“Finding Your Cause”- BOYAA member, Geoff Gamble, published in the Daily Record

 

Geoffrey M. Gamble: Finding your cause

I was finishing my first year as an associate at Saul Ewing LLP when my mother was diagnosed with breast cancer. In an instant, the excitement and self-assurance I had been feeling after finishing law school and starting my career was replaced by a feeling of helplessness that I had never experienced before.

Thankfully, my mother made a full recovery and has been cancer-free for over seven years. But after being so close to her fight, I knew I could not return to my life and just forget about cancer. Her recovery marked the beginning of my own journey into volunteerism.

Over the next few years, I looked for opportunities to get involved in the fight against cancer. I did more than a few walks to raise money for cancer research, but it did not feel like I was doing enough.  Ultimately, it was a colleague and close friend who introduced me to the group that would transform my life in so many ways. For the last five years, I have been a member of the Board of Young Adult Advisors, or BOYAA, a volunteer philanthropy organization run by The Ulman Cancer Fund for Young Adults I have participated in outreach and awareness efforts, as well as fundraising for scholarships to send cancer survivors and caregivers to college. Through my involvement with BOYAA, I have met the most incredible people from varied backgrounds – all drawn together by their shared motivation to support young adults and their loved ones impacted by cancer, and fight for a cure.

The impact BOYAA has had on my life cannot be understated. It has educated me about the unique and significant struggles and issues that young adult cancer patients experience and provided what is often much needed perspective. It has given me the opportunity to work alongside talented and young professionals in Baltimore who regularly challenge me to be better and to give more. It has allowed me to witness – in my fellow BOYAA members and the UCF staff – the inspiring work of people who go the extra mile day to improve the community and the lives of the people in it.  Perhaps most importantly, however, the group enables me to make a tangible impact in the lives of people struggling through the same ordeal as my mother.

Why volunteer?

Many of us get so trapped in our own corporate bubble that we fail to see the many opportunities to enrich our lives and the lives of others outside of the nine-to-five. Volunteering lets you work toward a greater good, while gaining an invaluable perspective on the world beyond your comfort zone. It is also a way to branch out and extend your professional development in an engaging, and often inspiring, way. Volunteering benefits the community, but it also benefits you.

When you take up the mantle of a cause, you expand your personal narrative. Your work should not be your entire life and, with a volunteer position, you can extend your resume by leaps and bounds.  You are not just an architect; you are an architect with an interest in neighborhood revitalization.

Volunteering also extends your network to include a hugely diverse group of motivated individuals. Think about the people who volunteer – they have a strong work ethic, leadership skills and are well connected. These are the people you want to know, and a shared commitment to a common cause is a great way to meet them. Contacts made through volunteering might end up enriching your professional life as well as your personal life.

How to find your cause

Do a quick Google search of a cause you care about and add the word “Baltimore.” You will no doubt get hundreds of results. In fact, there may be so many that it could be hard to narrow them down. When you are browsing, try to limit yourself to those organizations you can see yourself devoting your valuable free time. When you truly click with an organization on a personal level, it becomes easy to follow through.

Once you have narrowed your prospects, take a deeper look at the organization’s leadership. Do you have other interests that align outside of the cause itself? If so, ask one of the organization’s leaders out for coffee – people love talking about what motivates them, and they will be glad you are excited about their cause. If a one-on-one is not for you, then just show up at an event. Bring a friend if it makes you more comfortable. The important thing is to get your foot in the door so that you can judge whether the organization is the right fit for you.

It is an old cliché that those who volunteer often get more out of the experience than those they are there to help. But volunteering is the quintessential win-win. Find your cause and you truly will be enriched by doing so.

Geoffrey M. Gamble is a partner at Saul Ewing LLP in Baltimore. He can be reached at ggamble@saul.com.

National Social Workers Month! An Interview with: Elizabeth Saylor, MSW & Majbritt Jensen, LCSW-C

An Interview with:

 

Elizabeth Saylor, MSW

Elizabeth Saylor, MSW, is the Ulman Fund Young Adult Patient Navigator at University of Maryland Greenebaum Cancer Center (UMGCC).

 

Majbritt Jensen, LCSW-C

Majbritt Jensen LCSW-C is the Clinical Social Worker for the Blood and Marrow Transplant Program at the University of Maryland Greenebaum Cancer Center (UMGCC).
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Elizabeth (Class of 2002) and Majbritt (Class of 2000) are pictured here in front of their alma mater, the University of Maryland School of Social Work.

 

Why did you want to become a social worker (and work with young adults impacted by cancer)?

 

Majbritt: I love to be of service and to help. Hearing the story of a person’s life and witnessing the love shared between patients and their families enriches me daily. Oncology social work is a privilege. Oncology social workers are with people when their entire world changes the second the doctor says, “You have cancer.” Being part of that journey is an honor. To help ease the burden of having a diagnosis in any small way is a blessing and as a social worker I can help do that. I love connecting patients to resources like the Ulman Fund, or LLS, having  food sent to a patient’s home to help ease the stress on the caregiver, providing support groups and my favorite part is just being present and being a source of support during such a difficult time.

 

Elizabeth: Prior to social work I studied psychology.  These academic disciplines are closely related but social work puts a real emphasis on working from people’s strengths, thinking about how an individual’s environment shapes their behavior, and that ultimately, human beings know what is best for their own growth and healing.  At the time I was applying to graduate school I was a special educator in the Baltimore City Public School System.  I saw how simply diagnosing and labeling kids didn’t achieve much change and really cheated children out of a chance to thrive.  I also witnessed the potential for success in helping communities act on the school, neighborhood and municipal systems in which they lived.  The social justice aspect of social work really appeals to me. The social workers who served on  the Special Education team encouraged me to apply to UMB, and I am so glad I did!

Growing up I knew  two social workers because I was their patient during my own cancer experience.  The first was marginal in her efforts to establish rapport with me and my parents, and offered few helpful resources or suggestions.  This was unfortunate given the fact that she was stationed at a children’s hospital and could have made a huge difference in the lives of sick children, and one terrified and stressed-out 3rd grader.  The second was fantastic.  She was stationed at a large academic medical center where I received radiation. Working in an institution that was not at all geared towards children she sought creative and unique ways to make my experience easier.  She would play card and board games with me during the long wait times (imagine a waiting area filled with elderly, very ill cancer patients in wheel chairs and on stretchers) and strategized ways to ease my anxiety about being alone in the treatment room.  I am dating myself a bit here but she knew I loved Michael Jackson and so she secured a Walkman and a Thriller cassette tape that I could listen to.

 

What is the best part of your job as a social worker in the young adult oncology space?

 

Majbritt: The best part of my job as an oncology social worker is that I am reminded every day that things don’t matter, status doesn’t matter, all that matters is relationships and how much you have loved. Last year Elizabeth and I worked with a young man who passed away at age 24. He had a toddler, beautiful wife and devoted parents that stood by him through his long battle. Elizabeth and I went to his funeral service. Hundreds of people were there. In his short life that young man touched every person he met. When people stood up to talk about him, they talked about his kindness, and how much he loved his wife and son. At such a young age that young man left a mark on this world.

 

Elizabeth: Working with young adults who are living with cancer I witness daily the strength of the human spirit.  I mean this in the most genuine way.  I had cancer as a child.  It was not fun and I am sure dreadful for my parents.  But I didn’t have the responsibility the patients I work with have.  I had no choice – someone always made sure I got to the hospital.

People are remarkable and young adults especially.  Dealing with cancer at any age is challenging but managing to get out of bed and show up for chemotherapy when you are trying to finish school, or start a new job, or get used to living with your parents again because you are too sick to live alone, or figure out how to comfort your young children who are scared you are going to die, or explain to a new partner why you need to cancel a date, or figure out how to pay your car bill with your limited disability check, now that takes real guts. Doing all of this while your friends are moving forward with the “normal” young adults stuff is just plain courageous.

 

What piece of advice would you give anyone interested in become a social worker?

 

Majbritt: Always be present. You will have 100 things you will need to be doing but when you are with a patient or their loved one, be present. Listen. Be with them in that moment.

 

Elizabeth: Social work is a wonderful profession and the MSW is a versatile, practical advanced degree.  If you enjoy interacting with and learning from other human beings this could be the right career path for you.  And I don’t just mean learning from the patients.  I learn from colleagues like Majbritt every day. Her training is much more clinically focused while I am more of a macro practitioner. Majbritt knows how to rapidly but sincerely build trust with families that are about to go through transplant and this is a real skill.  

 

If you believe that the world- your country, city, neighborhood, block, or HOSPITAL! -can be a much better place, especially for those of us with the least resources, then I encourage you to pursue a career in social work.

National Social Workers Month! An Interview with: Alexandra Gubin, LCSW

An Interview with:

Alexandra Gubin, LCSW

Alexandra Gubin, LCSW, is the Ulman Fund Young Adult Patient Navigator at the Johns Hopkins Hospital Sidney Kimmel Comprehensive Cancer Center.

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Why did you want to become a social worker (and work with young adults impacted by cancer)?

I’ve always been interested in human behavior as well as concerned with the greater social good. When considering a career in Social Work, the range of professional pursuits provided by a Social Work degree, from direct practice to policy level work intrigued me very much.

 

What is the best part of your job as a social worker in the young adult oncology space?

The most rewarding aspect of my job is having the opportunity to interact and support patients and families navigating cancer treatment. The strength and resilience exuded by patients/families during critical and often traumatic points in their lives is life-affirming to me.

 

What piece of advice would you give anyone interested in become a social worker?

For those contemplating becoming a social worker, it is important to consider an openness to change and to the possibility of new experiences. A Social Work degree can take you many places!

 

National Social Workers Month! An Interview with: Meghan Fitzgibbons, MSW, LGSW

March is National Social Workers Month!

 

Social workers help people identify, problem solve, and cope with challenges that they may face in their everyday lives. Typically, social workers help identify people and communities in need of assistance, assess needs and challenges of their clients, help clients adjust to life challenges (such as a cancer diagnosis or a family crisis), research and refer to specific resources to improve their client’s well-being, and serve as advocate for their clients and their needs. Clinically licensed social workers also provide psychotherapy services, and diagnose and treat mental, behavioral, and emotional issues. Social can be employed in a variety of settings such as hospitals, schools, human service agencies, and private practices.

 

At the Ulman Cancer Fund for Young Adults, three of our Young Adult Patient Navigators have a social work background – Meghan Fitzgibbons, Alexandra Gubin, and Elizabeth Saylor. Our Young Adult Patient Navigators also work closely with other social workers within the hospital and community to support the young adult cancer population.

 

In honor of National Social Workers Month, we will be posting some interviews with our very own Patient Navigators as well as partner social workers at institutions about why they chose social work, what they love most, and advice for others pursuing a social work career.

 

The Ulman Cancer Fund for Young Adults wants to extend a sincere THANK YOU and THUMBS UP to all the social workers out there…especially those who work tirelessly to serve young adults impacted by cancer.

 

An Interview with:

 

Meghan Fitzgibbons MSW, LGSW

Meghan Fitzgibbons, MSW, LGSW is the Ulman Fund Young Adult Patient Navigator at Walter Reed National Military Medical Center’s John P. Murtha Cancer Center.  

 

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Why did you want to become a social worker (and work with young adults impacted by cancer)?

Having interned and then worked at the Department of Social Services in Charlottesville, VA and then having a social worker mentor and co-worker at Massachusetts General Hospital, becoming a social worker was sort of always on the table.  When I saw how versatile the role could be and how many different environments social workers could thrive in (particularly the hospital setting), I was sold.  I think that it’s nearly impossible to find anyone who hasn’t been touched by cancer these days – whether personally, or via a family member, friend, co-worker, etc.  When I started to learn about the unique challenges facing young adults with cancer, I was quickly drawn to this group of people and wanted to help improve their experiences.

 

What is the best part of your job as a social worker in the young adult oncology space?

 

It’s such an honor to be with people from the first day or week of diagnosis to their last day of treatment, or their last day on earth.  My favorite part of this job is the reward and privilege of witnessing and supporting patients and families during some of their toughest times, where they can’t even see it sometimes, but there is so much grace, faith, hope and humility all around me.

 

What piece of advice would you give anyone interested in become a social worker? 

 

Do it!  Social work has the potential to be one of the most rewarding careers.  Try to figure out the population and environment that are right for you because there is definitely something for everyone. 

 

My Stanford Prison Experiment While Waiting in Line for ‘Star Wars’

The scene reminded me of the 1971 experiment on authority which suggested why Nazis conformed, only instead of cells with prisoners there was an IMAX movie theater full of Star Wars nerds.

My numbered wristband revealed when I could enter the IMAX theater at the National Air and Space Museum the night Star Wars: The Force Awakens opened. I would be the 362nd nerd in the theater because I arrived only 90 minutes before the showing instead of 630 minutes like the luckiest nerd, Number 1.

Screw this. I cut through the pack, weaving between ropes, to stand with my friend Griffin who had arrived 150 minutes early.

“Do not cut in line or stand out of order!” a uniformed man who was standing outside the roped area screamed to the moviegoers. “You will enter the theater single-file! We will check your wristband! If you are out of order we will remove you! There will be no saving seats!”

Nerds began chattering, asking other nerds “What number are you?” to ensure they lined properly. When nerds asked about my number, I said, “I’m just standing with my friend,” and pocketed my right hand.

“Good luck, I hope you make it,” nerds said patting me on the back.

The line began moving and solemn nerds shuffled towards the leader, the man checking wristbands, in front of the theater. I quickly considered what to say to that man justifying my disorder in as few words as possible. My confidence grew, remembering that I was young and strong and I teach classes on how to write in plain language for my profession.

“This is wrong,” Griffin said. “Let me handle this.”

I looked at my livid friend, Number 158, who always supports social justice and is never afraid to speak up. “Ok. Thanks for sticking up for me,” I said.

Terror overtook me when just eight nerds stood between us and Wristband Checker. “150,” he yelled and I searched for a hidden tunnel under my feet, a ram to sacrifice, or anything else to help me escape.

The line shortened even more and I could see three nerds standing outside the roped area next to a burly security guard. They were caught. Before I could turn back, Wristband Checker yelled “158.”

Griffin, animated and high-pitched, started in rapid fire. “My friend goes in with me he had cancer twice and couldn’t stand in line with me that long his hip bone was removed due to childhood cancer!”

Wristband Checker, who didn’t look in our eyes and saw us only as numbers, grabbed my arm and said, “362. . . to the side! You can’t enter yet. Wait until you are called.”

“But he wouldn’t have been able to stand with me for two and a half hours!” Griffin fought back.

“I can’t let him in.”

“I’m sorry, I tried!” Number 158 said to me, walking away.

I drooped and watched as hundreds of other nerds entered, taking the best seats. The security guard looked down at the two-inch lift in the sole of my left shoe, which I need to walk after cancer left that leg shorter. He said in a voice softer than I had expected, “You should have taken the disabled entrance. There’s a special entrance upstairs for you people. I wish you took the disabled entrance.”

A young woman joined us segregated nerds. “That’s my fiancé!” she said, looking towards a young man walking away and miming something like, “I’ll come for you later, I promise.”

She was Number 410 and he was Number 279. “You are going to split up an engaged couple?” she said almost in tears.

“You were out of line,” Wristband Checker said, his focus already having moved on to Number 280’s wristband.

“Nothing he can do. He has to follow orders,” the guard told her.

“Get those people back!” Wristband Checker instructed the guard, pointing to us. “They’re too close to the ropes.”

We retreated from the ropes and from the security guard who had a gun, or maybe a light saber? I suddenly forgot where and who I was.

Twice the guard asked me, “Who are you again?”

It was easy for him to forget amid the chaos we marching nerds caused. “I’m Number 362,” I said.

“I told you you should’ve taken the disabled entrance,” he said again.

After Number 361 entered, the guard stopped Wristband Checker. “I got Number 362 here!” he said, sweeping me into the dark theater as if it were a hidden cellar.

That man saw my humanity and I won’t forget him.

I followed the other nerds down the hallway and up stairs towards empty seats when I spotted Griffin in the middle of the fourth row, a great location that allowed the 85-foot-wide screen to occupy her entire visual field. “Hey!” I said.

“Hey you made it, thank God! I even saved a seat for you.”

I didn’t ask how she did it. I sat beside Griffin and eyed my right wrist. For years hospital wristbands branded me a “cancer patient,” and now I was branded a “lesser nerd.” Rage began bubbling.

Then I beat the authoritarian Wristband Checker by forgetting he exists when the screen illuminated my life for two and a half hours with bastard children and cute robots. I felt for the end of the wristband inside the loop and pinched it with my thumb and the knuckle of my forefinger. In one yank I ripped it apart and thought, as I did after finishing treatment for both my first and second cancers, never again . . . never again.

Author: Benjamin Rubenstein
This originally published on The Huffington Post. Benjamin Rubenstein is the author of the Cancer-Slaying Super Man books.
By |January 6th, 2016|Uncategorized|0 Comments

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

Adolescent and Young Adult Cancer Awareness Week: Part 3 of a Three-Part Conversation with Survivors

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The first week of April is Adolescent & Young Adult Cancer Awareness Week – which is a big deal around here! To commemorate, we have interviewed several members of our community. Each has been affected by this illness and faced that diagnosis with grace. Below is a compilation of their answers, which paints a broad picture of what young adults facing cancer experience. This is part three of a three part series.  

“I thought, ‘What a great way to give back to the running community, meet some cool people, and find some more purpose in my running.’ Little did I know how much CT5K and UCF would change my life.”

Everyone’s cancer journey takes twists and turns. Sometimes the road is smooth, other times it is full of bumps and potholes. We are very proud to say that no matter where a survivor is on their journey we are able to give them the support they need.

Q: How did you get involved with the Ulman Cancer Fund for Young Adults (UCF)?

James Berry: I actually found out about the Ulman Cancer Fund for Young Adults through an ad on Facebook for their 4K for Cancer Run, and after looking into it for a few minutes I decided to make a spur of the moment decision and signed up before really talking to anyone about it.

Jennifer McRobbie: I started out as a Sherpa for Cancer to 5K (Ct5K) in 2009.  I was getting back into running, but looking for some more meaning to keep me going.  A friend, who knew Ct5K founder Holly Shoemaker, told me about the program.  I thought, “What a great way to give back to the running community, meet some cool people, and find some more purpose in my running.”  Little did I know how much CT5K and UCF would change my life.

Kelsey Barbour: I actually just happened to stumble upon the UCF. A banner ad on the side of my Facebook popped up, advertising the 4K for Cancer program. I clicked on it, perused the website for a bit and after reading more about 4K for Cancer, I knew I had to get involved.

Jason Greenspan: I found out about the UCF through Ct5K. I was with my stepdad one day at a community center and stumbled across the last brochure they had for Ct5K. I kind of thought it was fate because I’ve always wanted to run a 5K. So I looked it up to get more information and signed up for it. I am very happy to say that I’m currently the fastest Ct5K participant to date.

Melinda Hood: I got involved by doing a 5K / 1 mile run/walk that they hosted at Stupid Cancer’s national conference. Laura told me they were launching a Ct5K program in New York City so I signed up!  It was a great experience and I can’t wait to participate again!

Sonja Wagner

Sonja Wagner, 2015 4K Participant & Survivor.

Melinda Hood

Melinda Hood, Cancer to 5K participant

“My cancer diagnosis was originally just my own problem. It was personal and my only goal was to keep going. Now that my struggle is done, UCF has given me the ability to share my story and give inspiration to someone else that could be going through the same situation as me.”

Q: Did your experience with UCF open up new venues of support that weren’t available to you before?

Christa Bennett: Absolutely! My patient navigator, Allison Issacson, helped me get involved with…Cancer To 5K, the Jacquline Shearer Gala, support groups and new friendships with other survivors. I’ve had an amazing experience with the Ulman Cancer Fund and I’m forever grateful!

Gino DeFilippo: My cancer diagnosis was originally just my own problem. It was personal and my only goal was to keep going. Now that my struggle is done, UCF has given me the ability to share my story and give inspiration to someone else that could be going through the same situation as me. Another teenager who has to miss school can now talk to me about what to do and have some reassurance that graduation is still possible and that you can make new friends after this horrible journey.

Sonja Wagner: Even though I haven’t started the 4K ride yet, I still feel like I have received so much support. Most of the other participants are friends/family or caregivers of a cancer survivor so everyone is so kind and understanding. I actually had to have surgery last week to remove a cancer mass from my lung just 11 weeks before starting our ride. I was so nervous and was really stressed out about not being prepared physically for the ride after learning that the surgery would set me back a few weeks. However, with the support of my team, I have made the decision to continue my plan to ride this summer and don’t have a doubt in my mind that they are all cheering me on!

Olivia Marquart: The staff at the Ulman Cancer Fund has provided me with a group of people that are constantly supporting me. They have offered several different opportunities to connect with other people who are passionate about the young adult cancer movement. They have helped me to get involved with the Key to Keys experience this April. They were the first group I met that focused on supporting young adult cancer patients. Any other organization I went to I felt out of place because I was too old for pediatrics and too young to be in the adult side.

Shannon Shepard: The UCF has made me be a more outspoken person. When I was first diagnosed, there was not a support group for young adults with cancer. It was tough to tell my story and how I felt about things. When I found out that we had a patient navigator and she told me she was getting a group together, I thought that was a great idea. Now, I know there are others like me that are having a hard time just like me.

Brianne Kennedy-Brooks: Cancer to 5K was, and is, an integral part of my cancer journey and I am so incredibly grateful for the opportunity to reclaim my body and for the amazing volunteers who believed in me and pushed me to get back out there. I, honestly, could talk for hours about how amazing I think this program is. CT5K helped me to safely return to the world of running and to start feeling like my body was my own again. THANK YOU for everything you do to support this amazing program.

 

This is part three of a three part series. You can read the previous installments here and here. To be part of the conversation stay connected with us on facebook or twitter. Cancer Changes Lives…So Do We!