A father-daughter relationship

Friday during the Radiothon, John from KSON’s John and Tammy morning show asked me about my relationship with my dad. He has two daughters, one about middle school age and the other almost high school age. We’ve talked a lot about my history and he knows my Dad had cancer when I was around the same ages as his daughters. My dad and my’s relationship isn’t something I really think about that much because it’s just there. But when I do think about it, I realize that because of my age when my dad had cancer, I feel like we have a hard time understanding each other.

The end of elementary school/ beginning of middle school is that weird age of learning who you are and beginning to really experience it. Jackie and Dr. Vicario did a great job of keeping our family together and making things work as well for us as they possible could, but there’s still going to be healing that needs to be done within the family itself. Because I was so scared of  the “c-word” I distanced myself from my Dad, especially after my Grammy passed away. As I’ve said before, her passing away really made it difficult for me to be okay with cancer again, so for a while I lived in constant fear of my dad relapsing and I think that caused me to really push him away.

Our relationship has gotten a lot better and I think that’s a lot in part because of what Dr. Viacario and the cancer center continues to do for me, as well as what St. Jude continues to do for me. All of these people and things teach me how to be okay with having a little bit of fear, after all, that’s totally normal, but they also teach me how to heal and be okay with cancer, which helps me heal my relationship with my father. Cancer does not define us or our relationship. It is only one part of our story.

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Connections in the best of places

So I at the gym tonight, like any other night, and CNN was on the television. My friend David owns a clothing/skate line that gives back to animal rescues and was invited to attend the CNN Heroes presentation as a guest. You can check out his stuff at: www.hendricksboards.com. Anyway, back to the point, I like to support David in everything he does so I was watching while “ellipticaling” it up. Then, a man came on with his son to talk about their organization “Gridiron Heroes“. Eddie’s son got a spinal cord injury during a football game. Instead of living in their own misery, they began to help others dealing with the same injuries.

Eddie mentioned during his background video that  every time they show up in a hospital room to see another kid going through what his son went though, he relives the nightmare over again, but he knows he has to keep helping others heal. I definitely began crying on my elliptical, right there in the middle of 24 hour fitness, because I know exactly how he feels. Every time I meet a patient or a family member of a patient, I relive those nightmares of cancer diagnosis’ again. I relive that moment when my parents told me my Dad had cancer, or when they told me my Grandmother had cancer. I relive every single unfortunate second of their illnesses, but it makes me stronger. It gives me the strength to continue on in their honor and their memory. As hard as it is for me to go through those moments again, they help me help others. If my pain can help even one patient and one family it is completely worth it and it makes me feel like I am living a life of purpose.

Sometimes, though, I don’t think of it as pain. I think of it as a learning experience. I have learned so much from those diagnosis’ and from the journeys that cancer has taken me on, I’m just lucky enough to be in a position to share my experiences and life with those who need it the most.

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An inspiration

As I’ve mentioned before, I didn’t always view cancer the way I view it now. It used to be the “c-word”, something that was bad and deserved to be placed into a box very, very far under my bed. Anytime someone said the word, shivers flew up my spine and a darkness washed over my face. I hated the word and everything it stood for: pain, heartbreak, death. It didn’t deserve to be on the same playing field the rest of the world was on. But then, something incredible happened. Genentec, the company that created my Dad’s treatment Rituxan, asked my parents to step in as spokespeople for the drug.

My parents were suddenly jetting off to awesome locations-Chicago, New York, Santa Barbara, and taking photos, doing interviews and changing the way people think about cancer. One interviewer called my Dad’s cancer “mysterious” and his treatment a “miracle”. I was in awe that this terrible thing that haunted my dreams and memories was suddenly something that could make a difference-the things my parents were saying and doing were going to help others going through what my family went through. My parents were becoming the voice of patients and caretakers. The were, and are, determined to make cancer a thing of the past.

Because of our experiences with cancer after remission, we have had the ability to change the the way that some people think of cancer and especially the way that we think about cancer. The photo below is a screen shot of the Rituxan Website. That’s my Dad all up in your business in the red sweater. If you click through the site, there are pages where my mom talks about being a caretaker and the struggles that come along with having to be a caretaker for your loved one, but also a caretaker for everyone else in your family. This brings up the question, to me at least, who takes care of a caretaker? Its almost as if there isn’t enough time in the world to take care of everyone, which is why we need our hospitals and their staffing to take care of a whole family.

 

Dad on the Rituxan website

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Life is so unfair.

I have Gilberts Syndrome. It’s basically an illness that really doesn’t do much. Some people don’t even know they have it. Then, there is the rest of us. Gilbert’s causes high bilirubin counts and makes it difficult, for me at least, to break down certain medications without immediately feeling ill. When I was diagnosed with GS, it was recommended that I make some dietary changes since my bilirubin levels do make it difficult to digest. I am gluten free, hormone and antibiotic free and I don’t have caffeine or alcohol. I get blood tests done pretty regularly (when I was first diagnosed I had 8 within 2 months) just to check on my bilirubin levels, but I can always tell when it is acting up, such as when I’m stressed out or don’t get enough sleep. Sometimes, I feel like I have rocks in my stomach and it is the number one most uncomfortable thing I have ever dealt with. That rock feeling makes me want to cry sometimes because, well, life can be so. un. fair. Life is really unfair when I DD for my friends on the weekends and I can’t even have a rum and coke to get the party started. But then, I think about all those children, lying in hospital beds across the nation and across the world, battling for their lives. Their parents sit at their bedsides tirelessly, praying for miracles and my stupid little illness doesn’t seem so bad anymore. I always feel guilty thinking about those beautiful kids sitting in their hospital beds so fragile. How could I even begin to imagine their pain? How can I even begin to complain about my stupid illness that makes me eat healthy when somedays, these kids are too sick to even eat? And besides, me being 100 percent sober means that all of my friends get home safely and I never wake up with a hangover. Life isn’t so bad when you look at the bigger picture.

So let’s look at another bigger picture. By the end of this year, the American Cancer Society predicts that 163,480 people will be newly diagnosed with cancer in California alone. For the entire country, that number is 1,596,670. These are huge statistics. We cannot continue to let cancer have this kind of effect on our lives. We have to do something about it now, and that starts with healing our current patients and families. Creating this protocol would mean helping our families heal from the beginning, instead of attempting to heal them when it may be too late, or never healing them at all. Secretary Kathleen Sebelius, the time is now to create a standard of care that our families deserve. A standard of care that says “we will never give up, especially in the darkest of hours.”

My friends and me last night- a sober DD is a fun DD

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Care today for your future tomorrow

I mentioned a couple of posts back that I had another story I wanted to share, so here it is.

This summer, while visiting St. Jude with hundreds of other college students, we met a variety of patients and families. One of the families consisted of two young parents, who could have been older than 25/26 and their two children; a baby probably about a year and their daughter who was a little over two. Their daughter had been diagnosed with a blood cancer just a few months before but you couldn’t tell just by looking at her. Microphones were passed between a few parents who were talking about their children and this little girl picked up her mom’s microphone and started saying “Hi Daddy!” and waving to her father in the audience. Of course, everyone melted with “aw’s” while the little one, completely oblivious, danced a little number on the stage. My friend, Barbara, and I looked at each other with tears in our eyes as her mother described their story of hope, courage, and faith.

A few months before the collegiate leadership seminar, their family had received the news that their eldest child might not make it to her third birthday. Living only a short distance from the hospital, they packed their bags and headed to Memphis. Their daughter was put on a program of chemotherapy and radiation for a 2 year program. She will hopefully be finished with treatment about the time of her fourth birthday. Then, her mother described a vivid memory of her first trip to the hospital, just a few years before while she was in college. She said she could remember walking up to the desk with her sorority sister, a check in hand, to give a donation from their most recent philanthropy event, not thinking about any kind of impact her check would have. She didn’t think about it because the hospital didn’t affect her. She wasn’t sick, she didn’t have a sick family member, and she didn’t even have a friend who had dealt with the disease; what did it matter?. It was then that she revealed she is a Delta Delta Delta; one of my sisters. What she knows now is something that I wish so many others would realize: cancer and other catastrophic illnesses strike when you least expect them. You may be a 20 year old college student one day and the next thing you know it, you are a 25 year old mother of two with a child who is fighting for her life.

The truth is, so many of us struggle on a daily basis with so many things that we don’t think we can handle, or that we don’t want to handle, but there are children and families like the ones I’ve been talking about that would give the world to stress out something as small as finals instead of stressing out about getting to a chemotherapy session, or paying for treatment.

Myself and a few sisters from other DDD chapters across the US at St. Jude

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What do we want? Partners in Hope!

Talking with Nick on KSON

Today, I’m at the Country Cares for Kids St. Jude Radiothon. KSON radio in San Diego is our host station for the event. I am here on behalf of the hospital, and of course, on behalf of myself. I have this belief that when we do things for others, we are healing ourselves and really, I love being around the people who work in our St. Jude Los Angeles office so much because they care so selflessly to make a difference that I don’t even mind that I’ve been here since 5 a.m and it is currently 10.30 a.m. and I will be here until 7.30 p.m. Did I go to bed at 1.30 a.m. and wake up at 3.45 a.m.? Yep. and I’m freaking tired. Preparing for finals is 100% kicking my butt, and frankly my eyeballs are really sad they’re still open. But let’s focus on something really amazing. This is the second day of the radiothon and we have raised (drumroll!!!!!!!!!!!!!) $100,135!!! which is absolutely spectacular. I am so proud to be a part of this organization, and to be a part of a San Diego Community that gives so much. We’re still going until 7 p.m. tonight

So, I started this post yesterday, then go so caught up in the radiothon that I had to stop posting! Anyway by the end of the day, we had raised over $171,000!! I am so proud and blessed to be a part of an organization that can give people the amazing opportunity to be a part of something bigger than themselves, and to be a part of an organization that brings families back together, instead of tearing them apart. I took a few moments to talk with Nick from KSON on air about my experiences with the hospital. It is always rewarding to talk about your experiences with something, especially when that something is so close to your heart.

I am the perfect person to help create the healthcare protocol because of my experiences. I understand the feelings of being a part of a family that has experienced a cancer diagnosis, and a part of a family that has overcome that diagnosis with help from doctors, nurses and staff that care. If we focus on healing a whole family, we can begin to heal our system.

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Life after cancer

I think about cancer every day of my life. Whether it’s about my dad’s diagnosis, my grandmother’s, my mother’s, my aunt’s, my almost diagnosis, or that of the patients I work to better the lives of every day, it is never far from my mind. My dad’s diagnosis has had a huge impact on my life. As I’ve discussed in previous posts, his was the first personal impact cancer had on my life. My dad’s father died when my dad was 17 of larynx cancer, but being so far removed from the situation, I didn’t understand its impacts.

I frequently referred to cancer as the “C-word” when I was younger, as it seemed like the right thing to do. It seemed like cancer deserved to be placed in this box, like a bad word, that couldn’t touch me. If I placed it in this box, I was in change; it had no ability to effect my life. It was my way of saying “Cancer, you have no say over my life”. But unfortunately, cancer did have a say in my life. It barged into my home like an unwelcome guest and set up shop before I even had a chance to kick it back out. But you know what? Cancer doesn’t rule my life anymore because I don’t let it. The first person to give me that power was Dr. Vicario, my dad’s oncologist. He told me things like “We’re going to beat this” “We won’t stop fighting” “We will never, ever, give up”. Dr. Vicario made me a part of the solution. Where cancer was the problem, we were the equation to fix it.

I have read and heard hundreds of patient stories since beginning my journey with St. Jude Children’s Research Hospital. There are two that have really stuck out me and I’ll share one now and one in another entry.

As I’ve mentioned before, I spent a weekend at St. Jude this summer. It was for a Collegiate Leadership Seminar (or CLS) in which hundreds of students from across the nation, members of Greek Chapters (like mine-Delta Delta Delta) and members of St. Jude’s Up Till Dawn group, joined together to unify our fights and our journeys. On the second day of my visit to St. Jude, we took a tour of the hospital. We were down by the Kay Cafeteria (named for Kay Jewelers, who sponsored that area of the hospital) and watching families choose their meals from hundreds of different varieties. Just to clarify, St. Jude does not provide “hospital food.” They provide deliciousness wrapped in amazing.  Anyway, our tour guide was telling us a story of an international patient who was at the hospital for treatment. The young girl was having difficulty adjusting to the weird American food that we all love, and hardly ate a thing. When you’re in treatment, it is obviously imperative that you are receiving adequate nutrients so that your body can fight the disease. Having realized that she wasn’t eating the food the hospital provided her, her doctor spoke with her mother. He asked her about all of the foods that she preferred, and the ones that she turned her nose up at. Her mother told the doctor about a fruit dish that her daughter loved, but the fruit wasn’t native to our country. The next day, the doctor arranged for a shipment of the ingredients to be delivered to the hospital, and a chef to prepare it- all on his own dime.

That story literally brings me to tears every time I think about it. To think that a doctor would care so selflessly about his patients is incredible. But it lead to me think, shouldn’t all doctors and hospital staff care about their patients that much? Dr. Vicario and Jackie cared about my family that much. I’m not by any means saying that a doctor should have to go to such extremes and pay for things like those mentioned above in every single patient case, but what I am saying is that a hospital staff should care enough about their patients that they would be willing to run to the end of the world and back.

Secretary Sebelius, from all of the research I have done regarding you, I know you care about the welfare of our people-caring about the whole person, not just the medical things a doctor can do to heal. It says so right in your title: Health and HUMAN services. We can do this together, if we can agree that a change needs to be made. We can provide our country’s patients the care that they need to heal in, and out, of the hospital.

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