Monday, March 1, 2010

Liba, intruducing herself.

I am a busy mommy to some adorable but medically involved children, dealing with everything that came along with advanced thyroid cancer. I thought my plate was full before. Then I found out that my plate was really a serving bowl.

I am not sure how I fit in here. I have cancer, but the kind that should be curable. It should never have spread like it did and it should all be long gone. None the less I am still living with it and it has changed my life. The government considers me permanently disabled and the cancer is still here.

I have papillary thyroid cancer.

My original biopsy was a year ago last Thursday and confirmation that the tumor that they found on ultrasound is cancerous came today.

In April of 2009 I had a 1o hour surgery to remove my thyroid, more than 90 lymph nodes (45 cancerous), and three tumors outside of my lymph nodes and thyroid (all of which were wrapped around important nerves in my neck). There was cancerous tissue surrounding my thyroid and all of the way to my trachea.

In August I had a radioactive iodine treatment. It is targeted oral radiation, with the same radioactive isotope that caused the health issues after Chernobyl, that is supposed to get rid of all of the remaining thyroid cells and thyroid cancer. Because of the large dose I had 9 days of isolation, the first half in the hospital in a room no one else could enter and I could not leave, followed by some time in my cousins much airier and prettier basement guest bedroom. The radiation is supposed to kill the cancer for six to twelve months, but mine is growing instead.

My surgery left me dealing with surgically induced hypoparathyroidism. My body no longer regulates calcium so we have to do it with medication. It is a tricky balance made harder by the fact that I have Crohn's and absorption issues. Calcium too high or too low are both potentially fatal. When things are going really well I have weekly blood draws to check levels, when they are not I have daily draws and IV calcium. My hands are numb pretty much all of the time from the hypocalciemia and, since muscles use calcium, the more I do the worse it gets and the more often I need IV.

Currently I have a new 1cm mass that was found on routine ultrasound of my neck. It is in my neck behind my carotid artery, not accessible for biopsy, but my blood tests confirm that there is still cancer left, so my oncologist has recommended another surgery followed by another radioactive iodine treatment.

I live in Israel and have been married for 13 years, to a wonderful and supportive husband. We have four children, girls ages 11, 9, 5 and a 3 year old boy. My hospitalizations and isolations are particularly difficult because they leave my husband sole caregiver. My son has complex medical needs and requires a fair bit of skilled nursing care and night time monitoring. I worry about my husband and how much is on his shoulders when I am gone, but he doesn't complain.

On top of my own battle I lost my father to colon cancer when I was 16 and my brother just started radiation for parotid (salivary gland) cancer. I hate cancer

1 comment:

  1. Liba -- first of all, I am so glad you joined our blog!! I know that your voice will enrich our group. I am certain you will make us laugh. It is also OK to make us cry. We all know, only too well, how challenging it is to be a young mother, living with cancer.

    Sometimes you make me laugh, even when that is not your intention!!

    Of course you fit in here! Who cares if your cancer should be curable. Right now, it's not, and you are in the same boat as the rest of us! (I really wish you were not; but here you are.)

    So, welcome aboard!