Revisiting My Cancer Journal, 30 Years Later

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When I was diagnosed with brain cancer as a young adult, I remember thinking, “What would I do if I could survive 10 more years? How would I change? Who would I become?” As my treatment progressed, I tried to answer these questions through journaling. Now 30 years after my diagnosis, I used the anniversary to look back at what I wrote.

One thing I found is that I wasn’t concerned with writing beautiful essays or eloquent entries filled with imagery. Instead I was a list-maker. My old notebooks are filled with my ideas about how I planned to create a better, healthier, version of myself. As it became clear that my treatment was working and that I really might have 10 more years, or 20, or even 30, I rebuilt my life with these bullet points in my journal as my guide—my insights and objectives; the words of inspiration I heard, read, or discovered within myself; the emotions I held in my heart that I poured out on the page; my limiting beliefs that I aimed to shed and those aspects of myself I wanted to change.

Here are some of the things I wrote:

1. Believe there is enough time.

After my diagnosis, I couldn’t shake the idea that I wouldn’t have enough time to do everything I wanted to do—whether in my whole life, or within each single day. I loved life (and still do!) and have so much to accomplish. It wasn’t until I began to realize that “not having enough time” was just a construct—just a belief I could change­—that I stopped rushing to cram so much into every day and starting accepting my experiences and accomplishments for what they were. When I stopped rushing, I found that every experience had more meaning—that these things I could have rushed past held far more richness than the next hurried thing I had been rushing toward. By slowing down and sometimes doing less, I got more.

2. Allow yourself to be selfish.

Cancer allowed me, for the first time in my life, to focus on myself. Cancer gave me permission to say, “I’m important” and to say “no” when I needed. I let myself “eat dessert first” and not feel guilty about it. Now in my life after cancer, I try to realize I still have the right to make myself a priority. It took being sick to let myself come first.

3. Being positive is not being “up” all the time.

At first, I coped with my cancer diagnosis the same way I coped with other difficulties in my life: By not letting myself feel my emotions. I had to rally, be in charge, solve the problem, stay positive! Eventually, through my journey, I learned that being positive wasn’t just about being happy or strong. For me, being “positive” meant realizing that I could impact the course of my disease. When I finally let the tears come, that’s when my emotional healing started.

4. Put yourself “out there.”

I know firsthand how isolating illness and the emotional recovery from illness can be. Without letting others know what you need or what you think or feel, all they can do is guess. And they usually guess wrong. Being yourself—being real—gives people something to relate to and draws them in. I desperately needed this connection during my cancer journey, and putting myself out there as myself was the only way to find it.

5. Define the meaning of illness.

At some point, many people facing health challenges ask, “Why me?” I know I did. In fact, I love this question because it’s a doorway into exploring the things illness can actually bring to your life. For me, my cancer gave me freedom to choose the life I wanted to live. My mission became to know myself well enough to be who I am in the world. And from that day, I have sought to understand the complexity of who I am and what makes me, me so that I can be authentic in my relationships and my life. My cancer experience helped me to discover what “me” meant in the first place.

It’s hard to believe I began my fight against brain cancer 30 years ago. Now as I look back at what I wrote, I truly believe that the process of introspection I set down in my cancer journal has helped me. Today, cancer remains a part of my identity, and I am proud of it. While it forced me to change, it also provided the opportunity to rebuild myself with consciousness and intention—to free myself from who I had been so that I could become who I am.

Sheri Brisson is founder of the site DiggingDeep.org.

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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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The Lady Gaga Song That Reflects My Experiences With My Mom’s Cancer

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As a fan of Lady Gaga, I was excited to hear she debuted a new song during her recent Coachella festival performance. When I heard “The Cure” for the first time, it sent chills up and down my spine. I was moved to tears. It reflected my how I felt and what I experienced with my mom’s cancer.

In the first and second verses, Lady Gaga sings about helping someone she loves, as she can, whether it’s by helping them undress — “…’cause you’re tired,” or “Rub[bing] your feet, your hands, your legs.” There have been times when Mom is so tired, or ill, that I’ve helped dress her and given her massages to help ease her pain. During the times when I struggled with my fibromyalgia, Mom would help me dress and rub my back. But, unlike my situation, in which my pain comes and goes, she continually struggles with her cancer and the limitations it puts on her.

Lady Gaga goes on to sing that she “May not have the fancy things. But I’ll give you everything…” As much as I would want to give Mom everything she needs, I know I can’t. There are so many out-of-pocket expenses for cancer that are not covered by the insurance, medicine co-pays, specialist co-pays, doctors/specialist who don’t take our insurance, medical supplies/supplements, groceries, orthopedic clothing, transportation, etc. While our family can generally cover her basic needs, there is still so much she still needs. It breaks my heart knowing that can’t be provided for her.

During the pre-chorus, Lady Gaga repeats the promise that she will give everything for the person she loves who is in need. She also promises, “I will be right by your side.” Though many people are affected by cancer, it still can feel isolating for the patients. No two people have the same experience, regardless if they have the same stage and type of cancer. But it can be difficult to cope with daily. Going through surgery, radiation treatment, and other medical testing can feel isolating and exhausting for Mom. I try to remind Mom that I’m here to help her, as much as she helped me when I was ill.    

To me, the most powerful part of “The Cure” is the chorus. “If I can’t find the cure, I’ll, I’ll fix you with my love. No matter what you know, I’ll, I’ll fix you with my love. And if you say you’re OK, I’m gonna heal you anyway.”

I wish I could fix Mom with my love, too. I would give all the love in my heart to heal her. One of the hardest realities of coping with Mom’s cancer is knowing my love alone isn’t enough to fix her. It’s hard to put trust in treatments that can both help control cancer, but also cause short- and long-term collateral damage. Mom needs them to survive. I must remind myself to accept this reality. For now, the best way I can help Mom is to keep telling and showing her that I love her and help her with the slightest request of help.

There have also been times when Mom has tried not to worry me. She has told me she was OK, although I can clearly see that she wasn’t OK. When Mom was first diagnosed with her rare cancer, and low survival rate, Mom told me the tumor wasn’t cancerous. It was just a mass that was going to be removed. No big deal. At first, I was upset at her for not telling me the truth. But I realized Mom was simply trying not to scare me. As difficult as it has been to cope with the reality of the cancer, I want to keep fighting by her side.    

When I shared “The Cure” with Mom, I told her it reminded me of her. Mom cried as she heard the song. It seemed like she struggled to speak as she shared, “What a deep and touching song… Lady Gaga is such a uniquely talented singer that can so easily express deep feeling, so beautifully… She must have given so much of herself, for someone that she loved, that had been very ill.”   

Cancer has helped me to both appreciate Mom’s sacrifices and accept that life is a gift. I’m grateful I still have time with Mom. I realize that someday I will have to say goodbye. But I just don’t want it to be now. I still need Mom.

Editor’s note: This story has been published with the permission of the author’s mother.

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Photo source: Lady Gaga’s Facebook page

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12 Reasons Why Children Who Battle Cancer Are Superheroes

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At CureSearch, we believe that children diagnosed with leukemia, rhabdomyosarcoma, neuroblastoma and more are superheroes because they battle one of the most the evil villains known to man — cancer.

To celebrate National Superhero Day on April 28th, we asked our dedicated staff members to share why they think children who battle cancer are superheroes. Here are their answers:

1. “Children who battle cancer are superheroes because they don’t let the villain they are currently facing alter their hope for the future.” – Mallory Z.

2. “Children who battle cancer are superheroes because they take on the challenge of treatment with grace, dignity and determination.” – Mary M.

girl wearing superhero shirt and cape with text there is a superhero inside all of us. we just need the courage to put on the cape

3. “Children who battle cancer stare down the baddest villain, and very often do it with a smile on their face in between rounds of dress-up and Candyland!” – Brecka P.

4. “Children who battle cancer are superheroes because they possess the characteristics necessary to defeat a villain like cancer; bravery, strength, compassion, optimism and willpower.” – Eric R.

girl wearing superhero shirt and cape with quote life doesnt give us purpose. we give life purpose

5. “Children who battle cancer are superheroes because of their unique traits, creativity, imagination and determination who must fight with all their might, through the longest of nights just to smile at the new sunrise after defeating villains in the dark.” – Amber M.

6. “Children who battle cancer are forever superheroes because not only do they defeat the evil villain cancer one time, but their powers remain with them for a lifetime as they battle secondary cancers and long-term effects from treatment.” – Kelli W.

boy wearing superhero cape with quote you're much stronger than you think you are. trust me

7. “Children who battle cancer are superheroes because they possess the strongest super powers that come from within. They are the strongest, the bravest, the mightiest of all superheroes!” – Erin. R.

8. “Forget leaping over tall buildings, these kids are superheroes by their strength, perseverance, and the way they still care for everyone else around them! I’ll be a sidekick for each and every one of them!” – Jennifer M.

9. “Children who batter cancer are superheroes because they demonstrate perseverance and grace through the battle.” – Kathy B.

10. “Children who battle cancer are superheroes because they fight with all their might to conquer the beast!” – Sarita S.

girl wearing superhero shirt and quote in a world of ordinary mortals, you are a wonder woman

11. “Children who battle cancer are superheroes because they never stop fighting! They change the lives of everyone they touch.” – Michelle M.

12. “Superheroes have no interest in being victims — they take on the bad guys head-on. They just fight. That’s what our kids do — they just fight.” – Mary B.

boy wearing superhero cape and quote the future is worth it. all the pain, all the tears, the future is worth the fight

Help us fight the villain cancer by donating toward lifesaving research. Help us give every superhero a chance to live a longer, better and healthier life.

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20 Survival Tips for Dealing With Cancer Distress

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At times, battling cancer itself is not the only hard part of the experience. In addition to physical and mental hardship, individuals with cancer often must cope with distress that at times may feel debilitating.

The moment a person is diagnosed with cancer, distress is likely to begin to surface. As an advocacy organization that works directly with patients, Good Days regularly supports individuals who not only need financial resources, but require the right information that will aid their specific health care situation. We asked our patient care specialists and the Good Days’ community of friends who have personally dealt with cancer to share their survival tips for dealing with distress. Here is what they had to say:

1. “Don’t deny, don’t accept, and don’t quit. Understand you still have control in more areas than you realize even though your life has changed.” – Nancy O.

2. “Appreciate the simple things: a sunrise or sunset, the sound of rain falling, the smell of fresh cut grass, or a wood-burning fire. Basically, some of the things that we take for granted but make life beautiful.” – Samantha C.

3. “Say the things you want to say, even if you’re afraid.” – Samantha C.

4. “Have a sense of humor and make a fool of yourself as often as you can.” – Samantha C.

5. “Create a scrapbook of life’s journey, experiences, lessons, quotes, and anything that has meaning to you.” – Cindy S.

6. “Find someone who is just willing to listen… especially on the bad days. The ability to express oneself can make a bad day better.” – Julie W.

7. “Find ways to laugh. Being with babies and kids can help, but also read joke books, watch comedy shows. Laughter helps more than it gets credit for.” – Randie O.

8. “Take daily self-reflection time where all distractions are turned off (phones, emails etc.).” – Sabrina T.

9. “Engage with local support groups to connect with other people who may have the same struggles and to know you are not alone.” – Sabrina T.

10. “Think positively.” – Sabrina T.

11. “Take yoga lessons or exercise if able. It doesn’t have to be high level, adjust to how you feel.” – Randie O.

12. “If the patient is well enough maybe a dance class to let loose and be energetic.” – Vanessa T.

13. “Have a book club specific to books about overcoming obstacles and dealing with hard times.” – Vanessa T.

14. “Take up painting. It’s a great way to express and release some emotions. Just remember, it’s not about being good but about expressing yourself.” – Jonathan P.

15. “Help others whenever you have the chance – you’ll find that you’re helping yourself in the process.” – Samantha C.

16. “If things start to feel out of control, take a walk and clear your mind. Don’t forget to breathe!” – Samantha C.

17. “Spend time around friends when possible – go out to lunch or dinner, see a play, talk about good memories. This takes you out of the ‘sick moment” and makes life normal even if just for a little while.” – Nancy O.

18. “Spend time with your spouse, children, grandchildren and loved ones. Appreciate one another and the time we have together.” – Julie W.

19. “Don’t be afraid to ask for help. The National Comprehensive Cancer Network offers a free online resource that helps people with cancer identify their levels of distress and also the experts with specialized knowledge and skills to help with emotional or coping difficulties.” – Clorinda W.

20. “This poem was shared with my grandfather when he was first diagnosed with cancer last year. He says it helps remind him that his cancer doesn’t mean the end, it’s just another page in his story.” – Rebecca D.

What Cancer Cannot Do

Cancer is so limited…
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit

– Author Unknown

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‘How Are You?’ Isn’t the Same After My Cancer Diagnosis

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“How are you?” you ask as we meet in the hallway.

“Pretty good.”

“OK.”

“Hanging in.”

I see the questions and surprise in your eyes.

“Wait, I thought you had cancer and were on chemo?” they might be thinking.

I could tell you how I’m tired, or how my fingers tingle from the cold, especially if it’s cold and rainy, how my hands are cracked, peeling, flaking, burning — tight and shiny.

Or how I have to catch my breath after getting up to cross the room.

I could tell you that sometimes I’m foggy or distracted.

Do you want to know about the occasional constipation? Or hurry calls? Probably not!

Or the weird, bland, sandpapery feel in my mouth — not a bad taste, per se, just kind of blah. Food just isn’t as fun.

How about the way my port sometimes gets tender, or irritated when my bra strap rubs against it the wrong way.

Or how when I’m wearing my pump how I have to deal with the intermittent buzz and the annoying pressure of the thick band of elastic around my waist, like I’m wearing Spanx, or a really snug corset.

And if it’s Tuesday, the day after my chemo session, how my cheeks will turn bring red and I’ll feel flushed for the rest of the day — maybe Wednesday, too.

And then there are the visits to the lab, where I get to be a pincushion for a zealous phlebotomist. Some of the bruises are legendary.

And don’t even get me started on the inability to shower for those days. Yeah, I do get to bathe, but it’s just not the same as the feel of nice, hot water running over my head, across my shoulders and down my back.

I’d like to swim, but the water at the pool is probably too cold — even in the so-called “warm pool.”

And I really miss drinks filled with ice, but don’t want to risk the same pins and needles in my throat that I get in my fingers when I pick up a soda can or grab something from the freezer case in the supermarket. Yep! I’m the one wearing gloves to grab frozen french fries out of the case.

You may have questions you aren’t asking.

No, I don’t have nausea and I still have my hair, but it’s drier now — and thinning, probably getting grayer, too, but that may not be the cancer.

I could tell you all of those things, but you may have already walked on.

I’m sure you care, but you may not want me to give you the “real” answers.

So I respond:

“Pretty good.”

“OK.”

“Hanging in.”

And you know what?

I am!

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