neuropathy – polepole ~ breathe

What’s the name of that song?

I think it’s Live Like You Were Dying. I don’t care as much for that song as I used to. I mean, I get it, but it just isn’t the way it really is. Not really, for me anyway. The song I relate to much more is Never Take a Breath for Granted. Here’s why. When you get the news (as the song goes) that you have a terminal illness, that you are going to die sooner rather than later, it is very likely you’re too ill to waste time riding a mechanical bull. You need to get yourself to the nearest expert right away. There you might discover great hope, a plan for high quality of life (so you can decide if it is time to go skydiving today or if you might enjoy it more further down the road) , a roadmap to living well for as long as you can. In my way of thinking if you never take a breath for granted, you are present, truly present all the time. Not in a frenzy to see how many of the crazy things you’ve thought of doing you can do before you kick the bucket. But living in joy every day, thoughtfully revising and adjusting your life list to match the journey you find yourself on.

In my quest for keeping my body healthy so that my targeted therapy drug Lorlatinib can do its job beating down the notorious ROS1, driver of my cancer (Yes, I own it.), I’ve discovered essential oils and a wonderful health coach. bridgesforhealth.com It’s too early for me to say that this is helping my neuropathy, immune system, and numerous other things that need help in this journey, but it sure does feel good, and right. I’ll keep you updated.

Lorlatinib, as I’ve said before, causes cholesterol problems and weight gain. A few people in my ROS1 Facebook group have managed to keep cholesterol numbers healthy by eating a diet very high in Omega 3. Worth a try, I love sardines! We’ll see on this too. And, maybe the essential oils will help so much with the neuropathy that I can get on some hiking boots. Now that would be pure joy. (Even if I don’t lose an ounce!)

And, I must share that I am STILL playing. Have you ever seen such beautiful cereal box cardboard? yChzP9vaRG27xKYCm%YUDw.jpg

Or such a cute little felted gnome?

Didn’t think so!

Softball and baseball season is upon us. We have four grandchildren playing one or the other. Readying camp for our move, snowdrops are blossomed. Preparing to travel to see our now RN, BSN granddaughter be pinned and graduate. Finding joy in the everyday every day. Be present. Never take a breath for granted.

Good news Health Update

Chest and abdomen scans, brain MRI, and blood work all look good! Wow, that means the cancer that is there is stable and the drug isn’t messing with my body badly enough to need to make changes. Now, unless I become symptomatic, we can breathe a sigh of relief for another nine weeks. That takes us through the holidays all the way to my third cancerversary! Yup, three years since the big blindside. Three years of figuring out how to live well with metastatic lung cancer. Three years of living!

Below: February 2016 and May 2016 after two months on my first targeted therapy, crizotinib.

IMG_2968 (1)

Yesterday at 3:30 a.m. we left home to drive to Dana-Farber Cancer Institute for the above tests and an appointment with my oncologist and clinical trial nurse. Big traffic jam getting in, but 6 hours later we arrived, parked, made our way to Dana L2 (I think). I got my beverage of the day in prep for the scans. Then blood draw (extra for the study) and IV in for scans. Scans done and in for brain MRI. Ear plugs, bean bags around my head, hockey mask on, and slide in for a noisy, long nap. Did I say it was long? Oh yeah, I did. IV out. Then back to Yawkey and up to 3 for a very quick cafeteria lunch, and on to the 10th floor. Vitals done (anyone wonder why the blood pressure might be up), EKG, and off we go to the patient room. Whew! In comes a fellow (yes, a fellow fellow) and the nicest trial nurse you can imagine. Dr. ? (the fellow) told us the scans looked good and that Dr. J, my oncologist was waiting for the results of the MRI and would be in shortly. We talked about my neuropathy, and my theory that the tendon inflammation I have (hands and feet) is related. No one can explain it to me, still. After listening to my heart and breathing (all good!), the fellow left, we talked with Nurse D, and then soon the Fellow and Dr. J were back. The brain MRI looked stable too. So, good news all around.

Dr. J suggested I might want to reduce my dosage again to see if that helped with the neuropathy. Early on in the trial we reduced the lorlatinib from 100mg to 75mg for that reason. I said, “No thanks, I don’t want that nasty beast back in my brain.” (Not that it is totally out.) We talked about it a bit more, and Dr. J said, “So you can live with it this way?” And of course I replied, “You used the key word there. I choose to live. I’d rather not take a chance on it now.” And so, I remain at 75mg.

Finally it was off to floor 2 to wait for the cancer fighter, our Lady Lorlatinib. I imagine her dressed in white this day for Lung cancer Awareness month, riding from the heavens on Pegasus. She is a powerful ROS1 cancer fighting targeted therapy drug – that I know. Whenever I feel her working in my brain, I am grateful. Grateful to ALL that make it possible for me to live.

When everything was done, it was only 2:45 p.m. We find the car in P5 and head to Seabrook (much cheaper place to stay), an hour away. In good traffic that is. Two hours for us yesterday… Dinner and off to sleep. Up at 5:00 a.m., a stop for breakfast, and home before 10:00 a.m. A whirlwind 30 hours! For both of us – thank you Dan.

And now here I am on the couch with the dachshunds, bird feeders filled! Finding joy in the everyday every day.

ROS1ders are raising research funds to learn more about, and to find treatments for ROS1 cancer. If you can help us, just follow the link below. Thank you.

Donate to ROS1 cancer research

Health Update July 3

Health Update July 3, 2018. “Scans look good! Blood work is all the same. How are you feeling? What have you been up to?” This is how the oncologist (one of my heroes in this journey) comes into the the room. “Phew! I feel great now,” I think. Moments before Scanxiety had taken a stronghold over my usually calm mind. It’s nerve-wracking, this journey in which the things that are likely or even certain to happen eventually (like drug resistance) may carry with them few to no options at this moment in time. Time on a drug means time for researchers to work their magic and develop the next line of treatment.

Just to recap this journey – diagnosed Jan. 2016, metastatic non small cell lung cancer -tumors in left lung hilum, liver, pelvis. (NO. I never smoked. Silly you, silly me. I HAVE LUNGS!) Okay, enough on that. Radiation to lung as palliative care. Genomic testing showed that the ROS1 mutation is driving this cancer. March 2016 – First wonder drug crizotinib – lung tumor can’t be seen, others stable! March 2017 – nasty beast crept into my brain meninges where crizotinib couldn’t go. But while the fair lady crizotinib was saving my life, researchers were developing her stronger, more versatile friend Queen Lorlatinib. July 2017 – entered Lorlatinib trial. Lucky to be able to do that at my treatment center. (That’s why we travel to Boston for treatment, they’ve kept me alive.) Clinical trial means trips to Dana- Faber every three weeks, then six, now every nine weeks. Both drugs are oral, taken once or twice a day.

Today marked a year on lorlatinib. My appointments began with a blood draw and IV inserted. For the first time, the first vein didn’t work, so I got stabbed in both arms. Next up was the brain MRI. The techs complimented me on how well I did. “Practice, lots of practice!” I replied. When they apologized, I said, “Oh no, it just means I’m still here and that’s a good thing!” Then I got my yummy drink for the CT scans of my chest and abdomen. All the while Dan waits patiently. After these tests in Dana, we walked through to Yawkey for lunch and then up to floor 10 for my EKG and Dr. appointment. Here’s why the Scanxiety set in at that moment. After doing vitals (good, oxygen a little low), instead of doing the EKG, the nurse took us through a different door than usual to a room to wait for the Dr. This weirded me out big time – not my routine, not his room, what’s up?! Nothing, it turns out. Sorry that I scared us both. Different room probably because Dr. Janne doesn’t usually see patients Tuesday, but was going to be away Thursday. They truly forgot my EKG, maybe in their excitement to go home for the holiday. Did it after the appointment, and it was fine too. All good, see you in September! Camp Gramma is good to go for the rest of the summer!

Now, I write this blog for a few reasons: to keep those who care updated; it’s therapeutic for me; and to inform people through sharing my experience, and advocate for those on this journey of living with metastatic cancer. I know I’m lucky to be alive. That being said – it’s not like someone chooses to have metastatic cancer. I can now though help others by sharing – thus bringing purpose to this experience. So when I get wordy or meander off topic, it’s likely meaningful to me for one of the above reasons. You get to choose – don’t read it, read the first paragraph to see that all is okay, read until I wander, check out the tags and see if you can tell why I chose them, or read it through. No quiz at the end!

Today too I had to re-sign my clinical trial agreement as there were some changes. One is great news I think for my fellow ROS1ders. The trial is expanding from 30 individuals (with ALK or ROS1 NSCLC, brain progression) to 48. More lives saved! And the other reason is that now the side effects are better defined, and one with a small chance of happening is a very serious heart condition. But seeing the list of side effects brings up a part of this journey that I touch on, but try not to dwell on. It is though what I and anyone else on these drugs experience and some we will deal with for the rest of our lives, however long that may be. Keep in mind that before cancer I took no daily medication, and have no other health issues. Here are the risks on the lorlatinib list that I experience: increase in cholesterol and triglycerides (take a statin now for that); damage to nerves in arms, legs, feet, and hands (tingling, numbness, pain, tendon inflammation now in hands and feet) – drug is reaching my brain!; mood changes, including irritability (I don’t see it much, but I’m pretty sure Dan does and helps me through it) – drug is reaching my brain!; slowing of speech – drug is reaching my brain!; swelling of legs; fatigues; weight gain (can’t change this no matter how hard I try). There are others that I don’t experience. My strategy in thinking about this is to do everything I can to keep my body and mind as healthy as I can. No sense in thinking too much at this point as to what damage the treatments and the tests (at least 14 brain MRIs, 14 CT scans in just over a year) are doing. Actually the idea of dealing with the long term effects simply gives me hope that there will be a long term in which to deal with them.

Always have hope, faith that there’s purpose in your journey, and love for and in your life. That’s it for now – I think my mood’s about to change! And laughter, always have laughter in your life. Maybe some children, kids, and dachshunds too! Thank you for your thoughts, prayers, and love. Love to all. Enjoying the everyday, every day here, there, and everywhere – that’s me.

Camp 2018

Normal must be overrated

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.

And then there’s the digestive system issues. When I first started crizotinib I took a few different meds before my system could tolerate it being there. Imodium went with me everywhere because I never knew when I’d have a bout of diarrhea. And no advance notice usually, so pads or disposable underwear, extra clothing, disposable wipes. Carried my backpack everywhere. That doesn’t seem normal, but it became routine. In addition to the clothes I try to remember to carry food that I know I can eat in case I can’t eat what is available. With Queen Lorlatinib, my current targeted therapy drug, the digestive system issues are much less for me at this time. (Fingers crossed!)

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, Big Week

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.

So I got to thinking about it. I understand that they need to stay wet, so rain is needed. I understand that they avoid sun for the long journey, so travel at night. But why do they cross the road? Why not find a vernal pool on their side of the road? I mean really. I saw the poor little guys crawling over that winter “salt sand” to even reach the road. Why? Simple. They are returning to their ancestral breeding pool, not just any vernal pool. And so that adds to why it is so wonderful that people help them. It is our responsibility since we put the road in their way. Here’s one naturalist’s explanation (and an interesting blog to follow). Mary Holland’s “Big Night” explanation

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.

Be your own Advocate

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.

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