6 Suggestions for Giving Tuesday

AWOL

I know, I’ve been absent for a while…longer than I want to consider

colorful costume monster mask
Melting down around 5 pm every day!

It’s been a tough run with Yervoy for the clinical trial I’m on. For whatever reason, my energy levels, which are not good, are less than non-existent. I’m putting up a great front though feel like the melting witch on the inside!

Immunotherapy would make me believe I have a super immune system, charging those T-cells to the infinite degree. I guess not because I’m coming down with a cold. Totally was hoping I was invincible, but hey, it’s good to know I’m still human even with all these chemicals racing to catch and kill cancer cells.

Upcycling Life

Enough of that. I’ve always been big on giving back, paying forward, or upcycling life. There, does that cover all the current lingo?!!!! Caring about others needs to be part of our lives every day. Kindness rules and with the crazy, scary world we live in, I truly believe that our goodness and love can win out. So do it every day, every way.

thank you heart text
Doing good for others brings joy to our lives.

Today is Giving Tuesday. Being the draggy person I am, I’m thinking about my donation giving for the holidays but might not get to it today. That’s okay. If you are able, do it! I actually give to two groups for our Moms; you see our Moms don’t need a lot and are incredibly hard to shop for anyway. THE Moms love donations that we make to either Camp Sunshine or the Children’s Literacy Foundation. Vicariously, they too, are paying it forward.

I’ve created a small list of organizations that are near and dear to me. I have connections with each of them so feel free to ask me about them if you want to hear from a person on what they do. I love your comments! I share this with you as I’m not working much these days and hope that you might just find one that works for you. My favs include:

  1. Camp Sunshine -an amazing retreat for families with terminally ill children offering smiles and love
  2. Children’s Literacy Foundation -an amazing literacy foundation that encourages the love of reading with children
  3. Dana Farber Cancer Institute -a world class medical facility that also cares for children with cancer
  4. Hope Lodge, Burlington, VT -one of many Hope Lodge housing options around the U.S. for cancer patients
  5. Hospitality Homes -a Boston-based program that offers housing to those requiring medical treatment
  6. Your local library -what a great way to keep on giving when you donate to your library and ask that it be used for books…it keeps on giving!

And please do ask about my connection with each of these worthy organizations!

Giving Life, An Attitude of Gratitude

If you are thinking about donating money or time somewhere, hooray to you! Money may seem a cold, callous gift but it’s not when you consider how costly medical situations can be. Cancer patients hold their heads high, but whoa, the financial strain is tough! Let me know of your favorite places to volunteer or donate money. Positive begets positive in this life! Inspiration comes in giving!

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We all do what we can. If your Giving Tuesday is as simple as opening a door, calling a friend, or smiling as you walk past a stranger, it’s all important to making this world a better place. And then make it a Giving Week which leads to a Giving Month which leads to a Giving Life. #melanoma #cancer #GivingTuesday #melanomatheskin #GivingLife #Wecancervive #volunteer #upcycling #LoveTrumpsHate

We can-cer vive!

Janis

Veteran’s Day and Military Brats

Yes, I’m one of those military brats. Lots of memories I could share but mostly today is a day to remember the veterans. My father, a young World War II vet rarely spoke of his years overseas. I believe it to be a wild time for a young aircrewman, as well as a life-threatening time for a well-trained partner to the pilot in two-seater. He and his pilot, an intricate team, working closely both physically and mentally to carry out missions, to come out alive.

Sounds of Silence Or What I Missed in the Quiet

Yikes! Dad was a gunner in that war. I don’t remember when I first learned of this but I know it confused me. How could this sweet, funny, social, loving father have fought in the war, any war? My father rarely spoke of his years overseas so it took me a long time to understand.

You see, being a military brat for me was just:

  • moving ( a lot)
  • learning how to make friends and build community
  • knowing that Dad traveled often and around the globe
  • thinking of my father as a teacher; he taught air radio technology and navigation to young recruits and “weekend warriors”
  • realizing weekends with my Dad were rare and special

These were all things that happened AFTER his war years. For a long time, I didn’t even realize that my Dad was an unsung American war hero. Communication was not his strong suit and somehow, being a Navy brat meant going to strange Christmas parties on base, emphasis on NOT living on base, and wondering if Dad was on board the plane that flew so low and made the house shake.  I had little toys I packed in his suitcase so he would find my treasures when away. Wars were not part of my childhood understanding.

Lose Lips Sink Ships

You see I was a peace loving child of the 60’s, distraught to grow beyond the naivety of childhood and being to understand the atrocities of war through the black and white body bags of tv and Vietnam. Is this when I began to question what my father did in the war? Honestly, I have no recollection when I saw glimmers of what my father had sacrificed. Perhaps it was just the knowledge that her rarely spoke of his years overseas that said so very, very much.

I remember the carrier reunions of my youth, wild with conversation between the vets and more than a few drinks consumed, we kids ran wild, missing an opportunity to learn from the war discussions. I never learned anything at these parties, excepting perhaps that these veterans had much joy and sorrow shared, relationships like no other.

Over the years, my father began to share snippets about his active duty stints on the Essex, the Ranger, and the Randolph. Choosing never to climb the ranks, this veteran was in the cockpit, proud to be one of the best aircrew “white hats”. Different ships meant different pilots, training and building the comaraderie that would last a life time, the brotherhood of naval aviators.

My father felt life aboard the wartime carriers was “pretty good”.  As an enlisted aircrew, he didn’t have to stand watch, was paid $60-$90 extra a month for hazardous duty (in 1942), and was primarily off-duty when not on a mission. This all assuming you survived the rigors of war.

Heroes Among Us

My father was one of the lucky ones and fifty years after the war, he was recognized, along with 400 other vets and their wives, as the Yorktown dedicated an Enlisted Combat Aircrew Roll of Honor. This is not just enlisted crew from one war, but from several. If you are an American history buff, a visit to Patriot Point is well advised.

My siblings and I were included in this week of celebration, along with our parents, wartime friends of my father, and the one pilot of his that was still living. My father walked with a cane and oxygen down that aisle to see his engraved name along with others on the honor roll, tears streaming down his cheeks. Many of his buddies never lived for such an honor.

I know where my bravery and courage comes from and this pivotal moment with my father,  I understood. I truly understood. Yes, I’m still a peace-nic and believe in avoiding war at all costs. But in those silent tears, I felt the patriotism, the sorrow, the pain, the loss that was rarely mentioned.

My father protected our country, our rights, our freedoms. In humbly doing what he felt was right, my father quietly protected his family from the atrocities of war. My father believed we didn’t need to know the horror he lived with. At the ceremony, a fellow crewman,  Retired Captain Schultz stated the often heard phrase “Freedom is not free”.  I finally understood.

A plethora of medals, including two Distinguished Flying Crosses, were no longer hidden in his bureau. His flight logs and training maneuvers are kept at my brother’s, who has embraced my father’s military history. My brother recently revisited the Yorktown, a smaller display over the years, but a reminder of what our veterans sacrifice. Much of our father’s history went with him when he passed but we thank him for always protecting US.

Thank you all and may peace be with us all.

#VeteransDay #ThankYouVeterans #melanomatheskin #Freedomisnotfree

We can-cer vive,

Janis

PS The librarian in me just wants to mention a book that includes my father in it and is a strong depiction of airstrikes in the Pacific during World War II, Crommelin’s Thunderbirds by Lt. Cdr. Roy W. Bruce and Lt. Cdr. Charles R. Leonard

 

Vote Early, Vote Often

***I’ve decided to post this again. Infusion last week, fatigue this week. Please vote, whatever you believe in! It’s how democracy works! Elections matter!

Feeling the Blow

I’m already breaking a political promise; I vowed this blog wouldn’t get into my political beliefs. So like all those running for office, not all promises are kept! You see sometimes life changes our platforms, whether we approve or not! I’ve voted and hope you participate on November 6th if not before. I’d love to hear your thoughts on politics, voting, or cancer. Comments are encouraged and discussion most welcome!

boxer

After years of great health, I was dealt the first melanoma blow in 2015.  Determined not to have it be a knock out, I came back fighting. Until things didn’t feel right to me again, a facial excision left an area tender; my old boxing injury I joked. Except  something wasn’t right and I needed to believe in myself, to fight.

The Main Event (Round Two)

ring 2

Doctors didn’t believe me and so time went by; we cancer patients have a love-hate relationship with time. (We want more of it, though hate it when it means waiting on test results). Finally, I requested a biopsy; metastatic melanoma again and recommendations that we now go to the medical epi-center of Boston, Dana Farber Cancer Institute being our choice. I was in the big ring now.

I’ve mentioned my cancer before and will again, but not in the context of politics. I could be the poster child for pre-existing conditions. My skin, like yours, holds onto its history; its damage, whether it be sun or other sources is pre-existing. My metastatic melanoma could have happened as a child, or just a few years ago. It’s been two hard punches to the left side of my face.

So, my pre-existing condition just may have been lurking for years, waiting for the optimum conditions to let cancer, medical diagnosis, doctors and dermatologists, become the new normal in my life. I’ve always listened to my physical being, but we cancer patients feel we’re caught cold when going another round. Pre-existing, why yes I am!

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Saved By The Bell

Think pre-existing conditions aren’t relevant to you? Yes, I gratefully thought that previous to 2015. I agree that we want to cultivate hope and inspiration, not worry about the what-ifs that can drag us down with a one-two punch.  And any given day, you may be in a bout for your life, for your medical treatment.

Insurance discussion is a constant in our home, at our table now. I’m the lucky one because we have insurance to cover my clinical trial drug for now. At some point, we are going to make a decision on insurance expenses and/or treatment. Decisions are regularly made by people who can’t afford insurance premiums. Long before my health issues, I was deeply affected by those I love making tough life choices based on medical expense.

We Are The Champions

So, yeah! Vote early, vote often, but whatever you do vote! We’ve all fallen to the canvas a few times, all taken a few sucker punches. Life is like that. However you vote, at least you’re making a decision to participate, to get up and fight for what you believe in. An outcome, the decision, will be heard; if you vote, you’ve put it out there, given it your best shot!

Contenders, all of us, with our concerns and passions. Believe in yourself, have courage, and stay in the ring. There has never been a more important time to fill out a ballot. Voting is super easy and vitally important. I’ve taken to voting absentee; bringing the ballot home to research the questions and candidates more closely. Vote, vote, vote for what matters to you on November 6th (and wear your sunscreen;).

Next time, I promise not to talk politics. “And if you believe that, I’ve got a bridge…”!

#melanomatheskin #vote #melanoma #cancer #sunsavvy365 #Tuesdaythoughts #election

We can-cer vive!

Janis

Tolkinesque Cancer Trek within The Great American Read

ring

Passion Between the Pages

Are you loving the PBS Great American Read? I am. All right, so I forgot to watch last Tuesday at  8 pm but other than that I’m loving it! Gazillions of book talks, promotions, displays, and story times later in my professional life, this librarian is truly loving this event.

Why you ask? I mean, there’s not a lot of bling, blang, or blood, so what’s so enchanting? How often do we have people read us excerpts, promote the words and authors they love, and remind us to read those books on “the someday list”? Interviewees are enthralled with the books they’ve read or voted for on the PBS list of 100; in hearing their thoughts, I’m excited about what to read next.

Inspiration comes from that which we know soothes our soul, and in reading books, that inspiration also comes from a story unfolding, though we don’t know where the reading will lead us. It’s a gamble as to whether the story will take us places we want to go. I’d love to hear your favorite book of all time and where it takes you!

Really? Another Reading List?

owen

The first book on the PBS list that I’m reading is A Prayer for Owen Meany which I’ve picked up from the library. Author John Irving completely captivated me with Cider House Rules so this is the next of his I’ve wanted to read. It’s proving to be a challenge as the clinical trial I’m on for metastatic melanoma leaves me too tired to read! With over 500 pages, I am laughing at myself with the 5 pages or so I read a night!!!!

BUT (that’s a big but!), the writing is rich, the characters I am getting to know intimately, and I’m finding the writing takes me to another time, another place. What better way to escape the world of cancer treatment, than to let the words take me away. Besides,  little Owen Meany has captivated my heart and I am sorry to think of his battles ahead.

Journeys Versus Battles

The Lord of the Rings trilogy is on the PBS Great American Read list. I read the first, enough to recommend it to patrons, and with so many books out there, this is my standard philosophy on book series: read one and move on! I loved the journeys Tolkien took us on but found the battles to be arduous, violent, and senseless at times.

I recently had communication with an acquaintance who mentioned the idea of journeys versus battles as we discussed the challenges of cancer. He wrote “I remember being part of a group working on a program for people living with cancer and the doctor who led this said he preferred to refer to this as a ‘journey’ rather than a ‘fight.'” Thought provoking.

tolkien road

This captured me; the concept almost alien but I wanted to love the idea of a cancer journey, or life as a journey with cancer being one of those bumps on the road. Somehow I was feeling Tolkienesque, maybe the accidental adventurer like Bilbo Baggins, on this cancer journey, working through incredible, mythical landscapes with help from some amazingly, magical medical staff. I love to travel so this sounded great!

Uphill Battles

 

BUT (this is a bigger but still!) I don’t agree! The idea of cancer as a journey is upbeat and positive; that works for me! The reality is we cancer patients do battle each and every day. We fight back the demons in our minds. We warriors do surgeries, radiation, clinical trials, and defeat the evil darklord, cancer. This is OUR fight against evil!

Like Tolkien’s epic series, we cancer patients are never sure what is around the next corner. We learn to enjoy the time between peril, we battle our Smaug dragons, and fight for our treasure (not a mere golden ring), but time. Some of us lose our battles to time, some of us continue the fight.

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Yes, the analogy of a journey is a reasonable one, just fraught with battles to be won! We do our best to not get stranded in the battles, and must prepare with courage for each assault. Our journey may be a bit more dangerous than some but we all have our demons to fight, dragons to slay. Working through this idea, I’m going with life is a journey, and cancer patients the warriors against disease!

Watch the amazing Great Amercian Read on PBS. MY very favorite book on the #GreatReadPBS list? It’s not the ones I’ve mentioned in this blog. Tell me yours in the comments and I’ll tell you mine!

#melanomatheskin #cancer #GreatReadPBS #melanoma #TuesdayThoughts #somanybookssolittletime

We can-cer vive!

Janis

“Educated” by Tara Westover and My Cancer Education

I’m here now!

I am one of the lucky ones, metastatic melanoma and all. Tomorrow is just that, beyond our reach.  The past is something to learn from and move forward.  Being present, a gift for us all, is part of my cancer education. I’m learning to find peace in this moment.

My yoga class delved into one of the seven chakras this week, the Muladhara chakra or the root chakra. We walked, feeling the earth beneath our feet. We talked, sharing the sense of strength found in our foundation. We sat, finding our sitting spot and bringing motion to that area. We meditated, feeling the support and depth that we call earth. Balance and stability ensued.

Yoga centers me, and as a fairly new student, each pose requires my attention. This week’s class reminded me of a quality that I cherish in myself, a quality of being a realist. In feeling lucky to be here, I also reminded myself to be here now. It’s so easy to get caught in what medical treatment is next, what my health insurance will look like in the future, the fact that some nights sleep is hard to come by, even though fatigue rides my back daily, like the backpack I can’t seem to lose!

Instruction is sensitive to different needs of this restorative/gentle yoga class. Some challenges are physically apparent in this welcoming group, some not obvious. Being the youngest in this group, my clinical trial aches and pains, and other side effects are not evident. Our individual spiritual and emotional challenges find bearing,  find roots as class continues.

I Am Therefore I Exist, I Exist Therefore I Am

This all reminds me that being grounded reaches deeply beyond having our feet on the ground; it reaches into our very being to remind us to be here now, to leave the past and the future to other place markers in our personal timeline. Appreciate what is good, what is right, what is now.

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Being safe in that moment was mentioned in yoga class. Simple enough, right? Not necessarily and touching on that reminded me of those who live in unsafe circumstance. Having just read Educated by Kara Westover,  the book challenged me with the abuse she endured, that being safe is unattainable for some. Disease and suffering comes from many paths.

Education of Little Me

Educated, a difficult book for me, depicts family dysfunction, abuse, and a rise above the squalor. Intended to be inspirational, each reading left a bad taste in my mouth, a sorrow for those who know no safe moment, who carry the burdens of the past. Reading through to the end of this memoir, I felt pride in Tara’s accomplishments BUT a deep sadness for struggles within that will be with her forever, that are with many forever.

What resonates between reading Educated and pushing myself to go to yoga is the feeling. Cancer and all that comes with it is arduous, something that is now part of my life forever. I thought I wanted to read this book and in the process, I learned that healing for me isn’t learning of someone else’s pain and misfortune. Yes, it is a story of rising from the ashes and I admire Tara. The feeling of her story remained one of sadness.

Healing is about finding hope and courage; for me it’s about being here now. I came home from yoga, captured a moment with the wild asters, bees, and monarchs in the garden, feeling the foundation of who I’ve become, in spite of disease. Feeling positive joy in that moment providing me with strength to get to the next moment, and the next moment, and the next….

#melanomatheskin  #cancer #melanoma #naturalskinrocks #Thursdaythoughts #thisonesforlindacherylsusann

We can-cer vive!

Janis

“Garden as Though…

You Will Live Forever”-William Kent

Wow! Where did that week go? My intent to write twice each week has been lost this week. Reminds me of  the lyrics to My Poor Meatball “that rolled right out the door”! I meant to write, I intended to write, and it all slipped out of my hands and right out the door!

Gardening is one of my passions. This year, with the clinical trial for recurring melanoma, I chose to focus on healing, well-being, gardening, and finding balance within the cancer life. The middle of last week found me starting to disassemble my garden beds…bittersweet, for sure.

“If you have a garden…

and a library, you have everything you need”- Marcus Tullius Cicero

Veggies are growing, the Three Sister Garden has had some success and some failure (I’ll talk about this in another post), and my glorious sunflowers are now bending and bowing with the weight of shorter days. Fatigue gets the best of me so my dreams of preserving, drying flowers, saving seeds, and more are not realistic. Healing comes in the form of watching and nurturing the garden, the self.

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Wonder and wonderful beyond words for me this past weekend was the visit from three very dear librarian friends. Adrenaline got me through the basic preparation for this easy gang. Because of the incredible dynamic among this former work team, each of us jumped in and as always, things went as smooth as butter (with lobster, of course)!

Dancing to the Salsa

Tomato season is here, right? I have a lot of sweet cherry tomatoes. Company brought some of the most amazing, BIG tomatoes, peppers, corn, etc. Conversation rambled about fresh salsa ingredients, issues in the world, food choices, mutual friends, healthy diet ideas, and books, so much so that I need to make a list with the titles reviewed. I’ll be sure to share it!

full frame shot of red tomatoes

Amazing Vermont produce, two seaside dinners, and chocolate humus were just the side dishes for me. Nourishment of the soul came around those meals. Laughter, love, and life made our time replete. Sated by friendship, deep and strong, I will remember to carry this soul-fullness on more challenging melanoma treatment days. #melanomatheskinwerein #cancer #laughteristhebestmedicine  #melanoma #naturalskinrocks  #thankyouforbeingyou

We can-cer vive!

Janis

 

 

Genre, Cancer, and Book Bullying

Building the reading list!

Listing

What do you read? With company visiting, this is a common conversation in our home and one that always fascinates me. Titles, electronic or hard copy, are shared. Favorite library tales are discussed and everyone returns home with new lists, fodder in consideration of future reads, not all will be read but all will be considered.

Easy reader!

Hammock Reading

We are readers, my husband and I, with rare common ground. He sometimes enjoys light reading, and Robert Parker is his favorite mindless read when looking for something comfortable and non-strenuous. He tackles other things but loves a-re-read of Parker, The Ancient Child, All the President’s Men, and others. He is voracious, I dive deep into well worded writing. One we both enjoyed and have talked about at length is A Gentleman in Moscow.

As a librarian with a huge focus on family literacy, I am passionate about picture books and will always bring home a stack from my local library. I also love children’s chapter books that I can share with my grand-girl. I find this to be an enjoyable escape from the drama of being a cancer patient and the uncertainty that melanoma brings to the mind. This is my complete area of comfort, my hammock in the library world.

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In working with young adults, I learned to love certain authors; currently I am reading Tomi Adeyemi’s Children of Blood and Bone; this title has shown itself in multiple reviews and Jimmy Fallon’s Tonight Show chose it for a summer read. Well, technically, it is the finalist of a handful suggested. With his promotion of reading and libraries, I knew it was a book to read now!

Library lover!

Reading In And Out Of The Zone

I’m out of my element with this book as I’m not a fantasy fan. It’s an allegory of the black experience, gods of color, and the belief of magic. I love it and highly recommend it! This is definitely a series in the making with movies to follow. Check out this interview with Tomi Adeyemi and I’m also loving that she encourages young writers. Thank you, Jimmy Fallon for this suggestion. Sometimes, it’s great to read out of our comfort zone.

So why blog about this and how does it relate to cancer? Reading takes on all forms; an engineer friend who reads technical matter, a non-fiction lover like me, or a light summer read that everyone loves. It’s all GOOD! Reading Matters! Recently, when getting scans at Dana Farber Cancer Institute, I asked a technician what she was reading. She joked and said she reads scans. We all have our focus and I’m grateful for that expertise. With an area in question on the CT this time, medical and professional reading is critical.

Awareness of discoveries, studies and clinical trials, and pertinent health information leads me to books and the latest in the field of cancer. AACR medical journal articles editor picks relating current cancer studies involving prostrate, breast, lymphoma, and other cancers are weighty reads, at best. For me, it’s an attempt to understand that which is not understood.

Beyond the Fantasy

But then, aren’t we all waiting for the cure; the magic beyond the fantasy, the scientific moment when healing takes place, when pain is replaced with hope, when that one child is given the reward of life for all his or her courage and efforts to be well. Cancer research is not a facile path, nor is the documentation. Reading snippets works for me; I leave the serious understanding to medical professionals!

Reading Matters!

Skip judgement and don’t be a book bully. People read for many different reasons. Escape/fantasy seems to bring more balance to me right now though next up is a non-fiction book I’ve been wanting to read by Tara Westover, Educated, another New York Times bestseller. So tell me, what are you reading and where do you find your inspiration? I’d love to add it to my list! #melanonatheskin #cancer #melanoma #bookreviews #readingmatters  #Tuesdaythoughts #whatareyoureading #librarylover #naturalskinrocks #wecan-cervive

We can-cer vive!

Janis