Inlyta sucks

The past 10 days, since I started taking Inlyta, have been some of the roughest in my life.  I’ve had increasing amounts of fatigue, so much that I figure I have about 3 hours a day where I manage at about 50% of normal, and the rest of the time is spent lying on my bed quietly, or sleeping.  Earlier this week, my hips began bothering me more than normal and a finger joint began to be very painful.  This weekend, the pain has entered every point of my body in the hours after taking my pill.

And so, I’ve decided to stop taking Inlyta.  I’ve sent an email to my doctor, and am waiting for a reply from him, but I’m not taking tonight’s pill, and won’t continue after today.

At my last appointment, he said that we have lots of other options, so I’m sure I’ll have another drug to start on soon.  And hopefully it’ll be one that I can truly live with.

Advertisements

In the middle of the night with cancer

I’m lying in bed, unable to slow my brain down enough to sleep. Funny, since I’ve spent the day unable to muster the energy to do anything at all, mostly just lying on the sofa or my bed.

I’m scared. That’s what it all comes down to. I feel unsettled and scared, just like I felt after my diagnosis 10 months ago.

I’m not scared of dying, not really. Ultimately it is just a process, and when my body is done and my consciousness fades away, I’ll be alright. Null. It won’t matter to me anymore.

But I am afraid of not living. Of missing out. Mostly on my children’s lives. I had put those fears aside for a while and just focused on living. And did a good job of it.

Pazopanib can work for some people for many years. But not for me. And now the timeline has all moved forward. And I suddenly feel a sense of urgency to get done the oddball things I feel need to be done. All this on a day when the new medication has kicked my ass. Keeping busy is one of the best ways I know of staying in the present, and not dwelling on cancer. And I’m just too exhausted to do anything.

I want to work on my quilts. I want to clean out my closets. I want to frame and hang artwork that’s been sitting on shelves for years. I want to make sure I have a cozy nest of a room so that when days like this hit, I’ll be able to pamper myself a little. I want to plan a trip for the family, but don’t have the brain power to make the decisions necessary.

If you’re local and want to drop by at some point and help me do some of the things I want to get done, I’d love to see you.  I’ll even try to make sure I’ve showered.

 

Birthday blues

Yesterday was my birthday, and it kind of sucked.  My family did their best to pamper me and love on me, but despite their efforts, I felt like crap all day.  Sluggish, tired, fatigued, depressed.  In the afternoon, the three of them went off to see a movie without me (but with my blessing) because I didn’t have the energy to go.  Instead, I stayed at home and cried.  It was the end of a long week that, although it had a lot of great points, generally showed me how life isn’t the same any more.  I’ve tended to reject the idea that I’m “fighting” cancer (primarily because who wants to fight against their own body?), but I’ve found that what I’ve really been fighting to achieve is a sense of normalcy.  And, unfortunately, in that fight, I feel like I’m losing.

We started the week with a short trip to Portland.  It really is a 10 hour drive, and that exhausted me so much that I wasn’t able to enjoy my time with my family, my brother and his girlfriend as much as I’d have liked.  We did a little bit of sightseeing – Voodoo Donuts (forget my last post!) and Powell’s Books – and then I was wiped out, needing a nap.  Luckily, we’d rented a very comfortable apartment that we could return to, letting the kids play games with their awesome uncle.  But that seemed to be the rhythm of the weekend, actually the whole week, and probably weeks before, too.  Do a little bit.  Be wiped out.  It was just much more noticeable when there were people and things I really wanted to see and do.

We spent Thanksgiving with a group of friends.  It was a lovely day, but I was fighting a massive headache and extreme fatigue.  Luckily, in this group there are people who love to talk and tell stories, and so I didn’t have to exert myself much – just stay awake and enjoy the fun.  And even that was difficult.

The lack of energy is difficult for me to handle, in general.  It’s one thing to not be able to hike long trails.  It’s another to have a walk around the block leave me tired.  And entirely another to not be able to have the energy to be able to get off the sofa to work on a quilt.

I’ve dealt with depression in the past, and I can see myself beginning a spiral down.  And so, I’m re-evaluating my vitamin situation.  I’m trying to make sure I get outside for sun exposure and a little bit of exercise each day.  I’m probably going to try to increase my anti-depressants.  I might try to get back in to talk therapy.  I’m hoping that these efforts will pay off by leaving my head as healthy as possible, even if my body lags behind.

But, man, it all just leaves me tired.

 

A sopping mess

Last week I went to my watercolor class, ready to jump back in after a missed week when the instructor was away.  Half an hour into class, I suddenly had to sit down to rest.  I felt weak and tired, and put my head on my arms on the table, almost like a rainy day “Heads up, Seven up” game from elementary school.  In no time, sweat was dripping down my scalp to my face, nose and onto the table.  My clothes were wet, the table soaked.  I couldn’t get up to clean things up.  People noticed.  Marcia, who is also in my cancer support group, came over to check on me.  Other students asked if I was alright.  I tried to play it off as no big deal because I was uncomfortable with the attention.  Ultimately, the fact that I didn’t know if I could stand on my own, let alone carry my supplies to the car and drive home, forced me to call my husband to pick me up.

I found the whole experience mortifying, scary, and humbling.

I hated being in a setting that is not cancer related, where I’m just Lisa – the fledgling painter, the prospective hiking patrol volunteer, another parent at the school – and suddenly having cancer thrown into the limelight.  It’s not that I want to hide the cancer, but that I don’t want to lead with cancer.  I don’t want it to define me, but in so many ways, it continues to do just that.

Going from feeling good and being excited about class, to a shivering, weak mess in a matter of minutes was frightening.  I was thankful to have Marcia, who knows some of my history, there to support me.  But what if this happened at the grocery store, driving my kids somewhere, on a solo hike?  It took me a few hours of sleep, followed by a good lunch to bring me back to a semi functional state.  I guess a nap in the forest wouldn’t be such a bad thing, but the helplessness would be scary.

The thought of having to adjust my life to fit these changes in ability is difficult to bear.  I love my independence.  I crave time to myself.  Not always, but regularly.  I’m not helpless; I can take care of myself – it’s always been a mantra of sorts.  But maybe not so much any more.  With this shift of mindset comes the multitude of other disappointments.  Ideas that hadn’t quite gelled into goals or plans must be discarded.  It seems quite clear that I won’t have the energy or ability to obtain the knowledge, achieve the fitness, or spend the time needed to reach these possible goals.  I recognize that these may have been pipe dreams in the first place, but I still feel the loss of the hope, the wish, the dream.

For now, I’m trying to make adjustments so that, as much as possible, I can live close to the level I’ve been living, and continue to do the things I’ve been doing.  That might mean more naps and saying no to even more “obligations,” and focusing on the things that I can still accomplish, even if that day the list is

  1. Get out of bed
  2. Spend time with my family
  3. Go back to bed.

How YOU doing?

Lately, lots of people have been asking me how I’m doing.  They’re not asking in a “Hey, how you doin’?” way.  They’re asking in a putting their hand gently on my shoulder and gazing into my eyes “How ARE you doing?” sort of way.  I’m finding that to be a difficult question to answer, because I don’t really have an answer that works.

“I’m doing fine.”  Yes.  True.  But it doesn’t acknowledge the emotional and mental work I’ve done to get to a point where I can give a nice, bland answer (and mean it.)

“I feel good.”  Yes, also true.  Most of the time I feel good, even great.  (Is that what they expect to hear?)  Ok, things have changed – I can’t breathe as well as I used to, but mostly that just slows me down a bit.  I’m having hot flashes all the damned time (Sorry, not cancer related.  Does that count?)  I’ve also been dealing with a tweaked shoulder, which caused some pain.  My chiropractor (and all around amazing woman) was able to fix that.  But really, I mostly feel good, healthy, able to walk long distances (as long as they’re not up hill.)

But what is still difficult to talk about is that I’m stuck with this stupidass cancer for good.  There’s no take backs, not setting the clock back, no going back to the good old days.  And even though I’m at a point where I can say “I’m fine,” and mean it, if you scratch the surface too hard, you’re going to get to the really gritty stuff.  I’m pretty sure that most people who ask don’t want that gritty stuff.  When they hear it, their eyes tend to glaze over, they try to change the subject, offer encouraging words.  And right now, I’m pretty sure that I want a break from the gritty stuff, too.  I’d like to take it easy for a little while, to the extent that if they called up with a place at Commonweal tomorrow, I’d probably turn it down.

It would be much easier if people asked, “What have you been doing?” because though the answers are going to be similar each time they ask, they’re also going to be much more comfortable for all involved.  And besides, that will give me an excuse to show off my sketchbook, invite people on hikes, or talk about the books I’ve been reading.

The most wonderful time of the year

OK, everyone take a deep breath.  Hooray!  School has started!

This summer was not terrible.  This summer was not great.  It just was.  There was a lot of learning how to care for the kids while caring for myself.  Lots of reflection, therapy, getting through the first wave of dealing with having cancer, accepting death (while doing what I can to keep it at arm’s length!)

And now the kids are in school and my days can once again be about me – what a luxury.

I want to set some goals for the semester to try to keep myself moving in positive directions.

  • Keep on hiking and walking – at least 3 times a week, but more would be just fine.
  • Sketch/paint/other art daily
  • Write at least 3-4 times a week, with at least 2 blog posts each week.
  • Start cooking again – at least one meal a week from scratch.  (And by scratch, I mean that it is OK to open up cans or boxes.  I just need to start planning my own meals again.)
  • Daily smoothies, or most days.
  • Meditate/Guided Imagery – daily?

Dang.  When am I going to have time for my trash TV?

Also, as I write this, my mother is at the UCSF Medical Center, where she is undergoing surgery for her renal cell carcinoma.  They aren’t taking her whole kidney (since she only has one – born that way), but will remove the mass, which I think is a slightly more complicated surgery than I had.  So, please, keep her in your thoughts for both of us.

Ch-ch-ch-ch-changes

Thanks to being off the pazopanib for a couple of weeks, my hair is coming in brown again. So I’m going to end up with those stripes I’d joked about after all. And now, instead of freaking out about how to deal with hair color maintenance, I’m interested to see how my hair will look in a few days, a few weeks.

I started bleeding again this week. I didn’t get upset. I didn’t email my doctor in a panic. I just double checked that it wasn’t in my urine this time, but was, in fact, my period.

I have difficulty hiking up hills now. I’ve decided to not worry whether it’s because I’m still out of shape or because the nodules in my lungs make it hard to breath. I just stop, enjoy the view, catch my breath, and keep going.

Just about anyone who knows me well knows that I haven’t often lived in the moment. There were always things to worry about, plan for, mull over to death. This happened. What does that mean? How will it affect me in the future. Ad nauseam. I’ve just never been that good at putting thoughts down.

When cancer hit, I worried. I worried about my kids, my husband, my cat. How was I going to die – in a hospital? at home? On and on.

Now I seem to be at this place where I feel like I’m getting used to this life with cancer. It’s not I feel there’s a new status quo, and I understand it and am used to that. Rather, I can look at how things are in just a given moment. “My roots are brown, interesting.” “I can’t breathe, so I should rest for a bit.” It is more restful to think this way. I can experience something and then put it down, move on to the next moment.

I know some of these moments to come will include grief and pain and fear. And that’s ok. Those moments will come, and I will handle them. But not right now. Right now I have other moments to deal with. The moment where I’m writing this post. The moment when I’ll draw in my backyard. And by letting go of the moments that will come later, I can just focus on the now.

By the way, if you’d like to see some of what I’ve been doing, check out my Instagram account.