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

 

The Sunshine Vitamin

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Then

Wow, wow, wow!  Do you get overwhelmed with all of the options for good health?  I know I do.  Traditionally, I use to take just a multiple vitamin, knowing it may do nothing but also that it might just supplement the gaps in my quite decent diet.  That was it for the most part and with no health issues, it worked.

And Now!

I still prefer to not take a lot of meds, granted I am on a clinical trial that infuses my body with hope!  One quick thought I want to share is that if you have melanoma or are at risk for having melanoma, or just want to be careful in the sun, vitamin D might be a good consideration.

Why Vitamin D3?  To avoid skin cancer, we seek shade, wear appropriate sun shielding clothes, and wear sunscreen.  Vitamin D, also known as the sunshine vitamin, is created in our bodies through our skin and is essential to bone, skin, immune system, and general good health and feeling energetic. If we are watching our “sun intake”, we must find other ways to put Vitamin D in our bodies.

Cod Liver Oil?  Can’t Do IT!

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Food is one option with many fish providing us with a good source of oil and Vitamin D.  Here are some food options and the Vitamin D level for you:

  • cod liver oil, 1 tablespoon: 1,360 IU
  • herring, fresh, raw, 4 ounces: 1,056 IU
  • swordfish, cooked, 4 ounces: 941 IU
  • raw maitake mushrooms, 1 cup: 786 IU
  • salmon, sockeye, cooked, 4 ounces: 596 IU
  • sardines, canned, 4 ounces: 336 IU
  • fortified skim milk, 1 cup: 120 IU
  • tuna, canned in water, drained, 3 ounces: 68 IU
  • egg, chicken, whole large: 44 IU

For most of us, eating foods that give us a reasonable amount of Vitamin D is not realistic.  I LOVE fish, eggs, mushrooms, and most everything listed above (okay, I will never be okay with cod liver oil!).  The problem is that I don’t eat enough of any of it. Now that I am sun shy, I need to take a supplement.

Options Are a Good Thing!

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A dermatologist recommended Vitamin D3 to me and suggested 2-3 capsules a day, each 1,000 IU.  Mayo Clinic has a similar recommendation though there are many different recommendations online.  Talk to your doctor and determine if taking Vitamin D3 is right for you and what amount suits your health needs.

So many things to consider when a cancer patient.  I don’t intend to stay inside and hide, but skin cover is a part of the life.  Vitamin D is one easy way to take care of my body while having sunsmarts!  Do you take vitamin D supplements and how much? I’d love to hear your thoughts on this!

#melanomatheskinwerein #melanoma  #sunsmarts #vitaminD

We can-cer vive!

Janis

 

Sun Worship and Sun Smarts

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One of my goals is to create a new culture around sun loving.  The sun, provider of light and warmth, has been worshiped forever.  Life itself would not exist without the sun. I am not promoting that we become vampires, no, no, no!  Let’s use our #sunsmarts!

I grew up with no regard to the power of the sun, the potential for life threatening disease.  We were the generation that actually had the time to relax at the beach versus earlier generations that worked long hours.  We sought the sun versus shade and craved that Coppertone tan  (remember their illustration of  a child with a white butt in contrast to the glorious tan?).  Sunscreen, what was that?

 

Sunshine on the Water Looks So Lovely (John Denver)

As a child, I was given one of my father’s white Navy hats to wear; it never covered any of my face but I sure looked cute! My nose peeled and off to the beach we went again.  Cover ups were for foggy or dreary days when we turned bluest of blue, before admitting it was time to get out of the water. Yes, we were an East coast, sea loving family and when, as Navy brats we moved to Minnesota, we were loving those 10,000 lakes.  Vacation ALWAYS meant water, fishing, and boating. Weekends , too, were about being on or near the water.  If not, we were surely outside.  Remember the freedom with the parental guide of “be home when the street lights come on”?

As we grew, my older sisters loved to use something to lighten their hair. I want to call it “Sun In”?  We were envious of each other’s tans, talked of best sunburn remedies, and were sure that we looked best with our deep summer skin color.  I would joke that my  career would be beach chair tester.
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Your Sun History

Space.com offers facts about the sun’s history but what about your personal sun history? For me, sand buckets of wonderful memories come to mind; whether beaching, boating or (sun) bathing our family loved this time together.  It was the start of a life time of sun worship and I never would have thought skin cancer would effect me. Or you either…what are your sun traditions? The first step to change is to consider this question.

Did you know that melanoma can have a long history in your body?  You may have damaged your skin as a child or it may have happened last year.  Those damaged cells sit in-wait.  Determining what is the catalyst to activate that killer cancer is one of many melanoma mysteries.

 Like A Red Rubber Ball (Paul Simon)

I sit here watching the sunset over the ocean (yes, I live across the road from the Atlantic).  The beauty of the sun is breathtaking…oh, that is so not the right wording for melanoma patients.  Sun worship is deeply ingrained in our culture from beautiful days to lovely sunsets, from growing our food to keep our seasons revolving.

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Let’s learn to admire the sun from afar, appreciate all that solar power, and create a culture where people worship their health more than their tan.  That’s not easy if your life has been about being outdoors. The sun is here to stay, so it’s more about teaching others and teaching ourselves, too.

What are you changing to be safe in the sun? I’d love to hear from you!  #melanomatheskinwerein #melanoma #sunsmarts

We can-cer vive!

Janis

 

Thin Skin

via Daily Prompt: Thin

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Photo by Pixabay on Pexels.com

Do you have it, thin skin I mean?  I find with melanoma, and think it may be true for many cancer patients, that some times my feelings are raw, dangling nerve ends.  Honestly, I don’t intend to let things bother me.  Mostly, I am upbeat, positive, and oh so grateful to be alive!

Howdy!

How do you deal with things that people say or do that feel like a negative charge racing through your body, zapping you of any positive energy? I have always been one to ask how someone is…because I really want to know and really care, too.  When people ask me how I am, whoa! Do they want to know what is really going on? Best buds, yes, they do.  The lady at the bank not so much. I have learned to say “I’m doing okay” to the casual askers, because really they don’t need to hear that my scar tissue feels very tight or that my knees are killing me today.  When you think about it, you aren’t going to hear about their life challenges either so get over the woe is me thing!

People tell me I look good.  I enjoy hearing that but in the quiet of the night I wonder if people think I should have melanoma marks all over my body?  Or I should be deathly thin because I have cancer?  Friends, family, and acquaintances may not know how to talk about cancer….remember, everyone feels differently and absorbs information differently.  Thin skin or not, enjoy every compliment and kind word.  You deserve it!

Right now I choose to believe I am on a healthy path with almost a year since my last tumor was removed.  That opens me up to feeling the possibilities, to feeling lighter, to having a tougher skin with less fragile emotions.  Don’t get me wrong, I am tough and a fighter.  You’ll never see a lot of tears with me, and hey cancer patients we all process in our own way.  Don’t feel you are a mess or not doing the human interaction thing well.  We each do it our way and we love the skin we’re in!

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Odd Case

One of the most interesting comments I had last summer after two facial surgeries and talking with my radiation oncologist about the “plan”….”you’re an odd case, Janis”.  Now really did that need to be said?  I mean, really, I’ve been living with me for almost sixty years, this is old news! (And a great story for another post!).

So carry on!  Thin skin is an emotional trigger for sure as we absorb so much more than those around us can ever imagine.  Don’t wear a coat of armor to protect yourself but do what works for you to find the beauty of life. And with all that we cancer patients are taking in, seek counseling if needed.   #melanomatheskinwerein #thinskin #cancer

We can-cer vive!

Janis