If you have been reading this blog for some time you know that I lost my mother to cancer 5 1/2 years ago. What you may not know is that I inherited the very same cancer that took her life. We found out in 1989 that Neets had Medullary Thyroid Cancer. The disease was so aggressive that they told her that she had six months to live. Refusing to accept this death sentence, she turned 6 months into 16 years. Through her advocacy and persistance, our doctors at Johns Hopkins continued to test for a genetic marker that caused the disease. In 2000, they found it. My brother, sister and I were all tested and both my brother Darren and I tested positive for the gene. In January of 2000 we had our thyroids removed. Darren had traces of cancer in his thyroid, but on none of the surrounding lymph nodes. I not only had cancer on my thyroid, but on two of the four lymph nodes that they removed.
I will never forget the look of pain on my mother’s face. How guilty she felt that she somehow was the cause of this pain for her children. At the time I was 22, childless and completely disregarded these emotions.
I can honestly say that my mother saved our lives. We now work closely with our doctors to ensure that the cancer is under control. While I have minor traces of MTC, nothing to be alarmed of at this point. Is it a curse? In a way, but it is also a blessing. We are so fortunate to have this information far enough in advance to prevent this disease from taking another life.
So, here comes the most difficult part for me. A few weeks ago, we had our girls tested for this gene. The results came back last week. E does not have it, Anna does. In a flash, it all came rushing to me- the guilt my mother felt.
At the very least, we hope that (because we know the facts early enough) in the grand scheme of things it would mean surgery for Anna Lou and an understanding of the disease so that she can have her children tested. We will have to take her back for more blood work to make sure that there are no viable traces of cancer in her body (which would be quite rare at this age.) If there are not, than she will most likely have a thyroidectomy at age six.
Does it suck? Yes. Is it going to kill me to put my baby through this? Yes. But if this testing was available when my mother was a child, she would be with us today. I just wish the curse would have ended with me.
Lots of love to our little cousins. You’re an amazing Mom.
So sorry to hear about the results but so glad that you have this ability to ensure they’re protected. Thinking of you.
Krista, thank you for this post! So incredibly moving. I did genetic testing for a health story I wrote a few years ago and it was one of the scariest things I’ve ever done. But, we’re so lucky it’s an option now. Big hugs to you and your girls.
Oh Krista….what an amazing post, I too cannot imagine your emotions at dealing with all this.
But I am a mother and know that you will do whatever it takes as any mother would….you speak with great courage. Clearly that was something you also inherited from your own mother who must have been an incredible fighter.
Best wishes to you….
Ah I’m so sorry you have to continue to deal with this- thank goodness the testing is available and wishing your family all the best. xo
Oh wow, I am so sorry you’ve had to deal with all of this. How frightening. I can’t even imagine the range of emotions you’re going through. At least this disease is detectable and hopefully the early prevention will be the key. Praying for the best of health for all of you!