Amanda’s Story

I was 23 when my life changed forever.

I know this isn’t a groundbreaking statement – lots of people graduate, get a new job, get married, or do other life-changing things at 23.

I got cancer.

I had graduated from the University of Hartford and stayed on campus to get a Doctor of Physical Therapy degree. I played Division I basketball at Hartford and was excited to go into a career related to sports. My plans were interrupted though, when a chronic health issue I’d quietly managed on my own got out of control.

For seven or eight years, I had been dealing with an embarrassing problem – gastric distress and bleeding – on and off; sometimes mild, sometimes severe. I hardly talked to anyone about it, and when doctors played it down, tried to blame it on my diet, or told me to wait it out, I just accepted what they said. I had to miss a game now and then, but overall I learned to live with it. What I realize now is that I was living with a pit in my stomach every time I would see that blood, but not want to talk to anyone about it.

During my first year in the DPT program, I got pretty sick and felt like I had to push harder for a diagnosis of some sort – that pit was telling me that something bad had to be going on. It was really hard to advocate for myself. Little did I know it was the first of many times I would have to speak up more than I felt comfortable with or make a decision I didn’t feel ready to make.

I had a colonoscopy and was expecting to hear that I had Chron’s Disease or IBD.

Nope – colon cancer. WTF.

I had been prepared to give up gluten, but I was NOT ready for moving home, putting down tens of thousands of dollars for fertility preservation, surgery, chemo, radiation, losing tons of weight, botched surgery, more surgery, hysterectomy, ostomy bag.

I also wasn’t ready for the feelings I had when I started my PT clinicals. I would go straight from the infusion room to the PT clinic, from hearing deathly ill people talk about their hopes of healing to hearing perfectly healthy people complain about how much a sprained ankle was cramping their style. I may have been the youngest person in that room getting chemo, but I felt for all of those survivors beside me and realized I wanted to give back to people like them.

After I was through with that litany of treatments and learned to live with my ostomy, I enrolled in nursing school at Johns Hopkins and a year later started working on the adult inpatient leukemia unit. I was so happy to be in a place to support these people I shared a kinship with.

But when I left work every day, I was alone. Forget dating – there was no way I was getting close to intimate with anybody with my new “companion” always at my side. No social sports or working out to relieve stress either; I didn’t think intense physical activity was an option for me anymore.

Then a friend from high school who also lives in Baltimore told me about the Ulman Cancer Fund and its Body of Young Adult Advisors. I checked it out – somewhat hesitantly – but once I was halfway through my first BOYAA meeting I knew I had found my place. These people looked and acted like me, and they spoke my cancer language. For the first time, I had peers my own age who could actually understand what I had been through, and some had even been through similar experiences themselves.

Before I knew it, I had signed up for Point to Point, and was going to have to figure out how to RUN from Baltimore to Key West. Cancer is still the toughest thing I have overcome, but this experience ended up being a very close second! The first few days, it was so hard to get through ten miles, but with Ian, Brock, and a bunch of other new friends – no, family – by my side, I managed to tick them off one by one.

I also managed, for the first time, to truly TALK about my experience with cancer. My Point to Point teammates were willing to put their own problems and priorities aside and just listen to me. Each of them had their own story, and in sharing theirs, they helped me be able to share mine, knowing I wouldn’t be judged or questioned or stigmatized or forgotten.

My life was changed forever at 23 when I learned I had cancer. And it was changed again at 26 when I came to UCF.

I know you have made a donation to UCF at some point, so in some way, you are part of my story. Thank you for giving, so that this organization and these people were here when I needed them. I know it sounds cheesy, but you have made all the difference.

As you could probably tell from earlier in my story, I don’t like to ask people for help. But I’m going out of my comfort zone to ask you to contribute again this year to the Ulman Cancer Fund. I know, without a doubt, that your support – financial and moral – will help someone else like me regain their body and their confidence after cancer.

Cancer changes lives…so do you.

Sincerely,

Amanda Weaver

Fight to Understand Post-Traumatic Growth

Post-traumatic growth experienced by young adult cancer patients is a topic worth talking about.

The literature in the link below reveals there are some aspects of a cancer patient’s life that may be enhanced by their cancer experience. Young adult cancer survivors often report stronger interpersonal relationships with family and friends with whom they closely shared their cancer experience. Additionally, the young adult cancer survivors report feeling more compassion for others who have suffered similar or other types of physical or emotional pain.

Read more here- http://www.simmsmanncenter.ucla.edu/index.php/resources/articles-from-the-director/finding-benefit-post-traumatic-growth-and-cancer/

By Sharon Curran, Young Adult Patient Navigator, GBMC

 

Knockout the Feeling of Social Isolation

When adolescents and young adults (AYAs) are admitted to the hospital for extended periods of time, they often feel isolated and disconnected from their peers. While inpatient for treatment, AYAs can miss out on events like prom, graduation, weddings, and other group gatherings that are considered major life milestones. Social media has made it possible to see, and even participate in, what friends and family are doing outside of the hospital. Occasionally, that can make the feeling of isolation greater. Social isolation includes more than missing out on activities. Teens and young adults can also feel socially isolated by the lack of independence that often accompanies a cancer diagnosis. While their peers are leaving the nest and starting careers, AYAs may need to move back home for more support and care. In addition, teens and young adults don’t always know what to say to their friends battling an illness. Sometimes, they say nothing and friendships can suffer. Body image challenges, such as ports or bald heads, can make people anxious about going out in public and attending social events.

The important thing to remember during the whirlwind of cancer treatment is that no two stories are exactly the same, and your cancer experience is just another piece of the puzzle that makes you unique. Adolescents and young adults, with a cancer diagnosis or without, are in a phase of transition and are usually unsure about the next steps in life. Unquestionably, a cancer diagnosis makes this phase of life more difficult. BUT REMEMBER: in the end, everyone this age is faking it and no one knows what they are doing.

Cards for when you don’t know what to say to your friend with cancer:
http://www.boredpanda.com/empathy-cards-cancer-postcards-serious-illness-emily-

Where to purchase trendy beanies: http://www.loveyourmelon.com/

“Psychosocial Aspects of Cancer Diagnosis and Treatment”: http://www.ncbi.nlm.nih.gov/books/NBK179872/

Life With Cancer Young Adult Support: https://www.lifewithcancer.org/young_adults.php

Stupid Cancer (online community of support): http://stupidcancer.org/

By Allie Isaacson, Young Adult Patient Navigator, Children’s National Medical Center

Ulman Cancer Fund to Build First-of-its-Kind House in East Baltimore

Ulman Cancer Fund for Young Adults to build first-of-its-kind house in East Baltimore for young adult cancer patients and families
House announcement accompanied by launch of a $3 Million Capital Campaign


BALTIMORE, MD – February 3, 2016Among an audience of more than 700 supporters, patients and corporate partners at the organization’s annual Blue Jeans & Bowties Ball, the Ulman Cancer Fund for Young Adults (UCF) announced the official launch of a $3 Million Capital Campaign and the organization’s biggest project to date – building The UCF House. The Campaign is the most ambitious fundraising initiative in the Ulman Cancer Fund’s 18-year history and includes a priority to serve an unmet need of patients in the community, providing free housing for young adult cancer patients and their families while receiving treatment in Baltimore.

“Young adult patients age out of many other facilities or don’t find critical peer support at non-age specific facilities. With treatment protocols that require them to stay near hospitals for long periods of time, housing can be crippling financially and prevents some young adults from receiving treatment at top-notch Baltimore hospitals,” said Brock Yetso, President & CEO of the Ulman Cancer Fund for Young Adults. “Our organization exists to remove barriers and drive change – for years we’ve wanted to make this home away from home for young adult cancer patients and their families a reality, and now it is becoming one.”

Through a strategic collaboration with East Baltimore Development, Inc. (EBDI) UCF was able to acquire four attached row homes on East Madison Street, just north of the Johns Hopkins Hospital campus. “We’ve been welcomed into the community by EBDI and we couldn’t be more excited to be a part of the neighborhood’s transformation,” said Yetso.  UCF also has the support of District 45 legislators, Senator Nathaniel J. McFadden and Delegate Cory V. McCray, who are sponsoring a bond bill requesting funds for the project.  “Fostering relationships between the public and private sectors is key to addressing challenges in our city, and I am encouraged and inspired by UCF’s interest in helping to strengthen our community,” commented Delegate McCray.

Visioning sessions with medical professionals, patients, and caregivers, and planning meetings with architects and builders led to the design of a unique, comfortable, supportive, and empowering space that will include eight family suites, a gym/wellness space, a relaxation space, resource library, outdoor space in the forms of a backyard and a rooftop deck.  The UCF House will be conveniently located within blocks of Johns Hopkins and a short distance to other downtown Baltimore cancer centers.

Dr. Kenneth Cooke, Director of Pediatric Blood and Marrow Transplantation Program, The Sidney Kimmel Comprehensive Cancer Center of the Johns Hopkins University School of Medicine, works closely with young adult cancer patients and is supportive of UCF’s efforts to open The UCF House.  “Young adults fighting cancer face real challenges when it comes to finding affordable housing during treatment, in particular when they have to stay within a few miles of the hospital for 100 days after a bone marrow transplant.  The UCF House will meet this need and offer a place where young adults can find much needed peer support and a sense of community.”

The House will cost approximately $1 Million to build and open, and $200,000 to operate each year. UCF has embarked on a Capital Campaign to raise $3 Million with three priorities – to build the House and raise funds to operate it for the first three years, grow the organization’s endowment, and enhance existing programming for young adults and families impacted by cancer.

At the time of this announcement, the organization has reached two-thirds of the campaign goal during a “quiet phase” thanks to generous lead gifts from The Kirk Family Foundation, The Geaton and JoAnn DeCesaris Foundation, The Bradley T. MacDonald Family Foundation, and The Family of Jamie L. Roberts. Every UCF staff member has made a personal contribution to the Campaign, with total staff giving exceeding $100,000.  At the event Saturday night, when the Campaign was officially launched, an inspired audience made gifts totaling over $100,000 towards the Campaign.  The event raised well over $300,000 in proceeds.

The UCF House is expected to break ground before the close of the first quarter with a projected completion date before the end of the year.  The Capital Campaign is now public and every dollar donated will help change a life. About her family’s gift, Kellie MacDonald shared, “As a family that has personally been impacted by cancer and benefited from the great work of the Ulman Cancer Fund, we’re thrilled to support this Campaign and The UCF House.  We have a rare opportunity to be involved in a labor of love to improve our city and change the face of cancer care for young adults in Maryland. Together we can make a difference now, and I encourage others to consider joining us as we bring support and hope to patients and families fighting cancer here in Baltimore.”

To learn more about how you can make an impact, please visit www.ulmancancerfund.org/theucfhouse or contact UCF’s Development Director, Shara Boonshaft, at (410) 964-0202 x112 or shara@ulmanfund.org.

#FacingTheIssues – The Heartbreak of Hair Loss

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

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

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

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

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

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

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.

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.