. I was diagnosed with stage IV lung cancer in January 2016. But it was in February 2016 that I was rescued from dying. If you think I’m exaggerating, ask Dan. It was then we found our place of hope in Dana-Farber Cancer Institute and the incredible doctors, nurses, technicians, and staff who work there. There just aren’t enough or the right words to express our deep gratitude and appreciation for not only the excellent treatment, but for the way they truly care for patients.

In my years at Dana-Farber, I’ve only had two oncologists (and a radiation oncologist) and two nurse practitioners. Professionals stay at Dana-Farber, it must be a good place to work too. Dr. Gandhi was our rock when I was first diagnosed, and after she moved on (she’s in a different department) Dr. Janne has been my oncologist. He is always just what we need when we need it, be it the bearer of good or difficult news. A truly outstanding human being in addition to being a brilliant researcher, professor, and oncologist.

Since that first x-ray that showed a mass in my left lung hilum (contains major bronchi, pulmonary vessels, and lymph nodes), I’ve had one bronchoscopy, one PET scan, one liver biopsy, one spinal tap (when the cancer found my CNS), one heart CT (to see what the radiation and high cholesterol has done), one radiation mapping session (resulting in 4 tattoos!), 15 rounds of radiation (during which we stayed at the Hope Lodge in Worcester, MA), 22 ECGs (done during the lorlatinib clinical trial), at least 47 blood draws, 47 CT scans (chest, abdomen, pelvis all at the same time), 40 brain MRIs, and approximately 60 oncology appointments (went frequently at the start of the trial, several with radiation oncologist). That’s a lot of trips from Blue Hill to Boston. Dan has been my constant companion; driving, waiting patiently outside testing rooms (or in the car during COVID), and being there for my appointments. Other family members have joined us, or helped to care for things at home.

I started crizotinib as my first treatment. After 16 months, when the cancer found my brain meninges, I began lorlatinib. It reduced the cancer by 80% quickly, and I remain stable on it today. The drugs have some nasty side effects (but the alternative isn’t really one is it?) and there are other medications, ways of eating, and self care that help. As I say when asked, “I’m doing well, all things considered!”

There are at least two other drugs that could be available to me if that rotten little ROS1 finds a work around. I am concerned that they may not be if this administration takes funding away permanently for cancer research (in my case a rare disease, less than 1% of lung cancer patients have ROS1+ cancer). Fingers crossed, good wishes, hopes, prayers – however you choose to support me (and everyone with this and other diseases), all are welcome! Thank you to those who have supported me over these nine years. I am an outlier on this drug, but still I hope for many more years.

This winter we’ve stayed cozy with the wood stove warming our home on our side of the mountain. Ruby Jean, our single little dachshund, has adjusted to being an only child, and has gotten a little chubby again with no chippie watching to do outside. The goats have grown thick, fuzzy coats and they too are cozy in their barn. And soon spring will be here and the goats will be entertained by Dan and Tim working on their lobster traps and their boats in the field, and Ruby Jean and I will be looking forward to getting to camp.

That’s my ninth cancerversary update! We go back to Boston March 6, having postponed it a month. I will post an update then. I hope that even in these difficult times you are able to find a little joy in the everyday every day. Try it, it surely helps me.

Goals and Milestones

First I will say my scans again show stable disease. Hurrah! I am feeling grateful and blessed. In another post I will speak to this further and describe the roller coaster known as side effects. But today is a day to celebrate yet another goal met, milestone reached.

In August of 2017 I was just a few weeks into my relationship with Lady Lorlatinib. In May it was confirmed that yes the cancer had managed to sneak past Queen Crizotinib while she was sleeping and it had reached my brain meninges. I began the Lorlatinib clinical trial in early July and we were traveling to Boston every three weeks. The early side effects were horrendous, but the drug immediately began working.

During this time we continued our modified version of Camp Gramma. I remember the excitement leading up to the total eclipse that month (Aug. 2017). We bought our glasses, nearly wore them out, and hoped for sun on THE day. I cannot describe how very thrilling it was for me to watch the four campers and their cousin Jake on that beautiful summer day as they turned their faces to the sky in awe of the magnitude of the moment. I was grateful then and still today that we experienced that and so much more in our Camp Gramma days.

Shortly after that day I saw a Facebook event post about the April 8, 2024 total solar eclipse. Laughingly I hit “going”, knowing the odds and statistics were against me, but also feeling that I really had so many things to live for that I didn’t see how I could take time to die. And then I began setting more and more goals, reaching milestones, and making it a daily practice to be grateful and to find joy in the everyday every day. Every once in a while that event would pop up, reminding me of the importance of staying filled with hope.

Today is THE day! While the rest of the path of the eclipse may be shrouded in clouds, the skies in Maine (after some very gloomy weather) are clear. I am not going to that event in Millinocket, preferring a quieter viewing. This afternoon Dan, one of the campers, and our daughter will be watching the eclipse in our blueberry field on our side of the mountain. How very wonderful is that!

Thank you for all your positive thoughts and energy, your prayers, your support in so many ways. Each day my appreciation for the gift of time and life deepens. Finding joy in the everyday every day with Dan, our dachshunds, and our goats on the side of the mountain.

Cancerversary Week: Still doing well, All Things Considered

The past week was my Cancerversary Week or maybe this month is my Cancerversary Month. At this stage in the game of life or cancer journey, this is definitely cause for celebration. Eight year with stage IV lung cancer is definitely remarkable. Thanks to two targeted therapy drugs, thoracic oncology experts at https://www.dana-farber.org, research scientists, the hard work of my family (Dan has made at least 80 trips to Boston and does whatever needs to be done without complaint. My sister has done so much for us from the beginning, and our children have taken care of things at home) and the hopes and prayers of many, I remain “stable” with the Lady Lorlatinib holding her high heel firmly on little ROS1+.

Before I recall the journey we’ve been on, I must express my gratefulness and a deeper gratitude for this gift of time. Together Dan and I have had so many more wonderful experiences to enjoy together, including our grandchildren’s graduations and sport events galore.We’ve been able to enjoy our time at camp watching the sunrise, the sea life, and our garden. And, of course, time with family, including our pet children. My appreciation for all life has to offer in everyday, simple ways has grown as I’ve found joy in the everyday every day. Has it all been blue skies and calm seas? Of course not. But what a gift that I could be here and well enough to help when times were and are tough.

When I made the decision, in May 2017 after the cancer found my meninges, to give up a piece of my life and stop teaching, it was because it was evident that keeping my body and mind as fit as possible was the only way I could survive what I would go through as a stage IV lung cancer patient with cancer here, there, and not quite everywhere in my body. I was about enroll in a clinical trial, requiring frequent trips to Boston. We had already been through a lot. Now, looking back over the eight years, having had radiation, biopsies, spinal taps, over 70 oncology appointments, 50+ blood draws, more than 40 CT scans of my chest/abdomen and sometimes pelvis, at least 35 brain MRIs, numerous ECGs, and medication side effects, I know it was the correct decision for my body. Staying alive to hopefully thrive was (and is) the priority.

EIGHT YEARS ago on Sunday, Jan. 3, 2016 Dan took me to a walk-in clinic because my undiagnosed cough cough had turned into “Now I can’t breathe.” (We were staying at camp and I couldn’t walk up our small hill without stopping to rest.) The NP at the urgent care was the first person to do a chest x-ray. (I had been to my PCP numerous times since early October, my chiropractor, the ER. Everyone thought it was linked to the stress from the house fire.) I could tell when she returned from seeing the x-ray that she was concerned and really wanted to help me breathe better. She did a nebulizer treatment, said that a radiologist would look at my x-ray and send results to my PCP. The treatment did little to help, but I sensed that she was on to something. The next day I received a call from my PCP (nothing happens the next day where we live). There was something seen in my chest x-ray that required I have a CT scan Wednesday morning. Holy smoly! That’s quick. Something? Like what kind of something? I had the scan on Wednesday and an appointment with the PCP was scheduled for Thursday AM.

On Thursday, January 7, Dan and I waited for the doctor to come in. We really already knew what to expect, but were holding on to the bit of hope not knowing the details provided to us. This lady was not good at hiding her emotions when she came in. Dan and I didn’t even have to hear what she said to know what was wrong. A mass in the left lung hilum. (The left hilum lies below the arch of the aorta and anterior to the descending aorta. The left main bronchus lies at the most posterior aspect of the hilum, with the left superior pulmonary vein located anteriorly and the left inferior pulmonary vein occupying the inferior portion of the hilum. The left pulmonary artery is anterosuperior to the left main bronchus. Pulmonary veins always lie anteroinferior to the pulmonary artery. Radiopaedia.org) ”Could it be anything other than cancer?” ”Not really, I’m sorry.” It was then that Dan and I knew, like we had always said, that as soon as we possibly could, we would go to Dana-Farber Cancer Institute. But first an actual diagnosis was needed. The next weeks included a consultation with a pulmonologist who seemed to not believe I was a nonsmoker, the bronchoscopy to remove a piece of the tumor to test, and a PET scan (whole body except head) to see where it might have spread. While waiting for results my research led to making an appointment at Brigham and Women’s thoracic department. They gave me an appointment quickly, Jan. 27, 2016.

In the meantime my diagnosis was confirmed. From Brigham I was sent that very day to Dana-Farber. There we met the first of many angels in the form of expert thoracic oncologists and their teams. Dr. Leena Ghandi. She decided to do radiation as palliative care as my breathing was impaired, my heart was racing, and I had a cough that was coughing up what I decided was pieces of me. The hope was to relieve my symptoms while testing was conducted. I was mapped, tattooed, and a cast made. (I also had a liver biopsy Feb.2 to determine that the lung cancer had traveled to my liver. It was assumed the place in my colon was also the same. A stage IV lung cancer confirmation.) The next days were crazy for us as we tried to keep me alive long enough to get me help. Nada stayed with us those first few days to take notes and help us process what was being said. Then once radiation was set, Dan and I stayed at a Hope House in Worcester, drove to Dana-Farber every morning, and then came home (to camp) weekends. In the midst of the radiation treatments (every week day for three weeks) that were not shrinking the tumor but causing the typical side effects, the test results came back.

It was just like we had won the lottery! The thoracic oncologist, Dr. Ghandi, and the radiation oncologist were beside themselves with joy. I was ROS1+, young and healthy (so said Dr. Ghandi) and there was a targeted therapy drug that had shown success in treating that cancer. I would take a pill every day, and if it worked the tumors would be reduced quite quickly. ”You mean I can take it forever?” ”Well, probably not forever. The cancer usually finds a work around. But by then there should be a next treatment.”

March 2, 2016 (after working out how to get the med) I took my first crizotinib. Up it came. With anti-nausea meds (3 at one point), it stayed down and Queen Crizotinib worked her magic. Within days I was feeling so much more human. I began to breathe more easily, and gain some of my weight and strength back. In April we moved into our newly renovated home. By summer, with steroids on board to fight the fibrosis caused by radiation, I was ready to do Camp Gramma (a modified version). That’s when we got our naughty Dottie and sweet Matilda. (Never did I think I would outlive them.)

Things settled into what people call the “new normal”. There is nothing normal about it and I don’t feel like it should be normalized. I call this our life now and the time before cancer our other life. But yes, things moved forward in a more even, routine way. Then in early March 2017 I started have odd headaches, unlike any I’d had before. At that time, because I didn’t have cancer in my brain, MRIs were at 6 months. A brain MRI was scheduled for my March day of tests and appointments. By that time I had a different oncologist, Dr. Janne, Director of Thoracic Oncology at Dana-Farber. The brain MRI showed something a tiny bit suspicious. The CT scans of my chest/abdomen were still stable. I would have another MRI in May, but call if the headaches worsened. In May it was determined that that nasty little ROS1 had driven through a red light, crossed the blood-brain barrier, and settled in the lining of my brain (meninges). While it was scary, and I regretted googling what that might mean, we were filled with hope because of the people at Dana-Farber. Yes, Dr. Ghandi had been right. Crizotinib had protected me well (and still was mostly) and carried me far enough to give researchers time to create another drug that may target ROS1. Designed to target ALK+, there was a clinical accepting ROS1+ patients. After a spinal tap determined the cancer had not yet spread further throughout my central nervous system, I began the process of being accepted to the trial. Once everything was completed (including a washout period), I began lorlatinib in July 2017. It’s side effects are unpleasant, really unpleasant. But, bearable and manageable. It began reducing the brain cancer immediately, stabilizing by late August, even with a dosage reduction due to neuropathy. I have remained on it since. I am a long timer now. And, thanks to Lady Lorlatinib pinning down little ROS1 with her sparkly red high heels, this gift of time has meant that, yes, there are new drugs in trials that show hope for controlling ROS1+. Hope. Hope for me, hope for all cancer patients. Hope that one day, not so long from now cancer will be a managed, chronic disease. Not yet a cure perhaps, but hope for life.

So there it is, the Reader’s Digest Condensed version (for those old enough to get that reference) of my cancer journey so far. My blog posts provide more details about what living well with stage IV cancer can look like. My best advice for anyone with a cancer diagnosis is FIND AN EXPERT, someone who treats patients with your cancer, preferably at a cancer treatment center/hospital. Then make sure there is biomarker testing done, even if your insurance says no to it. Those two things are the reasons I did not die in the spring of 2016. Look at all the joy I’ve had with this gift of time and believe me. It is worth the “inconvenience” and the expense to do those two things. And, try to stay hopeful. Hope and inner strength will help you to find joy in the simplest of everyday things every day as you face the challenges ahead.

When I reached 50 I stated I was middle-aged and would have the goal to live to be 100. When I was diagnosed at 58, I set much closer goals and milestones. The next family event often. Then I passed my dad’s age that he was when he died of lung cancer (no, mine is not hereditary). And then I reached medicare age. (I was not excited about figuring that out with my health.) And now? One moment, one day at a time. Make plans for the future and hope. Always have hope. My best wishes and hopes to you all is for your year will be filled with moments of joy, good health, and peace. Love to all. Finding joy in the everyday every day in our winter home on the side of the mountain.

Doing well, all things considered!

When “random” people ask,”How are you today?”, I often answer, “Doing well all things considered.” This gives them an opportunity to ask more, and maybe I get to do a PSA about the risks of having lungs.

I am doing remarkably well, all things considered. It has been a busy, happy summer watching (mostly from afar) our grandchildren and their exciting “one in a lifetime” events and accomplishments, and seeing the sun rise each and every morning. Our garden is finally producing well, and the dogs, goats and we are enjoying time at the Salt Pond. I have a new volunteering opportunity at Critterville Wildlife Rehabilitation , and a weekly art play date to enjoy.

So why “all things considered”? Why write this post? Well, never miss an opportunity to educate others about lung cancer risks for anyone with lungs. ANYONE. And, a jarring reminder. A screen in my echeck-in at Dana Farber.

I know how blessed I am to be alive and even more so to be able to do the things I do. Life and quality of life are gifts we should never take for granted. Never. Gratitude and hope are so important. Today, I think of how very much I have experienced in the past 7 1/2 years. Today I also think about a tiny baby having his first of a few heart surgeries 17 years ago. Today our heart hero grandson, one of my greatest heroes, boarded a plane to travel to play in the American Legion World Series. Blessed and grateful. Thank you to all that has carried me to this time – the Lady Lorlatinib (3 pills taken daily), research and oncology experts, and the love, prayers, and thoughts of so many. Thank you, thank you for giving me so much hope, and so much to hope for. Nothing and no one is taken for granted. With each sunrise I am filled with gratitude and hope, ready to find joy in the everyday every day. May you find the same.

That “all things considered” is something I live well with. Even though I’ve plenty of daily reminders with numerous side effects, perhaps a little “jarring” reminder is a healthy thing. Here’s the photo.

ROS1der Research

Dear Friends and Family,
The ROS1ders set a research fundraising goal for this month in honor of Lung Cancer Awareness month. I hope you can help us reach it. $10.00 is what I’m asking you to contribute. Four years ago my cough-cough led to a Stage IV lung cancer diagnosis (Jan. 2016). You know my story. Since then I’ve been on two targeted therapy drugs for ROS1 cancer. Neither FDA approved when I started them. Currently I am in a clinical trial. With each new drug the research scientists are learning more and more about the response to and of the ROS1 fusion. The ROS1ders are donating tumor tissue and more to this research. For me, there is possibly one more drug in trial when ROS1 finds a work-around to my current drug. For others there isn’t yet another drug.

For you scientists in my “family”, here’s some information on the research. ROS1 PDX Study

Here’s what I’m asking of you – $10.00 If every one of my blog readers and facebook friends and family gave $10. to this research I’d have made a great contribution. I ask this as much for the young moms and dads in our ROS1der group as for myself. Sure, I’d love to stay around to watch the grandkids grow and to get to grow old with Dan is a dream I once took for granted. But there are young people in our group who need to live long enough to see this cancer treated as a managed chronic illness so they can just experience life.

So, $10.00. Please. Thank you. Thank you for this and all your love, support, well wishes and prayers. Thank you for reading this and every post. Here’s the link to my fundraising page. Corinne’s ROS1 page

My cancer journey so far (written for ROS1der Feature Friday)

On Christmas Day 2012 Dan, my husband, and I were standing on top of Mt Kilimanjaro. April 2015 we spent a few days backcountry backpacking in the Grand Canyon, hiking down and back up with 30 lb. packs. By November 2015 I couldn’t go up the stairs without huffing and puffing, and I had a nagging cough. My PCP had put my symptoms (fatigue, headaches, the cough) down to stress as we’d experienced a house fire in August 2015. Guess again. I found myself taking a medical leave from teaching in November 2015. On Sunday, January 3, 2016 Dan took me to a walk-in clinic because I couldn’t breathe well. The FNP saved my life by doing an x-ray. How simple was that.

After a bronchoscopy biopsy and a PET scan in Maine, I self-referred to Brigham and Women’s and Dana-Farber Cancer Institute in Boston. They immediately did radiation as palliative care, trying (unsuccessfully) to reduce the tumor, and a liver biopsy to ascertain that the lung cancer had spread to my liver (and colon). Testing for a gene alteration was done despite initial insurance denial. Dana-Farber Cancer Institute is very adept at patient advocacy. My DFCI doctor was so excited to give me the news that the cancer was ROS1+ and there was a targeted therapy drug to treat it. Hope! She said I’d do well in treatment because I was young and healthy! (I was 58 and dying.:) Something she said that day seared an image in my mind of nasty little ROs1 driving his speedster throughout my body and the TKI choking off the fuel. Dana-Farber is a place of hope, caring, and expertise. While researching ROS1 I found another place of great hope, caring, and expertise – the ROS1der website and FB group. I am so very grateful for this forum.

I began taking crizotinib March 2, 2016. After finding the right combination of anti-nausea meds and a good supplier of Imodium, I tolerated it well. Within a week I was breathing easily. While never NED, everything was greatly reduced and remained stable. By summer I was swimming and exploring with our grandchildren at our camp. My scans were 8 weeks apart.

In March 2017 I began having odd headaches. A brain MRI determined that ROS1 had evaded the hero crizotinib, crashing through the barrier and entered the lining of my brain. (Leptomeningeal carcinomatosis, shouldn’t have researched that one. The statistics available are outdated.) Again DFCI offered hope. I qualified for a clinical trial for lorlatinib, a TKI that does penetrate the blood brain barrier. I stayed on crizotinib until one week before beginning lorlatinib in July 2017. I gave up teaching to make keeping my body strong and healthy my priority. Within weeks the cancer seen in my meninges was reduced by 80%, everything else remains stable. My dosage was reduced early on due to painful neuropathy. I now have a brain MRI, CT scans, labs, and appointment once every 12 weeks, with labs at 6 weeks. Twenty-nine months so far!

My days are filled finding joy in the everyday every day. In May I reached the first goal I set at diagnosis, attending my granddaughter’s college graduation. I recently hiked (slow-walked) a small mountain. I try to tell anyone willing to listen about the prevalence of lung cancer and the importance of testing once diagnosed. I write to local papers, and to local, state, and national officials. My family participates in the Free ME from Lung Cancer annual 5K. I serve on a patient and family advisory board of the Maine Lung Cancer Coalition, and I participate in a phone buddy program, offering hope to others. My blog, polepolebreathe.blog is named as a reminder that slow and steady wins the race. Pole pole means slowly in Swahili. That is how Dan and I followed our guide to the top of Africa one Christmas Day, one step at a time. Always, always have hope. 59233457353__C7F9845D-C46E-45CE-9B6B-667E849E2D3A

Health Update, April 6, 2019

Still LIVING with stage IV lung cancer! After another full day of driving five hours (I rode with my chauffeur Dan, joined by our daughter this trip!), IV in, blood draw, CT scans, brain MRI, EKG, and Dr. appointment, the tests results look great! No progression seen in my lungs, liver, or meninges! Twenty-one months in this clinical trial on the targeted therapy drug lorlatinib. Wow. Grateful beyond words. I will share more on the ins and outs, ups and downs of living with cancer, taking a heavy duty medication that IS reaching my brain and messing up other parts of my system, and what our trip was like (nice!) later, perhaps next week when I get the reports. But first, this:

Be on the lookout this summer for these two, having fun while showing support and spreading awareness for the lung cancer community.

LUNG CANCER MATTERS! 1 in 16 of us will get lung cancer. Research is key to saving lives, if not in prevention, then in early detection and treatment.

SPREADING AWARENESS MATTERS! More and more young people, people with healthy lifestyles, are being diagnosed with LUNG cancer.

LUNG CANCER takes more lives than the other prominent cancers combined. Know the symptoms. Don’t ignore that little cough-cough, weight loss, chronic headache, fatigue. If you think something is wrong, be persistent in finding answers. Your family needs you.

FAMILY MATTERS! I’m grateful for mine.

Always, always have hope.

Hopeful Health Update!

“Everything looks good!” said the “new to me” oncologist. “You’ve been doing well for a LONG time.” Okay friend, knock on wood, find a four leaf clover, and thank God when you make a statement like that. It IS the truth. I HAVE been doing very well on Lorlatinib. In metastatic cancer world, it HAS been a long time. 546 days on Loralatinib on that appointment day. I am grateful to the doctors, nurses, researchers, and all who send positive energy and prayers. Hope, I always have hope.

My appointment was great! This doctor was very interested in my health and in the work of the ROS1ders. He raved about how impressed he is with the ROS1ders advocacy work. And, it is always nice to see Dawn, the clinical trial nurse.

It was a different trip though because Dan couldn’t go. He recently had a total hip replacement and no long rides for him just now. My sister drove me, while the “children” helped Dan with chores, etc. My sister began this Dana-Farber relationship with us nearly three years ago, traveling with us as a note-taker and support when we first started our cancer journey. I’m glad she was able to hear, “Everything looks good!” Even my labs were all good.

So. Well, my 3 year “cancerversary” just passed. While I seldom really stop thinking about how fragile this string I’m hanging onto is, I think we’ve made a very wonderful new life for ourselves. And, this winter for the very first time ever, we are both at home every day. And yes, it IS a good thing we love each other. We are loving being together. I’ve been busy caring for the goats and dogs, filling the wood stove, and keeping the ice and snow off the doorstep.

A new hobby is is also keeping me busy and happy. I’ve spent my adult life simply knowing I couldn’t draw, paint, etc. While I see myself as creative minded, I don’t see myself as an artist for sure. Well, to my surprise – like most things – if you put your mind to it and practice, even I can learn to draw, paint, make fun art with mixed media, and Zentangle. Yes, it’s true. I’m having great fun – not just crafting, but learning to draw, learning to use watercolors, learning lots of mixed media techniques. And, I’m no longer afraid to pick up a pen and use it for something other than writing. Who knew this would be so much fun. I don’t even mind sharing it, no matter what it looks like. I’m having fun and learning, while playing and practicing. Seems crazy, but it’s true.

One more fun thing has happened. Years ago, as part of a senior thesis project at Goddard College, I wrote a children’s story. At the time Dan really wanted me to see if I could get it published, but the one place I sent it to rejected it. I tucked it away for the someday grandkids. Well, welcome to the world of self-publishing! I’ve worked with a publishing company and illustrator, and will soon be the published author of a children’s book. (Further details when it actually comes out!) I wasn’t sure I’d live to see it done. Seriously. In May, it was to take 3 months, and here we are in January. Long time for someone living with metastatic lung cancer. Looking hopeful though. Good thing. It’s on my life list to get done. (You can smile now. I am.)

Finally, if all goes well I won’t need to go to Boston until early April. Twelve weeks! You can find me here in our winter home on the mountainside, finding joy in the everyday every day. (It’s easy to do!) Feeling grateful, joyful, peaceful, and as always – hopeful.

Keep Reading Please!

Yes, I’m doing well. Yes, I know I’ve been blasting you with Lung cancer Awareness information. It’s because I LOVE YOU. It’s just one month. Stay with me here. I’ve something personal to share that you’ve not seen. Maybe it will impact your mind with visions of the power of hope, faith, and medical research. It did mine when I recently read it. It’s my CT scan report from February 25, 2016, the one that accompanies that image of my lungs that I’ve posted.

I didn’t realize it, but I was rapidly declining, dying, in late January 2016. When I got my diagnosis and we made our way to Dana-Farber, it was a whirlwind of activity to make sure that the cancer in other parts of my body was lung cancer metastasized, and to begin radiation as palliative care in the hope that it would give me some breathing relief. In the midst of all this, Dan and my sister were staying up with the medical stuff, the “kids” were taking care of things at home, and I was simply working to breathe, heart racing, one breath at a time. I think I was unaware about my actual state. How scared Dan must have been, knowing and being alone with me as I worked to breathe, heart racing, one breath at a time.

If you’ve been reading my recent updates, you know things are good. The tumor in my left lung hilum has been shrunk too small to see, my liver, colon, and brain are stable. Now read that February 25, 2016 CT scan report and be WOWed like I just was.

February 25, 2016 FINDINGS:

CHEST:

There is new complete collapse of the left lung. The primary tumor cannot be distinguished from the surrounding collapsed lung parenchyma.

The mass displaces the left main pulmonary artery and left pulmonary veins with significant decrease in caliber of the left pulmonary artery.

There is new large left pleural effusion.

There is a discrete enlarged, enhancing 2.0 x 1.7 cm lymph node posterior to the main pulmonary artery (2:29). There is also 14 x 8 mm subcarinal node. These nodes were previously difficult to distinguish on the noncontrast images from the prior PET/CT.

ABDOMEN:

Significant increase in the right hepatic mass measuring 4.5 x 3.9 cm, previously 1.9 x 1.7 cm (3:26). There is increased enhancement in the surrounding liver parenchyma on the arterial phase images. There are 2 other sub-5 mm hypodense lesions in the segment 6 that are too small to characterize.

PELVIS: There has been interval increase in the serosal deposit at the rectosigmoid junction in the pelvis measuring 26 x 23 mm(3:69), previously 18 x 15 mm (3:69).

Okay, that’s it. Were you WOWed reading that, knowing that I’m still here and functioning well three years after that? I was pretty darned impressed with what medical research has made possible. A targeted therapy cancer drug stopped the spread of the ROS1 cancer. When it crept by crizotinib (under the cover of darkness I think!), and found my brain meninges, a second target therapy drug, not even approved yet, was available to me and stopped the spread again. Hope, faith, and medical research. Wow. Research funding is needed.

I’ve been fortunate to be in the right place at the right time while on this cancer journey. I started treatment in one of the premier cancer treatment centers in the world. There, I can participate in clinical trials that are only available in a few places in the country, and unfortunately not accessible to many. Also, luckily (or thanks to hope, faith, prayers) I’ve met the criteria to enter the clinical trial. Being healthy in all other ways helps in this.

Four things I hope you’ll take from this post:

Take care of your body, listen to it, and advocate for it.
If you have a cancer diagnosis, find the best treatment available to you.
Always have hope.
RESEARCH FUNDING IS NEEDED. You can help by advocating, spreading awareness, or donating. Over 400 Americans are dying every day. Help, please.

If you want to donate to the patient-driven research being conducted on ROS1cancer, here’s my donation page: ROS1 research donation .

That’s my story and I’m sticking to it. Thanks for reading. Always have hope. Today I’m spending the day with one of the grandchildren. How lucky am I? I say, VERY! Here, finding joy in the everyday every day.

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