End of the year update

I hope you all had a merry or a happy whatever winter holiday you celebrate.  Here at the missing kidney household, the mood was less festive than previous years and definitely more lazing around in jammies all day.  (Hey, I’ve got cancer.  Don’t judge!)  Luckily, we did have a not so little anymore elf that pushed us to decorate, buy a tree, etc., this year.  Her name is Miss M.  She bossed us all into making sure lights were up and that we wore happy smiles on our faces at all times.  Seriously, though, neither Reil nor I were particularly into Christmas this year.  The holiday joy was hard to find;  we really just wanted to nap through most of the season.  It’s been a long, hard year.

On the up side, though, I took a week and a half long break from my cancer meds, and that helped immensely.  I’d reached a point where all I felt was “Why bother?”  The side effects were wiping me out.  Two days into the break, I felt like a huge weight had been lifted from my body and my soul.  I’ve been back on the meds for almost two weeks now, and I still feel good.  I’ve been telling my family and my friends to remind me in a few months that if I’m feeling poorly, it will be ok to take another break.  But for now, I feel good, and that’s enough.

I’ve been going a little overboard with fabric shopping, but I am getting a lot of quilting done, so I feel I’m justified.  Plus, the fabric is so pretty!  If you’re on my blog’s homepage, there is a link to my Instagram account, which should show some of what has been keeping me busy.  I hadn’t really missed quilting for the 5 or 6 years when I wasn’t doing it, but I am very happy to be back into it.  I’m looking forward to the new year, and starting up my watercolor class again, too.

So, really, not a lot going on.  But I have been able to spend quite a bit of time with old friends and extended family over the past two weeks.  I’ve been doing things I enjoy.  I’ve got very little stress.  Not bad for living with stage IV cancer, huh?

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Cancer’s hard, y’all

The past couple of weeks have been the most challenging, physically, health wise, since I had my operation.  At various times, I’ve dealt with neuropathy, joint pain, nausea, diarrhea, hot flashes, weakness, and/or fatigue.  I have had to adjust my life to deal with these side effects by resting, taking additional prescriptions, having other people carry more of the load.  I was so glad to have my dad visit during the past week, as he took up most of the driving duties – a huge relief, especially since my car has a manual transmission, and driving and shifting has become painful.

I’m trying to deal with each of these issues with grace and patience, but that doesn’t always happen.  It is best for me if I try to just accept that this is how I’m feeling right now (and that’s true if I’m feeling good, bad, or anywhere in between), and to acknowledge that how I feel tomorrow, the next day, 20 minutes from now, may be totally different.  And maybe it’ll be a day where I need to just lie on the sofa watching House Hunters International and bad movies.  Or maybe it’s a day where I can hike a few miles.  And either one is ok.  Because it’s a day, right?

Because of all these side effects, though, I’ve decided to go back down to two pills a day.  (I’d moved up to three last month between my trips to Colorado and Washington.)  I had a scan last week, and the results continue to be good.  The same day I met with a new GP, who was astonished by my blood glucose levels and suggested that I might be able to get off diabetes medicine.  We decided, though, to just change meds to something that is less of a stress on the kidneys.  So, all things told, I’m doing well, even if sometimes it is just hard and painful.  And poopy.

Going with the idea that I need to take care of myself, today we finally got off the pot and bought a new (to us) car for me to drive.  It’s got automatic transmission, heated leather seats, and is definitely the swankiest car I’ve owned.  I don’t have to shift any more, and my ass will be warm and comfortable.  I think I’ll live in it.

 

Half a year

Six months ago today I sat in the urologist’s office and listened to her tell me I have kidney cancer that has spread to my lungs.  At the time, everything turned upside down, and none of us really had any idea what to expect.  I certainly couldn’t place any bets as to whether I’d be here 6 months later.  But here I am.  And to be sure, there’s still a lot of uncertainty.  I haven’t got any sort of clue what to expect – for life span, quality of life, etc.  My gut says I’m probably going to go along for a while with a high quality of life  Until I don’t.  I don’t know how long, but at least I’m measuring it by time periods longer than a day or a week.

This has been one of the most tumultuous 6 month periods of my life.  (How could it not be?)  But, in some ways, especially since I finished therapy, it’s also been one of the least tumultuous.  Almost a little boring.  Not my life, but the whole cancer experience.  Sometimes I  struggle to find things to blog about, because there’s just not much to report.  Although I visit the hospital about once a week, it’s generally for something innocuous – support group, blood draw, pharmacy pick up, blood pressure test.  Sometimes I even have scans.  I also email my oncologist from time to time.  Yesterday I asked about upping my dosage of Votrient.

See.  I told you.  Snoozefest.

Meanwhile, the rest of my life is going well, and feels full.  I take a watercolor class on Wednesdays.  I have coffee with friends on Tuesdays, and try to do lunch with one or more friends each week.  I meet with Jule (chiropractor to the stars) once a week.  I hike a couple of times a week.  Last night I joked to a friend that I just don’t have time for a job!

I feel relaxed, not stressed.  I’m becoming very good a kicking stress to the curb, and am doing my best to avoid personal drama (though it sometimes pops its head in.)  And sometimes, I cry a little, but not often or for very long.  It reminds me of when I was pregnant with Jake, and every once in a while I’d throw up.  Just a little, usually with no warning, and rarely with any other feelings of illness.  The tears happened last night on my way to a get together.  Feeling fine, driving a long,  then Bam!  a few tears, and back on my merry way.

But I’ll shed no tears (except in joy) for making it to my 6 month post diagnosis mark.  Instead, I’ll add another tattoo to my wrist, and pack my bags for another retreat next week.

Woo!  Look at me go.

Update

Late Tuesday night I got home from my Live by Living trip to Colorado.  I’ll write more on that later, when I’ve been able to process all my thoughts and feelings about it.  For now, I can just say that it was an amazing, wonderful trip.

Coming home, I feel like I’ve been dropped in this strangely foreign world once more, and have to readjust.  I haven’t had time to sit back and reflect as I’d like.  Instead, my days have been filled with carting the kids to school, volunteering in the middle school library,and running around to various appointments.  (You know, all the normal day to day things for the parent of tweens and teens.)  I’m writing this post quickly so that I can make it to an appointment across the bay in Palo Alto later this morning.

I have written about my troubles breathing, and before I left, things seemed to get pretty bad on that front.  Climbing the steps to our front door would leave me winded, as would chasing the cat across our (not large) back yard.  I didn’t have much respite from breathing issues when I was in Colorado – although the air was lovely and clean, there wasn’t much of it at 11000 feet.   I do notice a slight positive difference now that I’m back down at sea level, though I suspect that won’t last for much longer.

Before I left, I talked to my doctor about the breathing problems, and he brought up the possibility of heart failure caused by pazopanib/votrient, my targeted therapy drug.   One of my appointments yesterday was with the cardiology department at Kaiser, where I had an echocardiogram to check my heart.  I still need to wait a few days for results, but I’m hoping that it won’t be the cause of the problems.

I’m not sure what I’d like the cause of the problems to be – most of the possibilities that come to mind aren’t pretty.  I’m much more worried about how my breathing problems will affect my quality of life than I think I’ve let on.  Strangely, I don’t feel worried about it affecting my life span, just my quality of life.  As I get more information, I’ll continue to update.

Scanxiety II

Cynthia met me outside the hospital ER entrance, and sat next to me on the bench.  We enjoyed the warm sun and the breeze that cooled us down just enough.  Then it was time to head in to radiology.

A CT scan is really no big thing.  Compared to an MRI, it is a piece of cake – you ride the platform back and forth through the big whirring doughnut.  Unlike an MRI, it takes just a few minutes, and would only bother the most easily claustrophobic.  And still, having Cynthia there in the waiting area to hold my hand (figuratively) and make me laugh (literally)  made the whole trip easier.

Because of course it isn’t the scan that worries those of us going through this.  The scan is easy.

Dr. Shek called me the next day.  I’d actually been able to put the phone call out of my mind for a little while, so that when he called I was taken by surprise.  I rushed to answer, all the while issuing small prayers (to what?) for good news.  And good it was.

All of the lesions and lymphs in my lungs had shrunk!  The larger ones had dropped almost 50%.  Some of the smaller ones were almost unnoticeable.  Dr. Shek was very pleased with the results, as was I.  He told me that I can get my lab work done every other week now, which will help my arms heal up between blood draws.

On one hand, I am cheering for myself.  Things are looking good!  Great, even!  The anxiety level has dropped, and I can relax.  But on the other hand, I wonder whether I’ll ever be able to fully relax or be able to get cancer fully out of my thoughts.  Somehow, I think it will take more than just one good scan.