Coming back

Sleep isn’t going to come soon. I’ve taken 4 doses of my cancer medicine since we came home on Friday night, and it’s already causing pain. My bones and joints ache, especially my elbows and my thighs. I just took a Norco, so hopefully there will be some relief soon. I just wish I’d thought of it sooner. Pain management is all about cutting it off before it gets bad. 

It is maddening to have to be back on these pills again. The stupid little rust colored tablets.  I felt so alive and comfortable and almost energetic while on vacation last week. I couldn’t move very well because of neuropathy and dizziness, but there wasn’t any pain, so it was just the issue of working through my unsteadiness. (No small feat, but again, not painful.)

I am once again feeling the anger that was building up in me before our vacation. But that’s not how I want to live. I want to be light and easy.   It doesn’t come naturally with this medicine, though. 

Reil and the kids drove a couple of hours north today to meet up with my mom. As I was kissing them goodbye, I had a sudden fearful flash of “What if there’s an accident, and they all die?” which was just as quickly replaced with a calm: at least I’d be able to stop taking the meds without feeling any guilt about how much it would shorten my life. 

That tradeoff sucks. I have to choose between living well or living a little longer.  We don’t know how much longer (Statistically, it’s about a year longer, but who among us is a statistic?), which makes the choice that much more murky.

For now, though, since my family is all safe and alive, I’ll focus on ways to cope.  With the pain, with the fatigue, with my lessening abilities. My first step will be marking a date in my calendar when I can take another vacation – from the kidney cancer treatment. 

  

Walk and Roll

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.

The good and the bad and the cancer brain

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.

Ugh, frustrating.

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.

Not able.

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.

The Lisa Show

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!)

How do you measure your life?

On Friday, I had a phone call with my oncologist.  We discussed the ins and outs of re-starting the Inlyta.  (I’ll take my first (second first?) dose in a few minutes, after I cut the pills in half.)  He hooked me up with the palliative care team at Kaiser; I’ll meet with them on Tuesday, and hope to get help with a number of things including pain relief and  fatigue relief, as well as (I hope) exploring how to make as much of the rest of my life as possible.

The other thing we talked about was my prognosis.  In my email to him, I’d asked to discuss this with him on the phone, and he was willing to do that.  He approached everything as statistical, which was slightly frustrating because I want to know what’s going to happen with me.  Of course, he can’t give me that information.  I know that he has to deal in statistics, not crystal balls.

So here’s the low down.

Statistically, if I were to go untreated, they’d expect me to live about a year.

Statistically, people who take Inlyta averaged about 2 years after starting Inlyta.

He was quick to point out that the latter statistic includes people who make it a month, but also people who keep on going on for years.  (And for those who haven’t read it, I highly recommend Stephen Jay Gould’s essay, The Median Isn’t the Message. )

On one hand, I’d been preparing myself for the first number to be 6 months.  On the other, I was hoping to hear a statistic of a few more years than that, so a little bit of relief and a bit more disappointment.  But on the whole, I feel more grounded with this news.  Once I’d heard that the pazopanib wasn’t working any more, I felt very adrift, unsure of what to expect.  Being given some numbers to work with helps me to put everything into perspective, whether it’s dealing with side effects, planning vacations, spending time with family and friends, figuring out what needs to be done before I die.  I’m alternately crying in the shower and happily making plans for what I want from my life.  (Christmas in Hawaii?  CHECK!)  Mostly, I’m attempting to get fully back into the positive state of mind that I’ve had.

Oliver Sacks just wrote an essay in the New York Times on learning he has terminal cancer.  Much of what he wrote resonated with me, particularly this excerpt:

I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.

He writes, also, of gratitude and feelings of privilege, and I recognize those feelings in myself.

I often hear people talk of a journey with cancer as a battle – obituaries that state “She lost her 5 year battle with cancer”.  Since my diagnosis, I’ve not been able to apply that framework to myself.  First of all, there’s that saying, “Don’t pick a fight you can’t win.”  I know I’ll lose this one eventually.  But, more to the point, if I spend my time battling cancer, then that takes time and energy away from what I want to do – live.

I want to live long and large and loud.  I want to live with my family, on trails in the forests, sitting on the beach, reading a book, watching a movie, cuddling with my cat.  I want to laugh with my friends, see places I haven’t seen before, make art and crafts that please me and others, make art and crafts that everyone hates.  I want to leave a wealth of memories for the people I’ll leave behind.

And I want to thank you all for staying on this journey with me.  It’s not a journey that any of us expected, and I recognize that I am the only one who has to stay on it.  So I thank you for your company and support.  It means so much to me.

Back on the horse again?

My doctor finally got back in touch with me.  (Usually he’s much more prompt.)  He really encouraged me to give Inlyta another chance to see if the side effects will settle down, this time on a smaller dose.  I told him OK, but with two caveats:

  1. We start with a set time frame – if this doesn’t work within X weeks (I’m thinking 3), then we drop it and move on to the next therapy.
  2. I get palliative care to help with the pain.  The marijuana does help a bit, but not completely.  And if it’s any indication – before Inlyta, I was using it once or twice a week.  On Inlyta, it was as much as 4 or 5 times a day.

There’s a third caveat, but that has more to do with my friends and community, and not at all to do with my doctor.  I know this line of treatment will knock me out and wear me out, and leave me unable to do much.  So, for that, I’m going to need support, and lots of it.  I know I’ll be tired, but I’m also going to need to see people and talk to them.  So, texts and visits would be greatly appreciated.  Phone calls, too, though I’m not sure what my phone skills will be.  If you want to come by, but aren’t sure about whether I can do it, please just ask.  I will tell you yes or no, and I will mean whatever I say.  And yes, you may wear me out a bit, but I’ll have plenty of time to nap;  your company will help more than you might expect.

On the up side of it all, I feel really good right now.  No pain beyond what I normally had, being a 46 year old out of shape person with cancer.  My energy levels are much higher, though I still feel a bit of fatigue, as if I were getting over a bad cold or the flu.  So, that’s good.

Also on the up side, I bought some fabric today.  I needed a little fabric for the binding of one of the quilts I recently found again, and when I walked into the store, I was blown away by all the pretties.  So, I blew most of the last bit of money that was on my state disability card on a few cuts.  In away, I think this is a good sign for my mental health.  I don’t NEED this fabric (no, really, I don’t!  shhhh!), and purchasing it means I’m looking to the future, and being able to use it.  I’m seeing a future!

Pretties