What’s In Your…Backpack?

Just a quick note as I prepare for my next infusion…that alone is an assumption! There will be blood tests, spot checking, scans, and evaluations. It’s a time of mixed emotions; I always hope that I pass with flying colors and get the immunotherapy that may be saving my life, I also feel the anxiety of what might not be okay.

I’d really love comments from others on what you do when faced with challenges ahead. Do you take that nervous energy and just go out and have fun? Or do you take on a project to keep your mind and body busy, expending dark energy? Do you get lost in your worry?

And That’s Why It’s Called a Nervous “WRECK”!

A few days out from the process and it’s a rainy day. The beach walk I thought I’d squish in this morning was given a literal “rain check”. Travel bags are now packed, some small projects completed, and next up will be the cats! Wow, to the World Series but it also means no more Red Sox to keep me inspired. I prefer to have bills paid and administrative duties completed. Clean sheets are always a good thing. Diversion, good! Nervous? Hell, yes!DSC01632

All of this seems silly but in having things in order for now, I expend some tension. Doing that leaves more room for things I will need while at Dana Farber Cancer Institute; it’s my emotional backpack. We all have them and when cancer treatment is imminent,  it’s important to NOT fill my emotional backpack with negativity, nervousness, and worry.

Get Ready (by The Temptations)

Here’s a brief list of what I will put in my emotional backpack:

  • belief in a tomorrow
  • courage
  • hope
  • inspiration
  • integrity
  • love

Hokey as hell but in putting in positive feelings, there is less room for the emotions that drag one down. Sure, they are there (those scary thoughts), and yes, when I walk into the medical facility there is a pit in my stomach. Metastatic melanoma, stage III, is one deadly disease. I’m well versed in what I’m up against.

Choosing to bring all those positive emotions and desires with me gives me strength, strength to get through a long day.  I put a positive spin on something I never thought would be a part of my life; I believe that I’m part of something bigger and that satisfies my soul. Cancer research is imperative and clinical trials matter.

Balancing Act

Balance will be skewed on my medical day, no doubt. There is no way to discount the possibility of a questionable scan, bloodwork values, or other concerns. This is how those cancer cells are found, this is the chance we cancer patients have. Packing the positives in my emotional bag become the bulwark for whatever this trip brings.

Exhausting, the Yervoy infusion is only one part of the depleting feeling of cancer treatment. Finding your emotional infusion may take time, but look high and low; positive emotion may just be the reserve you need to pack. Take the time to discover what it is for you and how to pack it up for when you need it!

selective focus photography of balance rock
Balance is a building process!

We all need to have emotional reserves for challenges in life. I’d love to hear what works for you. Please share in the comments as we all will benefit from learning what to pack in life’s emotional bag! What works for you?

We can-cervive!

Janis

#melanomatheskin #wecancervive #cancer #worldserieschamps #cancer #melanoma #TuesdayThoughts

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!

boat deck leisure ocean

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

 

Genre, Cancer, and Book Bullying

Building the reading list!

Listing

What do you read? With company visiting, this is a common conversation in our home and one that always fascinates me. Titles, electronic or hard copy, are shared. Favorite library tales are discussed and everyone returns home with new lists, fodder in consideration of future reads, not all will be read but all will be considered.

Easy reader!

Hammock Reading

We are readers, my husband and I, with rare common ground. He sometimes enjoys light reading, and Robert Parker is his favorite mindless read when looking for something comfortable and non-strenuous. He tackles other things but loves a-re-read of Parker, The Ancient Child, All the President’s Men, and others. He is voracious, I dive deep into well worded writing. One we both enjoyed and have talked about at length is A Gentleman in Moscow.

As a librarian with a huge focus on family literacy, I am passionate about picture books and will always bring home a stack from my local library. I also love children’s chapter books that I can share with my grand-girl. I find this to be an enjoyable escape from the drama of being a cancer patient and the uncertainty that melanoma brings to the mind. This is my complete area of comfort, my hammock in the library world.

children of blood and bone.jpg

In working with young adults, I learned to love certain authors; currently I am reading Tomi Adeyemi’s Children of Blood and Bone; this title has shown itself in multiple reviews and Jimmy Fallon’s Tonight Show chose it for a summer read. Well, technically, it is the finalist of a handful suggested. With his promotion of reading and libraries, I knew it was a book to read now!

Library lover!

Reading In And Out Of The Zone

I’m out of my element with this book as I’m not a fantasy fan. It’s an allegory of the black experience, gods of color, and the belief of magic. I love it and highly recommend it! This is definitely a series in the making with movies to follow. Check out this interview with Tomi Adeyemi and I’m also loving that she encourages young writers. Thank you, Jimmy Fallon for this suggestion. Sometimes, it’s great to read out of our comfort zone.

So why blog about this and how does it relate to cancer? Reading takes on all forms; an engineer friend who reads technical matter, a non-fiction lover like me, or a light summer read that everyone loves. It’s all GOOD! Reading Matters! Recently, when getting scans at Dana Farber Cancer Institute, I asked a technician what she was reading. She joked and said she reads scans. We all have our focus and I’m grateful for that expertise. With an area in question on the CT this time, medical and professional reading is critical.

Awareness of discoveries, studies and clinical trials, and pertinent health information leads me to books and the latest in the field of cancer. AACR medical journal articles editor picks relating current cancer studies involving prostrate, breast, lymphoma, and other cancers are weighty reads, at best. For me, it’s an attempt to understand that which is not understood.

Beyond the Fantasy

But then, aren’t we all waiting for the cure; the magic beyond the fantasy, the scientific moment when healing takes place, when pain is replaced with hope, when that one child is given the reward of life for all his or her courage and efforts to be well. Cancer research is not a facile path, nor is the documentation. Reading snippets works for me; I leave the serious understanding to medical professionals!

Reading Matters!

Skip judgement and don’t be a book bully. People read for many different reasons. Escape/fantasy seems to bring more balance to me right now though next up is a non-fiction book I’ve been wanting to read by Tara Westover, Educated, another New York Times bestseller. So tell me, what are you reading and where do you find your inspiration? I’d love to add it to my list! #melanonatheskin #cancer #melanoma #bookreviews #readingmatters  #Tuesdaythoughts #whatareyoureading #librarylover #naturalskinrocks #wecan-cervive

We can-cer vive!

Janis

 

A Wrinkle In Time

Have you read it? Did you love it? Author Madeleine L’Engle wrote this engrossing novel, winning the Newbury in 1963. This travel through time and space is a delight and one I intend to return to again…and soon. Reaching deep with themes of death, social conformity, and truth, this children’s chapter book can be a whole new adventure read as an adult. Here’s an interesting take on this read from adults in a Mashable podcast.

wrinkle

 

A Wrinkle In Time is the first in the Time Quintet series. Right now, it’s resurgence is notable in relation to the release of the movie in February 2018. Every where I turn I see this classic and what a wonderful thing that is! But what does this have to do with cancer and melanoma?

Scans and Tessering

space

Well, here goes my thoughts on this and cancer patients and caregivers might be most able to relate to this. Time goes fast, time goes slow for all of us. I am learning to live in the moment, the here and now but what happens when you have a full day of appointments, appointments that will give you more time to enjoy life, or bring you to that place of worry when not “passing” the scans? Let me know how you deal with scan days.

My caregiver works with me as I submit to the surrealism of MRI, CT, any various dyes, drugs, and blood letting. Liquid hope is funneled into veins like water through a hose. Like A Wrinkle in Time, there is a sci-fi quality about my Dana Farber day,  lying in tubes hearing thumps or being directed to breathe and not breathe by mechanical audio direction. Big Brother, is that you? Meditation helps to keep me in balance and mindfulness reminds me that this singular moment of pain and discomfort will pass, too.

Each of us has our wrinkle in time, a place between reality and the unknown. Sensations of time and place muddle. Questions of belief and hope are only human, and that’s just fine, to feel human. Characters in the book find their time spent with tesseracts; this time travel is often physically painful and leaves them with anxiety, uncertainty. Sound familiar?

Parallel Universe?

time tunnel

Parallels between A Wrinkle in Time and our own cancer journeys are uncanny. Reality is a fine place though some days we feel as though we are in a time warp, part of a science fiction writing that brings us places we never thought we’d go. Balance tips  as our health tessering brings concerns to the forefront, our future looms closer. Living in the moment skyrockets out of reach as medical melee hurls us toward the future.

Madeleine L’Engle  states that “For me, this book activates both transparency and resistance. It urges us to open ourselves up to those hurts, those tribulations, those disappointments, those doubts, those uncertainties. All of which can be summarized as darkness. It walks us through that pain to a light within ourselves, sparking us to resist all that is not for our good and fight for a better way. Simply put, A Wrinkle in Time offers a glimpse of eternity”.

Not sure where I am with the idea of eternity, but I totally look for the light in each moment, and not the sun light! Find that light within yourselves and fight the cancer battle with courage. Not the journey we chose, but how lucky to still be on the trip! #melanomatheskin #cancer #awrinkleintime #melanoma #Thursdaythoughts

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.

DSC01634 (1)

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.

shoe

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