He Said, She Said; Finding Balance in a World of Words

This blog isn’t political though I have deeply strong thoughts about my government, the direction I’d like to see the country move, and the lack of integrity everywhere. Instead of talking about Kavanuagh or Ford and others in today’s hearing, I want to discuss language. The use of language in medical scenarios, such as melanoma cancer as described my Mayo Clinic.

Cold Calling

Health information is critical to making sense of a frightening diagnosis, mine was a second cancer diagnosis in 2017. The first time the biopsy came back positive for melanoma, my dermatologist left a terrifying message on my phone, the second time the same. I appreciated knowing up front that I have metastatic melanoma, and each time returned his call for more details.

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It’s what I describe as a cold call, learning that something is seriously wrong but needing to call to find out the details. Somehow, it would be more fitting to do this in person, but keep in mind time is of the essence when fighting cancer. After each of these calls, life went in to hyper-mode to learn what was next. The power of words, right?

Words can be critical to how we feel, our perspective on healing, and where we find our hope and courage. I want to hear what words have brought challenge to your life, what words have brought joy? Something as simple as clean scans are ginormous in a cancer patient’s life.

Them’s Fightin’ Words

Medically speaking, I’ve had some curiously frustrating situations. For example, in talking to my first local oncologist when I felt my cancer was back, she told me not to overreact. My local dermatologist made an illustration of how my excision was done and described the healing process. Unfortunately, I believed what they said, there words the gospel of medical belief.

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Except I pushed for a biopsy, except something felt wrong, except I needed to believe in myself because metastatic melanoma was in another area of my face. No blame as these medical professionals felt they were right, but jeez the time lost while I am feeling the he said she said of medical mistakes. Meanwhile, time had gone by….

My Hearing – No, I’m Not Up for SCOTUS!

Working with Dana Farber has been an incredible experience, the level of knowledge, the cancer research done there, and the integrity of the staff is amazing. Though my local radiation doctor didn’t feel I would have hearing loss, one of my Dana Farber oncologists, said it was very probable. Another he said, she said…I am going with what I know: my hearing is poor, I no longer have ear wax (just what you needed to know, right?),  and my left ear just feels different.

Sorry to complain, it’s not my point here at all. This writing is really a reminder to the collective we. We know our bodies, our minds, our spirits. Believe in yourself and find your inspiration. Balance is critical to our healing from disease; accurate information is essential and professional staff builds confidence.

Doctor, Doctor Give Me the News (Robert Palmer)

In August, I had a CT scan at Dana Farber that found a questionable area, and the minute I went in to see the best skin cancer oncologist ever (okay, I may be prejudiced!), he greeted my and immediately disclosed his concerns. He also let me know it was not melanoma, and that this was not his area of knowledge.

It turned out to be nothing of concern, but how reassuring to have my oncologist explain what they saw, what needed to happen, and admit that he was not the doctor for this concern. That’s integrity of words, using language to tell what is known, and what direction my medical challenges need to go.

There is no fake news and real news, no he said she said in the medical world. Find your best possible information and staff, and move toward your medical reality confident in the integrity of what is known at this point. I only wish that we could use the words integrity and government in the same phrase…that would be language I’d be hearing!

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#hesaidshesaid    #melanomatheskin   #cancer   #melanoma #naturalskinrocks #medical integrity #danafarber  #scotus

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!

That Healthy Glow

There’s a lot I’ve learned about cancer in my lifetime, and more than I want to know about the consequences of melanoma. It really wasn’t all that long ago that many of us didn’t know just how deadly skin cancer can be.

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I grew up outdoors as I mentioned in an earlier blog post.  We didn’t realize how damaging the sun could be, or at the most, thought we needed to use lotions and creams after sun damage to keep our tan skin beautiful. I’m going to generalize here and say most of us knew of skin cancer but thought it was no big deal.  The worst that could happen would be we have a small area removed, right?

Wrong, wrong, wrong! How naive we all were and for all of those who still think they are “immune” to cancer and the power of the sun, I deeply hope that is true for you. I know I was absolutely fine with my tan, my rosy cheeks, my “healthy” look…until I found the first area on my face and after the biopsy, learned I was unhealthy, very unhealthy as I had my first cancer diagnosis of melanoma.

Making a List and Checking It Twice

I have a plethora of cancer tips to share with cancer patients and caregivers, along with everyone else. Today I want to share some basics about skin cancer.  A family member asked me if basal cell carcinoma will turn into melanoma if left untreated?  What a great question and the answer is no.  There are different types of skin cancer and while all of them are frightening, they do not start as one type and morph into another.

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Here is a very basic list of skin cancers:

  • Actinic keratoses-pre-cancerous growth
  • Basal cell carcinoma-most common skin cancer and should be removed to avoid disfigurement as it can grow into surrounding tissue
  • Squamous cell carcinoma-causes damage and grows deep

Any of the above skin cancer diagnoses should be taken seriously and mean there is abnormal cell growth.  They do NOT turn into melanoma and each has their own description and photo at the American Academy of Dermatology Yes, you can have more than one kind of skin cancer and each has unique characteristics.

  • Malignant melanoma-the most aggressive and deadly skin cancer

Skin cancer may travel though it’s far less likely to happen with the non-melanoma cancers in the first bulleted group above.  Early detection is beneficial, and with malignant melanoma early diagnosis and treatment is critical.

Get the Skin-ny

Have an area that you are wondering about?  Or have you had sun damage in the past? Dermatologists are a great place to have your skin examined or biopsied if necessary.  Even people who have had no skin issues now have an annual skin checkup.  Why not?  It’s simple and may just ease your mind.

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Please don’t wait if something doesn’t seem right.  My first area of melanoma didn’t look like the online photos; visit a real doctor to clarify any skin concerns. As I mentioned, early detection is very important, and be #sunsmart and take care of your skin now; it’s never too late! I’d love to hear from you on how you are dealing with your skin cancer concerns. #melanoma #melanomatheskin #skincancer

We can-cer vive!

Janis

 

 

Seesaw, Or Life in the Balance

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Putting the pieces together, as represented here, demonstrates well the ongoing search for balance.

Each of us, unique to our own being, and together in the struggle for balance.  Light and dark, as in the traditional yin yang symbol, visually depicts contrary forces.  That symbol, rooted in Chinese philosophy, also represents a wholeness, a coming together of natural opposites. Finding balance, a challenge for all time, is a process, not the end game.

The Tipping Pointbalance stickperson

Life throws things at us. Some things we can see coming and possibly divert, some we create to throw the imbalance the other direction.  What about those life changing tipping points of which we have no control, that appear from nowhere? No control?

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We do have control when blindsided by health issues, tragedy, loss, or whatever tips  balance off kilter. Yes, trauma is debilitating and life altering.  Yes, processing takes time and is so very important. But NO, tipping points don’t have to control our lives but more often are incorporated into the person we are becoming.

(A small aside from me, the librarian!  Have you ever read Malcolm Gladwell?  I love his writing and would suggest The Tipping Point, not about cancer but a great read about pivotal change that might just have a positive outcome!)

Look, Ma, No Hands

Balance evolves, a living organism that we must listen to and nurture throughout our lives. Each day brings the good, the bad, the negative, the positive, the bright, the dark.   Listen closely to yourself as the scale brings you to difficult places and uplifting places.  Learn how you deal with cancer or whatever challenges you face.  Respect your need for time to process; there is a massive internal change taking place. Be patient as the new you comes forth.

Need to cry because you’re terrified of your cancer diagnosis?  Want to do a happy dance, right there in the hospital lobby, because your scan was clear?  Do what works for you to bring you into balance.  Mostly, listen to yourself.  You know where your “feel-better” place lies.  Will a bite of dark chocolate bring a smile to your face?  Do you need to get outside and burn off some bad energy?

Support people are critical as I mentioned in an earlier post, but you know you the best.  There may be days when you don’t even recognize yourself through the cancer haze.  Listen hard, be kind to yourself, and when ready, do what works for you to bring even a bit of balance, in this day, in this moment, right now.

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I’ll share some ideas of ways to find that balance in my blog another day.  Right now, I’m listening to myself. It’s definitely time for a cup of courage (tea)! What are you going to do for you?  #thoughtsforTuesday #melanoma #melanomatheskinwerein  #cancer #lifeisabalance #tuesdaythoughts

We can-cer vive!

Janis

 

Reading Matters

Reading matters!  It matters a whole lot to me and as a former library director, I had a newsletter called “Reading Matters”!  Read important documents, great novels, and non-fiction that impassions you. Speak your language(s) ardently and with effervescence. Compose silly soliloquies, sing a pretty ditty, and be sure to take time to rhyme with that four-year old in your life!

Digi-death

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Cancer patients and caregivers have a lot of serious information in our day, in our lives.  Reading about the clinical trial that you may be eligible for, signing off on radiation side effects (with no idea what this means for you), filling out medical forms, and searching online for information about your cancer diagnosis…

Uh-oh, online research can be a killer, in itself.  Wondering what the life expectancy is for Stage III melanoma?  Or who is most likely to get this deadly skin cancer?  Or information about how other patients are adjusting to life with cancer? What about the  details about the drug that is being suggested?  And who is this doctor, anyway?head.png

Let’s face it! There’s a lot of digital misinformation.  We’ve all learned how to ignore, choose, and create online data.  What’s real?  What’s not?  Often information is gleaned from different sites and snowballs, taking on a life of its own, albeit false. Finding real data is tricky when oft times there is no verification. Don’t we already have enough mortality concerns, without drowning in medical untruths?

The Real Deal

Get back to the basics and be wary of just googling your health concerns.  Go for the legitimate, avoid the questionable. Here are a few cancer resources that I find useful and why:

American Cancer Society – basic cancer information and resources

Dana-Farber Cancer Institute – my hospital and melanoma team

Mayo Clinic – a good overall health site for answering health questions or looking up symptoms

National Cancer Institute – a department of U.S. Health and Human services, there’s a lot of data and resources here

Skin Cancer Foundation – international organization seeking to educate and prevent skin cancers

U.S. Food and Drug Administration (FDA) – useful resources and up to the minute data for health, nutrition, medication, and regulation

Obviously, each of us need to find the online data that best represents our cancer diagnosis.  Ask your professionals what they recommend as you learn about your disease.

Screen Shot…or Is It Shot Screen?

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So yeah, connect those dots using valid information.  Seek information integrity and beware of the less scrupulous websites. Just a few more thoughts about seeking medical information:

  • Ask your oncologist and medical team-they’re the experts
  • Step away from the screen
  • Don’t believe everything you read
  • Use sources that you know to be reputable such as Mayo Clinic
  • Online information is general information and may not pertain to you
  • Step away from the screen
  • Learn how to use your medical facility’s website and individual patient information platform
  • If something you read concerns you, write it down and ask your medical professional
  • Uncertainty with validity of information is counter productive
  • Did I mention step away from the screen?!!!

Be sensible.  Use your digital time wisely.  Look up metastatic for the umpteenth time if you still find it hard to believe that this is part of your diagnosis. Then, remember that your medical team knows you and your cancer diagnosis.  Reading matters but so does living your life. Close out the screen, breathe, and enjoy the view.      #melanoma  #melanomatheskinwerein #cancer

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

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.

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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”.

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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.

words have power

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