I was going to title it, "Butt me no Butts", but(t) I wasn't sure it would get past the censors. However, you probably see where I am going here.. Anal Cancer.
Like everyone else, cancer wasn't on my bucket list and as I've been a vegetarian, almost a vegan, for at least the past 15 years I admit I was pretty surprised. Especially as I eat as organic as possible, minimal processed foods, and I try to keep the level of chemicals in my house and life as low as possible. I also thought that the lack of cancer in my parents and grandparents would provide some type of shield, but as I found out through this process, if only it were that easy to find the trigger.
The initial symptoms were mild enough. In November 2012, I occasionally noticed a sharp pain when I sat down. However, it had been my best year yet at work and I'd been sitting a lot and I was just into my 50's, so I assumed it was age and lack of exercise. By Thanksgiving, at times it was hard to find a way to sit comfortably - and then days would go by where there was no pain at all. I allowed this lack of consistency to let me believe that it wasn't anything serious.
In mid-December I had blood in the toilet after a bowel movement. That was scary and absolutely got my attention. By this time, the original pain had disappeared and was replaced with a tightness at the base of my spine, but I still didn't think it was anything serious. So, like a lot of other people, I got on the Google and decided that I probably had an internal hemorrhoid. From that point on, there was no other blood except for a thin line along one edge of some stools.
In January of 2013 I saw a Nurse Practitioner for the first time in years as I hadn't been able to afford health insurance prior to October the previous year. The Nurse Practitioner referred me to a Gastroenterologist and I received a call from his office the very next week. By this time, I had no symptoms at all other than the sporadic thin red line. Fortunately, when I was given the choice of seeing the doctor later that week or to kick it down the road a month when he was back from vacation, I albeit reluctantly, said let's do it this week and get it over with.
My initial appointment with the Gastroenterologist was great. He said my symptoms were very similar to a fissure and that my odds of having cancer at this age and with my health - perfect on paper - were about 1% and scheduled me for a colonoscopy early the next week. The rest is, as they say, history.
So what caused it? Survey says: HPV was more than likely the cause, as it is in 96% of all anal cancer cases. It's one of the rarer cancers, only about 7000 cases per year in the US and up until recently, the main target has been women in their 60's. Unfortunately, the number is on the rise (in fact, when I started this diary a year ago, the number was 6000 cases per year in the US) and younger women are being diagnosed.
In the scale of things, my treatment was pretty short once it started. Six weeks which included radiation Monday through Friday, and two weeks (96 straight hours each week) of chemo through an implanted pump for the first and fifth week. While it was all pretty nightmarish, I knew I was very lucky. The cancer had just transitioned to Stage II, it hadn't metastasized and I had an 80% chance of the treatment actually curing me. If it didn't work, I'd have surgery to remove the cancer along with my anus and I'd go to a colostomy bag. There is a possibility of it recurring in the first two years after treatment and there is a chance that at some time in the next 10 years it will show up in my liver or lungs; however, I'm going to proceed on the "been there, done that" theory and move on.
So, that is the question of this diary tonight: How does one move on? Does one ever move on?
I'm one of those people who laugh at the wrong time, usually when things are most serious. Fortunately, I can laugh at myself - which I did a number of times through this process.
On Monday, the first day of treatment, I went to Infusion to get the chemo drip started - after that, I was scheduled across the street for my first radiation appointment.
By this time I'd had my chemo port "installed" and some random and benign polyps removed from my uterus. I'd been tattooed for proper alignment with the radiation machine and I'd created a "form" so I could lay down in the same froggy position every day for six weeks (yeah, the jokes just write themselves). By now, five weeks after my initial diagnosis, I was charged up and ready to get going with my sippy cup of ginger tea, wrist bands to prevent nausea, crackers, and a "Let's Do It" attitude.
I'm taken back to my room and the infusion nurse was quite the card. She tells me that she isn't going to start until she's had her scone - otherwise, she'd be cranky. Okaaaay. She finally comes into the room and starts an IV drip, then leaves. As I'm sitting there, my head starts whirling and my body starts twitching and I start thinking, OMG, I can't do this. This isn't going to work. I can't do this chemo for 96 freaking hours, this is just too horrible. But I suck it up and try and stay calm.
About 10 minutes later, she comes back with a bunch of plastic packets and takes one out and hooks it up and starts it dripping into my IV. I ask her, "What's that?" she says steroids and anti-nausea drugs. I ask her, "What's been dripping so far", she said saline. Hm. Well, at least I got the initial freakout out of the way.
There were moments like that all through my treatment, but most of it is a blur. During the latter part of week six, I ended up in the hospital as I was dehydrated and neutropenic with fevers. They were worried about infection, which I didn't have, but that was actually the five best days as I could stop worrying and let the professionals step in.
When I was done with chemo and then the final week of radiation, and after the blisters on blisters healed enough, I said "Yay, I did it, back to normal life". And that's when the fear started. I'd wake up at night in the middle of a giant ball of fear. That's all I could feel and think, was fear. The more awake I became, the further it would recede and I remember reaching out to it to try to grasp it and see where it came from. Well, of course, it came from having cancer, but I hadn't realized that I would react like this. I went through treatment, it was supposed to work, all indications had shown that it had... why this, why now? I should be happy it's over with, I should be feeling relieved.
Fortunately, a month after I was back to work, I injured myself while helping a client move furniture and ended up at an acupuncturist's office. He asked me what I was doing to keep the cancer from coming back, and my response was, I don't know what to do as I don't know how I got it in the first place. And there it was; there was the basis for my fears. While with his and a naturopath's help I feel that I've made some positive changes to prevent recurrence, and while my "fear balls" have receded; I still have nights where I'm startled awake without initially knowing why and I still have days where I can't stop worrying that the cancer is back so that I have to just stop and focus my brain to override those thoughts.
So, as I asked above; how did you move on? Now that you are post-treatment, how did you get past the emotional repercussions or did it become the new you? I'd love to hear what worked for you and how you worked with the transition. Thank you for reading.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. 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.