Tag Archives: grief

One Year

It’s been one year today. One year since my wonderful brother lost his battle with melanoma. One year since he passed away. One year gone, and I still haven’t found the answer that feels right when people ask me how many siblings I have; saying two feels wrong, disloyal. But saying three isn’t quite right, either. So I usually just overexplain the situation in my typical way, making what was meant to be an innocuous question into an awkward interchange.

It feels impossible that a year has already passed since he has been a living, breathing member of our world. And at the same time, it seems impossible that it hasn’t been five years, or a lifetime since last March, since Before my Cancer. For me, today doesn’t just mark the anniversary of my brother’s death, but also the beginning of other unwelcome anniversaries. Tomorrow will be the one year anniversary of when I found my lump. This is followed shortly by the anniversaries of going to my brother’s service, seeing the doctor, having biopsy after biopsy, starting chemo, and on and on. This is significant to me because last year on all of those occasions, I would think to myself, “but my brother just died.” As if I should be spared something bad because something worse already happened. And on all of those occasions, I could also say, “last year at this time, my brother was alive.” But after today, I can’t say that anymore, and that is hitting me so hard. Because the further away I get from his death, the greater the likelihood is that the memories of him become blurrier, less refined. That I’ll have to find pictures of him to really recall the crinkles around his eyes from all of his smiling, giving him this friendly, jokey look. Or I’ll have to listen to old voicemails to fully capture the quality of his loving voice in my head, wishing I also had sarcastic, smart-ass voicemails so I could have a record of how he sounded when he was teasing me. I love remembering his teasing.

I want to say it’s unfair. It’s unfair I didn’t get to connect with him about our diagnoses, and we didn’t get to help each other through the emotional parts, although I’m not sure he ever would have been open to receiving my help, just offering his. It’s unfair he didn’t get to see our sister finally get her dream job, or our brother be happier than he’s been in I’m not sure how long. It’s unfair he won’t watch me graduate (although at my current rate of progress, it’s possible nobody will be able to watch that). It’s unfair he wasn’t able to become a grandfather, because he would have been the best kind – involved, active, and loving. It’s unfair he couldn’t watch his children grow ever more gracious and interesting each day, and his former wife (and dear friend, although that word doesn’t fully capture the depth of their relationship) lovingly and patiently walk them through their grief, as well as her own (I do get that if he had been here, there wouldn’t have been the grief to walk through, but that’s not the point). It’s unfair he and my parents were robbed of more time together to connect and to love. It’s unfair they had to watch one of their children die. 

There are countless ways that this feels unfair. But calling it unfair doesn’t feel quite right, either. Because is that saying that it would be more fair if somebody else’s brother, father, son, friend had died? Would it be more fair if he had lived, but with a poor quality of life? It’s not like we are all promised a long and healthy life, and his promise was broken. We aren’t. We are only given this moment, and for the most part (institutional inequalities and other injustices aside), it is up to us to make sure this moment is lived intentionally, whatever that means to each of us. My brother was good at that. He used to like to tell me that he worked hard and played hard, and he did. He also used to say that I didn’t play hard, often enough. In his honor, it feels like I should do something he would either consider working or playing hard. Something that represents truly living. But I don’t really feel like it today. Today, I feel like holing up, and just being with my memories of him.

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.

Mike

I’ve been thinking a lot about my brother lately. It’s hard to believe it has already been two and a half months since he passed. It feels both much shorter and much longer away. So much has happened in between.

I feel cheated, really. I feel this sense of injustice/anger/sadness/guilt/anger/anger/anger that my cancer got in the way of grieving him. It was the day after he died that I found the lump, and three weeks later I had the diagnosis. I knew at the lump, though. I just knew. So I went to his service struggling between trying to be present in this celebration of his wonderful life, and scared for my own. Having all of my family there was so warm and comforting, but again, the struggle. Wanting to tell them all, “Hey! I’m scared!” but also needing them to be there in their grief for Mike.

When I got home, it was easy to become engrossed in my fear of what’s next. Mike and I only saw each other a few times a year, so his absence wasn’t felt as strongly at first as it was for those who saw him every day. But by now, I would have gotten a smart-ass text or two from him, maybe a sweet email or call. So now, two and a half months later, I’m missing him intensely, and mad that my cancer interrupted my mourning period.

He was 14 years older than me, and wildly different from me, so it’s relatively recently in our relationship that we found things in common. He was highly efficient, and I am more scattered. He was decisive, while I chew over every possibility. He liked to be in charge (he once told me that on airplanes, if he didn’t get seated in an emergency row, he always volunteered to switch, because he preferred having the responsibility), whereas I am comforted by direction. We had similarities, sure, but our differences were more obvious. But it worked, and we loved each other fiercely. So I find it heartachingly ironic that one thing that we could have related to one another with so strongly, was prevented by a matter of weeks.

It’s not so much that I’m wishing for his support right now, although I’m certain I would have found it comforting to talk to him. But I think about the differences in our experiences, or what I hope to be differences, anyway. I think about the outpouring of support I’ve gotten, as well as all the hope and promise there is for my survival. And then I think about him. When he had these hard conversations, especially when the cancer came back, it must have been so much more lonely. He had to tell everyone who loved him so dearly that the cancer was everywhere, and he would not be pursuing treatment. There isn’t a lot of community in that. He met his last months with bravery and grace, surrounded by the people he loved most, and yet it still sounds so lonely to me. That finality of knowing everyone else would be living on, while his life was ending — I wish we could have talked about that.

My unwelcome guest

This first one is going to be a little longish. There’s a lot to explain. So maybe I should start with the Why.

I was recently diagnosed with left breast cancer.  At first we thought it was caught at the earliest stage.  I even joked with my sister that I had said once when working in oncology that if I had to pick a cancer, I’d pick that.  She recommended that next time I pick marshmallows instead of cancer.  Point taken.  Now, however, the stage (how far it has spread, basically) is unclear.  Subsequent testing (MRI) make it look as if it might be more involved than thought.  And it seems as if every test I have creates the need for another one, and delays having any answers.  This is not only frustrating and scary for me, it is also those things for the people who care about me.  And it creates this need to have difficult conversations over and over again.  Don’t get me wrong,  I love to connect with my circle.  But it is also emotionally exhausting.  The worst part about all of this is seeing the pain it causes for others.  So a friend of mine suggested a blog.  So here I go!

Why nopinkribbonsplease?  It’s not that I am anti-breast cancer research or support.  I’m not a jerk.  It came up when I was sharing my anger and irritation with my therapist, and she got it right away.  She said, “Yeah, I can see that.  It’s like you’re relegated to a life of pink ribbons from here on out.”  Exactly.  I love my therapist.

The point is, I’m not just a breast cancer patient.  A pink ribbon doesn’t describe me very well at all.  It says nothing about my relationships, which are wildly important to me.  Or about what I like to do.  Or maybe more importantly, what I like to say that I do when I’m actually doing other things.  For example, I say I like to hike.  I like to plan to hike the next day.  What I’m actually doing while I’m planning a hike is sitting on the couch, eating Ben and Jerry’s ice cream, and watching The Mindy Project.  I also say I like research.  What I actually do is get on facebook, or go down the hall to visit Renee, and talk about how I’m not getting any research done.  But I digress.  A pink ribbon doesn’t tell you that I’ve spent the last four years of my life working on my Ph.D.  Or that the Ph.D. will (hopefully) one day be in psychology.  Or that my focus is school psychology.  Or that my research involves creating safe schools  LGBT youth.  It doesn’t say that I am very political, intensely so sometimes.  It doesn’t tell you that my brother died only a little over a month ago of cancer, and I’m pissed that my family can’t seem to catch a damn break. Or that I actually don’t really like the color pink, and it irritates me that just because this disease affects mainly (not solely) women, everything about it has to be swathed in pink pink pink.  Pink ribbons make me feel as if my world is shrinking to only include the one thing I’d rather not be included.  Like all the fun, smart guests have left my party, and now I’m just stuck with this unwelcome guest, the one I didn’t even invite.

Perhaps I’m in denial, not wanting to join the ranks of breast cancer patients, dragging my heels, what have you.  Maybe someday I’ll decorate my whole house in pink ribbons and tattoo my body with them.  But for now, no pink ribbons please.  Why the please?  Because that’s just polite.  That’s how my mama raised me.

So… the What.  I will use this as a way to keep everyone who wants to read it updated on the latest.  That might include which tests are coming up, what the results are or when to expect them, or maybe just what I’m feeling about it all.  I guess I don’t completely know yet.  Maybe it’s also a way to not ONLY sit on the couch and watch The Mindy Project.  Because I’m scared of the day when a plan to go on a hike is postponed not due to laziness, but because it is wildly unrealistic.

So far, I have had mammograms (irregular), ultrasound (suspicious), a biopsy (left breast invasive ductal carcinoma, staging and size unknown because the facility I went to didn’t do enough testing) and MRI (“a lot of activity there, even in the right breast”).  The MRI made it look as if a lumpectomy may be out of the question. Tomorrow I go in (not to the same facility) for several (up to seven) biopsies and ultrasound.  The results from those should tell us the extent of the cancer, and whether the cancer cells have hormone receptors.  That, in turn, will inform what type of surgery, whether chemo and radiation are necessary, and which should come first.  I’m hoping to know by next Wednesday.  I’ll let you know when I do.