Heroes Among Us

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An American Hero

 

With the passing of John McCain, many of us are reminded of the fragility of life and the opportunity we have while living. Disconnected politically, I admired McCain for his service to the United States, for his integrity of character, and for his clear, well defined opinions. He was a fighter and we cancer patients and caregivers know about that.

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“Nothing in life is more liberating than to fight for a cause larger than yourself, something that encompasses you but is not defined by your existence alone.” 

“Courage is not the absence of fear, but the capacity to act despite our fears.” 

I could talk about his melanoma or his glioblastoma. I could talk about his side of the isle versus the one I favor, I could say how meaningful his thumbs down was on the Senate floor in an effort to span party lines and vote to keep the Affordable Care Act that so many Americans need.

All of it matters, his list of accomplishments extensive. Inspiration comes to us in snippets of life, people, and example. Disease is an equalizer and McCain taught us to live each moment to the best, to carry our courage close by, and to find the strength to carry on.

R-E-S-P-E-C-T

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We lost Aretha Franklin recently as well. Not one to follow the celebrity life and finding it caustic for the most part, I admire those in the limelight who are exceptionally talented, use their status to work toward the common good, and have integrity of character. Hmmm….integrity really is key to a life well lived!

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“We all require and want respect, man or woman, black or white. It’s our basic human right.”                                                                                                                                                                                                                                 

“Every birthday is a gift. Every day is a gift.”

“Sometimes, what you’re looking for is already there.”

Lover of life, lover of people, we lost Aretha to pancreatic cancer. I consider her a hero as she was far more than the Queen of Soul. Aretha fought many personal challenges, aided in the promotion of civil and women’s rights, and had the courage to hold her head high. She taught us what respect truly means.

If You Could Spend an Hour with One Person

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Who would that be? Ben Franklin comes to mind (though I’ve others such as Eleanor Roosevelt, Indira Gandhi, Susan B. Anthony, Rosa Parks, Virginia Woolf, Dalai Lama, Vincent Van Gogh, Martin Luther King, Stephen Hawking…).

Ben Franklin, a founding Father and inventor, was also a man of his word, literally. He wrote often and started a “lending library” in 1731. I find his integrity of character to include: being a person of action, in service to his country, and peppered with great wit and humor. He taught us to be true to ourselves, to be real.

“What you seem to be, be really.”

“Wish not so much to live long as to live well.”

Who are your heroes?  Be sure to write your comments so we can continue this conversation. My deepest feeling on this is that the hero need not be historically great, in the limelight, or a modern day patriot. Integrity is the commonality; the hero is in each of us, ready to teach.

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You Are My Hero

Unsung heroes are around us. It’s the Mom walking her hairless child through Dana Farber heading for the next treatment. It’s the cancer patient learning that the disease is terminal. Or maybe, it’s that person pushing through the next cycle of cancer uncertainty in hope of more time, another moment to enjoy life. Cancer examples, yet each of us has our own example in life, in integrity. Look at the person beside you; we all wear capes!

We’re in this thing called life together. Perhaps our hero life is small, perhaps it’s a kind gesture, a smile, a hug. Perhaps you make a positive difference today. Perhaps you model the character of integrity…

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“Do you love life? Then do not squander time, for that’s the stuff life is made of.”          Ben Franklin

#melanomatheskin #cancer #hero #wecan-cervive #naturalskinrocks #melanoma #Thursdaythoughts #respect

We can-cer vive!

Janis

Immunotherapy and Playing For The Win

Deal Me In

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Some days we feel lost in the shuffle.

Wondering about immunotherapy? Some days, I wonder myself and I am participating! Dana Farber Cancer Institute is where I go for treatment of melanoma and the online library gives a good overview of immunotherapy.  Whether a cancer patient or caregiver, the amount of  health information out there is overwhelming. Take a good look at your hand, figure out a strategy, and play to win!

When first learning of the suggested path for my recurrent metastatic melanoma, I cringed. Never having interest in medical science, it all felt like one grand experiment. And now, one year in to the clinical trial, I would say “yes, yes it is one grand experiment”, and how lucky I am to be here to say that! It’s not luck really as there is a tremendous amount of scientific data and staff backing our choices.

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Chances

Knowing nothing about clinical trials (and why would I?), I did some research and felt that I “would like” to be on pembrolizumab (Keytruda) though there were three drug options in this study.  It seemed that there were some successes with this immunotherapy and the treatment period was shorter and more do-able as we traveled to Boston. Wow, was I surprised to realize I had not even paid attention to the fact that the study randomizes. In other words, I would get whatever drug the computer randomly chose.

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Taking a chance in the game of life!

And The Winner Is…

Ipilimumab (Yervoy) which I will take for 3 years if all goes well.  Initially, there is an induction phase. Basically, for me, this meant going to Dana Farber every 3 weeks for a few months last Fall. At that time, blood work, scans, appointments, all lead the way to getting an infusion. Some times I was refused due to poor lab results or questionable health. Heading back north without the treatment was tough, a quiet ride with uncertainty about our game plan, wondering how to play this hand, and knowing there is no clear win.

Let’s ace this!

And then, to turn around and say, yes! Yes to trying another trip soon after because of the time constraints of the clinical trial. After the induction phase, visits are now every 3 months, a holiday in retrospect to the intensity of the earlier months. Basically, the same drill: blood tests, scans, appointments, which all lead to the last part of the arduous day, the infusion.

Infusion time varies. Mine is 1.5 hours and I am always relieved to start the infusion, knowing I have passed the tests for this time, anted up with hope. It all starts with an IV port for various tests and at the end of the day amazing infusion nurses check and re-check everything, hook me up, and I take it all in, every drop of hope. By the way, this immunotherapy is not a personal cocktail but is prepared based on my weight for that day.

Parameters of this drug research frequently remind me that this is about finding answers, about learning from the 1,300+ candidates and there will be winners and losers. This clinical trial is for 3 years though I can drop out at any time. The medical team will continue to evaluate me based on the length of time I did the infusions. So far, I march forward or should I say drag forward celebrating one year of immunotherapy next month! The side effects are tough for me and feel heavier this time. How are you doing with your treatment? Please comment on your challenges!

As I mentioned in an earlier blog, immunotherapy is not chemotherapy.  A Cancer Today blogpost writes that immunotherapy is progressive treatment though the side effects are relevant and more tangible than previously known. There are many options depending on the type of cancer and the study.

Yippi for Ipi, Playing the Hand You’re Dealt

Research shows that Ipilimumab has success with melanoma. The website also states “YERVOY will not work for every patient. Individual results may vary.”-I get it, the disclaimer, and I choose this clinical trial for a couple of reasons:

  • I’ve got things I want to do
  • I hope this research will help another melanoma patient
  • I’ve always believed in paying it forward
  • I think I may be more able than others to tolerate the side effects
  • I will be followed and watched for several years

I could just skip the trial at Dana Farber because Ipi is approved for some stages of melanoma (meaning I could receive treatment closer to home). When randomized I chose to continue because yes, selfishly I want to live and think I have the best team in the world, but also because I want to participate in the study. There’s nothing pretty or glorious about this and some days the deck feels stacked. Bottom line is I want to keep playing. While some see this as a gamble, I know it’s a chance to win!

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Play for the Win!

#melanomatheskin #melanoma #naturalskinrocks #yippiforipi #cancer #Thursdaythoughts #playforthewin #immunotherapy

We can-cer vive!

Janis

 

 

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

 

 

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

 

 

 

 

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

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.

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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