Saturday, October 17, 2009

Finding Strength

When I look back to my life five years ago and think about all the things I would let get to me, I can’t help but laugh. Simple things would make me yell, “My life sucks!” Just daily stuff that we all complain about because we can.

Then my whole life was turned upside down in September 2004 when our new family doctor noticed a large lump in my throat and asked me about it. I told him that I’d had it for many years and no one seemed to think it was a big deal. He felt it was definitely a big deal and immediately ordered blood tests and an ultrasound on my neck.

The ultrasound found four calcified nodules on my thyroid and two weeks later I had a fine needle biopsy done. Shortly after that I had my results- medullary thyroid cancer. It is a rare form of thyroid cancer that leads to testing for a rare genetic disorder. Three weeks later those results came back and I was diagnosed with Multiple Endocrine Neoplasia Type 2a or MEN2a as its known.

You would think the bottom would fall out on my world and I would completely collapse in a puddle of tears. Here I am not even thirty years old with cancer, plus a genetic disorder that causes MORE cancer. It set me back on my heels but once I found out I wasn’t going to die within the next 6 months, I knew everything would be okay. I cried some, but then I wiped the tears and went on with life. I knew I needed to because I’m the Mommy and I had to be strong for my kids.

Immediately after my diagnosis we determined that my three children (who were 13, 10, and 2 at the time) needed to be tested for MEN2a as well. It is genetic and each child of a person with this disorder has a 50% chance of having it as well. Blood was drawn on all three kids, we crossed our fingers as we waited, and almost a month later we had our results.

That is when my world felt like it was coming apart. It’s one thing to be told that you have cancer and will have to deal with it for the rest of your life but your babies? How can these perfect little people who are your whole world have to deal with this too? I prayed nightly that some miracle would happen and all three children would come back negative but I knew in my heart that our chances were very slim.

I remember the day the endocrinologist gave me the news like it was yesterday. Her exact words were “Your little one, A, he came back negative so he’s fine and will never have to deal with this” then tears started forming in her eyes and her voice broke “but your other two children tested positive, so they have this and will have to be tested and watched for the cancers”. She cried, hugged me, and told me how sorry she was. I cried only a few tears then straightened up; all I could think was “I’ll be strong because I’m the Mom and I just have to be. They need me”.

In January 2005, I had my first surgery removing my adrenal glands and the adrenal cancer. This put me on steroid replacement for life. Two months before my 30th birthday I became a cancer survivor only to start battling another one.

On March 30th, my oldest children both had thyroidectomies. We hoped that we were getting a jump on the medullary cancer before it could start but when the pathology reports came back after surgery we found that the cancer had already started in both of them. My two amazing children were now cancer survivors at almost fourteen and ten. We got to the cancer in time and they will never have to worry about it again, but they will take thyroid hormone replacement for the rest of their lives.

Two months later I had another surgery this time removing my thyroid (and any cancer there), three parathyroids, and any lymph nodes in my neck and shoulders that we could find to clean out as much medullary cancer as we could. This left me with a U-shaped scar that covers most of my neck and thyroid hormone replacement for good. When you think of what I had going in and what I traded it for, I think I’ve made out pretty well and feel proud of these “battle scars”.

We didn’t get all of the medullary cancer in time but I don’t worry about it. In fact, in December 2007 I found out that the cancer had spread to more lymph nodes in my neck, nodes in both armpits, and six little tumors in my lungs. It's okay though because I know I have at least 5 to 10 years with my children and that is more than a lot of people with cancer get. I’ll take any time I’m given and be more than happy with it because it means I get to watch my babies grow. I wouldn’t miss that for the world.

The way I act and live with this disorder sets an example for how my oldest two children will live their lives with it. Knowing that, how could I ever possibly do anything other than be strong? I will be strong because it shows them how to be strong. I will have hope because it means they will face this with hope. I will love life because in turn they will learn to love life too and if they are anything like their mother, they will remember to laugh even when things get hard.

I may be a mom living with cancer but when it comes right down to it, I’m just a mom… living. I choose to fight for life and live it in the best way I can. I hope you do too.

*I wanted to add that I originally wrote this for an ezine called The Whole Mom but found it again and updated it when I was looking for something to include at Mothers With Cancer. Just in case you see it elsewhere on the web.*


Meg_L said...

Jo, you are one amazing woman.

doc said...

Amazing yes, and hot. There, I said it.

Andrea R said...

You're awesome, Jo. :)

Jo said...

DOC THINKS I'M HOT!!!!! I feel so awesomely special now. YAY! :)

Thank you ladies. I think all of you are pretty amazing too. Honestly.

contemplator said...

Jo, you're incredible. You have so much spirit on top of everything else you're dealing with. I wouldn't miss your wit for the world!

RivkA with a capital A said...

Wow, Jo, your attitude is impressive!

I don't know how much time I have, but I would really like to live with this for a LONG time!!

I want to watch my kids get married and have their own kids.

I don't ever want to die, but I will feel better if I know that all my kids will be taken care of by someone else!

Jo said...

Rivka-thank you and I honestly think you are amazing and look forward to following you on your blog through your own continuing journey. Much love and hugz.

RivkA with a capital A said...

Jo, this is so powerful!

My cancer is also genetic, but they don't have enough information to test my kids yet.

My girls will have to start getting annual check-ups, including mammograms, from age 25!!

Setting an example for our kids is a strong motivator.

Recently, I realized that, in addition to being strong and positive, I needed to share with my kids (15,13,11) some of my sadness -- so that they would feel ok expressing theirs.

We do not dwell on sadness, but I have started making "space" for it. Still, we always end our discussions on a positive note. Because we are optimistic about the future.

I just want to live long enough for them to find the cure!!!

I have added you to my blogroll, so I can follow you directly.

michele said...

Jo, please let us know how you're doing. Your blog has me hooked. You are one courageous, feisty woman.

RivkA with a capital A said...

Hey Jo,

I am starting a group blog, for mothers living with cancer.

All women facing cancer are welcome to join, but the blog will focus primarily on mothers who have advanced breast (or other) cancer -- i.e. we will be living with cancer for the rest of our lives or until there is a cure.

Anyone interested in joining, should contact me at:

Anyone interested in reading the blog should visit us at:

Hope to be up and running in a week or two!

RivkA with a capital A said...

ps. you can use this post as your "intro" post on the new blog.

Hippofatamus said...

I have been lacking the strength that you have shown. Though as a mom, my kids are what pushes me to survive to fight another day. Thanks for a very inspiring blog...

Brad K. said...

Blessed be.

Jo said...

Kauline and Brad- thank you so much for your comments and I'm sorry it took me so long to reply. My kids are what keeps me going too. :)

Vicki J said...

I don't know how I missed your comment on my blog last year. I remember you from our 20ish days and I am also a mom living with cancer. Your story touched me and you are amazing. I am now following your blog and have added you to my blogroll. Keep in touch. ~Vicki