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.

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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.IMG_0763.jpg

 

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 Sept. 6, 2018

Nothing but smiles!  You know it’s good news when at the end of everyone’s long day, we’re all smiling – oncologist, patient, and caregiver.  Worth that traffic, worth staying overnight, worth going through a day of tests every nine weeks (lots better than the 3 at the start of the trial).  “Everything looks good.  Your brain MRI looks great!”  Wow, what more can we hope for in a visit.  Feeling grateful and blessed.

Yes, I still have metastatic (stage IV) lung cancer.  Yes, it is still hiding out in my lung, my liver, my colon, my brain.  We coexist in one body.  We will for life.  But, oh what a great life it is!  Since my first targeted therapy (my superhero Crizotinib Xalkori) in March 2016 to now I’ve learned to find joy in the everyday aspect of living in ways I don’t think I’d have taken the time to if not for this ROS1 cancer.  Since the Lady Lorlatinib (my clinical trial drug) charged in (July 2017) to protect my brain meninges as well as the rest of my body, I continue to not only survive with metastatic lung cancer, I’m LIVING well.  I know I am lucky that I’m able to simply enjoy my days, at home, free from fretting about needing to work, free to do as much (or as little) as I feel like doing. My heart aches for those whose circumstances don’t allow them to do this.

I continue to volunteer for Lung Cancer Alliance as a phone buddy and as a patient representative on a grant advisory board, as well as on an advisory board for the Maine Lung Cancer Coalition.  Also, as a ROS 1der, I try to spread awareness about the Global ROS 1 Initiative ROS 1 Patient Driven Research and the need for research funding so we may work toward the next treatments (as resistance occurs and the targeted therapy becomes ineffective), and ultimately a cure in the future.  Donations (ROS1 research donation) and ideas for raising funds and funding sources are welcome.

Thank you for your continued interest in this cancer journey, your prayers and positive words of encouragement.  Time for me to pick some peppers and tomatoes, maybe make a little salsa.  For the next few weeks I’ll be finding joy in the everyday, every day at our Salt Pond camp with Dan, the three little dachshunds, and… our two Nigerian Dwarf goats and two Tennessee Fainting goats (yup, it’s true, the herd grew.).IMG_9895.jpg

Keep writing, your voice will be heard by someone, sometime.

Keep writing, your voice will be heard by someone, sometime.   I wrote a letter to the editor earlier this year.  I wrote again and it was published this time.  There’s a limit to the number of words, so I didn’t include everything I wish I could have.  Also, some of the links aren’t live and read as words only, but it was published!

Free ME from Lung Cancer Free ME from Lung Cancer , a Maine nonprofit has funds for single family home radon abatement.  Testing your home is easy and cheap.  Abatement is done professionally and may be easy and inexpensive or it may be $5000.  Thankfully, there is help for those who need it. There are a limited number of home abatement “sponsorships” through Free Me from Lung Cancer.

Letter to Ellsworth American: Don’t Ignore that Little Cough-Cough

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.

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Enjoying the everyday every day. Me. Now.

Sharing the Journey

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.IMG_3189.jpg

 

 

Lucky to be me!

Try to imagine that you’re hiking along life’s trail, happy go lucky as can be and then you find yourself slowing to a walk and then a crawl.  That’s kind of what happened to me in the fall of 2015.  Despite the house fire recovery, things were good, and then they weren’t.

I’m lucky! For lots of reasons. I’m really grateful to the FNP or PA who saw me on that Sunday at the walk-in clinic.  She did the x-ray that led to the discovery of my lung cancer tumor.  If not for her, I’m not sure help would have come soon enough, I was crawling that slowly.  But I am so fortunate that she knew to do that x-ray that day.

And then There I was at Dana-Farber Cancer Institute barely crawling (Dan thought it was time for a wheelchair) to my radiation sessions (that were for palliative care while they were developing my treatment plan) when I found out just how lucky I really am.  I am LUCKY! My cancer, at that time already spread to my liver and pelvis, was treatable with a targeted therapy drug.  Yes, that’s right. TREATABLE!  Not sure about others, but Dan and I knew that I wasn’t going to be crawling much longer if something didn’t change, so hearing that word treatable made us feel blessed indeed.

Great Educational Reading on lung cancer, genetic mutations, target therapy treatment, and more!

Back to lucky me!!  Thanks to the testing done by Dana-Farber and Brighams it was discovered as quickly as could be that the lung cancer in my body is driven by a cell mutation called ROS1.  While ROS1 is what caused the rapid spread, it is one of a few mutations that can be battled with a targeted therapy drug that truly targets those ROS1 cancer cells and not all cells like chemotherapy does. It was available at that time for expanded access, not quite FDA approved.   And, it is a pill that you take.  I am lucky.  I was dying and in just a few days the crizotinib began to work.  I started the drug on March 2 ,2016 and check out how different my lung looked by May.  (Feb.,even after radiation on right, May on left)

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Told you I’m lucky!  I’ve had two years since cancer crept into my body and ROS1 slammed me. Great years filled with blessings beyond thinking. If not hiking, definitely walking at a good pace and feeling pretty darn good.

Still lucky! After 16 months on crizotinib, the cancer progressed to my brain meninges. Crizotinib does not protect the brain, so when one of those little cells sneak by…  Researchers had developed a newer drug that battles ROS1 that does fight in the brain, and I was eligible for a Phase II clinical trial at Dana-Farber.  Lucky!!! This drug too will soon be FDA approved.  It is a pill taken once per day.  Since July Lorlatinib has kept everything from the neck down looking the same in scans, and it has reduced the cancer in the meninges by 75%.  Lucky, blessed, fortunate – give me a thesaurus – I’m that.

Research doctors are working on the next line of treatment to work against ROS1 when it figures out the code for this treatment and builds resistance.  I, and so many others with acquired cell mutations such as ROS1, are SO grateful.

Saying I’m lucky implies that it’s all by chance.  I know that’s not so.  Something more than chance is at work here.  I’m grateful every moment of every day.