Fellow Fighter Lynn

Congratulations to Meaghan for creating I Kicked Cancer’s Ass! I don’t usually use that word in public, but then I’ve been quiet for a long time. I kicked 3 types of cancer in 1987 and have been cancer free since then. Woohoo - that’s 23 great years of appreciating my life like I never did before cancer.

I was preparing myself to die with breast, colon, & skin cancer in 1987, and I’m so thankful to the people around me who helped me to change my mind. I did a lot of work myself, but my support team helped to make it easy for me.

If you have cancer and you want to kick its ass – get a support team to help you as it’s very tough to do this alone. If you know someone with cancer who wants to kick its ass, then whatever support you give them will make a big difference in how they’re able to live their life.

I was fortunate to have a wonderful health care team all through surgery and chemotherapy. My doctors were helpful and they inspired me to do everything I could to complement conventional medicine and help myself get well.

The Cancer Agency ran a support group where I learned to do meditation, visualization, guided imagery, deep breathing, and deep relaxation. My surgeon recommended a psychiatrist to help me deal with unfinished business, and a Cognitive Behavioral Therapy course to help me deal with depression.

With love and support from family and friends, I learned how to manage my stress and change my diet and exercise pattern. Reading books, listening to tapes, and attending workshops taught me many other coping skills and bit by bit I built my road to health and wellness.

I’ve been an active member of the cancer community for many years now as a survivor, health care worker, and as a volunteer. It’s with sadness that I’ve seen many people die of cancer. If we don’t know cancer is there and we let it grow too long, it just takes over like an aggressive weed. When cancer is advanced it takes over our bodies and takes away our energy; with more cancer and less energy we have less chance of kicking it out.

I think the best defense is an offense; we need to be aware of our bodies and check out signs and symptoms when they begin. This way I hope more people will give cancer a swift kick, and take control of it before it controls them. Cancer is like a bully! When we let cancer have its way, it takes over our lives and even takes our lives for no good reason. When we stand up to cancer we at least have a chance of kicking it out of mind and out of sight. By focusing on being as well as we can possibly be, we improve our quality of life and possibly our quantity of life.

One day at a time, I give thanks for every day.

You can visit Lynn's blog to read more about her story, prevention, early detection and recovery. Please stop by and thank her for sharing her amazing story!

I Hate Tumors Guest Post

Recently I have become inspired to start posting regularly.  This inspiration didn't just come to me in a dream. Last week I was contacted by Tamika from Tamika and Friends asking if I would like to speak in DC on The Hill about cervical cancer. Being a survivor and somewhat of an advocate I jumped at this opportunity.  I started thinking about my personal battle with cancer, the chemo, radiation, nurses, doctors....all of it.  This was a painful journey for me and that brought on tears of joy and sadness. It also got me started thinking about someone who helped me through some of my most darkest days, Heather.

I never met Heather, in the sense that most people consider "meeting". Heather had passed away from cervical cancer at the young age of 28 in 2005. I had never met her and we shared no common friends. In fact I had no knowledge of Heather while she was alive. But, Heather helped me through my battle each day, she inspired me, comforted me and encouraged me.  Our battles were so similar, same age, stage, treatments but our outcomes were very different.

While researching cervical cancer one of my friends came across this article and that is how I met Heather.  I remember reading it for the first time, it was a pivotal moment in my life. I've read this article hundreds of times, like visiting an old friend.  For the past three years I have attempted to find Heathers friend Sara and her sister Donna with no luck.  Last week this all changed. After agreeing to speak with Tamika and Friends I found out that Tamika knew Donna and Sara.  Tamika message them both and then Donna friended me on Facebook.

Donna and I spoke on the phone and have texted back and forth since our call. Its so amazing for me to have this opportunity and it has inspired me to continue sharing my story.  This Tuesday Donna will be a guest on my Spirit Jump Podcast show and I hope you all get a chance to tune in.  The show will be 8-9pm EST and can be viewed at www.wafs.tv.  

Please take a moment to read this amazing article about Fellow Fighter Heather. She is an inspiration and with your help we can keep her story and spirit alive.

 

 

 

Fellow Fighter Art

When I had Hodgkin lymphoma in 2002, I promised myself that when I was healthy again, I would do something to make a difference for those suffering from cancers. One thing I have done, starting in 2005, was to raise money for the Leukemia and Lymphoma Society as a marathoner with their Team in Training Program. Having never even run a 5K before cancer, I have completed three marathons and one half-marathon since then, while raising over $40,000 for LLS. I plan on doing another event next year.

Even as a survivor, it doesn’t always come home every second of why I put myself through this. Memories of what it was like to have cancer can fade a bit over time. But then, while in Nashville this past April for the Country Music Half Marathon, I had this brief magical moment that immediately reminded me of why this is so important. It was the kind of instant that makes you want to smile and cry all at the same time. I cannot get this out of my mind, and decided to share it with the world.

I went to take a walk that afternoon from the team’s hotel down to the Cumberland River, get a bit more of the lay of the land in downtown Nashville. I was wearing a Team in Training shirt. As I rounded the corner by the convention center, two young women and two young girls passed me walking the other way. The girls were about six to eight, I would guess. I barely noticed any of them, given that I didn’t see them until I rounded the corner, and as quick as I walk we passed each other in less than 2 seconds. But then I heard one of the women speak to one of the girls: “Look! There’s one of the Leukemia Society people!” I turned my head – they were now about 25 feet behind me – and looked at them. She was talking to one of the little girls, who happened to be bald with just a hint of hair growing back. And in an instant it hit me – “My God! This young girl has leukemia!” I smiled at her and waved, and she gave me a shy, sweet smile back. Then we went on our separate ways.

For a second I thought that I would go back and chat with them, tell them that I am also a survivor and assure her that she will be, too. Then I felt like I might be intruding, and decided to keep on going. But as I walked along, choking back tears for a short time, I thought of her. I thought about her as I sat by the Cumberland River a little later. I thought of her during the Inspiration Dinner the next night, and again during the race the day after that. And at the Victory Party the night after the race. And of course since then, which is why I am writing this now. I know I will wonder about her for a long time. Will she ultimately survive? Will she graduate from high school and college? Fall in love? Get married? Have her own children and maybe grandchildren someday? Maybe do a marathon herself with Team in Training for LLS? Discover a cure for cancer someday or invent something that helps the world?

And I thought “This is why I do this.” Why I get up at 4AM and 4:30AM to run and walk miles alone in the dark before work. Why I give up Saturday mornings when sleeping in and then relaxing with a cup of tea might sometimes be easier. Why I train so long at times that I have to soak in a tub of ice water from the waist down. Why I am willing to run and walk 13.1 miles two days later in the heat, and 26.2 miles three times before. Why blisters and blackened and lost toenails are tolerable. Why I am willing to ask people, many whom I barely know, for donations over and over and over, until now and then one of them will email back and say “Take me off your mailing list.” And it is why my teammates, thousands of them at any given time around North America, 650 of us in Nashville that weekend alone, do all of these things, too.

It is so this young girl, and others like her, can have a future. Seven years ago, I received the gift of life when I survived a form of blood cancer that was treatable only because of much medical research and clinical trials. So to do what I can to help others have this same chance now and in the future feels like the least I can do.

Whoever you are, young Nashville girl with leukemia, I hope you survive. I hope you have a long, productive, healthy and happy life! And I am glad that our lives crossed for a brief, bittersweet instant that day.

Visit Art's Blog by Clicking Here

Fellow Fighter Ezra

This blog post was written by Ezra's mom. This little boy is has been a part of our Spirit Jump charity and we have all fallen in love with him. Please take a moment to read his story and put him in your prayers. Also, if you would like a button for your blog you can get on on his moms site: MANIC MOTHER

May 22nd, 2009 will forever be marked the day the world fell out from underneath us. That is the day that I heard cancer and baby used in the same sentence.
Let me back up though first for a moment. I am sure you are asking yourself how we found ourselves where we are.
Over the weekend Ezra had got bit by a spider and had a handful of bites on him, we were concerned they were venomous spider bites. He was also limping in the leg that the bites were. We took him in to see the Dr.s and they basically said just to monitor him. They ordered an x-ray for a precaution because of the limp.
Its those x-ray results that changed everything.
The radiologist noticed abnormal markings in his bones, which can be indicative of leukemia. They of course said it was just a precaution but we needed to see an oncology Dr. to follow up.
The oncology Dr. looked him over and did not see any of the typical tell tale signs of Leukemia. He told us not to worry and had Ezra’s blood drawn to rule Leukemia out.
Later that night we got a phone call and were told some of the lab results looked abnormal, and were told to bring him into ER. They did more labs there, and it was by far the worst night of my life ever.
Results came in, and although they were still waiting on one more result to officially diagnose Ezra, they told us then that they thought he had Leukemia.
We sat there in our curtain enclosed area in the ER weeping, holding our sweet little boy. So many questions swirling in our heads. Why him? Am I to blame? Could it have been prevented? Is he going to die? What next?
The next morning an oncology Dr. came in and gave us the official news and told us Ezra had Acute Lymphoblastic Leukemia (ALL). Some of his first words to us were “ He is going to be fine, he is going to go on to graduate college, be a father, and a grandfather.” In my darker hours, I find myself revisiting those words often. I cherish those words. I need those words. Those words keep me afloat, they give me hope, peace, and reason.
It still doesn’t make any sense to me, how did my perfectly healthy baby go from a limp to Leukemia? Ezra did not present any of the typical symptoms of Leukemia, besides being pale. But if you have seen me or my other son, the paleness is no cause for alarm.
The reason Ezra was not yet exhibiting symptoms of ALL was because it was still really early. Typically when kids are diagnosed with ALL they have any where from 60-90% cancer cells (or blasts as they call them) present . The disease does not usually present itself till 25% blasts are found. Ezra’s were at 15% at diagnosis.
We caught his cancer on a complete fluke, and we caught it really early. Sometimes fate has a beautiful way of interceding, thank you Mr. Spider. So Ezra spent his 2nd birthday in the hospital receiving chemo.

His bone marrow was tested a week into the chemo to see how he was responding. They only found 1-2% cancer blasts left. This labels Ezra as a rapid early responder, which is highly favorable. He will be tested again at day 28, were they expect to find his cancer has gone into remission.

Ezra will receive three years of chemotherapy treatment. Most children recover completely from this cancer, and go on to live a normal cancer free life.

Prior to Ezra’s diagnosis my husband and I always talked about how there was something special to Ezra. There is a light in Ezra , that not every child encompasses. His light is infectious and can put a person at ease, make them laugh, or make them cry. He is a sweet old soul, who is knowledgeable beyond his years. He is a fighter.

He will make it through all of this just fine. He has been braver than I can ever imagine myself being.

He is my hero.

Fellow Fighter Kairol Rosenthal

Life Beyond Treatment

By Kairol Rosenthal

I was diagnosed with cancer at 27. After treatment, I ditched my hospital gown and hit the road. Traveling from the Big Apple to the Bible Belt, I recorded one-on-one conversations with 25 young adult cancer survivors who confessed to me experiences they had never told anyone else.

I was surprised by how many patients said that the hardest part of their cancer experience was life after treatment. Here’s a snippet of my conversation with Geoff Luttrell, a twenty-something survivor interviewed in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

“When you have cancer and you wake up every morning, man, you know what’s happening: chemo, scans, IVs, the whole protocol. Everything else just falls away. There’s no confusion. Life was perfectly clear on chemo. A lot of people recovering from cancer talk about trying to live life like there’s no tomorrow, but you have to work, you have to go grocery shopping, you can’t just walk around 24/7 thinking, I have to make the best of it because I could die in the next five minutes. It’s not realistic.”

Like Geoff, I wanted to be realistic about how to deal with the directionless fray my life had become after treatment. Through my own trial and error, and while talking to other patients for my book Everything Changes, I learned some lessons that made the transition back into daily life just it a bit easier.

After treatment, be kind to yourself. Take it slowly. You don’t have to dive back into life where you left off. In fact you can’t, because life has moved ahead since you were last in it. Step slowly into your life, taking time to learn about what you want from other people and from yourself.

The entire world will want to know how you’re doing. Create a standard yet honest reply – an elevator line, that will educate them about what you are facing, such as, “I’m glad that treatment is over, but it’s pretty common to feel fatigue for a while, so I’m still recovering.”

When I traveled to Alabama, I met Tracy, a 37-year-old breast cancer patient who said, “Some people think that after an experience like cancer, if you are not smiling and doing cartwheels every day, then you’re just sitting around and feeling sorry for yourself. I am grateful to be alive, but I have good days and bad days just like I did before cancer. I also believe you can’t help yourself if you deny that you have suffered.”

She’s right. Life after treatment is hard. Maybe you’re dealing with medical bills, adjusting to a missing a body part, or making sense of your work, love, or family life. Perhaps fear, anger, or sadness about your diagnosis or recurrence are smacking you in the face. Don’t pretend that everything is fine if it is not. Being real about how you feel helps relieve tension. Don’t worry - you won’t get stuck here forever. I’m living proof of this.

If you have gone through treatment, what was life like afterwards? What was the biggest challenge you faced and how did you deal with it? Are you surprised that so many people said life after treatment was the hardest part of cancer?

For candid stories, practical tips, and expert advice on 20 and 30-something cancer, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s. Visit my blog.

Fellow Fighter Kimberly Doyle-Eberhard

My Awakening – Kimberly Doyle-Eberhard



In July of 1998 I had my first daughter, Faith. I was a single mom but very determined that she and I were going to have the best of everything. I would work hard to give her everything I never got as a child. After her birth, I was well on my way until I hit a big, brick wall.

At my 6 week post partum visit the OB/Gyn informed me that my thyroid felt enlarged and referred me to a Endocrinologist. Rather than hesitate, I made an appointment quickly. My first appointment was the regular, blood work, ultrasound, etc. The physician told me that there were multiple goiters and he wanted to monitor my TSH level and do a needle biopsy. A few weeks went by and I went in for the biopsy. It felt like a hundred years waiting on the results. Good news, it was negative. So, the plan was to continue monitoring my TSH and do ultrasounds every six months.

We continued that plan until 2002. Late 2002 I had my normal follow up. I told the physician that it was starting to feel like I had something caught in my throat. We knew the largest goiter (golf ball size) had been growing, very slowly. So, we made the decision to go in and remove the entire thyroid. We scheduled surgery and in December 2002 I had my entire thyroid removed. I went in for my regular post-op visit on December 17, 2002 and my life was forever changed. My physician walked into the room as white as a ghost. Here, on my 29th birthday, he had to tell me that the pathology came back showing cancer. I sat in complete shock almost thinking he was joking. I kept waiting for him to say “just kidding”. Instead, he took his time explaining what our course of action was going to be. I was sitting in this room all alone thinking about my daughter. It felt like everything was closing in and I was on the verge of collapse. Then, something changed, my fight instinct took over and I decided this was not going to get the best of me. I had a daughter to raise and I was going to be around for her.

So, we scheduled internal radiation in January of 2003. I had to go off of my medications and begin a low iodine diet. Radiation for the thyroid is very different than any other. You take a radioactive pill as an in-patient. This pill make you, the patient, radioactive. You are put in a room that looks like quarantine and the nurses and doctors are only allowed limited contact. I was in the hospital for 2 days. Upon being released, I was not allowed around my daughter for almost 14 days. It is imperative that the radiation not be passed to pregnant women or children. Being away from my girl was harder than the actual diagnosis and treatment. I had never felt so alone in my life.

The next few years included blood tests every few weeks and Nuclear Thyroid Uptake Scans every six months. Each time, everything looked okay so we stayed on the regular course of treatment. Synthroid 200 mcg.

In March 2007 I had my second daughter, Grace. Throughout my pregnancy we carefully monitored my TSH and I never had to change my dose. We did have to put off my scan for 2006 due to the pregnancy.

In September 2007 I had to see a new doctor because we moved to Colorado. During my first new patient appointment we went through all of my history. I also had new blood work drawn. The bloods work came back showing elevated levels of thyroglubin. The doctor ordered and ultrasound. This was the first ultrasound I had since removing my thyroid. A few days later I received a call that the doctor wanted me to come in and discuss the results. At that appointment I was told that there was a mass in my throat and it was in an area that can’t be biopsied. We scheduled a Nuclear Thyroid Scan to see if this mass would uptake any radiation. We did the scan, got the results and thankfully there was no uptake. So, the advice of the physician was to get another ultrasound in six months.

We moved to west Virginia in May 2008. I immediately scheduled an appointment with an Endocrinologist. At my first appointment we did an ultrasound. I have to tell you, I was not pleased with this physician at all. He took literally one minute to do the ultrasound and then said, “I’ll see you in a year”. I left his office distressed. If the physicians in Colorado could see this mass, how is it gone? So, I have spent the last year contemplating what to do and hoping that this WV physician is right.

Rather than put my life on the line I have scheduled this years appointment at UVA in Virginia. I am taking all of the films from Colorado and all of my past medical records. I am certain we will do an ultrasound. I just have to pray that there hasn’t been any growth. If there has and I waited a year for this second opinion, I will be devastated. The appointment is June 3rd and I am praying that the mass is merely scar tissue and no a recurrence.

I thought I was living life before the cancer. But, in hind sight I see I wasn’t living, I was just breathing. Although cancer is not a mere medical condition, I feel blessed that it opened my eyes to see the wonder that is in front of me. I live each day now as if it were my last. I love deeper, harder and more unconditional. I appreciate things that I used to disregard. Most importantly, my relationship with my girls is key to my continued growth and strength. Now I just want to be able to open up and share my story so others can see that the “C” word doesn’t have to be a death sentence, it can be an awakening.

Fellow Fighter Meg

At the age of 14 I never thought I'd have to ever face what I would. I was a fun loving teenager playing competitive soccer, had tons of friends and loving life..... December 14th 1998 changed my life forever.

December of 1998 I couldn't get over being sick, I'd gone to the doctor 4 times and they had sent me home with various viruses and infections and of course the medicine to treat these. By the 5th time it was pretty apparent that it wasn't a virus or an infection, or if it was it was something nasty! I finally got in to see a real doctor (not a PA) and after poking at me for about 10 minutes he decided that he needed to take some x-rays to see what was going on in my lungs because they sounded pretty bad. I went back and had a few s-rays taken of my neck and then my chest...... I had no idea what was going on. About 45 minutes passes and the doctor came in and asked my sister (who had taken me to the doctor) to call and get my parents there as fast as possible. At this point I still didn't think anything was too wrong, I've since learned that anytime a doctor asks to have anyone called in it's not a good thing.

My parents showed up about half hour later and the doctor asked them to go into his office with me, he put the x-rays up on the light board and started to point out a bunch of big white things in my neck and chest. He kept saying something about Hodgkin's Disease, I of course had NO idea what the hell this Disease is but I knew it wasn't good. As soon as we left the doctors office I was full of questions to my parents. I knew I was going straight to the hospital for more tests but I still had no idea why. The next 48 hours were a blur, they were full of CT Scans, Gallium Scans, X-Rays, Ultra Sounds and Biopsy's. On December 14th, 1998 I found out that I had Cancer. My first thought was "how the hell do I have cancer? It's what old people get, not teenagers".

Trying to explain to a bunch of junior high kids that I had Cancer but that I'm going to be ok was pretty much impossible. They had to pull me out of school due to my immune system and it just seemed like none of my "friends" even cared. It was like they were too scared of getting it, or too scared of me dieing. That alone was devastating. I wanted them to support me so bad, I wanted them to come visit me at the hospital, I wanted them to call and see if I was ok, but they didn't know how to. On December 18th I had my first Chemo Therapy Session. I had no idea what to expect. All I knew is that I would be getting 4 different drugs and that it would take about 8-10 hours to get all the medicine I needed and I'd probably go bald and get sick. Fun stuff huh? Well they weren't lieing at all. I got to the doctors about 7:30am and got my freshly inserted port accessed and the meds pumping. I knew I hated this already. I didn't want to be there. I wanted to be with my friends more than anything....but I couldn't. At this point my attitude sucked, my parents were trying everything they could to make it positive, my doctor was amazing and cute, so were my nurses but something inside of me just hated everything about it. I thought it had ruined my life forever.

About 2 months into the treatment somehow my attitude changed totally. My mom is a high school teacher and all of these "older, cooler" high school kids had totally adopted me as their best friends and were determined to make me happy. I would come home from Chemo and my bedroom would be full of pictures and posters and stuff hanging from my ceiling. I had a full wall that they created that they named "Meg's happy wall". My parents are beyond amazing, my mom had a theory that every day we had to do something to laugh, she didn't care what it was but we had to! I think still to this day my mom can recite lines from the movie "Dumb and Dumber", for some reason that movie made me laugh so she'd sit and watch it with me over and over.

I walked into my doctors office one day for Chemo, I put out my arm out and said "I'm ready" Something kicked in. I was ready to fight this, I knew it was going to be a bitch but I wanted to get over it and live life! I wanted to be a Survivor, I wasn't going to let this win!

After 8 months of Chemo it was time for Radiation. I had heard it was a breeze compared to Chemo so I wasn't too worried. I went through 2 months going every day of Radiation and then it was the moment of truth! It was time for the final scans and check up. It came back clean!!! My doctor had warned me not to get my hopes up in case I needed more treatments but it was GONE! The thought of only having to go to the doctor once a month was a dream come true! I didn't have to puke my guts out for 4 days every other week, my hair could start growing back that I'd lost. Life was good! We celebrated like crazy!

Chemo was over, life was supposed be getting back to normal...but it wasn't. I attempted to go back to school but had a few problems. My immune system had been so damaged by the Chemo I wasn't able to go anywhere without getting everything everyone around me had. Finally that all got worked out and life was supposed to go on. Anyone that has had cancer knows about the emotions you go through. I felt so lucky, but at the same time I was so upset for having to be so sick..... I didn't know how to feel!

Since then I've been lucky enough to only have a few scares and just have my thyroid fail. I look back at everything that happened and it still amazes me and scares me, it makes me proud to be a survivor but makes me ache for those who have lost family members due to this.

Right before my 10 year anniversary of being cancer free I decided it was time to get a tattoo that would forever remind me of the awesome thing it is to be a survivor.

fellow fighter Briar

BRIAR’S STORY: LIVING LIFE LIT UP!

“Each year over 190,000 women are diagnosed with breast cancer, and the National Cancer Institute reports that 5-10% have a hereditary component!”

Just over six years ago I would have read this information and thought, "how sad for those anonymous far-away people". Who knew that in December 2002 I would be diagnosed with breast cancer? Everything went mercifully but freakishly fast! On December 6 2002, the last night of Chanukah, I showed my doctor a suspicious lump. He bi-opsied it then-and-there feeling it looked suspicious. On Monday December 9, I found out that it was a malignant carcinoma. On Thursday I had a lumpectomy and by the following Monday, I was meeting with my oncologist trying to wrap my brain around this while making significant treatment decisions. I had a case of "Stage 1" ductile invasive carcinoma---breast cancer, which was very aggressive (they say that when you have breast cancer under the age of 50, it is often more aggressive). When I received my diagnosis of cancer I could barely breathe. My mind went to a time, when almost 30 years earlier, my best friend's mother was diagnosed with cancer. She lived for several years before succumbing to her illness, and it was devastating to watch her die bit by bit. I saw myself as my friend's mother. I felt as though I had been handed a death sentence and that a bolt of lightning would flash from the sky in a moment and snatch away my precious life; my life that I was absolutely not ready to give up!

And so I had entered the statistical ranks! While I was in the hospital for my lumpectomy, I was regaled with voluminous bundles of literature from the American Cancer Society and other concerned parties. Among the information was a fact sheet about BRCA. "Hmmm", I thought, "I think I heard about BRCA at a women's health fair a few years ago---and I don't think this is a good thing". It was at that Hadassah Women's Health seminar that I actually was shown how to do a breast self-exam---something I started doing religiously going forward which saved my life! That's how I found my tumor. Among the information on the BRCA Fact Sheet, was a mini questionnaire. It suggested that if you answer "yes" to three or more of the questions you might consider that there is a genetic link to your breast cancer. Do you have a parent, grandparent, or sibling who has had breast OR ovarian cancer? "Well...yes, my maternal grandmother died at a young age of ovarian cancer." Were you under the age of 50 at the time of diagnosis? "Yes, I am 42." Are you of Ashkenazy (Eastern European Jewish) descent? "Yes, I am."

So there I was, a few hours post-lumpectomy, reading this information, and my heart resumes pounding at a new rate of hysteria! Oh my God!! What if I have the crazy mutation that puts me at a 90% risk of having breast cancer in the future and 85% risk of developing ovarian cancer? (The statistics of the gene expressing itself are lower if you have not YET had breast or ovarian cancer---once you have had cancer, you are at higher risk for future occurences of new cancer. Your risk for "recurrence" remains statistically the same as anyone else.) No! This just couldn't be so. I mean, the only person that I knew of in my family's history who had cancer was my mother's mother. I have always been so healthy. I had my children at a young age, and breastfed forever---factors, they say, which lower the risk of having breast cancer! I have always been health conscious about my diet and love fruits and vegetables. No!

So what does anyone in this situation do (besides drink heavily or eat bon-bons?) You go to your family, friends, and physicians and start polling them on their opinions and what they think. Could I have the BRCA mutation? My oncologist, ironically, thought it was highly unlikely and that I shouldn't worry too much about "that". THAT turned out NOT to be good advice! My husband, parents, and gynecologist were of the school that you can't have too much information and it's what you DON'T know that'll kill you. So, my husband and I marched off to the City of Hope and met with a doctor who is a leader in the genetic studies about BRCA! He was warm and caring and spoke to us in terms we could understand and digest. What I came away with was the understanding that if I had this mutation, I would be like a time bomb waiting to go off. If I had the mutation and removed my ovaries, I would have almost 0% chance of having ovarian cancer in the future and it would reduce my chances of having breast cancer to a wopping 60%. I could DEFINITELY LIVE with early menopause! If I also removed my breast tissue, I would reduce my risk of having breast cancer in the future to almost 0%. This was harder to get my mind around, but I WOULD definitely live without my breasts if I could live my life out fully and not have cancer again! I knew I would have to do the blood test, and that if I was positive for the BRCA mutation, I would have a challenging road to walk, but it could give me a chance at living out my full life span. I knew that if I was BRCA positive, I would elect to have a double mastectomy and ooferectomy.

I chose to do the blood test at my gynecologist's office. I paid for the test with cash under an assumed name so that my health insurance would not be in the loop and wouldn't penalize me if I was positive for BRCA. Within a week of my lumpectomy, and before even starting chemo I went in for the blood draw. December 2002 was a LONG month. By New Year's Eve I had built up a healthy veneer of denial, and was still a few weeks away from starting chemotherapy. Life almost seemed normal and my husband and I planned a romantic evening out. At the lovely restaurant, over champagne and hors d'oeuvres, I noticed my husband was a little quiet and out of sorts. As I asked him what was bothering him, a chill ran through my body. I knew. I was positive for BRCA1. I didn't know if I would faint, vomit, or die on the spot. I did none of these. Remarkably I survived!

What next?

We broke the news to our parents. Now there was a bigger question at hand. Where did the mutation come from and what was the risk now to my three children, and what were the implications for my sisters, cousins, etc. I assumed that the mutation came from my mother and, in shock, she stepped up and got tested. She survived the two-week wait to find out that she too was positive for the BRCA mutation but not BRCA1, rather her mutation was BRCA2. Now our family was reeling from the shock that the mutation had lain embedded in my family's genetic coding on both sides. Immediately my father, his brothers, and my sisters got tested. I received the BRCA1 from Dad. My middle sister tested positive for BRCA1 & 2, gifts she inherited from both my parents, and my baby sister was negative, having no mutation.

We got word out to our family near and far. We had cousins reaching out to cousins out to cousins. We started hearing stories of how breast cancer had stricken other branches of our family. I had a distant cousin contact me and thank me for the information. She too found that she was positive for the BRCA mutation, but not from the side of the family that made us related, but from HER other side!

I started chemotherapy in February 2003 and finished in May. Those first few weeks, prior to starting my chemotherapy, were so lonely and frightening. I tried to find information on my own about breast cancer and BRCA mutations by looking through the internet at very late hours of the night, but it seemed that time on the web only plummeted me into deeper and darker despair. I would find all sorts of studies and articles about the likelihood that I would die. I soon realized that I had to back off of the internet and rely on my husband, family, friends, and community to keep my spirits up. I resolved that I would keep my eyes on the present and really appreciate every relationship and every breath I had. Sometimes this worked, sometimes not.

I made it to and through chemotherapy. Chemo was very aggressive for me, and I was very sick for several days after my treatments, and then, just as I was actually feeling “back to normal”....boom....another sickening blast. The hardest part of the chemo and the surgeries that would come, was supporting and processing with my children. My beautiful smart sparkly girl was 13, and my sweet brilliant boys were 11 and 5! My middle boy had the hardest time, and it was when he saw that I was well, 2 years later, that he really expressed how tough and painful the whole thing had been for him and needed some tender---and not-so-tender--- love and care by way of an amazing therapeutic boarding shcool!!! What do you tell children? How do you tell children? And how do you live day to day beyond the descriptions into the reality? One of the best moments we had was explaining how my hair would fall out. My wonderful husband and I explained that just like sometimes anti-biotics give you a tummy ache, the medicine I would be taking would make my hair fall out, but with both, the side-effects were signs that the strong medicines were working. We decided that before the medicine made my hair fall out, we would take matters into our own hands and have a head-shaving ceremony. My daughter was the interviewer, my husband was the shaver and one son took photos while the other videotaped. Over the course of all my treatments and surgeries we became very creative and adept at making lemonade from the lemons---until there just were no more lemons! There was also a lot of hugging, kissing, and lots of snuggling and open conversations.

I read many books of encouragement and support about cancer over this period. I met another mother my age in my pre-kindergarten-age son's class who was also undergoing treatment for cancer, who became my friend and we went to weekly groups at The Wellness Center. There were times I was scared, but I found support and community. My children's schools rallied around me and my family, as did the community at my synagogue. People organized schedules to bring us food, sit with me while I had my treatments, watch my children and even take them for the weekend when I was having chemo. I came to realize how previously, before cancer, I rarely let anyone take care of me. I rarely gave myself time and space for rest and relaxation. I noticed that there were some "perverse benefits" to this "cancer thing", and that I was learning some important life lessons! I was learning to smell flowers and watch clouds float, ever-shifting in the sky. I was appreciating every small moment! I was noticing how loved I was and how much I loved. I learned to look at my children and know that if I died, they would be okay and would always have me in their hearts. I became able to stare death in the face and know that one day death would win---one day, but not yet.

One month after completing chemotherapy I had my ovaries out; a simple procedure done on an outpatient basis. That night I was cooking dinner. A month later I had my double mastectomy and began breast reconstruction, a process that stretched out over a year and a half. During this time, my mother who had had an ooferectomy fifteen years earlier, decided to have her double mastectomy and breast reconstruction. My sister had her ovaries out and was uncertain about the mastectomy. After a year she found what she thought was a benign lump on her breast and decided it was a sign that she should go ahead with her prophylactic bilateral mastectomy. Unfortunately, pathology indicated that her benign lump was not benign after all, and she too, having cancer, had to undergo chemotherapy---three rounds---and all the worry and fatigue and general yuck of cancer!

I have learned that my daughter does not have the BRCA mutation. I must wait a little longer to find out if my boys have it or not. We do not know yet if my sister’s children have it. The BRCA genetic mutation is insidious. It is carried by both men and women. It may or may not express itself---Women affected by BRCA have a higher incidence of breast and ovarian cancer, and possibly colon cancer. Men with BRCA have a heightened incidence of breast and testicular cancer, and may also have a heightened incidence of colon cancer. BRCA is also found to be more prevalent amongst Jews of eastern European descent, although is also found in Scandinavian, Asian, and African American populations. The expression of this mutation may skip a generation or may show up as cancer at a very young age. It has little predictability and certainly no sense of fairness----I guess that's true of all cancer: not predictable and not fair!

It seems that once upon a time ago, Tay Sachs was unheard of---and now all Jewish parents-to-be are tested and they are able to make informed choices about becoming parents. I hope that as we become more educated and aware of BRCA and other genetic connections to cancer, as a community, it will likewise become a practice in the not-distant-future, that testing becomes the standard of care, like Tay-Sachs. We may not be able to counter the effects of this mutation...YET....but to have the information is to have power. Knowing whether or not you have the BRCA mutation, or any other genetic anomaly allows for choice and clarity.

In my family, because I chose to be aggressive about gathering as much information as I could, I was able to have a huge impact. Having been diagnosed with BRCA1 I chose to have surgeries which have allowed me to live my life fully and without stress. I have been able to contact so many branches in my family tree and alert people to the quiet threat that could be waiting to claim our lives. I have heard back from family members who have tested negative and others who have tested positive---all who have been grateful.

I wish I could stand on a mountain top and scream out to the world, "check yourself", "know your body", "be informed and be bold"! There are so many areas in life where we get little say. We don't get to know when the next big earthquake or tornado will come, we don't get to know if today we will be the victim of a crime, or if the next time we fly if that plane will be air safe. However, we do get to be aware, conscientious, and proactive. We can set an example for others that can make a positive difference for generations to come!


Six years have passed and my life has been forever altered. I have lovely perky breasts and no cancer and a passion for wellness and speaking out about what I have learned and making a difference for others. I am loud and proud! I often get phone calls from women who are just entering this scary and trying journey, and it is my privilege to let them know that life goes on, and they will prevail on their path. We all know that there are no assurances in life, and there's no way to know when and where our time to die will come, and until it is that time, what I have learned is that we have NOW. I was so afraid of the unknown and the images I had of having my body mutilated from the mastectomy, of being ruined sexually, of being so disgusting my husband would leave me, of doing it all only to have my life claimed by cancer. I now know that fear is the greatest cancer. I have had three friends die since I was diagnosed with cancer, and I know that there, but for the grace of God go I. However, I have had luck and good grace on my side, and my passion is for life and living life lit up--- My husband adores me and is always by my side. I no longer look at cancer statistics as I did a few years ago. I am not happy that I have this BRCA mutation, but I am happy if my story can make a difference for others and save even one life. I am fulfilled knowing that perhaps others will be motivated and inspired to explore the etiology of their cancer and be fact gatherers and proactive participants in their treatment. I know that I am able to participate in my children's lives, enjoy my husband, celebrate life's special moments, and delight in my health and wellbeing because I chose to pursue the unlikely and the unthinkable and take radical, decisive, life extending action---Life is great and there’s no time to waste a moment of it. I live...surviving cancer whole!

Briar Grossman, L.C.S.W.
Psychotherapist and Life Coach
Co-Founder of www.survivingcancerwhole.com

For more information about cancer, my story, to share your story, and/or to create personal groups to support you on your journey, please see my website.

Surviving Cancer Whole is a website where Chicken Soup For The Soul meets Facebook!

Fellow Fighter Hope

I’ve had many people ask me to share my story, to talk to parents of newly diagnosed children, why don't I post more about it and much more. To be honest, it's difficult for me. I have survivor's guilt. I don't know why I lived while so many others do not. With that being said, I will share some of my story with you. I want my story to give people hope.

Keep in mind as you read this that the amount of chemo, radiation and types of surgery I had were all experimental, this is a long time ago. (Okay, not that long, but……Just sayin…..) I am a case study. They had nobody to compare me to, so they didn't know what was "too much" or not.

Things are done differently now and so much more is known! My mom knew something wasn't right (like most mothers) and wasn't believing the "she must've hit her head to have gotten that knot" and "All babies scream like that, she's not in pain, it's colic....." Finally, after weeks, the golf ball sized knot coming out of my left temple was scanned. I was admitted and was given 3-6 weeks to live. I had Neuroblastoma stage 4. The Cancer had spread everywhere. Liver, brain, lungs, spinal fluid, etc.. My family was told to say goodbye.

At the time of my diagnosis, nobody had ever survived stage 4, Ever. I was dying. The surgeons decided to take me to the OR as a last ditch effort. What did they have to lose, right? I had a radical (for that time) surgery to remove as much cancer as possible. My left adrenal gland, left kidney, partial bowel in more than one location, appendix, gallbladder, over half of my liver, part of my pancreas, surrounding soft tissue and lymph nodes removed. I was taken to the ICU where I was given my Last Rites. I coded many times.

I had very large amounts of radiation to my left temple and abdomen. I also had chemotherapy in astronomical doses. It was even noted at one point that mustard gas killed cancer, so I was even given some form of that too. Crazy, I know, but I was a case study. I will say that the medical staff may have went a bit crazy with their experiments, but they were great people. My parents were struggling financially at that time (not surprising with the medical bills), so the hospital had a phone installed at my parents house. When picked up, they were automatically connected to the oncology/hematology floor. They are like family. They saved my life. (I know He gets the real credit!)

Some people think that once the cancer is gone, then you’re in the clear after a while. What you need to realize is that Neuroblastoma is TOUGH, as all cancer. It takes some nasty, toxic chemicals to kill cancer. Imagine what these toxic chemicals do to your normal cells. It kills them too. It alters them. Not to mention the radiation's effects. The destruction that Cancer has caused is still there, as is the destruction that the treatments caused. Add lifelong effects from the surgeries I’ve had while we‘re at it..

Once you've had Cancer, your chances of a secondary Cancer (different type) goes up. Radiation causes Cancer. Chemo drugs can cause Cancer. Ironic, Isn't it? I'm still checked regularly by Cincinnati CMC. The thing is that we really don't know the long-term effects of these things, which is why I'm still being studied.

I now have a beautiful family. My youngest daughter is battling many congenital birth defects. Among them are an array of upper airway anomalies as well as skeletal problems. Could the treatments that saved my life cause my baby’s health problems? It’s a very distinct possibility. We don’t know how my DNA was effected. Cancer effects your life no matter how long you’ve been in remission.

That is my condensed story of survival. I know I’ve been blessed with an amazing gift. I’ve been given an incredible miracle.

Fellow Fighter Scott

MY STORY:


In July of 2002, I was diagnosed with a Stage 4 Glioblastoma Multiforme Tumor located in the right frontal lobe of my brain. That was 7 years ago and I had just turned 37 the month before. At the time, my wife and I had been married for 10 years and we had 3 children, Jacob (8), Benjamin (6) and Hannah (2). Prior to my
diagnosis, I had been having severe headaches that my Dr. just told me were probably migraines and not to worry about it and to just take Advil.

After about 4 months of these come and go headaches, my vision began to get blurry with the headaches. I had to call my Dr. again and tell him that this was not normal and that he needed to schedule a scan of my head.

Since I have a pacemaker (put in when I was 20 due to an electrical anomaly in my heart) I couldn’t get an MRI, so I had a CT Scan. Immediately after the scan was done thatFriday night, they admitted me to the hospital and scheduled me for surgery Sunday morning.

My family and I had the car packed and ready to go to Florida for summer vacation on Saturday. My parents were already there waiting for us (really bad day).after 5+ hours of surgery that Sunday, the surgeon had removed a 5 ½ oz tumor from my brain that had been wrapped around my optic nerve. When the pathology report came back the Dr’s told me that they don’t even treat that type of tumor and they recommended some specialists that I should talk to. The name that kept coming back was Dr. Henry Friedman at the Brain Tumor Center at Duke. They took me in right away and put together a treatment plan for me.

The Doctors told me that there was hope. I immediately began with 8 weeks of
IMRT brain radiation and began my first round of chemotherapy. Shortly after my second round of chemo, there was some activity in the surgical cavaty and they brought me into a clinical trial that involved a new chemotherapy agent and additional medications administered with it. The trial lasted a year and I did another 2 years of chemo after that.

Today, I am six years with clean checkups, I have a CT scan every six months and I have follow up visits at Duke once a year. Six years ago I had to make a decision to fight or rollover, I chose and still choose to fight. I made a commitment that no matter what they asked me to do that I would do it. No matter what the side effects or risks. As I see it, I had no choice. The alternative was unacceptable and I was prepared to do anything no matter how scared I was and I was scared. I didn’t listen to any of the statistics and stayed away from anything or anyone negative. I tried crying, but it didn’t help and I stopped asking why me and started asking why not me.

As Cancer Fighters and survivors, we can not sit idle and wait for a miracle. we must fight fight fight, stay positive and not give up before the miracle happens. NEVER QUIT NEVER QUIT NEVER QUIT!

I believe that as a survivor, I have a responsibility to help others that are fighting and surviving by sharing my experience strength and hope so that they too may see that miracles do happen and you have to have faith that you will get there. Faith is hope with a track record so don’t stop hoping and do not give up.

Amy's Amazing Story

I would like to introduce you to an amazing woman, Amy. Amy and I met online a while back when she emailed me about a product for her son, Philip. It was then that I learned about Philip who has been bravely fighting for his life since he was a baby. When Philip was three weeks old he was flown to Arnold Palmer. He had a large arachnoid cyst and needed a brain operation. At the age of 6 months the cyst came back and he once again needed a brain operation. Philip has had a total of 15 brain operations to date. He also has had a stroke and over 20 Orthopedic operations. To read more about Philip please visit his CaringBridge Page by clicking HERE

Amy has also asked that I ask all of you to pray for Philip's upcoming surgery to be succesful. He is having a major brain and spine operation May 12th. This will be Philip's 17th brain operation and 3rd spine operation. He has had a stroke on right side and now his left side is losing strength.

Amy has dedicated herself to her family and recently her family was given another battle. Please read Amy's story and leave a comment. If you are a member of Spirit Jump I have sent out an email asking for Spirit Jumps for both Amy and Philip. If you would like to give a Spirit Jump to this family please email spiritjumper@spiritjump.com

You can also visit Amy's blog @ Our Daily Blessings

My name is Amy. I am a 40 year old mother of 4. About a year ago I started to just not feel well. No matter what I did or tried I just did not feel like myself. My first thought was it was due to my weight loss. I had weighed about 223 pounds and been on a pretty strict form of Low carb and gotten down to 136. Instead of feeling better, I felt awful.

In Jan 2008, I decided to go visit my family doctor and explain my concerns with her. She decided to run some basic test , which all turned out "okay". She decided to send me to a rheumatologist to have them run some more advanced testing. The next day I received a phone call from the new DR office and was told their first available appointment was in 6 weeks. While I was disappointed in having to wait for so many weeks, I figured it would be well worth the wait to finally get some answers.

I guess it is never a good thing to place all your hopes on a DR you have never met before. I went to the appt and within 5 minutes she had me diagnosis and pushing me out the door. I left feeling more discouraged then before I went.

I brought the original lab work results from my Family DR to the rheumatologist appt. I explained to her that I was overly tired. That I was cold all the time and had no energy. I also told her I had severe bone pain to the point I was taking 4 advil every 4 to 6 hrs most days. I told her I had a thyroid problem that was very controlled with meds and that my check up with endocrinologist showed my thyroid level was fine .

The DR asked me if I happen to have any stress in my life. She noted that I was a mom to 4 children and that had to be very stressful. I kind of shrugged and said I think it is more of a blessing then stressful. I then shared with her that my oldest son did have some serious medical issues which included over 15 brain operations and a stroke. I told her that while this was stressful it was something that our family had been dealing with for a long time and I felt like my stress level was really pretty well balanced. This was all she needed to hear. She decided right then she wanted me to take sleep medication and a antidepressant. I was a little taken back..okay a lot. I told her that I really felt like there could be something medically wrong . She said she was sure I had and sent me off with the scripts and told me she would see me back in a month. I left feeling defeated and wondering if maybe it was all in mind.

Over the next few months I spent some time reading information on fibromyalgia. I wanted to see if there was a blood test or scan that could show if you have fibromyalgia The more I read the more I learned that it can be hard diagnosis and even harder to treat.

Over the next few months I tried to fake it till I could make it. I kept taking my daily advil and resting on the harder days. I would sleep with my heating pad...sweat all day...things just seem to get worse . NO matter what I did I just felt awful.

In September 2008 I decided I needed to go back to my family DR . My bones hurt so bad I could not even get out of bed some days. I also had developed a painful condition with my feet. It was so odd. They would feel numb but at the same time I had needle pains in them. Sometimes it was hard to walk on them .I explained to her what the rheumatologist had said. She suggested I go back and see my endocrinologist . She thought maybe there was a sugar issue.

My endocrinologist took some labs that showed my sugars to be perfect and once again my thyroid level was perfect on my current level of medication. The endocrinologist wanted me to see a neurologist for a follow up to the pain in my feet. They made me a appt for the following month for a appt and testing. Little did I know this new appointment would end up saving my life.

October 2008 I started having a odd feeling in my left side. I ended up doubled over and was rushed to the ER. It was found that I had a large mass on my left ovary. It would need to be removed immediately. I ended up losing my left ovary and my left tube. I can remember feeling like such a bad mom because it was Halloween and I could not go trick or treat with Cole my 4 year old. I promised myself that I would get better and be ready to enjoy the holidays. My path report came back showing pre cancer cells. It was a relief to have it removed and be able to move on and put it all behind me.

A few weeks later I had my scheduled appt with the neurologist to follow up with my foot pain. He asked me a bunch of medical questions . He asked me how I was feeling and actually listened to my answers. He decided to run some medical test including a lyme test. It was planned for me to return the Wed before Thanksgiving for a EMG of both my feet and to review my blood work.

November 2008...I go for my EMG testing . He said all the blood work that had come back was fine and we continued on with the EMG. As he is doing my test the nurse knocked on the door and brings in some blood work. He shakes his head and I think...wow that person must be getting bad news. Sure enough it was my blood work. He explained to me that while my EMG was normal I did have two blood test that concerned him. He asked if I happen to have any lumps.. I knew then I could be in trouble. I had a appointment with my Family DR the following week because I had a lymph node in my neck that was swollen and had not gone away. He looked at it and then said we need to talk.

He said I needed to see a surgeon and a oncologist within the next week. He wanted a surgeon to remove what he thought was a cyst. He wanted the oncologist to go over my lab work.

From that point on my life changed in ways I never expected.

My first reality lesson was when my caller ID said Cancer center. Wow. Then I had to actually go and walk into the office marked cancer center. I sat there and looked around. I will never forget that "feeling". I looked and wondered if the people there were scared. I wondered what was wrong with them. And I wondered if they would live. I just sat there and felt really bad for the people who were "really" there for cancer. As for me I was there for some blood work mistake. I met with the oncologist who seemed nice enough. He explained to me that I did have some blood work that was abnormal and could indicate cancer but he said he could assure me that it was a fluke. He asked me to have a bunch of blood work done and return to see him after I had my "cyst" removed.

The oncologist wanted me to get a mammogram. It was my first one. I felt empowered getting It done. Taking charge of my health. Of course my first one turned out to be exciting. They found something on my right breast and had me stay for a second one and then a ultrasound. They said they would send the results to my oncologist. The oncologist wanted me to have a MRI done after I healed from my cyst removal.

The following day I saw the surgeon. She was wonderful. She explained to me that we needed to remove the "cyst" . She wanted to me to have a MRI so she could have a mapping of where it was at. WE decided to go ahead and plan the surgery for right after Christmas. I left with a plan of action and was relived I would be able to have the holidays free of operations.

My MRI was scheduled for Dec 4th . A few days before that I noticed that I had a second lymph node. I kind of half joked that there was a baby one now. But within a few days I found I could not swallow easy and my neck was swollen with two very large nodes. The day I had my MRI the radiologist asked to speak to me after my scan. He said there was a issue that needed to be addressed. His first question was had I ever smoked. I said no , why? While doing my scan they happen to see some nodules on my chest wall that concerned them. He said he would be putting a call into the ordering Dr to let them know. I nodded and said thank you. I walked to the bathroom and sat down and cried. I panicked . I called my mom and my MIL and cried hysterical. For the first time I was scared. Really scared. I could not believe all this was happening.

That afternoon my Surgeon's office called and asked me to come in first thing Monday morning. What a wonderful way to spend a weekend...worried too death. She examined my neck and was shocked at the second one that had grown so large. She wanted to put me on a very strong antibiotic and move up my surgery date. She explained that she was not sure she would be able to remove the whole nodule. She said they were both very large and very deep. I had a very unpleasant test done on her office where they put a tube down to look at my vocal cords. I asked her if she was worried about the cyst and she said well...I still feel pretty confident they are cyst but we will not know until we get them out. She decided to do a cell biopsy and send them off to a lab stat. She also decided to have a pathologist in the OR so she has a better idea of what needed to be done. I look back and think..I should of known then.

It was decided we would do a PET scan to follow up on everything after we got the "cyst " out.

Dec 10th I went into the hospital for removal of the cyst and left in really and shape. When I woke up the first thing I realized was I had major pain in my neck and drains and a large bandage wrapped very tight. I whispered to my DH what did they find. He said we needed to wait for the results. I noticed it seemed that no one would look me in the eyes. For days I had a drain and bandages and the most incredible pain I could ever imagine. The pathology results were due to be back the following Monday. I found myself feeling like Monday would never come. I also noticed my DH seemed very distant. I figured it was just a lot of stress.

The Following Monday Jim was on his way to get me for my follow up appt and drain check. The phone rang and it was the nurse. She said she wanted to let me know that I could wait till the following day to come in because they were still waiting on the form and staging of cancer and they hated for me to try to get up and come in when I was in so much pain when the results were not back. She then said. How is your DH doing the Dr was very concerned when she came back to the office and had to tell him you had cancer when he was alone.

So I had cancer.

I called my DH and asked him is he thought we should talk about my cancer diagnosis. He came straight home and said he was sorry. He explained to me that he could not look at me and tell me when we did not know what kind or stage. He also said the DR said she knew I needed to rest from the aggressive surgery and they agreed to wait to tell me when the path came back. Someone forgot to tell the nurse.

I have been asked if I was upset with Jim for lying to me. How could I be mad. He gave me a few more days that I did not know I had cancer. He took care of me knowing that in a few days my whole world would change. He did it out of love.

For days we waited for the final report. It was then decided it needed to be sent to Mayo clinic. The DR saw me daily for weeks. I had to have the drain put back in days before Christmas. The Dr told me the pathologist told her that the whole nodules had to come out. He was sure if any was left it would kill me. She said she was so deep in my neck she had to get on the table. That explained the pain factor.

During this time period the DR noticed a few bumps on my face that had to be tested for MRSA. I ended up with 8 band aides on my face. I then had to go back in a antibiotic that was known to cause CDIFF. So that required some specialized testing every other day. It really felt like I was falling a part. And in some ways I was.

Christmas eve I got the call that the same infection that was on my face tested in my lymph node at MAYO clinic. A course of 12 weeks of strong antibiotics and a Infectious disease Dr was added to the team.

I finally got the diagnosis of NON Hodgkin's stage 2. I also had a secondary infection that needed to be treated. During this time period it was found that the original symptoms I had when I saw the rumetolgist was due to a underlying auto immune disease. .

I am doing a course of once a week chemo and steroids. I just had my second PET scan yesterday to check how the treatment is working. I need to see if the nodules on my chest wall are stable. MY new treatment plan will be based on the scan results. I have a MRI in June of my breast with a follow up for a biopsy.

Yesterday when I had my PET scan done , the tech happen to be getting my history. He said wow you have a lot of lumps in your body. I have to admit that was really hard to hear. I sure hope the new PET shows less "lumps" then last time.

I wish I could come here and say I am sure everything is going to be okay. But I have to admit that I am scared some days . This is all still new to me. Some days it feels like a bad dream. I find myself wondering how things turned out this way. How did I turn into one of those patients in the waiting room of the cancer center? But most days I feel strong. I am digging deep and finding a new stronger me.

I hope Meaghan will invite me back when I can share the great news that I am cancer free.

God is GOOD .

Fellow Fighter Sandra

My name is Sandi. I am now a 33 year mother of four. Starting sometime in 2003 or 2004 I began having *issues*. They were really what I considered fairly minor in the beginning. My family and I moved into a pretty big house. It was a beautiful house but it was an older house with what I considered a fair amount of dust in it so I wasn't too surprised when I developed an itch in my throat. I had allergy or hay fever issues before, so I didn't pay too much attention to it.

The very first real incident I remember is when I was being tickled by my husband. It's a pleasant memory but something odd happened. I began to wheeze a bit. This was not normal for me. I started to feel a little wheezy and when he hugged me I gagged, or choked a bit. We both kind of gave each other a funny look but of course blew it off like it was nothing. I realized little things about me. Tiny things that I didn't think were too big of a deal. When I would bend over to clean the bathtub out it pressed against my chest and it made it a little difficult to breathe. It wasn't so bad that I couldn't do it, but enough to notice something was odd. I noticed bending over to pick something up blood rushed to my head and I felt like my head would explode, as though I had a terrible head cold. I then began feeling a very weird lump in my throat. It felt like someone had their thumbs pressed into my neck lightly but it was a constant all day sensation and it felt so annoying.

I went to the gynecologist for a regular check up and he said he felt a nodule in my throat. He suspected thyroid nodules. I was sent in for a thyroid sonogram and I indeed do have four thyroid nodules. It explained everything for me. I was relieved. I now knew what was wrong or so I thought. I had sonograms on my thyroid ever 3 months. I constantly complained about the pressure in my throat to my doctor. I was eventually sent to an endocrinologist who told me the same things. I had a fine needle biopsy on my thyroid which is a not so pleasant experience, but bearable as long as you don't have a fear of needles. I had thyroid scans done in which I had to take a radioactive pill. I had blood test after blood test. I kept being told the same thing. "Your nodules aren't big enough to be causing these symptoms." I complained to family, friends, anyone who would listen.

There were other odd symptoms as well. I didn't even honestly think about it until after my diagnosis. I began to develop swelling in my eyelids. I woke up in the morning and my eyes were so swollen I could see the lumps literally. I developed dry itchy rashes on my eyelids! It was the most horrid thing. I felt ugly and gross. I didn't know what was going on with me. My husband was traveling for work. He would have probably forced me to get back to the doctor if he had seen more of it first hand but the doctor prescribed me Elidel which is an eczema medicine for my eyelids. It worked. I was put on Allegra and Singulair for the breathing issues. I was now short of breath and it was always worse at night and when I would lie flat. The Singulair did help. The doctor explained to me later why it helped but at the time we thought I might be developing asthma or severe allergies. I went through more than one misdiagnosis and even saw an Ear, Nose and Throat specialist who sprayed an awful numbing spray into my throat and nose and then stuck a tiny camera on a long hose up my nose and down my throat. It showed nothing. They did a CT scan of my sinuses. I still cannot figure that one out. I had no trouble in that area.

I dealt with these issues and all the prescriptions until 2007. We moved out of that big house so my husband could get off the road. It was a huge move. The house was a big one and I had a very difficult time packing and moving. I felt so tired and lazy. I couldn't carry the boxes without running out of breath. My muscles felt weak and worn out. While packing boxes my sister was helping carry them and I was thinking of how much stronger she was then me now and I felt so lazy and just didn't understand it. My best friend drove by and saw us moving. I knew I looked tired and bad. I was pale and wheezing bad. She later told me she knew something was wrong. I didn't know it, but I was pregnant then too.

We finally got into the new place and I was worn out. I was so incredibly tired. I could no longer lie down flat at all. My family came up to visit for my daughter's birthdays. My two oldest share the same birthday in the middle of March. Finally everyone could actually see that my chest seemed swollen. I am a small person whose clavicles tend to show. You could see the one on the left side of my chest but not the right. The indention you should have in your neck was full and swollen. My sister said she could see it. I felt validated that everyone could finally see what I had been saying for years.

At the end of April I was very suspicious I might be pregnant so I took a pregnancy test. It was positive. I was not super happy because I was so scared. I knew I wasn't feeling right. I didn't know how I would carry a pregnancy to term. I was confused. I wanted to feel excited but I didn't know what was wrong with me.


Finally I got our insurance figured out so I could see a new doctor. I went to another Ear, Nose and Throat specialist who again saw nothing wrong. She sent me to another Endocrinologist. This endocrinologist saved my life but I only saw her once. She immediately saw something wrong. At this point I couldn't even lift my arms to put my hair into a ponytail. My face turned red and I felt like I was choking and my head felt like it would explode. They did another fine needle biopsy and when she did another sonogram I told her I felt the fullness lower. It wasn't right on the thyroid like they always said. I felt it lower, closer to the upper part of my chest and base of my neck. While doing the sonogram she muttered she saw something but it didn't "look connected" to my thyroid. I was a little nervous but not too much. They sent me in for an MRI and called us back the next day for the results. We got there but she wasn't there. They told us it was normal procedure to refer us to the cancer center with any kind of a mass. So they had found a mass in my chest on the MRI.

At this point I was miserable barely having the strength to stand or breathe. We got to the cancer center and I was scared. I told myself I was NOT one of those people. I did not have cancer. I wasn't one of them! I really did say it a lot. I was terrified. I got into the room and it took a long time for the doctor to get in there. He finally came in and sat us down. He looked at us and told me it appeared to be a Lymphoma. It looked like Hodgkin's Lymphoma. I was trying to compute what he was saying but I was confused. I was thinking in my mind, "Isn't lymphoma cancer?" I was trying to focus, wanting to cry, fighting back tears....realizing I was pregnant! What was going to happen? He told us it was a very curable, treatable cancer. He stressed we would do everything to help me and the baby. He got right on the phone with a Cardiac Surgeon because of the location of my tumor. I was in surgery the following morning. The doctor performed his first surgery on a patient sitting up. I couldn't lie flat so we had no choice. I couldn't have any other scans to see if it had spread either because I could not lie down for an MRI and I was pregnant so I couldn't get any other kinds of scans. I had the surgery and was in ICU. I needed a blood transfusion after surgery. I felt horrible. I couldn't swallow or breathe and I hurt everywhere. I learned later I had a chest tube to drain fluid from my chest and the surgeon said he took about four coffee cups full of fluid out during the surgery itself. I had anesthesia that made me sick and I stayed sick throughout the rest of the pregnancy and cancer. I always felt nauseated. I threw up and dry heaved a lot.

My husband was there through it all. They made him sleep in another room but it was such a blessing that they did that! My 3 older children missed a lot of school but they were all so understanding as was my husband's job. They did a sonogram on me the morning after surgery. The baby's heart was beating strong. I was about 7 weeks pregnant. She had made it through the surgery and was still going strong.

I got out of the hospital and a week later they confirmed it was Hodgkin's. The sample they took from me was so hard they couldn't cut through it. They sent it off to the Mayo Clinic where they made the official diagnosis. I was so scared. I was pregnant and I had cancer. I never even thought this could happen. I was sent to a specialist in St. Louis Missouri where they confirmed the diagnosis and suggested I have a therapeutic abortion. I looked at her and asked if my life was in danger in any way if I carried the pregnancy to term. She said no. She told me that she thought it was best since we didn't know for sure if the chemo would harm the baby. I needed to start it right away. We could not wait until second trimester when they suspect it might be safer. She didn't think I would make it 3 weeks to the second trimester. She thought it would be emotionally too hard on me if I had a baby born with problems. I looked at her and my husband and told them both I could not do that. I could not do it because I wouldn't be better anyway even I beat the cancer. My baby had just as much of a right to beat this cancer as I did and my husband agreed. So we pushed on, fighting this cancer for me and my baby.

My surgery had been May 4, 2007 and my first chemo was on May 22, 2007. It lasted for about 3 1/2 hours. I had 4 drugs. The chemo regimen is called ABVD. I worried the whole time about hurting my baby, not knowing what kinds of risks there could be. I had read some things online and found nothing. I saw risks of cleft palate and other minor things but nothing major. I had seen many instances where the babys were fine. I had hope. I found a website called pregnantwithcancer.org and was paired up with a woman who had the same cancer and a 2 year old little girl who had went through chemo while pregnant and everything just like I was. She was my support person. I was so happy and thankful to have someone to talk to. We e-mailed and talked. I had her to talk to whenever I had a question. I was so thankful I found this site! You should read some of the stories on there if you have time. It's amazing but chemo may not be as dangerous to pregnancy as once thought.

I had 12 chemotherapy treatments in all. I had my last treatment on October 23rd 2007. The baby had been checking out out fine through it all. My 2nd to last chemo treatment however did trigger some preterm contractions. I spent 5 days in the hospital and had to be life flighted from one hospital to another in case the baby was born. I was 30 weeks along. I was so scared. I was put on a magnesium drip after being given steroid injections for the baby's lungs and then given some injections to stop contractions which did not work. The magnesium gave me the worst headache and acid reflux of my life, not to mention how high I felt. It was awful. Finally the contractions stopped. I had my last chemo and the contractions started again but they were able to stop them in one night this time. I went home and then waited. I had non stress tests on baby once a week in which she checked out perfect each time.

I was to be induced at 37 weeks because I needed to start radiation December 3rd. She was due December 13th. The doctors wanted me to have time to recover though between chemo, delivery of a baby and radiation. So the induction was planned. The baby didn't care. At 36 weeks she decided it was time.

I woke up to go to the bathroom at about 3 a.m. I lied back down on the couch instead of walking back up the stairs to bed. I rolled over and half asleep thought I heard a pop. I kind of openend my eyes and thought to myself it could be my water. I had already had 3 children though and my water had never broken prior to labor. I didn't feel any fluid so I just blew it off and went back to sleep. I rolled again and then I felt a small gush. I opened my eyes and thought to myself it could be my water. I was slightly panicked but unsure. I sat up. I felt nothing more. I went to the bathroom and wiped up and thought I'd walk a bit and see if anything else happened. I took two steps and that was it. I was gushing fluid. I freaked out. I was four weeks early! I was still in shock and disbelief as well. I had no pants on and walked all the way upstairs to my bedroom, turned on the light, stood next to my husband, tapped him on the shoulder and said "ummmm honey, I think my water may have broken."

No sooner had the words left my mouth than he was gone and there was an empty side of his bed. I looked down at my leg slowly and saw a tiny bit of blood so I knew it was my water. He went into super dad mode and started gathering up the kids out of their beds and telling them to get dressed. He got them into their coats as I put on my pants crying that they were getting soaked. I had NO idea my water breaking would be quite so bad. I was drenched but luckily we lived about 2 minutes from the hospital. We got there and they checked me in. We lived 2 hours from any family. We had planned the induction at a children's hospital in that same area. It specialized in premature or births with issues. I was nervous. I was in labor but had no contractions yet. I was life flighted to the other hospital. My husband had to take our dog to the kennel, drive my kids 2 hours to my parents house and drive 45 minutes BACK to the hospital I was life flighted to. I got checked into my room around 6:45 a.m. My contractions started getting bad around 9 a.m. and my husband finally got there with my mom around 10 a.m. I got my epidural right when he got there. My husband was so tired at this point and I was feeling pretty good actually with the epidural that he drifted off to sleep in the chair next to my bed. My mom was there though chatting my ear off and pretty excited really. We knew it was a tense moment but I had faith my baby would be ok.

My blood pressure kept dropping very low which made me nervous but really we did ok. I pushed for 10 minutes tops and Gabriella Faith was born at 6 lbs. 2.8 oz on November 17th, 2007. I named her Gabriella because it means "Strong by faith in God." Jason my husband liked the name and after we knew the meaning we knew it was meant to be. I chose her middle name because it took a whole lot of faith to get through all of this. She needed no NICU though we had a whole bunch of preemie docs and special doctors there in the room. She cried before she came all the way out of me. She was healthy and well, perfect in every way. She came home in 2 days with me from the hospital. I started radiation when she was just a couple of weeks old. I had 17 treatments every single day except the weekends and holidays. It was Christmas time, so I did have that time off. I finished my treatments and had my first clear PET scan in February of 2008. I have had several follow ups and am still cancer free. Gabriella turned one just recently and is a huge fan of Yo Gabba Gabba. (I always wondered if she thought they were saying her name because I called her Gabbi Gabbers) lol She's a big happy girl. She waves and smiles at everyone. I get stopped in the stores and restaurants because she's smiling and waving at everyone.

I have my next follow up on January 22nd. I hope to get the same good results I have gotten from my last 3 follow ups. I have a follow up every 3 months. It will eventually taper off to every 6 months, then every year forever pretty much. After 5 years I can be declared cured. I still get pressure in my neck and sometimes feel a lump in there but it comes and goes. It's enough to make me paranoid but I think it's just things I have to get used to. I have scar tissue in my chest that will always be there. The tumor had wrapped itself around my major veins and it cannot be cut out. My doctor said I could have had a stroke or heart attack at any time. I had lots of fluid around my heart and so many issues, that I don't think I'll ever feel like I did before but compared to that I still feel so much better. I can breathe. I can inhale and breathe in deeply without it hurting. I can hold my baby girl in my arms. I hear her call me mommy and I look into her eyes and I never take one moment for granted. I am so blessed and thankful and happy that I got through it all. I had a strong support system and such love from my family and most of all my husband who took on the job of husband, and caregiver to me. He became the mom and dad of our household because I couldn't get out of bed. I couldn't eat. I lost weight. I was 92 pounds when I found out I was pregnant. He went anywhere to get me anything I thought I could eat. I gasped and wheezed all night as I slept. I caught him watching me twice. I woke up and he was there, staring at me, watching me sleep...making sure I didn't die. I love him and thank him for taking such good care of me and never letting me believe I would die. I got through it and had the strenth because of him and my girls who also had to grow up too fast. My oldest daughter washed dishes, brought me food and helped clean house. She was just 10.

I don't take a single day for granted anymore. I do have faith though that anything is possible. I have a wonderful family and a beautiful healthy baby girl!! Thanks for taking the time to read my story. I sit here and feel I have left so much out yet this is so long so I will just end it here. My story has a happy ending. I am a cancer survivor and a mother to a miracle baby.