Who really wants things to be normal anyway? I never did, but then I didn't really need normalcy before. This normal isn't new or normal in the typical sense, but it is my normal as I live with metastatic cancer. And live well I must say. To do so I've needed to develop many strategies and work arounds. And I've had a lot of help. But it's all definitely worth it. Quality of life really matters. Maybe some of my strategies will work for others.
Learning and remembering your energy limits is important. Kind of tricky too as it's a moving target. There are days I have great energy and some that I have a deep, deep odd tiredness. Most days though I wake up, get myself going and go strong until noon. After that? Anybody's guess. I learned this week that I'm no longer able to push through it like I always did in my old life. When I'm done, I'm done. Kind of like a baby. And that is okay! I prioritize and sometimes have bonus time for something more.
"Love what you do. Do what you love." I've always believed this makes great sense. Well there's lots of things I love, but can't do anymore, or not yet in this "normal". That's okay too because I've discovered I love lots of things. So I'm focusing more time on the ones I can still do (like photography, being in nature) and maybe just adjusting how I do them. And I'm learning and doing new things too! Things like writing a blog! I sure have more time to read now, and I love to read pretty much anything. I have four books going right now; one fiction, two health related, and one nonfiction nature-based. None on education -that's a first!
Shortness of breath, my huffing and puffing. Haven't really found good strategies except to go slow and steady. Not likely to do much running this spring, but I am determined to do more walking in my new OrthoFeet sneakers.
Lorlatinib brought some new challenges that I've referred to earlier. One, neuropathy, is common for people on chemotherapy drugs and for people with diabetes. As much as I love to go barefoot, I cannot now, even in the house. Anyone who has an inkling that they have neuropathy in their feet should start wearing shoes or slippers ALL the time. I learned the hard way. If you have hand neuropathy, try acupuncture – helped me tremendously. I tried some of the ointments and cannabinoid oil, but I haven't found something yet that I can say gives me relief from neuropathy. Wearing gloves for any work and even driving, and keeping my feet well padded have worked best. And, I just don't stand still for long periods of time or do lots of peeling veggies as those as things that are sure to bother. I'm so fortunate that I don't have to try to work. Luckily I'm a good sleeper, so it doesn't bother too much at night. Oh yes, and ignore the feeling that a tick is crawling on your ankles. Or maybe not. Probably just neuropathy, but best to check. I spend a lot of time looking at my ankles!
Weight has been an interesting problem over the past 2 years, four months. After the fire in the fall of 2015 I decided to only buy what I absolutely needed for clothing. Then as I became sick I began to lose weight. By the time I started on crizotinib (March 2016) I'd lost more than 30 lbs. and I'm only 5'0″ and wasn't ever terribly overweight. Between cancer taking its toll and radiation doing a number on my esophagus, I had a few months of not eating much, eating mostly liquid form foods, etc. And, as far as clothes went, thanks to radiation I couldn't stand anything near my neck or wear a bra. So my daughter bought me some size small stretchy pants and v-necked loose tops. That's been my preferred wardrobe ever since. I eventually gained all that weight back when on crizotinib.
Weight gain is common with these drugs, but I had no idea what I was in store for with Lorlatinib when I began it July 2017. Everyone I know on this targeted therapy drug (still in clinical trial) has had this problem to some degree. I started out gaining a pound a week. Yes, one pound per week! Eeek! And it was not simply that I was feeling better and eating more, or that I wasn't able to exercise enough. But, thanks to the stretchy clothes I just moved to medium, keeping in mind my "fire resolution" and bought only what I needed. I was beginning to feel uncomfortable with the extra weight. By January I had gained 20+ since beginning Lorlatinib. July to January, as much as my pregnancy weight gain. From March 2016 to January 2017 that's a 50 lb weight gain. (Both pregnancies combined!) Without even trying to lose the 30 or gain back the 30 plus 20. Finally, in January the trial nurse mentioned someone having success with a paleo diet, so I tried that. (I wrote about it earlier.) Paleo works for this! I immediately lost 8 pounds and haven't gained more. As long as I feel "well" I can do this. As I've learned, weight loss from cancer and treatment AND weight gain as a side effect are common. I work with and around this by eating well and wearing my comfy clothes.
Finally,while trying to understand this "normal", I think maybe the greatest lesson and the greatest blessing that I've gained from this journey is that it is more than just okay to let or even ask others to do things for you. I couldn't do anything for someone else and very little for myself when I was so very ill. That's when I began to truly understand what gratitude and expressing your gratefulness does, not just for you, but for those you're grateful to. People who care want to do things to make your life easier and brighter when you are struggling with something in life. I still want to do everything for myself, but I don't feel badly asking for help or letting someone else do what I don't have energy or strength to do. I feel loved and grateful. And I like to look for things I can do that will brighten their days.
Late this week I go to Dana-Farber for scans, blood work, brain MRI, EKG, and oncology appointment. Dan will drive and wait patiently for me every step in the day. I will post an update, hopefully by the weekend. The prayers,positive energy and thoughts of all who follow this cancer journey give me strength.
Baseball and softball have started for the children. Fun times for grandparents. Finding joy in the everyday every day here with Dan, the family, the 3 little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.
Big Night is an amphibian phenomenon. It's fascinating, and I'm very glad I learned about it, and about how humans feel a responsibility to help. On the first rainy night in April salamanders and some frogs migrate from their winter home to their breeding pools. Often this means crossing a road, so that's where people come in. They help move the salamanders and frogs across the road. Yes, on a rainy April night, way past dark, people go out to help on Big Night.
I first went out on Big Night last year. We (my sister, niece, and a friend, new to big night!) went out on a night that wasn't so big this year. I couldn't go out a couple nights later on what turned out to be Big Night because I'd had a Big Week. Either my targeted therapy drug or cancer cause me to have less energy and stamina. But that's okay. It's because of crizotinib and now lorlatinib (and so much that's not medical) that I can think about going next year. And, the other really wonderful thing about me learning about Big Night is that I shared it with others who love it now too. On Big Night my phone chimed on the bedside and sure enough, there was a pic of my granddaughter holding a salamander. The whole family was out in the rain with friends, way past bedtime, to save lives. What a great learning adventure for the children (and their parents)!
Big Night came in a big week for me. The night before the "night I went out searching" was certainly a big night for me. I went to see the Wizard of Oz! Yup. Somewhere Over the Rainbow for me. And not just me! I got to enjoy the show with four of my grandchildren (the campers) and my son, daughter-in-law, and daughter. We all rode together and went to dinner before. Everything, even (or maybe especially) the car ride was so great. What a treat the evening was! There's so much I could say about how much that evening meant to me in any life. Yet, I can't even think how to describe exactly what it means to me in this second life I'm in. Just so precious and special.
To top off my big week, my sister, a friend, and I went to Bar Harbor yesterday and walked the trail in the village that goes along the ocean , stopping of course for lunch, but too filled for Pugnuts ice cream on the way home. I tried out my new sneakers from Ortho Feet. Pretty good! Roomy, well cushioned, comfortable. Not too stylish, but luckily that's not what I was looking for. I was looking for something that would help with the neuropathy discomfort when walking.
Dan and our son have been working on traps in the field by the house, readying them for lobstering "season". How nice it is to be here to prepare lunch for them. I'm grateful that I don't have to struggle to try to keep working like I was last year at this time. I've loved my winter at home as much as I loved my fall at our camp. Today I made a sauce with tomatoes I froze (whole by the way) from our summer garden. Soon we'll be planting again.
Enjoying the everyday every day. Me. Now.
Today I went to my PCP. I've had a hard lump on the bottom of my foot that appeared as part of dealing with neuropathy. Dr. PCP seems to think it is unrelated to my neuropathy. She/he also thinks the nodules on and inflammation of my finger tendons is also unrelated. Funny coincidence, both are caused by trauma, both involve inflammation, and both happened shortly after the neuropathy began in those appendages. I know better, but at least today Dr. PCP confirmed for me that it isn't something more serious. It wasn't worth trying to convince Dr. PCP or to argue the point. I will share my observations with my clinical trial team.
What was more traumatic was that I was in the room where I first was told I had a mass in my left lung hilum. Sitting there waiting today was unpleasant, thinking back to January 7, 2016. I'm not sure Dr. PCP knew what the hilum was that day. If she/he did know then, she/he couldn't explain it, having to look it up. The hilum is the point of entry and exit to the lung. KenHub explanation of hilum "Functionally, this means that the hilum aids the lung roots by anchoring the lungs to the heart, trachea, and surrounding structures." Left hilum, near the heart in addition to having an important job.
But, that was then and I'm here now. And, I made the choice to stay with the PCP who missed my illness totally, despite my visits, calls, and pleas for help that fall. I am so grateful to the walk-in clinic FNP who had the good sense to do the x-ray that saved my life. I stayed with Dr. PCP because of convenience. I would not have stayed for my treatment, choosing to go to Dana-Farber saved my life. I have hoped that this experience would help inform Dr. PCP about lung cancer symptoms, that she/he might listen more carefully to patients, that she/he would believe the patient when they are clear that what's going on isn't a long lasting cold.
But, today for the first time I felt angry. Not because of the lack of, or misdiagnosis. That's every Stage IV diagnosed lung cancer patient's story. I forgave him/her that day he/she had to give me the news. Today really started last week when I called to try to see Dr. PCP. I explained why I needed to be seen, and was told that Dr. PCP was booked into July. Hmm, I thought. Then I laughed. It does seem like a funny situation for someone who is already past their statistical expiration. (I inherited my mom's sense of humor.) The receptionist must have been confused by my response, but then she did tell me that if I called at 7:30 AM any day I might get in to see my doctor or another. So, I weighed my options and decided to call this morning.
So after waiting in the room with the unpleasant memory playing over and over for 15 minutes, Dr. PCP came in. Once we completed the purpose for the visit, Dr. PCP asked how I was doing. Since I hadn't been in for quite a while I explained (as succinctly as I could) about the leptomeningeal cancer progression, entering the clinical trial, and the success (80% reduction) of the new drug Lorlatinib. Then came the part that I felt angry about (and is already forgiven and soon to be forgotten). My PCP, the one who seemed interested, said, "Well, I think they send reports to us so why don't we just schedule an appointment in six months to check in." He/she didn't even know if Dana-Farber sent reports, hadn't even peeked at my chart to see what was up before coming in to the room, had no process in which he/she checked on his/her patients with metastatic cancer, and he/she thought it would be nice to check in in six months. And me? Silly me. I stopped at checkout and scheduled that appointment.
Recently I saw FB posts singing the praises of Dr. PCP. Before cancer I would have said to anyone asking about this doctor that you'd have to do your own follow-up, that Dr. PCP doesn't always call promptly with lab results, mammography reports, etc. Now I would add that if he/she doesn't care about my case enough to know if Dana-Farber has sent reports (of which there have been dozens in 2 years), then it seems unlikely that he/she is very attuned to the needs of his/her patients.
As we all know, but don't always remember – you know your own body. Pay attention to what it's telling you, and advocate for yourself. Ask questions, ask for explanations of test results and treatment options, ask for expert opinion, and if you don't feel confident about any of it, seek another expert opinion. I feel blessed that we made the right choice for us by going to Dana-Farber . They fill us with confidence in their work and with hope. Even when the news is not so good, there's no doom and gloom, and always hope.
Spring seems slow in coming here on the mountainside. The goldfinches are now bright in color, and tom turkeys are in full strut, dancing for the hens. Dan and our son are now over in the field daily working on getting the lobster traps ready for another season. I am truly finding joy in the everyday every day with Dan, the family, our three little dachshunds, and Dottie and Matilda, our spoiled Nigerian Dwarf goats. And, tomorrow night my children and grandchildren are taking me to see the Wizard of Oz. Blessed.
If I had a favorite season, it would be spring. There are things I truly love about each season. Spring just has so much to love. Even with the ground and everything else covered with FEET of snow, I felt spring yesterday. The vernal equinox was 12:15 PM. I was at a meeting of a Maine Lung Cancer Coalition advisory group when spring began, but two hours later as we stepped outside into the sunshine, even surrounded by parking lot snowbanks, I felt spring and breathed a big sigh of relief. Phew, I made it, made it to spring. I bet lots of animals have that thought, perhaps not at the moment , but later, when the snows melt and the trees leave.
Sigh of relief? Made it? You see, many years ago my grandmother pointed out that more people die in winter and she said if she made it to spring, she'd go a while longer. She nearly made it to 100. This was my third big sigh of spring relief. The first in 2016 I was just 18 days into my first targeted therapy treatment and knew from how I felt that it was working. Huge sigh of relief. I would conquer the beast inside my body certainly long enough to enjoy another spring. Today I'm feeling pretty darn good, in great shape for the shape I'm in. The beast is once again contained by the targeted therapy drug Lorlatinb.
I love all the things in nature in spring like most people do who are lucky enough to notice, from the smell of the mud to hearing new songs each morning and evening. There's so much to see and look forward to. Everything seems new or renewed, just born or re-born. My babies are spring babies. For all beings, I think it must be the season of hope, spiritually and physically.
Today memories of "springs past", sprang into my head. Ha! True though. Memories like the leaves in front of me as I crossed the Waldo-Hancock bridge for years daily, first simply appearing and then over weeks changing their shades of green . There's really nothing else like spring green. Dan's grandmother's joy in attending Easter sunrise service and breakfast with her great-grandchildren, so sweet. Then there's the Easter 55 years ago (give or take a year or two) when we camped out in the woods behind our house. Easter Bunny didn't know what to think. I think it really happened, my younger brother wouldn't remember because I was the baby then. I do remember that. Or the April 42 springs ago, that my "ready to be born" daughter nearly jumped out of my body when the engine of the Patty P II, her grampa's boat, was started for the first time ever. A few days after that we went on a rough road to go "alewiving" (alewife the fish) to see if we might jiggle her out. Spring memories.
In recent years a great memory maker is our now annual family weekend at Spencer Pond Camps , off the grid wilderness lakeside cabins in the Moosehead region of Maine. Dan, me, our children and their spouses, and our five grandchildren fishing, hiking, bike riding, kayaking, moose spotting, toasting marshmallows and playing games in the evening, and even relaxing in the porch swing. So many memories. Moving to our Salt Pond camp, now even more exciting with Dottie and Matilda, the Nigerian Dwarf goats, riding along. The year we lived at camp I saw the return of ducks and other migrating birds. Closing my eyes, I see spring sunrises from the Salt Pond to Grand Canyon. Spectacular, all. Planting the garden, and patiently (or maybe not) waiting for something, anything to come up. Dan working on his lobster boat and traps, readying them for another year. Every spring for about 46 years. Picnics at the boatyard during April vacation. Memories. And new spring traditions. Last year was my first spring Big Night, the first rainy evening in April when the salamanders cross the roads and people go out and help assure their safe crossing. Quite the phenomenon! A fun time and I hope we helped the little guys out. Started a phenology journal so I can follow the changes from year to year. So many memories.
Watching the goldfinches acquire their gold today (you can almost see it happening), I think of watching Mr. and Mrs. Merganser the spring we lived at camp. How beautiful and how different he looked from Mama Merganser and her babies in summer. Spring memories. Looking forward to seeing the snowshoe hares in the field soon. And baseball and softball. Lots of memories to make. Looks like a busy spring for this Gramma.
Time to re-hibernate and rest up – there's more snow on the way. Reminds me of the April snowstorm in 1975 when I was stranded on a hill in Orland. Out of the blinding snow appeared the dad of my best childhood friend. Hadn't seen him for a decade, and there he was to rescue me.
Here in our winter home on the mountainside, finding joy in the everyday every day with Dan, the family, our three little dachshunds, and Dottie and Matilda, our Nigerian dwarf goats. Dreaming of springs to come.
The good news is IT'S ALL GREAT NEWS! No, I'm not cured. No, I'm not NED (no evidence of disease). Don't waste your time worrying about those things. According to "my" oncologist at Dana-Farber, my brain MRI, CT scans of my chest and abdomen, EKG, and blood-work all look GREAT. I won't see the reports myself until next week for details, but GREAT will do.
Our morning started with a blood draw and IV at 6:30 AM at Dana- Farber. (Sent a pic of IV to our granddaughter in nursing school who just successfully inserted her first IV) Then, after a brisk walk across the bridge, I had the brain MRI and the CT scans at Brigham and Women's. After those, it was a race back to Dana to the 10th floor for an EKG, vitals check, and appointment with the doctor and the clinical trial nurse. We finished all this at 9:55 AM. Record time I'd say, thanks to a new patient coordinator who booked my appointments overlapping one another. Oops! Everyone made it work just fine.
After the appointments we waited 45 minutes for my wonder drug Lorlatinib. It is she who is in there day after day tracking down that nasty ROS1. Lorlatinib is relentless in her work. I am grateful to those who developed Lorlatinib. With each drug developed we get closer to the time when lung cancer is managed as a chronic disease, until there is a cure. I'm grateful to all the brave patients in the first trials of this and other drugs being developed for ROS1.
I continue to work on my part of the deal with Lorlatinib, keeping myself healthy. This work includes: acupuncture for neuropathy, paleo diet for the nonstop weight gain (now stopped), immune system support (advised by acupuncturist, approved by oncologist – some supplements were nixed by oncologist due to unknowns of drug interaction), and energy healing meditation/practices. Soon will be increased time outside. It's a full time job, staying healthy, but it's paying off. I'm not just alive, just surviving, I'm thriving, and feel well – all things considered.
So, after a whirlwind trip to the city (traveled there yesterday), we arrived home at 4:30 PM. Dan does a lot of driving and waiting. It can't be easy. We're a team, he says. He's a wonderful man. And now here we are, back to finding joy in the everyday every day with the family, three little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.
I can't imagine traveling this cancer road alone. No one should ever, ever have to. I'm so very grateful that I'll never have to. In fact, my family has grown through this journey. This struck me again today when the caregiver wife of a ROS1der posted a heartfelt and loving message to us all. While I've never met any of the ROS1ders, I feel incredibly close to them in the 22 months since I found the facebook group established for cancer patients who are ROS1+. This family has nearly tripled since I found it, and is worldwide.
The ROS1der FaceBook group is a closed group (public site: ros1cancer.com), and I cannot share the details of that lovely post or anyone's specific information, but I can share what makes them my "family". Most, but not all, have lung cancer. Most, not all, have metastasized cancer. Most, not all, have been on the drug Xalkori crizotinib, my treatment hero, the reason I survived long enough to even call this a journey. Many, maybe most, are younger than me, many with children at home. Many have had treatments that I've not had. Many are in clinical trials, some on the same drug as me (lorlatinb – hero drug #2), some on other targeted therapy drugs that are giving hope to ROS1ders. All are either ROS1+ or the caregiver of someone who has ROS1+ cancer as required to be a group member. Because of all we do have in common, there is always someone who understands, or can relate to, what another is experiencing. Beyond that even, there's just such a feeling of empathy and sincere caring about one another's well being in the group. In this group we share information, learn how different oncologists approach different topics, hear about procedures and tests as described by the patient, get the latest news on clinical trials and research, share tips about dealing with side effects and symptoms, options for and how to access healthcare/treatment, and so much more.
I've tried to think what it is that makes this family so very special compared to other organizations I've been part of and even considered family. I believe it is the never-ending optimism, the incredibly high level of HOPE, STRENGTH, COURAGE, and FAITH. The people in this group have so many (not every!) reasons to feel and speak only doom and gloom, but not in this family. Our fears, worries, and sadness can be freely expressed and we know they will be responded to with caring and genuine concern. It is a safe place. This is a difficult road to travel. Love, compassion and support, research and answers, virtual shoulders to cry on and hands to hold are all offered. Always, always with an eye on a future where, if not a cure, then treatment for managing cancer as a chronic disease, always HOPE.
My ROS1der family, a FaceBook group. Who knew I'd find such camaraderie in such a place. Huh. Another of the countless blessings that have come my way on this journey. May every human needing such a place, find theirs.
Finding joy in the everyday, every day.
Great news, again! Right up there with some of the best news I've had since beginning this journey. Writing this in our hotel room, a block from the most wonderful cancer institute in the world, Dana-Farber Cancer Institute. Wonderful: inspiring delight, pleasure, or admiration; extremely good; marvelous. Yes, wonderful! Regardless of the news I might receive from them, they certainly have inspired admiration from me, data shows their work is extremely good, and the people we've met there are delightful and quite marvelous in their treatment of patients and caregivers.
Back to my news! Stable from the neck down, AND (drum roll please) an 84% reduction of the nasty beast in my brain meninges since beginning my second wonder drug Lorlatinib in July.
Today was another long day for us. We stayed in Portland last night to make sure we would arrive at Dana-Farber for a 10:30 AM start. At 10:30 PM the fire alarm went off in the hall of the motel last night. Some kid had burned his popcorn in a microwave. We didn't have to go outside luckily. Today began with "free" breakfast at 6:00 AM, followed by a very quick 2.5 hour drive to Boston. No morning traffic – unlike any other day we've gone. Vacation I guess. We even parked on P4 instead of P6 of the underground parking garage!
My appointments were all the "usual": IV in, blood draw, CT scans of chest and abdomen on L1 in the Dana Building, brain MRI and IV out on Dana 3 , grab some lunch (Yawkey 3), check vitals, EKG, Dr. appointment (Yawkey 10), and wait for medication (Yawkey 2). Done at 4:00 PM. Nothing to it!
Here's more great news – I am scheduled to return to Dana-Farber on March 1, 2018. Nine weeks!! Yes, nine. That is the longest between appointments in the 23 months I've been a patient at Dana-Farber. Wow! Now, will I be nervous about that? I don't think so. I know my body, and the difference between symptoms and side effects pretty well now. And, my clinical trial nurse and oncologist are just a phone call or 5 hour drive away!
For me, 2017 has been the year I began to learn to LIVE with metastatic lung cancer, helping to create new statistics, and bring hope to those diagnosed with this disease that still currently kills 433 Americans every day. We can, are, and will continue to do so much better. There is great hope for the newly diagnosed.
Happy New Year to all our family and friends, new and not so new! Your positive thoughts, love, and prayers continue to help give me the strength needed for this journey. Please test your home for radon this year if you've not yet done so.
Looking forward to us going home to the dachshunds and goats, comfy and cozy for the winter, feeling grateful, and finding joy in the everyday every day!