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

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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?

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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

 

 

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

Heir Apparent

Battle Royal

Yes, I sometimes think in dark places.  I mean with metastatic melanoma, scars on my face from excisions, radiation treatment, and now a clinical trial, it’s not all that hard to find your mind go murky. At times, I feel like the next in my family, riddled with cancer, to wear the crown of cancer.

bird crane balearica regulorum royalty free

A person of our American royalty, former First Lady Eleanor Roosevelt is the central figure to a fictional account of her life in the book, White Houses by Amy Bloom. I enjoyed reading this novel that imagines the life between Eleanor and Lorena Hickok though it blurred the lines for me between historical information and an invented story. I devoured the book knowing I prefer more factual portrayals of people of ER’s stature.

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One of my favorite quotes by Eleanor Roosevelt hangs on my fridge!

 

Royal Treatment

Why mention White Houses? Author Amy Bloom uses a description about saplings in the woods (forgive me for not having the wording handy). In comparing shaded saplings to people, the author relates the smaller trees will be stunted by those towering trees that relish the canopy, thriving on the light well fought for by competing trees.

An analogy that works eloquently for those of us with skin cancer. Do we now hide in the recesses of  dingy corners of our world? Should we resign ourselves to a tenebrous existence far from the beckoning sun? Are we relegated to be lowly saplings who never benefit from the light?

Those that reach for the light grow!

Hell, no! Shadowy thoughts like that are the last thing we need. Acknowledge those cancer moments, grab your cancer crown (a large brimmed hat for me!) and sun screen, and seek the light, seek the positive.

Use sun-safe habits and your #sunsmarts. Enjoy the things you love and keep solar mindfulness with you at all times. Take your vitamin D and find the courage to get out there! Light is metaphorical for illuminating the positive and also offers physical improvement when sensibly enjoyed. That doesn’t mean ignore your doctors!

Some People are…Well…A Royal Pain

Where did the light come for this blog? I just read a blog post where the writer stated we need direct sun and that sun screen is not good for us. Really? I know that the sun is essential to life; I get that in a big way, but really, no sun safety? Yes, that statement angers me because I GO TO THE DOCTORS, I GO THROUGH THE PAIN, I FIGHT FOR MY LIFE. I commented on that blog! The response explained that melanoma is a blessing. Really? No words here.

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Stand Tall!

Reach for the light every day. Open your mind, open your heart, and you will leave the gloomy thoughts and the darkness in the undergrowth. Don’t read trivial stuff. Do what you love and grow strong; become the tall tree.  #melanomatheskin #cancer #melanoma #readingmatters #becomethetalltree

We can-cer vive!

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

 

Fear and Reading-“The Emperor of All Maladies”

Warning: Dangerous Curve Ahead

Librarian and literacy advocate-gotta love a career like that. I find my melanoma takes away from what I want to do, how I thought my life played out. It’s changed my course in life and how dare those cancer cells take my greatest passions from me. Okay, I said it. Now, it’s time to get on with the life I never envisioned! Here’s one great book and one tiny, little reason not to read it, FEAR!

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Many of us get thrown curves in life and the big one for me right now happens to be cancer. I’ve always loved my profession and especially, the possibilities for connecting people with books, materials, resources, and education to empower them.  So it’s bound to overflow into my blog!

Avenue of Escape

My librarian/mentor and best bud long ago taught me that quite often the kids reading sports books are not the ones out playing sports…they just want to read about it.  The kids reading about abuse and tough family situations are quite often not living that at home, they just want to read about.  Often, our reading is about escape, about learning about what we don’t experience. We might just learn something!

I want to share a book about cancer. Now, why would we cancer patients want to read The Emperor of All Maladies by Siddhartha Mukherjee? Initially, I had no idea it was about cancer and as a lover of non-fiction (okay, I confess…I am a multi-genre lover who keeps multiple titles on the nightstand!), I made a mental note years ago that I wanted to check out that book some day.

In 2011, it won the Pulitzer Prize which reminded me again that someday I would read it. Then a few years later, I learned the subtitle :A Biography of Cancer. Shit! How does one read this book when already drowning in words like biopsy, cancer diagnosis, treatment, stress..that list is long so just suffice to say c-word stuff?

Mukherjee’s book was first published in 2010, so by 2017 with another melanoma diagnosis, it was time. I mean, the book’s information was no longer hot off the press and I knew I wanted to read it. Fear, fear, fear that it would bring me to places I didn’t want to go had held me back.

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The Road is Long

Goodreads.com offers relevant reviews and varied thoughts on this book, but I’d like to share a few thoughts as well. Non-fiction, in the contemporary publishing market, tends to weave facts with interesting story lines. The Emperor of All Maladies:A Biography of Cancer traces cancer from thousands of years ago to the 21st century, interweaving science, history, and human experience. Cancer has not taken the express lane!

Rather than feeling chaffed reading this title, I felt soothed. The Dana Farber Cancer Institute connection added another layer of confidence with my already swelling assurance of my skin cancer team. Secondly, I gained tremendous respect for the scientists, oncologists, and other professionals who have led and continue to advance toward cures; this journey has been far longer than I realized.

 

Lastly (though I could go on and on about this book!), it humbled me. People talk of the cancer club, yet this title manifests how each cancer patient has their own brave battle, and that together each of our unique roads leads forward together, be it caregiver,  healthcare staff, or patients. Thank you to ALL of those who came before us on this journey.

Fellow blogger and cancer patient, Melanoma in Me, writes about this amazing book and an opportunity to meet the author. I’ve met many authors in my life and hearing Mukherjee discuss cancer and what’s next would be even more inspirational. I hope to have that opportunity knowing how quickly the knowledge-base about cancer has expanded in the last decade.

In reading The Emperor of All Maladies, I am reminded that knowledge breaks down fear. Fear is a detour, a roadblock, and this post, a small example of how to leave it behind before it leaves you behind. Try this book, and let me know what you think! Thanks for signing up for my blog, too! #nofear #readingrisk #cancer #mindfulness #melanomatheskin #melanoma

We Can-cer vive!

Janis

PS I just realized PBS made a documentary (Ken Burns) about this in 2015 so I will watch it perhaps someday!

I Scream, You Scream

Get Out!

National Ice Cream Day is celebrated annually the 3rd Sunday of July.  Perfect time to go out and have an ice cream! For those of you who are lactose intolerant, this post may not interest you, and for those who have skin cancer and fear the sun, I say, get out!

It’s tricky to have melanoma or other skin cancers because, well the sun is with us every day. Does it make you want to scream, having the deadly melanoma and having to be mindful of the sun? It’s about new sun-safe habits and creating easy routines.

Everyone should be using sunscreen, every day. Do you struggle with being outside? Does fear keep you from living in the moment? How many of your friends go with the belief that skin cancer won’t happen to them?

#EverydayisaSUNday

Recently handed an ad from the American Society for Dermatlogic Surgery, I was reminded just how much sunscreen matters. While I don’t know the ASDS personally,  promotion of sun safety is so important and I was pleased to see their reminder.

The sun is with us every day. Every, every, every day! With gray and dreary weather that solar reach is coming down to earth. Late in the day sunset viewing those rays are streaming at you. Middle of a cold winter day out snowshoeing that reflection off the snow is…well, a killer actually.

Skin cancer can make one very sun shy.  Don’t let melanoma and other skin cancers push you into the corner. You don’t need to live life in the dark either. Create sun-safe habits and have the courage to get out there and live your life! Wear sunscreen, clothing, and bring along your umbrella.

Favor a Flavor?

Oh, the options! My grandgirl and I have a few favorites at the top of our list though we love it all! Sugar cone and the very smallest size, because in America smallest still is a super size! Creamees just don’t cut it for us and we skip the condiments like sprinkles. It’s really about going out for an ice cream…together! Let’s talk ice cream..what’s your scoop?

And hey, did you see this?  U.S News has a listing of some free and discounted options for National Ice Cream Day. I think I might just google some ice cream shoppes local to me and get this mission going! I mean, National Ice Cream Day may be a gimmick and come only one day a year, but hey, why not? (I’ll write about sunscreen “flavors” another day).

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None of us knows what lies ahead in life (except death). Gather up that weary immunotherapy body or whatever your cancer is giving you today. Go out for National Ice Cream Day this Sunday.  Take a hike. Swim in the ocean. Mindfulness of sun days matters as does mindfulness of each and every day.  This day is the one that you have so put on your sunscreen and lather up with hope.

#EverydayisaSUNday #Nationalicecreamday #takeahike #melanomatheskin #melanoma #sunsmarts #favoriteflavor

We can-cer vive!

Janis

Seeing Spots

In the Beginning

Start, stop, start, stop. I began this blog post two months ago and basically, haven’t been able to get past the title. Melanoma is a game changer for sure. All types of skin cancer are formidable foes, and how do you do skin checks without letting it rule your life and your mind? I’m delving in to a bit of my cancer history here…the beginning and a tougher place to bring myself than I realized.

My first diagnosis was in 2015, after noticing and watching an area on my left cheek for a few months. It didn’t look particularly “stand-out, hey I’m different” and comparing my spot with online photos, well, don’t bother is my advice. Use your sunsmarts and get screened for anything worrisome; digital diagnosis is virtual, not real.

Another day, I’ll talk more about surgeries, treatments, radiation, clinical trials, and all that “fun” that is how we live now.  Today’s blog is about looking for unusual spots. That little area on my cheek wasn’t all that different than all the other spots. I mean, we all have our spots, right?

For me, the area felt different to the touch, an internal hmmmm that left me wondering “IF” something was going on. Going for a routine physical, I mentioned it to my doctor.  She felt it was nothing but worthy of a biopsy, so off to the local dermatologist I went.

X Marks the Spot

The call, the one we never want to get, never ever…came less than two weeks after the punch biopsy. The doctor, grave and concerned, informed me of the melanoma and that he could set up appointments with an oncologist and surgeon.

Yes, that was the start of my journey with cancer. We cancer patients all have our stories, our moment of truth, that one conversation.  The c-word that turns so many of our worlds upside down. Health information came from all directions. Phone calls and appointments were quickly scheduled. The dreaded health insurance queries ensued.

A lifetime of sun was now encapsulated in a tiny spot in my left cheek or possibly racing through my body; the belief that I would never have skin cancer stared me down in the mirror every day with a small,  purplish spot. Grateful that the carcinoma was right there staring at me, I wonder if I would have found it if it had been in a less obvious place?

Learning the Alphabet

A basic guideline, the Melanoma Research Foundation lists the ABCDE’s of melanoma with photos. Again, I would note this is not the gospel of diagnosis.  My spot looked nothing like these photos and only minor areas of note in the listing of ABCDE’s:

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I do think the guideline is just that, a guide to start your understanding of skin cancer. Cancer tips can be sketchy so go with your gut. The one thing I would note is that my first spot was purple, just a faint purple color-enough so that I noticed it was not like the freckles, skin spots, or scars. So the letter C was relevant for me.

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In hindsight, the letter C for Color and the letter E for Evolving were relevant with my first melanoma diagnosis. However, I wasn’t even aware of the guidelines.

The letter E, evolving, became present over time.  It was very slight but my spot was changing. I noticed it sometimes, again, a slight feeling in my cheek. Indescribable, something just felt different.

Blind Spot

Because I was always healthy and had no concerns. I was quite sure I didn’t have skin cancer; it really wasn’t possible. Until, it all was possible and not only did I have skin cancer, I had the deadly kind, melanoma. Courage came later.

Have a spot that looks different to you? Know that you have skin damage? Have you spent a lot of time outside? Get a skin check done by a dermatologist. Many people do this annually now. Don’t wait because melanoma is not just on the surface; it buries deeply into your tissue.  The deeper the cancer, the more challenging the treatment.

Spot On!

Ending on a positive note, a dear friend and another freckle face, was very concerned and supportive at my first diagnosis. As a retired nurse, it also turned out she was a bit concerned about her own bespeckled self. In talking one day, she confessed, “I’m looking at every friggin’ freckle and mole I have, thanks to you,  Janis. That’s a lot of work for a retired person!” Gotta love her!

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Yes, give those spots due diligence and #getnaked.  Screening and early detection matter for all skin types. Leave paranoia behind and enjoy life sensibly. I’d love to hear how often you do skin checks and what you use as your guide? #melanoma #melanomatheskin #cancer

We can-cer vive!

Janis