In mid-December 2016, I had my eighth "every six months check-up" to confirm I was still cancer free. It came back clear, so I am happily that much closer to having kicked this disease to the curb. I am one of the lucky ones as I had a rare but curable cancer due to its high aggressiveness and it being caught in its early stages, see diary here. And while going to the hospital every December to get a flexible sigmoidoscopy, office visits in June to be checked with a hard plastic “ray gun”; and then visits with my oncologist every March and October is a hassle and can be scary reminders, the most terrifying part of this whole journey was at the very beginning and that's what this diary is about.
When I was diagnosed with anal cancer in early February 2013, it was a bit of a surprise. Off and on since late November I had dealt with a literal pain in the ass that came and went about once per week. It wasn't consistent in pain levels ~ sometimes just a strong tightness, sometimes it hurt too much to directly sit. It would go away when I took an Advil which was usually at night and mostly for discomfort. Twice, over a two month time period, I had blood in my stool. However, given that I was in my early 50's, had other symptoms of menopause, I had been spending a lot of time in my car, sitting in front of the computer... I put it down to age and my sedentary habits. I was also (cough) in denial.
To counteract my symptoms, I walked more. I stood instead of sat. I drank more water and started some glute exercises just in case it was my middle-aged butt that was causing the problem. Since I now had insurance, I went to a nurse practitioner; no reason to see a doctor as I didn’t have one and was in perfect health according to → me.
She said I was perfect on paper, all my vitals and blood work were great, but she was concerned about the blood in my stool. The very next day I received a call from a local Gastroenterologist office who wanted to schedule me for a preliminary appointment and then a colonoscopy. I could do it that week to fill in a cancellation, or wait for a month as the doctor was headed for a vacation. I hemmed and hawed and decided to fill the cancellation.
When I met with the doctor, we talked about my health and my symptoms and he explained how there was a 1% chance of my having cancer. I said I thought I had an internal hemorrhoid; he thought it was an anal fissure. I didn’t know what an anal fissure was, but I certainly didn't want one by the sound of it. The next week when I went in for my colonoscopy, I discovered I didn't have one; instead, I had anal cancer. Great.
And so started the medical machinery towards an official diagnosis. While my thoughts were still hung up on “what the hell just happened??”, all my medical peeps were working to discover “how far has it traveled??” And when that sank in, THAT, that right there is when the absolute fear sets in. It swirls through your mind at night and fogs your thoughts during the day. If only I had seen the nurse sooner. If only I had paid attention to my symptoms sooner. If only I’d eaten more blueberries. If… if… if only…
It’s amazing how with a cancer diagnosis you become hyper-alert to what the members of your medical team do and say around you. You’re looking for a clue, any cue to know whether you’re going to live or die. And the things you learn — things that you never really wanted to know.
Talking with the CT tech who’s all Chatty Cathy until she does the CT scan and then doesn’t say another word. Why not? Is it all through my system and she’s afraid she’ll give it away?
Talking to the PET Scan guy on the way out to the mobile scanning unit. Laying there as the sugar and isotopes zip around so they can get a good picture. (Apparently, cancer just loves sugar ~ makes it all fluttery and stuff for the scans to read). Meanwhile wondering what the diagnosis would be if I had called sooner. Worrying about my parents; at least my sister is still around.
Receiving an 8pm phone call from my oncologist because the PET scan showed “something” of interest in my uterus. The vaginal ultrasound showed I had uterine polyps which had to be biopsied along with some uterine lining. Ouch, by the way. Pleased that they turned out to be benign for which I had to have surgery, but still.
Getting a chest x-ray and hearing muttering between the techs in the back room until one sticks his head out and asks if I’m still wearing my bra. Thank god, yes. We all laughed at that one when the picture came back clear.
Finally, the results are such that the lab techs are arguing over whether I’m either late Stage 1, or early Stage 2, but it hasn’t traveled. Huge sigh of relief because this is it, this is what we get to work on killing. This is so minor compared to what could have been. And that is what I want to make sure you hear when I say: Yes. Yes, I get it. Yes, it’s totally scary to think that something is horribly wrong, to think you might have a horrible disease, to know that you might be physically and financially in danger. But please. Go sooner rather than later. Later is worse on ALL levels. You don’t want to be saying to yourself, your family, your critters… if only. So please. Go. Just go. Just do it. Just see someone. More than likely you don’t have cancer, but if you do, please believe that the sooner you know the better. The better the choices. The better your chances. The better your quality of life.
One last anecdote. A year after my initial diagnosis I had my second follow-up exam. As I was getting ready to leave the hospital room I made a comment to my mom that the diagnosis the year before had been the worst day of my life. The two remaining nurses both spun around and (almost) shouted: “NO! That was the best day of your life because you came in and caught it early. You should be thankful.” Okay. Message heard. Attitude changed. I was. I am. I will be. So please, I want you to be thankful too. So go. Just go. Just do it.
For those interested in Farrah Fawcett’s battle with anal cancer, click here.Contrary to rumors about her not wanting to do chemo for fear of losing her hair, I believe she took the appropriate medical protocol at the time; she just caught it too late.
Monday Night Cancer Club is a Daily Kos group for anyone who has cancer, has a loved one with cancer, or who has questions, issues, or information to share about cancer, including clinicians, researchers, or others who have a special interest and can help to educate our readers. We have many different members who fit all these categories, sometimes more than one at a time. Please share if you can, or just listen; there is plenty to learn just from reading our extensive catalogue of past diaries and postings. All are welcome to use this group as a resource. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to cover physical, spiritual, emotional and cognitive aspects. While most diaries focus on a specific topic or area relevant to cancer, each diary is also an Open Thread for sharing concerns, announcements, and information. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.