Tag Archives: chemotherapy

things unexpected

I’ve been forming a blog post in my head for the last several weeks about various unexpected things that I learned from this tussle with cancer, but a few things have stopped me. First, if I write that post how it keeps popping into my head, it feels like an end. And there are still things I think I want to say. Some of them I don’t know how to say yet, and some of them haven’t formed, but I can feel them there, waiting to come out. In any case, I’m not quite ready for the end of blogging yet. Maybe soon, but not yet. And second, I can’t really get past the first two items that would be on my list of things unexpected that I’ve learned, or decide if they are actually  separate. So maybe I’ll just talk about them for now.

Before cancer, whenever anyone went through something difficult, I liked to comment that if I had to go through the same situation, I would melt into a pile of goo, unable to cope. Not because I needed validation from whomever I was talking to, but more because my self-deprecating nature delighted in that vision of myself, quivering in a gelatinous blob. And also, it just felt accurate.

But now, that visual doesn’t feel right. At least, not anymore. Not to describe post-cancer Lauri. And that surprises me. I didn’t expect it. I didn’t expect that I would be able to handle everything that I have. I didn’t expect that the experience of cancer would both be as difficult as it was AND manageable. One or the other, but not both. I didn’t expect that chemo would be hard in the many emotional ways that it was. That the steroids and fear would leave me so agitated and on edge, that I would, on some days, take an anti-nausea pill as much for the emotional escape that sleep gave me as for the nausea. (This topic is another post, because it is a part of cancer treatment that goes undiscussed all too often, but it also needs to be said here, so I can’t avoid it). I also didn’t expect that I would be able to recognize that when it happened, and tell myself, “No more.” And actually successfully follow through with that. I didn’t expect that the hardest part of surgery for me would be the complete reliance on others, and not the pain or the drastic change in my body. I didn’t expect that if the worst-case scenario symptoms of radiation happened to me (which they eventually did), that they wouldn’t really slow me down. And I just didn’t expect, when I got diagnosed, that the experience of cancer and its associated treatments would leave me feeling so much stronger than I ever have. I mean, to be fair, I’ve always defined myself as a wimp, so stronger than that isn’t much…. but I do feel strong now. Very strong. And as a result, very happy.

The other item on my list of things I’ve learned is that although the world can be unrelentingly cruel at times, and it can, it can also provide balance through humanity. I know I’ve blogged about this to the point of sounding like a Pollyanna, but it’s just been my experience, and I can’t talk about my experience without being brought back to the beauty and care that people have surrounded me with. People have been so incredibly selfless and loving. Some of them were expected and reliable and comforting, and others were complete surprises, in a breath-catching way. But more and more I realize that maybe this is the secret to my newfound strength. It isn’t that I can handle anything that the world throws at me (And just to be clear, Universe, I really don’t want to test that out, thanks), but that I’m surrounded by such good people, that I don’t actually have to handle much alone. And the things that I do, the physical things, well, those are made more bearable by knowing I have the support of so many lovely people. Maybe my strength isn’t about me being an island of strength like I always imagined it to be, always admired in other strong people, but about allowing myself to access the strength and help of the people around me, and in keeping that circle filled with loving, reliable people.

And maybe that’s what I want it to be. I really don’t want to walk away from this with an arrogant swagger, feeling prideful in a “keep heaping it on, World, I’ll keep going,” kind of way. That isn’t helpful to anyone else, or to me, really. I want to feel strong in my ability to lean on my people when I need. In respecting my individual limits by my ability to say, “No, I cannot take on another project/client/assessment/whatever-the-job-is,” without feeling like a failure. I want to take pride in the strength of finding balance in my life, giving as much priority to the enjoyment of the people and places around me as I do to the tasks ahead of me. And that’s unexpected for me. I thought that the feeling that came from finding myself capable would be enough. But I’m learning that it’s not. I’m learning that my version of success is embracing my inter-dependence with my circle of people as a path toward true fulfillment. I’m still working on that, but I’m getting there.

my puppy taught me about empathy.

About a week after surgery, I went and saw a cardiologist to address my reduced heart functioning caused by chemotherapy. It didn’t go well. I’ve written about this before, but basically the guy told me I had about twenty years to live with my current heart functioning, less if I went ahead with my cancer treatment as planned. He gave me no ideas on how to help myself heal, derisively questioned my care up to that point, and (perhaps most infuriating at the time), opened my shirt to examine me without warning or permission. Again, this was one week after my double mastectomy, so I was extremely sensitive and protective of my chest. Even had it been before, though, it’s my body, he should ask. Or at least announce.

After writing about my experience, I found out he is actually a friend of a good friend, one who I respect and value. Apparently he’s a very smart guy and does well in his field.  My friend, who is one of the smartest people I know, even called him a genius. Given that information, I started questioning my decision to never return to his office; if he could give me the best care, maybe I should try and stomach his lack of bedside manner. Or any manners, for that matter. But… he’d started out our appointment by saying that he didn’t know anything about my condition, except the one article he had read that morning, so I decided to look for someone with more experience with my specific issue.

Fast forward several weeks, and I found myself with a cardiologist who couldn’t have been more different. She had been suggested to me due to her experience with similar people, both patients and her own family members. She treated me warmly, asked about my life to put me at ease, and reassured me that I could live a long and full life, even if my heart functioning never improved. She talked to me about ways in which I could help myself, which was empowering. She left me feeling hopeful and comforted.

Thing is, when you get down to the nitty gritty of it, she didn’t change the direction of anything he said or the medication he had prescribed, and even agreed that not much is known about what I have. So why was my experience so different? She treated me with empathy. I’ve given a ton of thought to why that made such a difference to me, because it did. Here’s what I’ve come up with: when I was meeting with him, I was immediately put into a defensive mode. While I was trying to listen to him, I was also having an internal dialogue about whether or not I should just leave, if my emotional reaction to him was unreasonable, etc. So I had a harder time hearing what he was saying, or engaging in a conversation with him (not that he let me utter one sentence without interruption, but still). This, by default, made me a passive participant in my own healthcare. It made me feel disempowered. I shut down when I feel disempowered, while I rage internally. He may have the best knowledge his field has to offer, I don’t know. But for me, it was inaccessible, because he didn’t respect me enough to try and empathize, or even show a little compassion. So his knowledge was all but useless to me. She, on the other hand, made it safe to ask questions, share concerns. She made it so my brain didn’t have to engage in a fear-based inner dialogue, and could focus on the information she was trying to share. She made her information accessible to me. She empowered me. I hear her every day when I walk my dog or eat my vegetables or engage in mindfulness meditation. I hear her and am comforted that I am doing all that I can.

Clearly, I’ve been festering about this for a while now, since my appointment with him was in November, and hers was several weeks ago. But it became relevant to me again the other day indirectly, when I needed training for my new puppy. Let me back up a little.  People who provide therapy to kids and their families have a common complaint that parents want to drop off their children with the therapist to “fix them.” To really get at an effective solution, though, parents need to be involved. Otherwise, you’re just sending a child back into a dysfunctional situation. We joke about it, we complain about it, but implied in all of our discussions, as much as we consciously work to be as judgment-free as possible, is, in fact, judgment. Parents should want to be involved in therapy. They should want to do whatever it takes. When we make this judgment, we are experiencing a failure of empathy.

So fast-forward to my need for puppy training. There is this newly adopted puppy in the house, Grover, who is wreaking all kinds of havoc. He apparently has entered adolescence, so his play has changed to include jumping and nipping. When I’m being dramatic, I like to say that he lunges at my jugular with his teeth bared and mouth foaming, but really it’s usually my arms, and he’s never broken the skin. Yet. So, I got to my breaking point, and scheduled a private lesson with a pet trainer. (Who, by the way, was fantastic. If you need one, check out SIT Happens). When we got there, she started her explanation about how dog training is actually about training the owners, and I immediately noticed I was feeling sad and embarrassed. After thinking about my reaction, I realized it was because, if I’m being honest, I wanted her to fix Grover.  I wanted it to be her responsibility. I wanted to go home with a perfectly-behaved dog. What’s more, when I adopted a puppy, I apparently wanted a puppy on my terms. I wanted him to have puppy exuberance, but only when I felt like it. (To be fair, the timing isn’t the problem so much as being used as a chew toy is). I wanted him to be my vision of a puppy, not his own.

But in that moment, I felt for those parents who just want their children to be fixed by the therapists, because I felt the same thing. I recognized the desperation and frustration they must feel. I could feel how at-the-end-of-their-rope they must be to even bring them in. I realized that I hadn’t really understood this before, and that made me sad and embarrassed at my failure of empathy. I have been complaining about how this cardiologist couldn’t show me a little compassion, let alone empathy, when I have been in danger of doing the same thing to my clients myself, without even realizing it.

So now, thanks to Grover, I start a new semester meeting new client families, ready to accept them with empathy. Hopefully, for my client families, I can be the voice that empowers, rather than the one that shuts them down. One that comforts, rather than angers. One that stays with them, because I make the information accessible.

I’m still mad at that cardiologist, though.

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.

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.

The neighbor

So, I’m pretty sure I alienated a neighbor the other day. One of the nice ones. Not that I have mean neighbors, but there are a few who are particularly nice. This one I think of as the “new neighbor,” even though I’m pretty sure she moved in about two years ago. I still have guilt for not bringing her a loaf of banana bread or something to welcome her to the neighborhood. I should probably let go of that, but it’s still what I think of when I see her, cementing her as the new neighbor. Anyway. Here’s what happened:

This last round of chemo was especially miserable. My nausea was so bad, it actually hurt. At one point, drinking water was painful. Not because of mouth sores or anything. More like, stretching my esophagus even for water was too much. To top it off, Brian had to go to Washington to pick up Miko from camp, so I was alone (save for one evening when a good friend saved the day by keeping me company). Mostly, though, I was unable to interact, or pay attention to even a book on tape, so just able to…. lie in bed. Ruminating. Feeling badly, and, quite frankly, sorry for myself. By Saturday evening I just had to get out of the house. My big plan was to go to the store and buy Pringles. Yes, Pringles. I had briefly seen some headline about Pringles contributing to cancer, and all of a sudden I had a craving. (Yes, I’m completely aware of how messed up that is. But really, I could only get about two Pringles down before getting sick, so chances are I’m no more cancer-y than before). Once I got to the store, though, it was more like a frenzy. All of a sudden, I was putting all sorts of things in my basket I’d normally never buy. (Ok, that’s a lie. I’d totally buy them, just not in front of Miko). It was my own ridiculous little rebellion against only being able to tolerate Saltines and water, and not even those sometimes. And then I added a few things like carrots and hummus to make myself feel better about it all.

Thing is, my little excursion was more than I was really up for. It had involved actually getting out of bed, getting dressed, driving to the store, and walking around for about ten minutes, and that’s more than I could handle. So by the time I got home and got out of my car, I was really ready to collapse. Cue my nice neighbor. She hailed me, asking me to wait a second while she put her dog in her yard. I swore under my breath. She bounded over in all of her non-cancer, healthy energy, her face full of concern. To be fair, she has watched me change from a normal (if a tad harried) neighbor who is in and out all of the time, to a slow-walking bald neighbor who rarely leaves the house except for semi-nightly walks in a few months, with no explanation, so I suppose she felt it was time to address it. Thing is, I was in no mood to address anything.

She immediately started in on how she could tell a lot was going on with me, and she’d like to help, do anything. A normal person would have said, “Thank you, that would be nice.” Not me. I started shooting down all of her ideas. Even when she asked what foods I could eat, I told her I couldn’t really eat anything, desperately hoping she couldn’t see into my shopping bag, willfully not acknowledging it when she did glance in the direction of the bag. I told her something like, “People want to cook for me, but it’s just too hard to find stuff I can eat.” This was a lie, really. Plenty of people have brought me wonderful meals, which I’ve enjoyed thoroughly. She asked if she could cook for my family, or babysit my kid. I deflected both. Could she walk my dog? No. In my defense, it wasn’t that I was opposed to any of her ideas. I was just so exhausted, my brain couldn’t think of the words, “All of that sounds so nice, but I’m really tired right now. Could we talk later?” It could only come up with terse rejections of her help, hoping she could go away, so I could collapse. She eventually did, and I ate my two Pringles. They weren’t worth it, by the way.

So, it looks like an awkward apology awaits me in the very near future. Perhaps it’s not too late for that banana bread, after all?

the relativism of feeling good

In one of the classes I took on assessment, my professor started out the class by telling us that tests are dumb. Sort of an interesting way to start a semester completely on assessment, huh? So why am I taking this class if tests are so dumb? But he didn’t mean that tests are useless, he meant that any test can only tell you a very limited bit of information, without other data to give it context. So you give someone a test of depression, and find that s/he has a score of 5 out of, say, 10, well that 5 is just a number. The number becomes more meaningful when you gather more information and find out all the things that might be affecting the score, and maybe that just last month it was a 8 out of ten. Now all of a sudden, the 5 that looked moderately depressed before, now looks inidicative of someone whose mood is improving despite obstacles, or maybe due to supports. So it’s all about context, and in isolation, tests are dumb.

In my own geeky kind of way, I’m reminded of assessment a lot lately. Maybe because people are always taking their informal subjective measures of me: “How do you feel? How are you doing?” And I find that my answer generally has much less to do with how I feel that given day, but I how feel in relation to how I’ve felt in the past week. So if you ask me today, I’ll probably say that I feel great. Actually, my stomach is pretty unsettled. Maybe a 4 out of 10. I have a headache I can’t quite shake. My bones are a little achy. I had to take a short nap earlier. However, compared to the past few weeks? I’m fantastic! I was able to go into school today for a really satisfying, thought-provoking, and validating supervision session. I’m still fresh from the memories of spending several hours with some of my oldest friends/favorite people yesterday. I wasn’t in bed all day. I’m in no danger of throwing up. I haven’t had to take any medication, and I have been able to eat normal food for the past few days. So all in all, I’m great. I’m acutely aware, though, that had I felt this way six months ago, I would’ve said I feel like crap. It’s amazing how powerful comparison can be in our perception of how we feel.

The trick to enjoying these moments of improvement, though, are not spending too much thought on how transient they are. Tomorrow, I have my third round of chemotherapy. Which likely means that for the rest of this week, I will be feeling pretty poorly, by any account. But especially in comparison to how I feel today. My anxiety about the rest of the week constantly threatens to rob me of the joy of today. So my constant battle is to remember that if someone were to give me a measure of how I feel in say, two days, that measure is dumb. It only gives information as to how I feel that day. Not how long the feeling will last, or how dramatically I might improve within a week. The trick is to not get caught up in any one day of how I feel, but to let myself experience each day for what it brings, and remember that no matter what, it will change.

Before, During, After

Well, the day has come. The rite of passage, quintessential cancer patient day when I lost my hair. Ok, technically I took my hair, or more accurately, Miko took it, because of my aversion to loose hair that isn’t attached to a head, but it was imminent. Every tug at my hair took at least 10 strands, and I didn’t want to see the clumps. That’s just gross. So Brian said, “Well, do you want to wait for it to come, or do you want to take charge and do it today?” So Miko shaved my head.

I was a little emotional about it. I had butterflies in my stomach all day about it, which kinda surprised me. I mean, I don’t really consider myself a very vain person, but this was my one thing. I loved my hair. Which isn’t to say I always loved the way it looked, but that’s just operator error. Or laziness. I did love the way it could look. Like when my hairdresser does it. Or other people with patience and talent. And, most of all, I loved the color. It was different, and made me feel unique.

Yes, I’m aware I’m using the past tense. Because enough people know someone whose hair grew back differently. Maybe curly (yes, please!) or darker, or just a whole different color. Or, as my sister likes to say, a little too gleefully if I may say, gray and fuzzy. And sure, these are fixable things, especially the gray. Well, they are fixable for normal people. But I’m not a takes-a lot-of-time-on-her-appearance type of gal. I’m more of an often-forgets-to-check-herself-in-the-mirror type of gal. I can’t tell you how many times I’ve sat in a morning (okay, or afternoon) class and thought, “Did I even check my appearance today? Huh.” And when I let my hair go too long without a trim, I do this ridiculous and irrational thing in which I refuse to do anything to it. Kind of as a punishment. For my hair. Only, you know, my hair doesn’t super care what I do. So it never seems to change its behavior. Weird. So all of this is a way of saying, if it grows back gray and fuzzy, chances are, gray and fuzzy are what I’ve got. Bummer.

I’m aware most of you opened this hoping to see the goods. So here you go! From Mop-top to Cancer-chic in thirty short minutes!

photo
This was before. I was due for a haircut, anyway. It was starting to make me mad.

first swipe

Miko’s first swipe. I got a little emotional. Also, the sound of the clippers was really too much.

flock of seagulls

Approaching a Flock of Seagulls-ish look here…

scared look

I wasn’t sad here, just trying to fool Miko that I was having a change of heart. She didn’t bat an eye.

finished product

Okay, here’s what I look like bald! I have to say that this picture is a little misleading… in person my head is significantly more lumpy. That’s not just my perception. I say it’s the brains.

Round One

This is what chemo has felt like so far:

Day of 1st Chemo (I’ll call it Day 1): Mouth feels weird by the end of the treatment, can already feel the metallic taste in my mouth people talk about. I get nauseous fairly soon, but have an arsenal of drugs to deal with that. By the end of the evening, an episode of Friends is far too much for me to keep track of, and I just want to sleep.

Day 2: Between naps induced by nausea meds (which make me sleepy), I actually feel pretty good. I start plans to create an app to track everything. This will be comprehensive! It will help so many people! I will track which drugs I’m getting at which doses, what my nutritional intake is, how much I’m sleeping, how much I’m exercising, what symptoms I’m having, whatever else I’m doing for self-care, etc. This will enable me to graph my progress, and estimate what makes me feel better, and when to expect to feel worse. Why doesn’t this exist already?

Part 2 of Day 2: I’m tired. The app can wait.

Day 3: I’m not even actually sure what an app is right now. I certainly couldn’t make one. I just want to sleep. Taking Miko to her therapy appointment is the big activity of my day, and it wipes me out. Who needs graphs to map my progress, anyway? I feel like crap. Graph that.

Day 4: Feel a little better, but could sleep all day. I drag myself to the very end of Miko’s end of the year performance and try to act like I can engage in civilized discussions with others, but actually I’m just tired and emotional. And I just want my brain back, since it seems to have taken a vacation.

Day 5: Sort of like Day 4. Maybe a little less nausea. Maybe a little less tired. Still no brain function, still lots of emotion.

I’m hoping this day marks an upward swing, and I’m over the worst of this round. Because while it hasn’t been untolerable by any means, people say the effects are cumulative. Meaning, next time could be worse, and I could really use a reprieve before that happens.

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.