Can I just tell you how amazing it feels to take a shower without tubes, and get out and NOT have to immediately put aloe on my ass?? No fighting with the tube while I'm getting ready. The biggest thing I have to worry about is finding pants that fit. Kick ass!

If I didn't know there was a tumor in my rectum, I'd think there was nothing wrong with me. It hits me at odd times. All of a sudden I remember. I have cancer. I did radiation and chemo. There will be a major surgery soon. I'm going to have more shitty chemo. Usually I start thinking when I'm alone, like last night in the bath tub. Or when I wake up in the middle of the night. It's just so bizzare to think that this is my life right now. This is what I'm doing. I wonder when one gets used to this new life? When does it stop shocking you when you think, "Oh that's right, I have cancer."? It's a lot easier to ignore now that I'm not dragging myself to the cancer center every day.

I don't know. Maybe it's always shocking. Maybe you don't get used to it.

Lucky for me most of my day is spent being busy, doing such things as sewing and chasing kids away from the Christmas tree. It's easier not to think sometimes.

Too much reading!

In an effort to get more prepared for what's coming ahead, I've been doing some reading. I found some information and personal stories about the chemo I'll be on after the surgery. It's good information, and I'm glad to know it's out there, but I need to stop reading it. I'm freaking myself out. I *just* got done feeling sick, not being able to eat, dealing with the exhaustion. Thinking about doing a repeat of that, and maybe being worse off? Not all that fun. And keeping in mind that I was able to tolerate the radiation and 5FU better than the doctors expected, well, let's just stay positive.

I feel like I need to cram as much stuff into the next bunch of weeks as I possibly can. Seeing friends, getting some sewing done (yes, I feel like sewing!! I bought a new pattern too. Yay!), going out to the groups we frequent, cooking...in the back of my mind I keep thinking that I better do it now because 16 weeks of chemo might very well kick me in the ass. With the already hurried pace of the holiday season, this might not end well. I know I need to slow down, and yet I have a mental to do list a mile long. Good thing chemo brain keeps causing me to forget what exactly is on that list!

It's going to be okay. My way of dealing with things is to make plans and get prepared. If I can balance that with getting zen about NOT knowing what might happen, I'll be golden. Perhaps I should re-take up yoga?

For today, a trip to the bookstore is in order, and definitely some sewing. And I think that makes for an excellent day.

I'm free!!

This morning I went in to get the chemo pump disconnected. That's right, no more chemo pump! (well, for at least a month) The nurse was so funny. She asked me if I was going to go out drinking tonight. I laughed and said I wasn't sure. Then she asked how long I'd been on the pump and I told her 8 weeks. She goes, "Oh my god, I don't know anyone who has had the pump for THAT long! You better have a drink tonight to celebrate!" Hilarious, coming from a nurse.

So no more showering with the pump or sleeping with the pump or catching the tubing on things (like the vacuum cleaner...).

I cried after I left the cancer center. It was a hard thing that I did, radiation and chemo. I'm relieved it's over, but apprehensive that this isn't the end. It's not even close to the end, really. Sometimes I didn't know if I could do it, and I've had people tell me they couldn't get through it, that they couldn't handle it. I admire people fighting cancer, because we know you just have to get through it, you just have to handle it. What's your other option? Dying? Fuck that. I'm not going away that easily. So you take the hard path.

Anyway, today is a happy day. Tomorrow is Thanksgiving, and I know I have a lot to be thankful for. I hope everyone has an awesome time with family and friends. I will be drinking the wine. All of it. Hahahahahahahahaha.

I feel like I've been on this journey with blinders on, peeking out when I feel ready to tackle the next issue. Fortunately, I have Eric, who long ago researched pretty much everything there is to know about rectal cancer, treatment, you name it. When I ask a question, he knows the answer, or if he doesn't, he knows exactly where to find it. Something as big and life changing as cancer, it's so overwhelming. I know it's a lot for Eric too, but I'm grateful that he's able to suck it up and get us where we need to go.

So I don't even remember why or how, but yesterday I started reading stories about people with colostomies. There was a thread on colonclub.com discussing why there is such a negative reaction to colostomies, and many people shared their own experiences. Some were bad, most were good after the adjustment. I read about people who are just as active as they were before their ostomy, people who travel and swim (hello, snorkeling!), and have jobs and live life. Some websites were suggested, ostomyland.com and uoaa.org, so I dipped my pinkie toe in the water of what will be a huge change for me, for our family. One of the posters on the thread I mentioned suggested that perhaps fear of the unknown is what makes people so negative about colostomies. I would agree with this. Reading stories and information makes me feel better about the path my life is taking.

Would it be awesome if by some miracle the surgeon went in and discovered that the tumor had shrunk enough to save my anal sphincter? After what I've read about life without a rectum...I don't know. That probably sounds crazy. For a lot of people maybe it would be a no-brainer. Of course, anything BUT a colostomy. Perhaps I feel differently because when my doctor called me, when I stood outside the Oshkosh Library, he said, "You have rectal cancer. It will involve surgery and a permanent colostomy." I've had a long time to get okay with those facts. My doctor didn't beat around the bush or give any false hope. I appreciate that, as crappy as it was to hear. Oh I have my moments, my "Holy shit, I have cancer!" or my "Holy shit, I'm going to have a colostomy!"

Anyway, knowledge is power. So I choose to start gathering some knowledge. The sites I mentioned are helpful, in case anyone is interested in learning some stuff too.

Moving right along

I spent some of my morning making phone calls. One call was to the fry doctor demanding premarin cream. Okay, you all know me, and I was very nice about it. His nurse was nice too, she repeated back to me what my concerns were and emailed the doctor (he's at another center today). The doctor called me back, we chatted for a few minutes about the issues, and he sent a prescription for premarin cream to my pharmacy. It was kind of bizarre, actually, because I swear the nurse was more cranky about this last week. Maybe she was just having an off day, or just wasn't prepared for me to get snippy with her. Who the heck knows. Anyway, my vagina and I are happy this didn't turn into some epic battle for estrogen cream.

I also called my surgeon. Originally, the fry doctor offered to get the appointment set up and contacted the surgeon's people. The surgeon's people said they would schedule something in 2-4 weeks (this was around Nov 11th). The nurse said she could call again, and I said I would go ahead and call. So I left a message and hopefully they'll get back to me today. It would be nice to pin down a surgery date so I can start freaking out properly. Hah.

And the best phone call of all was some awesomely good news from my mom. Yay for good news!!!

My to do list is calling. I never thought I would be thankful to be able to accomplish things on a to do list, but I sure am.

My parents are visiting this weekend, and we had Vegan Thanksgiving last night! It felt so good to help cook a meal, and to enjoy a variety of foods, and it tasted pretty gosh darn awesome. So far the chickpea cutlets and chickpea gravy are not reacting the same way the bean burrito did. Thank goodness.

It was kind of emotional too. We started talking about the chemo I'll have after surgery. Just to fill everyone in, I'm looking at 8 cycles of folfox/folfuri, which means I'll go to the cancer center and sit in the chair to get infused. Then I'll take a chemo bag home with me for two days. I can disconnect it myself, and then I have a week off. I repeat this for 16 weeks.

At one point I told my mom I really don't want to go sit in the chair, and I started crying. I had been hoping I wouldn't have to go hang around the chemo area of the cancer center, but now it looks like I won't be able to escape that. Isn't it funny that I have more anxiety about going to sit in a chair than I did about getting my ass fried every day for 28 days? I have more anxiety about sitting in the chair than I do about the permenant ostomy I'm going to have. What is wrong with me? My mom asked what bothered me about the chemo area. I blurted out that everyone looks really sick, and she said, "Well they are really sick."

But I don't feel really sick like that. I don't think I look really sick. I don't see myself in the people sitting in those chairs. Maybe if I could identify with them it wouldn't be as bad. I joked about hitting up my doctor for some anti-anxiety meds, except I don't think I'll do that. There are enough drugs with enough side effects running through my veins. I probably don't need more.

So that's my confession for the day. I'm irrationally scared of the chemo chairs. I guess the good news is that I have 6-8 weeks to get all right with things.

Hey, want some good news??

Did I ever talk about Lynch Syndrome here? I can't remember. Anyhoo, because I'm so young for this type of cancer, it was suggested that we do some genetic testing to rule out Lynch Syndrome, which can cause colorectal cancer, uterine cancer, ovarian cancer...it's basically a big ball of cancer. Being positive for Lynch Syndrome would put me at a higher likelihood for those cancers. Eric and I sat down with a genetics counselor about two weeks ago to chat about my medical history, hoping to get some answers as to why I turned up with rectal cancer. The counselor was very helpful, and said the best course of action was to have the biopsy that the surgeon did tested at Mayo.

So we went ahead and did that. The studies came back normal, which, drumroll please....means I most likely do NOT have Lynch Syndrome. Yayyyyyyy!!!!

It was implied that if I did have Lynch Syndrome that I should have my ovaries and uterus removed, and I have to say, I was against that. I like my organs where they are, thanks. Now I don't have to stress about that! Of course I'm still going to be diligent with pelvic exams and such. But believe me, this is a load off my mind.

Yay for good news!!!!!