Still playing!

IMG_1845I’m quite certain it is impossible for me to describe how very lucky, fortunate, blessed (choose your adjective) I feel to be here on earth.  This winter, despite (or because of) “everything”, has been one of the most wonderful, wonder-filled times of my life.

“Why?” you might ask.  “Have you traveled to exotic places?” No, I did that in my other life.  “Maybe you swam with the dolphins?”  Nope, other life too.  “I know, you rescued a dachshund to add to your family.”  Other life and they’re still living the good life, one now elderly with her heart condition that requires three medications, twice daily as she reminds me.  “Well, did you get to watch the birth of a grandchild?”  Other life and one is now 22!  And me, still just a kid myself!

This winter for the first time in either life, Dan and I have both been home together most of the time every day, the exceptions being his coaching and my one (just one all winter!) trip to Boston for my clinical trial appointment.  This winter I’ve been able to get a glimpse of what our retirement might have looked like if our other life had played out as “planned”. While neither of us have been physically able (Dan due to surgery, me -due to the beast) to climb mountains together or even to snowshoe up “our” side of the mountain, we’ve had a wonderful time, simply being.  Being together.

I’ve had times when I’ve struggled about the toll the side effects have on my physical self.     Treatment, both radiation and powerful targeted therapy drugs, have had immediate and long term effects that for me are just plain hard, yet tolerable. Some do not get the chance to be given a new life as I have.  I am grateful. I embrace this drug in my brain.  I hope someday lung cancer patients will be able to have treatments that both work and have fewer, less harsh side effects.  But for now I understand that treatment is why I have this wonderful new life.   I choose life.  I cherish this new life.  And I continue to work with the treatment to keep my physical self as healthy and strong as I can.

I love this pace of no hurries, no worries we’ve grown into this winter.  It allows me to observe the world around me, truly and thoroughly.  Whether it is the birds and squirrels at the feeders, the deer passing through the backyard, the little ermine that hides (lives?) in the brush pile, the goats and dachshunds that provide endless hours of entertainment, the grandchildren, hearing my father-in-law’s stories,  the basketball stories and passion of Dan the coach, the discovery of playing with mixed media art, reading or listening to books (The Moth Snowstorm and Becoming, field guides, and more) the forsythia brought in for a spring preview, or the subtle changes of the landscape, it all fills me with wonder.  Wonderful.  Wonder-filled.  Fulfilled. Full.  A full life, well-lived.   Simple, slow-paced, yet busy enough.  One day at a time, waking each morning knowing I’ll find joy in our everyday activities, surrounded by everything and everyone we love.

Still playing, just differently.  Here’s a glimpse:

 

 

 

 

 

Hopeful Health Update!

“Everything looks good!” said the “new to me” oncologist.  “You’ve been doing well for a LONG time.”  Okay friend, knock on wood, find a four leaf clover, and thank God when you make a statement like that.  It IS the truth.  I HAVE been doing very well on Lorlatinib.  In metastatic cancer world, it HAS been a long time. 546 days on Loralatinib  on that appointment day.  I am grateful to the doctors, nurses, researchers, and all who send positive energy and prayers.  Hope, I always have hope.

My appointment was great!  This doctor was very interested in my health and in the work of the ROS1ders.  He raved about how impressed he is with the ROS1ders advocacy work.  And, it is always nice to see Dawn, the clinical trial nurse.

It was a different trip though because Dan couldn’t go.  He recently had a total hip replacement and no long rides for him just now.  My sister drove me, while the “children” helped Dan with chores, etc.  My sister began this Dana-Farber relationship with us nearly three years ago, traveling with us as a note-taker and support when we first started our cancer journey.  I’m glad she was able to hear, “Everything looks good!”  Even my labs were all good.

So.  Well, my 3 year “cancerversary” just passed.  While I seldom really stop thinking about how fragile this string I’m hanging onto is, I think we’ve made a very wonderful new life for ourselves. And, this winter for the very first time ever, we are both at home every day.  And yes, it IS a good thing we love each other.  We are loving being together.  I’ve been busy caring for the goats and dogs, filling the wood stove, and keeping the ice and snow off the doorstep.

A new hobby is is also keeping me busy and happy.  I’ve spent my adult life simply knowing I couldn’t draw, paint, etc.  While I see myself as creative minded, I don’t see myself as an artist for sure.  Well, to my surprise – like most things – if you put your mind to it and practice, even I can learn to draw, paint, make fun art with mixed media, and Zentangle.  Yes, it’s true.  I’m having great fun – not just crafting, but learning to draw, learning to use watercolors, learning lots of mixed media techniques.  And, I’m no longer afraid to pick up a pen and use it for something other than writing.  Who knew this would be so much fun.  I don’t even mind sharing it, no matter what it looks like.  I’m having fun and learning, while playing and practicing.  Seems crazy, but it’s true.

One more fun thing has happened.  Years ago, as part of a senior thesis project at Goddard College, I wrote a children’s story.  At the time Dan really wanted me to see if I could get it published, but the one place I sent it to rejected it.  I tucked it away for the someday grandkids.  Well, welcome to the world of self-publishing!  I’ve worked with a publishing company and illustrator, and will soon be the published author of a children’s book.  (Further details when it actually comes out!)  I wasn’t sure I’d live to see it done.  Seriously.  In May, it was to take 3 months, and here we are in January.  Long time for someone living with metastatic lung cancer.   Looking hopeful though.  Good thing.  It’s on my life list to get done.  (You can smile now.  I am.)

Finally, if all goes well I won’t need to go to Boston until early April.  Twelve weeks!  You can find me here in our winter home on the mountainside, finding joy in the everyday every day. (It’s easy to do!)  Feeling grateful, joyful, peaceful, and as always – hopeful.

fullsizeoutput_11c9.jpeg

 

Another year

Another year gone by.  That’s how many people say it I think.  Another year.  Me?  ANOTHER YEAR!!! YES!  We did it!  I’m really here to see ANOTHER YEAR begin!!! Here I am, LIVING with metastatic (here, there, everywhere) lung cancer. Since that awful diagnosis I’ve celebrated not one, not two, but three, yes THREE New Years.  How amazing is that?! Well, I can tell you.  Very.  Very amazing.

New Year’s Eve 2012, Moshi, Tanzania, Africa.  New Year’s Eve 2012, Amsterdam, Netherlands, Europe.  New Year’s Eve 2012, Massachusetts, United States, North America.  That was an amazing New Year’s Eve for sure.  Got on a plane in Africa on New Year’s Eve, landed in Europe for another flight still New Year’s Eve, and finally made it to Boston, MA in the United States on New Year’s Eve.  Three continents.  Not likely to have another New Year’s Eve like that one.  If our flight had not been cancelled the day before we wouldn’t have had that one.  Lucky I guess.  Not that we felt that way at the time.  But it is kinda cool to say we celebrated New Year’s Eve in/on three continents.

Lucky we were in 2012 and lucky we are today.  Blessed.  Fortunate.  Grateful.  Joyful.  Loved. Content. Hopeful. Those are some of my words I carry with me from 2018 into 2019.  They may sound “soft”, yet they come from, and give to me, strength, courage, and peace.  I am excited to see what things our family will celebrate in 2019.  Graduations, family gatherings and outings.  Every day a gift.  I know Dan and I have much to look forward to, beginning with our winter on the mountainside, cozy in our home with the three little dachshunds, and the goats nearby in their little barn.

May 2019 be a year of joy and health for you.

Another year!

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.

IMG_0979.jpg

 

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.

IMG_1106

Good news Health Update

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

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

IMG_2968 (1)

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

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

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

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

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