Thursday, January 24, 2008

Finding Strength

When I look back to my life three 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 it’s 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 since 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, one in my right breast, and six 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.

12 Comments:

Paula said...

I mean this with all my heart, this has to be the most inspiring and life-changing, attitude-changing then I've ever read. Thank you for sharing your story Jo. I feel pretty small and ashamed for the things I worry about and let bother me now. I want to be more like you. A truly strong woman.

Ellen said...

Jo, I totally agree with Paula. Your spirit and attitude towards all the hardship that you and your family have encountered is inspiring and something I deeply respect.

The beautiful goal you have set yourself to be an example to (all of) your kids is something all of us parents can take as an example.

I truly, truly hope there are people out there taking care of you yourself too..

Jos said...

Dear Jo,

You know I have seen this post being on the BRB blog's inside as a 'draft' for a couple of days already.

To read your 'story' and to see how strong you are, and at the same time realizing so deeply that you have no other choice than to decide to be strong..

I can not begin to try and express how I admire you for being able to deal with this.

Your comment on my Link Call Invitation post demonstrates that you have a strong weapon available to help you dealing with this: an incredible sense of humor.

And, now that I have read your post, I know that your other weapon is your love for your children.

I hope you will be able to find additional strength in your third and very strong 'weapon': the inspiration you are providing to others -- just look at the comments above this one.

Thank you, Jo..

ndpthepoetress - Jeane Michelle Culp said...

Thank You Jo for sharing this. I can only echo the sentiments of those whom have commented with Hugs in abundance. You remind me of the Celine Dion song, Because You Loved Me that I have changed a few lyrics to accent you, your strength, your Spiritualness:

You are strength for where there is weakness
You are a voice for those who can not speak
You are the eyes for those who have yet to see
You see the best there is
Lifting us up when we can not begin to understand
You give faith 'coz you believe

Jos said...

Exactly!

Susan Helene Gottfried said...

Holy smoke, Jo. I can't say anything other than what the others have. That's probably good; I'm speechless.

Jo said...

Oh my goodness, thank you all so very much. I am so humbled by your comments and thoughts about me. I honestly feel that I'm doing nothing that any other person would do in my place...nothing special but means so much to me that you all are able to take something from my story.

I cried reading these comments because they are so beautiful. Again, thank you.

Paula- I owe you an email but I wanted to say that YOU have always been someone that I admire so I am in awe of you.

Ellen- Thank you so much. Your respect is priceless.

Jos- Hopefully you know I have adored you from the start. Your posts, emails, and comments are always so fun and nice to read. There are many times I've come online just to read something by you so I can start my day with a smile. Thank you.

Jeane- your lyrics are when I actually broke down crying. They are beautiful and such a beautiful thing to say to me. Thank you.

Susan- Thank you very much.

ndpthepoetress - Jeane Michelle Culp said...

We adore you Jo! :)

Robin Lee Sardini said...

Wow, Jo! There's a lot of living in you yet. I can feel it! Your story takes us to the heart of some of your most difficult challenges. In that heart I see courage and grace and beauty and strength...In your words there is healing. You give and WE receive. I pray that same healing will touch you and envelope you and your children. Thank you for being such a Gift to us!
Many Blessings and much Love to you,
Robin

mauniejames said...

Dear Jo,
You must have posted this when hubby and I were driving down to Florida...you are the strongest and
have the most wonderful attitude of anyone I can even think of..I sent an email to my cousin to see if she can draw from your strength..you are an amazing mother and have the very best attitude of anyone...God Bless you and your children..

maunie

Jo said...

Robin and Maunie- thank you both very much. I think I'm still in awe of people feeling so much from my story. To me it's just life so it's not very awe inspiring you know? :) I'm glad it helps others though. That makes me feel good.

Hugz

Shinade said...

Dear Jo,
I too stand in amazement of your courage, attitude and spirit.

I echoe all of the things that have already been said by the others.

I do not know you personally. But, I shall carry you and your story within my heart from this day forward.

You and your story are absolutely one of the most touching and inspirational things that I have ever run across.

You are truly one incredible and amazing human being that God has sent forth to help teach us all what is truly valuable in our walk on this earth......