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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.

Results (part two)

In my family (some of us more than others), we tend to use humor when we’re anxious. That’s not to say others find us funny, but it’s how we cope. It calms us down. If we can joke about it, it can’t have complete control over us, right? And if the humor can be morbid, all the better. (I’m mostly talking about my sister and I here, and generalizing to the whole family, but whatever). But, this doesn’t really work for a lot of other people. So when I dealt with my anxiety about getting the results from my PET scan by working into every other conversation some quip about being riddled with cancer, or something of the like, I got some unappreciative reactions. Huh.

Turns out, I’m a dirty liar. Because I’m not riddled with cancer. Almost exactly the opposite, in fact. There is a little remaining in my left breast, because my surgeon wasn’t able to get clear margins, but we already knew that. There is no evidence that it’s in any more lymph nodes, or my liver, or my brain, or my bones, or anywhere else.

So what does this mean? Well, it doesn’t mean that the cancer definitely hasn’t spread. We know there was some in the lymph nodes that she took during surgery, so it’s possible a few rogue cells went elsewhere. But it does mean that if it has spread, not very much has. So little in fact, it’s undetectable by PET/CT. So we still do the chemotherapy. That will treat my whole body, just in case. Another thing it means is that we don’t have to alter the treatment plan even more, to compensate for the more advanced disease. It means we caught it in time to have a fighting chance, before it was able to break down all of my defenses. It means I’ve never been so happy in my life to be wrong. Because the thing that was prompting my tasteless quips about being riddled with cancer was my overwhelming fear. I just knew it had spread everywhere, just like my brother. And that that news would be too much for his kids, and my parents. And Miko. And everyone else who felt my brother’s death so deeply. But I really couldn’t have been more wrong, and my results couldn’t have been better.

Most of all, what this means is that I can start chemo in the next few weeks feeling strong and confident, a little excited even to conquer this next phase. And just maybe, the people around me will be subjected to a little bit less of my morbid humor.

Hoping for the silver lining

Lately, I’ve been thinking a lot about a book I used to read to Miko when she was little. It was called Zen Shorts, and it was basically a series of Zen-inspired short stories, and an easy way to introduce philosophical questions in an accessible way for her (and maybe me). The story that stands out the most is about a man who experiences a series of events, some seemingly fortunate, and some seemingly unfortunate. After each event (I don’t remember the details, but let’s say, for example, injuring his leg), someone would invariably comment on whether said event was fortunate or unfortunate, to which he would always reply, “We’ll see.” The lesson, of course, is that even something that seems horribly tragic can end up being fortunate, if you just open your eyes. You injur your leg, so you have to miss something you’ve been looking forward to. So you stay home, and someone you haven’t seen for ages drops by unexpectedly, and you reconnect. That kind of thing. I keep thinking of this lesson, trying to remember that when I look back on all of this, I might see it through a “I didn’t know at the time that this was a good thing” kind of lens. But it’s getting harder.

I was told last week by a doctor that my cancer (he actually said cancers, since there are two tumors. I have decided that he is being awfully literal, and that’s just depressing, so will continue to refer to it in the singular) is highly aggressive, and will need to be treated accordingly. However (good news!) he also said that high-grade (scale of 1-3, the higher = more aggressive) cancer tends to respond better to chemotherapy. So, while it is more dangerous, it also may be more treatable. Unfortunately, more aggressive treatment might also mean longer treatment. So it seems as if my assumption that I could squeeze all of my treatment into this summer, and go back to normal life when school started was unrealistic. I mean, admittedly, it wasn’t an evidence-based assumption. It was a wish-based assumption, maintained by avoiding any type of research that might disconfirm it. This means that when I told him I was planning on applying to internships in the Fall, he looked at me pityingly and said, “Um, no. Probably not.” Then went on and described an average treatment process that takes the better part of a year, maybe longer, because of my aggressive cancer. I guess the good news here is that I don’t have to propose my dissertation by October 15, like I would if I were applying to internships? But really, I’d rather just do the dissertation, if I had the choice. Maybe I don’t know the good news yet. And maybe, there just isn’t any for this part.

Tomorrow, I go back to Spokane for a PET/CT. This will show us where, if anywhere, the cancer has spread to in my body. So far, every bit of testing has painted an uglier picture. I would really love for the PET/CT results to be the exception, because I’m having a really hard time believing that finding out that it has spread elsewhere could ever turn out to be a good thing. So while I am normally comforted by patterns, predictability, continuitiy, I’m really hoping for an aberration here. In a big way.

The last thing that is testing my optimism is the waiting. Waiting for results, waiting for referrals, waiting for availability. I used to think I was a patient person, but the older I get, the less I think this is true. Waiting for anything is hard, but waiting to find out something that absolutely affects the rest of my life feels like torture. The soonest appointment I could get to see a medical oncologist, the doctor who will administer and manage my chemotherapy, is May 30th. Having worked in oncology, I remember giving patients that kind of turn-around time, and not giving it a lot of thought, because it truly was the best I could offer. Now, being on the other side of the desk, knowing my cancer is aggressive, May 30th seems impossibly far away, and I am filled with regret for not offering enough empathy to all of those patients in my past. But maybe, this timing will end up being a good thing. Maybe it will give her time to read the latest research, or she will have just had a refreshing vacation. Here’s hoping for the silver lining.

Results

I can’t say this has been my favorite week. Although, I have to say, it hasn’t been all bad. Just like I say to the parents of kids with behavior problems I work with: don’t make the “bad” behavior more important than the “good,” it’s the same thing with this week. I don’t want to make the cancer bigger than all the lovely things. I’ve had more messages than I can count. I’ve had emails, facebook messages, text messages, comments on my blog, cards, letters, in-person hugs and words of support, voicemails, and phone calls. The clinic director gave me flowers at our end-of-the-year ceremony, and some sweet words of encouragement. Meals have been lovingly cooked and brought to me. Miko gives me extra kisses. Family and friends have come to appointments and surgery with me, and many others have expressed that they would. Even more have said they would be willing to help in whatever way I needed. Students have shared that they are wishing me well (directly followed by asking if they can still turn in extra credit), and so many people have expressed that they are in their thoughts/prayers/good vibes/positive energy. Classmates and faculty have supported me in so many amazing ways. It’s a little overwhelming, all this love I’ve received.

And surgery wasn’t even all that bad. The worst part was the migraine I had beforehand, probably from lack of sleep, water, food, and coffee that day. Other than that, it’s been pretty pain free, with little need for pain pills. The hospital staff was great, and my surgeon is brilliant. The tech making motorcycle noises as he pushed my wheelchair was a little annoying, but all in all, that’s not so bad. I even got to stay in a fancy-pants hotel with my sweet family, which felt luxurious.

The results I received aren’t what I was hoping for, though. For starters, all of the margins are positive. Surgical oncologists like to get a benign margin of tissue surrounding the cancer, so they can be confident they got it all. My cancer went to the end of all sides of the tissue they took out. There is also a 3 cm invasive component, meaning the cancer has left the ducts and invaded the surrounding tissue. My surgeon took five lymph nodes, two of which were positive for cancer.

So what does this mean? First, it means that the next step is meeting with a medical oncologist to talk about chemotherapy. That will happen either at the end of next week, or the beginning of the following week. Chemo can’t start until two weeks after surgery, so we have a little wiggle room. That’s because of the invasive component. Within the next week or so, I’ll also have a full body PET/CT, to determine staging (to see if it has spread to other areas). Because of the positive margins, I will have to go back to surgery after chemo is done, and have a mastectomy. Then I’ll follow that up with radiation, just to maximize my chances that every cancer cell has been reached.

So I’m not really looking forward to this summer. I’m pretty sure it won’t be my favorite. But I’m also pretty sure, if so far is any indication, that the bad parts will be tempered by the good, and my amazing support team will make it all a little better. I’m pretty sure I’ll feel loved.

Countdown to Wednesday

I’m on a countdown, it seems. Every minute that passes puts me closer to Wednesday, which in turn puts me closer to Capital K Knowing. I’m finding it’s one thing to know you have cancer in this vague sort of way. Seems we caught it early, but possibly not. Seems not to have invaded too much surrounding tissue, but we’ll find out. Don’t know which hormones it’s recpetive to, so don’t know which of the many treatments are indicated. Just know I have the big C. And while I usually hate more than anything not knowing as many details as possible, there’s also a way in which it is comforting. There’s hope in the not knowing, or in the Only Vague Knowing. It’s still within the realm of possibility that I could wake up on Wednesday after surgery and find out the cancer was much smaller than expected, and was taken care of by surgery. I could still find out that no lymph nodes were involved, or no further surgery or chemotherapy will be required. There’s still plenty of reason to be optimistic. So like I said, it’s one thing to know you have cancer in a vague sort of way, and another to know all of the details.

After I Wednesday, and certainly after I get the pathology results back, though, I’m locked in. The optimism could be replaced by sheer happiness at fantastic news. Or. And it’s the Or that has me temporarily enjoy the Only Vague Knowing and fear the Knowing.

So a run-down of Wednesday. First, I check in super early to get an injection of radioactive blue dye. This will travel to my lymph nodes to make it easier for my surgeon to find them for a biopsy. I will then be taken to the imaging facility, where a series of wires will by placed via ultrasound, guided by clips (or as the radiologist called them, internal bling) that were placed during my second biopsy, to make the cancer easier to find during surgery. Then surgery, in which they will hopefully remove all of the cancer, plus a margin of clean tissue all the way around, just to be sure, and take a biopsy of my lymph nodes. Then I wake up and hopefully don’t become dependent on pain pills.

Then I wait. So I can Know. I’ll tell you how it goes.