Tolkinesque Cancer Trek within The Great American Read

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Passion Between the Pages

Are you loving the PBS Great American Read? I am. All right, so I forgot to watch last Tuesday at  8 pm but other than that I’m loving it! Gazillions of book talks, promotions, displays, and story times later in my professional life, this librarian is truly loving this event.

Why you ask? I mean, there’s not a lot of bling, blang, or blood, so what’s so enchanting? How often do we have people read us excerpts, promote the words and authors they love, and remind us to read those books on “the someday list”? Interviewees are enthralled with the books they’ve read or voted for on the PBS list of 100; in hearing their thoughts, I’m excited about what to read next.

Inspiration comes from that which we know soothes our soul, and in reading books, that inspiration also comes from a story unfolding, though we don’t know where the reading will lead us. It’s a gamble as to whether the story will take us places we want to go. I’d love to hear your favorite book of all time and where it takes you!

Really? Another Reading List?

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The first book on the PBS list that I’m reading is A Prayer for Owen Meany which I’ve picked up from the library. Author John Irving completely captivated me with Cider House Rules so this is the next of his I’ve wanted to read. It’s proving to be a challenge as the clinical trial I’m on for metastatic melanoma leaves me too tired to read! With over 500 pages, I am laughing at myself with the 5 pages or so I read a night!!!!

BUT (that’s a big but!), the writing is rich, the characters I am getting to know intimately, and I’m finding the writing takes me to another time, another place. What better way to escape the world of cancer treatment, than to let the words take me away. Besides,  little Owen Meany has captivated my heart and I am sorry to think of his battles ahead.

Journeys Versus Battles

The Lord of the Rings trilogy is on the PBS Great American Read list. I read the first, enough to recommend it to patrons, and with so many books out there, this is my standard philosophy on book series: read one and move on! I loved the journeys Tolkien took us on but found the battles to be arduous, violent, and senseless at times.

I recently had communication with an acquaintance who mentioned the idea of journeys versus battles as we discussed the challenges of cancer. He wrote “I remember being part of a group working on a program for people living with cancer and the doctor who led this said he preferred to refer to this as a ‘journey’ rather than a ‘fight.'” Thought provoking.

tolkien road

This captured me; the concept almost alien but I wanted to love the idea of a cancer journey, or life as a journey with cancer being one of those bumps on the road. Somehow I was feeling Tolkienesque, maybe the accidental adventurer like Bilbo Baggins, on this cancer journey, working through incredible, mythical landscapes with help from some amazingly, magical medical staff. I love to travel so this sounded great!

Uphill Battles

 

BUT (this is a bigger but still!) I don’t agree! The idea of cancer as a journey is upbeat and positive; that works for me! The reality is we cancer patients do battle each and every day. We fight back the demons in our minds. We warriors do surgeries, radiation, clinical trials, and defeat the evil darklord, cancer. This is OUR fight against evil!

Like Tolkien’s epic series, we cancer patients are never sure what is around the next corner. We learn to enjoy the time between peril, we battle our Smaug dragons, and fight for our treasure (not a mere golden ring), but time. Some of us lose our battles to time, some of us continue the fight.

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Yes, the analogy of a journey is a reasonable one, just fraught with battles to be won! We do our best to not get stranded in the battles, and must prepare with courage for each assault. Our journey may be a bit more dangerous than some but we all have our demons to fight, dragons to slay. Working through this idea, I’m going with life is a journey, and cancer patients the warriors against disease!

Watch the amazing Great Amercian Read on PBS. MY very favorite book on the #GreatReadPBS list? It’s not the ones I’ve mentioned in this blog. Tell me yours in the comments and I’ll tell you mine!

#melanomatheskin #cancer #GreatReadPBS #melanoma #TuesdayThoughts #somanybookssolittletime

We can-cer vive!

Janis

Nobel Prize for Immunotherapy Pioneers; The Long and Winding Road

black car on road near mountains

The Road to a Cure

This past Monday, James P. Allison, PhD and Tasuku Honjo won the 2018 Nobel Prize in Physiology or Medicine for their work in cancer immunotherapy. For those of us cancer patients who live because of immunotherapy, this cancer research is critical and the award brings some sort of personal satisfaction.

By stimulating the inherent ability of our immune system to attack tumor cells this year’s Nobel Laureates have established an entirely new principle for cancer treatment.  Metastatic melanoma is the skin cancer that I have. I participate in a clinical trial and was randomized to receive Yervoy (ipilimumab) which works with T-cells to improve the body’s ability to fight cancers such as melanoma.

Accelerators and Brakes

red stop sign

James P. Allison studied a known protein that functions as a brake on the immune system. He realized the potential of releasing the brake and thereby unleashing our immune cells to attack tumors. He then developed this concept into a brand new approach for treating patients.

In parallel, Tasuku Honjo discovered a protein on immune cells and, after careful exploration of its function, eventually revealed that it also operates as a brake, but with a different mechanism of action. Therapies based on his discovery proved to be strikingly effective in the fight against cancer.

Allison and Honjo showed how different strategies for inhibiting the brakes on the immune system can be used in the treatment of cancer. Different strategies, but both accelerating toward a healthy future for cancer healing. I may be just a small mile marker with immunotherapy, but I offer GINORMOUS thanks to Allison, Honjo, and others who have advanced the cause, set us on a path. Here is the scientific background of their work.

Hitching a Ridearm asphalt blur close up

So how does any of this relate to me? Us? I’m thrilled because in doing my clinical trial, my primary goal has been to improve the study of cancer. I’m not sure how it works or not for me, but perhaps in working with the staff at Dana Farber Cancer Institute I’m helping someone else down the road as the cancer research continues to move forward.

 

Yeah, I want to rid myself of cancer but I passionately want to participate in scientific research. Medical “stuff” is not my thing but through this trial, my T-cells are being driven, hitchin’ a ride toward a cure. Maybe not my cure, maybe not yours, but somehow I feel a bit “noble” for being on the right road toward a cure!

monopoly

#melanomatheskin #cancer #nobelprize #melanoma #wecan-cervive  #nakedskinrocks #yippiforipi #Thursdaythoughts

We can-cervive!

Janis

 

Immunotherapy and Playing For The Win

Deal Me In

poker magician deck gamble
Some days we feel lost in the shuffle.

Wondering about immunotherapy? Some days, I wonder myself and I am participating! Dana Farber Cancer Institute is where I go for treatment of melanoma and the online library gives a good overview of immunotherapy.  Whether a cancer patient or caregiver, the amount of  health information out there is overwhelming. Take a good look at your hand, figure out a strategy, and play to win!

When first learning of the suggested path for my recurrent metastatic melanoma, I cringed. Never having interest in medical science, it all felt like one grand experiment. And now, one year in to the clinical trial, I would say “yes, yes it is one grand experiment”, and how lucky I am to be here to say that! It’s not luck really as there is a tremendous amount of scientific data and staff backing our choices.

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Chances

Knowing nothing about clinical trials (and why would I?), I did some research and felt that I “would like” to be on pembrolizumab (Keytruda) though there were three drug options in this study.  It seemed that there were some successes with this immunotherapy and the treatment period was shorter and more do-able as we traveled to Boston. Wow, was I surprised to realize I had not even paid attention to the fact that the study randomizes. In other words, I would get whatever drug the computer randomly chose.

ball casino chance gamble
Taking a chance in the game of life!

And The Winner Is…

Ipilimumab (Yervoy) which I will take for 3 years if all goes well.  Initially, there is an induction phase. Basically, for me, this meant going to Dana Farber every 3 weeks for a few months last Fall. At that time, blood work, scans, appointments, all lead the way to getting an infusion. Some times I was refused due to poor lab results or questionable health. Heading back north without the treatment was tough, a quiet ride with uncertainty about our game plan, wondering how to play this hand, and knowing there is no clear win.

Let’s ace this!

And then, to turn around and say, yes! Yes to trying another trip soon after because of the time constraints of the clinical trial. After the induction phase, visits are now every 3 months, a holiday in retrospect to the intensity of the earlier months. Basically, the same drill: blood tests, scans, appointments, which all lead to the last part of the arduous day, the infusion.

Infusion time varies. Mine is 1.5 hours and I am always relieved to start the infusion, knowing I have passed the tests for this time, anted up with hope. It all starts with an IV port for various tests and at the end of the day amazing infusion nurses check and re-check everything, hook me up, and I take it all in, every drop of hope. By the way, this immunotherapy is not a personal cocktail but is prepared based on my weight for that day.

Parameters of this drug research frequently remind me that this is about finding answers, about learning from the 1,300+ candidates and there will be winners and losers. This clinical trial is for 3 years though I can drop out at any time. The medical team will continue to evaluate me based on the length of time I did the infusions. So far, I march forward or should I say drag forward celebrating one year of immunotherapy next month! The side effects are tough for me and feel heavier this time. How are you doing with your treatment? Please comment on your challenges!

As I mentioned in an earlier blog, immunotherapy is not chemotherapy.  A Cancer Today blogpost writes that immunotherapy is progressive treatment though the side effects are relevant and more tangible than previously known. There are many options depending on the type of cancer and the study.

Yippi for Ipi, Playing the Hand You’re Dealt

Research shows that Ipilimumab has success with melanoma. The website also states “YERVOY will not work for every patient. Individual results may vary.”-I get it, the disclaimer, and I choose this clinical trial for a couple of reasons:

  • I’ve got things I want to do
  • I hope this research will help another melanoma patient
  • I’ve always believed in paying it forward
  • I think I may be more able than others to tolerate the side effects
  • I will be followed and watched for several years

I could just skip the trial at Dana Farber because Ipi is approved for some stages of melanoma (meaning I could receive treatment closer to home). When randomized I chose to continue because yes, selfishly I want to live and think I have the best team in the world, but also because I want to participate in the study. There’s nothing pretty or glorious about this and some days the deck feels stacked. Bottom line is I want to keep playing. While some see this as a gamble, I know it’s a chance to win!

cards casino chance chip
Play for the Win!

#melanomatheskin #melanoma #naturalskinrocks #yippiforipi #cancer #Thursdaythoughts #playforthewin #immunotherapy

We can-cer vive!

Janis

 

 

6 Things You May Not Know About Melanoma

Breaking News

Some of you may remember a time when breaking news meant something intensely serious was happening. When J.F.K. died I was watching some morning show while my Mother ironed (another concept that dates many of us!). I remember it vaguely as I was young; my mother was crying and that felt like breaking news, like something had broken because it had.

Breaking news today, well that’s an occurrence that we no longer pay attention to as it has lost it’s earnestness. Breaking news is everywhere, everyday and no longer has any significant value. That leaves each of us to determine what to watch, what not. Like the friend who is never quite honest, I’ve tired with the uncertainty of the news and the shortage of information, and the lunacy is abundant.

BUT…

Melanoma_Awareness_Ribbon_alternative
Watch for spots

There are things you may not know about metastatic melanoma, a type of skin cancer, and I feel it is breaking news to inform you with a few short hits on what we know at this point. I save the most interesting for last so keep reading! There are many misconceptions about melanoma, so here’s a basic list of health information:

  1. Melanoma is deadly so be sure to be aware of the abcde’s of melanoma. Do skin checks and be #sunsmart.
  2.  Basal cell and squamous cell carcinoma are considered non-melanoma skin cancers. Read about them here at Web MD. While they are skin cancers, they do not turn into melanoma.
  3. Cancer resources for skin related disease can be found in online resources such as the American Academy of Dermatology Association. The photos may help but don’t let that be your guide. Like the shirt that you bought online that turned out to be a completely different color, your skin cancer may not look like digital photos.Be wise and see a dermatologist in person.
  4.  Depending on the staging, melanoma is not a quick surgical removal. Possibilities include excision, plastic surgery, nuclear dyes (the most painful thing ever) to find lymph node drainage, radiation, and a plethora of scans and tests.
  5. Pay attention to the UV Index – the sun is powerful!

And Here It Is…The REAL Breaking News!

   6. Melanoma does NOT react positively in chemo treatment.

Yeah, that’s the big news. it may be used to relieve symptoms of this aggressive disease, most commonly for Stage IV patients. Cancer treatment is equated to chemotherapy and guess what? That’s not always true! I’ve had people say things like:

  • “Wow! You must be getting a light dose. You haven’t lost your hair”
  • “You look really healthy compared to other people I know who’ve been on chemo”
  • “Why are you fatigued if you’re not receiving chemotherapy?”

My cancer-related fatigue is from a clinical trial that I participate in and I receive the drug Yervoy. The study compares Yervoy to other drugs such as Keytruda used for metastatic melanoma. At this time, there is no cure for melanoma and I hope that in participating in this immunotherapy research, that someday there will be a drug or series of drugs that can reduce the death rate for others, and not be filled with risks and side effects.

Visually, I do look like myself and I believe I will heal. Fatigue is intense at times; not that I need to nap but I feel like the a horse pulling thousand pound weights most days. Aches are challenging me more over time, and I’ve been offered steroids to alleviate the pain. I’m not ready to put more drugs into this soupy/saucy mix but I’m close.

Every day is a great day. I only mention some of the melanoma cancer tips because there are many misconceptions. There’s a lot going on inside some of us though it may not show! I’ve learned to not judge a book by it’s cover in a medical sense now that I have medical turmoil within. Inspiration also comes from within, so look beyond all the cancer craziness, find your courage, and bring that to the surface and let it shine! #melanomatheskin #getnaked #melanoma #cancer #yervoy

Thanks for signing up and please do share your thoughts as this is how we learn, grow, and find hope!

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.

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