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 The statistics available are outdated.)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

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?fullsizeoutput_1304.jpeg

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.

Stay Focused on HOPE

“It is what it is. Life is what you make it.  When life give you lemons…”  You get the idea.  Don’t offer me any more of them right now.   Please.  And, thank you.

Today I had a meltdown, a rather big one.  I share this because sometimes I think I make this living with lung cancer stuff seem much easier than it is.  And that’s not fair to all those living with lung cancer or their caregivers.   I have so many things that are going right on this journey and so many blessings every day.  The reality is that many are really suffering and over 400 Americans die of lung cancer every. single. day.

It began quietly, building throughout the day.  Dan and I were both aware it was happening.  He tried to steer it in a more positive direction.  I could do nothing but let it go.  Every little thing throughout the day reminded me of what I cannot do because of lung cancer.  (Not my usual self.)  By the time I realized that my somewhat crazed state was likely my medication doing it’s job in my brain, I was in tears.  Sobbing, I said over and over, aloud and in my head, “I don’t want this lung cancer anymore.  I don’t want this lung cancer medicine anymore.”  Well there.  Okay then.  Now that’s wishful thinking.  Because really? Really, for me there is no choice.  I can’t just wish this cancer away.  Anymore than there’s a choice about aging.  What’s the alternative?  Death.  That thought knocked some sense into me.  I’m not ready to give up on life yet.  I’m still a healthy, young woman, just with lung cancer – my first brilliant oncologist Dr. Gandhi told me so!   I wiped my tears, apologized to Dan, who held me through it all (as he always does), and moved on with my day.

Tonight I’m back to normal, my normal.  Living well with lung cancer.  And I know my medicine, the fair Lady Lorlatinib, is reaching and working in my brain.  I don’t mind that my fingers and hands feel prickly as I touch the keys.  Neuropathy, it’s a brain thing.  It’s like I told my oncologist about my odd headaches, vision flashes, and messy speech – it means the medicine is working in my brain.  Lady Lorlatinib is working very hard to contain and control that nasty little ROS1 riding around in his sports car throughout my body.  I am grateful for this powerful drug and the research teams that identified ROS1 and treatments to slow down that speedster.  Tonight, why, I even laughed when I put my cup into the cupboard to warm instead of the microwave.  Huh, no buttons to push.  Oops!  (And no, everyone doesn’t always do that – I never did…)

My purpose in sharing this post  is why I share my journey at all – to help people understand the metastatic cancer journey.  To inform people who are well, so they may reach out to others with compassion.  To inform others with cancer about the importance of finding excellent treatment, keeping your body healthy, and living with peace and hope.  For me today was just a blip on the screen.  Kind of like those teenage PMS days. The real me – I am at peace with my life,  filled with hope, and surrounded by love.  I pray for that same state of being for all who travel this road.

This is Lung cancer Awareness Month.  Beware!  And BE AWARE.  If you have lungs, you are at risk for lung cancer.  Early detection can mean possibly being cured, saving a life.  Detection and genomic testing can mean a targeted treatment, saving a life.   Research funding is needed so that the heroes can do their work, finding treatments, causes and preventions, and cures.

Me.  Finding joy in the everyday every day, in the barn with the goats, snuggled on the couch with the three little dachshunds, just being here with Dan, in our home on the side of the mountain.  Thanks for listening.  Your prayers and thoughts of strength and positive energy for all who have lung cancer are needed and appreciated. Love to all.

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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

 

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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.

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Camp 2018