Living with Cancer

 

It’s been 651 days since I heard the words “You have Cancer”.  It’s been 651 days waiting for a clean scan.

I have Metastatic Tall Cell Variant Papillary Thyroid Cancer that spread to my neck and lymph nodes. I had surgery to remove my entire thyroid and many lymph nodes in my neck. I underwent RAI and continuously go for bloodwork, scans, and ultrasounds. I see a doctor every 3 months and try hard in-between to just be, to live life and be normal but often feel I live scan to scan.  I get my hopes up after each test that I am going to hear the words “All Clear”.

When I was diagnosed, I assumed I would have surgery to remove ALL of the cancer and be left to deal with the aftermath of not having a thyroid, that in itself is sometimes a daily feat. I had no idea the actual importance of what that small little butterfly gland held our bodies accountable for. To my surprise I was left without a thyroid and left with cancer.

My primary cancer was in my thyroid gland however cancer cells broke away and traveled through my lymph system and metastasized in my neck. In January, on my birthday I had all what I thought would be my “last” set of full testing done and by last I mean finally turning over to yearly checks. I saw my Cancer Surgeon and while the good news was my tumor markers were low almost undetectable, the treatment did not cure the cancer but stunted the growth and stopped the spread. I was told however the chance of me ever getting a “clean” scan is slim to none. Her saying see you in a year is just not possible. I was told that I will have to continue to see my doctors regularly and be followed closely alternating endocrinology and my surgeon for the rest of my life because the chance of active reoccurrence is high with my type of cancer and with tall cell groups being an aggressive form. I will get my blood work done more often because that can detect an active new occurrence even before my doctor could find any trace of a new tumor. She is however cutting down the scans and radiology testing for now being that I have an active lymph node, tissue remains, and nothing changes. The less radiation I am exposed to at this point the better.

This news was hard for me to take. I did not want to talk about it. It was hard to process.  I still
do not really want to talk about, but I live with this every single day and some days it eats me up by not talking about it. The last 3 months all I have done is think about it, research, contemplated about going to Sloan or Dana Farber but the more I learned the more I realized this is my life, getting a second opinion is not going to change my diagnosis or my treatment plan. I have been back and forth and up and down at times living in the moment, to just staying in bed, to working late, drinking too much wine, sleeping too much, not sleeping at all, eating too much or nothing at all, to planning too far ahead or nothing at all, to not doing anything to doing everything all at once, from talking too much to shutting down, being happy and feeling mad. It has been an on and off rollercoaster of emotions since January. This last week being on vacation and taking a break from my everyday routine of daily life reminded me of all the things I must look forward to and do. Cancer is the hand I was dealt and now I will pick myself up and start dealing with where I am now in the journey.

Now that I know my reasonable expectations were set too high for my cancer journey and a clean scan is not in my future I can move on and away from that goal. My longing for the “all clear” is now put away and figuring out what remains in my life with cancer is a better goal. Everything changes in your life when you have cancer. Friends change, our roles in our families change, our goals change, our priorities change, even our values change.

While there may be a resemblance of my old life, it has undergone major revisions. A diagnosis of cancer changes not just what is important, but what is not important. It all changes. You change.

I must give myself time to feel, process and sometimes feel defeated. It’s okay. My life can be full and enjoyable even after with cancer. Yes, there are scars, inside and out but never I will never be ashamed of a scar. “It simply means that I was stronger than whatever tried to hurt me." 

I will also never be ashamed of sharing, writing, talking, feeling, or needing help. Nobody with cancer would choose this journey. Along with all the changes and the multitude of emotions, life still carries so much meaning and joy. I must hang on through the lows whether they are physical or mental because I am lucky enough to get the chance to experience the highs as only survivors can.