What can I do?

Like so many others, I’ve felt rather powerless to do much of anything about this situation we all find ourselves in.  That’s a different feeling for me.  Throughout my life, and most certainly throughout my cancer journey, I’ve taken a problem solver approach. I’ve confidently navigated new and uncertain waters in numerous very challenging situations.

So, not liking this extremely unsettled feeling, I decided to work hard on solving this problem of feeling powerless.  I’ve always lived by the “worry about the things you can do something about” and let go of the rest.  I needed to figure out something.  I decided to   actively think about all the things I CAN do and what I’m going to do about them.  It’s a short list.  Hopefully I’ll add to it as we move forward.

  1.  Stay Safely at Home. (This we’ve done since March 8.) I think this is THE most important thing I can do for others, by not putting others at risk, by not taking that much needed bed, by not causing worry to family.
  2. Stay Healthy.  Stress and cancer are closely tied.  A huge part of staying healthy for me is emotional well being.  I can work on this.  Exercise. Meditation. I can work on this.  Finding joy in the everyday every day. (Being with Dan and our animal kids.) I will make sure to do this, it’s served me well.  Interact with and check on others by phone, text, FaceTime, etc.   I can do this.    Art play, reading, handworks.  I will try, as these are sources of joy. Staying healthy is not just for me.  Much like staying home.  A healthy me is good for everyone.
  3. Use resources wisely.  No purchasing any nonessentials. (This isn’t the time for wants.)  Use up that freezer food.  Eat leftovers. Support local businesses when purchasing must be done. (Many have become very accommodating, offering curbside pick up or delivery.  Then, Dan sanitizes everything.) We can do these things.
  4. Stay informed, but don’t overload.  Process and evaluate before sharing with others. Listen to trusted experts. Whenever and however, I will try to advocate for those helpers Mr. Rogers’ mother told him to look for.  Highlight signs of hope and strength in humanity. Remind people of safety measures. Remind myself it is okay to chuckle at those ridiculous memes and jokes. I am trying to do this.
  5. Count my blessings. We are fortunate to not have immediate financial concerns.  My cancer is currently stable. So far our family members are safe.  I am grateful.  While I can’t help homeschool (a source of sadness for me), I can encourage parents to pour their love into their families generously.  And a bonus blessing – before I entered the field of education, my first career was cosmetology.  I can cut Dan’s and my hair!
  6. Stay hopeful. Pray for people to do the right thing to flatten the curve, to make supplies available.  Pray for the caregivers and other essential workers to stay safe. Hope for our world. I do this.

Enough for now.  A good start.

Stay home. Stay safe.  I hope you can find a bit of joy in your everyday every day.  Always have hope.

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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Be courageous!

A conversation I once had about Courage-based and fear-based leadership led to this musing.

In an earlier life I was in a position of leadership.  I think I did it well.  My style was to help others become leaders, work with people, and generally be as inclusive as possible.  That being said, I followed the guidance of my first superintendent and made decisions in three ways as necessary: decisions I must make alone (and accept responsibility for that decision), decisions made with solicited input, and collaborative decisions.  I became quite adept I believe at knowing when each method should be applied, I never shied away from my responsibilities, and whenever possible I used a collaborative process, including those the decision would impact.

I chose to end my administrative career when I came to believe that my leadership was not valued by, or compatible with the board I worked for.  It was a heartbreaking period of time. I sought advice from professionals and friends before deciding my integrity was of more importance than my allegiance to an administrative system in which some members chose to not follow policy, rules, and perhaps law. I’d always told my middle school students that they had a choice to use their leadership skills for positive purpose or not. I was their greatest cheerleader for using their “power” in positive ways.  And then I found myself in a situation where it seemed that the positive purpose was taken from me.

During this time I had the most interesting conversation with a friend, Ralph Chapman, who had studied and developed a thorough examination of Courage-based vs Fear-based leadership. I wish that he would publish a book on the topic.  Our conversation both gave me hope and filled me with deep sadness as I knew I was facing fear-based leadership and was not up for the fight at that moment in time.  I realized then, as I am seeing in our country now, that fear-based leadership is downright scary.  To me it is loud and relentless in such a nasty way, often hate-filled, and “plays” unfairly, with really no regard for the greater good.  

Courage-based leadership is founded in truth, hope, civility, and yes, working for the greater good. (I found this piece on the “greater good” that describes what I mean – Greater Good).  Courage-based leadership has a kind of strength that fear-based can never have.  It will endure. Strength that comes from truth, hope, civility, and working for the greater good.

We need to find that strength, that courage, and lead together, side by side.  We need to join our voices.  Together we can be loud, relentless, and in a positive way.  Uplifting people, not beating them down.  We need to do this now for the children of the world; yours, mine, and everyone’s. We must think beyond ourselves.   This isn’t about “the economy, Stupid”.  It isn’t about our guns (I don’t need a weapon of war for hunting or protection.) It isn’t about praying in school (I’ve never been stopped from praying anywhere.) This is about our world, civility, our children’s future.  Your children, my children, everyone’s children, everywhere.

Always have hope.

A tale of three lives

Musings of living, living with  Stage IV lung cancer, a terminal disease…

I often feel as though I live in three lives or worlds.  There’s my happy life that’s filled with joy, love, family, nature, and crafting.  It’s the one I have some control over.  Then there’s the world around us, the “real” world, the one that is way out of balance and ever so scary.  I always say to not worry about things you can’t do anything about.  I’m worried, and all I know I can do is to vote.  It doesn’t seem like enough.  And finally, there’s  my cancer world.  Right now that world is just plain sad.  Sadder than sad.

I am lucky to be ROS1+ and to be in a clinical trial with a drug that has been keeping my cancer controlled for 2.5 years.  Over the past four years I’ve become friends with many in the lung cancer community.  This life too is filled with love and hope. In the past two weeks several people I know have died or made the choice to begin hospice care.  When over 400 Americans die every day of this disease, I guess it’s not surprising. I’ve not “met” any of them, but we are friends through Facebook, the ROS1ders, our blogs, and advocacy. This is beyond sad.  It is unnecessary .  If lung cancer research was funded at the rate of other cancers, maybe they would still be here, like me, living with lung cancer.  Or, maybe if their PCPs had taken their  symptoms seriously, before the disease metastasized, maybe they would have been able to be cured.  But no.  I hope their transition was peaceful and filled with love.  I grieve for their families, especially their children.  My third world, my cancer life.  Please urge your representatives to work to increase federal lung cancer research funding.

In reality these lives of course intermingle and I must find a balance that works for me.  Just as anyone who needs to deal with the many aspects of their life.  I feel blessed that I’ve been able to simplify my world significantly .  I can’t imagine living with Stage IV cancer and treatments while working and raising young children, but I’ve friends who are.  Please keep them in your thoughts and your prayers.

I continue to play.  Here are some photos of my latest paper bag journal and a page in an ephemera folio I made.  Love to all.

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Lesson learned!

Living  with cancer, even when you’re feeling relatively well, is trickier than I realized.  The good news is that I’m on the mend and back to feeding goats and crafting.

On the very day that I should have been celebrating four years of LIVING with cancer, I found myself in the hospital.  Ugh.  A simple infection turned into a three day stay being observed and cared for in the Special Care Unit.  Huh?!  How could that happen?  Well, I have cancer you see, and even though it is my med that controls the cancer, it is my job to take extraordinary care of my body and mind.  I think I forgot that in all the fun of the holidays, got overtired and kept going as I always had, and the next thing I knew I was sick, really sick.  An ordinary infection that decided to creep into my bloodstream took advantage of my body focusing on making conditions optimal for my med, and being distracted by the holiday festivities.

Two ER trips, CT scans of chest and head, EKG, who knows how many bags of IV fluids, IV antibiotics, heart monitoring, chest x-ray, blood work and more blood work, and on and on. I must say that I got the VIP treatment as a stage IV cancer patient.  I hope that everyone is treated so well.  I even got to practice using my spirometer!  The happy ending to this chapter is that everything is now okay.  I expect it will take me a while to get back to where I was, but I’m confident I will.  I did get some mighty good chicken soup delivered to me, and that sure is good for whatever ails you.  And, now I know.  Just because I’m feeling pretty good, that doesn’t mean I should push myself.  And now Dan can (and did) say, “I told you so!”  (In a very kind and gentle way.) Lesson learned.

So back I go to finding joy in the everyday every day here in our winter home, cozy and warm with Dan and the dachshunds. And, in case you missed it too – I have passed the four year mark of LIVING well with stage IV lung cancer!

When I got back to playing I made this junk journal out of a 6X9″ envelope, scrap paper and cloth, a cereal bag, odds and ends of cardboard, and a few buttons.  Pretty fun!

 

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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ROS1der Research

Dear Friends and Family,
The ROS1ders set a research fundraising goal for this month in honor of Lung Cancer Awareness month.  I hope you can help us reach it. $10.00 is what I’m asking you to contribute.  Four years ago my cough-cough led to a Stage IV lung cancer diagnosis (Jan. 2016). You know my story.  Since then I’ve been on two targeted therapy drugs for ROS1 cancer. Neither FDA approved when I started them. Currently I am in a clinical trial. With each new drug the research scientists are learning more and more about the response to and of the ROS1 fusion. The ROS1ders are donating tumor tissue and more to this research. For me, there is possibly one more drug in trial when ROS1 finds a work-around to my current drug.  For others there isn’t yet another drug.

For you scientists in my “family”, here’s some information on the research. ROS1 PDX Study

Here’s what I’m asking of you – $10.00 If every one of my blog readers and facebook friends and family gave $10. to this research I’d have made a great contribution. I ask this as much for the young moms and dads in our ROS1der group as for myself. Sure, I’d love to stay around to watch the grandkids grow and to get to grow old with Dan is a dream I once took for granted. But there are young people in our group who need to live long enough to see this cancer treated as a managed chronic illness so they can just experience life.

So, $10.00. Please.  Thank you. Thank you for this and all your love, support, well wishes and prayers.  Thank you for reading this and every post.  Here’s the link to my fundraising page.  Corinne’s ROS1 page

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