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

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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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

 

In An Instance

via Daily Prompt: Complication

Word to the Wise

Words, whether written, read, heard, or said, are powerful.  The power brings emotion; joy, sorrow, concern, abandon, love, hate are a few of the plethora of feeling that comes from the word.  Words can also bring complication.

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If old enough, we remember where we were when we heard of J.F. Kennedy’s assassination, the words stunning the adults around us.  Or perhaps it was learning of the 9-1-1 tragedy that brings us to a time of grief and sorrow.  Martin Luther King, Jr.’s speech, “I Have a Dream”, or hearing your baby cry out to you for the first time brings tears of joy.

 

Tilt-A-Whirl…or Was That Tilt-A-World?

We’ve all had personal conversations, bringing joy or sorrow, into our own lives.  Do you remember learning that you had cancer, or perhaps that a loved one did?  The c-word is a tough one in my family as cancer is a prolific taker of lives for us. We have waited for information, finding out about cancer diagnosis, and learning how to readjust to the complication cancer brings to family and friends.

For me, after a routine checkup with my doctor in 2015 and my questioning a worrisome spot I noticed on my face, it was on to a dermatologist.  Always healthy, I was good with all of this, no worries and no fear, and then…a friend…said “Oh, a biopsy?  Well, that is a terrifying word that none of us want to deal with.”  YIKES!  Now I was nervous. Amazing how the power of words can skew our thoughts “in an instance”.

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The dermatologist visit went well and biopsy done, no worries, right?  Until the phone call. “In an instance”, my world tilted in a different way. “Your biopsy showed melanoma.  This is very serious and I can suggest an oncologist, a surgeon, and some other medical professionals you will need to help you.  Janis, this is very serious.  You could die if left untreated”.  I’m not sure I even heard another word, the loud crashing of cancer and life’s complications roared through my head.  Wait!  This isn’t how I planned my life to go.

It’s Really What You Do With It

Hope, that is what we cancer patients have. That and a lot of medical genius to navigate the challenges of such disease.  Processing a cancer diagnosis is a network of emotions, challenges, obstacles, and re-envisioning of life.  Those words, “you have cancer”, open the floodgates to so much; fear, anger, sorrow, to name just a few, come pouring over us.  Processing our new life, the complications of not-the-life you wished for, is probably the greatest challenge for many of us.

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Those words, change you forever, bring you to a new place.  Life is tricky enough, right?  It’s processing and learning how to incorporate this c-word complication that is crucial to our changing lives.  Finding the beauty in your modified life may just be around the next corner.  Bring your hope to the forefront and allow the happy energy to guide you because “in an instance”, you will help yourself and those you love.

#melanomatheskinwerein  #sunsmarts  #melanoma

We can-cer vive!

Janis