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?

Dancing with death

Last night I sat next to Molly, watching my aunt dance with her new husband.  My stepfather walked onto the dance floor and took his sister, the bride, in his arms for their dance.  And, of course, I sat there thinking of how much I’d love to see my son and daughter, currently mortal enemies, dance together at one of their weddings.

It had been a long day, starting with the kids circle support group.  We had a large group this time – about 12 families.  After the kids went their directions, the parents gathered to talk.  One parent noted that we had a high proportion of people with very advanced cancers – metastatic colon, lung, pancreatic, mesothelioma, and kidney (me), among others.  A few of the cancer parents had been given a timeline – a year, two years.  Others of us don’t have a timeline yet.  We aren’t blessed (or cursed) with that clock ticking quite so loudly.

But still, it’s there.  And even if our use-by-date is unsaid, we know that our time is limited.

I know that the likelihood of being able to watch either of my kids get married is slim.  I hope that I’ll be there, as well as for the births of their children and all the other highs and lows of their lives.  I hope to see my children become friends, or at least be able to be friendly with one another.

And that’s where I was, emotionally, as I sat, sobbing quietly, in a bathroom stall, where I’d run to hide my tears.  But spending my time mourning my (possible) losses isn’t living, at least not how I want to live.  I want, need, to be in the moment, enjoying my family, my friends, my life.  When I forget the present, I dive into the bleak possibilities of the future.

With that in mind, I wiped off the tears, splashed water on my face, and went back downstairs for a slice of wedding cake and to dance and laugh right then, in the present, with my family.

Living lightly

Since completing my therapy sessions, I’ve been living the past month or two more “lightly”.  Although I think about cancer often, the thoughts are more fleeting, less all-consuming.  I am not living in denial, but the work I did in therapy has given me the ability to better regulate my feelings about cancer and dying.  I don’t want to go deep right now, and can put the introspection and dealing with the prognosis aside for a while.

We’ve been starting to plan for the future again – a welcome change.  We are planning trips, both as a couple and for the whole family.  I’m beginning a watercolor class; I just bought all of the supplies, and we’ll start painting on Wednesday.  I have an interview this week to join the hiking patrol for the regional park system, and yesterday we had the first hike for Together on the Path.

Although I haven’t had time to meditate like I wish, and haven’t done as much drawing or writing, I can recognize that I do have control over those things, and it’s really up to me to carve out the time for those activities.  But, overall, I like living like this.  There’s been little drama, and my life feels quite full of good things.  And for all of that, I’m very grateful.

Colorado – Live by Living retreat

I-70 looks like a fun road to drive, but I was in a rented Mazda , which looks at a hill like I do now, “I’m pretty sure I can make it, but it’s going to be a long, slow haul.”  If I didn’t pay close attention and kep my food to the floor, I’d end up going 40 and pissing off even the truck drivers.  I eventually made it to Leadville, despite my putzy little car and all the stop-the-car-it’s-gorgeous! scenery.  At 10,000 feet above sea level, Leadville is surrounded by mountains that tower above the small town.  If the view doesn’t take your breath away, the thin air will certainly do it.

Saturday morning I met up with the Live by Living crowd: 7 volunteers and 5 participants (nice odds!)  I’d realized the night before that my body wasn’t going to let me hike that day.  Even walking across the Safeway parking lot left me winded.  There was no way a 4 mile hike with 1300 foot climb was in the cards.  So, two of the volunteers and I dropped the rest at the trailhead then drove up a tricky and steep dirt road to the hut.

Uncle Bud's Hut

Uncle Bud’s Hut

The 10th Mountain huts are a series of huts on federal land that are open to the public.  Our hut, Uncle Bud’s, situated at the top of a meadow, provides about a 180 degree view which is dominated by Mount Massive to the south.  Inside, there’s a kitchen, dining area, woodstove, lots of seating, and sleeping for around 20 upstairs.  To the side of the cabin are the outhouses, with windows.  That’s right.  Even the bathrooms have a great view.

Mount Massive

Mount Massive

Saturday was spent waiting for the rest of the group to arrive, getting to know the volunteers and participants, exploring the cabin and immediate area, and, most of all, enjoying the views, the sun, the fresh air.  The volunteers cooked dinner – pasta with chicken and vegetables, a couple of different salads, and, of course, cake to finish.  We spent the evening around a campfire outside.

Ready for the hike

Ready for the hike

On Sunday, I woke up feeling good and ready to hike.  After breakfast, we strapped on our packs and headed up the mountain.  It was slow going for me; both the thin air and my previous breathing issues made it necessary for me to stop every hundred feet or so.  But we made it to our goal of the treeline, and spent a while just enjoying the views.  During the hike, we got some rain – a pleasure for me, since California has been so dry.  Plus, I got to pull out my wet weather gear for a change!   That evening, we held a guided meditation under the stars and nearly full moon.  We followed this up with time spent talking, enjoying the moonlit vistas, and drinking hot tea.

On the trail

On the trail

While the setting was fantastic, what made this retreat truly special were the volunteers.  Their attentiveness and anticipation of our needs was extraordinary.  I felt completely pampered – quite a feat in a cabin with pit toilets and no running water!  The volunteers cooked delicious and healthy meals, plied us with water, tea, coffee, and gave us all emotional support during our hikes.

I can’t say that this retreat changed my life, but it did give me a few days of peace, pampering, and relaxation.  being up in the mountains forced us all to turn of civilization for a while.  to look at the horizon instead of our hand held devices.  To interact with nature and each other.

I plan to go again next year!

 

Live by Living provides transformative outdoor experiences for cancer survivors and their caregivers.  They offer several retreats in the Rockies each summer, as well as day hikes in the Denver area year round.  You can donate to Live by Living on their website.

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.

What I’ve found

I really do like my life, even with this stupid cancer hanging over my head.  I am doing things I really enjoy – hiking, time with friends and family, art.  Even when I’m dealing with sadness, I am still very happy with life.

There is so much to be grateful for.  My health is good, all chronic conditions aside.  I can be active.  I feel good.  I look healthy.  I am pain free.

I have so much love in my life.  My husband, Reil, is supportive.  He is my rock, in a quiet, supportive way.  When the kids are in bed, we watch tv, and he holds my hand.  He gives me comfort and sends me strength.  And I don’t even know if he realizes it.

I have two wonderful kids who motivate me to keep healthy, even when, or perhaps particularly when, they fight or annoy one another.  I plan to be here when the eye-rolling and under the breath mumbling stops.  When they reach the age where they realize that moms really do know something after all.  (That day will come, won’t it?)

I have friends who make me laugh, give me support, challenge me, give me cocktails, give me hugs.  They’ll let me talk about life with cancer – the pain, the blessings, the annoyances – but won’t ever let me define myself by the cancer inside me.  They keep me involved and connected.

I have strong support systems, and am building more through different cancer groups in the area.  Whether it is the family group, where all four of us find support and camaraderie; cooking or art classes that allow me to meet and create with other women; my weekly cancer support group; or my blogging community (hello!), I am building relationships with others on this path.

I have outlets that can help me cope.  I hike and walk for the therapeutic benefits, both physical and emotional.  I make crafts and do art.  I play games.  I read, more slowly than I used to, but I read.  There are lots of things I want to do, to accomplish in whatever time I have left.  It’s just more concentrated than it used to be.