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.

Shaken, not stirred

I don’t know if I’ll start bleeding again.  I hope I won’t, but past experience tells me I have a week, maybe two, before it starts up once more.

This is one of those things about cancer, and I think it is true whether the cancer is curable or incurable.  It turns your life into a quickly shaken snow globe, with you in the center of it, hanging on for dear life.  You can’t get your balance.  You can’t make sense of anything.  All the pieces of your life are out of place, flying around, impossible to put in order.

I am reminded of when I lost a significant amount of weight after being heavy all of my adult life.  Although I looked and felt good, I also felt out of balance.  People treated me differently, in subtle ways.  I viewed myself differently.  I noticed that some men took notice.  Clothes shopping, a previously pleasurable experience, left me anxious.  I didn’t know what would fit, which stores would work for my new body type.  Eventually, I became more familiar with my new self, and the anxiety settled down.  Subsequent weight fluctuations have been easier to manage, both up and down.

Now here I am with kidney cancer, in the middle of my snow globe of a life, and I’m finding that as my cancer experiences become more familiar, it is easier to deal with them.  They’re the pieces in the snow globe that have fallen back down, allowing me to examine them and understand them in my new reality.  The new normal.

And so, tonight, I’ll restart my medicines, going back down to my original (though inadvertent) quarter dose.  And I’ll continue to hope that I won’t start bleeding again, but if I do, at least now I will be able to approach it as a known quantity.  Still something unsettling, and not even close to the same level as finding clothing that fits, but something I know I can deal with.

But please, don’t make me deal with it again.

In the beginning

So here’s how it all went down.

That Wednesday in late March, just two days after I’d freed myself from a job that felt more punishment than pleasure, I was looking forward to everything that was coming up. I didn’t have to sit at the desk I’d been chained to; the one which caused my back pains. The weather was gorgeous – sunny, but not hot. Perfect for the yard work I’d been planning in my head. I had a plan laid out for studying java programming, so that I could really *get* the object oriented bits. I’d put job hunting out of my head for the time being. I had a quilt or two to make.

And then I noticed that there was blood when I wiped after using the toilet that morning. “Damn, my period isn’t supposed to start until next week,” I thought, annoyed. Later, after a trip to the gym, I peed in the shower (yes, I’m one of those people), and noticed that there were chunks of blood. A nagging thought came to me that that wasn’t period blood.

By the late afternoon, I was experiencing a fair amount of pain, but thinking it was probably just a urinary tract infection, I’d reached out to my doctor who prescribed antibiotics over the phone. The trip to pick them up was difficult, but I comforted myself with the reminder that once the antibiotics kicked in, it would all feel better quickly.

Except it didn’t start to feel better, and instead grew increasingly worse. That night I had the strongest need to urinate, but couldn’t get anything to pass. Finally, as I stood, screaming, in my bathroom near the toilet, the dam broke and what erupted was nothing less than a scene from a horror movie. My bathroom floor was covered with blood and clots as large as an egg. The walls were splattered with blood. I sat down on the toilet and cried with relief, with pain, with terror.

Reil immediately made the decision that, yes, indeed, this warranted the trip to the emergency room we’d been contemplating. By the time we got there, I was once again in pain from the need to urinate. Luckily, the folks there got me situated in a room and started a catheter, which produced a fair amount of relief. A few hours later I was sent home with an appointment with ultrasound the next morning and the promise of a urology appointment later.

We got a few hours of sleep. I emptied my catheter bag. We dropped the kids at school and headed back to the hospital.

The ultrasound technician was friendly, and I was so wiped out that I didn’t notice when she began acting a little squirrely. Reil, on the other hand, did, and began making calls to the urology department to try to get a time for me to come in. Eventually we headed back to the ER to get them to send the order to urology, and minutes later, the ultrasound tech met us there, and spoke to the doctor.

A CT scan was ordered. I was pretty much out of it anyhow, so Reil ran home to pick the kids up from school. My catheter bag filled up and I couldn’t get anyone to empty it immediately- great pain until the nurse helped out.

Finally, the CT scan. And then a wheelchair trip across the road to the urology department, all the while my bladder feeling more and more full. Once there, it became apparent to me that the catheter had been knocked out of place, and that nothing was coming out of my bladder. Despite my pleas for help, they ushered me into an exam room, telling me that the doctor would come soon.

I stood there, waiting. Needing to pee. Have you ever tried holding your urine until it hurts? I was there, but I couldn’t let go. Everything was blocked. A young woman came in after about 20 minutes and I told her I needed help. Before she left, she told me the doctor would be there in a few minutes. Another 5 minutes. I called for help. I screamed. I finally opened the door and slammed it, which brought a couple of nurses running. I begged for their help, and they got me down on the table, removed the catheter, and oh! the relief.

I laid on the table and cried and cried and cried.

And so, it was almost anti-climactic when Reil and the urologist showed up, and the urologist turned to us and said “You have kidney cancer, and it has spread to your lungs.”

And in that moment, yesterday’s thoughts of enjoying freedom, planning my future, loving life, all slipped away.

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.

But first we’ll live

Reil and I have been “binge” watching Game of Thrones, and we just finished season 3.  Though everyone talks about the Red Wedding, what struck me most about the season was a line in the episode “The Bear and the Maiden Fair.”

“If we die, we’ll die.  But first we’ll live.”

But first we’ll live.

Ygritte tells this to Jon Snow, as they’re trying to come to terms with being loyal to one another and to differing factions.  She recognizes that theirs is a life that might be short.  They’ll die sooner or later, but first, together, they’ll live.

Lately I haven’t been focusing so much on living.  I’ve been trying to work through my feelings on death, dying, loss. My life expectancy has been cut drastically, and processing that takes a great amount of energy.  The issues of grief and grieving keep coming up in relation to different parts of my life – my family, my marriage, my children, my career, my hobbies and interests.

How do I reconcile what I thought I’d have with what I’m going to have?  Where are my priorities now?  Those things, whether they be goals, expectations, etc., that I’ve pushed off for later have to be addressed.

But first we’ll live.

photo(2)

Although I want to start focusing on just living again, I know it might not be my primary focus for a while.  I have to honor the feelings I have now.  I have to work through them.  But I yearn for the time when I can just live again.  When I can have the emotional and mental energy to be participate in conversations that aren’t about cancer.  When I can plan things and follow through.  When I can look ahead to living, not dying (even though I know that’s in the forecast, too).  When I can just relax.  When I’m not focused on grief.

But first I’ll grieve.

The kids are at day camp …

and now the days are mine again.

What I did yesterday

  1. Watched trashy tv shows
  2. Folded laundry
  3. Ate a large, not very healthy, lunch

What I’ve done today

  1. Began an art journal
  2. Played with the rabbits
  3. Weeded part of my garden
  4. Drew things on my hands to see how a tattoo might look
  5. Read “The Purity of Vengeance” – almost done
  6. Watched a little bit of trashy tv
  7. Pinned things on Pinterest
  8. Ate a healthier lunch

I think today’s achievements are certainly better, healthier than yesterday’s achievements.  But I can also recognize that yesterday I really needed to just zone out with laundry in my hands and Housewives in front of my eyes.

I’m learning to recognize some of my limits, acknowledge them, accept them.  I’m not the mom I want to be.  I’m not the wife I want to be.  I’m not taking care of my life the way I want to.  I am doing what I can, though.  And hopefully I will get to a point where my brain is a little clearer and I have more capacity for other things.

Grass Valley Trail and my mom

There are times when I feel as if I could hike forever. A good trail with rolling hills, sun light burning down on me in the meadows and gently filtering in through the leaves in the forests. Earbuds playing my favorite tunes. I can walk and dance and sing all day. Especially when I want to avoid everything else.

Like today.

Yesterday my mom was diagnosed with kidney cancer. It’s the same as I have – renal cell carcinoma. They haven’t staged it yet, but since it hasn’t spread, it is less severe, more easily treated than mine. Perhaps curable, unlike mine.

I feel so helpless. I can’t help her. I can’t help me. I barely have the ability to cope with my diagnosis. How can I support my mom in hers? Who will I cling to like I’ve clung to her? Will we cling to each other, hoping for the best?

I sit on the stone bridge where I’ve stopped for a rest and to write. To help clear the thoughts banging around in my brain. A cool breeze blows through, making the eucalyptus trees creak and the redwoods sway.

I tell myself I can’t go down the road of what ifs, even though I already have. What if it isn’t as simple as her doctors make it seem? What if? I can’t even go further down that path.

So I put the earbuds back in, pick myself up off that stone bridge, and start walking. Down a real path that is lined with trees and wildflowers. That will give me a little more time to escape from reality. Where I can sing and dance and hope nobody sees me trying to push these thoughts away.