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

Not yet!

Last night Linda died. I met her in a support group that I attended last summer. Once school started back up, it was difficult to go, but I went when I could. I last saw her at a retreat in November, and was surprised to hear yesterday that she was on hospice.

On my walk today, I found myself crying for her (for me), and chided myself, because obviously there are people who know her better and loved her fully. But she touched my life, too, and helped me get situated on this stupid journey.

She was diagnosed in 2013, about 18 months ago. I keep thinking “Not yet! Not yet!” Am I thinking of her or me? Yes. I guess I am.

I notice that when I’m not posting about quilting, I seem to post about the things that break my cool. Being involved in support groups provides a lot of support, but also ample opportunities for me to lose my cool. On the whole though, I’m glad to not have to take this journey on my own.

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.

 

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.

Letter to a friend

There is some freedom for me in knowing there isn’t a cure for what ails me. I may not know the way my cancer path will meander. I may not know how long my path my stretch, though I do know it will be shorter than I’d like. I do know where it will end – not with a cure, but with death.

I know that, to some, this may sound fatalistic, or that I’ve given up. But I haven’t. (Though I think I deserve the right to be fatalistic now and then.) I simply want to focus on living and making it the best life I can.

I feel I have a bit of freedom in that I don’t have to waste my time and energy hoping for a cure, for my salvation, as it were. I don’t have to go to battle to try to save my life, trying desperately to change the path I’m on, guessing which treatment might keep me from dying.

Instead, I get to make choices about how to live my days. I get to think about the things that are truly important to me. I have the chance to examine my life. I have the chance to examine my death. I have the chance to come to terms with a shortened life span, with death that will be sooner, rather than later.

I want to share all of this with you. I want you to be with me on my journey through cancer, as you’ve been with me through other journeys – painful, happy, joyful, scary.  I want you to understand my journey, so listen.  I want to understand your journey, so don’t be afraid to talk.

Please don’t be upset if I choose to find ways to accept my path rather than fight against it.  I want it to be as joyful as possible, and that requires, at least for me, a certain sense of peace.  I haven’t attained that peace yet, but that is my goal.

That,  and sharing good times and laughter and tears with you.

Don’t give a …

I didn’t want to go, but Reil dragged me to the polling place on Tuesday and I dutifully filled in the arrows on my ballot, signed the provisional ballot form (since I didn’t know – or care – what happened to my original mail in ballot), and turned it all in to the workers.  Honestly, though, if Reil hadn’t been going and if going along didn’t seem like the path of least resistance, I wouldn’t have bothered.  But we vote.  That’s what our family does, and Reil would have given me a hard time if I didn’t.  So I voted.

Voting PlaceI could not care less about the results.  I used to enjoy talking politics.  I loved watching shows like Real Time and the Daily Show, and reading political blogs or getting into discussions (arguments) about politics both online and off.  Now I just don’t care.  I might watch Jon Stewart or John Oliver, and feel somewhat amused by the jokes, but I don’t feel the passion or the rage I used to feel.

That same morning, I had breakfast with Jule.  We chatted about a lot of different things, including, of course, stupid cancer.  She complained about some aspects of her work, we made plans for the weekend, and later she asked me, “How do you do it?”

“Do what?” I asked

“Give a damn about any of my problems.  Don’t they just seem annoying to you?  You’ve got a bigger problem.”

I’m sure it doesn’t hurt that when I listen to my friends talk about their problems or hear their mundane tales of life, I am transported to a world where these are the big issues, the only issues, to a world I used to live in, but now can only glimpse from the outside.

But I do care about them, probably even more than before cancer found me.  I’ve gotten better at listening; though I’ll never be Barbara Walters, I’m better at asking questions of others and drawing out more information about them.  I feel more engaged with the people around me.  I crave the deeper connections that may have once left me feeling scared or on shaky ground, emotionally.

The world that I care about seems to have become a much smaller place, and yet it is also a much richer, deeper world.

photo credit: secretlondon123 via photopin   cc

The energy vampire

I’m being stalked by a psychic vampire.  She’s the one who only has interest in me because I’ve got cancer.  Who, instead of adding to my life is sucking energy from me.  She monopolizes my attention at social events, inundates me with information that I don’t want or need, and has talked about me with others.

The kinder, gentler side of me acknowledges that she means well, but every other part of me shrieks, “I don’t care!  Make it stop!  Make her go away!” 

My friends and support group have counseled me to not respond to phone calls or emails – easy enough.  The other part of their advice is harder; when I see her in person, I should shut her down immediately.  “I don’t want to talk about this now.”  This is difficult for me on a couple of levels.  Of course it is hard to do something that might hurt her feelings.  It is also difficult for me to voice something that is a bit of a lie; I want to talk about all of this – the cancer, my health, the uncertainty I’m living with, thoughts of death and dying; I just don’t want to talk about any of it with her!  I don’t want to spend my time with someone who only sees me as CANCER VICTIM.

I know that I will need to learn to increase my boundary setting skills.  She might be the first of her kind that I’ve met, but she probably won’t be the last.

For those wondering how to best deal with a person living with cancer, I’d refer you to this blog post by Lisa B. Adams.

What to say to someone with cancer/thoughts on how to be a friend to someone with a serious illness

Lisa talks about some of the stupid things people say and gives hints on what are better things to say.  One of her hints that hit home for me was “One thing I think is very important is to always say to someone who is ill or has experienced a death in the family: do not write me a thank you note for this. Do not feel the need to answer this email. Do not feel the need to call me back.

When I was first diagnosed and immediately after my surgery (yeah, all of less than 2 months ago!), I received lots and lots of cards, calls, emails, packages.  And my brain was complete mush – I didn’t have the capacity to be able to answer everyone, thank everyone, even to acknowledge everyone.  Really, if it wasn’t right in front of me at the moment, it wasn’t in my mind (sometimes even if it was in front of me at the moment!)  Knowing that it was OK to not respond was a huge relief.  I could focus on healing and figuring out where my life was going with my stage 4 diagnosis.

I am muddling my way through this cancer thing, and I know the people around me are, too.  So as long as you’re able to view me as Lisa, not as Lisa’s got Cancer, then all will be good.