Colorado Rocky Mountain High

Today is my day for feeling alive!

We’re  in Steamboat Springs, Colorado. I took my last dose of Inlet on Thursday, and I’m feeling terrific.   I’ve got energy.  My feet are unsteady, but they don’t hurt.  The dropped metatarsal is taken care of with shoes and inserts. And the corn and deep blisters  aren’t causing any pain, or have gone away completely. 

This morning we took the gondola up the mountain, and hiked the nature trail up there.   It was only a mile, but it gave us lots of great views of the mountains and Valley. There were wildflowers of all colors (my favorite remains the columbine).  And it was relatively flat and easy to shuffle along. 



It was such a joy to be out on a trail again. Even with kids complaining about the bugs and the sun, and with not being able to rely on the placement of my feet, I was able to get into that blissful state that hiking provides me. 

And if that wasn’t enough, we spent the afternoon inner tubing on the Yampa river. It’s a very nice run, with lots of good dips and rapids. Afterwards, we went back to one of the areas we’d seen on our way down. We played in the river there, diving in, swimming the rapids. The water was very brisk, in temperature and spirit, but it felt wonderful to be out there, just playing!

The kids have already convinced me that we need to go again. Who am I to argue?

And, as a testament to how good I’m feeling – I’d been planning to make a run to the dispensary, since marijuana  is legal here in Colorado (and I wasn’t going to risk transporting on the plane).  But I haven’t felt the need to use since I’ve been here.

Once again reminded that it’s not so much the cancer as the treatment. I’m just so glad I can take these breaks. 

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To Do List

I’m here in bed, with my daughter lying next to me. She couldn’t sleep earlier, but now she seems to be doing just fine. I’ve been reading my book, but realized I need to make a list of things. 

1. Pick up the kids’ Camp Kesem medical forms from the doctor and send the check for 4-H camp. 

2.  Figure out the state unemployment / SSI snafu. 

3.  Schedule time for writing for the next few days. And pick up another notepad. I just write better that way. 

4.  Contact UCSF and Stanford about donating my body when the time comes.

We started talking about what I wanted to be done with my body before I went in for my surgery. I was OK with cremation, as long as my family dealt with my ashes in a timely manner. I love my aunt to death, but I just found out that she’s still carting around Nana in her trunk – a decade later. No.  I don’t want that. 

What I’d really love is to be sent to a body farm. How cool to be used for science like that – rotting out in the open, or in an old car, or maybe submerged in a swamp. Romantic!

Unfortunately, most of the body farms are much further east, and require the family to arrange and pay for transportation of the body. And the cheapskate in me just can’t accept that. 

But both the schools I mentioned will accept bodies  and even arrange transport, etc. If you live near enough (and I believe we do).  

So, on my list for things to do tomorrow, or Thursday, or sometime after we get back from Colorado, is to get the ball rolling on that. 

I think Reil said he’d be more comfortable if I didn’t end up at Stanford, that it would feel weird to have me there next to his work. But how else will I keep tabs on him after I’m gone?

OK. UCSF will be the first pick. 

 

Shoes and books

Finally a little love for Kaiser. After my last post, I contacted the Oakland podiatry department directly, and spoke with an amazing woman, Belinda. She set me up for a visit on Friday. Just like that. How amazing!

At the appointment, I told the doctor how this corn has been painful for a long time. He looked at my feet, pressed around a bit, asked which actions hurt, and told me it wasn’t the corn. I have a dropped metatarsal. He recommended orthotics, which I could buy in the pharmacy. $50 later, I had a pair in hand and limped back out to my car. 

I got home, slipped them, and my feet, into a pair of shoes and stood without pain for the first time in months.   Truly miraculous.   I almost cried, it was such a relief. 

I’ve had about a day and a half now of walking with the orthotics (I also purchased a pair of sandals with orthotics built in), and I remain amazed and grateful to be mobile again. Now that the acute pain is gone, I notice the neuropathy more – sort of a constant burning and tingling. It’s a bit annoying, but also something I can cope with.  My feet are very tired at the end of the day, which isn’t too surprising, since they’ve not been used much lately. And I have to remember that even though the shoes are old, I’m still breaking in the orthotics.   Overall, I’m quite pleased with how that’s worked out. 

After my post about work last weekend, I had a number of people suggest that I write a book.  My ego was certainly plumped up because of that, and I’ve been doing a lot of thinking and a little research about memoirs since.  I am starting to get some ideas of structure and arc that might work. And I’ve started doing a little non-blog writing.  It may all add up to nothing, but in the meantime, it could become an excellent excuse for me to escape the kids and hide out in a coffeehouse this summer. 

Just a little help. 

Kaiser. Why can’t I just love you?  Why do you keep making me hate you?

Yesterday I went in for an appointment with the podiatrist. My feet have been killing me. It’s part the corn that’s been hanging around for months (since January, at least), and part what is probably neuropathy.   My expectations weren’t leaning to the miraculous (no pain at all), but much more to the realistic  (a little relief so that I can take short walks in Colorado).  However, all those hopes and expectations were dashed when I arrived and was told that I didn’t have an appointment that day. They’d see me on JULY 15th. 

The first available appointment was more than 5 weeks out from when I’d requested one. Like that’s going to do me any good at all. 

It’s yet another example of why I don’t feel all that supported in dealing with the side effects of my meds. It’s like I’m going this all alone. Kaiser is useless.  The doctor up in Humboldt?  I have no idea what’s happening there, but after two emails about issues with no response, I’m not sure what our relationship is. 

And, yes, I get that I’m moaning and wallowing, and not being as proactive as  maybe I could. But, my feet hurt. My legs hurt. I’m knackered. My tongue hurts. My hair is falling out. Did I mention I’m just wiped?

I really wish I had someone I could turn to, with little issues or big, and get some help. 

That’s all. 

I will say, though, that the medicine that my oncologist prescribed for diarrhea does work well, and with no bad effects. So at least there’s that. 

Mad

Along with feeling a bit afloat lately, I’ve also been feeling pretty mad the past few weeks. 

I know. I’m sure some of you are saying “Well, it’s about time, Lisa.”. But, better late than never, right?

Today at our family support group, we found out that one of the fathers had died in the time since our last meeting.   His wife, who was a much more active part of the group than he had been, shared  a bit about his last few days and his death. It was, at the same time, comforting, sad, informative, and scary. There was so much value in having her share the experience, but it also brought up so many difficult emotions for everyone there. 

There are a few of us in the group who are facing our mortality, and it’s only a matter of time before Reil or one of the other spouses shares a similar story. 

But, damn. I don’t want that story told about me. Not in that family focused group. Not so soon. I want my kids grown and out in the world. Doing their thing.  Reality though. Probably not gonna happen. 

And while I’m hoping to put death off for as long as possible, I find I’m also kind of spinning my wheels in this middle land.  Not dead yet, but not fully living. Certainly a little too close to “just waiting to die” for my comfort.  I feel like I did after college graduation – suddenly without short or long term goals. Adrift.  So I’ve been trying to figure out what kinds of goals I can make for myself that I can achieve in the hours that the kids are at school, and Reil is at work. That keeps my brain active, even when my body can’t be.  That allows me to chart my own time against something else than one day closer to dying. 

And maybe it’ll be something that loosens up the anger in me, too. 

Work

I’m sitting in a hotel suite with six other women right now. We’ve got various projects spread out on the tables in front of us  – scrapbooking – both family and business, crochet, knitting, catching up on billing, doing homework.  In between stitches, cropping, notation, etc, we’ve been catching up on our lives. Kind of crazy, since we all live within 3 miles of each other, and have a serious coffee date each week. 

But life gets in the way. One of us started full time school recently. Others have work schedules that have gotten crazier. And I’ve been stuck at home on my sofa. 

I’ve found myself getting a bit jealous of my friends as they talk about their jobs, especially Cyn, who has just jumped into a very intense computer engineering and start up program. She’s pushing herself in exciting ways that are similar to (but much more concrete and high level) than what I’d been hoping for when I quit my job just before my diagnosis.  They’ve all got so much going on, though, and it is exciting to hear about, even if the little green monster rears its head. 

Once again dealing with redefining myself. I realized that, although I don’t have a traditional job, and although I haven’t been able to put much (OK, any) work into it lately, I’ve got the chance to work on my art. And that’s pretty great. Especially when I can sell and show my work. 



I sold two quilts this week, which is awesome, I think. And I’ve joined the Hayward Arts Council, and will show a couple of quilts in a show later this summer.  Two quilts are in the county fair. There are exhibition opportunities later in the year. I’m working on getting cards made of my work, too, to sell in the gallery, and small matted pieces. 

So I’ve got things going on. Now if I could just pull my ass off the sofa to make more artwork.