Getting On With Living
In 1998, I was diagnosed with a cancer - adenoid cystic carcinoma - that is slow growing (even indolent) at times, but can be aggressive or even turn that way after some time. It has a propensity to metastasize to the lungs, primarily; but can also go to the liver, bones, and brain.
Some people who are diagnosed with this rare cancer go through surgical removal and radiotherapy and go on to live a long life. Others, are re-diagnosed many years after the initial diagnosis (past that magical ‘5 year’ cure marker), and their disease comes back with a vengeance. Still others have a rediagnosis and live with the cancer in their lungs for many years. And some never get past that first diagnosis. Their cancer is the fast-growing variety and they perish very quickly.
I bring this up for a reason. As many of you know, I host a number of support groups for rare cancers. And one question that I am asked repeatedly is how do I get on with ‘living’ again, when I am so afraid my cancer will come back? How do I get past the fear? I can only share my own story with them.
I went through surgeries and radiotherapy treatments for over a year. It took a number of surgeries to remove my cancer and surgical removal is still the best (maybe only) treatment that works on it. Then I went through almost another year of biopsy surgeries for benign lumps and reconstructive plastic surgery and recovery. So, my ‘initial voyage’ was lengthy.
I had started to think of myself as a lifetime cancer patient. And then, it all stopped. Boom! And the medical professionals expected me to just turn around and forget about it. I couldn’t! Ever lump, every bump, scared me. And the slow progessive recovery made me wonder if I was ever going to really live again. And, slowly, I started getting past the fear.
Then, I was told there was a growth in my ovary. But, ‘they’ would watch it. I was scared again. Breast cancer survivers have have higher percentage of ovarian cancer than ‘normies’. And I sat and worried and waited for the next year’s checkup. Slow growth, but growing. I was still told not to worry because it was a ’simple cyst’. The following year it turned questionable and kept growing. The next year it was ‘larger’ (the doctors word, not mine). Further tests showed it had turned complex, but I was still told not to worry. After all, the uterus looked good. The next year, my ovary had been ‘eaten’ (not my word either) by this ‘mass’ (yeah, that’s what they called it now).
God, how was I supposed to go through this. The oncological surgeon wanted me to have just the ovary removed. In fact, he insisted on it. Thank God my gynecologist was also a surgeon and understood my ovarian cancer risk and my own fear. He did the surgery that I requested - remove it all! Including the cervix. And thank God we did because from what he removed, I am sure it saved my life (whew, again!).
And ‘they’ are still following some nodules in my thyroid. One is .7 cm. and of a complex structure. I am told they cannot biopsy it because it is not large enough. At 1 cm, they will. And ‘they’ want to know why I am fearful of it. My original rare cancer is normally found in the head and neck regions, but sometimes found in the breast and other areas. Go figure!
I might sit back and wonder what clinicians feel like when they are diagnosed with a rare cancer, but I can’t. You see, I have a good friend who was a doctor and has been fighting leiomyosarcoma for a very long time. It has been attacking her body, over and over again. And she fights it with all her might.
She is afraid, sometimes. I am afraid, sometimes. So, when you ask me how you are supposed to get on with living. I don’t know, life just has a way of becoming more demanding and, somehow, you do. And how do you get past the fear? I don’t know because I don’t. I learn to live with it, just like some of my compatriots learn to live with their cancers, alive in their bodies.
Cancer is not a chronic disease, yet! I hope, for my grandkids sake, that it will be someday. But, my experience as a rare cancer advocate has taught me that it kills, sometimes; brutally debilitating sometimes. And I will always take the ‘lumps and bumps’ seriously. No matter what ‘they’ tell me!!