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.*

Wednesday, October 07, 2009

My Five Year Anniversary

On October 7th, 2004 I was diagnosed with medullary thyroid cancer. Shortly thereafter I was told that someone with it spread as much as mine had was given a 16% statistical chance of making it to 5 years. One doctor told me not to listen to statistics so since then I haven't but I can't help but be excited that...

I've made it to FIVE YEARS!!!!!

I can not even begin to express how excited I am about this. Honestly I never thought the cancer itself would kill me before the five year mark but all the other medical stuff has had me worried. The lack of adrenal glands can get pretty scary (almost dying last year was quite traumatizing) and had me wondering if it was going to cause my time to be up. Making it five more years means my body might be scarred, broken, in pain all the time, and sickly but my spirit is holding it all together just fine. I can't wait for my TEN year anniversary. *smile*

So I just want to thank all my friends who have been with me on this ride. Thank you for the calls, gifts, quilts, love, cards, thoughts, and prayers. You have no idea how much they have meant to me. Thank you for listening to me rant and yes, even cry. Thank you for not giving up even though I know some of you have been scared to death.

Here's to another five years. And then another... and another... and another.... haha.

Friday, August 21, 2009


Chronic Costochondritis is what my last trip to Urgent Care on August 15th left me diagnosed with. It might sound scary but compared to the fact that we thought I was trying to have a heart attack... I'll take it!!

Off and on for the last four months or more I've been getting mild chest pains whenever I get really stressed out. After my adrenalectomy I was told that large amounts of stress were a no-no because my body could no longer produce the adrenaline needed to help my heart deal with it. So since then I've honestly been worried about having a heart attack because I KNEW the stress wasn't going to go anywhere! LOL.

Fast forward to August 13th when I got really stressed out and pissed off at my teenagers thus causing my chest to explode in pain. I can honestly say I have never felt such horrid all consuming pain in my life. Natural childbirth again would have been more enticing! As you can see from the first link, costochondritis is not a surprise when you have fibromyalgia. Of course, it was a surprise to me because I had never heard of it before.

So I have yet another diagnosis, with more pain, that isn't going anywhere to add to the long list now. OY. Is it nap time yet? 

Tuesday, June 30, 2009

Wow Has It Been A Year?

I can't believe it's been a year since I wrote a post about us on here. It's funny that this post is to share the results of Big B's latest 24 hour urine with everyone because that's what my last one was about.

The results from this time last year were actually slightly elevated which meant it was likely pheochromocytomas were forming but it wasn't something to worry about yet. I don't know why I posted that it was normal and I apologize for that.

His most recent results (which are from last week) show that he has NOT gone up at all and while everything is still slightly elevated it isn't any higher than this time last year so that is very good news! It means that we are still in watch and see mode but not having to hurry towards surgery anytime soon.

We'll continue to repeat the results every six months and keep an eye on things so we're not caught off guard like we were when I was diagnosed.

More good news is that he is still not even showing a trace of calcitonin so he is at FOUR years of being considered cured of medullary thyroid cancer and I for one couldn't be happier. I hate knowing that Big B and Sis have to deal with this at all but I'm so happy we caught it so early with them and their life will be so much better than mine. As a mom I can't ask for more than that.

Hugz and I will try to post more often.

Friday, February 27, 2009

Cancer Claims Another Wonderful Woman

Yes, I know I haven't written in many months and you have no clue how many times I have started a post only to delete it because my heart just wasn't in it. Blogging just honestly hasn't ranked very high on the priority list lately I guess and for that I apologize to those of you who read here.

Tonight though I read something that broke my heart and I knew that I couldn't just ignore it and not post.

Those of you who have followed my blog have read my posts having to do with Lisa from Clusterfook. The woman is amazing as she has been through cancer three times now. Her strength and outlook through it all taught me alot about how to handle living with cancer with grace and an immense amount of class.

Unfortunately I have just read that she is now in the final days of her battle and it breaks my heart. She was realistic from the beginning about her chances of making it through this time but I'll be honest and say I really hoped she would beat the odds and come out okay. She deserved a break this time, you know?

So my point of making my first post back blogging about Lisa is so that anyone who reads will add her and her family (she is leaving behind a husband and two young daughters) to your thoughts, prayers, loving vibes, or whatever you do as she is very deserving of them. From what I've read, she has fought as hard as she could and dealt with the pain long enough. Please hope she is finally able to be at peace as much as it breaks my heart to ask for her passing.

Lisa- I know you will never read this but thank you for sharing your life with us online and for the emails that helped me become better about living with my own cancer. Thank you for being so amazing, graceful, classy, and honest no matter what. I hope I can one day be even have the woman you are. You've set the bar very high sweetheart.

Go in peace, dear.