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.

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.

 

Caregiving by the caregetter

I’ve been finding it difficult to go through cancer and at the same time be a caretaker to my two children.  There are so many things that were once just part of the routine that I don’t want to do – referee fights, help with or monitor homework, cook meals, deal with teen aged attitudes.  Let’s face it, I just want to be the Disney mom;  the one who does the fun stuff with fun kids.

All of this goes against who I’ve been as a parent and a wife.  This isn’t to say I’ve been the epitome of the perfect mother, the always devoted wife, the one who gives up everything for her family.  Because I haven’t, and I’ve often had to struggle because I thought I wasn’t enough of those things.  I love my husband, but I’ve not taken on the roll of waiting on him, or even letting him be the only one who wears the pants.  I adore my kids and have liked day to day life with them, but I’ve always needed my “me” time.  And yet, our family has always been the number 1 priority.  It’s part of the reasons why I’ve not worked full time since the kids were born.  Its the reason I chose my husband (besides his dashing good looks):  I knew that family was his priority, too.

I’ve been feeling a lot of guilt over what I can or can’t do, over what I want or don’t want to do.  I feel guilty about taking more of the family resources, whether it is cash to buy plane tickets or flying to retreats by myself, leaving the family at home.  I’m doing some fun stuff, and they’re not.  I feel that I should still be able to take care of everything, but in reality, I’ve been feeling pretty overwhelmed by the needs of my kids and, to a lesser extent, the wants of my husband.  When I become overwhelmed, I start to retreat from my family.  I become more disconnected.  I can see the disappointment in my kids, especially my daughter.  What I’d like to do is spend time watching Doctor Who with them, or painting watercolors with my daughter, or just hanging out with them.  Just being fun.

I spent the past weekend at a cancer retreat at Harmony Hill in Washington. (I’ll write more about that in another post.)  The participants, volunteers and faculty were all incredibly supportive, and gave me a lot of advice about how to deal with this struggle.  The main piece of advice I got was to say “No.”  Instead of accepting a responsibility I don’t want to take on, doing it half assed or not doing it at all, and then seeing the disappointment from my family,  instead let them know, “No, I cannot do that.”   The advice is so difficult to take and use.  Aren’t we moms supposed to do everything, in high heels, and backwards?  And do it with all possible grace and flair?

But then I came home, and yesterday, after school, when I was completely wiped out, hands and feet hurting so much, my son approached me about making a costume for homecoming week.  He wanted to go buy things somewhere, and all I wanted to do was lie on the sofa to try to recharge.  And what did I tell him?  “No.  I can’t take you out.  I am too tired.  Why don’t you look in the closet and in the shed in the yard for something you can use?”  And he did.  And we spent the next hour talking about what he wanted to make and how he was going to make it.  We’d discuss a step, he’d go do the work while I snoozed a bit more, then he’d come back and we’d move on to the next step.  We accomplished what he wanted, and I was able to do what I needed to do to take care of myself.  Amazing!

I also have the worlds best husband, who was initially a bit freaked out by what my saying “No” might mean.  After a little bit of discussion, he realized it just means that he might have to take on a few more responsibilities, become less of the fun time dad.  And he’s totally up to that.

My job now is to make sure that I’m taking care of myself, too.

 

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.

Colors and Money

After more than a month of no payments, I finally received a deposit onto my state disability debit card.  (I’ve taken to calling it my cancer card, as in, “Honey, let’s let the cancer card take care of dinner tonight.”)  One of the first things I did upon noticing this belated windfall was make an appointment at the local tattoo parlor for a small bracelet tattoo.

I’ve been wanting a tattoo on my hand/wrist for quite a while, but it’s never seemed like the right time.  Getting this tattoo is partly a result of my 80 year old self getting loaded off of tequila shots and screaming “Let’s Party!” at the top of her lungs.  (Figuratively, people, figuratively.)  But I’m off the pazopanib (which slows healing) for a while, and there’s money burning a hole in my pocket.

I haven’t always made the best financial decisions, but I’ve generally tried to do the right thing financially.  The responsible thing.  The 45 year old me thing.  Seven years ago we dug ourselves out of $100,000 of debt (from school, cars, a bit of credit card debt, and some of those not the best financial decisions), and we have tried to keep in the black since then.  We save for retirement.  We pay cash.  We’ve put off certain luxuries for later.  Always later.

But now that we’re faced with the prospect that later might be sooner, some of my feelings about money have changed.  And, again, the 45 and 80 year olds in me are duking it out.  Do we pull money out of the house to finance a trip to Iceland?  – Something that once seemed frivolous, but now seems more reasonably like a family bonding experience and adventure.  How do we balance saving for retirement and the kids’ college needs, which were going to be partly funded by having me go back to work full time, with paying for the things, the experiences, we want to share with our kids now.

As interesting, fun or exciting as they might be, I still see these possible experiences in the same light as presents showered upon a child by their absentee parent after a divorce.  Something to assuage the parent’s guilt, but which never quite makes up for the loss the child feels.  A consolation prize.

And yet, what else can I give them but time with me now?

Not that a tattoo is time with me, or even something that my kids will find meaningful or at all related to them.  Because, of course, this for me, about me, only me.  My consolation prize for having to deal with cancer, the annoying side effects that require I stop my meds, and having to change my entire view of what the rest of my life will be.

And maybe it’s the prize I get for toiling through the emotional weeds, for reaching a bit of emotional solid ground, where I’ll be able to re-plan our life and our finances with all this new information.

Or maybe it’s just pretty and I wanted it.

Tattoo

Differing Selves

In therapy, I am learning that I am experiencing two different developmental stages right now, and that trying to balance the needs and responsibilities of one with the other is part of the unrest I feel.  On the one hand, I’m a 45 year old woman, a wife, a mother, someone who is used to working, supporting myself (with varying amounts of success.)  On the other hand, I’m like an 80 year old, coming to terms with end of life issues.  Both of these stages are valid and need to be honored, but at times, their needs require compromise.

One more place in my life where I have to attempt balance.  Dammit.

Part of me would like to give in to the 80 year old.  Just say “Fuck it,” put down my 45 year old responsibilities and do only what I want.  Give strangers on the sidewalk a piece of my mind?  Check.  Hire someone to take care of the house and meals?  Check.  Play pinochle and dominos with my friends?  Check.  Sort of.

And then I wake up and remember that I have two kids who need me, a husband who needs me, bills to be paid, college funds to be saved, a living room that needs vacuuming, and laundry to be folded.

It’s not that I don’t want to tend to these parts of my life (though I could easily do without the vacuuming and bill paying.)  A few months ago, all of this felt normal, exactly where I was supposed to be and what I was supposed to be doing.  And I felt content.  Sometimes things were a drudge (hello, pairing socks) but there wasn’t conflict.

And now?  Forget the whole cliche of battling cancer.  The real battle in me is between the 45 year old self and the 80 year old self.  The 80 year old leaves household chores undone, while the 45 year old feels guilty for the mess or angst about not setting a good example for the kids.  The 45 year old runs the kids to camp and takes care of some errands, leaving the 80 year old feeling neglected and wanting to spend the day painting.

Sometimes the 80 year old feels like a tantrumming toddler, and others, the 45 year old seems to be way too much of a nag.

And somewhere, inside myself, I have to find room for both of them.  Oh joy.

What do I need?

I have an online community of friends.  I’ve known some of these women for 10 or more years.  We’ve watched our children grow from infants, toddlers, children, into tweens, teens and beyond.  We’ve shared our joys and our pains.  They were the first group I notified when I started the bleeding that would lead to my cancer diagnosis.  They’re good.  They’re great.  And I listen to what they have to say.

In this case, what they’ve been saying is roughly this:  Lisa, you’re having a hard time, understandably.  People want to help you.  Please let people know what you want or need.

So, OK.  Here’s some of what I want.

People to make dates, rendezvous, appointments, assignations with me.  I want to be with people, but I’m both feeling so worn out and also feeling like I’d be such lousy company that I don’t reach out very well.  Please reach out.

  • Lunch
  • Shopping
  • Pedicure/Asian Foot Massage
  • Art Day
  • Walking/Hiking
  • Movies

A clean house.  Even just a room.

Home cooked meals.  I have a lot of ingredients in my house.  You are welcome to use them.  I’ll even help cook.  I just can’t do it myself.  Vegetarian, vegetables are pluses.  If you need ideas, let me know.  And anyone who can get Sam’s lentil soup recipe (from Blue Dish in San Leandro) will have my utmost respect.

Dream Dinners meals.  Because I am not planning my own meals, I’ve been using this service a lot.  If you want to help out, but are not local, a gift certificate would be useful.

Travel.  Not sure how people can help on this one.  Gift certificates for hotel rooms? Frequent flyer miles?  Definitely a want, not a need.

Weeding in my garden, maybe some digging.  I’m getting a little of this done each week, but the weeds grow a little faster than I weed.

People who will tell me explicitly that it is OK to talk to them about cancer.  People who can be ok with me talking about and learning to accept that my life has been cut much shorter than I’d anticipated.  It’s heavy shit, and it’s hard for me to lay it on anyone else.

Help me find ways to still be in this world.  To be relevant, useful, meaningful.  I know this is depression/grief/sadness speaking, but it’s hard to find that right now.

Reiki, Healing Touch, etc.

This post has, strangely enough, been harder to write than some of my more angsty, crying posts.  Take from that what you will.