fatigue

Tired

Posted on by Beth Caldwell

So I’ve been exhausted all this week, like, lay in bed all day tired. So I finally texted #bestdocever and said “Seriously I’m so fucking tired.” (Yep, we text, and we swear. Reason #583 why he’s #bestdocever.) Turns out my hematocrit is 25.9 today, which explains the fatigue, and I’m having a transfusion tomorrow.

When I’m this fatigued, my feelings tend to wash over me in ways they don’t when I’m feeling well. A friend told me today that leaning into it when it washes over you is a good idea, and that’s really good advice, so here I am, writing this post, hoping that processing will make me feel better. Here is what I’m feeling right now.

I hate that I can’t do stuff for my family, like a simple chore like doing the dishes, because I’m too tired. I hate that when I do try to do a simple chore, I feel winded like I’ve just run a marathon. I hate that I smell terrible because once again I was too tired to take a shower–and I hate that after a shower, I need to lay back down because I’m exhausted from the effort of taking a simple shower.

And even more so than any of that, I hate how I feel emotionally when I’m so tired. I find myself hating the life I’m living. Last week I had my regularly scheduled brain MRI, and I wasn’t even that nervous about the results, because I knew my tumor markers were still dropping and I knew it would probably be fine (and it was)–but I hated having to go have another scan, another IV, another day when I was tired and yet had to drag myself out of bed, out of the house, to lay in machine for another half an hour. 

It washes over me how this is my life, this is going to be my life for the rest of my life, there will never be a time when I’m not getting scanned and poked at least every 3 months. This will go on for the rest of my life. I will always be living this half life, desperately trying to stay alive, not able to participate fully in the world, knowing all of this, all the treatment, will be futile someday.

I know I’ll feel better after the transfusion I’m having tomorrow, and that it’s really hard to live with the ongoing trauma of living with metastastic cancer, and it’s even harder when I’m physically down. I’m not into woo woo stuff about mind-body connections, but the reality is that when I’m physically weak, I have a lot more trouble being emotionally strong. Which is why it’s really just a rough time when I’m this fatigued.

I found myself apologizing to some friends for being pretty absent lately, and one of them said, “Don’t ever apologize to us again.” And when I heard that, I burst into tears, in a good way this time. I need to remind myself that my friends don’t expect me to be Superwoman. They know this shit is HARD and they’re OK with me not being that cancer patient who’s standing on top of a mountain being like “I refuse to let this slow me down.” That it’s perfect OK with them, and they’re not disappointed at all, when I can’t be that person. It’s a relief to know I’m not letting them down. 

The Hubs says the same thing, too, when I tell him how useless I feel. He points out that I DO contribute to the family even when I’m feeling so down, and that I’m not letting him down. That he knows I’m not perfect, and he loves me anyway. All this support is so powerful, and it keeps me going when I’m at a nadir.

That’s it, I’m done now. Processing over, letting go of my guilt, and resting and hoping tomorrow brings better things. Like blood and energy and a return to my sunny disposition.

Futility

Posted on by Beth Caldwell

I’ve been struggling to put on my brave face lately. Partly it’s the fatigue, which has gotten worse with every chemo cycle. I’m now on my fifth round of carboplatin/taxol; neither of these are easy drugs to tolerate, and together, they’re a kick in the gut. When I’m tired, I’m more emotional. It’s just harder to plow through this shitty existence with a smile on my face when I don’t have any energy.

But it’s not just that. I had another brain MRI a few weeks back, and there were three more spots on it. Too tiny to say for sure that they’re more mets, but that’s what I’m expecting the follow-up MRI will show early next month. Which means more gamma knife surgery, more chemo, more treatment. When I got the news about the MRI, I got drunk, and I emailed my oncologist and said “It all just feels so fucking futile.”

I think there is still a part of me, buried deep down, that hopes that I’ll live long enough for a cure to be found, or at least, for some treatment to come along that will make metastatic breast cancer truly chronic. Because, if I could stay alive that long, then all this suffering I’m doing wouldn’t be futile. It’d be a means to an end: staying alive long enough for a better treatment to come along. One that adds more than few months to my lifespan, and one that doesn’t come with the cost of spending days on end lying in bed because I’m too tired to do anything.

But then I have yet another scan that shows yet more progression, and it’s like that tiny little bit of hope gets punched in the gut, and it hurts. It really fucking hurts. And I wish it wasn’t there anymore. I wish I could just accept that this is my fate: to keep being tortured for another year, maybe two, and then to die. Maybe if that little bit of hope wasn’t still in there, it wouldn’t hurt so much every time I see more dots growing on my brain.

But that is the reality of how I’m living with my disease: to live with that tiny bit of hope, to never fully accept that this is all there is for me, and to keep getting punched in the gut over and over again as death inches closer. It’s not just the treatments that are brutal and exhausting. 

Luckily this is my last cycle of carbo/taxol for a while. After this, we’re switching to Xeloda, which is milder and hopefully won’t bottom me out so badly. I really hope so, because when I’m not so tired, hopefully I’ll be better able to pick up the pieces emotionally and keep pushing through this shitty thing I call a life. Because there’s another scan to face in a couple of weeks, and I need to brace myself for another punch in the gut.

Summer Loving

Posted on by Beth Caldwell

School’s out for summer! School’s out forever! OK, not forever, but it may feel like it this summer, because it’s my second summer of active treatment. Last summer, you’ll recall, was the end of my first set of chemo, followed by mastectomy recovery. This summer, it’ll be chemo all summer.

I’m noticing that since I started chemo, The Kids have been more clingy. It’s to be expected–they can tell I don’t feel well. I’ve had to have two blood transfusions now because my body’s been gutted out by the chemo. I just have a lot less energy than I did before going back into treatment. It’s impacting my mood a bit too. I’m sad more, which is what always happens to me when I don’t feel awesome. And The Kids sense that, and want to spend more time with me.

Fortunately, we’re finding ways to make that happen even when fatigue keeps me in bed most days. Recently they started coming to our bedroom to cuddle with us in the mornings when they wake up. Which isn’t awesome when they wake up before 6, but most mornings it’s at a reasonable hour. We’re doing a lot of reading with them–I’m reading the Harry Potter series to The Boy, and The Girl really loves a book that my cousin gave her called Rosie Revere the Engineer. (I love it too, definitely one to check out.) We’re also watching movies together more often.

I know it seems lame to spend so much time indoors when the weather is nice, but that’s part of treatment life. I get out and about when I can, but with chemo happening almost every week, there are at least a few days a week when all I do is lie around. But the upside to all this lying around is that I get a lot more cuddle time than I otherwise would, while reading all those books and watching all those movies. It’s actually pretty awesome feeling all that love from The Kids.

I’m hoping as treatment goes on and I start getting into a better routine, I’ll be able to plan some outings for us around my fatigue days. The Boy asked if we could go to Great Wolf Lodge (did you know there’s a bar inside the splash park? OH YEAH!) and I’ve ordered a mastectomy swimsuit.  I’ll probably spend my time just laying near the wave pool, and shouting encouragement to the kids.

This is parenting with continuous illness. It’s not parenting the way other people do it. My kids don’t do organized sports and I don’t spend my weekends at soccer matches or little league games, because I’m too tired, and The Hubs has too much on his hands without adding stuff like that to the mix. We watch a lot of TV and read a lot of books and other people take the kids for play dates. It’s just simpler and slower than most families, and that’s OK.

Now, the interesting part about this is that the latest parenting trend is the 1970’s Summer. Have you read about it? The idea is that when we were little in the 70’s and 80’s, our parents didn’t sign us up for 4,000 activities. They just said “Get a popsicle and go outside to play” while they watched their stories. Well, now all the cool moms are doing 1970’s summers with their kids. Helicopter parenting is soooooo five minutes ago. How convenient for me, who literally can’t helicopter parent even if I wanted to, that the hot new thing in parenting is exactly what cancer is forcing me to do! 

You know, even before cancer, I was the type of parent who sat around with a drink shouting to my kids to go play in the ditch with their friends. So it’s not like this parenting style is actually that huge of a departure from what I would have chosen. But knowing that others actually CAN choose, and I can’t…I don’t know, it’s just rough. It’s getting harder and harder to read parenting blogs for me, honestly, because I see other moms agonizing about and defending their parenting choices, and I literally can’t be bothered to worry about most of that stuff anymore.

I never knew when I started writing this blog about the Cult of Perfect Motherhood that I’d end up with this particular perspective–that I’d see exactly how ridiculous it is to obsess over the things that modern middle class American moms obsess over, because terminal cancer has put it into such stark relief. It’s pretty powerful deprogramming…but I definitely wouldn’t recommend going about it this way.

Juggling

Posted on by Beth Caldwell

A funny thing happens when your cancer brings you bad news. You share the news, and suddenly EVERYONE in your life wants to help. EVERYONE. People you haven’t seen or heard from in months, people you see all the time, people you’re very close to, people you only sort-of know. It’s wonderful to know how kind the people in  your world are when the chips are down. The problem is, it can be really overwhelming trying to juggle all that love. (That sounds dirty, doesn’t it?)

I don’t mean to sound like an ungrateful asshole, because although I am sometimes an asshole, I’m certainly grateful for all the support we receive from friends and family. Tonight my sister-in-law is bringing us dinner, the first of many that our loved ones will be bringing us during this new phase of treatment. Friends are signing up to take me to chemo sessions and watch The Kids on days I’m in treatment and daycare or school is closed. Our family simply couldn’t function without all this help, period. And we can’t say thank you enough.

And yet, here comes the but. But. I also find that when bad news comes, people don’t just want to help. They also want to spend time with you. It’s like suddenly everyone realized I wasn’t kidding about this whole “metastatic breast cancer is terminal” thing. As though they were all living with their hope that I’d somehow be the miracle, the outlier, the one who lives 20 years and then dies of something unrelated. And now they realize their hope was a delusion, and that I wasn’t just being a pessimist reminding them over and over that the average lifespan after a metastatic breast cancer diagnosis is 2-3 years, and I’m 1 year in already.

So now, everybody wants a piece of my time. They want to get together, they want to go out drinking, they want to make me laugh. They love me and they’re grieving, and they want to hold onto me, and spend time with me.

But the one thing I don’t have right now is time. Not just in the “I’m dying” sense, but also in the very immediate sense. I’m in treatment. That means that every Wednesday for the forseeable future, I’ll be at my oncologist’s office getting chemo. That’s a whole day a week that’s totally shot. On top of that, there’s the effects of chemo, which include, of course, fatigue. Fatigue is an asshole. It had me spend most of Mother’s Day weekend laying around watching The Love Boat, because that’s all I was up for. Fatigue doesn’t allow for nights out drinking with the girls, or playdates at a park. It eats up a lot of time that I’d rather be spending doing something, anything, ANYFUCKINGTHING other than what fatigue allows: laying around, waiting to feel OK again.

And here’s where I feel so incredibly frustrated that cancer is doing this to me, because I’m doing a lot of canceling of plans and saying “I’d love to see you, but I can’t.” So far, everyone’s been great about it, because they’re all lovely people, but it’s still just incredibly overwhelming, all this having to say no. I’m an extrovert, and I get my energy from spending time with people. Spending time alone sucks.

I’m trying to cope by funneling my fun into lazy activities. Like, having people over, so I can lounge in my recliner and just hang out and chat. And I’m also carefully planning my energy expenditures, budgeting my strength for a handful of big nights, like MamaCon this weekend. Living with mets is half a life in many ways, but it’s still a life. And I’m living it the best I can right now, even if it’s not the way I want to live it.