radiation

Non-Hodgkin’s Lymphoma Survivor & Author Jen Singer

September 30, 2013 By Debbie 3 Comments

Jen Singer & Boys

This picture was taken this past April in Cancun, Nick is on the left, now 16 and Chris in on the right, almost 15.

Jen Singer and I met somehow years ago online. We became friends and corresponded back and forth. I love her sites, MommaSaid.net, Parenting with Cancer, and her facebook page and her fun outlook on life and parenting. She has done some speaking and is an inspiration to many.

Happy First Survivor Story

Jen Singer

written 9/23/13

I still know my oncologist’s phone number by heart, even though it’s been nearly six years since I went into remission. I know this, because I just called it to make my annual check-up appointment – the first appointment in all those years that I’m not worried that the cancer may have returned.
Well, not that worried.
Six summers ago, I was diagnosed with Stage III Aggressive B Cell non-Hodgkin’s lymphoma. I had a tumor the size of a softball inside my left lung, pressing against my esophagus and my heart.
Speaking of my heart, I also had two boys in elementary school, and I desperately wanted to see them grow up. According to my oncologist, however, I was about two months from death – a fact he didn’t reveal, nor did I ask about – until I was safely two years in remission. And yet, deep down, I knew it.
I spent much of June 2007 in the hospital for a five-day infusion that turned into 10 because of complications, plus another few days before that just trying to get an accurate diagnosis. (The doctor had told me that I had the “good cancer,” Hodgkin’s lymphoma, when really, I had non-Hodgkin’s. And, oh yeah, there is no such thing as a “good cancer.” I switched hospitals shortly thereafter.)
In all, I had six rounds of chemo – the kind that makes your hair fall out and comes with the possible future “complication” of leukemia – and five weeks of radiation treatments. I coached soccer (well, I sat in a chair and tried to yell), I was class mom, and I slept on the couch a lot while trying to ignore the house-wide construction going on around me that we had started before my diagnosis.
I tried to be the mom that I had been before cancer, but that was nearly impossible when it took all my energy just to get out of my car and walk to the edge of the lake where my kids had a swim meet. So I did the best I could and relied on everyone around me to fill in. And they did, thank God.
When I finally achieved remission, I waited for “normal” to return, but it never did. Not the normal I knew before cancer, anyhow. In the first year, there were PET scans every quarter and then in the second, every four months. After 14 PET scans, my oncologist finally cut me loose from that anything-but-normal ritual, relying instead on blood tests and “how you feel.”
And I feel fine. Good, even. Normal, but a new normal, in which cancer isn’t so much in my rearview mirror as it is potentially at any exit along the way. Only now I zoom past those exits without (much) worry, relying on annual blood tests and how I feel to confirm what I know deep down: I will see my kids grow up.
My boys are now both in high school, the final lap of the under-your-roof parenting years. They are stronger and wiser for what they went through, of this I am sure. And we are closer, too, because of it all.
Next week, I will have my six-year check-up, but I am not worried. I will zoom past this exit with the memories of all we’ve been through, looking forward to watching my sons become men. And yet, I will still remember my oncologist’s phone number.
Just in case.

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Above picture from 2008, Jen was 6 months in remission. Nick on the left at age 11, Chris on the right age 9 1/2.

Jen is both an author and a blogger. Her sites are MommaSaid.net. and Parenting with Cancer. (In fact I guest blogged for her back in 2011, check out the post-Debbie Vinyard wants you to be Happy First). It is the back fence of the Internet where moms go for laughs and a pat on the back. Created by Jen Singer, author of the Stop Second-Guessing Yourself parenting series, a Mom’s Choice Award gold winner. Also check out her facebook page MommaSaid.

Thanks so much for sharing, Jen!

Coping with Cancer from a Caregiver’s Perspective

January 18, 2013 By Debbie 4 Comments

Mesothelioma

My vision for Happy First is to be a place where people can come and connect with each other and be inspired. Through one of my blog posts in particular- My Hodgkin’s Lymphoma Survivor Story I have seen people encourage and help one another in going through cancer. I am so thrilled that Cameron and Heather Von St. James found Happy First and asked to share their story with you all. The perspective from a caregiver is often overlooked. Here is their story; I know it will touch and encourage others and also create awareness.

Being a Cancer Caregiver is Hard: How I Coped With My Wife’s Diagnosis

My wife has said more than once that she has no idea what I went through when she was diagnosed with mesothelioma. Despite talking about it once, it’s a difficult thing to understand when you experience a struggle like this from different perspectives. Neither one of us had any idea that three months after our daughter was born we would be dealing with cancer. We had no idea that our joy would end and anger and confusion and fear would replace it. I watched tears run down Heather’s cheeks when her doctor told her she had cancer. All I could do was wonder how we would get through this.   The anger is something I remember vividly. I used a lot of profanity for a while. I finally got my act together and made sure I was strong for my wife. I needed to be her rock. I made it happen, but it wasn’t easy. I had a long list of things to do that I didn’t think I could handle. Aside from the regular things I had to do such as work and caring for my wife and daughter, I had travel arrangements to make, treatment decisions, and doctor’s appointments to deal with. It didn’t take long before I started accepting all the generous offers of help that our friends and family approached me with. We were so very lucky to have that help and support during this difficult time. It helped me to prioritize our lives. I was still overwhelmed, but much less so.   The most difficult time in all of this was immediately following Heather’s surgery in Boston. She needed time to recover before she began her next phase of mesothelioma treatment: chemotherapy and radiation. Fortunately, her parents were already watching Lily for us in South Dakota, so Heather hopped on a flight and spent the next two months with them recovering. Because I had to stay behind to work, I was only able to see my family once in those two months. I missed Heather and Lily so much.

I visited them one weekend, and spent 11 hours driving each way. I left on Friday after work, drove through a snowstorm, and did it all over again on Sunday so that I didn’t miss any work. It was a long, grueling trip from only a few precious hours of time with them, but it was worth it to see my family.   This was such a difficult time for me, but I don’t regret the decision to stay home and work. I had to help our family the best way that I could. Since we were so fortunate to have her parents help with her recovery and with Lily, we were able to make this decision. It was difficult, but it was necessary. It was the best decision for our family at the time, which is the only reason I don’t regret it. That was six years ago. Heather is healthy and happy now, and I am wiser from all that I learned throughout her cancer experience. I learned that I have to accept help to get things done. I learned that we were lucky to have all that we did in that department. I hope that my experience can help even one person with their own experience with cancer.

A little about Cameron-

“Cameron is husband to Heather Von St. James, survivor advocate for the Mesothelioma Cancer Alliance, and father to Lily Rose. He, along with Heather and young Lily, had their worlds turned upside down when Heather was diagnosed with malignant pleural mesothelioma, just 3 1/2 months after the birth of his only child. When faced with the very real possibility of raising Lily on his own, he fought alongside Heather in her battle with mesothelioma. It was his determination and refusal to compromise on doctors or treatments that led them to Boston to receive radical surgery from esteemed mesothelioma surgeon, David Sugarbaker. Heather continues to thrive 6 years later. Von St. James family

Through out the next few years, while being a caregiver to Heather and dad to Lily, Cameron returned to school full time to finish his degree. He worked full time, went to school full time and graduated with high honors at the top of his class in June of 2010 with a Bachelors of Science in Information Technology. He was soon offered a position at US Bank as Network Analyst and continues to pursue his career.

Like Heather, Cameron is passionate about bringing awareness to mesothelioma and the dangers of asbestos exposure. It is his hope that sharing his story will help others those battling cancer and their caregivers who provide them care and guidance in their journey.”

If you would like to connect with Heather, check out her facebook page.

My Hodgkin’s Lymphoma Survivor Story

April 1, 2011 By Debbie 139 Comments

The Diagnosis of Hodgkin’s Lymphoma

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.

Prognosis and treatment of chemotherapy and radiation

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!

Silver Linings

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.

I hope I have helped someone with this story! I would love to see your comments below. If you have an inspiring story, please email me at debbie@happyfirst.com and let me know if you want me to share it.

Have a happy day my friends, and be glad you are here!