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.
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.
I am now without a doubt that my eyebrows are thinning, as are my eyelashes. The kid asked me a couple of nights ago if I had any eyebrows. We were having a bed time story, and she was sitting just to my right, so saw me in profile. I said yes, I still had my eyebrows, and looked at her so she could see them. After she was reassured, we continued with story time, and then I tucked her in for the night. I went to the mirror to reassure myself that night, and a couple of times a day since then. They are growing thin. I’m wondering if I should shave them off, or leave them be. Believe it or not, you can buy yourself a pair of stick on eyebrows – and I have. They are sitting right now with my false eyelashes. Honestly, I don’t know why I buy this stuff. I never got the hang of false eyelashes before, and most days of the week I don’t even bother with the makeup that I bought so boldly back in February. And when I do wear it, I’m as conservative as I always was, despite swearing that I would wear BOLD colors every day, to go with my BOLD ginormous earrings, which are still sitting in the jewelry box. Silly. I should have known I’d be too chicken to pull that off…
Of course, I think it would be hard to pull off bold eye makeup under no eyebrows, or maybe I’m making that up because I am a chicken.
Some of you already know that I gave in to the inevitable and shaved what was left of my hair about 10 days ago. It was a relief, as I was starting to look like Gollum from The Lord of the Rings. It’s true what you hear – a bald head feels a lot colder than a head covered by hair. It’s been warm here lately, so I was grateful for no hair, at least while the kid was at school. I could go around the house without my little cap, and it was refreshingly cool. In fact, I wondered how I would have survived our heat wave if I had hair. A few days ago, the kid caught me without it. She’d gone to bed, and I thought she was asleep. She asked me something, and we were chatting for a minute, when she asked me “Mom, are you wearing your hat?” I’d completely forgotten I’d taken the hat off. I tried frantically to cover my head, when she said “You know, it’s not so bad. You have kind of a cute head.” She is still worried about letting her friends at school see it, but apparently not concerned with telling our favorite checker at Safeway “My mom had her head shaved.” I didn’t mind. It’s common for us to share life events with this particular checker, and she with us.
I had my head shaved about two weeks ago, at Shine, SCCA’s volunteer staffed services shop. It wasn’t a smooth bald head like I expected, but I’ve since learned that an electric razor doesn’t give you a smooth, close shave. I had sort of an uber crew cut, which left a nice stubble poking through my scarf like Beatrix Potter’s Mrs. Tiggy Winkle.
So when we talked about chemotherapy with the medical oncologist, we talked about losing the hair on my head, and on a different timeline, possibly my eyelashes and eyebrows. I thought, hey, maybe leg and armpit hair, too! No shaving! But no such luck. I was seriously bummed about this, as I’m not allowed to use a regular razor. Because they had to remove a pad of lymph nodes, I’m at risk for lymphedema. And I haven’t shaved since two days before the surgery. You are advised that to cut down on infection, you should refrain from shaving any where on your body for 48 hours prior to the surgery. Well, I cheated a little, and shaved everywhere but the affected arm. While it’s not as thick as I feared, I was still dismayed about the length and curliness of what is there.
Here’s a funny thing, though. The underarm I did shave doesn’t appear to have any hair growing back. And my legs? There is still some hair, but it’s not growing back quickly at all. I noticed it is very light colored, and not at all heavy. I still buzzed it off with the little $10 shaver Ken got for me (thanks, babe!), and I was able to rid myself of that pesky underarm stuff. Whew! You have no idea what a relief that was. He’s so good to me.
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!
My hair continues to fall, in a consistent, all-over shed. Some of it falls down my neck, so it’s like having just had a hair cut. No matter how well my hair dresser covers me up, I still get a few snips down the back of my neck. It was making me crazy, so I broke down and wore the cotton cap I received from the Patient and Family Center at SCCA. I was planning to take it back, since I found two hats on line that were cuter, and thought I don’t need the freebee. But it has turned out to be useful. Not only does it catch the hairs from falling down my neck, it covers my head when I feel a little self conscious, such as last night after my shower. Every time I ran my hands over my hair to help rinse out the shampoo, the conditioner, my palms were full of hair. Yikes, I’m so glad Ken bought a drain trap for the tub and shower. Looked like a drowned Tribble.
The mirror was too steamy to see the damage right away, so I got dressed and cried a little about what was happening to me. Cried a lot more with Ken, trying to figure out what it means to me. Everyone says it’s just hair, it’s just a short phase, it will grow back. I know all this. Ken wants to know what I want. I say I want to live, I don’t want this to come back. Ken says my hair lost means we are doing what we have to do to kick this things butt. I know this too. But I don’t like change, especially when it is change I did not choose.
Funny thing about change, though. If I chose it or not, I’m always, ALWAYS better off for the change. That will be true this time, as well. I may not see all of the wonder right away, but I know it’s there.
Later last night, when the bathroom mirror cleared, I took a look at my hair. Definitely thinning, no real bald patches. I know that is coming, though, and we are prepared. I’m not going to be one of those patients who doesn’t lose any hair, but I’ll take it. I’m lucky. I’m halfway into this, and as long as I don’t eat too much when I do feel good, and remember to stay well hydrated and eat small meals when I don’t feel that good, stay ahead of the nausea with my anti nausea medications, I’m pretty functional. Until I overdo the activity and get tired. But getting tired is a good thing, too. I get tired when I do too much, I’m not so fatigued I can’t get out of bed.
The nausea is manageable, the fatigue is manageable, and the hair? We got that covered, too. I just gave myself the giggles there. Hair. We got that covered – in more ways than one!
Ugh, I’m so tired. My hands and feet sort of ache, which I think it caused by one of the anti nausea drugs.
The first time we did this, I was so relieved and euphoric that I immediately went out and had a beer, and a huge meal. By 8pm, I was miserable. I took it easy this time. No idea where I’ll land or when the IV anti nausea meds will wear off. I’m not too worried, I kind of know what to expect. And I have a battalion of anti nausea medications to attack the roller coaster of nausea ride.
Oh, and I agreed to do a clinical study on fatigue. No extra appointments, it’s all surveys I complete on line.
I’ll write more later. Think I’ll take a nap right now.