Creepers and Stalkers and Trolls, Oh My!

Writing 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.

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.

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

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!

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.

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!

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?

Photo by Thierry Fillieul on Pexels.com

Photo by Pixabay on Pexels.com

Photo by Pixabay on Pexels.com

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:

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.

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!

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

 

In An Instance

via Daily Prompt: Complication

Word to the Wise

Words, whether written, read, heard, or said, are powerful.  The power brings emotion; joy, sorrow, concern, abandon, love, hate are a few of the plethora of feeling that comes from the word.  Words can also bring complication.

If old enough, we remember where we were when we heard of J.F. Kennedy’s assassination, the words stunning the adults around us.  Or perhaps it was learning of the 9-1-1 tragedy that brings us to a time of grief and sorrow.  Martin Luther King, Jr.’s speech, “I Have a Dream”, or hearing your baby cry out to you for the first time brings tears of joy.

 

Tilt-A-Whirl…or Was That Tilt-A-World?

We’ve all had personal conversations, bringing joy or sorrow, into our own lives.  Do you remember learning that you had cancer, or perhaps that a loved one did?  The c-word is a tough one in my family as cancer is a prolific taker of lives for us. We have waited for information, finding out about cancer diagnosis, and learning how to readjust to the complication cancer brings to family and friends.

For me, after a routine checkup with my doctor in 2015 and my questioning a worrisome spot I noticed on my face, it was on to a dermatologist.  Always healthy, I was good with all of this, no worries and no fear, and then…a friend…said “Oh, a biopsy?  Well, that is a terrifying word that none of us want to deal with.”  YIKES!  Now I was nervous. Amazing how the power of words can skew our thoughts “in an instance”.

Photo by Pixabay on Pexels.com

The dermatologist visit went well and biopsy done, no worries, right?  Until the phone call. “In an instance”, my world tilted in a different way. “Your biopsy showed melanoma.  This is very serious and I can suggest an oncologist, a surgeon, and some other medical professionals you will need to help you.  Janis, this is very serious.  You could die if left untreated”.  I’m not sure I even heard another word, the loud crashing of cancer and life’s complications roared through my head.  Wait!  This isn’t how I planned my life to go.

It’s Really What You Do With It

Hope, that is what we cancer patients have. That and a lot of medical genius to navigate the challenges of such disease.  Processing a cancer diagnosis is a network of emotions, challenges, obstacles, and re-envisioning of life.  Those words, “you have cancer”, open the floodgates to so much; fear, anger, sorrow, to name just a few, come pouring over us.  Processing our new life, the complications of not-the-life you wished for, is probably the greatest challenge for many of us.

Those words, change you forever, bring you to a new place.  Life is tricky enough, right?  It’s processing and learning how to incorporate this c-word complication that is crucial to our changing lives.  Finding the beauty in your modified life may just be around the next corner.  Bring your hope to the forefront and allow the happy energy to guide you because “in an instance”, you will help yourself and those you love.

#melanomatheskinwerein  #sunsmarts  #melanoma

We can-cer vive!

Janis