Trot, trot to Boston!

Remember that nursery rhyme?  No?  That’s okay.  Like many nursery rhymes, it really isn’t as baby friendly as a rhyme ought to be.

Good news!  All the test results I did receive so far from my whirlwind day at Dana-Farber yesterday are just the same as May.  Stable. No progression seen in chest and abdomen CT scans.  And, blood tests results (except cholesterol) are very good.  In the days of COVID-19 I didn’t  get a same day reading of my brain MRI, but I am expecting that to be okay too.  (Power of positive thinking, and I’ve no new symptoms.)

Because of a mix-up in scheduling, DF wasn’t able to get my testing all done in a timeframe that made it possible for my superhero chauffeur to drive to Boston from home, wait in the car, and drive back home in one day.  That presented a big problem in my mind as the only buildings other than ours that I’ve been in since March 8 are 2 health facilities. So, ugh.  Decisions, decisions. Postpone?  Twelve weeks is already the longest allowed time between appointments when in this clinical trial, and from our perspective it is plenty long enough. So no postponing.  Because I learned about Thursday’s appointment Monday afternoon (it was first scheduled for next week, which I thought seemed odd because that was 13 weeks), it was really too late to ask someone to go with us.  And besides, you know… COVID-19. (Not fair to ask of someone.) Ugh, okay.  Well, in May everyone we saw on the streets wore a mask, and at DF I felt as safe as one could in these times.  The Inn at Longwood, a hotel a block from DF, is accustomed to medical patients staying there, so they must be careful.  Fingers crossed.  I packed enough food and water for two days, and decided we could get to a room with no/minimal contact and sanitize surfaces when we got there.  (I did not take our own bedding.)

We left home at 2:45 AM.  We always allow some time for traffic.  For the second time, traffic, even going into the city, was light.  (I think many may be still not working, not traveling, working from home.)  We already knew that Dan wouldn’t be allowed in with me.  (Typically during the day of appointments, there’s down time to be together, I know he’s just outside the room waiting, and he’ll be at the appointment when we hear the results.  But, that can’t be in the days of COVID-19.) His plan was to sit in the car until he/we could go to the hotel. Fun, huh?  Me?  Even more fun, if possible.  The day (and trip) worked out pretty well.  But to me it seemed like  lots of exposure to lots of spaces and people.  All masked.  All distancing.  Here’s a recount:

8:00 AM start from parking garage.

Elevator (alone) to Floor 1 Yawkey.  COVID-19 screening questions, get surgical mask (everyone, even if yours is comparable). (Two different people) Get badge showing I cleared screening, learn that because we’re a little early I must wait in cafeteria before going to lab.

Elevator to Yawkey Floor 3.  Sit in cafeteria, touching only my phone to text Dan and call hotel.

Elevator to Yawkey Floor 2.  Check in with receptionist for labs. Get the usual clip on badge that can find me, answer same COVID-19 questions.  Sit in waiting area.  Go to lab, nurse draws blood and puts in IV.

Elevator to P2, walk through “tunnel” to Dana.  Screeners there see my badge.

Elevator to Dana L1.  Check in for CT scan. Same COVID-19 questions.  Sit in waiting area.  (Everywhere chairs are spaced, and the number of people is much lower than typical.  Makes me wonder how many people are putting off treatment.  You can’t zoom scans.)

Called into room where typical CT scan questions are asked and to get nasty drink.  (Person again got drink, and wasn’t wearing gloves.  Yes I want a straw, sanitary I hope inside that paper.)

Back to waiting room.  Same chair is empty.  Wipe hand sanitizer on bottle.  Spend 30 minutes drinking nasty drink.

9:50 AM  CT scan.  IV unwrapped and flushed, scans.  Dye in IV, scans.  IV flushed and wrapped.  (I still wonder how you can taste the saline so quickly or at all when flushing the IV.  I need to google and watch an animated video of that.)  CT tech says MRI called and I can go there now instead of 1:00.  Okay!  Wait, we’re going to try to check in at hotel.  Send quick text to Dan.

Use bathroom on Dana L1 before leaving.

Elevator to Dana 3.  Check in with MRI receptionist.  Same COVID-19 questions.  Sit in waiting area.

Tech comes out to get me. Changing room and locker.  All off but undies – hospital johnny, pants, and socks.

Into prep room (my term) where MRI questions are asked and IV unwrapped and flushed.  Same Tech.

Into to MRI room.  Mask upside down.  (The nosepiece will show, but on my chinny chin chin.) Lie down, two techs (I’m not sure what their professional title is.) tuck me in.  Nighty, nighty.  Halfway through I’m hauled out (don’t move!) for dye to be put in IV.  When done, back to changing room.  Take clothes from locker, dress.  Go back through waiting area.

Walk across bridge (indoor) from Dana to Yawkey.

Elevator to P5.  Hand sanitize and get in car, interrupting Dan’s lunch.

11:30 AM Hotel parking garage, check in, sanitize room cards, elevator to Floor 7, enter room, and wipe down as much as sensible (maybe more).  The room looked very, very clean when we entered.  Things like remote were wrapped in plastic (changed each time).

Put food in fridge,  have lunch and rest in hotel room.  Both unexpected and appreciated.  Usually there’s no time for me to eat (or I can’t before a test/procedure) and I never really rest on DF day.

2:30 Elevator to lobby.  Walk one block to DF.  Everyone is masked and distances.

DF Floor 1.  Ask if I need screening again or new mask.  Young man handing out masks says no.  Good thing I have on a new, clean surgical mask.

 

Elevator to Floor 10. (one other person).  Check in at receptionist for EKG and Dr. appointment.  Same COVID-19 questions.  Sit in waiting area.  Very few people in a very large space.  Feels so different.  Thinking about  going to my appointment without Dan, I am grateful that the people coming to their first appointment are allowed to have a companion.  And no, I’m not going to FaceTime the appointment.  If there’s hard news, I want to be with Dan when he learns about it.  Okay, enough of that.  Good news is what we got.

Into to room with nurse for vitals to be taken. No I don’t want the kg to lb conversion, thanks.

Into different room for EKG.  Lie on bed/table  Socks down, shirt up.  Sticky pads here, there, and almost everywhere. Two nurses (I’m quite sure they are nurses) – one supervising the other who does the EKG.

Back to waiting room. Different chair.

Another person takes me to the exam room for my appointment.  This day I saw a NP.  When I first started at DF I frequently saw Margaret, so I was excited to see her, and always am happy to see Nurse Dawn (clinical trial nurse).  Margaret and Dawn come in together.  We talk about tests (all good, MRI reading next day) high cholesterol (it is a known med side effect, but as Margaret said, “We don’t want for your heart to be damaged by the medication”, maybe trying yet another new med for the cholesterol.) We discuss other side effects (neuropathy is “okay”, weight gain makes many aspects of life difficult).  Up on exam table/bed.  Lungs and heart sound good.  Off to get next 12 weeks of trial drug.

Elevator to Floor 2, one other person.  Push button at trial drug window of pharmacy.  Not ready.  Sit in waiting room.  Sit in waiting room.  Sit in waiting room.  45 minutes.  Get med.  No touch, expect bag to drop in my bag. (Can’t walk the streets with a clear bag of pills, even if they won’t do anything good for nearly 100% of the population.)

Elevator to Floor 1 (Never see stairs offered as choice.), one other person.  Out the door!  Yay!

Walk back to hotel.  More people, still masked and distancing.  Remarkable and impressive.  (Especially since at the Rusty Lantern in Augusta where we filled the gas tank, no one going in and out of the convenience store had a mask.)

Into to lobby and up the elevator to Floor 7.  Into room, wash hands, change clothes. Brew tea.

Nothing to it, right? A full day.  I am not complaining, just hoping to help people understand.  It’s tough and tricky.  It’s tougher and trickier in the days of COVID-19.  And I really have it very easy compared to many.   I am grateful I am a very healthy 63 year old, living well with stage IV lung cancer.  I am grateful little ROS1 is treatable, knocked on his fanny for now by the honorable Lady Lorlatinib.  I can deal with the side effects, as they are currently.  I am grateful for my Dana Farber team.  A special thing I learned – Dr. Ghandi, my first DF oncologist has returned to DF!  Not Floor 10, but back, so that is very good news for DF.  We will forever be grateful to her for giving us so much hope at a time when others are made to feel so empty of any hope.

And, now here we are.  Back at camp, finding joy in the everyday every day.  At 5:00 AM we left the parking garage in Boston, stopped once to fill up the gas tank (Dan, hand sanitizer used), and were greeted by happy goats and dachshunds!  And, a little more sanitizing because our spoiled puppies had overnight guests.  Thanks Mandy and LL, for staying over. (They DO NOT like being left, even when checked on.  Peace of mind for all of us.)

Thanks for reading, and for your support.  Be kind to others, please.  Try to find joy in your day every day, it helps.  And please vote.  If by mail, vote early!  Love to all.

 

 

 

 

Stable, inside and out!

Stable scans = great news!

When cancer joined our life, we knew things were never going to be the same or what we dreamed of for our old age together.  Over the past four years we’ve built a new best life for ourselves, and have settled in to enjoy our time on earth, however it looks or long it lasts.  We take each bump in stride, and have been very fortunate that there’s always been a way to pick ourselves up,  dust off, and move on. Trying to stay healthy and well informed about health choices and needs is on the forefront, never taken for granted.

So when Coronavirus came around, we were as ready as we could possibly be.  On March 5 we had my day at Dana Farber.  On March 8 we did a comprehensive grocery trip, and then settled in a little more.  In fact, I’ve not been inside any dwelling except my own since March 8. Dan has visited his dad, but has been inside no stores, etc.  Thanks to full freezers and pantry, family, curbside, some online shopping, and “distance”  outside visits we’ve thrived.  My “go to” stores are now Merrill and Hinckley, Blue Hill Co-op, and Surry General store.

But of course when cancer lives with you and you’re in a clinical trial, oncology appointments must happen even if you feel you are doing well and think you’d know if there was progression.  I was allowed to skip my six week labs because I’ve been stable for so long.  Not so with my day of tests at 12 weeks.  In my world twelve weeks between scans is a long time.  (This trial began with every 3 weeks.)

But what about coronavirus?  Dana-Farber is safe.  But Boston isn’t safe, I watch the news.  We aren’t really going to Boston, we’re going to Dana-Farber.  Dana-Farber is safe.  Dana-Farber is in Boston.  And so it went for the two weeks leading up to the appointment. I talked with the trial nurse, who was working from home.  I learned that after my tests there would be a phone appointment, a conference call.  I learned that very strict guidelines were in place, and any appointments that could be postponed or done by Telehealth were not be conducted at DF.  Mine were not to be postponed. (Doing all tests locally would not be easier or as safe, we concluded.) Then, I received three calls in the two days leading up to my appointments regarding  COVID-19, asking me screening questions. So. Hmm. Huh.  No more excuses.  Not any sensible ones.  We would do it all in a day trip.  Dan was confident he could drive there, wait, and drive back safely.

So yesterday we went!  Got there in record time – no traffic!  Even though I felt unsafe, I do believe I was as safe as could be when at Dana-Farber.  Only the patient may go in (with very few exceptions).  This was a first for me.  Masks are a must when you leave the car.  Everyone is screened upon entering ( same questions as on the phone) the Yawkey lobby and given one of their masks.  “Sneeze guards” are around every reception desk.  ID is looked at, not touched.  Parking tickets are not validated – free parking during this time. (Usually $12.00 for day when validated at appointment.)  No clipboard with questions to fill out by pen, those are asked orally or prior to by phone.  Waiting room chairs are spaced 6 feet apart.  Everyone in the building wears a mask.  Some techs wear full PPE.  I went through my day. Elevator and hallway. Dana Building L1  Check-in 1.  blood work and IV in.  2. CT questions and get nasty drink.  Drink over 30 min period.  3.  CT scans.  4. Brain MRI prep (across hall from CT) Put clothes in locker, put on hospital top, pants, socks.  5.  Brain MRI, wearing my mask! (A big first.)  Even the squeeze ball has a disposable cover now. Done, get dressed.  6. Elevator and walkway from Dana to Yawkey 10.  7. Check-in for EKG.  Same COVID-19 screening. 8. Vitals taken, EKG done.  9.  Elevator to Yawkey 2, pharmacy.  Meds are ready! (That means labs were good.) No wait.  10.  Elevator to P5 and car. 11.  Sanitize phone, ID(only things I took) and shoes, change shirt.  Homeward bound, record time!  Dr. Janne and Nurse Dawn call shortly after we reach Maine.  Scans look good!  Labs are good too!  See you in August, call if you need anything.  And so it went. Lady Lorlatinib, my targeted therapy drug, continues to keep the beast controlled (34 months so far).  Our tears are of relief and joy, and maybe a little fatigue.  Mostly joy, thinking of a summer of gardening.

Boston residents were following safety guidelines.  Everyone walking on the street wore a mask even.  It seemed much safer than stopping for gas at a convenience store in Augusta.  Dan was safe, used a disinfecting wipe, sanitized, and we didn’t go near the store.  But people with no masks were streaming in and out one door, in each other’s face and space, handling the door and everything in the store, and … on and on.  All I can say is that we have decided it is solely our responsibility to keep ourselves safe.  As much as we hope others will follow the safety guidelines, we know many are not.  We can be sad, frustrated, bewildered, even angry (not worth my energy) at their behavior, but that won’t keep us safe – we will.  We must.  We have more life to live.

We’ve decided that every day now, during the time of coronavirus, feels like Saturday.  They aren’t Sunday, but they aren’t “work” days.  So they’re all Saturday!  Really though, I know that Monday – Friday our CDC Director, Dr. Shah, will give us the daily update at 2:00 PM.  (I know I can read it on the CDC site earlier, but I feel his presentation is important for Mainers to see.) Every day I hope to hear that no Mainer has died.  I am so saddened at the thought of anyone dying such a difficult death with no family there.  And sad for their families.  I cannot change that.  I can only help the greater situation by keeping myself safe, and asking those I know to do the same.  We do not want to have people die needlessly or to overwhelm our fragile health system. Avoiding outbreaks in nursing homes has to be our collective responsibility, doesn’t it?

Please.  Stay safe.  Wash your hands after going out or bringing things in.   Wear your mask.  Don’t touch your face, even if that mask is itchy.   If not for you, then do it for the grocery clerks and others you come in contact with.  Thank you.  If I see you wearing your mask, I’ll be smiling under mine.

This week we had new friends at camp – a Baltimore Oriole and a cardinal.   Tomorrow is  Saturday! Isn’t every day, except Sunday?  Sunday we will plant our garden, grateful that we’re together for another summer of finding joy in the everyday every day.  Here, at camp with our two spoiled dachshunds and four funny goats.  May you feel as blessed as I do.  Please, always have hope.IMG_2953

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Health Update (Good news)

No changes – that’s good news.  Last week we went for my day of appointments at Dana-Farber Cancer Institute.  If we had known of the COVID-19 outbreak in Boston I think we would have still gone, and in the way we did.  All day we practiced as much “social distancing” as we could, and used hand sanitizer frequently.  DF was already geared up for COVID-19, with doctors being told no business travel, online training, and a noticeable difference in greetings – no handshakes.  At DF they always have to take extra precautions in sanitizing, etc. because of the fragility of the immune systems of their patients.  So, after a very long day of driving (well riding for me) and appointments, I got the news that all remains the same, and picked up my trial medication (lorlatinib – 33 months) for another 12 weeks.

Staying positive is usually easy for me.  I’m definitely a “look on the bright side”, “glass half full”, hope-filled person.  But sometimes this cancer life gets me down, and my logical self says, “Understandably so”.  This blog is intended to share my experience to inform and help others.  It isn’t to paint a rosy picture, but rather an honest one.

I am grieving, as much of our peninsula community is, because this cancer beast caused the death of a beautiful young friend recently.  Inflammatory Breast cancer is another rare cancer, often diagnosed at late stage.  She, too, shared her cancer journey, hoping to inform, educate, and bring hope to others. It is inspirational reading. https://rosannamcfarlandsjourney.blogspot.com

All winter I’ve avoided crowds, not wanting to catch something after being hospitalized in early January. I can’t spend much time outside in the cold as it bothers my breathing.  I went to one basketball game for each of the grandchildren, and that’s pretty much it for large gatherings.  This is because of cancer. In the past I would have attended as many as possible.   So too I missed Rosanna’s Celebration of Life because of cancer.  Yet I was there by “being” with them, listening to songs on her playlist, reading Rosanna’s blog, praying for peace and comfort for her family.

And now, here we are – all of us dealing with a pandemic.  Other than the very real concern  about catching COVID-19 (I’m high risk, with a damaged lung and we are, umm, over 60),we’re much better prepared to work my way through the next months than most, I think. I just filled my trial prescription and won’t have to return until late May.  (Some friends in the cancer world are weighing the pros and cons of going to even necessary appointments.)  We learned how to sanitize everything when living at the Hope Lodge while I was having radiation at DF, so I feel safe in that respect.  We don’t have jobs that we will lose.  (Hoping the lobster industry will get bailed out like the cruise lines will.)  I have put myself under house arrest, no visitors.  (My friend Kathy and I will send each other interesting photos, and fun jokes and quotes.)  I can enjoy the coming of spring, being outside as much as I want. (Pussywillows are out here!)  I have 6 artist trading cards to make for swaps, a junk journal in progress for a friend, and two FB group  monthly art projects to work on.  And, I have Dan, two dachshunds, and four goats for company.  The best!  We have full freezers and cupboards.

I am still ever so grateful for this gift of time that I’ve been given.  All the hardships of living with cancer are just hardships right now, things I must deal with proactively as they come.  Living to find joy in the everyday EVERY day is a gift that I hope all who breathe can understand and enjoy.   I am grateful, too, that so many people are now taking this pandemic seriously.  (I wish our President and his administration had, and would.  But that is now for November.)  I’m grateful to the many front line health care workers.  This is a novel (NEW) virus that obviously spreads easily and rapidly.  Think about your elderly and high risk neighbors and relatives.  (My relatives and neighbors offered help to us and Dan’s dad.) We need to work together to not overwhelm our health care system. Social distancing, washing hands and sanitizing surfaces will help slow the spread.   Enjoy some extra time outside in the spring weather.

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Onward we go! All stable

Last week we did our day (We left home at 6:00 AM, drove to Boston, and reached our hotel at 8:00 PM.) of tests and appointments at Dana-Farber and the news is all good!  The CT scans of my chest and abdomen are unchanged, the brain MRI is unchanged, the EKG was normal, the blood work showed that my additional cholesterol lowering medication is working. High (almost out of control) cholesterol is a medication side effect.  Everything else in my blood work remarkably is still always in the normal range. So has ROS1 hopped in his speedster and departed? Nope.  But he is currently still out of gas, stalled.  Not moving, not growing.  My hero, the Lovely Lady Lorlatinib is the real beast, in all the best ways.  While she may not be so kind to my body, we’ve learned to get along.  And she is strong, keeping her foot on little ROS1.  Doing her job.

Me?  I’m still playing, taking care of my mind and body, and finding joy in the everyday EVERY day, here in our winter home with Dan, our dachshunds and goats.  Filled with gratitude as we near the fourth anniversary of my Stage IV lung cancer diagnosis.  Looking forward to having the children, grandchildren, and Dan’s dad all together over the holidays.  Making memories.

Thank you for all the prayers you say for me and the positive thoughts you send.  I am grateful.  Love to all, from our side of the mountain.

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Free ME from Lung Cancer 5k

Today was a perfect day.  It’s easy to find perfect days when you look for them.  Today it was just there.  Team polepolebreathe.blog participated in the annual (our third) 5K benefiting  Free ME from Lung Cancer.  The weather was beautiful, perfect I think for running, and not cold for those of us cheering on the runners.  There’s a not too serious rivalry between mother and son that’s always entertaining.  My grandson barely beat his mom, but she placed higher in her age group than he.  A tie, I’d say.  As you’ll see in my selfie, I stood tall through it all, feeling blessed to have the team there in my honor.  I’ve been deciding upon a new important goal to strive for – the next thing I want to achieve on this journey.  Staying alive is a good one, but that goes without saying.  My goal?  Next year I hope to participate in the 5K.  If I slow-walked up a small mountain, I can finish a 5K.  And, I know team polepolebreathe.blog will be walking beside me or at the finish line tapping their toes waiting for my arrival. (They are runners after all!)  Join us – I expect it will be a perfect day!

 

 

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

Extraordinary!

IMG_3932Tonight my feet hurt and I don’t mind. Even though I searched all year for the best hiking boots for neuropathic feet, I expected my feet would hurt some.  It was worth it.  My tolerance for what cancer and my meds are doing to my body has certainly changed over the 3.5 years in this journey.  Especially  with the neuropathy, fatigue, and “huffing and puffing”.  Funny what you can get used to. So too has my overall outlook toward expectations of myself.  I’m much more accepting of this change in abilities now, even as I continue to challenge myself to stay strong and healthy, body and mind.

In 2012 when we climbed Mt. Kilimanjaro, we did so because of a documentary in which they said that climbing the tallest freestanding mountain in the world is an extraordinary thing that ordinary people can do.  It is, we are and we did! I’ve never forgotten that concept.

Today I felt like an extraordinary person doing an ordinary (for most people) thing.  The cancer in my body is found in only 1-2% of lung cancer patients.  Remarkable (definition of extraordinary).  I have lived extraordinarily happily for 2.5 years since ROS1 entered my brain meninges.  Remarkable, given the (now ancient, but considered current) statistics on leptomeningeal carcinomatosis.  This morning I took this extraordinary body of mine on a walk through the field and forest to the top of a mountain. Not up “our” side of the mountain.  But up the “other” side of the mountain, the one with views of ocean, ponds, and the village.  Blue Hill Mountain.  Remarkable!

Much thanks to my daughter Mandy for doing this slow walk with me.  It was a beautiful day in every way.  Extraordinary!  See for yourself, and thanks for reading and caring.IMG_3953

 

 

“Scans look good!”

“Stay,” commanded Lady Lorlatinib.  And cancer stayed.  She is mighty, that Lady Lorlatinib.  Once again, after a day of tests and appointments (my sixteenth with Lady Lorlatinib) with the experts at Dana-Farber Cancer Institute, we learned that this miracle med continues to hold her hand (or foot or bum perhaps) over, clamped down on perhaps, the Switch so little ROS1 cancer cannot turn on and hop back into the driver’s seat, racing crazily throughout my body.  She is fearless, Lady Lorlatinib.  She does her job tirelessly, never angrily, but quietly determined as she continuously moves throughout my body to keep cancer in check.  

After 25 months we work well together, my team. I’m referring now to my immediate home team of Dan, Lady Lorlatinib, and me.  Lady Lorlatinib’s job is ever so important.  She meets her goals each day, making her rounds tracking down cancer, saying “No no, not today little ROS1.  Every day is more time for the researchers working to develop and test her successor.  My job of keeping my body healthy so she may do her job seems easy compared to hers.  Instead of being irritated or scared by the sometimes painful sensation of Lady Lorlatinib making her rounds, I can now smile and say, “ Oh, that’s my med doing its job.”  Trade-offs you know.  What price can you put on saving one’s life?  My side effects are definitely manageable. And Dan, he’s the one that gets affected by those side effects the most sometimes I think.  Like the mood swing side effect that perhaps we won’t highlight.  That’s when Dan says, “Must be the medicine working.”  But through it all, I feel loved.  Just because, because we love each other (or is it one another?), never taking the other for granted, always grateful for the gift of time to be together. 

Living scan to scan never gets easy for us.  Even when the clinical trial appointments have stretched from 3 weeks to six, then 9, and now are 12 weeks apart (with labs midway) as mine are.  In reality, cancer is with us all the time.  Because it actually is.  There is no way of knowing  when the cancer that’s a part of me now may overpower Lady Lorlatinib, mighty as she may be. Her special power is not to kill, only to control ROS1 cancer so my cells may live on happily and free. But like any caged animal, little ROS1 seeks to be free.  And little ROS1, he’s a fast driver once he hops in the seat.  The times he has been let loose have been most unpleasant.  So yes, I too must stay vigilant.   

Our trip to Boston Thursday was uneventful – that’s a good thing! Something we do not take for granted.  My appointments began with a blood draw (2 small tubes for my labs and 2 big tubes for the study) and IV put in at Dana-Farber at 8:00 AM.  Then it was over to Brigham and Women’s for CTscans and brain MRI.  Strange thing – at DFCI I only have one bottle of nasty drink before scans, but at Brigham I have two.  Hmm…  After the MRI and IV out, it was back to Dana-Farber for a quick lunch before heading to floor 10.  There I had vitals done (weight, blood pressure, temperature, oxygen saturation), an EKG, and my appointment with the oncologist and clinical trial nurse.  We love them both.  They are caring and competent, two of the best in their professions.  “Scans look good.”  And on we go from there.  The final part of our day at DFCI is to wait for my 12 weeks of my medication.  My prescription cannot be ordered until the scans and MRI are seen, so there is always a bit of a wait.  My backpack filled, we leave the parking garage at 2:30 PM, headed NORTH.  Weary from the physical and emotional work of the day, but relieved and ever so grateful.

Thanks to my sister who took care of the dachshunds and goats this trip, I even got to see my morning sunrise with a little dachshund (depositing some doodoo) in the photo. (I’ll share a different one.)  It’s the only time I’ve left them overnight since my last Dana-Farber appointment, so we’re all getting quite used to Mama being home 24/7.  Spoiled we are, in the best of ways!

Thank you for your prayers and positive thoughts for this journey.  We are grateful for the time we’ve been given and the time we have ahead of us.  And now it is time to pick the tomatoes.  There’s salsa to be made!  Finding joy in the everyday every day.

This wonderful t-shirt was designed by one of our grandsons. The front has two hearts, one with my name and one with my mom’s.  He is our heart hero and understands what it is like to undergo tests, procedures, surgeries, and to work with experts in Boston (next door to my experts).  Beulah’s Babies is the name of our large family team that participated annually in the Komen race (raising funds for breast cancer research) in memory of my mom.  polepolebreathe.blog  – well, you’re here.  And I just love the lungs for me with the pink ribbon for Mama.  Very thoughtful.  Thank you to him.fullsizeoutput_1626

Time for a new goal

Four years ago this spring Dan and I, with my sister and her husband, went on a backcountry backpacking trip into the Grand Canyon.  We each carried about thirty pounds on our backs, hiking from the South Rim into the canyon for a few nights of camping, and hiking back up with slightly lighter packs.  Also four years ago this spring, our granddaughter graduated from high school, ready for college and to become the nurse she’d always wanted to be.

And then(after the distraction of a house fire) came… “Oh shoot.  Metastatic lung cancer? Well this is not good.  But I have things I need to be here for. What’s the plan to keep me here?” This was my thinking, pretty much, upon hearing my diagnosis.  Even though I knew things looked grim, I needed to focus on life.

And I’ve been lucky.  Lucky to have expert care.  Lucky to have a cell fusion ROS1 that researchers have developed targeted therapies to keep “contained” (my term).  Lucky that another drug was available when the cancer found my brain.

But my being here, living, is so much more than just luck.  My outlook on life, my self care, self advocacy, the strength I draw from the love of others, believing in something bigger than myself, the joy I feel in experiencing every small part of each day, all keep me here too.  And goals – things I need to do.  Important things I so want to be here for.  Today I reached one of those goals.  In fact, it is the only tangible, stated goal in those first months  with a date that I hoped to be here for. A date that seemed so far into the future for someone with a terminal illness.  Today that granddaughter who so wanted to be a nurse graduated and I was there. Fancy that. I was there.  Wearing a bracelet that my dad gave to my mom  – I try to wear it to important family events.

And now?  Well, of course I’ve so many reasons I need to live.  I’ve even got a few mountains I want to climb.  I understand a lot more about this cancer journey I’m on than I did so long ago. And I know I’ve more to learn.  I don’t, though, feel a need to set a new goal with a date that I must reach.  If I can live well  surrounded by love for however long I’m here, I’m quite satisfied.  I will live and play and love with those who love me, finding joy in everyday things every day.  And when I turn 99 I shall dye my hair purple.  (If I have hair.)

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.