For those of you keeping track, today was my infusion #7 of Paclitaxel, out of 12 total.
Chemo infusion #11 overall, of a total of 16 prescribed, if you count the dose-dense A/C, which Ken does count.
Looking at it from Ken’s perspective, in truth we are beginning our decent off the top of THIS mountain.
This plus the additional good news of my friend Anne, who got a clean bill of health from her surgeon, and NO metastases, means that today has been a GREAT day. Halleluiah!
So I can’t stand door-to-door sales types, like most of you. I never know what to say to get them off my porch, without feeling like a bitch for being honest when I say “I am not interested.” Whatever feeble reason I give, it’s never good enough, and I find myself in a battle of excuses and counter-attacks, until I am weary and confirmed as the wimp that I know I am.
Well, today was a little different. I’m sitting at home, worn out from traveling and chemo, trying to relax and enjoy Phillippa Gregory’s “The Lady of the Rivers”, when some poopedy-poop head starts leaning on my doorbell, and then pounding on the door, apparently because I am not moving fast enough. (It’s a long rambler, okay?) I’m not wearing a head covering, cause even though it’s only 76 degrees outside, for a woman in the middle of chemo-induced menopause, it’s a freaking heat wave. I’m ALWAYS too hot. Except when I’m too cold, when I’m also freaking irritable. The cold lasts about 37 seconds, the irritable lasts all day.
Anyway, there I am, all Amazon warrior princess, bald-headed and cranky. I get to the door, and open it to a FIOS representative with his little clipboard and badge. Shit. Not even the UPS guy with a package for me. Packages I cheer up for, and can even manage a smile. But no, it’s a FIOS salesmen. They are here about every three months, no matter if I already have FIOS or not (we don’t). For this I hate them. “Hi!” he says, way too cheerfully. “Yeah?” I say, my tone implying what the hell do you want NOW. “I’m from FIOS,” he chirps, again, way too cheerfully. I pause, taking in his badge, his clipboard, his anxious face. “I don’t want any,” I say, tersely. “Okay!” he says, apparently very happy to be released, and no argument or cajoling to keep the sale. Wow, that was easy.
Either his sales quota is in good shape, and he doesn’t really need ME, or it’s just not worth pursuing if it means he has to deal with ME, the one-breasted, bald-headed crank of Lynnwood. Either way, I’m laughing my butt off, as to me, this is the funniest thing EVER.
Bald is power. I may keep it this way.
So, so last night. Thursday was taxol infusion #6. Nurse calls it “the top of the mountain” and in a way it is, so, yay! Though I must recognize that each infusion only intensifies the effects. Even as we celebrate being halfway through taxol, in reality things could become more difficult the closer we get to the end. The possibilities include more fatigue, more neuropathy, more nail pain. But we gotta keep on truckin’.
So, so tired today…
Taking ibuprofen, but that doesn’t really help with the neuropathy. My feet are numb and tingling all over, not just the bottoms of my feet, but now the tops as well.
So yesterday, Friday, was for me a super terrific day. 24 hours post infusion #4, and I had no pain in my hands, no numbness in my feet, no all-over body aches or cramping, so I got a little cocky. I took out the recycling, did some laundry, and the topper, scrubbed the kitchen floor. Well, today we are starting off with two Aleve before breakfast. My hands and feet are numb, my joints ache, and while so far I don’t feel my usual all over fatigue, I can sense it coming, as all across the top of my shoulder blades we have the beginning of a deep-down muscle ache. And no, I don’t think it’s all from scrubbing the darn kitchen floor. Although the ache in my right bicep may be from that. I think I’m getting too old for this crap…
It seems like my hair is not only growing, but the fuzz on my head is actually getting a little thicker. I am happy to report that it’s not ALL white, either, as I had feared. Years ago my bestie asked me “What color is your natural hair color, by the way?” I didn’t know then, and I don’t know now, but I feared the worst. I’d been coloring/covering it so long, and in between visits to the salon, I just didn’t look too closely in the mirror to assess the drastic demarcation of the grow out. My sister likes to point it out, in her special, loving way. :) But I just laugh that off. Ken says if it comes in all white, it would probably be because of the chemo, but I believe that’s just him being a loyal, loving husband, flattering my vanity. But if I’m really honest with myself, what I was most afraid of about losing my hair, was how much I would be confronted with the truth when it began to grow back. As long as I could color my hair, I could be in denial about getting older. I still think of myself how I looked when I was in my 20′s. I still feel as ignorant and unsure of myself as I did when I was in my 20′s, why shouldn’t I look like I’m in my 20′s? Well, stupid, (this is me talking to myself), have you looked at yourself in the mirror? No, not a really GOOD look, because every time I do that I see my mother’s nose and jowly cheeks and chin. Yikes!
I haven’t thought of myself as vain before this experience, but I actually am. You all figured THAT out by all my moaning about losing my hair. It took this cancer journey to open my eyes to it. I thought - I don’t really care about clothes, hair, makeup, looking good, so I can’t be vain. I am not pretty to begin with, so why bother? This whole experience with my hair has taught me better. First I worried about losing it. Then I worried about what people would think, so I wanted to hide my bald head from everyone, including my husband (that didn’t last long). Now I brag about being out in public, and forgetting about my bald head. Turns out all these things just point to the fact that I am extremely lazy. Thinking carefully about my clothes takes effort. I want to look as chic and put together as those ladies on What Not To Wear, I don’t actually want to do the work to shop and think about what looks good on me. That would require actually going to the mall, going into a store, picking out clothes, and trying them on. I have to get undressed for that, and see myself in those extremely large, revealing mirrors under those unforgiving florescent lights. Uck, no thanks. I’ll just keep wasting money buying clothes on line, and being disappointed when they don’t work out. See? Lazy. Same thing applies to my whining and complaining about my hair, or lack thereof. Similar lack of initiative, lack of creativity, similar rationalizations for the lack of creativity and initiative. I don’t know how, so why bother? And you all know it’s all BS on my part, isn’t it?
Anyway, back to hair.
After we checked in at infusion, while we were waiting for our turn, I mentioned to Ken my recent impressions about my hair, i.e., doesn’t it seem to be getting thicker? He agreed, especially in the back, which I hadn’t noticed, I was so obsessed with how thick and dark my scalp fuzz was growing. We wondered aloud to each other when it would start falling out again. Then my infusion pager went off (it’s just like one of those little square bricks they give you at restaurants to let you know your table is ready), and we went back to the infusion bay to settle in. The nursing assistant comes to take my vitals, and then we wait for the nurse, which I am thrilled to see is Kevin. Kevin is the oncology nurse I’ve had every week since I started taxol. Kevin is AWESOME. He tells me just enough about what we’re doing, and in such a way that it’s interesting and easy for me to understand. Plus he’s HILARIOUS. Anyway, we’re chatting about how the last week has gone, and I bring up the subject of my hair (see how vain I am? I keep calling attention to it!). I ask him “What do you think about all this hair? Isn’t it getting thick?” He agrees, and I wonder aloud again when I might notice it falling out again. Kevin says it might just keep growing, but really, really slowly. This is an option I hadn’t allowed myself to admit out loud, but I have to say now this has been a secret hope of mine. I don’t think he was just flattering my vanity, and I know we have a long way to go yet, but I can’t help it. I DO hope that my hair will continue to grow, oh, so slowly. As much as I’ve been enjoying my bald chickness (never thought I’d say that), it’s fun to run my hands over my scalp and feel downy soft hair up there instead of prickles.
My eyebrows as well seem to have new growth. They’re still very thin and sparse, but there are also some very short, dark brow hairs coming in. While I was getting ready, I tried again drawing them in, and it went a lot better than the last time I wrote about them. Because of the new growth, it was a matter of filling in some areas with the pencil, rather than trying to replicate a full eyebrow with the same. Much less obviously clown-like, at least to me anyway.
It hasn’t been obvious to me that my eyelashes are coming back. I guess I have to admit that they are, but they just aren’t as long as they used to be. My eyelashes are another vanity of mine. I have always enjoyed very long lashes. They aren’t dark, but they are long, which is noticeable if I wear mascara, as they brush up against the lenses of my glasses, making little “skid marks” whenever I blink. Oh, please, please, PLEASE come back long…
I bought a pair of false eyelashes, tried to apply those today. But those ARE too long to wear with glasses. I thought about giving up after the first two attempts, especially when I got a look at myself with the full set. I thought, “I can’t carry this off, who am I kidding?” But I really wanted to wear my big dramatic earrings, and to my mind that means a full eye makeup, including lashes, of which I have not much, so I had to carry on. So I tried trimming off individual sets of lashes, clusters of five or so, and used just one or two clumps on the outer corner of each eye. That I could work with. I had lashes I wasn’t embarrassed to go out of the house with (yes, I know, it’s ridiculous that I think about these things), which enabled me to wear my bad-ass earrings to go with my bad-ass bald chick head. It worked for me.
The weather here has been so hot, I find that often I can’t bear to wear any kind of head covering when I go out. Out to get the mail, out to take the trash to the curb, and even out to the store.
Sometimes I forget I don’t have any hair.
The response I get from other human beings when I greet them with my big, bald head varies. The ladies and gentleman at Starbuck’s, no matter what city, who graciously minister to coffee addicts around the globe, have been unfailingly kind, cheerful, and lovely. From Seattle to Chehalis, they greet me as if a bald-headed woman is the most normal, charming creature in the world. For this, I love you all. You made a newly bald woman much less self conscious. The FedEx man is a little surprised when I open the door, but barely hesitates as he asks for my signature before handing me my packages. Lunching with friends recently in downtown Seattle, no one bats an eye – extremes in hair style are seen practically every day, so what’s the big deal? And of course, bald heads are always in fashion at the Port Draw Lab at Seattle Cancer Care. I’m only one of the many cool kids at SCCA.
Tuesday I was caught by surprise. As I was leaving the grocery store with my husband and child, I was accosted by a man collecting signatures. After I refused to stop and sign his petition, or whatever, he chases me down. He says to me, in reference to my baldness, how he understands what I’m going through, cause his mom died (presumably of cancer), and I need to look up some natural oil, that he claims is a “cure for cancer.” Now, I’m used to the people I know offering their advice and support. I’ve been frank with them about what I’m dealing with, and I welcome their recommendations and suggestions, as they all have a personal experience with me, and most have experience with cancer. But here is a complete stranger offering me his comfort and compassion. Yes, I could simply thank him politely and go about my business. Which I honestly tried to do, but he kept chasing me to tell me about his wonderful cure. I have never been comfortable with confrontation, even if I am within my rights such as in this instance to tell him to back off. He’s practically stalking me, and I’m getting a little pissed off. I’ve been polite, and told him I’m not interested, but he’s insisting on “helping” me.
Now, I’m completely pathetic at asserting myself, enforcing boundaries. I don’t like to hurt people’s feelings. So it wouldn’t have been natural to me to quip “What are you talking about? I cut my hair like this on purpose!”
My bald head is none of his f-ing business. And I really didn’t appreciate being compared to his dead mother, because, you know, SHE DIED.
The more I thought about the encounter, the madder I got. I would have liked to tell him, as politely as possible “You don’t know me, so don’t try to tell me that you understand what I’m going through, because you really, REALLY don’t. There are things in my life that, believe it or not, are uglier than the obvious. I’m not also interested in your naturopathic cancer cure. I’m being treated at what might possibly be considered one of the best, if not THE best facility on the west coast, and possibly even the Nation. The professionals at Seattle Cancer Care Alliance haven’t included your quack cure in my regimen; I’m certainly not going to follow your advice over their proven expertise. And obviously, your shit didn’t work, cause your mom is DEAD.” As gratifying as it might have been in the moment, that kind of thing would have made me feel even worse later on. The guy meant well, though he was seriously trespassing on me, and my family. I had my kid with me, for Pete’s sake! This was not the time or place to being talking to me, a complete STRANGER, about your poor dead mother.
I used to go out with a man who often lamented my lack of sass and brass. “Why can’t you be more like your sister?” he’d complain. But I’m not like that, and yesterday’s incident convinced me that I never will be. I didn’t like the man in front of the grocery store hounding me, and I didn’t appreciate his well-meant butting in. But I also don’t want to be the one shutting down one human beings compassion for another, however ill placed it is. Yesterday, while I would have liked to leave a greater impression on him than my obvious intention to simply to get away from him as quickly as I could (and that must have been hurtful enough), all I could think of is “I’ve got frozen food to get home as soon as possible, I have my child with me, and I don’t have time for this, please, sir, just stop talking to me and go away.”
So if ever you encounter someone like me, a bald-headed stranger, or anyone obviously dealing with things beyond normal life (what’s normal, anyway?) and you try to express your compassion for them as they walk away, try not to be offended by what seems like a snub. They know you mean well. It just may be that your concern for them is one drop in the bucket more than they can handle at that moment. Let them pass, but don’t give up on people, and never give up on your compassion for your fellow man, woman, or child. We’re all of us dealing with some kind of bat guano.
My love and best wishes to you in your own fight.
Not quite 24 hours post taxol infusion, my first one, and so far I’ve had some aching feet, aching joints, and some sore muscles. I was darn tuckered out last night, but I think that may have been due to the Benedryl they gave me prior to the taxol.
Today trying to catch up on laundry, and trying to get past my procrastination about scheduling time with the physical therapist, and also the plastic surgeon. I know it’s all for my benefit, but I’m not looking forward to another surgery. I’m such a big cry baby…
Well, I’ve had a nice break from chemotherapy, and I’ve enjoyed it.
But now it’s time to get back in to the chemotherapy rodeo, this time with taxol. I’ve got twelve weeks ahead of me, including all of the attendant steroids (to protect against allergic reaction), laxatives and stool softeners (in case of constipation), and nutritional support (mega B6 and glutamine, to protect against neuropathy – oh, boy!).
I’m hoping I won’t need the anti nausea, then again, maybe I’d rather be worried about that than the neuropathy…ick.
It’s been a while since I’ve written. Been getting on with life and our new normal. The moments, hours, or days when I don’t feel like poop, I’m trying to catch up on dishes and vacuuming, taking out the trash and recycling, or more importantly, catching up on my PD James reading, and my knitting projects.
My final infusion of the Adriamycin/cytoxan dose dense cocktail is Thursday. I’m looking forward to it, in that I will have it behind me. Not looking forward to the funky feeling that follows for the week after the infusion. We meet with the doctor before the infusion to learn how the next round of chemotherapy will go. Nausea and funkiness aside, I really do tolerate this dose dense chemotherapy pretty well. Each time is a little different. Seemed like I was nauseated the full two weeks between infusions. This time was about 10 days, as yesterday was pretty good, and so far today is going well, from a nausea standpoint. Having a little swelling of the ankles and feet, but the nurse I spoke to at SCCA said it was normal, and she wasn’t overly concerned based on looking at my labs done on my last blood draw. Suggested I mention it to the doctor on Thursday, and gave me advice on some exercises to do to help move the fluid out of my feet. Don’t you just LOVE medical professionals, particularly nurses? It was a Sunday, and while most folks are relaxing or catching up on projects at home, she’s taking a shift on the triage line, dedicated to her patients health and well-being, and setting my mind at ease. You’re the best, Pam!