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…

Melanoma_Awareness_Ribbon_alternative
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

 

 

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.

wrinkle

 

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

Scans and Tessering

space

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

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

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

Parallel Universe?

time tunnel

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

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

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

We Can-cer vive!

Janis

 

 

Melanoma Marathon

Now Racing Through My Mind…

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

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

Not The Fast Track

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

DSC01634 (1)

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.

shoe

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.

training

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.

weathervane
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.

DSC01608
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