It has been five years today since I got the worst news imaginable....that I had cancer. Bad cancer. Aggressive and in a late stage. It was a moment of total fear and horror that I will never forget.
One thing I did not have was any symptoms.
If you have been reading my blog all along, much of this post will be repetitive, so feel free to skip to the last paragraph.
UPSC or Uterine Papillary Serous Carcinoma is an endometrial cancer, very different than uterine cancer. It is neither uterine cancer nor endometrial cancer, although is often referred to by both names. It is in a category of its own, unfortunately, which means that there is little information, few studies, and no colorful ribbons.
This is what I read when first diagnosed:
UPSC is an aggressive postmenopausal nonendometrioid uterine cancer that is often chemoresistant from onset, with low response rates, short response durations, and a 5-year survival rate of 18%
So in mid-2010, I started chemo, then radiation, and a March 2011 scan showed no evidence of disease (NED). This did NOT mean, however, that I was cured or no longer had cancer. I did and do.
Two other scans, 6 months apart in 2012, followed, both with NED. Four months after the second scan, I got really bad back pain. So I went to doctor after doctor, acupuncture, PT, massage, injections, hypnotherapy.....to no avail. My regularly scheduled scan two months later showed that the cancer was back. How stupid was I, not to have consulted my oncologist about this pain? Pretty stupid, but also very drugged for the pain.
My oncologist at Hopkins wanted to start chemo immediately, but I was hesitant. Didn't I want to get the cancer out of my body if possible? I had another, local gynecological oncologist whom I saw every few months (no, I had not told him about the back pain either!) so I took my scans and went to see him. He recommended that I have him do what he called "surgery with curative intent". Sounded good to me so I had this "big" surgery in fall of 2012. I did not do well afterward.....he had to re-position several organs and my body just was not the same.
Shortly after, I started chemo, sandwiched with radiation. My blood tests were repeatedly poor and I needed transfusions. I was hospitalized 3 times in 3 months for a total of 25 days. Endless vomiting and internal bleeding. I really was certain that I was going to die. But somehow, I pulled through and on one lucid day made two big decisions: to stop chemo and radiation (I had had half of the scheduled treatments at that point) and to change oncologists. If I were going to die from this monster, I wanted someone compassionate. This was in March of 2013.
At this point I could no longer walk, but got into PT for cancer patients and built up my body a little so I was eventually able to walk and resume somewhat of a normal life. The chemo had done something to my body that will never be "fixed" but at least I am here. Every day is a challenge and I am limited as to what I can do on a daily basis. I have learned to pace myself, which is difficult for an A-type personality to do. And I look fine, so people do not really know how much of an effort everything is.
I have another scan in a month, always a tense time. Six times since my last surgery, Bob has been able to text the word "CLEAR" to Laura as soon as the words were out of the doctor's mouth. I hope this time will be the same, but if not, I will deal with it. There have been huge advances in cancer therapy in the last 5 years, including immunotherapy. I am thankful for these years I have had to enjoy my beautiful grandchildren--years I did not think I would have. I may not be the most active Ammy they could have, but I am always here for them and love them unconditionally.