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

 

 

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

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

 

Flag Day and Looking for My Delete Button

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Old Glory

We all know Betsy Ross may have made the first American flag, and that the current flag represents the 13 original colonies in its blue and white stripes with 50 stars symbolizing the states. Proudly display the American flag on#flagday June 14th.

So Where Is That Delete Button?

But…how many of you know that the U.S. Flag Day is also Julie Petrowski’s birthday? I met Julie the year we moved back to Minnesota. I was in 6th grade and honestly,  I don’t know if she was in my grade, what she looked like, or anything much.  We were neighbors and friends; my first ever snowmobile ride was with Julie and her Dad, she was in my Girl Scout troop. That’s the full sum of what I remember about Julie Petrowski, in part because being a military family we again transferred after a 9 month stint in the Midwest.

Julie is a brief snapshot of my past and non-essential information. So, tell me why can’t I purge Julie from my database of useless information? No offense, Julie, but you probably don’t even remember me at all! I don’t have #bigdata space in my brain and there seems to be a lot of stuff that could go.

The Mystery of History

Sure, we remember our global history, our medical history, our career history, our family history.  I try not to dwell on the cancer “stuff”, but often need to retrieve it for medical professionals.  Again, this is a great time to refer to my medical notebook.  I have the ability to put some of the important stuff in the back of my mind.  It seems like a great storage closet until I need it again and then, whoa, where is that?

Thoughts can be wonderful, thoughts can be detrimental. Like I don’t need to ponder my melanoma history, that exact moment that the sun niched out a few facial cells to wait, in hiding.  Consideration of whether this happened as a child, a teen, or an adult is irrelevant.  More importantly, what am I doing to be present, right now? Scurry the counter-productive thoughts away!

The Evils of Retrieval

Working with family literacy initiatives for most of my adult life, I’ve got a fascination with how brains work, what we keep and why.  How amazing is it that young children understand so much vocabulary long before they are developmentally ready to speak?  Or that teens have all these brain connections made in their short lives, of which many will be un-wired because they are not needed or used. And Alzheimer’s -what happens to people with that tragic, memory depriving disease?

A-Maze!

Exercise that brain! Stimulate your mind. Work if you are able. Play scrabble or cribbage, listen to music and sing along, discuss current events and issues that matter to you, write a note to an old friend or fellow cancer patient. Meditation brings mindfulness! Between those moments of cancer-related fatigue, pain, treatment, or whatever cancer brings your way, be open to mind exercise and positive thoughts.  Cancer tips (life tips) are quite simple cues to jog your memory. Leave yourself notes, set the oven timer, put a reminder in your phone -do what you need to for information retrieval and be patient with yourself.  Give yourself the gift of inspiration…you can only go up from there!

How do you clear out the cobwebs?

Julie Petroski seems to be with me for life, and like my cancer thoughts, I incorporate her into life and move forward. I’d still love to better understand how to do a bit of brain housekeeping, clean out the cobwebs and useless information. Maybe then I might remember where I left my eyeglasses or that bit of important information that is quietly, tiptoeing though my head, but not forthcoming…until the middle of the night!

Friendly reminder – put out your American flag on June 14th! #melanoma  #melanomatheskinwerein  #oldglory #deletebutton #Thursdaythoughts #mindfulness

Happy Flag Day, America! And please wish Julie a Happy Birthday if you see her!

We can-cer vive!

Janis

Under the Influence; Cancer-Related Fatigue

exhaustion smileyCancer-related fatigue, a consistent plague for cancer patients, is pulling hard on me today.  Writing while I am deeply under the fatigue curse is not my typical mode for writing or working.  Today I choose to write under the influence; to put the feeling of fatigue in to black and white space with a side of fuzzy gray. Walk a straight line-what?  I’m zigzagging through this day!

Currently on a clinical trial through Dana Farber Cancer Institute, I am grateful for the medical chance to rid myself of melanoma, AND feel empowered to help other skin cancer patients in the future.  I’ll delve into the trial more in another writing, but today I want to share with you one of the side effects that I struggle with every single day, cancer-related fatigue.

Intrigue of Fatigue

No, I’m not necessarily tired.  How about you?  Tired is a time for napping or “The Big Sleep” at night after physical and/or mental activity.  Fatigue and tiredness are not interchangeable.  We all have our moments of tiredness or that mid-afternoon slump.

So, then, what is fatigue?  Here are a few examples to consider:

  • Waking up in the morning and surmising that you are dragging
  • Knowing that there is no energy reserve, the tank is empty
  • Finding that you need to take breaks throughout the day
  • Deciding that paying the bills is beyond you right now
  • Feeling frustration for what you long to do
  • Pushing yourself one day, only to have zero to give the next dayanimal cat face close up feline

 

“Men weary as much of not doing the things they want to do as of doing the things they do not want to” –Author Eric Hoffer

Physical and emotional, fatigue is real and real grueling.  The American Cancer Society’s post about cancer fatigue is worth exploring. When asked, I explain that it feels like I’m dragging cement weights through my day with a side of brain fog. Let me know how you get through your fatigue. Here are a few fatigue cancer tips that work for me:

  • Drink coffee (I just started last summer…not sure if it helps but it tastes wonderful as I pysch myself UP for the day)
  • Exercise or move (let your body know you’re up for the challenge!)
  • Yoga (found this awesome class last Fall-brings together restorative poses and meditation)
  • Pause and give yourself time to re-set as needed

     

  • Eat Well!
  • Push through the fatigue when you have to (ie. work)
  • Watch for the bigger waves of fatigue, ride them out with what works for you, and also ride the waves of feeling okay
  • Free yourself from the headset that you are fatigued because the cancer is winning-be positive when you can
  • Incorporate fatigue into your life; this may be the new you so get on with living!
  • Laugh and smile – you’re doing the best you can!

 

Chin up, even when lying down!

Cancer and treatments are just one piece of our lives.  With a 3 year infusion course, my clinical trial is a long haul, and no guarantee that once the immunotherapy is over that the cancer-related fatigue will be gone.  Let’s choose a path of courage and hope.  We all need to carry that inspiration with us for life, no matter how heavy. And smiles carry no weight! #melanomatheskinwerein  #melanoma  #cancer-relatedfatigue #cancer Phew, time for a break!

We can-cer vive!

Janis

 

 

May You Be Ready for June, July…

“May, more than any other month of the year, wants us to feel alive” -Fennel Hudson

May is also melanoma and skin cancer awareness month, a great time of year to build awareness and to change lifelong habits of sun worship.  I’ve focused my writing this past month on inspiration, courage, and hope.  I’ve shared tips for cancer patients, caregivers, and interested by-standers. And whoa, the month is gone like that, my favorite!

May Day, May Day

A month for renewal, lovely lilacs, and those darn four-o’clock in the morning birds, May brings us a splendor of sensory delight in New England.  While May is the month that targets melanoma education, every month needs to be about sun safety.  If it’s January and you are out for a ski, be prepared.  April and a seemingly overcast day, the sun’s rays are burrowing through the clouds (and potentially your skin).  November, with the sun distancing itself, still offering powerful cancer causing light.

 

May You Be Open to Change

Summer we are more habitual with our sun screen and shade seeking; make #sunsmarts a year round routine.  As a librarian, passionate about early literacy, I always encourage families to make reading at least a twice daily habit, “kinda like brushing your teeth”.  Make skin care rote year round, too; get your groove on, keep sun safety simple, and enjoy!

Okay, I am a word nerd and you’ll recognize my fervency for language, books, and expression throughout my blog. The online dictionary, Merriam-Webster.com, defines the word may as “having the ability to” and  also means having possibility. Think MAY as we jump to June! Give yourself the upturn of May year round!

#melanoma #melanomatheskinwerein #melanomamonth

We can-cer vive!

Janis

Take Note(s)

and plenty of them.  Today I’m going to tell you about my melanoma notebook. Included in there are questions for the next doctor visit, notes to self if I am unsure of scheduling, need to make a phone call, have a financial question….and the list goes on.  This same notebook has a basic history of my skin cancer journey.  Mine is chronological, though I know others that have different notebooks for different parts of their cancer journey.

AND, my caregiver sometimes takes notes during our various visits. With my half-hearing, I can later refer to the notebook and read about what I missed or misunderstood.  Having someone with you is critical to your whole health plan and I write about that in my post entitled Two Heads Are Better Than One.  Give yourself credit!  There is a lot going on; bring a support person and write things down!

Noteworthy

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Another use for my notebook is the actual physical process of writing.  It’s not long or pretty, but jotting down what I hear when it is critical information helps to remove the thought from my head and let it rest on paper.

For example, when told that a CT scan shows spots on my lungs again…I don’t hear much else.  I was then told by my head oncologist that “we are aware of these areas” but they are not of concern at this time. YIKES!  That is a worry flag for me.  My husband (and support person) suggests that I write what I hear in my notebook to get it somewhat out of my head.  It works and I can refer back to this when it floats through my mind, feeling reassured by what I have written down.

Keeping track of medical expense is super useful.  I do that in the back of my notebook. Last year, 2017, was insane medically.  Knowing that medical mileage, tolls, etc were a tax deduction made a difference for us.  After each visit, I note the date, mileage, and other medical deductions.  For me, it’s best to do this as each medical event comes along…trying to reconstruct this at year end, is not a good idea.  I struggle with fatigue and brain fog at times so tackling a bit of notebook housekeeping as I go along makes sense. Keep in mind, medical tax deductions are changing again for 2018.

Sticky Note (AKA Time to Get Out the Notebook Again)

Painful, searingly painful, when after 1.5 years hoping I was cancer free, to have to find my notebook.  Reading over the first melanoma diagnosis, etc. brought back so much emotion that I didn’t anticipate!  Once over my initial shock of needing “THE NOTEBOOK” again, I found it extremely useful, reminding me of certain events in the past.  With a large team of doctors, this notebook is also a handy reference guide.  Put a contact phone number in your notebook; you may not like that you are in need of a medical journal, but it is very valuable to you.

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I NEVER thought I’d being needing a backpack to go to Dana Farber Cancer Institute, ever. Backpacks mean outdoor adventure, right?  Wrong! My backpack is where I keep my notebook and pen(and other treasures I will write about another day).  I refer to my notebook as needed and always before the next appointment. UGH, to the next appointment angst, but we know we can do this! What were positives and negatives about the last medical day? What tests were done? What was I feeling?   Yes, I do note my okay-ness or my worries sometimes during appointment days.

Again, jotting down a few notes helps to take the strain off the brain! For the most part, when not at appointments, my medical notebook stays in my backpack, the keeper of tough thoughts, questions, and answers, heaps of answers. We’re quite familiar with each other, and there for each other when we need to be. You might say “a love/hate relationship”, that notebook and I!

Note to self!

So much learning going on in the cancer life, right?  Whether a current cancer patient, in remission, a survivor, or a caregiver, we don’t have super powers!  Hope, inspiration, and a few suggestions to make cancer patients life a bit easier.  How do you handle the plethora of information that comes your way? #melanomatheskinwerein  #melanoma   #cancer  #cancertips

We can-cer vive!

Janis