Knee High by the Fourth of July

So whose knee are we talking here, anyway? I mean, if it’s mine the corn’s not meeting the standard. If it’s my “almost five” grandson, things are ahead of schedule! This year, gardening keeps me focused on life, on what might be if you believe.

Mary, Mary Quite Contrary

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Three Sisters Garden Early June 2018

Back in March, I was planning and planting my gardens, something I never had time for when reaching out and outreaching with literacy initiatives.  Originally, I envisioned seedlings in the cellar as the good light and extra space seemed best.  However, I learned I needed great light so plywood splayed around the living room and seeds germinated!

 

Working with all my seedlings this Spring kept me busy enough (in and around dragging through the day!), and also got me to thinking, thinking about things other than cancer.  Sunshine is for growing food, flowers, trees, and life. Flora, the goddess of flowers and nurturer of botany, needs light. Light is life.

Ironically, here I find myself dealing with metastatic melanoma and learning how to live with the sun and not directly in it. That same invaluable sunshine that gives life to us can also take it away. Each day I choose to find inspiration in the light, the power it brings to Mother Earth. Find your passion to see you through and the courage to stay out of the darkness!

Three Sisters Garden

One of four siblings, and with 3 of us females, I decided to try a Three Sisters Garden this year. Some of my seedlings included corn and winter squash.  These are two of the Three Sisters vegetables, and I later planted bean seeds directly into the garden, representing the Three Sisters. The day I planted the seedlings of corn and squash, the clouds melted into rain. At first I thought it could be sister tears though quickly realized this gentle, unexpected rain was to settle the plants, to nurture, just as my sisters always had with me.

 

Remember the book Carrots Love Tomatoes?  The Three Sisters Garden is of Native American origin and is a variation on companion planting.  Each of these 3 plants, winter squash, beans and corn, provides nutrients and growing space for the others.  I was reminded of this method last Fall when I read Braiding Sweetgrass by Robin Wall Kimmerer.  After borrowing this book from my library, I purchased a copy because it resonates with me deeply.

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Three Sisters Garden Early July 2018

My two sisters have passed, each of a different cancer, and this is my way of recognizing the hole that lost love leaves and that we all incorporate loss into life.  Nurturing ourselves, remembering others, and living the best damn life we’ve got today. My garden is definitely an experiment…in patience, in growth, and in the hope of tomorrow. But then, isn’t life an experiment as well?

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Three Sisters Garden July 2, 2018

Knee high by the Fourth of July? Hell, yeah! What are seeds of inspiration that you sow?  Please comment on how you look to the positive! #threesistersgarden #melanoma #melanomatheskin #cancer #garden

We Can-cer vive!

Janis

Red, White, and You

Red, White, and You!

The 4 B’s of Independence Day

Happy 4th of July! Celebrate your independence in breaking from the stereotype that a dark tan is healthy. Independence Day in the United States is a time for boating, barbecues, and beaches. Oh, yeah…it’s also a time for some of the best burns, sunburns that is.

Laughingly, in the past, I couldn’t understand why people went to the beach or barbecue if they wore all those clothes or hid under an umbrella. My sister and I called beach umbrellas “the impalers”, because of their potential to let loose and hurt someone (as well as those pale people sitting under them).

Open Minds, Open Umbrellas

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Now, I am one of those people. I even have a small umbrella that clips to my chair-perfect for those situations where there is no shade and I find myself caught in the sun. I keep it in the car. Sound extreme? Try having your head snapped down to a radiation table day after day to (hopefully) rid yourself of metastatic melanoma (to name just one treatment phase for melanoma cancer patients)…now that’s extreme. Suddenly, the idea of sun safety makes sense.

It’s great to be white, brown, or whatever your natural skin color is. In Victorian times, women wanted to whiten their skin as described on Women of the World’s site. The idea was that white skin indicated you were an aristocrat and not out working in the fields. While the extreme and unhealthy measures such as bathing in arsenic springs were prevalent, we know better now about whitening the skin. Today, we also know about reddening the skin and skin damage.

Burn Baby, Burn

Contemporary culture has given us more leisure. A less agrarian society (unfortunately), people enjoy free time. For generations, we’ve viewed darkening our skin as a sign of beauty. Media continues to depict tanned bodies as the beautiful, healthy look we crave. This needs to change because I’m just not craving my next immunotherapy. Are you?

#naturalskinrocks

#Naturalskinrocks, whatever your color-love you, love hue! Dana Farber Cancer Institute dedicates the 6th floor to melanoma and other skin cancers.  That’s where I go for the clinical trial that I participate in on a regular basis.  We’re all there together, terrified and seeking resolution, seeking life; every person with every skin color imaginable, seeking hope and answers.

Scan Versus Tan

Skin cancer and in particular, melanoma knows no color barrier, no discrimination here.  Think your genes are meant for sunbathing, and that you are not going to get cancer because your genetic makeup is to have dark skin? We all think we are safe until we find ourselves on the 6th floor of Dana Farber. Now I scan (MRI, CAT, etc) instead of tan. I’m not wanting to scare you, I’m wanting you to help change our culture away from the solar genuflection that kills. Avoid the red, avoid the burn.

Happy 4th of July

Celebrate Independence! Celebrate the red, white, and blue! Celebrate creating a culture of #sunsmarts.  #melanomatheskin #melanoma #skincancer #naturalskinrocks #avoidtheburn #Happyfourthofjuly

We Can-cer vive!

Janis

 

 

Sun Worship, Part II

Or why didn’t I get this as an adult?

An earlier blog speaks of some basic sun worship mistakes from my childhood.  The culture of the times was all about that healthy glow and rich tan skin. Really, there was nothing to get; sun bathing was the norm. Don’t let the guilt get the best of you.  Change begins today, never yesterday.

In my young adult years, say in my 20’s and 30’s, I continued to seek sun whenever possible.  My young family  enjoyed walking, hiking, playing sports,riding bikes, gardening, camping, boating, and best of all, the beach, whether lake or ocean. We were active, happy, and brown.

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My new version of light!

Time Out

My son was, and is, feral. He seeks the wild places and “needs” to be outdoors. He was lucky enough to have that most of the time as a child and to create his life around that need as an adult. For our family, outdoor adventure made us feel alive and the best times were “out”.  Dear children-I hope that your past sun history never becomes what mine has.  If I only had known and I hope skin cancer never comes in to your life.

I love being a librarian but sometimes felt work got in the way on a gorgeous summer or winter day, when the natural world beckoned.  I chuckled while doing a mid-February story time about the beach and felt like I was in heaven when I plunked down into my beach chair to read with families.  Summer reading brought the enticement of story time and programs anywhere outside; the pool, the library garden, the bookmobile at the ball field, the free lunch program all lured me in for reading in the great outdoors!

My sisters, brother, and all of our families loved our family reunions.  Sun meant fun as we spent a whole weekend together in the warmer months, traipsing kids, babies, and parents to the beach, on boats, up gorges, to outdoor fairs, through campgrounds.  See the theme in our lives?  Best days were often the maximum time out, just out.

Scoodic Peninsula, Maine!

 

I Took A Walk in the Woods And Came Out Taller Than the Trees (Henry David Thoreau)

I don’t intend to give up on my life alfresco; I intend to be #sunsmart. Wow!  This is a complete lifestyle change.  We know the drill of sunscreen, SPF clothing, and avoiding peak sun times.  There is no way, I repeat NO WAY, I will give up on fresh air and that wonderful feeling it brings.

How do you deal with the sun?  What are you learning to modify your life without giving up your outdoor adventures? I’d love to hear from you because we all have much to learn, not so much to give up. It’s that idea of balance that comes into play so much with all of us, but particularly with cancer patients. It’s easy to tip the scale.

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Enjoy the moonshine!

I am super pleased that I am wrapping my head around getting on and getting out there. Have courage, bring mindfulness into your adventure.  Don’t let melanoma rule.  Find inspiration in the new, different way that you live. Sun safety matters and so does the adventure we call life!

Here’s one easy example-Get out there and enjoy a bit of moonshine this week. Life is full and so is the East coast moon on Thursday! It might be a cloud-covered evening but hey, there’s always tomorrow!  #melanomatheskin #melanoma #thursdaythoughts #melanomamoonshine

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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

 

 

Summer Solstice

sun-47083_960_720.pngAh, the longest day of the year! Abundance of daylight! Summer daze ahead!

This Is…This Was

This is… no wait, this was one of my favorite days. I’ve always been a summer girl with a birthday in June and a great love of the warmer months.  Sun worship is…no wait, was a routine of my life. Summer solstice was always a little bittersweet as I felt 14 hours of daylight was perfect and begrudged the coming of the dark.

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Happy Summer Solstice to you in the Northern Hemisphere! ‘Inti Raymi’rata, the sun festival of the Incas, is one celebration of light.  Norway, “Land of the Midnight Sun”, celebrates 24 hours of daylight now. Stonehenge is a site of ancient worship of the sun.  Celebration of the sun started long before our melanoma; its how we cancer patients react to it that really makes the difference.

Yes, I do notice on-screen ads depicting the sun fun thing…it seems everything is better during the warmer months. Whether drinking a Corona or buying a Subaru, life is incredibly perfect on sunny summer days. And this mentality is everywhere. Did I think about this before skin cancer?  Nope and the marketing is not going to change overnight either.  Life changes and how are you dealing with having a life and melanoma, too?

Sun Celebration

Favorite holidays?  Some love Christmas, others Halloween.  Any one that knows me, knows my favorite day of the year is Ground Hog Day!  Advocating for this day is easy…we start talking about Spring, no matter how far away the reality is; we can see the light at the end of the winter darkness tunnel.  Damn it!  We’re half way to Spring. And that is something to celebrate!

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Ground Hog Day, Summer Solstice, and another favorite-Winter Solstice I celebrate knowing the sun is going to come back to us all yet again. Sure I have a lot of fun with people and my Ground Hog Day initiative but hey, come February we all need to tee-hee a bit.

All of this celebration is my solar system; it’s just part of how I mark time, seasons, and living.  Appreciate sunshine, warmth, and growing vegetables. Find courage in shimmering seas,  hope dawning on one more day, inspiration in beautiful sunsets.

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Be Shady

Do what you need to do to live life with a mindfulness about melanoma and other skin cancers.  Check the EPA UV Index, seek shade, wear sun screen, avoid intense sun, wear protective clothing, and get on with life! #melanoma #melanomatheskin #sunsmarts #summersolstice #skincancer

One more rotation for all of us, now that is something to celebrate! 

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