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!

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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!

Adolescent & Young Adult Cancer Awareness Week: Part 2 of a Three-Part Conversation with Survivors

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from left to right: Gino, Jennifer, Kelsey, Christina, Melinda

 

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 two of a three part series.  

“My friends and peers were super supportive of me during the time leading up to my surgery and during my year of treatment on interferon. They continued to invite me to everything and treat me like they always did.”

The types of reactions that cancer patients receive from the public vary. Some interactions can be uplifting. Others, while well intended, can be frustrating. The only thing that remains constant is that everyone, from family to people on the street, seem to want to weigh in on your diagnosis.

Q: What has been the most encouraging comment or response you received during treatment?

Christa Bennett: The most encouraging response was from a friend who said that I helped her get through her hard days when she would think of my strength. That was encouraging; it makes you feel like you have to keep fighting because people need you to be strong. I also had friends, nurses and strangers praying for me and just loving on me in my time of need.

Gino DeFeilippo: All my friends were very supportive of my diagnosis. A lot of them set up a fundraiser and stopped by the hospital to give me anything they thought would be helpful. I had a collection of maybe 5 different types of blankets at the end of my 5 month stay in the hospital.

Sonja Wagner: I consider myself really lucky to have a very supportive group of friends who have been by my side for the last five plus years and four battles with cancer. Everyone was also awesome about not treating me differently even when the side effects from chemo, radiation, and surgery started to take over. Instead, they helped me shave my head, pushed me in my wheelchair when I needed it, and always made sure I had food they knew wouldn’t make me sick.

Shannon Shepard: The most helpful response was from my family and the nursing staff. My mom was there majority of the time during the heavy treatment. When she wasn’t able to come and see me, the nurses who took care of me would play games, watch movies, and talk to me.

Kelsey Barbour: …everyone was extremely supportive, and even people I may not have been in contact with frequently reached out to me. I received wonderful cards and well wishes through social media, which was so touching.

James Berry: My friends and peers were super supportive of me during the time leading up to my surgery and during my year of treatment on interferon. They continued to invite me to everything and treat me like they always did. The side effects from my treatment were flu like symptoms, like fatigue, nausea, and extremely sore joints. Also my hair began to thin and fall out, and in hindsight I should have just cut my losses and shaved my head, but losing my hair would actually make me look like a cancer patient. Fortunately, my balding head didn’t affect the way my friends treated me throughout the year.

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Kelsey Barbour training for the 4K

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Jennifer McRobbie (third from left)

“The most frustrating response,  to be honest, was all the people that kept telling me, ‘You got this. I’m not worried.’ Or the alternative, ‘You’re strong.  You’ll be fine.’ Those statements were frustrating for me because the underlying message, at least in my chemo-addled brain, was that I didn’t have a right to feel scared.”

Q: What has been the most frustrating comment or response you received during treatment?

Brianne Kennedy-Brooks: The most frustrating responses–though made with good intentions–were always the initial, aghast responses of “Oh! But you’re so young!” when they would learn I had cancer. I understood their knee-jerk reactions of shock (after all, I felt it too), but it definitely made me feel more isolated when I walked around the cancer center and everyone just knew me as “the young, pretty one who brings presents.”

Olivia Marquart: The most frustrating part of treatment right now is knowing that my diagnosis will be a lifelong issue. Right now with my treatment plan I do not have an end date for chemo like most patients. Trying to explain that to people outside of the cancer world are sometimes frustrating because they don’t understand that every cancer is different. There is no cookie cutter treatment plan when it comes to cancer.

Jennifer McRobbie: The most frustrating response,  to be honest, was all the people that kept telling me, “You got this.  I’m not worried.”  Or the alternative, “You’re strong.  You’ll be fine.”  Those statements were frustrating for me because the underlying message, at least in my chemo-addled brain, was that I didn’t have a right to feel scared.  That if I had a bad day, it meant I wasn’t “doing cancer the right way.”  That I had to keep up the strong warrior front in order to live up to their “not worried” feelings.  It’s hard enough to say to your friends and family that you’re feeling vulnerable and scared and upset. It’s even harder to be vulnerable when you feel like there’s an expectation that you’re some battle-hardened soldier in the war on cancer.  These types of statements don’t acknowledge the range of emotions you feel upon diagnosis and during treatment.

Melinda Hood: By far the most frustrating thing, and this still happens, is the response “but you’re so young.”  Uterine cancer is most common among women in their 50’s and 60’s. I remember being in my oncologist’s office waiting for my appointment. A women leaned over and said, “It’s so nice that you’re here with your mom.” I just did the smile and nod. My cover was blown when my name got called for my appointment.

This is part one of a three part series. To be part of the conversation stay connected with us on facebook or twitter. Help spread awareness about Adolescent & Young Adult Cancer by sharing this post with family and friends! Cancer Changes Lives…So Do We!

Adolescent & Young Adult Cancer Awareness Week: Part 1 of a Three-Part Conversation with Survivors

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from left to right: Olivia Marquart, Jason Greenspan, Sonja Wagner (in yellow), Brianne Kennedy-Brooks (in yellow), Shannon Shepard

The first week of April is Adolescent & Young Adult Cancer Awareness Week – which is a big deal around here! To commemorate this special occasion, we have interviewed several members of our community. Each has been affected by this illness and has faced the 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 one of a three part series.  

“Cancer was something that happened to older people who had lived their lives already and were on their way out. Cancer wasn’t something that should happen to someone who was young, healthy and had so many plans ahead.”

Every year 70,000 young adults are diagnosed with cancer. That’s a big number – a really big number. And still, one of the biggest hurdles young adults with this disease face are feelings of isolation. While it isn’t uncommon, unfortunately, to know someone in their 50s, 60s or 70s with cancer, it is a different story for those under the age of 40. When it comes to finding peers to relate to, young adults with this illness struggle.

Q: How old were you when you were diagnosed? Before your diagnosis did you know anyone your age with cancer?

Christa Bennet: I was twenty-four, turning 25. Before being diagnosed I didn’t know anyone, personally, with cancer.

Gino DeFilippo: I was diagnosed with acute myeloid leukemia when I was sixteen in 2012. At the time I didn’t know anyone with cancer. I just kind of thought it was something that happened when you got older and there was no possibility for anyone active and healthy at my age. I knew of a few people who had cancer as a kid, but no one that had it as a teenager.

Sonja Wagner: I was nineteen years old and a sophomore in college. I had never met anyone my age who was suffering from cancer.

Brianne Kennedy-Brooks: I was diagnosed at the age of 30, with no family history, no risk factors, no warning signs…nothing. I was a rule-follower when it came to my health in every aspect. I was a girl who did everything right and never in a million years thought it could happen to me. Cancer was something that happened to older people who had lived their lives already and were on their way out. Cancer wasn’t something that should happen to someone who was young, healthy and had so many plans ahead.

Jason Greenspan: I was 18 years old when I was diagnosed with Testicular Cancer. I was diagnosed right before my Senior prom and graduation. I did not know anyone my age at the time that had cancer.

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Olivia Marquart

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Jason Greenspan

“When I was diagnosed, some friends were paralyzed with fear. Some sprang into immediate action. Others looked at me like they didn’t know me any more.”

Finding a reliable network of peers can be difficult for young adults facing cancer. When turning to friends who have no prior experience with a cancer diagnosis, support can be mixed at best.

Q: How did your friends/peers react to your diagnosis? And how did they react to the side effects of your treatment?

Olivia Marquart: Everyone reacted in their own way when they found out about my diagnosis. I had friends who heard my news and immediately offered their support. They were willing to help in any way. My friends understood when I was tired or couldn’t do much. They were more than willing to come visit or watch movies when I was on the couch resting. I also had people who heard my diagnosis and cut me out of their lives. They stopped talking to me and acted as if my diagnosis was an issue that wasn’t their problem.

Shannon Shepard: When I first told my friends I was diagnosed with cancer, they were sad and scared. They would keep in touch all the time. When I started having side effects and going through several complications, they started to drift away and not keep in touch.

James Berry: My friends and peers were super supportive of me during the time leading up to my surgery and during my year of treatment on interferon. They continued to invite me to everything and treat me like they always did. My family and friends are what got me through my treatment and I can’t thank them enough. The side effects from my treatment were flu like symptoms, like fatigue, nausea, and extremely sore joints. Also my hair began to thin and fall out, and in hindsight I should have just cut my losses and shaved my head but losing my hair would actually make me look like a cancer patient. Fortunately my balding head didn’t effect the way my friends treated me throughout the year.

Jennifer McRobbie: When I was diagnosed, some friends were paralyzed with fear. Some sprang into immediate action. Others looked at me like they didn’t know me any more. But, I can’t blame them. I didn’t really know myself any more either.

During treatment, I think people were surprised that I didn’t look *more* terrible. So, there was a lot of surprise that I was out and about.  I chose not to wear scarves or a wig when I lost my hair.  So, I just traipsed around bald. It was an issue of “owning it” for me.  But, my openness about it all might have made it harder on some of my friends. I mean, it’s hard to ignore when the symptoms are right in your face. Most of my friends were great about it and never showed that they were uncomfortable – even if they were.

Kelsey Barbour: Initially, I think we were all pretty shocked. In college, we tend to think we are invincible and our biggest challenge is getting out of bed for an 8 AM class. But I think being diagnosed with cancer really made me and even my friends take a step back. However, right from the start, everyone was so incredibly supportive of me and my family.

Melinda Hood: My friends and peers were in shock at first.  [But] overall, they were amazingly loving and supportive.  A friend who came over the night I found out brought a bottle of booze.  We talked and drank most of the night.  My main side effects were menopause, because my ovaries were removed, and the physical effects of the surgery.  My friends and my work were extremely understanding and accommodating.  “Need a nap in the middle of the work day?”, sure there’s the couch. “Pajama bottoms more comfortable to wear to work after surgery than regular pants?”, no problem!

This is part one of a three part series. To be part of the conversation stay connected with us on facebook or twitter. Help spread awareness about Adolescent & Young Adult Cancer by sharing this post with family and friends! Cancer Changes Lives…So Do We!

UCF Voted A Best Non-Profit Again In 2015!

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We are proud to announce that The Ulman Cancer Fund for Young Adults has been honored as a “Best Non-Profit to Work For” by The Non-Profit Times! Released on Wednesday, April 1st, 2015, UCF was placed fifth among all participating, non-profits and fourth among the small non-profits. This marks the second year that we have received this honor!

The Best Nonprofits program is one that is open to all nonprofits with 501(c)(3) status that have a facility with a minimum of 15 employees, in the United States. The assessment process was managed for The NonProfits Times by Best Companies Group (BCG) in Harrisburg, PA, an independent workplace research firm specializing in identifying and recognizing great places to work throughout the United States, Canada and the United Kingdom. The driving questions that determine the overall rankings came down to, “Do you have confidence in the leadership of your organization?”, “On most days, do you feel like you have made progress at work?”, and “Do you feel part of a team working toward a shared goal?”

Of the small organizations (with 15-49 employees), one of the biggest factors between those that made the cut, and those that didn’t, were on issues of flexible office hours and telecommuting. The second biggest factor that separated the winning small non-profits from the rest were those organizations that promoted exercise and provided wellness programs in the workplace.

“We are honored and proud to be recognized by The NonProfit Times as a Best Nonprofit to Work for 2015,” said Brock Yetso, UCF President & CEO. “Our team works hard each day to provide a community of support for young adults and their loved ones affected by cancer. It’s rewarding to know that the organization is also providing a great work environment for our passionate and dedicated staff.”

Read more about the results of The NonProfitTimes Best Nonprofits to Work 2015 here.

Just Say No to Tanning Beds!

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#facingtheissues, by Sharon Curran

Spring has finally sprung here in Baltimore (though the brisk drizzles we’ve had might make you say otherwise)! No one will argue that it’s been a long, cold, grey winter and most of us are looking forward to the warmth of the sun and a glow on our skin to bring in the summer. For some that means getting a jumpstart on their “tan.”

Now let’s get serious…ultraviolet radiation from direct natural sun exposure or indoor tanning poses a serious health risk. Specifically it can cause skin cancer. There is an abundance of health promotion education available regarding the risks of tanning. Despite that, a large percentage of young adults, particularly high school and college aged young women, reportedly continue to indoor tan. In a recent study published in the American Journal of Health Promotion, the authors reported the “psychosocial motivations to tan sometimes outweigh the young women’s concern for the health risk”. (Heckman, et al , 2014, p. 168). The article cites the most common reasons for regular indoor tanning are “appearance enhancement, direct emotional effects such as relaxation, enhanced mood, stress relief, and improved energy”. (Heckman, et. al., 2014, p. 168). The article addresses both the psychological and addictive symptoms of young adult female tanners.

This is a really serious topic, when it comes to indoor tanning “just say no!”. To add a little FUN to this Facing the Issues post, I’d like to share a few songs about the sun!

 

Source Citation

Heckman, C. J. , Cohen-Filipic, J., Darlow, S., Kloss, J. D. , Manne, S. ,Munshi, T., (2014). Psychiatric and Addictive Symptoms of Young Female Indoor Tanners. American Journal of Health Promotion. Jan/Feb2014, Vol. 28 Issue 3, p.168-174.

I Got Cancer, Bud!

An Initiative To Legalize Marijuana In California To Appear On Nov. Ballot

#facingtheissues, Meg Fitzgibbons

“…We already know it can help alleviate pain, increase appetite, and reduce stress, so why not?”

When John, a ​twenty-seven year old patient being treated for a brain tumor at ​a major national cancer center was asked whether he would consider a clinical trial involving marijuana to help with his cancer, he said “I would be interested in it. We already know it can help alleviate pain, increase appetite, and reduce stress, so why not?”  Thirty-eight year old Jay, treated for the same diagnosis, said of a marijuana treatment for brain tumors, “If we lived in a world where this approach to treatment was tested, proven, and accepted by medical professionals, I personally would have no problem consenting to it.”

Marijuana, or cannabis, is a plant that hails from Central Asia. Now grown throughout the world, the cannabis plan produces compounds known as cannabinoids. These are the active chemicals in marijuana that impact the body – from the central nervous system to the immune system.

So what exactly does marijuana have to do with cancer?

The assertion that marijuana’s cannabinoids alleviate some of the symptoms of cancer and treatment (such as chemotherapy) is not a new one​, but one that is still highly (excuse the pun) debated.

The American Cancer Society relays that “marijuana is promoted to alleviate pain, control nausea and vomiting, and stimulate appetite in people with cancer.” In 1997, the Office of National Drug Control Policy commissioned the Institute of Medicine to assess marijuana’s health benefits and risks pertaining to cancer treatment.

The results confirmed that there are positive effects of marijuana during cancer​​. However, because marijuana contains numerous active compounds, it cannot be expected to provide precise effects unless the individual components are isolated.

More recent laboratory studies have shown that delta-9-tetrahydrocannabinol, or THC, and other cannabinoids slow growth and/or cause death in certain types of cancer cells. Some early human clinical trials of the effects of cannabinoids on cancer have indicated that they can be safe in treating cancer, but they have not been shown to control or cure the disease yet. A brand new study out of the University of London suggests that two of marijuana’s key ingredients, THC and cannabidiol, can help to shrink brain tumors. This article highlights the results of the study and explains how the cannabinoids act on the glioma cells (cells in the brain)​.

There is a lot of information about marijuana use and cancer (both pro and con). You can find additional information related to the use of cannabinoids to treat cancer and its side effects below.

  • The National Cancer Institute addresses cannabinoids’ antitumor and appetite stimulation effect here;
  • This American Association for Cancer Research journal article reviews recent work examining potent, nontoxic, and nonhabit forming cannabinoids for cancer therapy;
  • And here, the University of Sydney reviews the limitations of cannabinoids’ effects.

It is important to note that possessing or selling crude or raw marijuana is still illegal under federal law in the United States.

The Ulman Cancer Fund for Young Adults does not condone the use of marijuana recreationally or without guidance or supervision of a physician. 

UCF Acquires Ride Across Maryland

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Two Maryland Charities Join Forces To Grow Cancer Support Resources!

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The Ulman Cancer Fund for Young Adults, Inc., and the Ride Across Maryland Foundation, Inc., are joining forces to better serve the cancer community. Both organizations have long recognized the importance of providing direct support to patients and families affected by the disease and believe that coming together will serve even more people in need.

The Ulman Cancer Fund began in 1997, shortly after Doug Ulman, a then 19-year old student and athlete at Brown University, was diagnosed with cancer, not once, but three times. Readjusting to college after such life-altering events proved challenging, and few resources existed at the time to address the unique needs of young adults affected by cancer. Recognizing this void of support, Doug and his family created the Ulman Cancer Fund for Young Adults, which works at both the community level and with national partners to raise awareness of young adult cancer and to equip those affected with both an empowering voice and essential resources. Believing that every young adult diagnosed with cancer deserves hope and support, the Ulman Cancer Fund strives to improve lives through collaboration, perseverance, integrity and compassion.

The Ride Across Maryland Foundation began in 2000, by Dick Gelfman and his family. Dick was a well-known attorney and reporter for WJZ-TV in Baltimore. He was an avid motorcyclist and thankful for having a healthy family. He brought together a group of friends to organize an annual motorcycle ride that would raise money for the fight against breast cancer. The first ride was in 2001, and since that time, the Foundation has awarded over $2.5 million to various organizations that assist patients and their families dealing with breast cancer.

2015 will mark Ride Across Maryland’s 15th Anniversary, and according to Gelfman, “This is the perfect time to join forces with an organization like the Ulman Cancer Fund that has a proven track record of making a direct impact in the lives of people affected by cancer.” As the Ride transitions into an event that will support the mission of the Ulman Cancer Fund for Young Adults, the Ulman Cancer Fund will create a new scholarship that will be awarded to a young adult breast cancer survivor or young adult impacted by the breast cancer diagnosis of a parent or sibling. It will be called The Ride Across Maryland Scholarship.

About the acquisition, Brock Yetso, CEO of the Ulman Cancer Fund for Young Adults, commented, “We are thrilled to add The Ride Across Maryland to the Ulman Cancer Fund’s already robust platform of awareness, support and fundraising events. On a personal note, I have known the Gelfmans since I was a young child, and both of our families’ lives have unfortunately been impacted in a significant way by this terrible disease. We are honored that Dick and the Ride Across Maryland Board are entrusting us to sustain and grow the Ride Across Maryland, and I am confident that we will be able to help more people affected by cancer as a result.”

As an event of the Ulman Cancer Fund for Young Adults, funds raised through the Ride Across Maryland will make a direct impact on the lives of young adults impacted by cancer, including young adults fighting breast cancer. The organization will continue to be known as the Ulman Cancer Fund for Young Adults, with offices in Columbia and Baltimore.

To register for this year’s event, which will take place May 30-31, please visit www.rideacrossmaryland.org.

About The Ulman Cancer Fund for Young Adults:

The Ulman Cancer Fund for Young Adults, founded in 1997, is the national leader in providing specialized support for young adults affected by cancer. With nearly 70,000 young adults diagnosed every year, UCF helps young people fight the disease and navigate treatment by providing access to information and other specialized programs. UCF Patient Navigation can be accessed remotely or through onsite Patient Navigators at a growing number of hospitals in the Mid-Atlantic region. UCF changes lives by creating a community of support for young adults, and their loved ones, as they fight cancer and embrace survivorship. For more information, please visit, http://www.ulmancancerfund.org.

Media Contact Information:

Shara Boonshaft UCF Director, Development & Stewardship 

(410) 964-0202 x 112, shara@ulmanfund.org