6 Things You May Not Know About Melanoma

Breaking News

Some of you may remember a time when breaking news meant something intensely serious was happening. When J.F.K. died I was watching some morning show while my Mother ironed (another concept that dates many of us!). I remember it vaguely as I was young; my mother was crying and that felt like breaking news, like something had broken because it had.

Breaking news today, well that’s an occurrence that we no longer pay attention to as it has lost it’s earnestness. Breaking news is everywhere, everyday and no longer has any significant value. That leaves each of us to determine what to watch, what not. Like the friend who is never quite honest, I’ve tired with the uncertainty of the news and the shortage of information, and the lunacy is abundant.

BUT…

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Watch for spots

There are things you may not know about metastatic melanoma, a type of skin cancer, and I feel it is breaking news to inform you with a few short hits on what we know at this point. I save the most interesting for last so keep reading! There are many misconceptions about melanoma, so here’s a basic list of health information:

  1. Melanoma is deadly so be sure to be aware of the abcde’s of melanoma. Do skin checks and be #sunsmart.
  2.  Basal cell and squamous cell carcinoma are considered non-melanoma skin cancers. Read about them here at Web MD. While they are skin cancers, they do not turn into melanoma.
  3. Cancer resources for skin related disease can be found in online resources such as the American Academy of Dermatology Association. The photos may help but don’t let that be your guide. Like the shirt that you bought online that turned out to be a completely different color, your skin cancer may not look like digital photos.Be wise and see a dermatologist in person.
  4.  Depending on the staging, melanoma is not a quick surgical removal. Possibilities include excision, plastic surgery, nuclear dyes (the most painful thing ever) to find lymph node drainage, radiation, and a plethora of scans and tests.
  5. Pay attention to the UV Index – the sun is powerful!

And Here It Is…The REAL Breaking News!

   6. Melanoma does NOT react positively in chemo treatment.

Yeah, that’s the big news. it may be used to relieve symptoms of this aggressive disease, most commonly for Stage IV patients. Cancer treatment is equated to chemotherapy and guess what? That’s not always true! I’ve had people say things like:

  • “Wow! You must be getting a light dose. You haven’t lost your hair”
  • “You look really healthy compared to other people I know who’ve been on chemo”
  • “Why are you fatigued if you’re not receiving chemotherapy?”

My cancer-related fatigue is from a clinical trial that I participate in and I receive the drug Yervoy. The study compares Yervoy to other drugs such as Keytruda used for metastatic melanoma. At this time, there is no cure for melanoma and I hope that in participating in this immunotherapy research, that someday there will be a drug or series of drugs that can reduce the death rate for others, and not be filled with risks and side effects.

Visually, I do look like myself and I believe I will heal. Fatigue is intense at times; not that I need to nap but I feel like the a horse pulling thousand pound weights most days. Aches are challenging me more over time, and I’ve been offered steroids to alleviate the pain. I’m not ready to put more drugs into this soupy/saucy mix but I’m close.

Every day is a great day. I only mention some of the melanoma cancer tips because there are many misconceptions. There’s a lot going on inside some of us though it may not show! I’ve learned to not judge a book by it’s cover in a medical sense now that I have medical turmoil within. Inspiration also comes from within, so look beyond all the cancer craziness, find your courage, and bring that to the surface and let it shine! #melanomatheskin #getnaked #melanoma #cancer #yervoy

Thanks for signing up and please do share your thoughts as this is how we learn, grow, and find hope!

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.

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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

 

Sun Worship Part III

Time’s Up…We Know Better

Yeah, I’ve written about my childhood days in the sun and my days as a naive adult, too. But how did I manage to continue this sun worship until I became another cancer statistic? Those of you who are still sun junkies will want to read this I hope.This sun habit is no longer sensible. It kills.

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With adult children with lives of their own, my time beyond work was…well, mine! A novel idea, I readily choose more warm weather vacations in the Spring, sought out time at the beach, and did a lot more mucking about with boats. For me, life has always been best when on, in, or near water.

My sun-safe habits were moderate. Because of sun damage at a young age, I applied sunscreen to my nose regularly. Super solar days, I’d put on a baseball cap and bring a long sleeve shirt for the end-of-the day sunburn. If at the beach, I’d turn my chair away from the late day sun. On a boat, I’d be sure to cover up my skin as the day floated along. I started wearing sun glasses more…I mean who had heard of ocular melamona?

Feel the Burn

For those warm weather Spring vacations, I did something that I felt was very smart. I went to tanning beds. Being a logical person, I wanted to not burn on vacation and be able to participate in whatever sand, sun, sea adventure that came along. By tanning, my skin had a base of tan allowing me to be out and about without worrying about frying. I wouldn’t call myself a frequent flyer for tanning, but felt better for going. Perhaps it was a vitamin D boost or perhaps it was feeling warm?

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Whatever my source of sun, mindfulness had a different spin. At the end of the day, using lotion to prevent sun damage was part of the routine. Some days, a soak in an oil bath rejuvenated my dry skin. Different home remedies might include using a vinegar soaked wash cloth or a cold compress for sunburn. What sunburn remedies do you know of? I’d like to include them in a future blog listing so let me know!

The BIG Burn

The result of my sun-safe habits?  Metastatic melanoma. Hear my sarcasm? I wasn’t protecting myself. For the most part, I was doing “after: sun damage care. In my lifetime, our culture had no fear of the sun. We worship tan bodies, warm heat, and the relaxation of the hazy, lazy days of summer. My logic on how to have that healthy glow was actually setting me up for the big burn, the burn of fighting for my life.

Are you thinking you won’t get skin cancer? Or that if you have a little area removed, that life is good so grab that beach chair? There are different types of skin cancer, all of them are scary and melanoma is deadly. You don’t want to hear this but neither did I when I got that biopsy result that changed my life. Please think again!

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Thanks for following me and please let me know how you are changing the sun worship culture in your life. #Sunsmarts are in! Love being outside and  being sun shy is where it is at now that we know better! Save a life-yours! Be practical and learn sun-safe habits. #melanoma #melanomatheskin #naturalskinrocks #cancer #mindfulness

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