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.

training

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

Heir Apparent

Battle Royal

Yes, I sometimes think in dark places.  I mean with metastatic melanoma, scars on my face from excisions, radiation treatment, and now a clinical trial, it’s not all that hard to find your mind go murky. At times, I feel like the next in my family, riddled with cancer, to wear the crown of cancer.

bird crane balearica regulorum royalty free

A person of our American royalty, former First Lady Eleanor Roosevelt is the central figure to a fictional account of her life in the book, White Houses by Amy Bloom. I enjoyed reading this novel that imagines the life between Eleanor and Lorena Hickok though it blurred the lines for me between historical information and an invented story. I devoured the book knowing I prefer more factual portrayals of people of ER’s stature.

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One of my favorite quotes by Eleanor Roosevelt hangs on my fridge!

 

Royal Treatment

Why mention White Houses? Author Amy Bloom uses a description about saplings in the woods (forgive me for not having the wording handy). In comparing shaded saplings to people, the author relates the smaller trees will be stunted by those towering trees that relish the canopy, thriving on the light well fought for by competing trees.

An analogy that works eloquently for those of us with skin cancer. Do we now hide in the recesses of  dingy corners of our world? Should we resign ourselves to a tenebrous existence far from the beckoning sun? Are we relegated to be lowly saplings who never benefit from the light?

Those that reach for the light grow!

Hell, no! Shadowy thoughts like that are the last thing we need. Acknowledge those cancer moments, grab your cancer crown (a large brimmed hat for me!) and sun screen, and seek the light, seek the positive.

Use sun-safe habits and your #sunsmarts. Enjoy the things you love and keep solar mindfulness with you at all times. Take your vitamin D and find the courage to get out there! Light is metaphorical for illuminating the positive and also offers physical improvement when sensibly enjoyed. That doesn’t mean ignore your doctors!

Some People are…Well…A Royal Pain

Where did the light come for this blog? I just read a blog post where the writer stated we need direct sun and that sun screen is not good for us. Really? I know that the sun is essential to life; I get that in a big way, but really, no sun safety? Yes, that statement angers me because I GO TO THE DOCTORS, I GO THROUGH THE PAIN, I FIGHT FOR MY LIFE. I commented on that blog! The response explained that melanoma is a blessing. Really? No words here.

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Stand Tall!

Reach for the light every day. Open your mind, open your heart, and you will leave the gloomy thoughts and the darkness in the undergrowth. Don’t read trivial stuff. Do what you love and grow strong; become the tall tree.  #melanomatheskin #cancer #melanoma #readingmatters #becomethetalltree

We can-cer vive!

Janis

 

Birds of a Feather

Cancer patients or is that cancer patience? Ah, I’ve learned a lot about patience as I plod along hoping that each day on this clinical trial brings me closer to healing. Rather than live in fear, I have the belief that in being patient with the immunotherapy drug that potentially treats melanoma and kicks my butt, that I have a chance.

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Hope and inspiration might just come from odd places as we fight cancer and look for balance in our lives. I find that living in the moment is a good place for me to reside! Simple pleasures come and go, as do the trickier moments of scans, tests, and infusions. The natural world bestows the greatest moments of a-ha and reminds me of what really matters.

Life on the Wing

And so it is with the birds. Living where nature abounds, panoramic views gives ample opportunity for viewing. A plethora of shore birds arrive seasonally, while the hardier sparrows, blue jays, and gulls will tough it out with the rest of us year rounders.

Reading Round Robin by Jack Kent is a fun picture book and always a reading rite of Spring  bringing lots of laughs! Three robins nests in the rafters at our house this year and I’ve learned a lot from the National Audubon about the American Robin! What better way to be reminded of the hope of tomorrow than with watching life unfold.

Rule the Roost

Nest #1 appeared in May, and we barely noticed it nicely tucked in to the far end of the deck…not sure how many eggs there were, but if you look closely at the pictures above you will see two young birds. Flights ensued the day after this picture and they were on their own shortly thereafter.

Nest #2
Nest #2

Nest #2 came immediately after #1 on the busy, walkway under our deck. Long strands of grass and nest making material had me keen to this busy pair of robins. Four blue eggs later, we waited. With a 12-14 day incubation that felt far longer, we finally had one robin. I’ve been told that 50% hatch is normal. My grand-girl caught this baby bird on video early on, and I’ve watched this video several times. Life is amazing, right?

To Every Season

Nest #3 is in the middle rafters and contains 3 eggs. It’s another high traffic area so we put a flower planter over it to provide a privacy screen. One robin hatched the other day, one egg is cracked, and one looks to be losing its robin’s egg blue.

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This will be the last of the robins for this year. The weather will cool, the birds will leave, the landscape will change. I’ve taken the time to watch life, to have the patience to let it unfold. Meditation comes in many forms and be sure to take a moment to pause, find courage in your good moments, and let those positive thoughts take flight.

Thank you for signing up for my blog and let me know what you do to find those cancer-free moments. Stay tuned to learn about the empty nests!

#myhusbandwantsthedeckback #melanoma #cancer #Thursdaythoughts #melanomatheskin

We can-cer vive!

Janis

 

Matters of Life and Death…and Books, Of Course!

Immortality is not something I seek. How about you? Life is so amazing, and so challenging, too. It’s that balance thing which we live with every day. Live beyond fear and just live!

Sudden Death

My grandfather was run over and died, a best friend died far too young and wrongfully, a child died in a terrible accident. Unexpected death is tragic, shocking, and contorts the mind to make sense of it. Emotions are exposed, raw and beyond painful. Pieces never quite fit together again. Trauma and tragedy envelope the unexpected loss.

The one thing we know is that there is only one way out of this life. Is death more palatable for those who know they have only so much time? Would my grandfather have played his hand differently if he knew when his last day was? Would you?

A Fate Worse Than Death

Cancer patients live with the fragility of it all; diagnosis, stages, treatments, and even, survival rates. With my melanoma biopsies, options in life changed: is this deadly?, what is the prognosis?, and projects like getting my “things in order” floated through my mind. Some days, meeting an untimely death might sound easier, but then, you still have today!

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I recently read The Time Traveler’s Wife by Audrey Niffenegger. My husband has loved this book for some time; I have at last read it. The beginning was a bit slow and confusing, but I always like to give a book 50-100 pages to develop. And develop it does as Niffenegger creates a story, both intricate and believable. This title offers deep possibilities for discussion.Would I want to know what is ahead?  Would you? Is it better that we don’t know?

In reading this book, it reminded me of Natalie Babbit’s  Tuck Everlasting, a riveting children’s book that explores the idea of living forever. A town wide read for our small Vermont community many years ago, concepts of eternal life, the benefits of NOT living forever, and avoiding the process of aging were exposed with prolific conversation for all ages.  Read it with your child or on your own; maybe it is okay that we have an end to this journey we call life!

“Now Is Eternity;

Now is The Immortal Life” (Richard Jefferies). Find courage in the day that you have; be present now!  Human nature seeks hope:  in life and in living, in treatments and cures, in one day or one year. Courage lies in the belief of a tomorrow. Find your inspiration to keep moving forward and balance that with what you have right now.  Cancer steals time-give yourself what quality you can through meditation, creating positive moments, and making the best of this day. Easier said than done, but make the most of this instant.

On  my reading list- The Immortalists by Chloe Benjamin. Yikes! Another book about living and dying. What if we did know what day we would die? Fascinating to consider, how would you live knowing your exact moment of passing?  This is one of the titles that made Jimmy Fallon’s summer reading list suggestions and subsequent vote. It’s had rave reviews and will offer another window on life/death debates.

Windows into our future may not be the best idea.  These 3 titles glimpse into what “might” be, given that crystal ball. For me, it’s intriguing to play with the possibilities, but I’m a realist. I’m definitely going to read The Immortalists but for now, I intend to pause from ideas of time travel, death, and immortality. It’s not about fear today, it’s just about today, this moment, and about what is. #whatareyoureading #melanomatheskin #melanoma #Tuesdaythoughts #cancer #reading

We can-cer vive!

Janis

Feel the Heat

Riding the Wave

Wow! The Northeast has soared to places no New Englander has ever been…or at least in my neck of the woods. With mercury hitting 93 degrees in the shade on July 4th, it gave even the most avid sun lover reason to find relief! Finding parade shade in the morning was excellent, followed by some time hiding out in the almost-cool cellar, and then, choosing to be inside at the neighbor’s barbecue versus on the hot deck overlooking the ocean.

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Those in the south would think a temp of 93 is nothing, though we in the North tend to melt with anything about 75 degrees! How do you deal with heatwaves? I now head into warmer days with a plan. I pay attention to the UV Index most days because with melanoma, it’s just what you do.  There’s also a Heat Index chart and other heat safety information at http://www.weather.gov, all of which is very relevant right now.

Heat Seeking Miss

I use to love heat, the more the better as long as I had plenty of water…to drink and to jump into for relief! Beach days for sure, I’d find it tough to have work or other commitments on serious heat days.  Water adventures, be it lake or ocean, brought me to my mecca and the hotter the better. I always loved the approach of summer solstice and the sun days of summer.

 

I chose to never complain on scorchers because I wasn’t crazy about the deep freeze of winter; if I am going to complain, it will be about that snow crunching, nostril-hair freezing, #nodesiretobeoutside winter weather. I’m still not going to complain about the heat but phew, I am glad that today’s storms will clear the air.

Intense Sense

So, what’s changed so that I can’t take the heat? For me, a lot, though I hadn’t really noticed the trend. I’m a bit older so my body seems to stress a bit with temperature extremes. The clinical trial that I am on through Dana Farber Cancer Institute leaves me fatigued; I wake up fatigued, I go to bed fatigued. Lastly, I spend less time in the hot sun so it feels brighter, hotter, and takes very little to wear me down!

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Throw heat and humidity together, and for any cancer patient, elderly person, or others with no reserve, it means no way to re-charge. I’ll always love summer and the gorgeous weather that allows me to be out and about-living and breathing. Mindfulness is important when planning for fun in the sun; it makes summer celebrations wonderful when you keep options open for all!

Thanks for signing up for my blog and remember that sun safety! #melanoma #melanomatheskin #heatwave #sunsmarts #skincancer

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