grumpy with a side of bitter

So. I'm done with chemotherapy. Chemotherapy isn't quite done with me; my acupuncturist tells me it could be a year before all the effects dissipate. I'm giving it until my hair grows back, then I'm considering that chapter over. The drugs' job accomplished, everything back to normal. Wouldn't that be grand?

Many people feel a kind of despair when their chemotherapy is over, especially those people who don't have another treatment option. There is nothing to do but wait and see and it is easy to see how that can make one feel helpless. I felt differently about chemo all along, never believing, completely, that it would be the cure. Just that it was an important stopgap. So I don't have quite that same feeling. But I do find myself in a strange place. I have more decisions to make about my treatment, and instead of finding that empowering, I'm feeling irritated and fed up with it all. I just want to get on with my life. Without cancer. There's a big part of me that still doesn't feel like this whole cancer ordeal could possibly be real. Despite major surgery, a torso that hardly feels like mine yet, chemotherapy treatments and plenty of writing (and complaining) about it all, I still can't quite believe it. Isn't that true for many of us? Before I got diagnosed with cancer, I thought it couldn't ever happen to me. I was sure I was doing everything right. I would look at cancer patients, even my best friend, and think "yes, but s/he smoked/didn't exercise/ate poorly/fill in the blank and I don't. I won't get cancer." And here I am. And I hate to say it, but you could be here, too. I hope not, fervently and sincerely. For all that my hope is worth. 

I haven't been feeling compelled to write lately, and I've been blaming it on the busy summer schedule. But that is only part of it. I don't want to whine or despair here. But sometimes, it is all that I have. I don't want to do any more research about cancer or try to guess what most likely to make it go away for good. I don't want to worry that every little cough means it is my lungs or every little cramp means it's in my abdomen. I don't want to live with this shadow over me for the rest of my life.  

The post that I meant to write was a good deal different from this. I haven't been keeping anyone except the people I see every day very well posted on how the past couple of months have gone for me. So I was going to do a post of little bits of information. Perhaps there is still time to salvage it? Or maybe not, and I should just have a good night's sleep and hope for a better attitude tomorrow.

medical yawnery & White Blood Cells

I haven’t written much about the chemotherapy experience. I’m sure that, in a way, I have felt that if I ignore it, it will be easier to deal with and will pass more quickly. There are a few too many things that I deal with this way in my life. So in the spirit of making some changes for the better, let me tell you a bit about it.

Along the same lines, I find myself in this small pickle of being keenly aware of how precious each day is, and yet yearning for August 6 to come and go. My last treatment is scheduled for that day, and I will be so glad to have it done. I’d like to assure you that I have been accepting each day as a special treat just for me, but there is no doubt that some days seem more like gifts than others. And not just because of the effects of chemotherapy. I’m guessing I’m not alone in this feeling. Yet another day of rain with cooped up quarreling kids and a headache does not make it easy to enjoy living in the moment. It makes me yearn for a vacation moment, actually.

But we are here to talk chemotherapy. The brief nuts and bolts version is that every other Wednesday Greg and I fly down to Boston via the wonderful pilots of Angelflights (a post on that soon to follow), and stay in deeply discounted hospital affiliated rooms overnight for early morning appointments on Thursday at Dana Farber. We get there and I’m almost always taken very quickly from vitals room to blood draw room to a meeting with my oncologist. The nurses who put in my IV and draw my blood are pros; it is quick and almost completely painless and I’m usually in and out of that room in less than 12 minutes. Since I’ve had past issues with blood draws and IVs, usually involving passing out, this is a very good thing. Then I see my oncologist and we talk about how the treatment went last round. This is my chance to tell her about my minor aches and pains, because really, this is all that I have had so far. Most of my side effects have been so minor that I asked her if that meant the chemotherapy was being less effective. I mean, even my hair, after an initial exodus, seems to be hanging around. Well, sitting around, short and stubbly. Not much hanging going on there. She assured me that it doesn’t have to be a wretched experience in order for it to work.

Don’t get me wrong, I’ve got my share of complaining to do, and Greg and my beloved workmates get more than their share of listening. On one of the first nausea meds (they have me on multiple), I experienced migraine auras. They replaced that one for round two. Most of the nausea meds are given right at the beginning of treatment. Then I take a couple more Friday and Saturday, and I haven’t needed to supplement them after that. I have yet to feel anything that I would describe as nausea.

After seeing my oncologist, we go up a floor and wait for the "infusion." Doesn't that make it sound nice? Like I'm in a good smelling spa or a bar with yummy vodka. They lead me to a big lounge chair and start me on a pile on nausea meds. After the nausea meds come the big drugs. Three injections of Adriamycin into my IV. It is bright red and is the one that can cause possible heart damage down the line in less than 1 percent of patients. That low number doesn’t stop my heart from skipping beats when I think of it every now and then. The second drug is cytoxan, and it is given through a drip into my IV that takes about an hour. That one can cause bladder irritation, but luckily my brain doesn’t seem to register the possibility in order to add its influence. The only discomfort I have ever felt during the actual treatment is at my IV site on my hand, and has been either the chill of the saline or an occasional icy burning when she injects the Adriamycin. If I put a heat pack on early it helps. 

On Friday, at home and at least 24 hours after my treatment, Greg gives me a shot of Neulasta. A shot that costs $4100, by the way. Even my insurance company, notorious for agreeing to pay only, say, $9K for $38K surgeries, is paying $4100 per shot. There isn’t anyone left in this country who thinks the healthcare system is just fine the way it is, is there? So he gives me this shot, which is formulated to boost my white blood cell production so that my body will be ready for the next chemotherapy treatment. Normally treatments are given every 3 weeks apart, but because I had been considering continuing with Taxol (which I think I won’t now) and also because there may be some benefit to having the AC 2 weeks apart instead of 3, here I am. I’ve decided against the Taxol for a number of reasons. Though there have been preliminary studies showing increased effectiveness in reducing recurrence, that increase has been primarily in hormone receptor neutral cancers, which mine is not. And one of Taxol’s potential side effects is numbing of the fingers and toes. It is not common and is usually temporary, but if I were to lose feeling in my fingers, I would be miserable. Most of the activities that bring me the most joy demand manual dexterity, and it doesn’t seem worth the risk at this point.

I spend Friday and Saturday feeling mostly fine; one of the drugs I take both those days is a steroid, so I don’t notice much by way of fatigue. Of course I’ve been taking it pretty easy those days, too, so certainly that helps. By Sunday evening I’m starting to feel a bit drained and Monday and Tuesday are a little long, just feeling vaguely headachy and pretty tired. But then I’m fine again until about a week after the treatment, which is when my blood counts must drop. But the Neulasta has been doing its thing, too, so I’m a little tired from low blood counts and a little sore in my joints from the action of the Neulasta. I limp around and complain a bit the second weekend. By Monday I’m feeling pretty swell again. Ready for another round on Thursday. And the next round will be my last. Let’s hope it’s for good.

On a lighter note, I’ve found one of those albums that I just know will mark this time for me for the rest of my life. And I don’t mean in a bad way. I have so many of those, full albums or just songs, that can transport me back to a night in Jen’s dorm room in 1988, or to waiting tables at the Lompoc in 1994, or to the evening my daughter was born in 2003. It’s really remarkable to me, and can be just as vivid a time trip as odors can take me on. I just got my hands on The White Stripes White Blood Cells. How apropos, right? I chose it before realizing the connection. I’m thinking that the kickass music and lyrics are helping to boost my own white blood cell count. I love it because it can be loud and a little harsh, which is one way that I might describe the chemotherapy treatments, but moves right into some of the sweetest moments. Also a byproduct of the chemotherapy experience for me. “Every breath that is in your lungs is a tiny little gift to me.” That line makes me swoon. And “It might sound silly, for me to think childish things like these, but I’m so sick of acting tough and I’m gonna do what I please.” Yeah, baby.

anyone got a spoonful of sugar?

My oncologist told me to take an anti-anxiety pill before bed last night, but I didn't because they can make me feel so groggy in the morning. But I woke up at 2:45 feeling... anxious. Guess I should have taken the pill.

Greg and I board a plane to Boston in an hour and a half, and I will have my first chemotherapy treatment. I am pretty sure that this is the right thing for me to do, but I'm finding that it is not nearly so neat a decision as the one about surgery. That one was hard, but once I made it, I didn't look back. This chemo thing is a much tougher pill to swallow. (Good thing they're going to give it to me in an IV. Ha ha.) With the surgery, there was no doubt that it had to be done, in anyone's mind. It was just a question of how exactly to go about it. But with the chemotherapy, I'm still not convinced it has to be done. I just think it is best if I do. 

There are so many opinions about what might cure this cancer. But nobody knows for sure, and so I am left to hear all the options and choose the ones that seem best for me. That makes it sound a lot easier than it is. I have encountered so many recommendations, many of them contradictory. Advice about everything from what to eat and how to cook it to what supplements to take--or not take. Ingest 1/3 cup flax seed oil every day, cut daily fat to 20%. Take high doses of antioxidants, no, definitely don't. Cook all your vegetables, vegan and raw is the only way to go. Don't drink icy drinks, have a smoothie with berries and wheatgrass every day. Take chemotherapy, it might be the only thing that will kill any remaining cancer cells. Don't take chemotherapy, it damages too many of your healthy cells. 

I don't want to make these decisions from a fearful place, but the fact is that having cancer is absolutely terrifying. No one is being melodramatic when they call it life threatening. My prognosis is pretty good, but I'm not looking at a 100% cure rate here. 9 out of 10 alive in five years doesn't sound too bad, but I bet that's not what the 10th person would say. I'm trying really hard not to be that 10th person. If I knew what would make this go away forever, I'd do it. Whatever it was, I'd do it. But I don't know, no one does. So I'm working with some best guesses here. Wish me luck.

the rock and the hard place

Last week was almost a normal week for me. Well, still only half days at work, and then there was that HUGE party/benefit that my friends hosted for me. I knew, before the event, how fabulous my community is, how many friends I have here, how much I am loved and how much I love. But this was a physical manifestation of all this that I have known, in one place, at one time, and it was humbling, and inspiring, and empowering. I can't thank you all enough. I simply cannot find the words.

The timing of the event ended up being perfect, because I was feeling healed enough to be there for hours and to get plenty of hugs and do plenty of talking. And because the sun came out for the first time in a week to shine on us. And because I am faced with another difficult decision, and seeing so many of my friends and family in one place, gathered for me, has given me a little more courage and has made me feel a little more rooted. 

I saw an oncologist at Dana Farber to discuss the next step in treatment. I like to believe that the cancer is gone, never to return, but the reality is that it made its way to one lymph node, and that is enough to set us to wondering if it made it farther. There may be some microscopic cells still lurking, waiting for their chance to grow and make my life hell by damaging something more important than my breast. There is no way for us to know if there are stray cells or not, so more treatment is essential. It is the kind of treatment that is still a bit of a question, at least in my mind.

This doctor is recommending 4 courses of Adriamycin/cytoxan (AC) chemotherapy followed by 5 years of an estrogen blocking drug called Tamoxifen. I have known since I was diagnosed that I would probably be taking the Tamoxifen. The side effects are relatively minor and the gains are likely to be high. As my oncologist put it for me, if no more treatment is given, 20-25 women will have a recurrence out of 100 women like me. With Tamoxifen, 10-12 women would have a recurrence. With chemo and Tamoxifen, 8-10 women would see it return. It has been very important for me to think of it this way, rather than that these percentages apply directly to me. It's a somewhat difficult distinction for me to make, to be honest. But it is an important one. 

She is recommending the chemo because I am young and she believes that the possible side effects of the chemo are worth the potential gain. For some women the Tamoxifen will work, for some the chemo will work, for some it takes both. And we don't know which woman I am. But I am having a really hard time deciding if the possibility that I am one of those 2 to 4 women is big enough to make it worth it for me. While I don't relish the thought of losing my hair or being nauseous for a couple of days every three weeks all summer, it is not the short term side effects that make me hesitate. I can't help but wonder what I will be doing to my body over time by allowing these toxic substances in. Of course, the cancer is potentially far more toxic than the chemo drugs. But will it be for me? Can I get the same benefit by changing my diet or lifestyle?

I will go to Sloan-Kettering in New York this week for a second opinion, and also see a Chinese healer in Portland to hear her recommendation. And luckily I seem to be past the reluctance I was feeling to read any more about cancer. I have multiple books and am studying them all. 

I feel like this is all so dull and boring, and I hope you'll forgive me if you have found that to be so. As with the rest of this cancer experience, I'm pretty sick of thinking about it myself. Unfortunately, I have no choice. But you do, so I am grateful for your attention. And any thoughts that you might have. It is still my intention to move this blog beyond All Cancer All the Time, but it's slower going that I thought it would be. I'll be working on appreciating it as another lesson in patience.