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.

Some of these might be possible

Antelope Canyon, AZ

Bourbon Street, New Orleans

Camino de Santiago, Spain

Forum, Rome

Gorges of Australia

Great Blue Hole

Iceland

Jordan, Petra

Marketplaces of Marrakesh/Morocco

Ngorogoro Crater

Olympic National Park

Pacific Crest Trail

Rapa Nui

Scottish Highlands

Yucatan Peninsula

Zion National Park

Cancer’s hard, y’all

The past couple of weeks have been the most challenging, physically, health wise, since I had my operation.  At various times, I’ve dealt with neuropathy, joint pain, nausea, diarrhea, hot flashes, weakness, and/or fatigue.  I have had to adjust my life to deal with these side effects by resting, taking additional prescriptions, having other people carry more of the load.  I was so glad to have my dad visit during the past week, as he took up most of the driving duties – a huge relief, especially since my car has a manual transmission, and driving and shifting has become painful.

I’m trying to deal with each of these issues with grace and patience, but that doesn’t always happen.  It is best for me if I try to just accept that this is how I’m feeling right now (and that’s true if I’m feeling good, bad, or anywhere in between), and to acknowledge that how I feel tomorrow, the next day, 20 minutes from now, may be totally different.  And maybe it’ll be a day where I need to just lie on the sofa watching House Hunters International and bad movies.  Or maybe it’s a day where I can hike a few miles.  And either one is ok.  Because it’s a day, right?

Because of all these side effects, though, I’ve decided to go back down to two pills a day.  (I’d moved up to three last month between my trips to Colorado and Washington.)  I had a scan last week, and the results continue to be good.  The same day I met with a new GP, who was astonished by my blood glucose levels and suggested that I might be able to get off diabetes medicine.  We decided, though, to just change meds to something that is less of a stress on the kidneys.  So, all things told, I’m doing well, even if sometimes it is just hard and painful.  And poopy.

Going with the idea that I need to take care of myself, today we finally got off the pot and bought a new (to us) car for me to drive.  It’s got automatic transmission, heated leather seats, and is definitely the swankiest car I’ve owned.  I don’t have to shift any more, and my ass will be warm and comfortable.  I think I’ll live in it.

 

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.