The Leukemia & Lymphoma Society Blog

The Leukemia & Lymphoma Society Blog

2 Posts tagged with the first_connection tag

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Christen Reilert was diagnosed with non-Hodgkin lymphoma (NHL) when she was just 27-years-old. She took some time out to answer our questions on what it meant for her to be diagnosed with cancer as a young adult, as well as the fertility issues she faced.

 

LLS: How did you find out that you had NHL?

Christen: I found out I had NHL when I started having trouble taking deep breaths. Every time I took a deep breath it hurt which prompted me to go to my doctor. Twice I was misdiagnosed with walking pneumonia, given antibiotics and sent on my way. Two months later the symptoms returned and I ended up going to the hospital where they did a chest x-ray and found a large mass in my chest. That was the 4th of July in 2002 when I was diagnosed with NHL.

 

LLS: That sounds frustrating. Can you describe how you handled the diagnosis, as well as how it affected your day to day life?

Christen: The news was a total shock, being 27-years-old and a two-year newlywed with my husband, Josh. I was devastated. After the shock, I decided I was going to do whatever it took to survive. At the time, I didn't want to know anything about the cancer, I just wanted to fight it. Every day I went in for my chemo treatments I had a smile on my face and I knew at that moment, I was a survivor. I went through six chemo treatments over an 18-week period and 18 days of radiation. I lost all of my hair on my body, got severe thrush*, became extremely fatigued and was out of work for seven months. Since that dreadful day of diagnosis, I look at every day as a gift. Every day I wake up, I thank God for letting me enjoy another day of life. There is nothing in life that be that bad. In my life, there are no bad hair days, no feeling sorry for myself, just living everyday as it comes.

 

LLS: Do you mind sharing if and how your diagnosis affected your plans to have children?

Christen: Just two months prior to my diagnosis, we had just started trying to have a family. I had always dreamed of becoming a mother and when I was told I had cancer, my dreams were shattered and put on hold. There was no definite answer if I'd ever be able to have children. I sought out professional advice from an infertility specialist in Manhattan. Josh and I traveled there by car and she told me I could freeze embryos but I'd have to wait until my next cycle when I ovulated again. Unfortunately my tumor was so aggressive I couldn't postpone chemotherapy and I was not able to freeze any embryos to preserve my fertility. Needless to say, I cried all the way home.

 

LLS: Was there anything you could try at that point?

Christen: My chances of becoming a mother were slim. I took a chance and the doctor put me on a birth control pill to suppress my period for the duration of chemo (which was 18 weeks as well as 18 days of radiation) in hopes the chemo would bypass my reproductive system. The chemo I endured was very aggressive and harsh, and basically prayer and hope was all that was going to ensure any sort of fertility.

 

I was very ecstatic when I found out I was pregnant in April of 2008. When I took that pregnancy test, I literally did a double take. All the prior tests were always negative and to get a positive result was just shocking. When the doctor confirmed my pregnancy with a blood test I didn't waste any time breaking the news to family and friends!

 

LLS: Congratulations!

Christen: Yes, on December 23rd, 2008, our miracle baby born. Our son, Jaden was born! My motto which I've been saying since I found out I was pregnant has been "CANCER SURVIVOR'S HAVE MIRACLES TOO". We are so blessed to have him. What more could a cancer survivor ask for?

 

LLS: How is your health now?

Christen: I am currently in remission and have been cancer free for the last seven years now.

 

LLS: We hear that you’re actively involved with The Leukemia & Lymphoma Society (LLS).

Christen: After I completed radiation in early 2003, I ended up calling LLS to become involved in fundraising because felt like I owed the world a big fat thanks! For everyone who helped me beat this disease, I felt like I had to give something back. So in 2003 I started doing the Light The Night Walk and formed my own team, Christy's "Cure"ators. I have been the team captain for the last six years and an honored patient hero for the last five years. Everyone who walks with Light The Night Walk has been following my story. Last year at Citibank Park I was speaking (as I do every year) and was able to announce my pregnancy. I unveiled my seven month pregnant belly in front of hundreds of people with a zip of my jacket and the crowd roared for me. It was so exhilarating. This year, I get to introduce my son Jaden to everyone at Citibank Park, I can't wait.

 

In addition to being a team captain and honored patient hero I also volunteer my time anywhere I can. I am also a First Connection Volunteer for those who are diagnosed with similar diagnosis and who are around my age - I am like a mentor to them.

 

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* ”Some people may develop a white, shiny coating or white patches on their tongue, inside of the cheeks or on the floor of the mouth. This symptom may indicate a yeast infection, also called ‘thrush’ or ‘oral candidiasis.’” From the free booklet, Understanding Drug Therapy and Managing Side Effects.

 

If you’re a young adult who has been diagnosed with blood cancer, you can give our Information Resource Center a call at (800) 955-4572 and someone will be able to help you or point you in the right direction.

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I’ve been spending a little time today reading the Patient Services Discussion Boards, specifically the Newly Diagnosed board. It’s heartbreaking to read some of these posts. A lot of these new cancer patients and their caregivers are scared, feel helpless, and alone. Participating in our online community allows them to find the immediate emotional support they need.

 

These people are also looking for resources – many of which The Leukemia & Lymphoma Society (LLS) provides.

 

In just got the dx dkvpv looks for questions to ask her doctor:

 

“…my Dr. said we would sit down and talk. I'm very scared and numb. What should I expect, what should I ask?”

 

The LLS website has a page called, What to Ask After Diagnosis. It has a variety of printable question guides which can be of help during different conversations a cancer patient may have while sitting down with their oncologist.

 

In NH folicular lymphoma Me2RN looks for peer support:

 

“At times I feel set apart from others and would like to just talk about it with people who feel like I do or have the same experience. I have a great support group around me but they do not have cancer.”

 

LLS offers First Connection, which is a peer-to-peer support program. You can sign up to receive a call from a trained volunteer who has been through it, just like you. Both patients and caregivers can utilize this helpful program.

 

In New dx of CML-scared to death!! LauraB523 wants to know how to cope:

 

“So, does anyone have any advice or coping skills to pass along? I have some good days but also some bad. Just a lot to deal with right now!!”

 

Along with many other free materials, LLS offers the Coping support booklet (.pdf) which can either be downloaded or received by mail. It’s geared towards people living with leukemia, lymphoma and myeloma.

 

There are many other online resources available to people who have been newly diagnosed with one of the blood cancers. It’s not easy to find out that you or a loved one has cancer, but it can be easy to find the help and support you need on our website. Can’t find what you’re looking for? Give us a call or send us an email.

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