How Grief Can Resurface With a Second Loved One Facing Cancer

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The day before my parents’ 40th wedding anniversary, my father, Bill, broke his arm. What may seem like a simple, common injury, was not for my “larger than life” dad. For him, a broken arm was the beginning of an almost four year battle with multiple myeloma. My father fought through chemo, radiation, platelet infusions and even a stem-cell transplant. Devastatingly, we lost my dad on April 4, 2012.

Our family trudged through our first holiday without our patriarch only four days after my dad died. One of my nephews had his first-communion only weeks later. There was an empty chair at my oldest nephew’s high school graduation where my father should have been sitting, proud of his oldest grandson preparing to head off to college on a Division 1 golf scholarship. One of the biggest reminders he was gone, for me anyway, came in July of 2014 when I gave birth to my first child, Bill’s fifth grandson. I named him William, after his Grankie, the man he would never get to meet. The man who would have given him sweets after I said no. The man who would have let him have cake for breakfast during camping trips in the big RV. The man who would have loved him with a strength that moved heaven and earth.

You find a way to deal with the reminders. They don’t hurt less, but they become part of your new normal. It’s little things that hit you in ways you can’t explain. Sometimes, you’re walloped with grief and it sends you reeling backward so hard, you feel your breath escape your lungs and your stomach turn up in knots.

Hearing your 43-year-old brother say the words, “I have cancer,” can shake you to your still fractured, still healing core.

There was a certain ignorance I had when my father was diagnosed. First of all, I’d never even heard of multiple myeloma. It wasn’t bone cancer or leukemia or any other kind I had a passing familiarity with. Second, this was the first time my family had to navigate such a diagnosis. We had known people with cancer before, but they were friends or relatives that didn’t live nearby. While everyone is aware of how deadly cancer can be, I had never seen the effects up close and personal, and I don’t think it’s possible to understand them until you’ve watched a loved one deal with the constant sickness and pain that comes with the disease and its treatment. My father never let his family know how sick he truly was or what the doctors were telling him in terms of how his cancer was advancing, or how grim his prognosis had become. We thought he had a good chance of survivial and his decline took us all by surprise. His death came quickly after we learned the truth.

With a second loved one’s diagnosis, there is no ignorance. You are incredibly aware of the possibilities, sometimes so aware that all the possible “what ifs?” hit you so hard you feel bruised.

Fortunately (ironic using that word in relation to having cancer), my brother’s prognosis is good. We live in an area with amazing medical care that includes top hospitals in the country. People come from all over to seek help and we only have to drive 45 minutes. The oncologist believes my brother can avoid surgery, and chemo and radiation can get him cancer free. Treatment is going to be rough, though, and all the side-effects are to be expected: hair loss, nausea, feeding tube, etc. But in the long run, those will go away, and hopefully so will the cancer.

My brother is having lasers pointed at his face and medicine after medicine pumped into his system. The man who taught him to be strong, the man who could commiserate with his situation is gone. I cannot imagine what it must be like for my brother, going into treatment every single day, being told he has an amazing chance to be cancer free, and wonder why this wasn’t possible for our father.

Despite the optimism and strength of my brother and family, there are moments when the weight of my thoughts seems crushing. Even in the moments when I am not fearful for my brother, the grief for my father feels fresh and new. Even when I am positive my brother will kick cancer’s ass, I am reminded our father is gone. I am reminded my family is going through this again. Cancer took my father, and now it threatens to come for my brother. And while I am confident my brother and his medical team have a good chance, the memories of five years ago keep resurfacing, and I have to try with everything I have to push them back down.

Editor’s note: This story has been published with permission from the author’s brother.

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Thinkstock photo by: vadimguzhva

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Telling My Kids I Have Cancer

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I was diagnosed with cancer when my boys were 5 and 7. It is exquisitely painful to watch your children be confronted with a tremendous loss of innocence at such a young age, while at the same time breathtaking and inspiring to watch how brave they are in the face of uncertainty. For example:

When I initially was diagnosed, we waited to understand the treatment plan before telling them what was happening. I was concerned because they both knew my own mother had died from breast cancer before they were born, so I wanted to protect them from that fear as much as possible. Once it became clear that chemotherapy was going to cause me to lose my hair completely, we knew we would have to discuss the side effects of my new medicine, but I was still hoping to protect them from the C-word.

We sat them down to explain the side effects, and the first question out of my oldest son’s mouth was, “Do you have cancer?” Initially I was evasive, saying it was something like that. However, when he asked me the same question six weeks later, I knew he needed to hear it. Telling the boys helped us all, making it easier to undergo the five months of chemo prior to surgery.

It opened the door for them to express their worries and fears. They needed to know if I would die, when I was in pain, to express their anger at the cancer. My youngest took it upon himself to tell anyone who seemed curious, “This is my mom, she’s bald.” He was also very proud to tell people when my hair was starting to grow again.

The day before the double mastectomy, the kids had a half-day of school. This meant not only was I trying to squeeze in a full day of work seeing clients in my private practice but I also had to juggle getting home in time to take them off the bus, take them with me for the plastic surgeon to draw the surgery lines on my body, and pick up my husband from his work (since we only had one car) so he could drop me back off at work to finish meeting with clients. It was one of those days where if any of the timing were to go off, we would be in trouble.

At the end of the appointment, my amazing plastic surgeon turned to the boys and asked them if they had any questions for her. My oldest asked with a strained voice, “Will she die?” To watch them be vulnerable, brave, protective and honest about their feelings made me so proud of them. I knew they worried about me dying throughout the treatment process, and I was really impressed with the way they were able to talk about it.

So if you have children and you are beginning this process, be prepared for them to be quite intuitive. Keep it as simple as possible, allow their questions to guide you as to what they are prepared to hear and need to understand. Honesty with my children  allowed them to be more open with their feelings, as well as to keep the sacred trust intact.

Follow this journey on Creative Transformations.

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Coming Out, as Dying

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I am coming out, as dying.

In November 2015, I was diagnosed with stage four cancer. “Four” befour I even reached 40. Four. Cancer.

I am coming out, as dying.

Imagine being told you are going to die a painful death, sooner than nearly everyone you know, by several decades. Think about the pain.

Let me take you into my world.

In November 2015, I was diagnosed as dying. And while at first, I was open about it, like a door slamming viciously closed in the wind, I backtracked within days and eradicated any mention of the truth from all but my closest friends and family.

So now I move among the world, in hiding. I look fine. I seem to get sick more and sleep more than most people. And what is up with all those doctors’ appointments?

I am coming out, as dying.

Imagine living a life when you hear people say in a meeting, “When planning four the launch in 2020,” and the physical pang that vibrates through you, with the word four, and 2020, and knowing you won’t see that project complete. And the anger that it is being taken away from you, and the ridiculousness of wanting to see some ridiculous project come to fruition, and the knowledge you are alone in that room with those thoughts.

And then the deluge, “Is this what I want to be doing with my time? What else should I do? Do I really have a choice? How am I going to fund treatment? If money was really no object would I just travel the world alone seeing everything but in actuality just wake up alone in a hotels rooms scattered around the globe wondering how long until I die?”

Next thing you know you back in a conference room and you hear yourself saying, “I am sorry, what did you ask me…”

I am coming out, as dying.

Coming out for me is acknowledging my true self and the act of revealing my true self, my true thoughts, to the world, even if the world doesn’t like it, can’t handle it, or reviles against it.

Coming out for me is acknowledging the truth even if it means losing friends and changing the way the world interacts with me. It means having to deal with other people’s sadness, and damn sad eyes, and losing work because people think my dying means tomorrow. It means a lot of things, for another blog post.

There are a lot of reasons I have hid my dying.

And in hiding my dying, I have been hiding me.

It is exhausting to hide me… And I have plenty to exhaust me without this.

So, I am coming out, as dying.

I am dying.

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What I Learned at Young Adult Cancer Camp

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How did I get myself into this? Shooting down glacial runoff in class four rapids with nothing between me and drowning, but a plastic orange kayak? Me, whose idea of an athletic challenge is taking an intermediate yoga class instead of beginner. Obviously, I misunderstood when I signed up for kayaking camp. I had envisioned peaceful excursions along a gorgeous coastline. Nothing could be further from the truth.

Our first view of the river was from a bridge, where kayakers-to-be, including me and a bunch of my new camper friends, only know each other by nicknames. I’m Twisted, and there’s Herb, Peach, Wacky, Zena, Popcorn, Hendrix and Gadget. We looked down the ravine, water gushing, frothing around huge boulders. Herb looked at me and raised her brows, a cartoonish expression of exactly what I was thinking, “No way!”

The next morning, I stuffed both legs into a black neoprene suit that was tighter than any pair of skinny jeans.

“First we’ll learn how not to tip over,” instructed Pleaser. Keeping my body centered and still – that I could do. That I practiced weekly in yoga. But doing it in a rubber wetsuit strapped to a kayak, in water, was different. Be still, I thought. My body and the boat swayed from side to side. Calm. Steady. The water rose on one side, then the other. Find a spot on the kayak and concentrate on that. Near the head of my kayak were two words, First Descents — and I focused and breathed in.

We floated at the bottom of mountain canyons, the sound of birds drifting above, the snowcapped peaks glistening, producing the liquid ice that became our river. I could have stayed in those moments of bliss observing the sky reflected in slivers. Then our guides wanted us to move.

“Baby steps,” Slash said, showing us how to paddle, first one side, then the other, to go straight. I mimicked her motions, sliding my paddle in a gentle sideways eight pattern and glided a few inches, following Wacky and Zena through the sky’s mirror.

“Great job Zena, Twisted! Next step, turning.” Slash demonstrated again. Wacky, who’d been here before, followed in a graceful arc.

Shifting my bodyweight to the left, I mimicked Wacky, stabbing my paddle in the clear water. Immediately I began to tip, swiveled my middle, and returned upright. “Try again.”

Again, tilt, stab, swivel, upright. Again. Tilt, stab, SLAM. A thousand icicles pierced my cheek.

“Ok, this is how you get up,” Slash fell over gracefully, jabbed her paddle into the water and pushed herself back up in an instant.

“You try.” I pulled my paddle down into the water with me and tried to flick it up with enough strength to right myself. Nothing. “It’s in your body, you have to move, like you’re dancing — thrust!” she called. I stabbed, twisted and thrusted. Nothing but an inch or two. “Again!”

Three, four, fives tries and on the sixth, I flung upright. Then, just to be sure, I fell over again, and again, and shot myself up, practicing this strength I never knew I had.

You want me to purposely capsize, trap myself under my kayak? That was the next step. Slash and Pleaser made it look so easy, like a somersault, only sideways down through the frigid, suffocating water and back up to oxygen and clear skies. One tilt, a slight muscle shift and I plunged into the cold. Like jumping into unknown, time slowed as swirls of water rushed all around. The world above, wooshing sounds and floating words from distant conversations, disappeared. Pleaser had encouraged us to hang there for a moment, holding our breath. “Learn to get comfortable, so you don’t panic.”

Don’t worry about not breathing? Here, not breathing, taking a moment to pause, listen, feel, assess felt oddly luxurious. Like I had all of the time in the world.

What bolstered my courage while underwater was the distress signal, clapping the underside of your kayak. It made a hollow, echo-y boom. Our guides promised they’d be there within five seconds, grabbing a strap on the front of the kayak to roll us back over. Hendrix tried easing into a fast current. The tip of his boat sliced, he flipped. He was under, one, two, three, then boom, boom, and Pleaser was there, rolling him over.

“If Popcorn can do it with only one leg,” I told myself, “You can do this.”

We practiced capsizing, rescuing ourselves by kicking out, and rescuing others by rolling them over for the whole day. By the time we emerged from the water, I knew one thing: I was not going to die on this trip.

On day two, we tried some short white waterish rapids. Like going over a series of small speed bumps while riding a bike, they tossed me around a bit, pushed me forward and made me giggle like I was on a Tilt-a-Whirl.

“That was fun! How long until the next set?” I called over to Herb.

“You’re getting to like it, Twisted!”

Slash’s and Pleaser’s killer skills were matched only by their knowledge and experience of the river. We spent the next three days exploring different sections where the rapids range from class one, easy, to class four, difficult. Each morning, we started at a section we mastered the day before, then moved to bigger challenge.

The last day we started at the beginning, at that section of the river that we saw from the bridge. The jagged water ran two football fields. All of us floated, holding on to each other’s boats, at the top. One by one, we broke off. Each of us rode the rapids, as our fellow kayakers and guides clapped, hooted and hollered as we lorded over the river and our fears.

We came here to get out of our comfort zone, to learn something new about ourselves, and what we can accomplish. That’s the reason we all know each other only by our nicknames – to escape our usual lives for a while. My fellow campers and I were bald, chemo-addled, disabled in a variety of ways. And by graduation day, each one of us rode down something we thought was impossible only five days before. We took control of our bodies and our destinies in a way that we hadn’t been able to in years. At a closing ceremony around the campfire, we tied red string around each other’s wrists before we returned to doctors’ appointments, scans, blood tests and the uncertainty that lay ahead. Perhaps that was the greatest part of kayaking camp, feeling excited by the rough water ahead, maneuvering through everything blocking our paths, and seeing the calm waters ahead where we knew that we could just float.

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What 'Quality of Life' Means to Me as I Adapt to Cancer

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can·cer

‘kansər/ – disease; causing the body and mind to adapt, overcome, and embrace change.

Quality of life: What do these three seemingly simple words mean to you?

Someone who is living with a permanent illness which will impact their “quality of life” will hear this phrase from time to time.

Someone like me who is considered a “palliative care patient,” which is a polite way of saying my disease will eventually kill me, this term gets thrown around a lot, but do we ever stop to think about what it truly means?

I used to just see it as phrase. I used to see many things as “just phrases,” words put together to fill silences in sterile rooms to allow for some sort of relief from the inevitable uncomfortable points of cancer.

Until you live them, you are intimate with each word, and you get to know what each one will mean to you… you get to appreciate what kind of quality you’d like to live, and start to live it.

I am going to share my perception of these words, and hopefully… they will not just be words to you either.

This phrase, “quality of life,” is meant to bring a sense of comfort, a level of respect, a sign that no matter what the cancer is going to take from you – we are going to do our best to keep you comfortable while all of these changes take place, and most importantly… just keep you who you are.

There’s the first problem: expectations. If we don’t adjust our own expectations and expect this disease to change us, this will be the first disappointment, the very first of many tears, and the beginning of the harsh reality which is called life with cancer.

We cannot simply continue to live our pre-pheochromocytoma cancer, pre-adrenal insufficiency, pre-surgery, pre-treatment, etc., the exact same way we did before… right?

Well, I kinda did.

I think we all do in some respects, and that’s normal. The difficulty is realizing where you can no longer do so, and where you need to adjust your expectations.

I didn’t say give up there, did I?

Time to Adapt

So here comes the hard part, once you start to change… no one but you can prepare you for this.

The next time you hear “You’re so strong!” don’t shy away from it when someone admires your strength. Think about what it means to them, what it means to you, and how you have truly earned it.

So, you start changing and this “quality of life” thing everyone keeps talking about seems like a very far away ideal at this point…

“How am I supposed to have any sort of quality of life when this disease is doing nothing but take take take?

“I don’t even have a life anymore, so how am I supposed to have a “quality” one?”

“Everything I am doing is supposed to “provide me with better quality of life,” but after every procedure I’m left feeling worse and can do less”…

“How am I not supposed to lose hope?”

Fast forward a few months…

My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly “normal” to being completely bedridden for months and needing a wheelchair the rest of the time. That was the most surprising, and still is…

Overcome

Did I tell you how wonderful it feels to simply be a little more kind to yourself?

After all… how am I supposed to have any sort of life if I am not going to accept the fact that my life is different? Change is constant, and I need to be willing to accept that although my life is very different, it’s mine.

The fact that I wake up every day, is a beautiful thing.

The fact that I have woken up each day with a smile, and gone to bed each night the same way… adapting to each new circumstance, overcoming each new situation.

Most importantly, understanding that even the smallest victories are worth celebrating. Simple joys are to be found and appreciated everyday, because these “small” and “simple” things to someone else… likely mean the world to you.

Remember, although your life is different… it’s your life, and these are the things that make the quality of your living.

Embracing Change

Throughout most of my time advocating for my metastatic pheochromocytoma, I’ve chosen to share my own life. My hope is to help others come to the same realizations and learn valuable information about this disease that isn’t available to people like us, without having to also suffer along the way to get there.

Just in the last two months, having another treatment to control my disease has confined me to my upstairs bedroom, I’ve suffered the worst pain so far this disease has given me. It’s made me question my quality of life, since being palliative, I’m supposed to be as comfortable as possible, and enjoy my quality of life. Instead I’ve been writhing in pain, stuck in my bed, unable to leave the upstairs floor of my house.

It made me question… “Now how will we get through this one?”

And we did.

Because…

Cancer makes you adapt and overcome.

Months ago, my perception of having home care and setting up a bedroom on my bottom floor?

No way! I’m not doing that! Why would I do that!? Now!? I’m only 25 years old, I’m not putting a hospital bed in my living room, that will never go with my decor! (priorities)…

Remember those simple joys? Small victories? Well this was the greatest joy, a godsend, a massive victory!

I can now see out a window,

I have life fluttering around me,

I can see my dogs run around the house,

I can see my husband cooking in the kitchen,

I could choose a very pink blanket for my new bed,

I can walk to the kitchen and serve myself a drink or snack when I’m feeling well…

I was able to have a Christmas tree!

I can drift off to sleep right in front of my fireplace… watch the snow fall…

That smile? It was fading slightly for the first time when I was confined upstairs for all those days, it was still there… but it just wasn’t quite as bright.

That’s what quality of life is.

Those aren’t just words, this is my life.

And this smile? It’s brighter than ever now…

You, too, can adapt to your new changing situation, overcome your new challenges, and embrace the changes as they come. You just have to remember… your new life is exactly that, a new life. You must explore the beauty it has to show, the joy it has to give, and the blessings it has to offer.

Just remember, there’s no right or wrong when it comes to your life — as long as you’re the one who’s smiling at the beginning and the end of it.

Follow this journey at Pheo vs. Fabulous.

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When a Cancer Patient Confronted Me About My Hair Extensions

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The stress from caretaking had taken its toll. My hair, once long and healthy, had thinned and fallen out. At first in the shower where strands would cling together near the drain and again on my brush when any effort to make it look fuller only resulted in clumps left in the bristles.

A visit to my stylist began the conversation of extensions.

An opportunity to give my hair rest and time to return to health and fullness was just what it needed. She would take care of me, she said. After all, this was the friend in whose arms I cried when I lost my dad. It was she who took care of me when I needed to ready for his wake, it was in this chair she would slow down time for me and make it so I looked presentable for our final goodbye.

The next time in her chair would find me sitting and chatting as usual while she placed the strands strategically and expertly – you shouldn’t be able to see them, she explained. Nice extensions, she offered, was not a compliment. And so it began.

Every six weeks I would return to have them removed and re-taped; my own hair getting longer and healthier in its down time from the products I had piled on and the constant curling and blow drying to make it look … well… normal. There was nothing normal, however, about the last two years of my life. I had been powerless but to watch as the cancers ravaged the bodies of both my parents and then to be present as, passed away only weeks apart.

A full year had passed when my stylist had carefully laid out the extensions. We smiled over the length I had come in this time. My own hair was growing in healthy and strong; it wouldn’t be long until I no longer needed the extensions.

A woman, her head wrapped in a scarf, caught my eye in the mirror; she stood and made her way into our conversation. She was angry – extensions were made for people like her, she explained. Those who had lost their hair due to chemo, those who needed the hair to look normal. The women who donated their locks, she went on, did so out of generosity and love for people like her – not for people like me, who were stuck on their vanity and selfish. That hair – she pointed out – was meant for a wig so people like her could, for the briefest moment, glance in a mirror and see a time before cancer. A time where they felt beautiful and strong. Shame on me for stealing it from her.

It all spilled out then, her grief and her pain – the desperation to fit in – to belong to a society that put so much emphasis on physical beauty, the desire to be well and to be known as healthy. She was crying when she finished speaking, and my heart ached for her and her struggle. Her nemesis was breast cancer, and she was sorry – not sorry – for telling it like it was. Maybe I would think twice next time, she spat out.

In that moment, I was back at my parents’ house, standing behind my mom as she primped in front of the bathroom mirror. Her hair but wisps, thinning and falling out from the chemo. How she would try to disguise the progression of the cancer by styling it differently until even that was no longer an option. How she would sigh at her bedroom mirror at the bald spots and patches that threatened to multiply. How she wanted so desperately to hold onto that last bit of normalcy she felt with her hair.

I heard myself say, “Thank you for sharing your story” to the woman in the scarf. You’re right, I said. There were women who grew their hair long only to donate it out of kindness and generosity to those touched by cancer. But, I too had been touched. I told her then how I had to stand by and watch as cancer ripped apart my family, how brave my parents were and how in the end they would pass weeks apart. Just because I looked “normal” didn’t mean I felt it. I had been devastated by their loss and had been on my own path to wellness.

We held hands and cried together then, she apologizing – so overwhelmed by the tests and the treatments and now the waiting – that she just wasn’t herself. In that moment I was grateful for the opportunity to provide forgiveness and offer my prayers to this courageous woman who was battling such a formidable opponent. Hopefully, it made a difference.

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