I Hope They Allow Crutches in Hell

Crutching is a great way to help injuries heal and bypass the lines at Disney World, and able-bodied individuals may treat crutchers with kindness. If you use crutches and think people are nice to you only because they consider you weak, and you must prove your strength until your death by always taking the challenging path through life, then follow these steps.

On the Washington, D.C., Metro, people will ask, “Do you want my seat?” Don’t let them snatch your completely irrational pride. You need to stand on one leg while holding crutches with one hand and the pole with the other as the train jerks and halts. There are several ways to respond to this offer:

The polite way: “No, thanks.”

The jerk way: “I’M NOT TAKING YOUR SEAT!”

The 16-year-old boy way: “I only sit for lap dances.”

When you reach the sidewalk you must speed-crutch so people think you’re crazy and intimidating instead of weak. Your loud crutch tips and long, quick, repetitive strides will make you sound like a galloping horse. You will quickly pass pedestrians walking in the same direction, though they will hear your approach for hundreds of steps. Here, you should politely say, “ON YOUR LEFT!” when you are 50 feet behind them, as a warning. For individuals who are hard of hearing, you should scream directly into their left ears when you are next to them. Since you won’t know who is and isn’t impaired, do both every time.

When you speed-crutch toward a pedestrian walking in the opposite direction as you, you will approach her as if you are LeBron James and she is Mary-Kate Olsen guarding you one-on-one with seven seconds left in game 7 of the NBA Finals. If nobody alters course then your momentum may kill the pedestrian. There are several ways you can prevent a catastrophe:

The polite way: Move.

The jerk way: Move and then stare her down. As you intersect, stop, pivot, and crutch backwards so you can continue glaring.

The 16-year-old boy way: Move and then politely say, “I LIKE YOUR TITS!”

When you flirt with a woman at the bar, she will wonder why you use crutches but she won’t ask outright. Explain your crutches immediately or else she will think you’re weak and from the bottom of the gene pool. You should lie. Say you suffered a broken tibia while successfully defending a stray Goldendoodle from a pack of coyotes while you were headed to defend your thesis for your doctorate in quantum physics. Drunks believe anything.

When coworkers ask why you take the stairs instead of the elevator, you should lie because that will be more acceptable than what you really think—that you are grateful for the physical abilities you have; that having to use crutches actually makes you stronger than everyone else.

Or, you can respond the 16-year-old boy way: “I don’t take elevators because I’ll lose mobile service . . . SNAPCHAT!”

 

BR

Benjamin Rubenstein writes and speaks about health and faking adulthood. Connect with him on Twitter and Facebook. You can also follow his writing on cancerslayerblog.

Iron Girl Columbia Triathlon to Host First Disabled Woman Triathlete

On Sunday, August 16, 2015 approximately 1800 women, ranging in age from 13 to 80, will participate in the 10th Annual Iron Girl Columbia Triathlon. Among those women will be Columbia, Maryland’s very own Defu Fekadu, the first disabled woman triathlete to participate in this race.

A Columbia, Maryland staple and an introductory triathlon for many women in the area, the Iron Girl Columbia Triathlon is an inspiring women’s event on many levels, but getting a glimpse of Defu and her team at this year’s race is sure to be the most inspiring sight to see. Defu will be supported by a team of women from Athletes Serving Athletes, a non-profit organization that empowers athletes living with disabilities to train and compete in mainstream running and triathlon events. Athletes Serving Athletes (ASA) provides the assistance of able-bodied volunteers termed “Wingmen” and Defu will not only be the first disabled woman to participate in this event, but ASA will also provide for the first time, a complete team of women “Wingmen” to support her along the way.

The team consists of swimmer, Aleah Zinalabedini; biker, Melinda Peters and runner, Kerry Blackmer who will all work together with the help of their team leader, Jennifer Roussillon to assist Defu across the Iron Girl finish line. When asked about Defu and the experience so far, the ASA Wingmen each have an empowering and inspiring story of their own to share.

“Defu told me that ASA has given her a voice,” said Melinda Peters, biker wingman. “I think she is brave, not only for competing in this race but for constantly motivating and teaching others that they too can do anything they put their mind to.”

“I’m truly honored that Defu and ASA are giving me the opportunity to swim with her in this year’s Iron Girl,” said Aleah Zinalabedini, swimmer wingman. “I am consistently inspired by her beautiful smile, incredible outlook on life and ability to work through her fears with grace.”

“I’ll never forget the first time I met Defu,” said Kerry Blackmer, runner wingman. “I’m not sure that I realized then the profound impact Athletes Serving Athletes and Defu would have on my life.”

It is easy to get caught up in medals, times, awards and personal records in a race like the Iron Girl Columbia Triathlon. Team Defu stands as a reminder that this race means so much more than that. This race, and anything like it that is a true test of physical strength and mental endurance, is about empowerment and finding the courage to do something that might seem impossible.

“Just like any athlete, Defu, has been training for Iron Girl. She has gone outside of her comfort zone and continues to push forward,” said Jennifer Roussillon, team leader. “Simply put, Defu is the epitome of what it means to be an Iron Girl, and I am honored and humbled to be on this journey with her.”

The 10 Year Anniversary of the Iron Girl Columbia Triathlon will take place on Sunday, August 16, 2015 in and around Centennial Park in Columbia, Maryland. The race will start with the swim portion at approximately 6:50 a.m. and continue through the late morning. For more details on the event and to view results after the event, visit www.ulmanfund.org/ucfraces/ .
About the Ulman Cancer Fund for Young Adults & UCF Races

The Ulman Cancer Fund for Young Adults (ulmanfund.org) is a non-profit, 501(c)(3) organization that changes lives by creating a community of support for young adults and their loved ones impacted by cancer. Founded in 1997, the Ulman Cancer Fund for Young Adults works at both the local and national level to ensure that all young adults impacted by cancer have a voice and the necessary resources to thrive.
UCF Races was established in 2010 to further the mission of the Ulman Cancer Fund for Young Adults. UCF Races produces first class endurance events that enrich the community, celebrate the achievements of every participant and ultimately spread awareness of the young adult cancer fight.

 

About Athletes Serving Athletes

Athletes Serving Athletes (ASA) is a non-profit organization located in Maryland that empowers athletes living with disabilities to train and compete in mainstream running and triathlon events. Most ASA athletes have very limited to no mobility and compete with the assistance of able-bodied volunteers termed “Wingmen” (men and women, young and old, fast and slow). ASA offers innovative athletic training, supportive mentor relationships, and high quality endurance events for athletes living with disabilities – all of which are free of charge to the individuals and families served. To support or learn more about ASA please visit: www.athletesservingathletes.org

Prom and Chemo: Embracing a New Normal

On New Year’s Eve 2014, we were welcoming the New Year at a mountain cabin in Vermont. Henry, his brother Luke, and our good friend John had spent the last day of the year on the slopes at Killington. After dinner and a make-shift dance party, we were collapsed around the living room talking about our resolutions and what lay ahead in 2015. Our friends who owned the cabin were moving back to the U.S. from Dubai. Luke would finish his first year of college in May. Henry was working out with a new coach to improve his tennis game for the spring season at his high school, and he was already looking forward to his summer trip to Africa.

Now, halfway through 2015, our friends have settled in Chicago. Luke has finished his first year of college. Henry, however, was admitted to Children’s National Medical Center on January 15th and has spent most of his nights in the hospital. At 16, Henry was diagnosed with an aggressive form of Leukemia. He would go through three rounds of chemo and was admitted for bone marrow transplant (BMT) on April 19th. Due to complications, Henry remains on the BMT unit today. This is not the year Henry, or any of us, imagined.

When daily decisions affect the life of your child, it is easy to get so focused on the big picture that everything else fades away in importance. When Henry would question how he would handle his school work, I told him not to worry at all about that, “it just wasn’t that important.” When Henry would comment on his changing looks as his hair fell out and his lean body inflated with steroids, I would brush it aside assuring him he was perfect. I thought minimizing his concerns would help alleviate any anxiety. I was wrong.   As a teenager, his life was all about school, friends and tennis. In trying to minimize the impact Henry’s diagnosis and hospitalization had on Henry’s life, I was actually downgrading the very activities that made Henry’s life full; that made his life “normal.”

It has been over six months since Henry was diagnosed, and we have all learned so much about Leukemia, bone marrow transplant, and most importantly about ourselves. I cannot shield Henry from the negative impact that cancer has had and will continue to have on his life. We are learning to acknowledge the losses, grieve, and then find a way to move on. Cancer took away 11th grade, his tennis season, time with his girlfriend and friends at home, and his volunteer trip to Uganda. These are the pieces that made Henry’s life full. His life does not resemble the 2015 imagined on New Year’s Eve, but cancer has positive effects as well.

Once your life is affected by cancer, it is impossible to take anything for granted. Every day is a gift. Sharing a smile, conversation, or even a tear with a friend is special. The norms taken for granted become special moments. Henry may not be able to spend time with his friends at home, but he has made some lasting friendships with staff at the hospital. His nurses, doctors, and other patients make Henry’s world special. Allie, the Ulman Cancer Fund Patient Navigator at Children’s, stepped into Henry’s life the day after he was admitted, and she has held his hand, danced, laughed, listened and cried right along with Henry throughout his journey. Henry has not been able to pick up a book since January, but the outpouring of support from his high school counselor, teachers, and the CNMC Education Specialist, Rose, help him know he can do it and he will graduate with his high school class in June 2016. Henry cannot take his girlfriend on a date, but the time they have shared in the hospital has brought them closer. He told me one night that she made him feel handsome and loved. What a gift for a teenage boy!

These snippets of “normal,” time with his girlfriend or sharing a laugh with a friend, keep Henry going, help him stay strong. The Ulman Cancer Fund wanted Henry to experience that rite of passage, the Prom. Due to his compromised immune system, Henry could not be in a crowd, he could not eat a regular diet, and he would not have the energy for a night out. So, Ulman brought the Prom to Henry. On June 5th, 12 volunteers transformed a room in our house to a candlelit ballroom complete with dining room and dance floor. A tux, flowers (artificial, as he cannot be in contact with fresh plants), private chef and picture booth were sent in for the evening. Henry’s girlfriend arrived like a dream, as beautiful as ever. For that one night, Henry was just an 11th grader, dancing with his girlfriend at the Prom.

That night became all the more special when Henry was readmitted to the hospital two days later with complications from his transplant. He knows that any plans for summer will have to wait until next year and that his senior year will include many days in the hospital. Henry will continue to revel in the norm of teenage life. That “normal,” may not be what he expected as he looked ahead on new year’s eve, but it is a “normal,” Henry is learning to embrace.

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#FacingTheIssues – The Heartbreak of Hair Loss

When many people think about a cancer diagnosis, the first thing that may come to mind is hair loss. Not surprising since it can be the most visual cue that a person is undergoing cancer treatment.

While not everyone with cancer experiences hair loss, it is one of the most common side effects of certain cancer treatments. Hair loss occurs because many cancer treatments target both cancer cells and normal cells – including cells  that make hair grow.

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Julie Lanahan, UCF Program Coordinator for Outreach & Engagement and a breast cancer survivor, and her daughter, Maggie.

While hair loss is temporary, it can be an emotional transition. For adolescents and young adults, identity formation is a critical developmental task as is developing deep bonds with friends and intimate partners. Hair and other physical attributes compose important aspects of one’s identity. The loss of hair can impact one’s sense of self, identity and overall self-esteem.

As such, adolescents and young adults may react to hair loss by isolating themselves from others, especially peers. This sense of isolation can fuel feelings of emotional distress among adolescents and young adults. For those who are facing a new cancer diagnosis, here are some coping strategies to help deal with hair loss:

  • Allow yourself permission to adjust to the news of hair loss and
    associated emotions that might arise for you some of which might include despair, anxiety, sadness and anger.
  • When confronted what to do with regards to going for the natural bald-look or wearing a wig, hat or scarf, do what feels comfortable to you.
  • Take control and prepare for the process of hair loss as much as is possible (for example, shaving your head rather than waiting for hair to fall out over time may help combat feelings of loss or making sure that there is a hat or scarf that you might like to wear prior to losing all of your hair may help you feel a greater sense of preparedness).
  • Express your feelings associated with hair loss by communicating with friends, family or fellow cancer patients.
  • Some patients find that doing something with your hair, whether that be donating your hair to other cancer patients in need of wigs or by memorializing your hair in some way such as journaling about its significance to you, can be therapeutic.

Whole Foods Market Columbia to Sponsor 2015 Iron Girl Columbia Half Marathon

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UCF Races and the Ulman Cancer Fund for Young Adults are proud to announce a partnership with Whole Foods Market Columbia for the 2015 Iron Girl Columbia Half Marathon & Family 5K. With a focus on providing the community with natural and organic products and ways to lead a healthy lifestyle, Whole Foods Market Columbia will now serve as the presenting sponsor for the 13.1 mile women’s race and 5K family race to be held on September 12, 2015.

Known as one of the best women’s events in the Mid-Atlantic, the Iron Girl Columbia Half Marathon & Family 5K, enhances the participant race experience even more with this partnership with Whole Foods Market Columbia, offering participants complimentary and discounted food items, nutrition tips and access to other all natural products on race day and in the months leading up to the event.

The Iron Girl Columbia Half Marathon & Family 5K will start and finish at the Columbia Town Center, home to the 45,000 square foot Whole Foods Market which opened in late 2014. While on the 13.1 mile course route, participants will pass the store location twice and all participants and spectators will have the opportunity to take part in a post-race celebration at the square adjacent to the store.

“Whole Foods Market Columbia has been a partner of the Ulman Cancer Fund for Young Adults since it opened last year. In addition to being located on the race course, this partnership makes sense to us as we focus on the health and wellness of our community,” said Brian Satola, UCF Races Race Director. “We’re thrilled to have Whole Foods Market Columbia as the presenting sponsor, their presence and participation will not only enhance our event, but also strengthen our community in Howard County.”

“We are excited to continue this partnership and support the Ulman Cancer Fund for Young Adults,” said Svetlana Bautista, Store Team Leader. “Supporting our community is one of Whole Foods Market’s core values, and this is a great opportunity for us at Whole Foods Market Columbia to serve our neighbors and cheer for our community as they cross the finish line.”

Registration for the 2015 Iron Girl Columbia Half Marathon & Family 5K presented by Whole Foods Market Columbia is open online at www.ulmanfund.org/ucfraces through August 21, 2015. All proceeds from the race benefit the Ulman Cancer Fund for Young Adults.

About the Ulman Cancer Fund for Young Adults & UCF Races

The Ulman Cancer Fund for Young Adults (ulmanfund.org) is a non-profit, 501(c)(3) organization that changes lives by creating a community of support for young adults and their loved ones impacted by cancer. Founded in 1997, the Ulman Cancer Fund for Young Adults works at both the local and national level to ensure that all young adults impacted by cancer have a voice and the necessary resources to thrive.

UCF Races was established in 2010 to further the mission of the Ulman Cancer Fund for Young Adults. UCF Races produces first class endurance events that enrich the community, celebrate the achievements of every participant and ultimately spread awareness of the young adult cancer fight.

About Whole Foods Market® 

Founded in 1980 in Austin, Texas, Whole Foods Market (wholefoodsmarket.com, NASDAQ: WFM), is the leading natural and organic food retailer. As America’s first national certified organic grocer, Whole Foods Market was named “America’s Healthiest Grocery Store” byHealth magazine. The company’s motto, “Whole Foods, Whole People, Whole Planet”™ captures its mission to ensure customer satisfaction and health, Team Member excellence and happiness, enhanced shareholder value, community support and environmental improvement. Thanks to the company’s more than 78,000 Team Members, Whole Foods Market has been ranked as one of the “100 Best Companies to Work For” in America by FORTUNE magazine for 15 consecutive years. In fiscal year 2013, the company had sales of $12.9 billion and currently has more than 360 stores in the United States, Canada and the United Kingdom.

 

 

4K for Cancer Blog Highlights

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Our 4K runs and rides have begun for 2015. The participants in these great trips are writing their own blog posts about their travels. Here are some of the best blog posts from the various runs and rides.

SAN FRANCISCO TO BALTIMORE RUN

FIRST DAY! 1 OF 49: VACAVILLE, CA

Corryn Wheatley describes her first day on her trip from San Francisco to Baltimore. She talks about getting to know her teammates and the post includes a great picture with the Golden Gate Bridge as the backdrop.

SAN FRANCISCO TO NEW YORK RUN

DAY 1: FOR CHARLOTTE & FOR SANDY

Laura Grau reports on her first day from San Francisco in her post. She describes what and who was inspiring her to run and talks about the beautiful San Francisco scenery she and her group ran through.

BALTIMORE TO PORTLAND RIDE

DAY #1

Zachary Ross lets us know how his first day went. He provides a funny story about his friend and offers some stats on his trip so far. He also posted two pictures of his team on the road.

BALTIMORE TO SEATTLE RIDE

WEEK 2

Devon Callagy provides some highlights of her second week in her trip to Seattle. The post includes food donations, some great hosts and meeting Doug Ulman.

BALTIMORE TO SAN DIEGO RIDE

4K UPDATE (SAN DIEGO): HELLO WORLD!

Before beginning his trip, Dustin Query posted a poem he wrote about his trip titled “The 4K Endeavor”. It is very nicely written and something worth looking at.

BALTIMORE TO SAN FRANCISCO RIDE

THE SECOND STRETCH: CHARLOTTESVILLE, VA TO KNOXVILLE, TN

Jamie Burke tells us a range of short stories from his trip so far, ranging from staying at a church to meeting someone who knows his astronomy advisor.

You Are A BadA$$!

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#facingtheissues, by Ceili Leahy, an 18-year old Ewing’s Sarcoma with secondary AML survivor

“No cancer is easy, period. The reason I say this is not to freak you out, but because I think some people don’t give themselves enough credit for how incredibly badass they are.”

I’m sure you’ve heard this about a million times from your doctors, your psychologists, your parents, and pretty much anyone else who cares about your sanity, but do not google your cancer. And, more importantly, do not google your prognosis. I’m sure there’s this massive part of you that’s dying to take a peek, just a little browse through the infinite files available to you on the Internet, ranging from papers by the most knowledgeable sources out there to chat room speculations from people who have never even been through a high school biology class. And while there’s a lot of good information out there, it’s not what you need right now.

For those of you who know your prognosis already, whether you were told by your doctor, had a friend slip up and tell you, or (God forbid) you googled it, this part is for you.

Your prognosis was likely given you in the form of a percentage. Whether you’ve got a 99% chance or a 5% chance of kicking this cancer’s ass, you have cancer. So let yourself freak out a little (just a little.) It kills me when kids say, “Oh, I had X cancer, so compared to most cancers it was easy.” No cancer is easy, period. The reason I say this is not to freak you out, but because I think some people don’t give themselves enough credit for how incredibly badass they are.

Back to the numbers. You may have had this explained to you already, but your prognosis is based entirely off of statistics, AKA there’s not necessarily anything you have in common with the rest of the population being used other than that they have your cancer. And a statistic like that can only tell you so much. For example, it doesn’t tell you which of the participants skipped chemo treatments, which ones were treated at under-funded hospitals, which ones only ate Funyuns for a year, or which ones had to travel eight hours to get to their clinic. It tells you nothing about the individual, just the basest information about the group as a whole. The way I see it, even one hundredth of a single percent is infinite for you. Even that miniscule chance represents someone, so why not you?

“If I didn’t have my confidence or my will, what did I have?”

I’ll share a secret with you: I looked at my prognosis. Granted, I did last several months without looking, but I looked nonetheless. I had 15% chance of surviving, and if you would believe it, finding that out made me so damn proud. Because at that point, I’d already overcome some serious junk. I’d made it through weeks of esophageal mucositis, severe dehydration, the entire first stage of chemotherapy, and all 35 body-breaking sessions of radiation. And if I could survive that, I could get through anything. The thing is, I’m not sure I could have made it through all that if I had known what my chances were from day one. I mean, 15% is pretty bad; not the worst, but it’s no cupcake either. I’m not sure I would have been so confident in myself, and in my experience the mere will to survive is greater than any drug or treatment out there. If I didn’t have my confidence or my will, what did I have?

So if you’re reading this and have resisted the urge to check out your odds until now, please, please, please wait. There’s a right time, and a whole lot of wrong time, but when it’s right you’ll know. And whenever that time comes, go ahead. That number will probably be a point of pride for the rest of your life

“Many survival case histories show that stubborn, strong willpower can conquer many obstacles. One case history tells us of a man stranded in the desert for eight days without food or water; he had no survival training, and he did nothing right. But he wanted to survive, and through sheer willpower, he did survive. With training, equipment, and the will to survive, you will find you can overcome any obstacle you may face. You will survive.”

-Survival manual of the US Army

No Instruction Manual For YA Cancer

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#facingtheissues, Meg Fitzgibbions & Jenna Hearndon

Jenna is a 26 year-old caregiver to her 27 year-old active duty husband, Josh, who has grade II gliomatosis cerebri. This term rolls right off of Jenna’s tongue, as she’s been asked countless times about her husband’s diagnosis. In simpler terms, Josh has a cancerous tumor in his brain. Jenna started a blog shortly after Josh’s diagnosis, sharing “I have created this blog mainly to keep everyone updated on what is going on, but also as a therapy for myself. I am in a constant state of needing to express my thoughts and feelings.” Included below is a glimpse into the life Jenna and Josh are adjusting to together and Jenna’s points of view and realizations, as her husband’s caregiver.

“There is no guideline or instruction manual on how you are supposed to deal with this all.”

The therapist explained to me that I am going through the stages of grief. I am grieving the old life I had. I am grieving the life we had planned to have. I am grieving the pregnancy that we were supposed to be experiencing right now. In a matter of an hour she had put my entire life in perspective. I want it to be known that I, in no way shape or form, blame Josh. This disease is something that literally came out of nowhere and knocked us both on our asses. There is no guideline or instruction manual on how you are supposed to deal with this all. Each person grieves in their own way. For me, it’s bottling it all up until I completely crack.

For Josh, it’s humor. He makes light of situations and tries his hardest to be strong for the both of us. I know a lot of people constantly say, “oh you’re handling this so well” or “man, you guys are always so positive” but if they all knew the number of times during the day I break down and cry they would all be surprised. I’m not here for a pity party, I am just here to show that we are in fact human. I am merely indulging you all on a part of my life that I keep very personal. I sat on the fence for a while on reasoning how much is too much to share. I have come to the conclusion that I’ve already shared a lot. Everyone has read our process with freezing the sperm and fertility so that’s enough TMI already. Am I going to share every down moment in my life? No. Am I going to mention every time Josh and I have a fight? No. But I do think it needs to be known that we’re not living this Leave it to Beaver lifestyle. We fight. We argue. We cry. We laugh. We make up. And we go on with our lives.

This has by far been the most trying thing on not only us but our marriage as well. I take every day with great appreciation, for it is one more day that I have with my husband. I fight with him. I yell at him. I regret doing so more often than I used to, but I am only human. I try hard, really hard in fact to make sure his life is as easy as possible. That he doesn’t have to worry about the medications or the appointments. Yes, we spend a lot of time at the movie theater and yes, we have seen pretty much every movie currently out right now. But honestly, please, tell me where else can I take a cancer patient?! He enjoys them. I get a break for a few hours. It’s a win-win. So to all, let me remind you, there is no manual. There are no guidelines. We are literally flying by the seat of our pants and just praying we are doing it right. Do we mess up? Yes. I often worry about that, but we’re making the best out of a crappy situation and I’d say we’re doing pretty good.

If anyone, and I mean ANYONE is feeling depressed, overwhelmed, or just feeling the need to talk it out with someone, please don’t be afraid to ask for help. I wasn’t too proud to ask for it, I just assumed that I was doing okay and that I didn’t need it. Once I started talking, I literally had word vomit and I couldn’t stop. It’s so freeing to finally be able to tell someone something that you have kept bottled up inside. So please, don’t be afraid to ask for help when help is needed! 

As far as me, I am still a work in progress. I am changing around therapists now as I couldn’t stand the one I have. I do believe that sometimes it’s good to shop around for a therapist. You shouldn’t be afraid to do so. For me, it’s all about a comfort level. I have to click with you before I am able to tell you my deepest darkest secrets. I have had two in the past few months, both of which I didn’t click with. One focused too much on my marriage and making issues that weren’t there. And one focused too much on me emasculating my husband (YES, she said that). I am not looking for a miracle worker. I realize that their job is to help me sort through my problems. But the advice they were offering me was unrealistic for a wife taking care of her husband who has cancer. Her big advice was to go Target by myself. Yes, I am going to leave a seizure prone person in a room by himself so I can go get away for an hour?! Uh no. Her other advice was that my life revolves too much around his cancer. UH EXC– USE ME?! You don’t ever tell a mother that her life revolves too much around her child. You don’t ever tell a career woman that her life revolves too much around her career. But because my husband has cancer, and I am his main caregiver, it’s wrong that my life revolves too much around him? He is my life. He is my everything. So no, I don’t work. I don’t go out with friends. I don’t go shopping by myself. I can’t tell you guys the last time I got my hair cut. My nails are trashed and we won’t even go into shaving my legs. Yes, I have let myself go. Before anyone says it, yes I know I have to make time for myself. I have to put my needs in there too and I do. I am merely stating all of this to give everyone an idea. But spend a day in my life where I am constantly caring for another human being and you’ll see why. No, he’s not in a wheel chair and he doesn’t physically depend on me. But I try every day to make sure his days are easy and stress free. So what if my house isn’t clean, if the dishes aren’t done, and if I didn’t make it to Target by myself, well then that’s fine. Because I know my husband is happy, I am happy. And to me that is all that matters!

You can follow Jenna and Josh’s journey here!

Mother & Caregiver: Supportive, Anxious, Stressed and Loving

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by Christiane & Allison Isaccson, #facingtheissues

When someone is given a cancer diagnosis, it affects the whole family. Christiane, the mom of 16 year-old David, shares her experience of being the caregiver of a teen with cancer and how her family’s perspective has changed throughout their experience. 

This past year has been surreal. It began with my 15 year old son, David, being diagnosed with Osteosarcoma in his left fibula a week after his 15th birthday. At the time of my son’s diagnosis I knew nothing about bone cancer – but enough to be scared to death. I think it is fair to say that a parent’s worse nightmare is the fear of losing their child. David and I spent April through June in and out of the hospital for all of his chemo treatments. Late June he had his surgery which was followed by five more months of chemo. During the entire chemo treatment, I focused solely on David and keeping him as comfortable as I could. As he spent most of his time at the hospital sleeping, I would distract myself with work. I had to constantly push away the intense thoughts of fear that I might lose David, my beautiful son, who has always been such a loving child.

As you can imagine, I was beyond stressed out….The fear and anxiety that I had felt was just like before David was diagnosed, but this time it was back with a vengeance.

I think many people who have gone through some dramatic event in their life will tell you that they found out who their friends truly were in their time of need. The same happened to us. While my immediate family wasn’t there for me, I had friends from as far away as Hawaii who would let me know that we were not alone in this fight against cancer. The staff at Children’s National Medical Center became our family. Many of the nurses and Allie, our AYA Patient Navigator, were always happy to see us and made David feel special and cared for. They understood what he was going through and helped him deal not only with his physical pain, but also often with the emotional challenges that he faced in this fight. Over the course of the past ten months both of us had grown really close to several of the staff and I couldn’t even imagine no longer having them there as support.

Needless to say, the weekend of David’s last chemo treatment was bittersweet. We were very fortunate that most of our favorite nurses were working at some point during David’s last treatment. This allowed us to thank them as best as we could, as they are truly David’s Angels. In one way, it didn’t even really hit me that this was David’s last chemo treatment, even though my daughter flew in from college to help us celebrate, along with a few other friends. We went home and still it didn’t hit me. I was told to keep our bags packed and ready to go in case David developed a fever so I washed all of our things and packed the bags. I was still on high alert and constantly watching David to see if he was getting sick. Finally, about two weeks later, I started to realize that the constant hospital trips and stays might be behind us; but then I had to worry about the first set of scans that David was scheduled to have post-surgery and post chemo treatment. This would be the first set of scans since just before David had his surgery in June. As you can imagine, I was beyond stressed out. It didn’t help that the scans were done over the weekend, so I had to wait a day before getting the results back. The fear and anxiety that I had felt was just like before David was diagnosed, but this time it was back with a vengeance.

I finally received a phone call at 5 pm from both David’s pediatric oncologist and his pediatric oncologist fellow. The great news was that the scans all looked great, however his chest CT scan showed some really tiny spots that everyone believed was nothing; merely residual from a cold that David had a few months prior. Nevertheless, to be cautious, they wanted the scan repeated several weeks later before they would request for David’s port to be removed. I was relieved that the scans all looked great, but at the same time, disappointed that we would need to wait a few more weeks before the port could be removed. I had to remind myself that the most important thing was that David’s scans were fine, and waiting another few weeks to get the port removed didn’t matter at this point. It wasn’t causing him any pain or discomfort. A few days later I felt like a weight had been lifted from my shoulders and all of a sudden I was completely and utterly exhausted. I could have slept for a week or more. Unfortunately, that is a luxury that I didn’t have, as I had to keep moving and continue to help David adjust back into our new normal. I, too, had to adjust to being back in the office around co-workers who, despite all the best intentions, had no idea what the past year had been like.

Slowly but surely we are adjusting to a new norm. We are in life AFTER cancer…

So now, three months have passed and David just had another round of scans done. Once again, they all look great and I continue to thank God that David is doing so well.

Just like three months ago, I was absolutely stressed out when he had his scans done a week ago, but I have heard that this is quite normal. I am finally beginning to relax a little bit more, but always worry when David seems a bit more tired than usual. His hair is back and it is so soft to the touch. He has been back in school full-time for almost three months now and is even back to playing basketball. David still isn’t where he was a year ago, both physically and mentally, but he is getting there.

Slowly but surely we are adjusting to a new norm. We are in life AFTER cancer and yet, we often get pulled back into the struggles of this past year, most notably regarding school. I often wish that his teachers and friends had a better understanding of what David has been through and how he continues to strive to get normalcy back into his life. David has always been a very academic student and is often very frustrated that he can’t excel in school right now like he has done in the past. It is so frustrating for me that none of his teachers appear to acknowledge how well he is doing. I wish I could make David realize and embrace how truly amazing he is and how incredible it is that he is doing so well, yet he has set the bar even higher for himself. It just seems so unfair that after everything he has been through, he now has to fight academically.

We still drive down to Children’s hospital twice a week for physical therapy, and though I know my way around like the back of my hand, it is no longer my second home. Sometimes David and I will pop in on the 4th floor to see if any of our favorite nurses are working, and trust me when I tell you that there are a lot of them. I found that everyone, from the doctors all the way down to the cleaning staff, was always super friendly and caring towards us. They are priceless people. So when I am feeling a bit overwhelmed with life or scared, I continue to pray and find strength from the great and supportive community we have via David’s Caring Bridge website and beyond, knowing that David continues to get better each day.

Starting & Building Families After Transplant

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#facingtheissues, by Elizabeth Saylor

Many young adults will go through a bone marrow or stem cell transplant in as part of their cancer treatment. BMT/SCTs are intense medical processes that offer lives saving options for young adults but can greatly compromise fertility.

I have been privileged to serve many young adults before and after transplant. One couple, Phil and Jes Koubik are kind enough to share their thoughts on the journey to build their family and to welcome their son Nicholas into the world.

“…I would tell anyone going through cancer and facing many of the same decisions that things may not go exactly as you planned or thought that they would occur…but sometimes that’s when real blessings truly happen and you find out just how amazing life truly is.”

Being a young adult and going through cancer has been one of the most difficult experiences my wife or I have ever had to face. You [are forced to] deal with…fertility issues, from all the treatments including chemotherapy, radiation, and even getting a stem-cell transplant.

Now the doctors told us that I’d most likely be infertile from everything I went through and, while there’s a small chance that my fertility might return, I’ll likely be incapable of having biological children for the rest of my life. So a couple of years ago, I went through testing and found out that I am incapable of having my own biological children. Then towards the beginning of December 2013, my wife and I decided we wanted to explore options for having a child by other means as we did not want to wait hoping that my fertility might come back and then find out that we waited too long that my wife eventually lost her ability to have children. After talking about the various options, my wife and I decided that we would use donor sperm and IVF to fertilize my wife’s eggs. So we officially started our journey towards parenthood Christmas Eve 2013 by having our first appointment with the fertility center Shady Grove.

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We acquired our donor sample and proceeded through one round of IUI which did not work. We had one vial of our donor sample left and thus made the decision to go straight to IVF. Well it turned out to be the right decision as my wife got pregnant on the first try in April 2014. Finally, our dreams of becoming parents was finally coming to fruition. I must admit that since we used donor sperm, I did have some concerns about how I’d feel going through this. However, I must say that the concerns started to disappear fairly quickly and by the last few months of our pregnancy, every single concern I ever had completely disappeared and even felt strange to me as though those concerns were from another person entirely and not myself. This was going to be my son, biologically or not and nothing was going to change that. I’ve learned that family and especially parenthood isn’t just a matter of biological relationship but whether there’s love and the willingness to be there for the child and make every attempt to give them the best life possible. I’ve heard the quote about it taking more than biology to be a parent. It takes someone willing to be there day in and day out striving to give their child the best life possible. Knowing this, it never became more real then the day my son was born which was December 23, 2014. There are no words or expressions which can do accurate justice to the pride, happiness, and elation I felt that day my son was born. That day instantly became my favorite day and experience EVER making the day I married my wife fall into second place.

So while this journey has been a long and arduous one, it has been well worth the wait. While my son Nicholas shares no biological factors or similarities with myself, he is my son nonetheless. There is no one who can take that away from me and now I’m living the dream of being a parent. It may not have been in the way I always thought it’d happen growing up and certainly didn’t plan on cancer entering my life and making changes to how I thought my life would go. However, I wouldn’t change a thing as having gone through everything we’ve been through and struggling to achieve something many take for granted, has made my wife and I so incredibly thankful and appreciative for everything God has given us. We’ve realized the incredible gift that becoming parents to a child truly is and neither of us take our son nor our experiences for granted. So I think my wife and I would tell anyone going through cancer and facing many of the same decisions that things may not go exactly as you planned or thought that they would occur….. But sometimes that’s when real blessings truly happen and you find out just how amazing life truly is. Never give in and never give up!!!

Sincerely, 
Phil
By |April 10th, 2015|Inspiration|0 Comments