Category Archives: Uncategorized

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.

Good news/bad news

First off, I want to thank everyone for the mountain of well-wishes and sweetness I’ve received. From people who don’t know me but found my blog, to family members who waited in the waiting room or by the phone, and everyone in between, I’ve been humbled and overwhelmed by all of the messages of hope that were sent my way. That had to have helped. At the very least, it made me feel loved during a time in which I needed a little love.

The first few days were pretty intense, and are very blurry in my memory. I woke up groggy and numb, but aware enough to recognize an old neighbor among the many nurses milling about the post-op room. (What a nice surprise!) For the most part, the hospital staff was all very helpful and professional. I will say that my first floor nurse was a little socially inept. Once finding out I was a psychologist-in-training, she wanted to have an in-depth conversation with me about helping her friend through the grieving process (mere hours after my surgery), and at 2AM tried to insist that we sing my favorite song. When I wouldn’t, she proceeded to pick “Hakuna Matata” from the Lion King to sing for the rest of her shift, trying to get me to join in. That’s when I pressed the morphine drip for some extra help with coping.

The drains coming out of my body having been the hardest part. They are uncomfortable and always in the way, besides just being disgusting. My hope is that I’ll get most (ok, if we’re taking hopes, I’ll go for all) of them removed this next Tuesday at my post-op appointment. My surgeon said the chances of having them all removed at 2 weeks post-op is remote, but I’m hoping anyway. I’m not super looking forward to the act of having them pulled, but I can’t wait to have them gone. All in all, though, my recovery hasn’t been all that painful. For the last few days, I’ve only used my painkillers at night. I’m a little more active each day. Key word here is little; today my big activity, which wore me out, was a 5 block walk. Every day, though, feels a little easier, and I feel a little closer to myself. So far even emotionally I feel just fine. The trick now is not to overdo it — I’m supposed to be restricting my arm movements as much as possible at this point, and that’s hard to remember sometimes. However, this is absolutely made easier by my sweet family. My mom and sister have both taken their turns staying with me and waiting on me hand and foot, and Brian has become an expert in caring for my drains while minimizing the pain.

So, since surgery, I’ve gotten both good news and bad news. I’ll start with the bad news, because I think the good news is bigger and more important.

In my post Two steps forward, one step back, I talked about how my heart had been damaged by the treatment I had been getting. The hope was that my heart muscle would strengthen within a month, and I could resume my treatment the week after surgery. On Monday, I went in for an echocardiogram to see if that had happened. It hasn’t yet. My oncologist got me in to see a cardiologist right away, but turns out there was a good reason why he had an opening the next day; he was quite possibly the worst doctor I have ever seen. He came in wearing a track suit (I will readily admit that I might have found this endearing had I liked him), rarely made eye contact, interrupted me every time I spoke even if I was answering his questions, and questioned every piece of my (very standard) treatment plan, including the fact that I’ve gotten both a lumpectomy and a mastectomy. He also admitted to me that he knew really nothing about cardiomyopathy that is caused by chemotherapy except what he had read that morning, and that he hadn’t read much. He then went on to tell me that (despite admittedly being ignorant on the subject), I would clearly be foolish to continue with any of my treatment plan, including radiation, and if I did I wouldn’t last twenty years. He did a lot of derisive head shaking and very little listening. I wasn’t impressed, and won’t go back.

So my oncologist and I have come up with another plan. We will give my heart another month to recover. I feel good about this, since during this month, my heart won’t have to undergo a major surgery like it did the last. In the meantime, we will find and schedule an appointment with a cardiologist who specializes (or at the very least is familiar with) chemotherapy-induced cardiomyopathy. This will likely be in Spokane or Seattle, since Missoula doctors need to be a little more generalized. If my heart doesn’t “bounce back” within a month, I’ll see the specialist. If it does, I can cancel if I like. I’m pretty confident we can figure this out, and that this is just another hiccup in an otherwise pretty smooth process. From the (somewhat limited) research I’ve done, this isn’t a rare hiccup in my specific treatment plan, which, like I said, is the standard treatment for the type of breast cancer I have.

Okay, now for the good news. Remember how I was lamenting that some stranger was going to dissect my breast tissue for evidence of disease? Turns out, that stranger is my new BFF. My surgeon called me late last week and told me that they found a little bit of DCIS hiding out in the ducts. That’s not a surprise — we knew we hadn’t gotten it all during my first surgery, and while DCIS is localized and practically precancer, it also isn’t very receptive to chemotherapy. But so, it’s fine that it was there, because it’s gone now, due to my mastectomy. In the right breast, there was nothing but benign tumors. In the lymph nodes? Nothing. Remember that two of my lymph nodes were positive for cancer before, so there was this potential it could have spread throughout my body? Well, it doesn’t look like it did. It looks like all of those months of chemotherapy, all the nausea, all the fatigue, all the irritation and terrible itching…. those months were worth it. They did their job. And because the DCIS that was found has been removed… it’s possible I’m cancer free right now. We still plan to do radiation, in case there’s some undetected rogue cells somewhere, and because that’s part of the treatment that’s associated with the most positive outcomes, but it’s possible I have no undectected, rogue cells. It’s possible I’m sitting here, typing, for the first time in who-knows-how-long, without a trace of cancer in my body.

And that’s worth all of it.

Through Surgery!

For all of you who have been waiting to hear about Lauri’s progress, as of about 5:00 pm, she is out of surgery. Everything went well – Dr. Moline reported that it was all positive – and she is alert and doing fine. Brian and our parents are with her right now as they wait for her to be transferred to her hospital room. She’ll be at Sacred Heart in Spokane tonight and tomorrow night and then Lauri, Brian, Miko and our mother, Shirley, will drive back to Missoula. Our mom will be with her for the rest of the week while she recovers at home and I will be with her next week.

Lauri was admitted this morning at 10:30 am. Her surgery was scheduled to start at 12:30 pm, which it did.

As I get any additional updates, I will post them.

Thank you so much for all of your kind thoughts, words, deeds and love. I know that it has really eased the hearts of Lauri, Brian, Miko and the rest of us. Knowing that Lauri has so many people’s kind intentions supporting her through this experience is a real blessing.

Anticipating surgery

I’ve been struggling with how to write this post for some time, knowing that it was inevitably coming. On the one hand, this feels so incredibly personal to me, and I feel some unease in talking about it in this somewhat public medium that is read by people with whom I normally maintain some sense of boundaries. Like my professors. Or my parents. Or Miko’s teachers. And on the other hand, writing this blog has been such a gift to me, for which I have been doubly reinforced. First, by the act of writing itself; sharing my personal process has been instrumental in moving me through it. Creating something, even if it’s just this electronic account of my feelings, during a time in which it is all too easy to only think about sickness and death, has fed me in a way I can’t quite describe. And second, by the gracious and generous responses I get from people who read it. I feel so priveleged that I get to put this out there, and that people actually take their valuable time to read it, and then convey to me their reactions. And so because of all of that, it has been really important to me that everything I write here remains absolutely authentic to my experience, even if that feels a little uncomfortable at times.

So, what feels so uncomfortable? Well, up until now, I’ve been talking about my cancer in this somewhat generic way. Despite the differences in treatment protocols, really, this experience could be relevant to people with lots of different types of cancer. But today, I’m talking specifically about something I keep pretty hidden, about my breasts themselves, rather than the cancer inside them (ok, it’s just inside the left one, but I’m having both removed, so I’m talking about both here). And it feels uncomfortable to be trying to talk frankly and openly about something that is so sexualized in our society, to an audience that includes people with whom I am generally more guarded. Maybe this indicates some level of prudishness on my part, more than I recognized before. Regardless, I’ve been struggling with this post. So I’ll just talk about my fears as thoroughly and authentically as I can, and hope that I won’t cringe later.

On Monday, (yes, 11/11, checking in at 11) I will have both of my breasts removed. While this may seem obvious, it keeps occurring to me with a start that they will be gone permanently. Not just until treatment is completed, which is sort of what feels like should happen, but forever. These parts of my body that are so personal and private to me, will first be taken to a lab to be coldly and clinically dissected for evidence of disease by someone I don’t know and wouldn’t recognize me on the street, and ultimately just be added to biohazard trash, along with needles, gauze, plastic bits of disposable medical equipment, etc. Someone who I don’t know is going to see and touch my breasts without me there to give permission, and then will throw them away. That feels unreal to me. And more than a little unfair.

And these parts of my body, they mean something to me. I actually like them. They feel more integral to who I am than, say, my elbow or my little toe. I think that’s in part because they are a huge symbol of my personal gender identity. Maybe this feels counterintuitive, since I joke so much about how little attention I put toward valuing my appearance. But for me, it’s maybe because of that fact that they are important. They are the one consistent part of me that make me feel feminine, and I like that. They do this without requiring me to put on make-up, do my hair, or put time and thought into my wardrobe. So they’re like my lazy femininity (which, now that I think of it, is an apt description of my gender identity itself). But the point is, this personal and important part of my body will be gone forever in less than a week, and I’m experiencing that as a profound loss. I hear other women experience this same process somewhat eagerly, like they can’t wait to have their diseased breasts removed. And that makes sense — the surgery is literally lifesaving. But that’s not how I feel. I am definitely grieving.

The other main thing I’m feeling is dread. Dread about a few things, the first of which is my appearance. Let’s face it, I don’t have a boyish figure, so this post-mastectomy look isn’t going to go well. I will have no curves up top, will still have my ever-growing mid-section, and my surgeon just told me that my chest bone protrudes more than that of the average woman, which will be more obvious after surgery. Lovely. People keep asking why I don’t just wear prosthetic breasts if I’m so concerned about how I’ll look. And I get it, easy fix, or so it seems. But for those who know me well, know that I have the tendency to be overly literal, to over-explain things that don’t actually need explanation. When I don’t, it feels like I’m not telling the whole truth. And that’s how prosthetics feel when I think about them. Like I’d need to explain to everyone I come in contact with that they’re not actually my REAL breasts, should the subject come up. Not that I generally (or ever) engage in conversations with just anyone about my breasts, but the feeling is still there for me. It’s also the downside of having been so open about my treatment. Everyone knows that I am having a double mastectomy, so wearing prosthetics feels like an extremely transparent lie. I recognize this as a strange little quirk of mine, and I don’t feel this way about others who choose to wear prosthetics, but I have decided that if it doesn’t feel authentic, I can’t do it. So, I’m left with this impending body shape that our society views as weird, and I’m finding I care about that more than I thought I would. In fact, as I get closer to surgery, I rarely think about it without crying. And I think about it a lot.

Related to that, I also dread seeing people for the first time after surgery. It’s like how I felt about seeing people after going bald, only more pronounced, because it’s forever and way more personal. I’m dreading the first inevitable, furtive glances that people who know me will naturally give me, curiously taking in the difference in my appearance. I’m dreading the urge I will have to scan their faces for signs of pity, and the defensiveness I will feel when I find it there. I’m dreading hugs. Hugs will feel different. Closer maybe? Less soft? Physically uncomfortable and/or painful? All of that plus more I’m not thinking of, and yet I know I’ll want the hugs. Or at least I think I will. I’m a hugger.

I’m scared about how I’ll feel emotionally after surgery. To wake up, and take that first look myself, and have it all hit me. Because while it feels real to me now, I’m aware that I have no idea how it will feel until after surgery. And so all of this, all of these reasons for dread will no longer be hypothetical, but will be my new reality. And it feels like that will likely feel like a sad reality, at least at first while I adjust. I’m scared that the adjustment will take a while; I talked to a lovely woman the other day who spoke openly to me about her mastectomy three years prior, and she still choked up. I don’t want to be sad about this in three years. I want to be happily engaged in my post-cancer and post-grad school life. But life keeps showing me that I don’t always get to pick how things go.

The most recent thing I’m feeling is this unease related to time. Not only are the days until my surgery flying by, but it just occurred to me that, practically, I have less time than others. Three or fours fewer hours. For my family waiting at the hospital, or others waiting elsewhere who are aware of the time that surgery will take place, they have all of those hours until surgery is over. I have until I get anesthesia. Then I wake up without experiencing the interim. And while I of course don’t want to be aware of the act of surgery, I’m feeling a little panicky at the idea of losing those hours. Those are my hours, and I don’t get to experience them. They are being taken from me, just like my breasts are, and I can’t do anything about it.

So this is how I’m anticipating surgery. This unease, this dread, this grief, punctuated by moments of just wanting it to be over, open to the possibility that maybe I’ll feel just fine and will actually like my body more. Until I know that, though, my breath catches more, my attention jumps all over the place, the lump in my throat grows.

As a practical matter, for those who are nervous with and for me, my sister will update my blog on my surgery day, after she hears how it went. Hopefully she won’t abuse this responsibility and share stories or pictures of my painfully awkward teen years, but she’s an older sibling, so who knows.

Two steps forward, one step back

It feels like I keep taking two steps forward, and one step back. I mean, maybe it’s one step forward, two steps back, but I like the first one better, because it’s less discouraging. So let’s call it that.

I found out this week that I have to discontinue one of my treatments, at least for a month. I described in my last post, Done., that although I’m done with chemo, I still am scheduled until July to take an antibody called Herceptin, which specifically targets the cells that create this overexpression of a certain protein that makes my cancer so aggressive. The great thing about this drug is that is has shown to be wildly effective in successfully beating the type of breast cancer that I have. So while it was scary to find out orignially that I have aggressive cancer, I felt lucky that it was this specific type (HER-2 positive), because that made it more treatable than others.

The bad thing about this drug is that in some people, it causes damage to the heart. This is what happened with me. A few weeks ago, I started feeling that I was becoming winded just too quickly, and sometimes felt some chest pressure. My doctor wanted me to go to the ER, and see if I had a blood clot in my lungs, so I did. They did a chest CT, and found nothing of concern, really. Well, maybe a suggestion of a little something, but since I was scheduled to have an echocardiogram the following week, my doctor just ordered some extra views to play it safe, but nothing to worry about. (At this news, I said, “Oh, great, so basically I just went to the ER to be told I’ve become fat and out-of-shape?? Super.”) Turns out, though, there is a decline in my heart functioning. Specifically, my left ventricle isn’t pumping like it should.

There are a few possibilities here (that I know of). The first is that because I had that really awful chemotherapy (Adriamycin) at the beginning of the process, the one that made me so sick, followed by the Herceptin (both of which are associated with damage to the heart muscle), then my heart is permanently damaged, and I will have to discontinue the Herceptin for good. The other is that, as sometimes happens, the cells in my heart are something my doctor called “stunned,” and just need a break from Herceptin, hopefully just a month. I like the second one better, because it allows me to continue with the standard treatment, associated with the most positive outcomes. So for now, I no longer take trips into the infusion room to get my dose of Herceptin. Instead, I take two blood pressure medications (even though I have very low blood pressure), in order to protect my heart. In a month, I will do a repeat echocardiogram, to see if it worked. Of course, this will be exactly one week after surgery, and will require me to lie on the side on which I am having my lymph nodes dissected (located at my left armpit), so I’m not super excited about that day, but I’ll gut through it, if it’s at all possible. I guess the other thing is that my surgeon is out of town, so she hasn’t weighed in on whether I can still have surgery as scheduled. I’m trying not to contemplate that possibility too much, because the consequences of leaving any residual cancer in there, untreated, sounds too scary right now. Plus, my medical oncologist (Dr. Scott) feels pretty confident that my surgeon won’t change the date.

So, should my heart not recover like Dr. Scott is predicting, I have to stop the Herceptin for good. Like I said before, this is scary to consider because instead of having the aggressive-yet-more-responsive-to-treatment type of cancer, I’m just left with… aggressive. However, we don’t actually know how little of this stuff you can get away with, and still have the same positive effects. In fact, there is a small Finnish study that indicates that getting nine weeks of Herceptin is as effective as a full year. Of course it’s a small study, and it’s just one study, but I’ve had 13 weeks of the stuff, so I’m trying to find hope in that.

I can’t help but be reminded that I have been talking a lot about how happy and proud I was that I got through all of my chemo without having to stop. Kinda feels like the Universe is telling me to Calm the Hell Down, not get too cocky. If that’s how we’re playing this, Universe, I would like to publicly retract all conversations I’ve had recently in which I’ve expressed surprise at what a quick healer I am, and how I’ve found all of my surgical procedures to be less painful and uncomfortable than I anticipated. I’ve ended all of these conversations with a (perhaps foolish) prediction/hope that my double mastectomy might not be as bad as I’m anticipating. In preparation for this huge surgery in a week and a half, I would like the Universe to hear that I recognize it could be very, very difficult.

For my part in this, I will work out my heart muscle every day, regardless of how tired I feel (I mean, until surgery). And hope. Hope that in about a month, that repeat echo shows that my heart has regained it’s original level of functioning, allowing me to restart my Herceptin treatments, and therefore be more confident that I am marching toward a cure.

Done.

Done. Done. Done done done done. Done done. Done. Done done done. Done. Done. Done. Done. Done done done done. Done done. Done. Done done done. Done done done. Done done. Done. Done done done. Done. Done. Done done done done. Done done. Done. Done done done. Done. Done. Done done. Done.

Well, kinda.

I had my last chemotherapy treatment on Thursday. My Last One. I’m trying to let that sink in, and feel the wonderfulness of it, but right now, I feel 20 weeks of chemicals and steroids coursing through my body. So while I am DONE with chemotherapy, it’s not quite done with me yet. And this last one was a doozy. If I didn’t know better, I’d think maybe they gave me a triple shot of the stuff. As it was, my doctor informed me that many people who get this treatment don’t make it through their full 12 weeks before their bodies can’t take it anymore. By week 8 or 9, they have to start trying other drugs. I can see why. It sort of feels like I got all 20 weeks, both drug combinations, in one last hurrah, just to give it that final kick. And with the last dose, I feel a return of almost all of the side effects, even those from the first eight weeks, when I was on a different drug combination: weird vision changes, heightened senses, queasiness, tingling feet, itchy hands, extreme fatigue, dehydration despite my best efforts, dizziness, agitation, inability to concentrate, extreme emotions, and other stuff I’m not recognizing because crappy is the new normal. So I can see why others don’t make it to the last dose of this combo, and I’m so thankful that I did. Because my other option was trying a new drug, and the new side effects that come along with it, instead of the ones that I know. And, worse yet, that other option meant suffering through those new side effects, knowing I’m only getting the second choice, or third choice of treatments, and worrying that it isn’t good enough, that it won’t work. I’m not sure I could have handled that.

So while I’m feeling like I’ve been hit by a semi right now, and can’t really celebrate being done, I am trying to recognize the smaller milestones that come with being done. I had my last Night Before Chemo, in which I lie awake and dread. I had my last Day of Chemo, watching the chemicals drip into my veins, noticing my body feel increasingly buzzy and poisoned and weak as the hour goes on, feeling my energy slowly drain. My last dose of steroids… ahh.. that’s a big one. I mean, literally, since I took an extra dose to help with the itching this week, but knowing it is my last? That’s a gift. So that means maybe my swelling has finally hit its peak. And my emotions can return to my regular baseline. Mostly, it means that I never again have to walk through the night after chemo, and day after that, in which I can’t sleep but am ridiculously tired. And Everything feels catastrophic and so incredibly sad. And I lash out at the people around me. And the lashing out makes me feel lonely and guilty, because I’ve pushed people away who are only wanting to be there for me, but they Just Can’t Know How This Feels. I don’t have to do that again.

And as I’m experiencing my side effects, I can tell myself that right now is the worst I’m going to feel. I haven’t been able to say that in 20 weeks. Almost 5 months. 20 weeks of always knowing I could feel worse at any time, even when worse is unimaginable. 20 weeks in which I went from wondering when it would finally sink in, when I would know what it really felt like to have cancer, to not really remembering what it’s like not to have cancer, and to wonder if I’ll ever feel healthy and energetic again. (Okay, let’s be real, I’ve never actually been known for having an abundance of energy, but it’s all relative, right?) But I can say that now. I can say that tomorrow might be better, and in a week I might feel pretty good, and in two weeks, I might be rejoicing in how normal I feel. That’s a realistic thing to say.

And just thinking that, just writing it and sharing it, that is such a gift. Such a wave of relief. I am getting myself back, starting now.

Frequently Asked Questions

*Disclaimer: This title may be misleading. It should probably read, “Questions I’ve been asked at least once, and/or feel like answering today.” But that just didn’t have the same flow*

You’re almost done with chemo! Does that feel great??!!?
No. And not because I want to keep heading into the infusion room with my fellow baldies to have chemicals pumped into my veins. It’s that although it sounds to everyone else like I’m almost done (well, because I am almost done), it doesn’t feel that way to me. It feels like I’ve run most of a marathon, but still have the last mile left, and it’s uphill. Not that I’ve ever run a marathon, or even a 5K, but my sister has, and she describes that last mile like that. Or maybe it feels like I’ve been run over by a series of trains, and there is still one left, only it’s the longest one. The effects of the cocktail of drugs I’m currently on are cumulative, and I’m just. So. Tired. And cranky. And emotional. And beat up. And swollen from the steroids they give me to prevent an allergic reaction (which only kind of work, because I still have bouts of incredible, mind-numbing itching on my hands and arms that sometimes bring me to tears, and makes me look like I’m on meth. Except without the energy of a meth user).

Also, to be precise, even though next week is my last dose of chemotherapy, I still have to take a trip to the infusion room every three weeks for 9 more months. One of the drugs I’m getting, Herceptin, has the highest success rate if given for a year, and I’ve only put in three months. Herceptin isn’t a chemotherapy, in that it doesn’t attack my healthy cells. Only the cells that create the over-abundance of this certain protein that makes my cancer so aggressive. The good news of that is that the side effects of Herceptin are minimal. I mean, except for possible heart damage. No big deal, right?

The other reason I’m not feeling great about being almost done with chemo, is that the next step is surgery. I’m not looking forward to that. Mostly, I’m not looking forward to how I’ll feel after surgery, both physically and emotionally.

So, after chemo, are you done with treatment?
Nope. On November 11th, I am scheduled to have a double mastectomy. My surgeon will also dissect the axillary lymph nodes on my left side, because she found cancer in two of my lymph nodes during the last surgery. So she will want to make sure it hasn’t spread. Once I am healed enough from that (probably about six weeks), I will get radiation every weekday for six weeks. Maybe five. It depends on how much cancer is found during surgery. Once I have healed enough from that, (probably at least six months) I will start reconstructive surgery, which consists of four procedures. Unless I change my mind about that.

I heard people who have lost their hair to chemo often find it grows back differently. Maybe yours will grow back black and curly?
Actually, (for those who don’t see me regularly) it’s already starting to grow back, foiling my plan to start a betting pool on possible textures and colors. Every day there is more hair, and it’s pretty clear it’s going to be be red again (YES!). The jury is still out as to whether it will be curly (fingers crossed!). Although, I should be careful what I wish for. With my lack of skill, or interest, in how to style hair, it would probably be a disaster. In my head, I could look like this, if I just had curly hair:

in my head

But, let’s be real. I would probably look more like this:

reality

I would post a picture of the how it actually looks right now, if my face weren’t swollen up like a pumpkin. Or if it didn’t look as if I might have a receding hairline, and the hair on the lump at the top of my head might not be growing as thick or as dark as the hair around it, therefore accentuating said lump. No good comes from sharing pictures of yourself like that.

How’s Miko?

Miko is her usual confident, chatty self. She has a big role in a play today, in which she sings a solo, and doesn’t appear to be one bit nervous. Unimaginably, she’s turning 11 on Sunday. 11. When I started grad school, she was in the first grade, almost seven. Now she is a tween, and wants to celebrate her birthday weekend by making an egg recipe she found online from Gordon Ramsay. Love that kid.

 

A political one.

I do this thing every week, as my date with chemo inches closer, in which I start to dread and bargain. I haven’t had enough “good” days, there are too many other ways I want to spend my time, I hate how the steroids make me angry and weepy, I’m tired of the nurses poking and prodding at me, I don’t want to know how the cumulative effects of the chemo are going to make me feel, I want to just skip a week and take a break, or just be done. And then I check myself. Quickly, in case The Universe is listening. And I make sure and sit for a moment in gratitude. Because I’m one of the lucky ones. I’m the one who has the privilege of whining about the side effects that she is experiencing due to her life-saving medications. And the one who is lucky enough to be burdened by all of the medications I take to counter the side effects. I am the one who looks at the Explanation of Benefits (EOB) that my insurance company sends me weekly and experiences curiosity rather than panic. Hell, I get EOBs. I have some bills, sure, because of my deductible, but even that was pretty low, relatively speaking. So I don’t have to make decisions about which treatment, if any, I can accept. Or which bill to pay and which bill not to pay in order to make this work. I don’t have to accept treatment, knowing I will never be able to pay the exhorbitant amount that is charged for it, and make my peace with bankrupcy. I don’t even have to accept a provider that I haven’t thoroughly researched and decided was right for me, because my plan will only allow me a few choices. I really have the best of all worlds.

But I’m constantly aware of how tenuous this luck is. I do this math in my head, this constant recalculation: “If I had to stop treatment now, would I be ok? 6.5 weeks until surgery…. if I keep my benefits through that, I have a better chance of a cure. If I can just keep them through radiation, my rate gets even better. If I can sustain them through the suggested hormone therapy for five years, that’s the best.” And it’s not like I’m in imminent danger of losing my benefits, but, you know, things happen. Every day. Every day, people lose their benefits due to job loss, divorce, death of a spouse, reduction in hours, etc. And I’m acutely aware that although I’m one of the lucky ones now, my luck could run out. I could become these people, who are losing their house because of the cost of treatment over the years. I could become one of the millions of uninsured. I am under no delusions that I have good insurance because I’m more deserving, or work harder or more than others. I just happen to be a part of a family that also includes a family member who is employed by a company that values the health of their employees. And so, because I’m lucky, I have access to healthcare that others don’t. And that makes me angry.

Why, in this wealthy nation, is there such disparity in something so basic as health care? Why should I have a realistic hope at having my cancer cured, but someone down the street with just a little different luck (ok, a lot different luck) should not? More to the point, why are some of our elected officials, who enjoy premium health benefits at our expense, working so damn hard to make sure the disparity continues? 42 times. 42 attempts at repealing Obamacare. 42 times they could have been improving Obamacare, or our education system, or our military, or our gun laws, or poverty, or, or, or, or. Instead, the party of the self-proclaimed fiscal conservative decided to spend an ungodly amount of money on 42 attempts that their own members say won’t be successful. So what’s the big problem? It doesn’t do enough? Agreed. It was the compromise. Too expensive? Well, A) if you’re so concerned about money (you being the elected officials I’m railing against here), stop wasting money by trying to repeal Obamacare just to prove you can stomp your proverbial foot louder than the person across the aisle, and B) do you think our current system is free? Who do you think pays the bills of the people who get emergency care, but can’t afford it? The people who could’ve maybe avoided the costly care they’re currently getting with a little preventative care? Who do you think is paying for that? We are. Think people should earn what they get? That’s a lot easier to do if you’re healthy, and it’s a lot easier to be healthy if you have access to healthcare. Makes government too intrusive in our lives? Because that value doesn’t seem to be a priority when the subject is women’s health or marriage equality. Think our healthcare system needs an overhaul? Me too. But in the meantime, people are getting sick, and being denied care due to pre-existing conditions. I very nearly was. Had I gone to the doctor to check out my lump two days earlier, when I was in between insurance companies (because what could go wrong? I’ll just chance it for a few months, since I can’t afford COBRA…), I would have had a pre-existing condition once my coverage started, and been vulnerable to my care being denied. With no means of paying the considerable sum it costs to access healthcare in the US. So back to Why Not Obamacare (and yes, I’m using their term on purpose)… is it just because this is a continuation of Mitch McConnell’s proclamation in 2010 that the GOP’s biggest priority should be to ensure Obama was a one-term president, setting forth an agenda of obstruction? Is it just because this is Obama’s thing, and if it works, then history might smile upon him? Because that’s not good enough. We deserve more. We pay our elected officials for more. And if they can’t do better, if they can’t improve upon an idea, we at least deserve debate. Good, honest, well-intentioned debate that isn’t funded by the Koch brothers and isn’t filled with misinformation intended to scare us rather than inform us.

So I’m aware this is a scattered post filled with more emotion than with articulate, fully-reasoned arguments, but that’s kinda how I am right now. I could, and probably should, flesh out all of these arguments and provide links to cite my sources. But I’m going to cheat instead. Because I’m tired (playing the cancer card, yes), and because so many others have said it so much better than I can. Most recently (but certainly not confined to her), Krystal Ball sent out a plea to the moderate conservatives, the ones who aren’t falling for the deceit and the greed, to stand up to their elected officials. If you haven’t seen it, click here, it’s worth a watch. Others have debunked the various lies that have been spread as scare tactics, and others have just tried to appeal to our better natures. All of them are readily available everywhere you look (ok, probably not so much on Fox), and all of them are more articulate than myself. Which perhaps makes this post a waste of cyberspace, if I’m not saying anything new. Because I’m not. But I am saying that I am so grateful to have the luxury of dreading my healthcare, and am incensed that to others, my bald head represents an unattainable wish rather than just a side effect.

Confessions of my ridiculousness

I’m sure we all have our own ways in which we are ridiculous. Maybe not — maybe it’s just me. In any case, there are a few ways in which my own ridiculousness keeps popping up lately, over and over, mostly in the form of problems that have solutions for normal people, but not solutions I am likely to utilize. (If you look at it this way, some might see fit to substitute ‘ridiculousness’ for ‘laziness’ here.) Since I have some extra time and nothing else to write about, I thought I’d share them. I’m considering it somewhat of a public service, because this should make you all feel a little better about yourselves, a little more well-adjusted in comparison.

I often get the comment that I’m brave for showing my bald head publicly. My reaction to this is generally surprise or confusion. Does said person not really know me? Is s/he under some misguided belief that I have the patience or interest in keeping up my appearance? (and if so, does s/he pity me that this is the best I can come up with??) The truth is, I don’t bare my bald head because I’m brave. It’s not like I’m scared to go bald, but do it anyway to make a statement for cancer patients everywhere. A more accurate description would be that I am some combination of lazy and comfort-driven. I mean, come on! It’s summer! I’m hot all the time. And I hate feeling hot; I am from Seattle, where mild temperatures reign. So there is very little chance I am going to add to that misery by donning a wig. Maybe a hat. Every once in a while a scarf if I’m feeling fancy or motivated, but I don’t really have the skill or the patience to pull that off like a normal person would. Also, I often forget to look in the mirror, so I’m usually blithely unaware of how I might look to others. Don’t get me wrong, I’m terribly flattered that anyone might find me brave. I’m just saying, that’s not what’s motivating me. Comfort motivates me. Laziness guides me. The one exception? Miko’s first day of school. Apparently that’s where I draw the line of apathy for my appearance. I made a special shopping trip (a rare and dreaded activity in my world) to buy a new hat to wear at drop-offs and pick-ups. By the second day I dropped her off while bald. Hats make me sweaty. Also, I forgot to look in the mirror.

Instead of sticking a needle in my arm every time I need to have blood drawn or get chemo, the nurses access my port. This is a nifty little device that sits just under my skin below my clavicle on my right side, and is used for infusions. It used to look like a round bump, but now that the swelling has gone down, you can actually see the edges and prongs of the port, and it’s pretty disturbing. It’s clearly not supposed to be there, and the more I look at it, the more anxious I get about it (which, in turn, causes me to look at it more, like the car crash phenomenon). The more the port protrudes, the more certain I am that if I lie on my right side, it might just pop out of my skin. The nurses assure me (every week) that this can’t and won’t happen, but just looking at how pronounced it’s become, I’m not always certain I believe them. So what do I do to ease my anxiety? Sleep on my back? Or my left side? No. I continue to sleep on my right side, because it’s more comfortable, and somehow, changing my sleep position feels like too much work. The bonus to this is that every morning I get to wake up and feel pleasantly surprised that my port did not, in fact, pop out of my skin.

My double mastectomy is coming up (in two months). I’m increasingly focused on how I’ll look afterward. I’m self-aware enough to know I won’t do anything about it, so it’s not like I’m planning accomodations or anything. I’m just recognizing that in two months, my already-present body issues will become more pronounced. Essentially, I spend my time actually planning to feel self-conscious, rather than planning ways to make myself feel better. Ridiculous. See, I don’t have a boyish figure. So, this no-breast look is going to look absurd. It just is. Combined with my bald head, and the fact that I gain weight predominately in my stomach, I’m certain I will look like a pot-bellied, middle-aged man come November 11th. I tell this to friends, who laugh nervously (while conspicuously not making eye contact) and tell me that I couldn’t possibly look like a pot-bellied, middle-aged man. But I’m skeptical of their honesty. I’m reminded of a close friend who told me that once I lose my eyebrows, I should draw them back on in outlandish and/or pronounced ways, and see which friends allow me to leave the house that way. Are the same friends who say I won’t look like a pot-bellied, middle-aged man the very ones who would allow me to be seen in public with drawn-on super surprised eyebrows? If I were brave, I’d do an experiment. But I’m not. And just so we’re clear, yes, I’m aware there are several “fixes” to this man-looking problem (wig, prosthetic breasts, new clothes, etc.) But let me just refer you back to my apparently stable personality traits of laziness and apathy, and remind you that those fixes are highly unlikely to ever occur for this girl. That just sounds like too much trouble.

A part of me (okay, most of me) is mad I haven’t gotten cancer-skinny, like you see in the movies. I’m aware of how insensitive this sounds, especially for those who have struggled to keep weight on while their disease ate away at their bodies. But I was just kind of hoping, you know, a silver lining might be that I finally lose some of this weight that I have sort of tried to lose every once in a while, on and off, when I didn’t feel like a snack. Instead, I’ve gained weight. Every week when I see my doctor and complain about it, she is a little less patient with my concern, and reminds me that she is doing every thing she can to ensure that I actually don’t lose weight while I’m on chemo. I thought she could throw a sister a bone or something, but apparently not. So my clothes don’t fit, but I refuse to buy new ones, since my shape is about to drastically change, anyway. The other reason I can’t lose weight (aside from my affinity for ice cream)? If I want the option of reconstruction without implants, I have to maintain a certain level of belly fat. The surgeon will “harvest” the fat from my abdomen to construct my new breasts. (I’m not going to lie, I’m sort of in love with this fact.) Which, makes me sound like a farm or something, and brings to mind the saying “you reap what you sow.” I’m sowing plenty. Hopefully that works out, and I end this ordeal with a rockin’ new bod.

As I read this, I’m aware my mother will probably see it and worry that I need some affirmations, maybe a reframe or two to tell me I’m not ridiculous, but just right. Don’t worry, Mom; I’m ok. Although, a little Mama-love is always welcome.

41

For months, I’ve been saying how much I hate 2013. It’s just been one thing after another, and as much as I don’t wish my life away as a general rule, I’ve been waiting for 2014.

Then it hit me: the crap didn’t start in January. It started about when I turned 40. When I was about to turn 40, everyone was asking me how I was going to celebrate this big milestone. To which I’d answer, “I’m studying for comps.” In my program, after we defend our Master’s, we have to take these comprehensive exams so we can be continued on to pursue our doctorates. They last two eight-hour days, and can be on basically anything we’ve learned in grad school. They suck the life out of you. I took mine exactly one week after I turned 40. Thing is, you don’t just bounce back from taking comps. It takes a good while. I used to say I wasn’t the same the whole rest of that semester, didn’t have the energy to focus on anything else. In retrospect, though, since my cancer was advanced by the time I was diagnosed, it’s possible my low energy was due to the cancer…. sorry to anyone who hadn’t yet taken them, who I might’ve scared. Oops.

After taking comps, a favorite great aunt died, my brother was told he was dying, he died, I got diagnosed, the cancer was worse than originally thought, I had surgery and chemo. Like I said. One thing after another. I’ve been stressed, overwhelmed, heartsick, physically sick, scared, grieving, numb, angry, you name it. So, being 40 started with comps and ended with chemo. Yuck.

And yet. It’s not quite fair to describe my year that way. It’s not the whole truth. Because through each and every one of those things, I’ve been loved. When my cohort took comps, our classmates brought a ton of wonderful food and encouragement to see us through. Seriously, it included a souffle. When we found out about my brother, I was at my parent’s house with a friend who had never met my family before. She sat with us in our grief, and both said and didn’t say all the right things, making us feel safe and loved, even though she had just had a day-long interview for internship. When my brother died, the celebration of his life was not only well-attended, but stories were shared about him that still make me tear up. And as usual, my cousins surrounded us with all the love we could take. When I was diagnosed, my classmates gave me love, even the self-professed non-huggers. The professors cried with me. Really, more than one. Both classmates and professors have brought me food while I’ve been sick from chemo. How many grad students can say they’ve been supported by the people in their program so lovingly? My family, both immediate and extended, has been steadfast in their show of support, doing everything they can think of and anything that was (is) asked of them. I’ve gotten gifts in the mail from friends I haven’t seen in years, hats made for me to protect my bald head, and more loving messages than I can even count. And 40 didn’t actually end with chemo, if I’m going to be precise. It ended with a wonderful visit from my sister and brother-in-law to celebrate my birthday. What could be better than that? Really, considering the circumstances, I couldn’t ask for more. So while it’s true that I’ve felt stress, illness, grief, fear, all those things, it’s also true that I’ve also felt all this love. This love that pervades every single day, and that I would not have experienced or really even known about had it not been for all of the pain.

I was more than happy to say goodbye to 40 this last weekend, and have decided that 41 will be markedly different. But I am also feeling fortunate to have had this last year. It was hard as Hell, sure. AND there was also so much sweetness. But more importantly, I think it taught me something more important than tallying up the good vs. the bad. Something like, it was mine. I got to feel all of those things. I got to experience them. I got to learn how to face my pain. It wasn’t a year to drift through mindlessly, but one that wakes a person up. It made me grateful for all of my experiences, and recognize that my life is richer for having had each and every one of them.

Bring it on, 41.