No, I haven’t started listing my quilts for sale yet. But if you’re interested in a pair of earrings made by Moi, today is your lucky day! I’ve got a bunch of new earrings on my etsy site (lisabeedesigns), and older earrings are on sale for $6 or 7! Plus, if you use the code APRILEARRINGS, you can get 25% off all orders of $35 or more through April 30.
My closet of shame has been growing more crowded lately, as I continue to begin new quilts without finishing older ones. So when I saw a group challenge to finish UFOs (unfinished objects) in one of my quilting forums, I figured I’d better take the hint and sign up.
Obviously it’s much easier for me to get carried away by new ideas than it is to complete those ideas into a fully functional battle station. Quilt.
For this challenge, each participant lists 5-10 quilts or projects they want to finish and then we have 3 months to try to get those finishes done. And if you do, everyone in the group sends you fabric! Cause that’s just what we all need. More fabric!
Here’s my list of projects.
1. Patriotic pinwheels – I made this quilt top at a guild retreat about 2004. Everyone else brought red white and blue fabrics. Not me. Need backing fabric, quilting and binding.
2. Purple and orange garden – This needs backing fabric, quilting and binding.
3. Purple, blue, and red garden – Needs backing, quilting and binding
4. Batik plus quilt – another oldie. Needs backing, quilting and binding.
5. Yellow and red color wash – started in the early 2000s. Need backing quilting and binding.
6. Green and blue color wash – also started in the early 2000s. Needs backing, quilting and binding.
7. HST trip around the world – recent top made from charm squares I received in a package from the lovely Hillary at Entropy Always Wins blog. Needs backing, quilting and binding.
8. Floral plus quilt – Needs a border, backing, quilting and binding.
9. Color fields, orange and white – Needs quilting and binding.
10. Clown barf quilt – This one was going to be a coins quilt. Now it’s going to be something different. Needs to be pieced and fully finished.
Which should I try to finish first?
I just got back from returning a few things at the mall. I was in the mall for less than 30 minutes, and it was early enough in the day that I was still “fresh”, and yet here I am now, tired and wiped out.
It’s a gorgeous, sunny day today, and on the drive over to the mall, I could see many places where I used to hike, and other places that I wanted to hike (Hello, Mt. Diablo). I get a glimpse of those places where I’m farther from the buzz of civilization, cars, people, etc.; where there are great views from hill top fields, and quiet paths through wooded valleys. And I just can’t get to those places. I mourn that loss on days like to day, especially.
All of this annoys me and frustrates me. I’m trying to figure out work arounds. I have a short path near my house that I love. Within 50 yards of the parking lot, you can find terrific views out over the hills. It’s relatively flat, and I can walk it when I need to be outside and trick myself into feeling like I’m somewhere far more remote than I actually am.
Getting out into the rest of the world remains difficult. Sure, it’s possible to run quick errands or get myself to a doctor or chiropractic appointment. But that trip to the mall – difficult. Spending an afternoon shopping with a friend? These days it would be nearly impossible to do without completely taxing my energy, if I could do it at all. A street fair with the family? It’s just not going to happen like this.
So, I’m trying to look for work arounds in this area, too. Of course, I already do most of my shopping on line, (Again, fine for the little things, but it means that I can’t use shopping as a social outlet.) What I’m thinking about now takes me well out of my comfort zone: getting a disabled placard for my car and getting some sort of walking support – rollator, transport chair, or wheel chair.
On one hand, I feel guilty about considering these options. I mean, on the face of it, if you just saw me briefly, you wouldn’t think that I’m sick. You wouldn’t think that I’m having trouble getting around. But spend an hour with me outside the house and you might see it. Even the thought of a disabled placard makes me feel guilty. There are obviously people who are worse off than I am who might need those spots, too.
And then there’s the feeling that maybe I’m just giving up or being lazy. Maybe I’m being a drama queen. Maybe I just want attention. (Wait, isn’t that what this blog is for? 🙂 I can walk a mile on a treadmill, why can’t I walk around the mall for a while?
I also worry about whether using a device would help or hinder my future self mobility.
But, what it all comes down to, is that I want to be out and about more. And right now, I don’t feel able to do more than short, relatively local errands. I don’t think that a placard or a walking aid would do much to help me go further abroad, but I do think they would allow me to do longer trips without totally wearing myself out. And, for right now, it’s not something that I HAVE to use all the time, but if I had it on hand, I’d be able to use it when I needed it.
I would definitely appreciate any feedback, especially from people who have chosen (or had the choice made for them) to use a walking aid, or from people who’ve cared for someone who uses/used a walker, rollator, or wheelchair.
A year ago today, I started bleeding and this whole cancer journey started. A year ago tomorrow, I got my diagnosis of kidney cancer, and the following day was told it was stage 4, and to not expect a cure.
Years ago, after I finished graduate school, but before I met Reil and had our two children, there were moments when I struggled with what to do next with my life. Although I was working, I didn’t have the constant structure of school – classes, projects and assignments, tests, my graduate assistant job, etc – and within the previous 3 years had achieved all of my educational goals: a BS in the sciences and a Master of Library Science. So, with less structure and no medium range goals, I felt a bit adrift.
In the year since my cancer diagnosis, I’ve experienced similar feelings. I can’t make long term goals, how long do I have?. I am hesitant to make medium or short term goals as well. Planning, in general, has been difficult, but not knowing how long I’ll be around makes some goal making feel silly. I find that I think about goals for our kids much more than I think about goals for myself.
This lack of planning, lack of goals, sometimes makes me feel as if my life now consists mainly of sitting around, waiting to die. And I struggle against that. I don’t want to be defined by cancer, defined by a terminal diagnosis. Yeah, even though that’s the whole subject of this blog. 🙂 Instead, I’ve found that falling back into a label that I used to use on myself has helped.
For many years in the 90s and early 00s, I made and showed quilts around the country. I showed in galleries and small and large quilt shows. I showed as part of a group and had individual shows. I sold most of what I made. I put a lot of pressure on myself to do better, more innovative, work. To be the next big thing in the art quilt world.
And eventually, I burned myself out. I stopped quilting, almost entirely. When we moved back to California from the DC area, I sold or gave away all but one box of fabric, culling my collection by about 90%. I just couldn’t deal with it. Didn’t want to deal with the pressure, internal or otherwise.
And then last fall, I decided to make a quilt. I went to Joann, bought some fabric, and started to work. Since then, I’ve purchased a lot more fabric. A LOT MORE. And I’ve once again embraced the craft that I used to love so much.
And you know what? This time it is so much better. I’m having so much fun. I make what I want to make, when I want to make it. I don’t worry whether it will be shown in a gallery or if someone will buy it or even want it. I’m not worried about where it will go when it is done. I just enjoy the time working on it. The colors. The feel of the fabric. The hum of the machine. The heat of the iron.
I don’t worry if I’m making anything original. In most cases, I’m not. I DON’T CARE. (Oh god, how good that feels!) I’m making something beautiful, if not to anyone else, then at least to me.
And I find that with quilting, I am giving myself goals that I don’t have to worry whether they’ll be achieved, if I’ll make it long enough. I hope to finish all of the quilts I’ve started – there’s currently about 11 quilt tops waiting to be quilted, and I start new projects every week. But the reality is that even if I get all of those finished, there will still be more to make. And I doubt I’ll time death, or more realistically, the point when I cannot function well enough to sew, precisely with getting all my projects completed. And that’s ok.
For now, it’s just good enough to be able to spend my days with one of the loves of my life.
I had blood drawn today, you know, my every other week blood draw (which is much nicer than doing it once a week, but still…) I’m used to the drill. I make appointments for the lab work, which means it takes me 5-10 minutes, even if there are 30+ people waiting. (Suckers!) I show them my Kaiser card and ID before they ask. I look away before they poke me. I joke with the lab techs and reception folks. Today it was “You don’t cook because you’re working all the time. I don’t cook because of cancer” to the receptionist, and because I basically fell into the chair, “Oops, guess I shouldn’t have been drinking” to the lab tech. Ok, so I won’t make it on the professional comedy circuit.
Walking out of the hospital, however, I just thought, “Damn it, I’m over this shit. Can’t I just be done with cancer?”
Oh, if only it were that easy. Why the hell can’t it be that easy? Can I find some emotionally healthy way to block out all of the cancer related stuff, and only pay attention to the non-cancer stuff in my life? It’d be a lot easier if I weren’t spending hours a day sitting on the toilet as everything I eat goes straight through me. (And side note, why the hell have I gained a pound this week when I’ve had diarrhea for the past 3 or 4 days?)
On the upside, another part of my lab work ritual is that I usually treat myself to a trip to the mini outlet mall across the freeway, and today I found a great pair of pants and a couple of pairs of sunglasses (to go with my new Farrah Fawcett hairdo).
I am continuing to jump back into life, and I think my shopping habit shows it. Over the past week, I’ve purchased a lot (almost all on line, because I’m still tired) – a bunch of fabric, some summer tops, odds and ends for the household, and just tonight I ordered my face cream from Macy’s. I’d been putting that purchase off because it isn’t inexpensive and because, frankly, I was feeling pretty grim about my future. But dammit, if I’m going to die, I’m going to die with the best skin I can have.
I had a bunch of girlfriends over for an artsy craftsy day yesterday. We spent a few hours making fused fabric landscapes. Definitely gave me a sort of high to spend time with them and to see all of the amazing work they did. I’d like to extend an invitation of quilting lessons to anyone who wants to learn to quilt. I might put you to work on some of my stuff, too.
I wish I could weave all of these various threads into a more coherent, cohesive post. But that seems to be how my mind works lately. In order to make sure I remember something, I often have to put down a thought or an activity half baked. It makes everything more scattered, especially when I have to try to remember to go back to the original thought or activity. And I often don’t remember until much later.
And I just realized that this Monday of last year, I quit that stupid ass job that was sucking the life from me, and I was re-evaluating everything that I was doing. I was excited for what I thought was coming – more school, new opportunities, etc. Just didn’t realize that everything would be turned upside down just two days later by the emergency room trip and the cancer diagnosis and horrible prognosis. But I think I’ve done pretty well over the last year, all things considered.
I feel a bit frustrated tonight. Miss M and I have an invitation to see a movie with friends tomorrow, and while trying to work that out, I haven’t been able to keep hold of the idea that she also has a birthday party to go to tomorrow. It keeps slipping away from me. My mind is like a sieve. I’ll remember something midway through doing something else, drop what I’m doing so I don’t forget the new thing, and completely forget to go back to the old thing.
I’m also agitated because I’d also been hoping to go to a quilt guild meeting tomorrow. I’ve been wanting to join a group, and the Saturday afternoon timing seemed like it would work well with my schedule. But then it turns out it’s in Redwood City, not Foster City, and that extra 10 miles or so each way pushes it from “it’ll be a stretch” to “I don’t want to risk it.” Plus, I’d planned to pick up our dinner stuff afterwards, but found that the actual meeting would end 2 hours before the pick up time. And so Saturday isn’t shaping up how I expected it would.
The other quilt group I was looking into is held on a week night in Oakland, so distance wise, it’s do-able, probably. But it’s in the evening, two and a half hours after my support group ends in Pleasanton. Lately I’m so wiped out after group, that I don’t think there would be time to get enough rest between travels.
I want to stand in the middle of the room, stomping my feet, crying “IT’S NOT FAIR!!!” I want to be able to do the things I used to be able to do – like drive 45 minutes to get to a meeting without worrying that I’ll over exert myself. I’m frustrated being stuck in a smaller sphere of living. I’m annoyed that even the little things wipe me out.
I’m doing my best to acclimate. I’ve been using Amazon for most of my non-grocery shopping needs. Waiting two days for a package is preferable to wasting my energy going to Rite Aid or the hardware store. I plan my days so that I have rest time between activities. I have to spend time planning so that I don’t waste my energy. I’m pretty sure that, if I contact people in the guild across the bay, I can find someone to carpool with to future meetings.
But I want to go tomorrow. And I just can’t find a way to make that happen. And it sucks.
I probably should go to bed.
I knew that I was feeling a bit lonely and a lot sorry for myself, and I knew that I had to get the hell out of that funk, and I figured that having people around might help me feel a little less sorry for myself, and a bit less lonely. But what the visit from my in-laws showed me was that companionship through out the day would drag me, yank me, bodily force me, into a happier and better state of mind. It’s so much easier to be dying when you’re sitting alone in your home, feeling tired, feeling pain. It’s much harder to do that when you’ve got people with you for much of the day, pulling you back into the world of the living. And, yeah, I feel like I’m living again, and what a thrill that is!
And of course, I’ve still got a litany of little complaints: I haven’t allowed myself to rest as much as I should; I’m not pain free; my gut is bothering me, and I’m spending too much time on the toilet; I still can’t hike. But for now, they’re just little complaints. They aren’t a death knell, rather just little somethings to deal with while I live day to day.
One of the best things about living is spending time with the people I know and care for. Beyond helping me avoid a pity party for one, it’s just so much fun. So I’d like to encourage people to come visit me during the day, if you’re able. Yes, I might get tired, but any physical exhaustion I feel is peanuts compared to the emotional boost I get from seeing my friends and family.
I’m really pretty good at setting limits in this area, so don’t be afraid you’ll be intruding. If I’m not up to a visit, I will say so. If I get too tired during a visit, I will say so. But what I’ve found is that I haven’t had to cancel any visits, and it generally takes a few hours to wear me out. (Don’t take that as a challenge!)
So come on, folks, don’t make me beg! (Besides, I’m only here for a limited time. bah dump dump!)
I can’t really expect to get stronger by just lying around the house, right? So after coffee with friends this morning, I went next door to the gym and spent a little time on the treadmill. And I mean little. 20 minutes and I recorded 6/10ths of a mile. Yeah, that’s about the speed of a tortoise. And at the end of it I was wiped out. Went home and laid down in bed for a while wiped out.
That’s my starting point.
Now, because I spent some time weeding the garden, and even more watching my mother in law plant a bunch of plants for me (can you say awesome!), I am sore and tired, and just want to collapse on the sofa.
But it’s a good sore and tired. It’s a sore and tired that comes from activity and endeavor. Even if it was just a small amount. Much better than the sore and tired that comes with self pity and woe.
“I’d be afraid of the pain.”
Thats what my friend from support group said, when we talked about getting spiritual guidance. She was worried about the pain.
Surprisingly, I hadn’t even considered the pain that could come from a death by cancer. Especially surprising given that I’ve been dealing with a not insignificant amount of pain the last month. Not enjoying it either.
In general, I feel mostly at peace with the idea of dying. Sometimes I wonder if I am too resigned to the idea. I am kind of a realist, so I feel it is important for me to accept what is happening – I have cancer. It will kill me eventually. But at the same time, I feel positively enough about my life that I’m not rushing to meet death. I want to milk the time I have for all it is worth.
Some days the pain makes that difficult. Tuesday was a bad day. I started taking painkillers soon after waking up, but never quite caught up with the pain. I went to my other support group that day and just felt pitiful and sorry for myself.
The days since have been much better. My inlaws have been visiting and I’ve found their companionship to be both enjoyable and comforting – much more than I ever would have expected.
I haven’t done much creative work this week, visitors and all, but it seems like I’m starting to get out of my emotional funk, and that feels terrific.
After reading a blog post about solo hiking today, I spent a smidgen of time feeling sorry for myself that I won’t be able to hike the PCT, and instead started planning where I’ll take my inlaws tomorrow for a picnic lunch. My body won’t let me do all I want to do, but it can’t stop me from getting out there. Not yet.
I’m still not bothered by the idea of a painful death. Maybe I have faith in the state of palliative care. Maybe I just like to ignore the idea. My main worries about dying lie not in the process I’ll experience, but with those I’ll leave behind. I continue to grieve for my kids and for not being able to be the mom I always thought I’d be – one like my mother, always there to support her kids, no matter how grown up they are.
Maybe I should look into some spiritual guidance in that area after all.