Category Archives: December 2013

Good Riddance, 2013

Well, we’re (obviously) at the end of 2013, and I’m not sad to see it go one bit. I usually have a strict rule against wishing any minute of my life away, but this year won’t be missed. It was memorable, and I learned a lot. I’m not sorry I went through it because of that, but I wouldn’t want to relive it, at all.

Christmas was bittersweet. I loved seeing my family. I loved having them around me, feeling their warmth, knowing we were all taking a little comfort in being with one another at the end of this wearying year. But I missed my brother. I knew his absence would be strongly felt, but I couldn’t get exactly how that would feel until I was in the situation. And while I enjoyed my time at Christmas immensely, I needed his mischevious smile, his constant teasing, punctuated by looks of utter softness and love. Or I wanted them, anyway, and their absence left a hole. I know from experience that the hole will fill with other things, feel less raw, as time goes on. I know that in the future, missing him will mostly feel like reminiscing about the things he brought to the table that I loved so much. I know that next Christmas will be easier. And none of that knowing takes away the present feeling of grief, so I’m just letting myself feel it.

All this grieving, though, it makes me tired. More tired than I already am from the surgery, and the heart problems, and the worry about radiation. Because it’s not just about Mike. It’s about all of the insults this year has brought. All of them, added together. It creates in me this naive expectation that 2014 will be better, as if at midnight, something clicks and my luck changes. I know that’s not how it works, that December 31st and January 1st are actually only separated by a pretty arbitrary date line, but I want so badly to think all of this ends within a matter of hours, and my life drastically improves once the clocks strike midnight. I mean, not just for me. Actually, mainly not for me. Since Miko was six, we have lost five people in our close circle. Five people in five years. I want her to know a year with no death, without the next year making up for it by bringing two deaths. I want to look at my parents and not see the grief and the worry in their eyes. I want all the people I love to just be able to enjoy whatever is occupying them from moment to moment, without the obstacles of mourning or fear.

But I can’t control that. Or much of it, anyway. I can start radiation on the 2nd, and dutifully complete the entire regimen, or as much of it as my body allows, to minimze the chance that they will have to mourn me as well. I can try to be present in my own moments, allowing myself to feel whatever those moments bring me. I can be cognizant that it is important to reach out to my family and friends more often, even if it’s not in my habit, and even when I’m frustrated with them, because I don’t know how much longer any of us has. I can say yes to experiences more often, like my brother did, because who regrets a fuller life? I can be grateful for all the good little (and big) things, even (or maybe especially) when they’re brought because of the bad stuff. I can give my time and energy to only those things, experiences, and people who sustain me, help me grow, or make me feel loved. I can offer love when I see grief in the faces of those I love (or even just like), since I can’t protect them from having to experience it in the first place.

And I can hope. I can hope that the radiation does its job, that 2014 offers my circle a repreive from sickness and death, and that by the end of the year, we’re all a little sad to see it go.

Uncertainty

It’s interesting. Having cancer isn’t what you think it is. Or anyway, having cancer isn’t what I thought it would be. I had it pictured as this melodramatic Lifetime movie, the big pieces of bad news being the hardest, followed by copious amounts of sobbing. In reality, I’m usually just too numb to really react to the big news. Numb, and mentally diving into whatever solution is being proposed. So those parts haven’t been the hardest parts, not really. The hardest parts are the chronic, low level, gnawing parts, like the month-long irritation across my chest, which isn’t bad enough to medicate, but just makes me grumpy and serves as a reminder that I’m still sick. Or the being tired all of the time, watching wistfully as my friends engage in fun, active activities. Or the waiting. And the uncertainty. You’d think I would be well-practiced at handling uncertainty by now, but I’m still pretty lousy at it. And unfortunately, things just seem to be getting more uncertain, not less.

In Two steps forward, one step back,  I talked about the damage done to my heart by both my chemotherapy, and the antibody I was taking, the one that made treatment so promising. But I was pretty hopeful, because this damage wasn’t all that uncommon, and in most cases the heart regains its functioning within a month or two. So we were waiting another month to have another echocardiogram, to make sure my heart function had bounced back before we resumed treatment. Only mine didn’t. From what I understand, a healthy heart ejects between 55 and 70ish % of its blood with every beat. Before and during all but the end of my treatment, mine ejected about 65%. Now, it ejects about 42%, and isn’t improving. According to my oncologist, that means the the treatment is just too risky for me to try again.

The good news is that we don’t really know how much of this treatment (Herceptin) is enough. It’s possible what I’ve had is sufficient. And I still can get my radiation therapy and hormone therapy. Also, it’s possible I’m cancer-free, right? So maybe I don’t even need it.

But maybe I do, and that is what is wearing me down. That nagging voice, which is saying, “You aren’t getting the first-line treatment anymore. That could matter.” Or, “You might have a damaged heart forever.” That, and how it complicates other parts of my treatment. My left ventricle, the part of my heart that is damaged, is in the way of my targeted radiation treatment. Doing conventional radiation could further damage my heart. So my radiation oncologist wants to do a more specialized form of radiation called IMRT, in which he sends the beam around my heart. Of course, he anticipated a battle with the insurance company, which delayed my treatment. Luckily, my nurse case manager got on the case (have I said lately how much I love nurses?), and made the approval happen in record time. But still, just the ups and downs and uncertainty of the whole process left me feeling drained, and at the mercy of other forces. Out of control. I don’t do well with Out of Control.

Fortunately for me, this emotional rut comes at the best time. I’m not a particularly religious person, but I do find Christmas to be as close to religion as I normally get. The act of everyone coming together, regardless of the hassle, just to be with one another and walk through our traditions, makes me feel a part of something bigger. My family makes a three-day extravaganza out of it, and there are a few moments every year that define Christmas for me. The first comes while driving on Christmas Eve to wherever I’m sleeping. Hopefully it’s foggy, certainly it’s dark, and there’s always something mystical about the chilly air. I feel bathed in happy anticipation, content to be spending time with as much of my family as could make the trip. The second comes on Christmas Day, while we’re opening presents. Say what you want about the dangers of consumerism (and I’ll usually join you), but there is something about everyone giving to everyone else that I love. Every year, there is at least one gift that takes the collective family’s breath away. In our family, it isn’t because it is the flashiest gift, or the most expensive one, but because it makes the receiver feel known.  That moment, when I’m watching someone open up a gift, and I can just see that look on his or her face that says, “Oh. They get me.” is such a powerful moment for me, and always chokes me up. Because what is a better feeling than feeling truly known? One year it happened when my sweet nephew made his dad, my brother Mike, a stuffed fish with a red mustache. Anyone who knew Mike will understand why this was perfect (ok, he was a fish broker, was known for his signature pushbroom mustache, and was one in a family of redheads). Another year it happened when my sister gave her mother-in-law, Linda, a picture of her son, my sister’s husband. This was so poignant because just a few months earlier, Linda had suddenly and tragically lost her other son. There isn’t anything that Linda loves more than her boys, and so there wasn’t a dry eye in the house. The last moment comes usually on the 26th or so, when we have our annual Christmas party for the extended family (or as I like to call it, Cousin Day!!!!) and I look around, appreciate all the familiarity, take in the changes the year has made, and bask in cousin love. This year Cousin Day will be made even more special, because my friends, Renee and Luke, are brave enough to join us.

All three of these moments will be different this year, because none will include my brother Mike, except in memory. We will all be so aware of this, because Mike was such a large presence at Christmas. But we will have each other, and we will all have our own moments, which I am certain we will cling to more tightly due to the hardness of this year. And these moments, they will give me the comfort I need to face the continued uncertainty that awaits me.

Thankful

I wanted to write something about how thankful I am for all of the loveliness in my life. I’m hesitating, though, because of the timing. I mean, on the one hand, it’s perfect timing, right? Thanksgiving weekend? And on the other hand, it feels sort of… unoriginal maybe? By this time in the season, we’ve all read what each other is grateful for on Facebook or other media, around the dinner table, etc. While I believe in the power of gratitude, and do believe that we could all stand to be a little more mindful of what is good in our lives, at some point one thing does start to bleed into another, and I fear it starts to lose its meaning, or something. I recognize gratitude fatigue shouldn’t be a thing. I’m just explaining my hesitancy, I guess.

However, regardless of my ambivalence, the fact remains that I have been enormously blessed this year, and feel the need to recognize it. Because whenever anyone says something about losing their faith in humanity, I wish they could see life from my viewpoint. And maybe I feel the need to balance what I see on the news. Because from where I stand, the humanity that surrounds me couldn’t be much better, and I am so thankful for that.

My mom had this experience as she was staying with me after surgery, in which she got into a conversation with a stranger (this part is by no means unusual for my very social mother). The man also had a daughter who had just had a mastectomy, but the similarities ended there. The woman had nobody to care for her except her father, who was stuck at work. She was waiting in the hospital for him to get off of work and take her to his apartment, which wasn’t big enough for the both of them. He was very nervous about how he would give her the post-surgical care that she needed. I’m not even sure if she had insurance.

Contrast that with my experience. I not only am fully covered by health insurance, but I was able to travel to a different state to have the exact surgeon I wanted. I am so incredibly thankful for that, and so acutely aware that I could have just as easily been in her position as I am in mine. During surgery, I had my parents, Brian, and Miko anxiously waiting for me in the hospital, and countless others in other places. After surgery, I was thoroughly spoiled and cared for by family. First, my mom came with us back to Missoula to do everything I needed and every chore I couldn’t attend to, making me feel as if there was nothing she would rather do than make my meals and drain my surgical drains. She made me delicious smoothies, took Miko to and from school, and washed and ironed everything she could find in our house, most of which I didn’t even know needed to be ironed.  The day after she left,  my sister took her place, and took care of my every need and want. Again, delicious meals were made and chores were done. She stayed a week, buying our groceries, running our errands, entertaining us, and making me feel like the most loved sister in the history of sisters. And what’s more, had my mother and sister not been able to come, I can count at least 10 people who might have helped had I called. While they were here, I actually had to turn away help. I was overwhelmed by the goodness of people.

During this whole process, people — and I’m not just talking my immediate circle here — really could not have been nicer or more generous. I’m consistenly reminded of the love around me. All of the cards and the gifts and the flowers and the meals and the messages of hope and love, they have helped me more than I think I am even aware. Because they let me know that while this may be happening to me, I am not alone. That is an incredibly powerful message, one for which I am so thankful (despite being painfully late on my thank you notes).

It’s not only the people in my life I’m thankful for. My sweet dog, Rufus, stayed by my side all summer, while I was at my sickest. When I got home from surgery, he didn’t let me out of his sight if he could help it. Unfortunately, it wasn’t until a week and a half after surgery when his breathing became labored that we found out that he had been struggling with his own cancer. While we were putting him to sleep, I was overcome with gratitude that this loyal companion gave me constant comfort at a time when he just needed a little comfort himself. I am so thankful to have been the human to that loyal dog.

So when I am discouraged by the news, by accounts of people trampling others on Black Friday, gun violence, abuse and neglect, I remind myself that this isn’t what I see on a daily basis. And maybe it’s true that the people around me are just especially good (because I do have outstanding people in my life), I like to think what I see every day is a more accurate reflection of humanity. These well-wishes I receive, this need that others have to let me know that I am in their thoughts and prayers, these consistent offers of help and food and sweetness, they aren’t sensational or sexy enough to make the headlines that scare us. But they happen every single day, and serve as a reminder that people can be pretty wonderful. So I am so thankful for all of those reminders. And honestly, I wouldn’t be nearly as aware of this wonderful humanity were it not for my cancer. So, in a strange way, I’m thankful for my cancer as well. As long as I can beat it.