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

 

Metastatic Melanoma and Medical Melee

Life Lessons

We’re learning, every day, each of us in our own unique way. Think on this for a moment. What was it today that was that aha moment. Each day we are given an opportunity to take more in, to consider, and grow. Give yourself that moment to consider how to move forward, to sail on.

Melanoma and the health information available is growing, too. Cancer patients may feel overwhelmed with information, options, and cancer research which seems to grow faster than the speed of light! Some of us are lucky enough to be alive thanks to clinical trials and cancer research. Consider what you need or want to know, and then get on with living. Processing helps us to move forward.

Courage ebbs and flows; many refer to it as the medical merry go-round. Recently, one of the many scans that I have every 3 months sent me into a minor tailspin.  Cancer is such a head game! Totally expecting positive tests, my oncologist suggested further testing. No problem, I can do that, right? UGH. Everything turned out fine but below is example of that damn mind game that creeps in.

Waiting Is

Initially, confidence ruled and I knew it was no worries. And then sinking feelings, inspiration drowning, hope weighted down. That positive attitude twisting, careening in the flotsam of medical melee. Then, time ticked for an eternity as I waited to have the scan, waited for the doctor to come back from vacation, waited to know, waited. I’ve learned to negate the monsters of waiting, to keep them at bay.

Author Robert A. Heinlein wrote in Stranger in a Strange Land, “Waiting is”. Perfect, really, and the dangling of this thought encompasses the abeyance of disease, of cancer, of the abhorrence of living in a suspended state. I refuse to live as though on the bridge of the ship as it begins to sink, watching, waiting as though a bystander in my own destiny.

Navigating Your Course

How do you deal with those times, the uncertainties, the waiting? I’d love to hear how you cope with waiting, fear, and the head games. The mind knows what has been presented, fear can take us down. I choose to live, live deeply, and to fill my sails!

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Another lesson learned. Life with cancer is different and different forever, no doubt, but the quality of the voyage is ours to determine, to balance. Right your vessel, tighten your sheets, and carry on! #melanomatheskin  #cancer #melanoma #wecan-cervive #sailawaywithme

We can-cer vive!

Janis

 

Melanoma Marathon

Now Racing Through My Mind…

is the appointments, no longer in the distance but hurdles to be jumped in the next few days. I honestly, don’t see a finish line in my melanoma path, primarily because beating cancer is now a way of life. This isn’t a knee scrape that we put a band aid on and all is good.

Bottom line, I’m alive and I’m in the care of world class doctors at Dana Farber, and I’m monitored on a regular basis.  Do I want to be under such scrutiny? Hell, yes! While I’d love to have no medical anything in life, I have a ginormous medical life. This is what is keeping me alive and that is how I look at it. This IS life now.

Not The Fast Track

My journey involves traveling. Weighing whether my Stage III metastatic melanoma was worthy of out-of-state cancer treatment with the recurrence, it was obvious that was the track we were on. Road trips add another layer of angst but once you get the routine down its okay.

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A folder includes changes in medicines, printed schedules, and other loose paperwork. The notebook of questions, previous notes, and dates, etc. is essential. Identification and the dreaded health insurance cards are put in my “Maggie Bag”… a gift from a friend that keeps the small essentials together. There’s also a cribbage board in there, pens, chapstick, pain relievers, and special beads from the grandkids.

DSC01632All of this goes in the backpack, along with water bottles, snacks, and perhaps some knitting or reading.  I can’t do books on Dana Farber days as my mind wanders but a good magazine is easier on the brain.  Why the backpack? These days are beyond full so we bring what we need and usually don’t have to return to the parking garage until day’s end.  Wear comfortable walking shoes as procedures are not next door! What works for you on big medical days? I’d love to hear your tips! Please comment.

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Having a caregiver, if possible, is very important. Driving, listening to medical professionals, helping to navigate floors, offices, and labs, taking notes, asking questions, and just offering support in a very anxious situation is incredibly helpful.

Start Up: A Marathon with Hurdles

Dermatologists will examine every dot and spot. Included in the day is: blood work, MRI and CT scans, skin cancer oncologists, and the infusion team if all goes well. Beyond grueling as woven in to this time of poking and prodding, is the nugget all cancer patients keep buried in the back of their thoughts…”will the tests come back clean?”.

Health information is exchanged. I let my medical team know of my fatigue challenges, what aches, any new areas in question. In return, I will get preliminary results from all the testing, and perhaps a green light for infusion of Yervoy (imilimumab), one of the drugs in the clinical trial that I started last Fall.

Train For The Hurdles

Like each day, I take the medical days moment by moment. Each appointment is important, and brings me one step closer to the end-of-the-day infusion that may be enhancing my immune system. Train your brain to seek the positive when possible. How you prepare for the next appointment matters.

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Lead into your hurdles with hope and courage; it makes for a strong landing. Life is different for each of us, and we all have our challenges, our hurdles. Take each one as they come, and work toward a solid landing. Like the track and field runner, practice finding balance and positive head space. Where does your inspiration come from? #rootingforyou #cancer #melanomatheskin #melanoma #yippyforipi #inforthewin #Tuesdaythoughts

We can-cer vive!

Janis

 

Creepers and Stalkers and Trolls, Oh My!

troll-1916370_960_720.jpgWriting today is mostly therapeutic and I apologize in advance for my anxious thoughts. You see, I’m on a clinical trial for metastatic melanoma and due up for my next visit at Dana Farber Cancer Institute. I’ve done well to get on with life, take breaks as needed, and think like my pre-cancer self.

Without Exception

Today the thoughts creep in, a bit more than the usual cancer stuff. It’s always there, the c-word stuff, but I believe I’m exceptional! Exceptional at keeping thoughts at bay, exceptional at ignoring thoughts, and exceptionally exceptional at creating an aura of life is good. Other cancer patients can relate to this!

Three months without my melanoma team, free to push myself through fatigue heavy days and achy joint night. Samplings of joy, love, and life finely sift through my new colander of life. Every moment is rich, alive, and mine for the living.

Whither Shall I Wander?

Prisoner in my own mind, my desire to stay in-the-now wanders down the path of next up. Next up means scans, tests, appointments with oncologists, dermatologists, and the infusion staff. These thoughts are like stalkers in my mind, no longer allowing me the freedom to be.

Plans for the trip to Dana Farber unfold, questions to be asked are written in THE notebook, the medical backpack is unpacked and repacked. Stalker thoughts are unavoidable and while this is not the travel adventure we anticipate, having the blue print in place becomes the norm.

Lost in Thought

Inching closer to the big medical day, it’s more of a challenge to ensure that my health information is current, that all pieces are in place. Racing toward a date that I’d rather avoid, troll-like nasties invade my head space. Ugly, worrisome thoughts greedily take up residence, regardless of how I attempt to evict them.

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Stay the course!

Feelings of balance and ideas of inspiration are mislaid; moments of hope are obscured as medical melee overrules. The unknown of the next medical segment may leave us feeling lost and filled with fear. Forsake those feelings as best you can as solace comes from love and understanding.

In The Know

The best cancer tip I can offer is that being organized helps. It may not sound like much but a medical backpack, a notebook, a caregiver…any or all provide cancer support. Know your schedule and print it. You will learn how to find all the offices, labs, and treatment areas; though it sounds odd, there is comfort in having a routine for your cancer trips.

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Words of encouragement found on my fridge magnet from Dana Farber Cancer Institute.

Days and hours leading up to your next appointments may be fraught with worry. Organize ahead of your appointments, shoo away thoughts of the unknown to make room for thoughts of courage. #braverthanyoubelieve  #melanomatheskin #melanoma #cancer

We can-cervive,

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

 

 

 

 

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