Vote Early, Vote Often

***I’ve decided to post this again. Infusion last week, fatigue this week. Please vote, whatever you believe in! It’s how democracy works! Elections matter!

Feeling the Blow

I’m already breaking a political promise; I vowed this blog wouldn’t get into my political beliefs. So like all those running for office, not all promises are kept! You see sometimes life changes our platforms, whether we approve or not! I’ve voted and hope you participate on November 6th if not before. I’d love to hear your thoughts on politics, voting, or cancer. Comments are encouraged and discussion most welcome!

boxer

After years of great health, I was dealt the first melanoma blow in 2015.  Determined not to have it be a knock out, I came back fighting. Until things didn’t feel right to me again, a facial excision left an area tender; my old boxing injury I joked. Except  something wasn’t right and I needed to believe in myself, to fight.

The Main Event (Round Two)

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Doctors didn’t believe me and so time went by; we cancer patients have a love-hate relationship with time. (We want more of it, though hate it when it means waiting on test results). Finally, I requested a biopsy; metastatic melanoma again and recommendations that we now go to the medical epi-center of Boston, Dana Farber Cancer Institute being our choice. I was in the big ring now.

I’ve mentioned my cancer before and will again, but not in the context of politics. I could be the poster child for pre-existing conditions. My skin, like yours, holds onto its history; its damage, whether it be sun or other sources is pre-existing. My metastatic melanoma could have happened as a child, or just a few years ago. It’s been two hard punches to the left side of my face.

So, my pre-existing condition just may have been lurking for years, waiting for the optimum conditions to let cancer, medical diagnosis, doctors and dermatologists, become the new normal in my life. I’ve always listened to my physical being, but we cancer patients feel we’re caught cold when going another round. Pre-existing, why yes I am!

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Saved By The Bell

Think pre-existing conditions aren’t relevant to you? Yes, I gratefully thought that previous to 2015. I agree that we want to cultivate hope and inspiration, not worry about the what-ifs that can drag us down with a one-two punch.  And any given day, you may be in a bout for your life, for your medical treatment.

Insurance discussion is a constant in our home, at our table now. I’m the lucky one because we have insurance to cover my clinical trial drug for now. At some point, we are going to make a decision on insurance expenses and/or treatment. Decisions are regularly made by people who can’t afford insurance premiums. Long before my health issues, I was deeply affected by those I love making tough life choices based on medical expense.

We Are The Champions

So, yeah! Vote early, vote often, but whatever you do vote! We’ve all fallen to the canvas a few times, all taken a few sucker punches. Life is like that. However you vote, at least you’re making a decision to participate, to get up and fight for what you believe in. An outcome, the decision, will be heard; if you vote, you’ve put it out there, given it your best shot!

Contenders, all of us, with our concerns and passions. Believe in yourself, have courage, and stay in the ring. There has never been a more important time to fill out a ballot. Voting is super easy and vitally important. I’ve taken to voting absentee; bringing the ballot home to research the questions and candidates more closely. Vote, vote, vote for what matters to you on November 6th (and wear your sunscreen;).

Next time, I promise not to talk politics. “And if you believe that, I’ve got a bridge…”!

#melanomatheskin #vote #melanoma #cancer #sunsavvy365 #Tuesdaythoughts #election

We can-cer vive!

Janis

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

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.

cards casino chance close up
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

 

 

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.

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

 

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.

weathervane
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