Tag Archives: cancer story

Those That Were, Those That Are, Those That Will No Longer Be

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Joni, MyLifeLine.org member and breast cancer survivor

This is a guest blog post by Joni, a MyLifeLine.org member and breast cancer survivor. She shares her feelings on the eve of her mastectomy.

On the eve of my surgery, I have been saying goodbye. And not just to my breasts, although the loss of a body part/parts has definitely sent my thoughts whirling.

Life is a series of goodbyes. It is a litany of things lost, and others gained. I sometimes grieve the loss of my children at the ages they used to be: snuggling newborns, feisty toddlers, curious preschoolers; I miss their chubby, dimpled hands and soft baby hair and their wondrous discoveries. Yet I couldn’t be happier with who they are at this moment. And the thought of all the years left, stretching out before us with promise, brings me immense joy. I also miss: the various stages of my life-gone-by, the places I used to live, my family every time we have to part, the loved ones who have departed this earth. And yes, I will miss my “girls.”

The breasts that were:
My first breast-memory is when I was two years old. My preschool teacher was trying to comfort me as I cried after my mom dropped me off. With my head bowed, I stared directly into her two giant, pendulous boobies. My separation anxiety dissipated immediately and I ran to play with my friends!

When my own little buds starting coming in at about age ten, I was horrified. At the time, my favorite past-time was football with the neighborhood boys, and I was surprised and disappointed that my body had decided it was time to make me a “woman.” I put warm ace bandages around my chest in the hopes that I would never have to wear a bra. Hmmph.

Despite all my best efforts, I grew into a healthy C/D cup. I was actually quite happy with that, and they served me well, until I got pregnant. Pregnancy had the same effect on my boobs that Christmas had on the Grinch’s heart. Well, almost. His heart grew three sizes, my boobs grew four. And then there was breastfeeding. I was far from being a natural. For weeks, every feed was a struggle and my youngest had such a hard suck he left my nipple hanging by a thread. But once it clicked, I was so grateful that I stuck with breastfeeding. It still amazes me that I was able to produce the nourishment that fed my babies.

The best word to describe what was left after three pregnancies and a sum total of thirty-six months of breastfeeding? Deflation. “Tube socks with rocks on the bottom,” as my mom is fond of saying. My daughter once asked me why my boobs touched my belly button. To be honest, until this year, I had become a bit indifferent to them. I thought that the worst thing about them was that they were not too attractive. Hmmph.

The breasts that are:
I just spent a week with my sister and her newborn baby, and was reminded how beautiful that bond is between mother and child. The time I spent with the two of them during this magical period was remarkably healing for me. It was a reminder that no matter how difficult things get, there is always something wonderful waiting just around the corner. I loved every moment of that week: his sweet baby smell, his cozy body swaddled against my chest, his little piglet noises when he was ready to feed, even his dirty diapers. I loved watching my sister as a momma, a role that fits her perfectly. Seeing her breastfeed made me grateful I was able to do the same, despite the fact that my breast rebelled on me. And rebel it did.

Although it has shrunk considerably, I am still living with a palpable cancer. The tumor is a demonstration in immortality, a daily reminder of biology-gone-wrong and of the fact that if I didn’t get treated it would eventually kill me. I can’t say I’m sorry to see it go, but there is something sad about having a large piece of your womanhood go with it.

The breasts that will no longer be:
Tomorrow I head in for my surgery. On the left, I will be getting a modified radical mastectomy, which means they will not only remove all of the breast tissue and nipple, but every single one of my axillary (underarm) lymph nodes, the soft tissue under my arm, and potentially some muscle; on the right I will get a standard mastectomy. I should be in the hospital for one night and then I will be back in the care of my fantastic loved ones.

Tonight I’m saying goodbye. To cancer. To life before this moment. To my two friends who passed away on my last day of chemotherapy. To the person I was before this wild experience. And yes, to my breasts/boobs/knockers/ladies/melons/milkcans/hooters/moo-moos. Until we meet again…

About the Author: Joni is a happily married 41-year-old mom to 3 children (ages 6, 10, 12). She works as an academic pediatrician and feels that her job treating patients and teaching future physicians is a privilege. Outside of work, Joni loves running, writing, strategy board games, traveling, hiking, snowboarding, and hanging with family and friends. She was diagnosed with Stage 3 breast cancer in March 2014. In addition to fighting with chemo, surgery, and radiation, she’s given cancer an extra kick with exercise, a positive attitude, and writing about her experience on MyLifeLine.org

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Stephanie’s Metastatic Breast Cancer Story

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Stephanie, MyLifeLine.org Member

Stephanie’s life with metastatic breast cancer is unique. She was first diagnosed in 1991 and has been living creatively with it ever since.

Prior to her diagnosis, Stephanie lived a cancer-proof lifestyle. She was involved in natural medicine for many years and even worked in a natural foods store. A rare genetic disorder and an abundance of health issues throughout her life made her predisposed to cancer. Stephanie originally noticed a chain of lumps in her left breast that she said was hard to ignore.

When she was diagnosed with cancer Stephanie was shocked, but instantly adopted a take charge attitude that’s helped her throughout the years.

She reflected, “I think now 20 something years into it I have this incredible sense of wonder, like ‘Why am I still alive, when so many people I’ve met through cancer aren’t. What am I here for?’”

Stephanie tried many different treatments throughout the years, but said she hasn’t done as much chemotherapy as one might think. “I’ve done a lot of alternative treatment. In the conventional realm, I’ve done a lot of surgery and hormonal therapy,” she recalled.

Stephanie said cancer changed the landscape of her life.

“I went from working to not working. I went from partnered to not partnered. I went from low middle income to very, very low income. I went from physically fit to being disabled. There have just been so many changes. I went from being afraid of death and dying – to not,” she reflected.

Stephanie emphasized the importance of discovering who you are when you receive a cancer diagnosis. “Find out who you are. Make good choices that are consistent with that and find good allies in the medical world and in your personal life.”

She has also learned the importance of having good people in her life. Stephanie received help from many people to stay as independent as possible throughout the years.

“I recognize how much I need good people. A lot of them have been here all throughout and new people have come in,” Stephanie reflected. “I’ve developed many good friendships while living with cancer.”

MyLifeLine.org has been an outlet for Stephanie to communicate her feelings through her writing and to stay connected to friends, family and even strangers who’ve found her site.

“For me it is a way to condense or consolidate my feelings and thinkings about my experience so I can share it with a lot of people without having to hunt them down,” Stephanie said. “I’m very grateful to stay connected with so many good people.”

Read more about Stephanie’s inspirational story by visiting her MyLifeLine.org personal site.

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Humor with Tumor: A Lymphoma Survivor’s Story

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Dan, Lymphoma Survivor

Dan was an Olympic-quality athlete and active in triathlons, road races and half marathons. His doctor once said to him, “you’re the healthiest guy I know.”

He began feeling stomach pains and nausea while running road races and decided to get examined by his doctor. Dan was told it was nothing, but after hearing lymphoma survivor and former winner of the Survivor TV show, Ethan Zohn speak weeks later, he thought his symptoms were similar.

Dan decided to visit a new doctor and insisted on more testing. He was in a Target parking lot when he got the call; it was lymphoma. When Dan walked in the house to tell his wife the news she was quiet and he thought she looked guilty.

“I thought she ran over my Derek Jeter baseball,” Dan recalled with a laugh. “I looked at her and I said ‘you’re pregnant’ and she said ‘yes’ and we both started crying. We were stunned.” They had been trying to start a family.

Chemotherapy infusions started nine days later. “I was very at peace with the disease,” Dan reflected. “I wasn’t worried about dying; I was worried about not living. I wondered how it was going to cramp my lifestyle.”

Dan completed six rounds of chemotherapy. He and his wife kept a sense of humor throughout their experience, that Dan called ‘Humor with Tumor.’ He was on his sixth round of chemo while she was five months pregnant which led to some interesting coincidences, like sharing a bottle of anti-nausea medication; his from chemo, hers from pregnancy. When Dan finished chemotherapy he had to gain 15 pounds, while his wife gained 15 pounds from the baby. “My wife and I have never laughed so much,” he recalled.

The pregnancy was inspiration for Dan to beat his lymphoma. “I was confident that I was going to live and this miracle baby kept me going,” he said.

Dan used writing on MyLifeLine.org as a therapeutic outlet during his experience. “I wrote for no one but myself,” he reflected. “It was such a key part of my journey and hopefully my success story. It was an afterthought that someone would actually read it.”

He received support from a number of people; coworkers, fellow cancer survivors, and friends and family. Dan was also supported by a mentor through Imerman Angels. Although he had a lot of support throughout his journey, Dan also had to learn not to judge people who said nothing about his diagnosis. “Instead of thinking of the people who didn’t call, think of the people who did,” Dan said.

It was also important to Dan that his supporters stay positive and follow through when they offered help. “So many people use the phrase ‘I’m there for you if you need anything,’ but acting upon that is different. If you offer to do something for someone who has cancer, do it. That really builds a connection,” Dan advised.

Dan is now cancer-free with a healthy baby girl named Miles, named after the miles he and his wife had been through. “I’m going to look at the baby and say, ‘have I got a story for you,” he reflected.

Dan continues to share his inspiring story through speaking engagements and on his website, Humor with Tumor.

The Hairy Truth About Going Bald

This is a guest blog post by MyLifeLine.org member, Joni Hemond. 

I’ve always loved my hair. It is thick and wavy and a nice color. My few strands of gray have multiplied over the years but are still relatively hidden. I can wear it short, long, and any way in between. It is flexible and forgiving and generally looks acceptable, despite the fact that all I do is wash-and-go.

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Joni with her three children.

Knowing my hair is going to fall out completely is a strange thing. Personally I’ve mostly had hair styles that reflect convenience over style, but wonder now that I won’t have it anymore if I should have been bolder with my hair decisions. I’ve become fascinated with the way people choose to style it and color it and take care of it, with the way it can give you a small glimpse into someone’s personality, or make a huge statement.

I also have a new and interesting camaraderie with middle-aged bald or balding men. I study their contours, their scars, their moles, their divets. I wonder about their style choices: Shave all the way? Grow out part of it? Hair replacement? Cover it with a cap? Sunglasses on top of the head? Pair it with hipster eyewear and a leather jacket? As a woman, it’s a little more difficult to incorporate baldness into your personal style. I do have two advantages over my male counterparts, however: 1) mine will grow back and 2) I don’t have the added nuisance of nose, ear, and back hair sprouting up and demanding attention.

There was a radiologist at my medical school who had the strangest way of dealing with his hair loss that I’ve ever encountered. His only remaining hair grew in a half circle on the sides and back. He chose to grow out the above his left ear. And I mean he GREW IT OUT. Like three feet. He took that wall of side-hair and wrapped it around the top of his head like a turban. This was all well-and-good indoors, or on a calm, sunny day. My friend and I happened to walk out of the hospital behind him on a day that was very windy. Oh, boy. That flap of hair blew straight up to the sky despite his best efforts to contain it. Clever, but not an option for me (because, of course, I will have no side-hair to grow out).

A few years ago, my daughter Isabel, who was nine at the time, decided she wanted to grow her hair to donate it. I thought it would be a fun experience to go through together, so I did it with her. On Mother’s Day 2013, Isabel donated ten inches and I donated fourteen. Mine had to be cut off in two separate pony tails because it was so thick. Oh, the irony.

The treatment I’m on makes you lose your hair, pretty predictably by day 18 of chemo. In the counseling I received from my oncology team, I was told once it starts it doesn’t thin much, but rather just falls out within two to three days. My hair loss has not occurred in this typical pattern. I am going to share my shedding experience (so far), and I will give you a warning that my honesty may be a little bit too much information for some. But it’s funny. And I know you’re curious. Here goes.

Something odd happens when my sisters and I talk to each other on the phone. Our voices on the other end of the line trigger us to have to use the bathroom. It is a phenomenon I’ve coined “SistaLax.” Well, I was talking to my littlest sis on Day 15 of treatment (on speaker phone with her and her friend, no less), when SistaLax hit. I was still chatting as I sat down on the toilet so it took me a second to register the collection of hair on the edge of the seat. I thought, “Why in the world is there hair all over…?—ah, right, I’m losing my hair. But, wait, here?!?!” I informed my sis and her friend, and we laughed like crazy. Then I yanked the hair on my head and sure enough, out came a fistful. That was within 24 hours of my second chemo. And for the last five days, it has continued to fall out, one fistful after the other, with no clear end in sight even as I write this.

Several friends and acquaintances who have been through chemo shaved their heads once the hair started falling out, which was an empowering experience for them. I think it is a brave and beautiful thing to take control and own it like that. But I wanted to experience the hair loss, strand by strand. It is a reminder to me that this treatment process is raw and gut-wrenching and painful and sometimes ugly. It is a fight. I am battling something that would kill me if didn’t go in, fists up, and that is made evident by every strand that is lost. I study the tiny follicles, little buds at the end of the hair. I notice the texture and color and softness. I weave my fingers through what has fallen onto the countertop before I throw it in the trash.

Losing hair hurts. My scalp feels tender the way it does when you’ve had your hair in a tight pony for a long time. It hasn’t come out in clumps but instead has thinned all over, particularly at the front and sides. I currently have the worst style of all styles: a mullet with a receding hair line (complete with my widow’s peak, which is going strong). At first I kept a Buff around my head just to contain the shedding, and now I wear it to cover up the whole rather hideous look. I’ve kept my three kids involved with every step of the process. They each cut a lock of my hair before this all started, and have helped me brush it and pull it out, and massage it when it aches. Lucien, my five-year-old, has been the most involved…he even lays out paper towels on the side of the tub of for me to lay the fallen hair on when I take a shower!

It’s not fun, but it ain’t all bad. My oncologist put me in touch with someone who grew his hair out for four years in honor of his mother, who passed away from breast cancer. His friends donated enough money to have a wig made from it, of which I am the lucky recipient. In a few minutes I’m heading to a party my fabulous friends and family are having so I can get me some stylin’ head coverings. I can’t wait to give lots of “port hugs.” And the little things? No shaving, no tangles, no blowing drying. And a cheap, pain-free Brazilian.

So what have I learned about the way I want to be bald? I’m going to remember the process. And I’m going to rock it: bare or wigged, scarved or with a hat, the cute with the not-so-pretty. Sure, my hair will never be the same; then again, neither will I.

About the Author: Joni is a happily married 41-year-old mom to 3 children (ages 6, 10, 12). She works as an academic pediatrician and feels that her job treating patients and teaching future physicians is a privilege. Outside of work, Joni loves running, writing, strategy board games, traveling, hiking, snowboarding, and hanging with family and friends. She was diagnosed with Stage 3 breast cancer in March 2014. In addition to fighting with chemo, surgery, and radiation, she’s given cancer an extra kick with exercise, a positive attitude, and writing about her experience on MyLifeLine.org

What have I learned about the way I want to be bald?  I’m going to rock it: bare or wigged, scarved or with a hat, the cute with the not-so-pretty. Sure, my hair will never be the same; then again, neither will I.

Paige’s Squamous cell carcinoma story

Paige had no idea that losing her ability to speak would give her words so much more power.

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Paige, MyLifeLine.org member and Squamous cell carcinoma survivor

On the day she was diagnosed, Paige heard only some of what she was told. “I recall a few basic things the doctor said to me that day: ‘You have tongue cancer, half of your tongue will be removed, part of your arm will be harvested to make a new tongue, they will take a skin graft from your leg, you will have a neck dissection, tracheotomy, and a feeding tube.’ I am quite certain she said many other words of comfort and did not rattle those things off, but that is all I recall hearing, and I was devastated.”

The spot on her tongue that had been bothering her had already been dismissed as nothing by doctors, but once it started affecting her speech she sought another opinion. Speech had become painful, and despite being an otherwise-healthy, 35-year-old, single mother of three, Paige knew something was wrong. On March 28, 2012, Paige was diagnosed with Squamous cell carcinoma of the tongue.

How would she tell her children? Her family? Her friends? Not figuratively—not what words would she choose—how, literally, would she communicate without the voice she had always taken for granted?

Facing months of silence due to invasive treatments, Paige turned to writing. She explained, “I have always been able to express myself best in written words, so I just started to write about all that was going on. I realized I had to tell my friends and family about this diagnosis and I simply could not tell everyone one by one.”

A friend of hers who had also been diagnosed with cancer had used a blog to keep everyone informed, so when she found MyLifeLine.org, Paige signed up for her own free site. She wrote about the medical treatments, the surgeries, and the medications. She wrote about the pain—both emotional and physical.

She reflected, “My site was the only way to express myself and work through all of my emotions. I think that is why it is filled with such raw emotion and why people were drawn to it.”

Throughout her journey, Paige had loving caregivers assisting her and her MyLifeLine.org site was helpful to them as well. One of Paige’s caregivers said, “Not only did her blog help me stay abreast of what was going on with her cancer, Paige included what was going on in her mind. I was able to mourn the sad news away from her to then be strong in her presence.”

MyLifeLine.org was a lifeline for me during my journey. It was my connection to the world, my connection to my own self, and a place where I could be encouraged by others. I am still using the site and will always want it and continue to share my story. Every time someone asks me about my scars I tell them a brief version of events and I hand them the web address for my site on MyLifeLine.org,” Paige said.

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Donna

True Customer Care

MyLifeLine.org’s Customer Care Manager, Donna, shares her personal connection to cancer in this week’s blog post.

As I sit in the exam room waiting for the doctor to arrive, my mind wanders to the list of a million things I need to do today. I feel a bit annoyed that I have to wait. Doesn’t he know I have things to do?? At the end of my exam I am chatting with the doctor about my periods lasting for a month. He pauses and then says he wants to do an endometrial biopsy just to be sure there is nothing to worry about.

My scurrying thoughts stop as I try to focus on what he is not saying. What is he looking for? What should I be worried about? Afterwards, we say goodbye and I check out at the front desk. As I sit in the car, I start to wonder what it might be. Then I decide there is no use worrying because if anything is wrong, I will definitely be getting a call tomorrow.

The next day begins as any other day. I wake up, get the kids off to school and I return to looking for a job since I just left my previous job a few weeks prior. Mid-morning, the phone rings. It’s my doctor’s nurse asking me to come in today to talk with the doctor about my biopsy results. I freeze. My heart is racing. My mouth is dry as I somehow agree to come in to the office. As soon as I hang up the phone I call my sister-in-law who lives a few houses down the street. She agrees to go with me just in case it is bad news.

I feel like it is Ground Hog’s Day. I am sitting in the exam room waiting for the doctor but this time I am praying that it is not bad news.

Then I hear what I have been dreading…”You have cancer.” I can only sob as I think of my three little children who just five years earlier lost their Dad in a car accident. How can this be happening? They will be orphans. Oh God, no this can’t be. As I sit there and sob uncontrollably I hear my sister-in-law’s voice. She is trying to comfort me through her own tears. We are both in shock.

Everyone has a story. We never know who has been touched by cancer, whether it be personally, a family member or a friend. I have experienced the loss of my mother to cancer. I am a 23-year cancer survivor myself now, and I watched my daughter go through her own cancer journey six years ago. This is why I am so passionate about my work at MyLifeLine.org Cancer Foundation.

As the customer care manager, I strive to provide the best customer care experience because I never know what the person on the other end of the phone or email may be experiencing. I have spoken with many of our members and their guests who express how thankful they are for this site where they can talk about their feelings, cancer treatments, or share a funny story with their group of supporters.

The next time you call or email us, know that we care, empathize and are truly concerned about where you are in your journey. We are cancer survivors, we have walked in your shoes and we are holding out a helping hand as others have done for us during our journeys.

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Patricia’s Breast Cancer Story

Patricia wasn’t alarmed after she was asked to have a follow-up mammogram. She was still calm when they followed up with an ultrasound and needle biopsy, both of which she’d previously completed with normal results.

It wasn’t until Patricia was introduced to a nurse navigator that she realized her medical team thought she had cancer.
“I could’ve been knocked down with a feather,” Patricia remembered upon learning her diagnosis. “I never, ever contemplated having cancer.”

The tumor was small, but somewhat aggressive, and her medical team told her that chemotherapy was a choice. She had to quickly make decisions on whether to have a lumpectomy or full mastectomy and what treatment plan she wanted to pursue for her Stage 1, Grade 2 breast cancer diagnosis.

Patricia quickly gathered information from a variety of people to make decisions for her treatment. She met with a surgeon, collected advice from other breast cancer survivors and researched online to assist her with the decision-making process.

“I was totally overwhelmed by how much I had to learn,” Patricia recalled. “It’s almost like getting a Ph.D. in breast cancer.”

She ultimately decided to have a lumpectomy, intraoperative radiation and chemotherapy. Patricia was so terrified for her first treatment that she didn’t even want to go in the door. She knew she had to conquer her fear and although the chemotherapy was hard on her body, it wasn’t as bad as she thought it might be.

“I’m pretty stubborn. I’d say ‘I can’t do this anymore’ but I knew I had to,” Patricia reflected.

The number of people who said nothing about her cancer surprised Patricia. She understood that people often don’t know what to say so they say nothing at all, but now that she’s experienced cancer she has a better idea of what to say to someone facing a cancer diagnosis.

“Even a hug is better than nothing,” Patricia advised. “Just acknowledge that you care and that you’re there to listen if they need someone to talk to.”

Patricia learned about MyLifeLine.org through a coworker and remembered being completely overwhelmed with the amount of support she received through her personal site. She invited only the people she knew would be supportive to follow her experience on MyLifeLine.org.

“I was very careful about whom I let read my blogs on my site, but I had thousands of visits during the time that I was blogging. It was huge knowing there were that many people who cared about me, even if they didn’t write anything,” Patricia explained.

She used blogging to write about how she felt during the many ups and downs of her experience. “I really explored how I was feeling by writing. It was therapeutic. The feedback from friends was encouraging,” she reflected.

Patricia’s advice to those facing a cancer diagnosis is to maintain a positive attitude. “Your attitude is the only thing you can control in an otherwise uncontrollable situation,” she said.

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Coach George Karl reflects on life after cancer

George Karl and his partner Kim VanDeraa used MyLifeLine.org during George's head and neck cancer experience. They continue to be supporters of MyLifeLine.org and Kim serves on the Board of Directors.

George Karl and his partner Kim VanDeraa used MyLifeLine.org during George’s head and neck cancer experience. They continue to be supporters of MyLifeLine.org and Kim serves on the board of directors.

This week’s blog post is by  former Denver Nuggets head coach and MyLifeLine.org supporter, George Karl.

It’s been 4 ½ years since I finished my Head and Neck cancer treatment. My experiences and interactions have been filled with incredibly talented people and organizations, amazing cancer miracles and some stories that are very mysterious.

First my health is on a strong recovery but as a cancer survivor staying alert and aware is the best way to stay a survivor. The fact of what you eat has become a daily journey and I try to feed my immune system better and better knowing our nutrition is the biggest key to better health and cancer survivorship.

Committing to finding ways to help navigate cancer patients in their journey has been Kim and I’s strongest advocacy in the last four years.  MyLifeLine.org and their commitment to the cancer patient and caregiver have blessed us. Kim serves on their board of directors and seeing them grow and become stronger has been a gift.

My belief is that we are on the verge of some amazing cancer successes. Cures, improved treatments and partnerships are all very close to some spectacular findings and answers. My only wish is we would find more unity and more teamwork to all the talented people, doctors and committed organizations that I’ve meet and talked with in the last four years.

I hope that we in the future can find more dollars and innovation for the aftercare of treated patients. I believe this has been an area that has been left behind and we need to gift the cancer patient more love after treatment. His or her hand still needs to be held and given guidance on what their bodies are going through and how to be strong and confident in finding answers to questions after treatment.

It has been a great 4 ½ years of learning, but I today stand amazed how much work is still to be done.  Cancer is a mutation and we must constantly work to get ahead and stay ahead of its changing personality.  From stem cells, bone morrow, integrative care, navigation, nutrition and many more cancer situations, I hope to continue to grow and find ways to help the cancer patient. Many cancer patients have become better and stronger because of their journey. I know I have!

GEORGE

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Healing Spaces

This week’s guest blogger is Roberta Aberle, a MyLifeLine.org member. Born in Rapid City, South Dakota, but raised in Fort Collins, Colorado, Roberta Aberle has been surrounded by cancer her entire life. Diagnosed with the rare cancer, Primary Peritoneal Carcinoma Stage IIIC, on Leap Day, 2012; after a total hysterectomy in 2009 was performed to reduce her risk for developing cancer, Roberta has been both a fighter and advocate for rare, sub-types of cancer. “I’d love to see other cancers reach the level of awareness and fundraising that breast cancer has with the Susan G. Komen Foundation,” she says. Roberta has been on multiple treatment regimens since her diagnosis in 2012, with the goal remaining to see some phase of remission. Her treatment has included clinical studies, surgery, intraperitoneal/hyperthermic chemotherapy, but has also incorporated many holistic approaches such as journaling, meditation, aquatics and nutritional strategies. Her primary goal is to not only reach remission but to use her experience to help demystify the cloak around cancer for caregivers by speaking honestly and authentically about the insights gained living the role of a cancer patient.

In my travels this week, it was a huge reminder of how radical the pace of life truly is. Especially in places of mass transit, like an airport, the flurry of people racing one from place to another is astounding.  I used to be one of those people.  My life revolved around the next trip, the next big project, the next deadline, the next …. whatever.  I didn’t sleep enough hours a night, I worked too many long days, in fact, at this time of day on Friday, you’d sometimes still find me chained to my desk.

My weekends were ruled by all the errands and “need to do’s”, I would often say it was as if my weekends just ‘evaporated’ before I found myself back at work on a Monday morning far too fast.

It’s exhausting to even write about.

Then I got my diagnosis and so much of that life came to a screeching halt.  Of course, it picked up pace with other types of activities; tests, scans, labs, treatments, etc. And before I knew it I was back living a frenetic pace.  I even worked some days before my chemotherapy because I had a few hours beforehand.  That’s a little extreme even I can finally admit.

For some reason, this week I realized that I cannot possibly keep up with my old pace now.  I am too worn out from all of the tests, labs and appointments, too fatigued by the treatments, too weak from the assaults on my body.

But rather than feeling discouraged by these restrictions, I understand their purpose.

I need to heal.  I have taken in about as much chemotherapy as a person can and I kept right on functioning to a degree.  I have been out of weekly treatments for barely a month and yet I keep asking myself when I am going to feel stronger and more energetic.

Talk about expecting too much too soon.

This week I stumbled upon a variety of ways to help myself heal in the most unexpected ways.  Whether staring at a long stretch of road or even waiting out airport delays; there is the opportunity to focus on healing.  We have the power to create our own healing space in the midst of whatever surrounds us.  It doesn’t have to be a place, it doesn’t require tons of effort nor does it have to consume a great amount of time.

Instead of getting sucked into the stride of others, the nuisances of public places, the inevitable down time that comes with any commute, job or nearly any endeavor these days, I let my mind drift to a mantra or literally just focused on the purity of the moment to avoid the headache associated with racing around.  You don’t have to be able to go to a spa or sanctuary to escape the busyness of life. You can escape into your own healing space.

In flight, scrunched into a window seat, the flight oversold, overhead bins burgeoning and the requisite crying baby in the seat directly in front of me, I focused on the plumes of clouds that we climbed through, marveling at their majesty. The billows stretched as far as you could see, a virtual ocean of white, formations crafted from the swirling and fluid mist. It was like flying through a piece of art. The beauty of it brought tears to my eyes. Those big tears that literally cascade from your eyes and saturate your face.  I found a space to heal.

At nightfall with the satiny feel of cool linen against my skin, atop a cushiony bed with the comforting smell of the night air wafting in the window brought another brief moment to reflect on healing.  Breathing in the scent of fresh-brewed coffee before turning on any technological gadget, yet another space to think about healing.

Woven in throughout the day, in the simplest of acts, it is possible to escape the rat race.

It doesn’t feel like an effort, it doesn’t feel forced, it doesn’t even feel like another thing I should make myself do.  It feels natural and welcome.  By sheer observation and trying not to contrive something else to add to my routine as a goal or a task, it is possible to just use awareness of your surrounding as a means to heal.  The colors, the sights, the scents, the patterns, the vibrancy, the sounds, the tastes, are all facets to appreciate in any situation.

All it takes is the recognition to pause, to find what is unique in every moment that can contribute toward healing and remind myself, “I am healing.  I am healing.  I am healing.”healing spaces

A Leukemia and MDS Cancer Story

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Harold is a Leukemia and MDS cancer survivor who used MyLifeLine.org during his journey. Today he writes a guest blog post for us and shares his leukemia and MDS cancer story.

“I felt knocked back on my heels,” Harold recalled. “I knew something was wrong.” He was right. After a visit to his doctor and a bone marrow biopsy, Harold Sneed was diagnosed with leukemia. He and his wife of 27 years, Debbie, were shocked.

Four years earlier at the age of 59, Harold was diagnosed with myelodysplastic syndrome (MDS) and said he always knew leukemia was a real possibility, but he was still stunned and shaken at his new diagnosis. He immediately underwent intense, high doses of chemotherapy, followed by a bone marrow stem cell transplant. During his treatment, a social worker at his cancer center recommended MyLifeLine.org to Harold and Debbie to keep their friends and family up-to-date on his treatment, inevitable setbacks and continued progress.
“We had so many people who wanted to know about what was going on,” said Harold. “It was so nice to be able to update everyone at once.”

Harold and Debbie recalled the plethora of support they received from family, friends and their community.

“We’ve had people reaching out to us every day through MyLifeLine.org,” he said. “It just amazed me. Even though they don’t always comment, you know they’re following. In addition, when you talk to them, they know your whole story and you don’t have to spend time updating them on everything.”

Since the Sneeds live in Kentucky and travelled to Tennessee for treatment, Harold recalled often feeling isolated after being away from home for long periods of time. “MyLifeLine.org was incredible. I was able to hear from people I haven’t heard from in a long time, whole churches were praying for us, people that lived far away; it really boosted my spirits. I was amazed at what I was able to do with all the support I had.”

After a year of enduring lengthy treatment, unpleasant side effects and exhaustive procedures, Harold’s leukemia went into remission. He continues to fight MDS, but is optimistic and recently celebrated a healthy 30-day check-up at his cancer center in Nashville. Harold said he’s learning to adjust to his new normal, works to keep a positive attitude and thanks “my wonderful wife for being with me all the way.”