Busy Weekend

We just survived another very busy (but lovely) weekend. Chris’ siblings were in town this weekend to help celebrate his birthday, and we packed a lot in. Surprise party on Friday night (THANK YOU YOUNGSTOWN FAMILY), bowling party on Saturday, home-cooked five course meal on Sunday. Plus tons of driving around and sightseeing.

I also got to meet my brand-new niece, Brooklyn Marie Bean, Sunday night. She’s beautiful. If it wasn’t such a pain to get photos off the camera, I’d post some up here.

We had such a good time. Thank you to everyone who participated and made it a very special weekend!

Scan Results

It’s been a crazy week!

I had a scan last Tuesday, meeting with the doctor and infusion on Friday, then flew out on Sunday for a day of appointments at the Mayo Clinic on Monday. Back now, and ready to report the news.

It was all good!

The scan showed no changes since two months ago (which is when I went back on my full treatment regimen). It looks like the Avastin I’m receiving really makes a difference in tumor activity. In addition to that, the surgeons at Mayo pronounced my hip to be “beautiful.” There’s been no slippage of any of the parts, and they think the activity they see is all healing bone stuff. They’re even pleased that I’m still mostly on two crutches, and think I’m making good progress getting down to one.

We went for a drive after the appointments, and Chris took me out for a really nice dinner that night. If you ever find yourself in La Crosse, Wisconsin, I highly recommend The Waterfront Restaurant. One of the best meals I think I’ve ever had. Surprisingly good.

Last but not least – happy birthday to my dearest love and best friend. I’m so glad I married you before anyone else could, and every day with you is special.

October passing by

I’m sorry for the long silence. I really have no excuse, now that I’m unemployed. I just didn’t know what to write about.

I know most people in the world look forward to that day when they will no longer have to earn a living, and can live quietly in retirement, doing those things they always wanted to do. It is nice to not have to rush off to a job every morning – especially on those mornings when I’m not feeling well. But my days are long and slow, and it can actually get a little boring. If I could only walk and get out of the house easily! Of course, if I could walk and get out of the house easily, I probably wouldn’t now be unemployed. Catch-22.

I’m enjoying my meals, though. I’d almost forgotten how to do that. I used to always eat breakfast and lunch in rush, hunched over my computer, going through emails or to-do lists or tasks or what-have-you. Now, meals have become a big part of my day. I anticipate them. Stopping whatever I’m doing. Sitting down. Maybe reading or watching something online while I eat. A big pause.

The other thing I’m having to get used to is not multi-tasking. I’m very good at doing many things at once. But if I do that now, I run out of things to do by noon. So now I do one thing at a time, and I focus on it. Intently. Which can drive me crazy, but I’m learning to appreciate it.

I have another scan coming up next week. Two months since the last one, and we’ll try to gauge how things are progressing. The tumor marker from my latest labs was up again a little, which is very distressing. But it’s still within the normal range, so (as a friend frequently reminds me) no need to pick out the funeral flowers just yet.

And I think . . . I think . . . that walking is starting to get a little easier. I’m spending more time every day on one crutch, and it’s not hurting. I am starting to feel optimistic about this. Maybe I really will walk again one day.

Follow Up to Below

Okay. I’m done feeling sorry for myself for the day. Just came back from hanging out at one of my favorite cafes where a KEXP intern gave me a free cup of coffee, and am now headed out for a happy hour and movie with the young survivors crowd we’ve become friends with. I’m not stuck at home if I don’t choose to be!!!

This Week

This has been the quietest week I think I’ve ever had. I only went out a few times with some dear friends and my mom. Otherwise, I just stayed at home, resting, reading, sleeping, eating.

I miss how easy it used to be to go out and do something. Just to head out the front door and take a walk. Left on my own, I barely ever make it down our front steps. I’m starting to feel like a hermit.

Being disabled is really, really hard.

Homemade Spaghetti

2 jars canned homemade spaghetti sauce
1 eggplant
2 bell peppers
Farmers Market spaghetti noodles
Farmers Market sausage
A whole lot of freshly grated parmesan

Saute eggplant, bell peppers and sausage till soft. Add jars of sauce. Boil noodles in separate pot. Drain noodles. Combine sauce and noodles in oven-friendly dish. Stir in 2/3rds of parmesan, and sprinkle rest on top. Stick in oven at 350 degrees for 15 minutes.

Homemade goodness on a damp, chilly fall day!

The World of the Unemployed

I haven’t been unemployed since I was a junior in high school. So far this has mostly felt like an extended leave of absence. Except I won’t have an inbox to return to.

I’m actually keeping pretty busy. Sleeping a lot, of course, but busy when I’m awake. It’s a fairly full-time job just to manage my appointments and insurance, let alone take care of household stuff. It makes sense to me that we evolved with a “split-the-work” way of doing things – one person taking care of the home and the other out there foraging for sustenance. No wonder people feel overwhelmed these days – everyone’s out there foraging AND taking care of the home.

I’m picking my French back up. I’m doing my PT exercises every day. I wouldn’t say I’m signicantly stronger yet, but I got back on the exercise bike yesterday for five minutes. First time in months I’ve felt up to doing that. At this rate, I might be walking again in, oh, maybe five or so years. Sigh.

But that’s the point, right?!?! Rest and recuperation. Resting and recuperating is a whole lot harder than one might imagine. It’s hard for me to get out of the house on my own, so I go a little stir-crazy. But I’m also really tired, and often don’t want to try. So I have to force some effort and exertion all at the same time. In other words, I want to get out, but I don’t want to make the effort, but I need to . . . . yada, yada, yada. I feel like I’m at least becoming more active around the house. Not doing a whole lot on one crutch yet, but there is a sense that that’s right around the corner.

We head back to Mayo at the end of October for my 12-month (aka, 11-month) check-up. We plan on talking to the docs about the latest scans as well, and getting a second opinion on how serious the activity in the hip is.

The wind is blowing the tree right outside my bedroom window right now. It’s nice to have the time and energy to sit and notice it. I’ve been doing a lot of that these last two weeks. Noticing how my body is doing each day, each moment. Am I getting achy? Tired? Allowing myself to lay down when that happens. Actually feeling somewhat refreshed in the morning after a night of sleep (I’d forgotten what a refreshing sleep felt like).

A slower pace is . . . nice.

The Next Great Adventure

I’m not officially done at work, but I’m close.

I’ve been having a harder time of late – being in too much pain, getting sick – a rather all around undependable employee. It was decided that maybe the way my body has been behaving, I needed to stop working sooner rather than later.

So I seem to have stopped working, for the  most part. I haven’t been in for a full day since last Tuesday.

I feel like a retiree with too much time on her hands.

It’s really good, though. Throughout the day, whenever I get tired or achy (which is a LOT), I can go lay down till I feel better. I’ve been feeling stronger and less wiped out at the end of the day, so I’m actually awake to talk with my husband in the evening. I need some serious recuperating time, and finally my body is getting it. Now I just have to find some brain activities so my mind doesn’t go insane.

Gearing Up for Getting Sick

After receiving the results of the latest scan, the doctor told us that should things stay on this trajectory, he expects me to go back on heavy treatment in the next 4-12 months.

So Chris and I are gearing up for whatever this next stage may hold. Having advance warning is rare in the cancer world, and we want to take advantage of it.

We’re putting together our “team” – meal providers, appointment attenders, Aubrey babysitters, grocery store runners, etc. All those little things we’ll need help with if and when I get really sick again.

We’re also trying to take advantage of this “healthy time” by doing some fun things. We were planning on a trip to Italy next summer. Since next summer might now be too late, we’ve moved it up to this Thanksgiving. Plans are set for a 10-day trip in late November. We’re trying to get out and see friends, go for dinner, go for walks. All the million things that make life worth living and will be really hard for us when I go back on treatment.

I am really scared of what will happen when I go back on treatment. But since we know it’s coming, we have the chance to organize our lives in a way that makes the hard stuff as easy as possible to handle.

That’s the best we can do, and more than most people get a chance to do.

Scan Results

Friday was a really tough day.

We had gotten used to hearing great news at the doctor. It wasn’t horrible news this time around, but it shook us up.

There are signs of increased activity in the hip. But it’s so confusing down there because of surgery, that we can’t really tell if its just perhaps bone healing, or if its really tumor activity. But the tumor marker in my blood is elevated, so we have to assume the activity is cancerous.

We’re not changing my treatment yet, because Sam doesn’t want to make me feel that bad without solid reasoning that it will at least extend my life. But he anticipates that if things stay on this projectory, we’ll be taking treatment up a level in the next 4-12 months.

I’m so scared. And mad. I HATE this disease! You hear that, God?????  I HATE THIS.

I had an infusion right after our appointment on Friday. Chris climbed into the hospital bed with me, and we just held each other and watched the Spanish infomercial channel. I had one of my favorite nurses taking care of me, and she cried a little bit with us.

But then the sun was shining when we left. Doesn’t that always happen? On the day when you feel your worst and lowest, the stupid sun is always shining, and people are out and about, reminding you that life hasn’t ended for anyone else but you. And that it won’t, and that it’s not supposed to.

Friday evening I was reading a book, and the author quoted a friend of his (who, incidentally, was dying of metastatic colorectal cancer in his lungs). His friend said, “The thing to do is not to give way to fear in a way that reduces the possibility of life.”

Not to give way to fear in a way that reduces the possibilities of life. Whatever I have left, whatever is in front of me, this is how I want to approach it. I don’t want to be terrified. I want to savor the hell out of every moment. I want to spend time with the people I love.  And when the end comes, I don’t want to be scared of it. I want to feel like I fought it, and I never let cancer win because I never let the fear take over.

Easier said than done, huh?