Genre, Cancer, and Book Bullying

Building the reading list!

Listing

What do you read? With company visiting, this is a common conversation in our home and one that always fascinates me. Titles, electronic or hard copy, are shared. Favorite library tales are discussed and everyone returns home with new lists, fodder in consideration of future reads, not all will be read but all will be considered.

Easy reader!

Hammock Reading

We are readers, my husband and I, with rare common ground. He sometimes enjoys light reading, and Robert Parker is his favorite mindless read when looking for something comfortable and non-strenuous. He tackles other things but loves a-re-read of Parker, The Ancient Child, All the President’s Men, and others. He is voracious, I dive deep into well worded writing. One we both enjoyed and have talked about at length is A Gentleman in Moscow.

As a librarian with a huge focus on family literacy, I am passionate about picture books and will always bring home a stack from my local library. I also love children’s chapter books that I can share with my grand-girl. I find this to be an enjoyable escape from the drama of being a cancer patient and the uncertainty that melanoma brings to the mind. This is my complete area of comfort, my hammock in the library world.

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In working with young adults, I learned to love certain authors; currently I am reading Tomi Adeyemi’s Children of Blood and Bone; this title has shown itself in multiple reviews and Jimmy Fallon’s Tonight Show chose it for a summer read. Well, technically, it is the finalist of a handful suggested. With his promotion of reading and libraries, I knew it was a book to read now!

Library lover!

Reading In And Out Of The Zone

I’m out of my element with this book as I’m not a fantasy fan. It’s an allegory of the black experience, gods of color, and the belief of magic. I love it and highly recommend it! This is definitely a series in the making with movies to follow. Check out this interview with Tomi Adeyemi and I’m also loving that she encourages young writers. Thank you, Jimmy Fallon for this suggestion. Sometimes, it’s great to read out of our comfort zone.

So why blog about this and how does it relate to cancer? Reading takes on all forms; an engineer friend who reads technical matter, a non-fiction lover like me, or a light summer read that everyone loves. It’s all GOOD! Reading Matters! Recently, when getting scans at Dana Farber Cancer Institute, I asked a technician what she was reading. She joked and said she reads scans. We all have our focus and I’m grateful for that expertise. With an area in question on the CT this time, medical and professional reading is critical.

Awareness of discoveries, studies and clinical trials, and pertinent health information leads me to books and the latest in the field of cancer. AACR medical journal articles editor picks relating current cancer studies involving prostrate, breast, lymphoma, and other cancers are weighty reads, at best. For me, it’s an attempt to understand that which is not understood.

Beyond the Fantasy

But then, aren’t we all waiting for the cure; the magic beyond the fantasy, the scientific moment when healing takes place, when pain is replaced with hope, when that one child is given the reward of life for all his or her courage and efforts to be well. Cancer research is not a facile path, nor is the documentation. Reading snippets works for me; I leave the serious understanding to medical professionals!

Reading Matters!

Skip judgement and don’t be a book bully. People read for many different reasons. Escape/fantasy seems to bring more balance to me right now though next up is a non-fiction book I’ve been wanting to read by Tara Westover, Educated, another New York Times bestseller. So tell me, what are you reading and where do you find your inspiration? I’d love to add it to my list! #melanonatheskin #cancer #melanoma #bookreviews #readingmatters  #Tuesdaythoughts #whatareyoureading #librarylover #naturalskinrocks #wecan-cervive

We can-cer vive!

Janis

 

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

 

 

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

 

 

 

 

Two Heads Are Better Than One

So Cliché

and so true!  Learning you have cancer may put you in a tailspin. My post, “In An Instance”, shares how that one moment changes your life forever.  Not the way you anticipate your life to go, but hey, we all have our challenges.  With all the change in my life, I’ve had the education of a lifetime, literally. Having a go-to person for all the medical melee is essential. And remember, your caregiver’s life has been rocked forever, as well.

Do you have someone to take you to appointments, surgeries, scans, etc? This is a critical part of your healthcare.  Learning about my melanoma was tough, but easier to deal with in the comfort of my own home, my own life.  I thought I was also ready for the medical world. Ensconced in the ‘idea” of cancer, I was ready to deal, or so I believed.

Going to appointments, with the wealth of information and limited options, threw me for a curve.  A great listener by nature, I now found myself half-hearing. A family member had said that a support person is essential as somehow the patient mind checks out.  He was so right with this!  Our minds protect us when trying to process any trauma or difficult information.  Instant processing doesn’t happen for most of us, and so we catch some of the medical conversation, not all.  At times, I feel as though I am an object being discussed while I observe from above….crazy, right?  It might just be my way to try to have some objectivity.

Janus
Janus- The two headed God of beginnings and passages

Location, Location, Location

Having someone with you is critical to your whole health plan.  Don’t consider this an extra to your cancer care; you need to have someone help you.  For one example of the challenges (and minor in the whole scheme of things), with two people you are able to navigate actual physical challenges such as finding your medical facility, planning your day, acquiring wheel chairs, local parking, and actual location of your scans, doctors, etc.

Finding your way may sound easy or tough, but when you add that layer of cancer angst, everyday things become more challenging.  Two people can each use their strengths to pull a full day of cancer related appointments.  This is not where we want to be but figure out what works best for you and appreciate that support.  Finding our way has so many layers!

Get It Together

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Photo by Fancycrave on Pexels.com

At my last CT scan, I overheard a gentleman on his phone, saying he came by himself to the hospital as it is too hard for his elderly father to bring him to Boston. He was there alone, nervous, and scared. All too often, cancer patients have no one to support them. Find resources that work for you!

Help is out there, and Dana Farber Cancer Institute is one example of Patient Navigator support.  Cancer patients have so much to contend with and these health care professionals are there to provide services and inspiration.  Whether flying solo,  needing travel information, needing language translators, or wanting additional support, consider these options as part of your plan.  All cancer facilities have options for navigators, social services, counselors, and more. “Together” has many faces and please find the services that make your cancer journey easier.

What support do you have in place? What is working well for you?  I’d love to hear from you! And a HUGE thank you to all of you in support and caregiver roles. Hope lives through you! #melanoma #melanomatheskinwerein #cancersupport

We Can-Cer vive!

Janis