A few thoughts

I tried to write a more coherent post, but this is what came out – I almost think I should place everything in bullet points.

It’s been almost a week back on the Inlyta, and over all it isn’t too bad.  It isn’t too great, either, but let’s focus on the positives first.  Compared to the last round, I’ve done much better – only a little pain that was easily managed with Norco; while I’m taking naps daily, the fatigue isn’t quite as wearing as it had been; I’ve been able to be creative and even get outside a bit.  So, overall, not too bad.

At the same time, though, I feel like I’m more fragile.  I have to plan out each day so that I have the energy to do what I want or need to do.  If I overextend myself, I’ll pay the price.  I recently read about the spoons theory, which has really resonated with me recently, though luckily a shower won’t cost me 1/12th of my daily energy.

During the week, I met with a palliative care team at Kaiser.  They got me hooked up with the Norco.  It’s possible that ibuprofen would do the trick, but because I only have one kidney, and that one isn’t functioning at full capacity, I’m not supposed to use ibuprofen.  So, opioids it is.  And I’m thankful for them.

I am also looking for a support group for either metastatic cancer or for terminally ill patients. I feel like there are things I want to discuss that aren’t really relevant to a general cancer group where a large portion of the people can easily expect to survive.

And, since I’ve been able to get a surprising amount of sewing done, another thing on my mind is how to finish up some of these projects. I’m thinking that maybe I’ll try to get some quilting friends together to help me layer the tops that are finished. And I really need to find a quilter who can take care of the large top that I won’t be able to handle. Not difficult to find, but something I put off because of procrastination and not wanting to deal with the expense.

Also, I really “need” to hire a sewing team to execute some of ideas. I could get SO much done if people were sewing for me while I was in bed, resting. I’d be like Matisse, who was blind or nearly so, when he made many of his cut outs, using helpers to do the work.

I’m still struggling to get used to the way life is right now. Part of me gets a little depressed when I think that it may not get better than this. But, as Rob said today, what’s the alternative? I guess this is what they call the new normal. Ugh.

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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

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.

Mom’s a stoner

I grew up and went to college in Humboldt County, which is one of the largest pot growing areas in the world.  In the 80s, many of the teens and a lot of the college students in Humboldt had tried marijuana, myself included.   However, until today I’d never purchased pot.

My friend Lori picked me up this morning and joked that she was going to “pop my cherry.” We drove over to the dispensary in Oakland, a nondescript building with a guard at the entrance to the fenced lot.  At the front door, we had to go through a metal detector, similar to airport security (but without  x-rays of our bags), and the guard at the door checked our IDs and medical marijuana cards.

The lobby reminded me of a spa, with a seating area, front desk, and a gorgeous wall of plants.  The music was more hip hop than spa serenity, but hey.  I filled out a form, and the guy at reception entered me in their computer, and indicated that we could go through another door into the dispensary.

It was a fairly plain room, with a display on one side of four jars of marijuana that we could sniff. In front of us there was a display of edibles – so many different choices!  To the left was the counter.  We walked up, and Lori told the woman helping us that it was my first time, and the woman immediately gave us both a pre-rolled joint on the house.  (Hey, nice!)

Then the work began.  She asked me what I was looking for and I explained that I was primarily looking for help with neuropathy and general cancer benefits.  She recommended that I focus on something with high CBD:THC ratio (cannabidiol (CBD) is a phytocannabinoid, that according to Wikipedia, is considered to have a wider scope of medical applications than tetrahydrocannabinol (THC).)  We talked about a few different strains and I settled on one called ACDC.

We also talked about tinctures, mints, and creams.  The mints were pretty expensive – about $10/dose, so I passed on those.  I bought a small jar of topical cream, though, and I can already say that it helps with my hands when they’re getting tingly and sore.  At the end of the day, I came home with the ACDC in plant form, a tincture of ACDC, a few creams, the pre-rolled joint, and a complementary “trial sized” cartridge for a zen pen, a micro vaporizer.

Both the kids know I’m starting to use marijuana for cancer related issues.  For the most part, they’re a little curious about it because it’s something new for us, and they’re cool with the idea of me using, though vehemently opposed to the idea of my smoking inside the house (as IF!)  The other day, Molly teasingly called me a stoner.  Yeah, No.

 

 

Lost treasures

My friend Jill came over today and helped me with a small project in my sewing area (now part of my bedroom). As we finished up, I remembered a box of fabric in the closet. I knew it was full of hand dyed fabric that I’d saved when we moved back to California in 2011.

What I didn’t realize was that it also held some fully and partially completed pieces, too. It was like Christmas all over again.

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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.