My Hodgkin’s Lymphoma Survivor Story

In January of 1995 I was 32 years old and had an almost 4 year old son and a new baby boy- just 6 weeks old. I felt a lump on my neck near my right collar bone. It was just the size of a pea. My sister in law, a nurse, said it was probably nothing, but I went ahead and asked my obgyn at my 6 week appointment. He also thought it was nothing but said to see a surgeon if it would make me feel better. I have always been proactive when it came to health so I booked an appointment with a surgeon. The surgeon also thought it was nothing and gave me antiobitics. A week went by. The lump still didn’t go away, so he said he would remove it and biopsy it, 99% chance it was nothing, just an infection. So I went into the little surgery not being worried about it. I had the surgery on a Friday and it took longer than expected. The surgeon told my husband he suspected something. My husband didn’t tell me that because he didn’t want me to worry all weekend. So finally on Tuesday the doctor’s office called me and over the phone said “You have Hodgkin’s Lymphoma but it is one of the best kinds of cancer”. I was a bit freaked out. I immediately called my husband, who was at work and then rushed home. But first he called his sister, the nurse, to talk to me and calm me down.

Then I called my best friend Amy, whose dad is a doctor in Tulsa, to find out who was the best oncologist around. He called back and told her Dr. Alan Keller with Cancer Care Associates. It just so happened that Amy was going to a cocktail party that night and the CEO of Cancer Care was there. Amy talked to him about me. I got an appointment booked to see Dr. Keller. But before I saw Dr. Keller, I saw another oncologist first that my surgeon had recommended. He was from another country, and was really nice but I found him hard to understand. He said for me to be “cautiously optimistic” with my prognosis. The one thing I remember that I didn’t like was that his office was dark and dreary. It is amazing how little things like the doctor’s office atmosphere can affect someone.
I went in to see Dr. Keller and instantly knew I was at the right place. Their atmosphere was cheerful. Dr. Keller was incredible. He also was optimistic with my prognosis and made me feel like the treatment was just something I had to go through to get better. Hodgkin’s is usually very curable today. It wasn’t 40 years ago. In fact, my next door neighbor’s first wife had died from it after their first baby and she was just in her 20′s .  Our next door neighbors were 30 years older than us and like our 3rd set of parents. They were very upset when they heard what I had.

Immediately Dr. Keller did a bone marrow biopsy on me to help with the staging. Wow, that was the most painful test in my hip but it lasted just a split second. Luckily, it had not spread to my bones. Then I had to have other scans and tests. I was staged as a 2A. 2 because it had spread from my neck to my chest (I had a mass in my chest). “A” means I had no symptoms. Some people experience fatigue, night sweats, and weight loss. I didn’t have any symptoms but the lump in my neck. Hodgkin’s disease is considered one of the most curable forms of cancer, especially if it is diagnosed and treated early. The cause is not known. Hodgkin’s lymphoma is most common among people ages 15 – 35 and 50 – 70. Infection with the Epstein-Barr virus is thought to contribute to most cases. Another interesting thing I have heard is that many people who have had Hodgkin’s have had Mononucleuosis. I had mono in my 20′s. Unlike other cancers, Hodgkin’s disease is often very curable even in late stages.With the right treatment, more than 90% of people with stage I or II Hodgkin’s lymphoma survive for at least 10 years. If the disease has spread, the treatment is more intense but the percentage of people who survive 5 years is about 90%.
Dr. Keller advised 6 months of chemotherapy (every 2 weeks) followed by  6 weeks of radiation for me. He said if I had both, my chances of survival were 98%. He said most often, if it were to reoccur, it would come back within 2 years (glad that was 16 years ago!). They got started with my treatment very quickly after I was staged. I started treatment the day after my older son’s 4th birthday.
My friend Amy had another friend, Teresa who was diagnosed with stage 4 Hodgkin’s at the same time as me. We met each other and kept each other posted of our treatment. She is now fine today too!

There was a silver lining to my cancer. My faith was really strengthened and I realized how many blessings I had in my life. Friends and family were making me meals, hiring a cleaning lady, helping in so many ways I almost felt guilty, but then I realized that it was a way they could feel better and contribute to what I was going through. My mother in law was incredible; every 2 weeks when I had chemo the boys and I would spend a night or two at her home and she took care of us. I kept telling myself that God had a plan for my life and I was going through this for a reason.
People were surprised at my positive attitude but I didn’t really see what other kind of attitude to have. My doctor was so positive and just looked at treatment as something I had to go through to get better. Who cared if I lost my hair? It was only temporary. Because my kids were so small I had to focus on them and couldn’t wallow in self pity. I didn’t have time.
One big thing I learned is how important it is to say only positive statements. People would say things to me like they were sad I might not be around or they knew someone who died from Hodgkin’s. That didn’t help me at all! I hated the look on some people’s faces when they found out I had cancer. It worried me. I chose to just listen to my doctor who was optimistic and knew the latest in medicine. I now am very careful to only tell positive and success stories to people that are going through something. You don’t realize how people can internalize little comments and how it can affect them. My husband was my rock-he shielded me from negative people and statements. My cancer strengthened our already strong marriage. We have now been married almost 27 years. He is my best friend. Ok, I digress!
I kept wondering what I was supposed to do with this experience. During my treatment one of my good friends came down with breast cancer. She had commented earlier she didn’t know how I was getting by and then weeks later she had a battle to face. I saw myself becoming an encourager. We started to have fun with it; me with my wig and she with her prosthesis (she too had just had a baby 2 weeks prior to her diagnosis and couldn’t have reconstruction for several months so had to have a prosthesis). Shortly after several other friends came down with cancer and I was there for them and hopefully an example. Happily, everyone is fine today.
The years went by raising little boys and for a while I just wanted to repress my experience and move on. I didn’t want my cancer to define me. I really wanted to forget it. I just wanted to get on with life. Over 10 years later, Happy First was born (more on how we got started later!).
While in the planning stages of Happy First, my dad was diagnosed with Multiple Myeloma. This is also in the Leukemia and Lymphoma family. This was confirmation to me that this was what I should be doing. Happy First gives a percentage of profits to leukemia and lymphoma research.  I want to give back. I wouldn’t be here today if it wasn’t for cancer research. We launched Happy First in May of 2007. My dad passed away in September of 2007.
Now you know why I am so “happy to be here” (and that is the name of my latest tee, more on that later!) and why I celebrate each month by saying “happy first!”. I now know that I went through Hodgkin’s Lymphoma to encourage and inspire others. I am grateful I went through it, but hope to never go through that again! It is still scary going for checkups, it brings it all back.
Wow, it feels weird writing all of this down to tell you. I haven’t thought of the details in a long time.

Finding An Anchor

Joyce Turner has a to-do list few could match. When she's not completing coursework for her master's degree in public administration, the 50-year-old Florida resident is busy setting up a new home business venture, helping care for her aging parents, tending to her garden, or enjoying the company of her two young grandchildren.
The drive that keeps her schedule full these days is the same force that helped her face cancer more than 13 years ago and come out a winner. Turner was just 36 and a single mother of two young children when she found out she had large cell lymphoma, with a mass in her chest cavity, in January, 1990. "I felt like, 'I have to make my treatment work. I have people here that need me. My children need me and I want to be here for them,'" she recalls.

She had known "something wasn't right" for months before her diagnosis. Swallowing had become difficult; she experienced a sensation of fullness in her chest; she started having some night sweats. But learning she had cancer was a shock. "When I was first told, I was just bewildered. I didn't know what to do, where to go." Not content to be treated at the small hospital where she was diagnosed, Turner asked to be referred to the University of Florida's Shands Cancer Center in Gainesville, a large medical center where she was able to enter into a protocol for lymphoma patients. Her doctor's expertise and confidence were encouraging. "He said from the get-go, 'We're going for a cure because I see a very good chance for one.' I really felt like he had my best interests at heart," Turner says. Three weeks after her diagnosis, Turner began a series of eight chemotherapy treatments with a regimen of four drugs known as CHOP, followed by 21 radiation treatments to her upper chest and neck.

Turner relied heavily on her family and church for support during her treatment and recovery. "I knew that I had to have some type of anchor to help me through this," she says. "I just found comfort in my God and that's what helped me; that was my anchor." Her mother accompanied her to every treatment, and taped Bible studies and church sermons for her, which she played during chemotherapy. Her pastor also suggested she read Psalm 27. Turner took his advice and says she felt "strengthened" by the verse. There were some difficult periods. She often felt too weak to walk on the days she received chemotherapy. The radiation burned her throat so badly she couldn't eat, and caused her to drool "like a teething baby." "To me, the radiation was worse than the chemotherapy," she said. Overall, though, Turner says she was "never really infirm" during her treatment. "I had just made up my mind that I wasn't going to be sick," she says. She strove to keep her life as normal as possible for the sake of her children, who were just 12 and 8 at the time. Even the late effects from the chemotherapy haven't slowed her down much. Her doctors had warned her that the powerful drug Adriamycin, part of the CHOP treatment, might damage her heart, and in 1999, Turner was diagnosed with congestive heart failure. So far she's never had to be hospitalized for the condition; she controls it with medication and a healthy lifestyle. "If I get plenty of rest, take my vitamins, eat well, I'm fine."

And dealing with cancer, she says, helped her cope when her mother became seriously ill a few years later. "By going through (my illness) I was more grounded," she says. "If I hadn't had mine, it would have thrown me so much." She has used that perspective to reassure friends and colleagues dealing with serious health problems of their own. "I say to everyone, just live every day. You don't have to go like a motor scooter through it, but live every day and be thankful and blessed that you have it. Just keep going.

LAUGH, SMILE, CRY OR INFORM: JOIN THE MOVEMENT AND SHARE YOUR STORY, IT COULD BE SOMEONE ELSE'S HOPE

Hey Survivor's and Fighters,

             I understand how it feels and what you are going through, but during my struggle I understood the value of support, I feel that I would not be where I am today without it, Being a Cancer Survivor over these past years has been an eye opener into my life, From the day I found out I had that huge tumor growing inside of me, I knew I couldn't give up not on my life and nor my future.  I founded this Non-profit Organization The Cancer Survivor's Club in hopes to help others understand the value of support and use their success stories to inform and give hope to others in this struggle.  This is more than just a Blog its a Movement, A Movement for The Cure and a Movement for Survival. Don't Just Read, Inform, and share your story. You never know it, you might just be someone else's HOPE!

Sincerely,
Ais York

“When life hands you lemons, make lemonade”

Alex’s Lemonade Stand Foundation (ALSF) shares the vision of our founder and creator, Alexandra “Alex” Scott—a cure for all children with cancer.

When Alex, who was diagnosed with childhood cancer just before her first birthday, was four, she told her parents she wanted to set up a front-yard lemonade stand. Her plan: to give the money to doctors to help them find a cure. Her first “Alex’s Lemonade Stand”, held with the help of her older brother Patrick, raised an astonishing $2,000 in one day. While bravely fighting her own cancer, Alex continued to set up lemonade stands every year. As news spread of the remarkable girl so dedicated to helping other sick children, people everywhere were inspired to start their own lemonade stands—donating the proceeds to her cause.

In 2004 when Alex passed away at the age of eight—her stand and inspiration had raised more than $1 million towards finding a cure for the disease that took her life. Alex’s Lemonade Stand Foundation was started by her parents in 2005 to continue the work that Alex began. Our mission is simple: to raise money for and awareness of childhood cancer causes—especially research into new treatments and cures—and to encourage and empower others, especially children, to get involved and make a difference for children with cancer.

Since Alex set up her first lemonade stand in 2000—truly exemplifying the saying “When life hands you lemons, make lemonade”—we have raised more than $50 million. That money has helped to:

• Fund more than 200 cutting-edge research projects

• Create a travel program to help support families of children receiving treatment

• Develop resources to help people everywhere affected by childhood cancer

Alex’s Lemonade Stand Foundation is the living embodiment of Alex’s spirit of determination and hope. Like Alex, we believe that every person can make a difference. Together, we can bring about a cure. Please join us in “making lemonade” today!


http://www.alexslemonade.org

At Face Value My Struggle With A Disfiguring Cancer

I was a junior at the University of California at Berkeley. At the age of twenty, my life had been smooth sailing, seldom interspersed with adversity or difficulty. I was handsome, smart and athletic. I was confident and not concerned much with my appearance. But over a period of a couple of weeks, a few people asked me what was wrong with my nose, a nose I had always remembered to be pretty normal. I hadn't noticed myself, but upon looking at it closely in the mirror, I assumed the bump pushing against my right nostril would just go away. When it didn't, I made an appointment with a doctor who suggested a biopsy.

The pathology report concluded I had a rare fibrosarcoma. Since the biopsy removed the bulk of the tumor, my doctor indicated that outside of having a CT Scan to insure the tumor had been removed, a follow-up procedure would be necessary to excise any remaining tumor cells that may have been present. Given what he said, I somehow felt that even the ensuing surgery would be minor. My assessment of the situation was that I had little to worry about. The follow-up procedure did prove to be minor. With only a few sutures along the wing of my nose, and a few more inside my pallet, I returned to classes looking like I had been in a fight with someone, not something.

But six months later, I discovered a new lump rising from the lower portion of my right nostril. Then I began to feel tingling sensations in my cheek. Doctor visits, a CT Scan and evaluation by the U.C.S.F. Tumor Board confirmed that my previously unthreatening tumor had procreated itself seemingly overnight into a horrific, life-threatening and potentially disfiguring malignancy. My doctor informed me that I could lose half my nose, half my upper lip and possibly my right eye, but that saving my life was his main concern. I suppose I was too young to contemplate dying, but the realization that I could be disfigured was devastating.

I awoke from my first major surgery (third procedure) with a full-thickness skin graft attached to my face from the skin and fat of my shoulder and chest. Half my nose and upper lip was gone, the muscle and bone from my right cheek had been excised, the shelf of my eye had been removed and six teeth and part of my hard pallet had been resected. My doctor's only promise to me was that he would make me "streetable" before I left the hospital. Initially I did not understand that saying I would be "streetable" was a nice way of preparing me for a life of disfigurement.

When I was released from the hospital, I noticed adults staring at me and children pointing and sometimes laughing at me. I realized that my hospital room had protected and comforted me. Outside of it, I was vulnerable and exposed. How was I going to face the world? I cared what other people thought of me. I relished the admiring looks I received as the "old Terry" and was petrified that someone would even take notice of me as the "new Terry".

Over the next few months, I encountered many old friends and acquaintances. Their sometimes inadvertently negative reactions and comments left an indelible mark on me. On top of what people were saying, the radiation had begun to shrink the tissue on my face, to me magnifying my deformity. My self-esteem was sinking lower than I thought possible.

Five years later and after twenty some attempts to reconstruct my face, I was still coping with the insecurity. When I went for my last procedure I met a wonderful woman who helped me to see that the bulk of my problem was not my physical appearance, but my emotional insecurity. I realized that surgery would not fix the mental and emotional scars that had become far more disfiguring elements of my person than the appearance of my face ever had.

Thanks to that wonderful person, the woman who helped me to open my eyes to what my real problems were, I began to examine myself from the inside out. The support of family and friends, prayer and the realization that my scars were deeper on the inside than the outside all combined to strengthen my spirit and belief in self. I became a volunteer at the Wellness Community (San Francisco/East Bay Chapter), a cancer support organization that offers hope and support for patients and their families.

Helping others seemed to be the greatest form of therapy. I began to feel better about myself as I realized that I could bring tremendous inspiration and hope to those coping with cancer. Over time, the pain I felt from being an outcast subsided. Perhaps I will always be an outcast, but it's not pain I feel any more. In a strange way, I am thankful for who I am today - much stronger and wiser than I was before cancer.

We all struggle with insecurities in one form or another. For me it took something extremely devastating - something that would take me to the deepest depths of self evaluation - to realize that battle scars are what makes someone interesting; battle scars are what makes someone wise; battle scars are what makes you realize how precious and valuable life really is; battle scars are what prepare you for the inevitable adversity that lies ahead.

Fifteen years later, I remain free of cancer. I've accomplished a lot personally and professionally. Married to an extraordinary and supportive woman, I am truly content with myself. I don't cower around others or hold my head down any more. In fact, I don't even think to mention what happened to myself when I meet people. Perhaps they wonder or perhaps they don't. They sure don't seem as curious as they were. I guess that tells you something.

My cancer and disfigurement have taught me one of life's most important lessons - it is our internal spirit and not our external appearance that makes up the human soul.

Yes! I Survived Cancer And I'm Here To Tell You How