Skin cancer is no big deal, right? I believed this as I continued to love beach days, boat days, and time outside from the moment I was born until a few years ago. I truly thought that I would never have skin cancer and if I did, it could just be removed in the doctor office and back to the beach we go!
Metastatic melanoma is deadly; more than that, the things we cancer patients go through should be enough to scare everyone out of the sun. Multiple surgeries, embarrassing spot checks with a group of dermatologists, knowledgeable oncologists recommending radiation to live, and choosing to be part of a clinical trial as there is no known cure for this disease. Does any of that freak you out?
Ignorance is Bliss
I’m hoping it does! It’s not me wishing you any of what’s become my norm, NONE OF IT! What I’ve noticed is that ignorance is bliss when it comes to melanoma. There is some sort of selective hearing; mostly, I find the family and friends can’t deal. I never preach, I never tell others what to do. I think I might be the poster child for what can go wrong and people don’t want to be reminded.
I still go to the beach, I still love the beach. Sanctuary, balance, and peace are found listening to the surf, watching the waves. I do it differently now. Beyond the usual sunscreen, I wear SPF clothing. If sitting, I keep moving position even though I’m under an umbrella. Yes, I even have a shade tent. I PACK…for the beach.
Sounds a bit much? This is life with melanoma. I tend to go to the beach for walks now versus the day. Cloudy days are my favorite. I check the UV index often, not out of paranoia but I consider it knowledge for my day. My love of boating is painfully not fulfilled any more. Spot checks and clinical trial fatigue are the norm.
Does this sound extreme? This is nothing compared to what I and others been through at Dana Farber Cancer Institute. This is my life, no complaints as I’m so very happy to be here! Whether patient like Kevin S. Anderson who believed his melanoma was one and done, or me learning to live differently with the hope of many more years, lessons about skin cancer are costly.
Life changing forever, melanoma is now part of me. While I am disease free (YES!), cancer brings a whole new mind set and melanoma a whole new lifestyle. Please consider what you can do to incorporate sun safety into your life. Sensible measures may save you from life altering melanoma.
Read about melanoma. Educate yourself about melanoma. Be afraid, be sun shy. Stay alive! And thanks for signing up to follow my blog! I love to hear from you in the comments!
Melanoma patients have to be sun shy. Does it mean I stay inside and watch the world go by? Hell, no! Modification is key to living the best life you can. Sun-safe habits are important and now integrated into my day. But have you considered night time in your plan? In the summer, that may be crucial to avoiding high noon sun time; as we fall back to end daylight savings for this year, we have a lot of darkness to consider!
Things That Go Bump In The Night
Okay so evening is not my strong suit. Immunotherapy drags me through my days and by the evening, I am weary from this new lifestyle. That being said, consider taking a rest during the day so you might be able to do a few of these things at night:
Walking is great and going for an evening stroll means you don’t have to worry about UV ratings. Wear what works depending on the season.
Nighttime gives us a completely different perspective. Enhance your other senses by using them! Allow your visual overload to relax, let the sounds of the night be your focus. Or your sense of smell, touch, or taste…have your bedtime snack outside by the fire!
Dress for the weather, bugs, snow, or whatever!
The Skies Have It
Consider your season and what you can do to get out after dark. Weather needs to be considered.
14. This meteor show, the Perseid Shower is a spectacular summer show. Seeing 5 meteors before 9:30 pm reminded me what a sight this is to enjoy.
Fall Brings Options Including:
15. Tell stories and have a bonfire. Read a passage from a favorite book.
16. Avoid light pollution when possible and actively observe the constellations changing as some such as Orion come marching back for winter viewing.
17. Space. com is a great resource for sky information and be sure to read the dates for the Geminid Meteor Shower, the brightest of the year in mid December.
18. When the moon is close to full or full, it creates a lot of light, so star viewing is not as crisp. Those naturally bright nights are a great time to find your way around outside and get adventuring.
19. Got leaves?! Make a pile away from tree, plop into your pile, and just look up. On a clear, chilly night the smells of Autumn along with night sky clarity will have you awestruck with the magnitude of beauty.
And Then, There’s Winter:
Isn’t it easy to hunker down and avoid the brrrrrr of it all? Push yourself each day to find pleasure in the night. Winter may be the most challenging; I know it is for me. The lack of light with daylight savings is abysmal. My best remedy is to get out, so gear up and do it. The winter nights are long and breaking up the doldrums might include:
20. Shoveling-Ha, you laugh. It’s a never ending project in the winter and why not chip away at it for a bit? Aches and pains are a reality with my clinical trial but I figure moving beats the alternative.
21. Reflection from the moon is intense during the coldest months. Dress for the weather, let the cold steal your breath away, and go for a walk, snowshoe, or cross country ski. It needn’t be long but that fresh air will give you inspiration!
22. Clear nights are perfect for stargazing. It’s cold out there so bundle up, grab your lounger lawn chair (it saves on neck discomfort), or lay down in a snowbank. Look up, look up!
22. Bright nights might mean building a snowman or decorating snowbanks with food coloring and water in a squirt bottle. Silly is okay because laughing is good for the soul and healing.
23. On a snowy night, step out and listen to the snow on your jacket, feel the wind, and stick your tongue out. Sometimes, it’s good to just know you are alive!
Finding Light In The Darkness
Modification is key to enjoying life when dealing with melanoma and other cancers. There are good days and bad days. There is pain, sadness, and loss. What do you do to find pleasure, even if you can’t be in the sun? What would you do if you could play after dark? Please do comment and add your suggestions!
Gift yourself moments like these; hope is found here. Build your new life knowing you have disease and create balance with the best moments. Cancer patients have challenges and those with melanoma have sun safety concerns.
After-dark adventures needn’t be long or complicated. Plan ahead, know the weather, and smile. Learn when the crickets chirp, when the moon phases are this month, and when that outdoor concert will be held. Courage comes in small doses and moonshine provides inspiration!
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!
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
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.
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!
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?
This blog idea has been a long time coming. There are hard parts with cancer treatment; there are parts that are nearly as tough as our mind makes them! It’s that balance idea and also, I’ve learned to not suppose, guess, or imagine how things will be.
This is written not to frighten, but to inform. It’s a brief description of my radiation experience in 2017. It’s taken some time to process this part of the healing. I’ve kept my mask in the basement, stumbling on it every now and then reminds me of how challenging this was and hopefully, how life saving it is. The pictures were taken the other day, just to show what the mask looks like. If you are considering radiation, remember each experience is unique. Ask me a question if you’d like!
Learning takes on many forms, and this treatment taught me that I don’t always know how I will react, that I am human, and that I am braver than I think. One piece of my metastatic melanoma treatment was radiation. After multiple excisions and healing, the time came for radiation. Conferring with radiation oncologists at Dana Farber, a local team was most sensible as treatment is Monday through Friday.
As a Mom and librarian, I’ve always enjoyed projects with children and teens. Mask making was a favorite, whether paper mache or natural construction. I’d never really thought I’d have my own face sculpted, much less my own personal mask!
This took place at yet another location; the measurements, the warm towels, the casting of my mask. Precision and professional knowledge are key; the medical staff of two worked well together, and in no time at all the drape of some mesh, fishnet substance formed a likeness of me.
Well, not really. My mask fit me but there was little likeness to the flesh and bones person that was to wear it. The real me had another lesson ahead!
Mentioned earlier, there are parts of treatment that we cancer patients don’t quite anticipate. Questions are asked, caregivers take notes and listen hard, but no oncologist, medical person, counselors, or others are able to understand the human reaction, the emotional element. Humans are unique individuals!
Claustrophobic tendencies are not me; I endure scans, MRIs, small closets, and tiny spaces with no concerns. On the first day with the local radiation team, more measurements were noted, the irradiation location exposed on the mask, and equations exchanged. No problem.
Turn of the Screw (by Henry James)
And then, while I lay on the platform they screwed my head to the table. I knew this was coming, I knew the process. Momentary, solitary panic only known to me ensued. Tense body parts, mind wondering how I could ever escape if need be, and a foreboding feeling in every inch of my body.
Fear was trying to drown me. to hold me down, so I pushed back with courage, the desire to heal, and hope beyond this damn radiation. The staff was professional, moving through their routines with more measurements, a warm blanket, and conversation to access my level of comfort. What great acting I did! This was the greatest mask of a lifetime, the emotional one!
Radiation treatments to my left cheek continued for weeks, 5 times each week. A friend had mentioned that he had found waiting room comaraderie in his Boston radiation treatment; my more rural setting meant less of that, though two of us passed each other daily, bestowing sincere well wishes on each other, smiles robust with empathy.
That Healthy Glow
Ironically, my face, the same one that has had multiple melanoma excisions most likely do to sun damage, was brilliantly red after just a few treatments. This “hot spot” focused most of the controlled dose very specifically. My mask provided boundaries for the radiation staff, a way to zero in.
Risks are many when considering radiation. For me, the lack of alternatives meant this was the next step in my path to being disease free. Side effects vary depending on the course of radiation; each situation requires different radiation calculations.
Treatment left me exhausted as it has a cumulative effect. My face was, and still is, super sensitive to the sun. I also have dental trays made with my dentist. Radiation damages salivary glands which helps protect teeth so daily use of the trays with fluoride may protect my teeth. Hearing is questionable as something has changed in that regard.
Radiant, Just Like Wilbur!
Would I do it again? Absolutely! I’ve always been one to shy away from various drug solutions and to work through to a healthier me. Cancer is different and fights back with vengeance, learning new ways to work around medical treatment. This time I’ve chosen to try all options that make sense for my metastatic melanoma because I need to kick this thing called cancer.
Radiation treatment was trickier for me than any other part of this process and I surprised myself with the emotional challenge of being so helpless (and literally stuck!) while the immobility was essential to safe treatment. Each day, each moment I knew it to be the right decision. I learned that each of us reacts differently and that I’m stronger than I think!
Inspiration came when treatment was over, my body whooped, my face fried, and my grandson gave me a hug. Sometimes that is why we go through the scary stuff. It’s really ALL about the hug!
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?
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.
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!
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.
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!
This time of year we reap what we sow, right? Well, not always. Choosing to focus on gardens this year, I ambitiously planted seeds, a lot of seeds actually. Mostly started indoors, seedlings were everywhere. My husband found humor with corn growing in the living room, along with a plethora of other seedlings. Hey, that’s where the sun is most prevalent in our home! While I mask from the sun because of melanoma, life needs sun.
The starting of garden ideas last January while poring over catalogs, morphed into purchasing Fedco seeds, and notes on what to plant when, which reminds me that I have yet to record the endgame of the garden. YIKES! This gardening thing is involved. Coming full-cycle, it’s time to consider successes, failures, and modifications.
Gardening is my thing, my husband the willing lifter and mover of that which this weak cancer body hasn’t the ommph to move. He easily accepts my need for help, though his favorite part of gardening is watching it grow! Greenery, life, and plentiful harvests remind both of us how beautiful life is, how simple things bring hope, inspiration, and balance; a meditation of sorts!
Nurturing the Sisters
One area of the garden was dedicated to the Three Sisters Garden, consisting of butternut squash, corn, and beans. The belief is that each of these plants sustain the others with needed nutrients. Additionally, the pole beans could grow up the corn stalks, the rambling squash could provide needed shade on scorching summer days. My sisters’ cancer deaths was the emotional piece driving me to create a nature garden honoring us!
As one of three sisters (along with a wonderful brother), this was the year to try it. Everything sounded so very easy. NOT! I had metza metz results and LOVE the concept of this type of garden. Throw in treatment, fatigue, weather, and suddenly, I have more than I realized to work on. What a great way to leave medical concerns behind. Somehow, win or lose, my soul was harvesting some sister love! The nuture was on, the experiment reminding me of my clinical trial. You win some, you lose some!
Corn was started in the house and did okay. I actually had it knee-high by the 4th of July. I grew bush green beans and Scarlett Runners to climb the corn stalks. The only trouble was the corn stopped growing! So we had tiny, inedible corn on short stalks that tipped over with the weight of the lofty Scarlett Runners! Winter squash did well though I still have many baby squash, too late to catch up to the larger, edible specimens.
Pondering the Three Sisters Garden, I know I watered faithfully, carrying buckets of water to the garden from the cistern. What I didn’t do was add much manure over the summer. The plants were close together and it seemed impossible to work anything into the soil. Wanna know what really worked with this garden? The idea of this: the simple concept of creating something to remind me of the nurturing and love that will always carry on with The Three Sisters. What are you doing to satisfy your soul? I’d love to hear from you!
Will I do this next year? That remains to be seen; perhaps a smaller garden ensues for 2019. But then, we did expand one area….and I’d love to see improved bounty… and the seed catalogs are coming out soon…
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
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 Ride
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!