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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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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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

“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

On to Cycle 35!

My warrior drug, the fair Lady Lorlatinib Lobrena, has proven to be strong. (Yes, she has a new surname. She has been FDA approved to treat ALK+ NSCLC -not ROS1 yet- and that is how she is now introduced.)  After two years she is still able to stay attentive, travel to the far reaches of my body, and sit on ROS1’s brake whenever or wherever he tries to take off in his shiny speedster.  We are filled with gratitude.

I waited to see the official report on my patient portal before writing this.  The report always shows up one week after my daylong appointment.  But at Dana-Farber Cancer Institute we do not need to wait and worry for a week to hear the news.  Here’s how Thursday, June 27 went –

We left home at 4:45 AM for the drive to Boston, arriving in time for Dan to have lunch before my first appointment. And then the fun begins:

1. Blood draw on Yawkey, floor two (two tubes for today, two bigger tubes for trial study)  and IV in (for scans and MRI). When the nurse flushes out the IV, I get that taste in my mouth.  I ask her how it get there so quickly, but she doesn’t really know and marvels at it with me.

2. Over and down to Dana, floor L1 to drink the nasty drink that no longer tastes so nasty – maybe because my taste buds are messed up or maybe I’m used to it now. (I take mine in water, no Crystal light lemonade for me.)

3. Dana L1 for chest CT scan and abdomen CT scan.  Yup, still get that taste in my mouth and warm flush that makes you think you’re peeing.  I ask the tech how that goes from your arm to everywhere else so quickly.  He says he doesn’t really understand it either.

4. Across the hall for brain MRI (45 minutes wearing the hockey mask, in the tube with loud noises surrounding my head) I forget, when the technician flushes my IV, to ask about that taste arriving to my mouth so quickly.  I’m sure this lady would have had an answer, but she was all business and I didn’t want to interrupt her work.  I’ll have to “google” it!  IV out when MRI is finished.

5.  Back to Yawkey, Floor 10 for EKG.  Good thing I remembered to shave my legs this time.  Those sticky things come off easier with no hair.  (Also good thing I’ve got no chest hair!)

6. Vitals taken (Yawkey 10).  No thanks, I don’t need a kilogram to pound conversion.  97% on the O2 – Yes! Way to go little lungs! Radiation fibrosis, partially collapsed lung – you are nothing in this strong body.  Must be all that hill walking to do the goat chores.

7.  Appointment with clinical trial nurse and doctor. (Yawkey 10) This is where we got the great news that Loralatinib is keeping everything stable. Even though we’ve only been there five hours, and did all of the above, they had the results.  My blood work report had even gone to my patient portal already.   With the oncologist, fellow, and nurse, we talk about the test results and the medication side effects. Even though it is the end of their work day, they take the time to ask many questions, listen thoughtfully to my responses, and try to problem-solve any issues (ongoing or new).

8.  Down to Yawkey 2 to pick up prescription.

9. Dan drives us to Seabrook, NH for the night.  It is more than $100. cheaper than staying in the city, and in the summer we can do this whole trip in the daylight.

And so it goes.  Until it doesn’t.  I am very aware of this gift of time we’ve been given.  Many with metastatic cancer do not have a specific gene fusion or mutation that researchers have found and developed a drug to target.   Even when there is a TKI like I am on, the cancer often finds a workaround very quickly.  The toll that the cancer and the medication take on my body is ever-present. We are always in the cancer world where words like “good” and “stable” take on a much greater meaning. But that is just how it is, and we move forward.  Grateful for what we do have, what we can do.  And filled with hope.  Always have hope. There is always much to be hopeful about and for.

The following morning, the day we drove home in a celebratory mood, was a day much like June 28 sixteen years ago when our son and daughter-in-law were married.  A beautiful sunny day, filled with hope for a wonderful future.  So too was it much like a day forty-four years ago.  The day Dan and I officially began our life together.

And now here I am, filled with gratitude and hope – finding joy in the everyday every day with Dan, our family, our two little dachshunds, and of course our goats.

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Keep Reading Please!

Yes, I’m doing well.  Yes, I know I’ve been blasting you with Lung cancer Awareness information.  It’s because I LOVE YOU.  It’s just one month.  Stay with me here.  I’ve something personal to share that you’ve not seen.  Maybe it will impact your mind with visions of the power of hope, faith, and medical research.  It did mine when I recently read it.  It’s my CT scan report from February 25, 2016, the one that accompanies that image of my lungs that I’ve posted.

I didn’t realize it, but I was rapidly declining, dying, in late January  2016.  When I got my diagnosis and we made our way to Dana-Farber, it was a whirlwind of activity to make sure that the cancer in other parts of my body was lung cancer metastasized, and to begin radiation as palliative care in the hope that it would give me some breathing relief.  In the midst of all this, Dan and my sister were staying up with the medical stuff, the “kids” were taking care of things at home, and I was simply working to breathe, heart racing, one breath at a time.  I think I was unaware about my actual state.   How scared Dan must have been, knowing and being alone with me as I worked to breathe, heart racing, one breath at a time.

If you’ve been reading my recent updates, you know things are good.  The tumor in my left lung hilum has been shrunk too small to see, my liver, colon, and brain are stable.  Now read that February 25, 2016 CT scan report and be WOWed like I just was.

February 25, 2016 FINDINGS: 

CHEST: 

There is new complete collapse of the left lung. The primary tumor cannot be distinguished from the surrounding collapsed lung parenchyma. 

The mass displaces the left main pulmonary artery and left pulmonary veins with significant decrease in caliber of the left pulmonary artery. 

There is new large left pleural effusion.

There is a discrete enlarged, enhancing 2.0 x 1.7 cm lymph node posterior to the main pulmonary artery (2:29). There is also 14 x 8 mm subcarinal node. These nodes were previously difficult to distinguish on the noncontrast images from the prior PET/CT.

ABDOMEN:

Significant increase in the right hepatic mass measuring 4.5 x 3.9 cm, previously 1.9 x 1.7 cm (3:26). There is increased enhancement in the surrounding liver parenchyma on the arterial phase images. There are 2 other sub-5 mm hypodense lesions in the segment 6 that are too small to characterize. 

PELVIS: There has been interval increase in the serosal deposit at the rectosigmoid junction in the pelvis measuring  26 x 23 mm(3:69), previously 18 x 15 mm (3:69).

Okay, that’s it.  Were you WOWed reading that, knowing that I’m still here and functioning well three years after that?   I was pretty darned impressed with what medical research has made possible.  A targeted therapy cancer drug stopped the spread of the ROS1 cancer.  When it crept by crizotinib (under the cover of darkness I think!), and found my brain meninges, a second target therapy drug, not even approved yet, was available to me and stopped the spread again.  Hope, faith, and medical research.  Wow.  Research funding is needed.

I’ve been fortunate to be in the right place at the right time while on this cancer journey.  I started treatment in one of the premier cancer treatment centers in the world.  There, I can participate in clinical trials that are only available in a few places in the country,  and unfortunately not accessible to many.  Also, luckily (or thanks to hope, faith, prayers) I’ve met the criteria to enter the clinical trial.  Being healthy in all other ways helps in this.

Four things I hope you’ll take from this post:

  1. Take care of your body, listen to it, and advocate for it.
  2. If you have a cancer diagnosis, find the best treatment available to you.
  3. Always have hope.
  4. RESEARCH FUNDING IS NEEDED.  You can help by advocating, spreading awareness, or donating. Over 400 Americans are dying every day.  Help, please.

If you want to donate to the patient-driven research being conducted on ROS1cancer, here’s my donation page: ROS1 research donation .

That’s my story and I’m sticking to it.  Thanks for reading.  Always have hope.  Today I’m spending the day with one of the grandchildren.  How lucky am I? I say, VERY!  Here, finding joy in the everyday every day.

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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

 

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