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.

Chemo

Last Thursday, I met my medical oncologist, Dr. Sarah Scott, for the first time. She is the doctor who will treat my whole body, in case any cancer spread (undetectable by imaging) to other parts of my body by giving my chemotherapy. I’m pretty sure she’s younger than me, and I spent a good portion of the appointment wondering when it was that I got old enough not only to have a specialist who is younger than me, but one who has practiced for a while. Seems like that happened awfully quickly. Oh well, she probably hasn’t perfected the art of procrastination like I have. We all have our strengths.

I was super nervous before the appointment. I knew this because I kept having imaginary arguments with her and her office staff in my head, which is something I do when I get anxious. When I recognized this and articulated why, I realized it wasn’t because I was afraid she was going to tell me she wanted me to start chemo soon, or that it was going to be difficult. Just the opposite, in fact. I was scared she was going to say that there were about 5 more things that had to happen before chemo could start, and that her office staff would contact me sometime withing the next week or so to get them started. I started practicing assertiveness skills (more imaginary arguments) to let her know I had already waited too long, and that I wanted to start ASAP.

So imagine my excitement when she told me I could start Monday. Yes, I recognize how odd it sounds to be excited to start chemo. But it has to start sometime, right? And the waiting is so anxiety-provoking for me, that there has to be some relief in the starting. There just has to be. So I jumped at the chance, before she could change her mind.

Because my cancer is aggressive, and something called HER2 positive (described here), the regimen will last for 20 weeks. For the first eight weeks, I will go into Montana Cancer Center at St. Pat’s (just blocks from my house!) every other week for 4-6 hours, and get an infusion of two drugs: Adriamycin and Cytoxan. Most likely, I will be extremely tired, and have considerable nausea, for which I just picked up a veritable pharmacy to help me manage. I may have bone pain and mouth sores. I will lose my hair in 10-14 days. At first, I wasn’t too worried about that side effect. I have always kind of wanted to shave my head, and it will grow back, so it didn’t feel like too big of a deal (although there is a flat spot on the top of my head, recently verified by a good friend, and I’m not too thrilled about advertising that). But then it hit me. Shaving my head because I want to, and shaving my head because it’s starting to fall out in clumps are two different things, separated by choice. And lately, a lot of choice has been taken from me. The choice to apply for internships this year, the choice of how to spend my summer. Choice has been replaced by loss. I’m losing my breasts, my hair, maybe my fertility. And no, I wasn’t planning on giving birth to any babies, and I’ve never really done much with my hair. But those are choices, my choices, and I like having them. So I’m sitting with those losses, and recognizing them as such. But also recognizing that those losses will eventually be replaced as well by wonderful things. Not the least of which includes my life.

After the first eight weeks of chemotherapy are over, so is the hardest part (YES!!). For the next 12 weeks, I will get another combination weekly of Taxol and Herceptin. The side effects should be less severe, and maybe even not very noticeable (fingers crossed).

Hopefully soon, I’ll see a pattern in how the chemo affects me, and can count on days of decent-feelingness. Hopefully I make good use of those days by doing something enjoyable. And hopefully, on the days I feel crappy, I don’t get bogged down with guilt or self-pity that I can’t do the fun things. That’s my goal.

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.