The long and winding road. (from Oct. 15th, 2009)

In some ways... many ways the journey will never really be over. Not entirely. I feel like the beginning of David Lynch's "Lost Highway" when the road just keeps going on to who knows where, and all there is is a line on the highway.

I'm trying to get my life back on track. I've started working out, because, while I wasn't in super great shape before, sitting around taking it easy has made me flabby. But as much as I want it all to be behind me it's not. I still have to be careful not to tire myself out. And I'll have good days and bad days. Mostly when I get to that point where I feel a bit tired and want to stop what I'm doing something- washing dishes, making the beds - I have to actually sit down and take a break. And I have to not think of myself as lazy because of it. I have to let it be okay that I am still recovering. And I have to let it take as long as it takes. The feeling is coming back in my boob around the surgical site and that means that it hurts more than it did. If I run I have to hold my boob. That's just the way it is. sometimes I expect my body to be like it was. But it never will be. I just have to accept that. In fact, my entire right side is weaker then the left. I've been working out using Wii Fit and my right side is consistently worse in everything. I have to accept that that may never get all the way better. I have to accept "the new normal" as my radiation oncologist said yesterday. He was talking about breast self exams, but I think it applies to everything. And I'll never know if it's over. I guess when I stop having to go for mammograms every three months I'll feel more like I'm at the end. But the journey is on going. That's another thing I have to accept. (from January 2009)

...

I have been away from this for a long time. It's sometimes hard to want to write. It's hard to admit to myself that I am still dealing with it and that the journey isn't over. Will never be over. I mean theoretically, the end of a cancer journey is when cancer kills you. So hopefully that won't happen. Unless they come up with a pill or a treatment that will guarantee that the cancer won't come back. But I'm not holding my breath for that one.

I've passed a year since ending chemotherapy. I've gone back to work. Part time at first and now full time and as much as I like to keep up a brave face, it is really hard. The cancer comes up sometimes at work - it has to, when you are talking to people about hair inevitably your own hair comes into the conversation and the fact it's newly curly needs explaining. I find it weird to tell people because their immediate reaction is to be all serious and it makes some people uncomfortable but I don't think of it as being all that serious. Also, the days are long and my body is so tired. I feel like I will never not be tired again. It's so deep down. When I was pregnant and getting to the end, I thought that was as tired as a person could ever be. But it was nothing. Before when I thought I was doing well, it was because I didn't do anything all day.

And I know my family takes issue with me being back at work. That they blame Kurt or hold him responsible. The reason I decided to go back to work was that Kurt hated his job and there was nowhere for him to go in it. It was also only a matter of time before the economy caused his job to no longer be there. So I told him to quit. That I would go back to work and he should go to school to do what he wants. He's going to school for broadcasting and so far he is loving it and I know he is going to be awesome at it. But my family thinks he is making me go to work, and that he should just get a job and be the breadwinner so... I don't know... so I can sit home and do nothing? We couldn't survive for much longer on just his salary anyway. I would have had to go back to work sooner or later. And there is no job that he could have gotten that would support us without going back to school.

But it just makes it so much harder for me to think that my family is not supportive of what we are doing over here.

(sigh)

My life is forever different. My body is forever different. In the summer I was having some concerns about my heart. One of the possible risks of chemotherapy is a 1% chance that it can damage your heart. So I had a bunch of tests. They didn't seem to turn up anything but I am still not convinced. I have this fear that I will die in my sleep and that Kurt will get up and go to school in the morning and not notice that I am not just sleeping. And then I'll be dead and Indiana will be stuck in her crib screaming and crying with no one to come and get her until Kurt comes home from school. I know that it is kind of a silly fear but I have it none the less.

My mortality is this thing that is out there in front of me now, and no matter how well I do, no matter how much my tests come back clear I will always be a little bit afraid.

Where to go from here... (from Nov. 28th, 2008)

My friend Devon told me recently that I am her hero. That's a weird thing. It's hard to feel like a hero when your hair is coming in more white than it was, when you still have huge dark circles under your eyes that seem like they'll never go away, when the vein in your arm still hurts, 2 months later, and when you look in the mirror and see that this experience has definitely aged you. I remember not all that long before my diagnosis looking in the vanity mirror in the car, with the benefit of natural sunlight, and remarking how I was doing pretty well for almost 32. I'm probably still doing pretty well, but I can see the difference.

Dev's mom was going through chemotherapy at the same time as me. She had a very rare form of leukemia and was not doing well in the fight. And when the doctors told her there was nothing more they could do, she gave up. It's hard to imagine that your mind has that much power over your body. Her doctors gave her 7 months, and she died with-in a few weeks. On the other hand, my mom's friend Emmy was given two years and she's been surviving for 20.

I cried a lot when I heard about Dev's mom. We had chemo together a couple of times, and I think it was a weird and sudden dose of the fatality of cancer. It's really weird when someone is there and then suddenly they're not.

Even though my cancer treatment is over my cancer journey is not. I don't know what will come next. And I don't know how much longer the journey will last. Radiation was so fast and uneventful that I barely have reason to talk about it. It has made my breast quite tender, and though the scar was beginning to regain some feeling, it has gone all numb again. And it looks pretty ugly. It's better than it was. But it's all red and peely. Like the worst sun-burn you ever had. And I think I'm still trying to be tough. I refused to get the prescription ointment for it until I was really in a lot of pain and anything touching the breast hurt. I want my life to be back to normal but I don't know what normal is anymore.

I still haven't bought a new bra.