A Wrinkle In Time

Have you read it? Did you love it? Author Madeleine L’Engle wrote this engrossing novel, winning the Newbury in 1963. This travel through time and space is a delight and one I intend to return to again…and soon. Reaching deep with themes of death, social conformity, and truth, this children’s chapter book can be a whole new adventure read as an adult. Here’s an interesting take on this read from adults in a Mashable podcast.

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A Wrinkle In Time is the first in the Time Quintet series. Right now, it’s resurgence is notable in relation to the release of the movie in February 2018. Every where I turn I see this classic and what a wonderful thing that is! But what does this have to do with cancer and melanoma?

Scans and Tessering

space

Well, here goes my thoughts on this and cancer patients and caregivers might be most able to relate to this. Time goes fast, time goes slow for all of us. I am learning to live in the moment, the here and now but what happens when you have a full day of appointments, appointments that will give you more time to enjoy life, or bring you to that place of worry when not “passing” the scans? Let me know how you deal with scan days.

My caregiver works with me as I submit to the surrealism of MRI, CT, any various dyes, drugs, and blood letting. Liquid hope is funneled into veins like water through a hose. Like A Wrinkle in Time, there is a sci-fi quality about my Dana Farber day,  lying in tubes hearing thumps or being directed to breathe and not breathe by mechanical audio direction. Big Brother, is that you? Meditation helps to keep me in balance and mindfulness reminds me that this singular moment of pain and discomfort will pass, too.

Each of us has our wrinkle in time, a place between reality and the unknown. Sensations of time and place muddle. Questions of belief and hope are only human, and that’s just fine, to feel human. Characters in the book find their time spent with tesseracts; this time travel is often physically painful and leaves them with anxiety, uncertainty. Sound familiar?

Parallel Universe?

time tunnel

Parallels between A Wrinkle in Time and our own cancer journeys are uncanny. Reality is a fine place though some days we feel as though we are in a time warp, part of a science fiction writing that brings us places we never thought we’d go. Balance tips  as our health tessering brings concerns to the forefront, our future looms closer. Living in the moment skyrockets out of reach as medical melee hurls us toward the future.

Madeleine L’Engle  states that “For me, this book activates both transparency and resistance. It urges us to open ourselves up to those hurts, those tribulations, those disappointments, those doubts, those uncertainties. All of which can be summarized as darkness. It walks us through that pain to a light within ourselves, sparking us to resist all that is not for our good and fight for a better way. Simply put, A Wrinkle in Time offers a glimpse of eternity”.

Not sure where I am with the idea of eternity, but I totally look for the light in each moment, and not the sun light! Find that light within yourselves and fight the cancer battle with courage. Not the journey we chose, but how lucky to still be on the trip! #melanomatheskin #cancer #awrinkleintime #melanoma #Thursdaythoughts

We Can-cer vive!

Janis

 

 

Melanoma Marathon

Now Racing Through My Mind…

is the appointments, no longer in the distance but hurdles to be jumped in the next few days. I honestly, don’t see a finish line in my melanoma path, primarily because beating cancer is now a way of life. This isn’t a knee scrape that we put a band aid on and all is good.

Bottom line, I’m alive and I’m in the care of world class doctors at Dana Farber, and I’m monitored on a regular basis.  Do I want to be under such scrutiny? Hell, yes! While I’d love to have no medical anything in life, I have a ginormous medical life. This is what is keeping me alive and that is how I look at it. This IS life now.

Not The Fast Track

My journey involves traveling. Weighing whether my Stage III metastatic melanoma was worthy of out-of-state cancer treatment with the recurrence, it was obvious that was the track we were on. Road trips add another layer of angst but once you get the routine down its okay.

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A folder includes changes in medicines, printed schedules, and other loose paperwork. The notebook of questions, previous notes, and dates, etc. is essential. Identification and the dreaded health insurance cards are put in my “Maggie Bag”… a gift from a friend that keeps the small essentials together. There’s also a cribbage board in there, pens, chapstick, pain relievers, and special beads from the grandkids.

DSC01632All of this goes in the backpack, along with water bottles, snacks, and perhaps some knitting or reading.  I can’t do books on Dana Farber days as my mind wanders but a good magazine is easier on the brain.  Why the backpack? These days are beyond full so we bring what we need and usually don’t have to return to the parking garage until day’s end.  Wear comfortable walking shoes as procedures are not next door! What works for you on big medical days? I’d love to hear your tips! Please comment.

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Having a caregiver, if possible, is very important. Driving, listening to medical professionals, helping to navigate floors, offices, and labs, taking notes, asking questions, and just offering support in a very anxious situation is incredibly helpful.

Start Up: A Marathon with Hurdles

Dermatologists will examine every dot and spot. Included in the day is: blood work, MRI and CT scans, skin cancer oncologists, and the infusion team if all goes well. Beyond grueling as woven in to this time of poking and prodding, is the nugget all cancer patients keep buried in the back of their thoughts…”will the tests come back clean?”.

Health information is exchanged. I let my medical team know of my fatigue challenges, what aches, any new areas in question. In return, I will get preliminary results from all the testing, and perhaps a green light for infusion of Yervoy (imilimumab), one of the drugs in the clinical trial that I started last Fall.

Train For The Hurdles

Like each day, I take the medical days moment by moment. Each appointment is important, and brings me one step closer to the end-of-the-day infusion that may be enhancing my immune system. Train your brain to seek the positive when possible. How you prepare for the next appointment matters.

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Lead into your hurdles with hope and courage; it makes for a strong landing. Life is different for each of us, and we all have our challenges, our hurdles. Take each one as they come, and work toward a solid landing. Like the track and field runner, practice finding balance and positive head space. Where does your inspiration come from? #rootingforyou #cancer #melanomatheskin #melanoma #yippyforipi #inforthewin #Tuesdaythoughts

We can-cer vive!

Janis

 

Creepers and Stalkers and Trolls, Oh My!

troll-1916370_960_720.jpgWriting today is mostly therapeutic and I apologize in advance for my anxious thoughts. You see, I’m on a clinical trial for metastatic melanoma and due up for my next visit at Dana Farber Cancer Institute. I’ve done well to get on with life, take breaks as needed, and think like my pre-cancer self.

Without Exception

Today the thoughts creep in, a bit more than the usual cancer stuff. It’s always there, the c-word stuff, but I believe I’m exceptional! Exceptional at keeping thoughts at bay, exceptional at ignoring thoughts, and exceptionally exceptional at creating an aura of life is good. Other cancer patients can relate to this!

Three months without my melanoma team, free to push myself through fatigue heavy days and achy joint night. Samplings of joy, love, and life finely sift through my new colander of life. Every moment is rich, alive, and mine for the living.

Whither Shall I Wander?

Prisoner in my own mind, my desire to stay in-the-now wanders down the path of next up. Next up means scans, tests, appointments with oncologists, dermatologists, and the infusion staff. These thoughts are like stalkers in my mind, no longer allowing me the freedom to be.

Plans for the trip to Dana Farber unfold, questions to be asked are written in THE notebook, the medical backpack is unpacked and repacked. Stalker thoughts are unavoidable and while this is not the travel adventure we anticipate, having the blue print in place becomes the norm.

Lost in Thought

Inching closer to the big medical day, it’s more of a challenge to ensure that my health information is current, that all pieces are in place. Racing toward a date that I’d rather avoid, troll-like nasties invade my head space. Ugly, worrisome thoughts greedily take up residence, regardless of how I attempt to evict them.

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Stay the course!

Feelings of balance and ideas of inspiration are mislaid; moments of hope are obscured as medical melee overrules. The unknown of the next medical segment may leave us feeling lost and filled with fear. Forsake those feelings as best you can as solace comes from love and understanding.

In The Know

The best cancer tip I can offer is that being organized helps. It may not sound like much but a medical backpack, a notebook, a caregiver…any or all provide cancer support. Know your schedule and print it. You will learn how to find all the offices, labs, and treatment areas; though it sounds odd, there is comfort in having a routine for your cancer trips.

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Words of encouragement found on my fridge magnet from Dana Farber Cancer Institute.

Days and hours leading up to your next appointments may be fraught with worry. Organize ahead of your appointments, shoo away thoughts of the unknown to make room for thoughts of courage. #braverthanyoubelieve  #melanomatheskin #melanoma #cancer

We can-cervive,

Janis

Birds of a Feather

Cancer patients or is that cancer patience? Ah, I’ve learned a lot about patience as I plod along hoping that each day on this clinical trial brings me closer to healing. Rather than live in fear, I have the belief that in being patient with the immunotherapy drug that potentially treats melanoma and kicks my butt, that I have a chance.

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Hope and inspiration might just come from odd places as we fight cancer and look for balance in our lives. I find that living in the moment is a good place for me to reside! Simple pleasures come and go, as do the trickier moments of scans, tests, and infusions. The natural world bestows the greatest moments of a-ha and reminds me of what really matters.

Life on the Wing

And so it is with the birds. Living where nature abounds, panoramic views gives ample opportunity for viewing. A plethora of shore birds arrive seasonally, while the hardier sparrows, blue jays, and gulls will tough it out with the rest of us year rounders.

Reading Round Robin by Jack Kent is a fun picture book and always a reading rite of Spring  bringing lots of laughs! Three robins nests in the rafters at our house this year and I’ve learned a lot from the National Audubon about the American Robin! What better way to be reminded of the hope of tomorrow than with watching life unfold.

Rule the Roost

Nest #1 appeared in May, and we barely noticed it nicely tucked in to the far end of the deck…not sure how many eggs there were, but if you look closely at the pictures above you will see two young birds. Flights ensued the day after this picture and they were on their own shortly thereafter.

Nest #2
Nest #2

Nest #2 came immediately after #1 on the busy, walkway under our deck. Long strands of grass and nest making material had me keen to this busy pair of robins. Four blue eggs later, we waited. With a 12-14 day incubation that felt far longer, we finally had one robin. I’ve been told that 50% hatch is normal. My grand-girl caught this baby bird on video early on, and I’ve watched this video several times. Life is amazing, right?

To Every Season

Nest #3 is in the middle rafters and contains 3 eggs. It’s another high traffic area so we put a flower planter over it to provide a privacy screen. One robin hatched the other day, one egg is cracked, and one looks to be losing its robin’s egg blue.

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This will be the last of the robins for this year. The weather will cool, the birds will leave, the landscape will change. I’ve taken the time to watch life, to have the patience to let it unfold. Meditation comes in many forms and be sure to take a moment to pause, find courage in your good moments, and let those positive thoughts take flight.

Thank you for signing up for my blog and let me know what you do to find those cancer-free moments. Stay tuned to learn about the empty nests!

#myhusbandwantsthedeckback #melanoma #cancer #Thursdaythoughts #melanomatheskin

We can-cer vive!

Janis

 

Matters of Life and Death…and Books, Of Course!

Immortality is not something I seek. How about you? Life is so amazing, and so challenging, too. It’s that balance thing which we live with every day. Live beyond fear and just live!

Sudden Death

My grandfather was run over and died, a best friend died far too young and wrongfully, a child died in a terrible accident. Unexpected death is tragic, shocking, and contorts the mind to make sense of it. Emotions are exposed, raw and beyond painful. Pieces never quite fit together again. Trauma and tragedy envelope the unexpected loss.

The one thing we know is that there is only one way out of this life. Is death more palatable for those who know they have only so much time? Would my grandfather have played his hand differently if he knew when his last day was? Would you?

A Fate Worse Than Death

Cancer patients live with the fragility of it all; diagnosis, stages, treatments, and even, survival rates. With my melanoma biopsies, options in life changed: is this deadly?, what is the prognosis?, and projects like getting my “things in order” floated through my mind. Some days, meeting an untimely death might sound easier, but then, you still have today!

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I recently read The Time Traveler’s Wife by Audrey Niffenegger. My husband has loved this book for some time; I have at last read it. The beginning was a bit slow and confusing, but I always like to give a book 50-100 pages to develop. And develop it does as Niffenegger creates a story, both intricate and believable. This title offers deep possibilities for discussion.Would I want to know what is ahead?  Would you? Is it better that we don’t know?

In reading this book, it reminded me of Natalie Babbit’s  Tuck Everlasting, a riveting children’s book that explores the idea of living forever. A town wide read for our small Vermont community many years ago, concepts of eternal life, the benefits of NOT living forever, and avoiding the process of aging were exposed with prolific conversation for all ages.  Read it with your child or on your own; maybe it is okay that we have an end to this journey we call life!

“Now Is Eternity;

Now is The Immortal Life” (Richard Jefferies). Find courage in the day that you have; be present now!  Human nature seeks hope:  in life and in living, in treatments and cures, in one day or one year. Courage lies in the belief of a tomorrow. Find your inspiration to keep moving forward and balance that with what you have right now.  Cancer steals time-give yourself what quality you can through meditation, creating positive moments, and making the best of this day. Easier said than done, but make the most of this instant.

On  my reading list- The Immortalists by Chloe Benjamin. Yikes! Another book about living and dying. What if we did know what day we would die? Fascinating to consider, how would you live knowing your exact moment of passing?  This is one of the titles that made Jimmy Fallon’s summer reading list suggestions and subsequent vote. It’s had rave reviews and will offer another window on life/death debates.

Windows into our future may not be the best idea.  These 3 titles glimpse into what “might” be, given that crystal ball. For me, it’s intriguing to play with the possibilities, but I’m a realist. I’m definitely going to read The Immortalists but for now, I intend to pause from ideas of time travel, death, and immortality. It’s not about fear today, it’s just about today, this moment, and about what is. #whatareyoureading #melanomatheskin #melanoma #Tuesdaythoughts #cancer #reading

We can-cer vive!

Janis

Sun Worship, Part II

Or why didn’t I get this as an adult?

An earlier blog speaks of some basic sun worship mistakes from my childhood.  The culture of the times was all about that healthy glow and rich tan skin. Really, there was nothing to get; sun bathing was the norm. Don’t let the guilt get the best of you.  Change begins today, never yesterday.

In my young adult years, say in my 20’s and 30’s, I continued to seek sun whenever possible.  My young family  enjoyed walking, hiking, playing sports,riding bikes, gardening, camping, boating, and best of all, the beach, whether lake or ocean. We were active, happy, and brown.

beauty and light
My new version of light!

Time Out

My son was, and is, feral. He seeks the wild places and “needs” to be outdoors. He was lucky enough to have that most of the time as a child and to create his life around that need as an adult. For our family, outdoor adventure made us feel alive and the best times were “out”.  Dear children-I hope that your past sun history never becomes what mine has.  If I only had known and I hope skin cancer never comes in to your life.

I love being a librarian but sometimes felt work got in the way on a gorgeous summer or winter day, when the natural world beckoned.  I chuckled while doing a mid-February story time about the beach and felt like I was in heaven when I plunked down into my beach chair to read with families.  Summer reading brought the enticement of story time and programs anywhere outside; the pool, the library garden, the bookmobile at the ball field, the free lunch program all lured me in for reading in the great outdoors!

My sisters, brother, and all of our families loved our family reunions.  Sun meant fun as we spent a whole weekend together in the warmer months, traipsing kids, babies, and parents to the beach, on boats, up gorges, to outdoor fairs, through campgrounds.  See the theme in our lives?  Best days were often the maximum time out, just out.

Scoodic Peninsula, Maine!

 

I Took A Walk in the Woods And Came Out Taller Than the Trees (Henry David Thoreau)

I don’t intend to give up on my life alfresco; I intend to be #sunsmart. Wow!  This is a complete lifestyle change.  We know the drill of sunscreen, SPF clothing, and avoiding peak sun times.  There is no way, I repeat NO WAY, I will give up on fresh air and that wonderful feeling it brings.

How do you deal with the sun?  What are you learning to modify your life without giving up your outdoor adventures? I’d love to hear from you because we all have much to learn, not so much to give up. It’s that idea of balance that comes into play so much with all of us, but particularly with cancer patients. It’s easy to tip the scale.

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Enjoy the moonshine!

I am super pleased that I am wrapping my head around getting on and getting out there. Have courage, bring mindfulness into your adventure.  Don’t let melanoma rule.  Find inspiration in the new, different way that you live. Sun safety matters and so does the adventure we call life!

Here’s one easy example-Get out there and enjoy a bit of moonshine this week. Life is full and so is the East coast moon on Thursday! It might be a cloud-covered evening but hey, there’s always tomorrow!  #melanomatheskin #melanoma #thursdaythoughts #melanomamoonshine

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We can-cer vive!

Janis

Seesaw, Or Life in the Balance

yin yang
Putting the pieces together, as represented here, demonstrates well the ongoing search for balance.

Each of us, unique to our own being, and together in the struggle for balance.  Light and dark, as in the traditional yin yang symbol, visually depicts contrary forces.  That symbol, rooted in Chinese philosophy, also represents a wholeness, a coming together of natural opposites. Finding balance, a challenge for all time, is a process, not the end game.

The Tipping Pointbalance stickperson

Life throws things at us. Some things we can see coming and possibly divert, some we create to throw the imbalance the other direction.  What about those life changing tipping points of which we have no control, that appear from nowhere? No control?

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We do have control when blindsided by health issues, tragedy, loss, or whatever tips  balance off kilter. Yes, trauma is debilitating and life altering.  Yes, processing takes time and is so very important. But NO, tipping points don’t have to control our lives but more often are incorporated into the person we are becoming.

(A small aside from me, the librarian!  Have you ever read Malcolm Gladwell?  I love his writing and would suggest The Tipping Point, not about cancer but a great read about pivotal change that might just have a positive outcome!)

Look, Ma, No Hands

Balance evolves, a living organism that we must listen to and nurture throughout our lives. Each day brings the good, the bad, the negative, the positive, the bright, the dark.   Listen closely to yourself as the scale brings you to difficult places and uplifting places.  Learn how you deal with cancer or whatever challenges you face.  Respect your need for time to process; there is a massive internal change taking place. Be patient as the new you comes forth.

Need to cry because you’re terrified of your cancer diagnosis?  Want to do a happy dance, right there in the hospital lobby, because your scan was clear?  Do what works for you to bring you into balance.  Mostly, listen to yourself.  You know where your “feel-better” place lies.  Will a bite of dark chocolate bring a smile to your face?  Do you need to get outside and burn off some bad energy?

Support people are critical as I mentioned in an earlier post, but you know you the best.  There may be days when you don’t even recognize yourself through the cancer haze.  Listen hard, be kind to yourself, and when ready, do what works for you to bring even a bit of balance, in this day, in this moment, right now.

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I’ll share some ideas of ways to find that balance in my blog another day.  Right now, I’m listening to myself. It’s definitely time for a cup of courage (tea)! What are you going to do for you?  #thoughtsforTuesday #melanoma #melanomatheskinwerein  #cancer #lifeisabalance #tuesdaythoughts

We can-cer vive!

Janis