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!

beach-coast-hd-wallpaper-348520

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

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!

boxing 1

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

What’s In Your…Backpack?

Just a quick note as I prepare for my next infusion…that alone is an assumption! There will be blood tests, spot checking, scans, and evaluations. It’s a time of mixed emotions; I always hope that I pass with flying colors and get the immunotherapy that may be saving my life, I also feel the anxiety of what might not be okay.

I’d really love comments from others on what you do when faced with challenges ahead. Do you take that nervous energy and just go out and have fun? Or do you take on a project to keep your mind and body busy, expending dark energy? Do you get lost in your worry?

And That’s Why It’s Called a Nervous “WRECK”!

A few days out from the process and it’s a rainy day. The beach walk I thought I’d squish in this morning was given a literal “rain check”. Travel bags are now packed, some small projects completed, and next up will be the cats! Wow, to the World Series but it also means no more Red Sox to keep me inspired. I prefer to have bills paid and administrative duties completed. Clean sheets are always a good thing. Diversion, good! Nervous? Hell, yes!DSC01632

All of this seems silly but in having things in order for now, I expend some tension. Doing that leaves more room for things I will need while at Dana Farber Cancer Institute; it’s my emotional backpack. We all have them and when cancer treatment is imminent,  it’s important to NOT fill my emotional backpack with negativity, nervousness, and worry.

Get Ready (by The Temptations)

Here’s a brief list of what I will put in my emotional backpack:

  • belief in a tomorrow
  • courage
  • hope
  • inspiration
  • integrity
  • love

Hokey as hell but in putting in positive feelings, there is less room for the emotions that drag one down. Sure, they are there (those scary thoughts), and yes, when I walk into the medical facility there is a pit in my stomach. Metastatic melanoma, stage III, is one deadly disease. I’m well versed in what I’m up against.

Choosing to bring all those positive emotions and desires with me gives me strength, strength to get through a long day.  I put a positive spin on something I never thought would be a part of my life; I believe that I’m part of something bigger and that satisfies my soul. Cancer research is imperative and clinical trials matter.

Balancing Act

Balance will be skewed on my medical day, no doubt. There is no way to discount the possibility of a questionable scan, bloodwork values, or other concerns. This is how those cancer cells are found, this is the chance we cancer patients have. Packing the positives in my emotional bag become the bulwark for whatever this trip brings.

Exhausting, the Yervoy infusion is only one part of the depleting feeling of cancer treatment. Finding your emotional infusion may take time, but look high and low; positive emotion may just be the reserve you need to pack. Take the time to discover what it is for you and how to pack it up for when you need it!

selective focus photography of balance rock
Balance is a building process!

We all need to have emotional reserves for challenges in life. I’d love to hear what works for you. Please share in the comments as we all will benefit from learning what to pack in life’s emotional bag! What works for you?

We can-cervive!

Janis

#melanomatheskin #wecancervive #cancer #worldserieschamps #cancer #melanoma #TuesdayThoughts

Nobel Prize for Immunotherapy Pioneers; The Long and Winding Road

black car on road near mountains

The Road to a Cure

This past Monday, James P. Allison, PhD and Tasuku Honjo won the 2018 Nobel Prize in Physiology or Medicine for their work in cancer immunotherapy. For those of us cancer patients who live because of immunotherapy, this cancer research is critical and the award brings some sort of personal satisfaction.

By stimulating the inherent ability of our immune system to attack tumor cells this year’s Nobel Laureates have established an entirely new principle for cancer treatment.  Metastatic melanoma is the skin cancer that I have. I participate in a clinical trial and was randomized to receive Yervoy (ipilimumab) which works with T-cells to improve the body’s ability to fight cancers such as melanoma.

Accelerators and Brakes

red stop sign

James P. Allison studied a known protein that functions as a brake on the immune system. He realized the potential of releasing the brake and thereby unleashing our immune cells to attack tumors. He then developed this concept into a brand new approach for treating patients.

In parallel, Tasuku Honjo discovered a protein on immune cells and, after careful exploration of its function, eventually revealed that it also operates as a brake, but with a different mechanism of action. Therapies based on his discovery proved to be strikingly effective in the fight against cancer.

Allison and Honjo showed how different strategies for inhibiting the brakes on the immune system can be used in the treatment of cancer. Different strategies, but both accelerating toward a healthy future for cancer healing. I may be just a small mile marker with immunotherapy, but I offer GINORMOUS thanks to Allison, Honjo, and others who have advanced the cause, set us on a path. Here is the scientific background of their work.

Hitching a Ridearm asphalt blur close up

So how does any of this relate to me? Us? I’m thrilled because in doing my clinical trial, my primary goal has been to improve the study of cancer. I’m not sure how it works or not for me, but perhaps in working with the staff at Dana Farber Cancer Institute I’m helping someone else down the road as the cancer research continues to move forward.

 

Yeah, I want to rid myself of cancer but I passionately want to participate in scientific research. Medical “stuff” is not my thing but through this trial, my T-cells are being driven, hitchin’ a ride toward a cure. Maybe not my cure, maybe not yours, but somehow I feel a bit “noble” for being on the right road toward a cure!

monopoly

#melanomatheskin #cancer #nobelprize #melanoma #wecan-cervive  #nakedskinrocks #yippiforipi #Thursdaythoughts

We can-cervive!

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.

person rolling green gym mat

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.

DSC01682

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

 

 

Metastatic Melanoma and Medical Melee

Life Lessons

We’re learning, every day, each of us in our own unique way. Think on this for a moment. What was it today that was that aha moment. Each day we are given an opportunity to take more in, to consider, and grow. Give yourself that moment to consider how to move forward, to sail on.

Melanoma and the health information available is growing, too. Cancer patients may feel overwhelmed with information, options, and cancer research which seems to grow faster than the speed of light! Some of us are lucky enough to be alive thanks to clinical trials and cancer research. Consider what you need or want to know, and then get on with living. Processing helps us to move forward.

Courage ebbs and flows; many refer to it as the medical merry go-round. Recently, one of the many scans that I have every 3 months sent me into a minor tailspin.  Cancer is such a head game! Totally expecting positive tests, my oncologist suggested further testing. No problem, I can do that, right? UGH. Everything turned out fine but below is example of that damn mind game that creeps in.

Waiting Is

Initially, confidence ruled and I knew it was no worries. And then sinking feelings, inspiration drowning, hope weighted down. That positive attitude twisting, careening in the flotsam of medical melee. Then, time ticked for an eternity as I waited to have the scan, waited for the doctor to come back from vacation, waited to know, waited. I’ve learned to negate the monsters of waiting, to keep them at bay.

Author Robert A. Heinlein wrote in Stranger in a Strange Land, “Waiting is”. Perfect, really, and the dangling of this thought encompasses the abeyance of disease, of cancer, of the abhorrence of living in a suspended state. I refuse to live as though on the bridge of the ship as it begins to sink, watching, waiting as though a bystander in my own destiny.

Navigating Your Course

How do you deal with those times, the uncertainties, the waiting? I’d love to hear how you cope with waiting, fear, and the head games. The mind knows what has been presented, fear can take us down. I choose to live, live deeply, and to fill my sails!

boat deck leisure ocean

Another lesson learned. Life with cancer is different and different forever, no doubt, but the quality of the voyage is ours to determine, to balance. Right your vessel, tighten your sheets, and carry on! #melanomatheskin  #cancer #melanoma #wecan-cervive #sailawaywithme

We can-cer vive!

Janis