cancer – day 108 "The Second Litany of the Side Effects"
Anemia – It’s hard to say if I’ve had this, I’ve definitely had some of the side effects known to be caused by anemia (heart pounding, weakness, dizziness, faintness, and fatigue), but as far as I know my red blood cell counts are still fine in my blood draws or the cancer center would have called me to tell me.
Appetite changes – Such a bummer to suddenly despise foods I know I actually love to eat. The most annoying one has been becoming lactose intolerant, and not being able to tolerate milk or ice cream. It’s not really an appetite change though, so much as some other GI side effect. Tomatoes too, I can’t eat them anymore, they make my stomach cramp. I’ve had funny cravings though. Like, red licorice is suddenly one of my favorite foods, I keep it on my desk and eat it every day.
Being clumsy and losing your balance – I’ve also become very jumpy. For the last week or so anything sudden in movement or high-volume has not just started me, it’s scared me right out of my skin. Tonight Mark was walking back to the offices from the kitchen as I was walking from the offices out to the kitchen and he was just suddenly there in front of me in the doorway. I jumped so bad I slipped on the linoleum and almost fell down. My feet were literally skidding back and forth like in a cartoon, my socks were so slippery on the floor!
Bleeding – This is definitely annoying. Any time I itch I have to try sooooo hard not to scratch. I scratched one of the rash bumps the other day and it bled forever it seemed. And you probably already know I’m not allowed to use knives anymore, since I cut my finger a few days ago.
Bone pain – Oh yeah, this is a bad one, and not something they were expecting me to have with the chemo drugs and other medications I’m on. But girlfriends, let me tell you, this one hits you like a Mack truck, it comes out of nowhere, and is so intense that it’s quickly hits a 9 on the pain scale (see blog sidebar for pain quantifications). The first time it happened was deep in my lower spine. There is no way in Hell this was muscular ache or pain, it was absolutely in my spine and sharp. Unfortunately this was the night of the carmelized onions episode of nausea that sent me to the back yard to recover, but we had one good discovery from that . . . Mark was petting me on my upper back to be supportive when I was feeling so awful, and the warmth felt good so I put his hand over my lower spine and I swear the heat from his hand helped the bone pain. Now I have a heating pad in my office and often use it on my lower back when I’m at the computer.
Changes in taste – A lot of things just taste different. Water in particular tastes unbelievably awful now. I finally figured out during the day 10 blood draw that the nausea doesn’t just put a metallic taste in my mouth, it taste like blood. And so, water, having no flavor or taste, to me now tastes like I’m drinking blood. Nasty.
Changes in smell – Oh yeah, baby, this one sucks too. There were certain things I was already hyper-sensitive to in terms of smell, like cigarettes, but just tonight Mark had to do all the work to make the buffalo burgers and season them before putting them on the grill (usually I do all the indoor stuff, prep the meat and cook vegetables, and he does the outdoor stuff, cooking with the gas grill). The smell of the raw meat in my hands was just too much and I knew it would only get more unbearable if I kept working the raw meat in my hands. I was ok across the room describing to Mark how I do it and he made a great dinner, which was kind of fun to do together actually. Other raw stuff that has bothered my sniffer include Rustry’s spicy jalepeno tortillas and, get ready, this one is strange, I hate the smell of a closed room with an unmade bed in the morning. (Weird, I know, I’ve always noticed this smell, I call it “sleeping people smell,” but now it’s an unbearably strong smell that really disagrees with me, so Mark had to learn to pull the covers back over the bed when he gets up, rather than me going back in to make the bed mid-morning, which had been our usual daily routine pre-chemo.)
Chills – Yep, definitely. But for me it probably hasn’t been that bad, at least, not compared to what I’ve seen in movies. Yes, I get freakishly cold sometimes, so much so that it has a seriously detrimental effect on my mood, but I haven’t been shuddering in cold really (except maybe the day my temperature was 99.6 degrees and we almost went to the emergency room, which is what we have to do if my temp hits 100.5 degrees).
Confusion and memory problems – don’t laugh. Anyone who’s even only followed my blog occasionally knows that I’ve been whining and complaining about this since even before chemo. But it’s also listed as a side effect of one of my chemo meds, and has me to the point where I’m so confused and mixed up memory-wise that I’m afraid to make decisions (at least, any decisions related to my work).
Constipation – Lawsy, Miss Daisy, is this one a doosy! The fun for me was that my first five days after chemo I was completely constipated, then had one day of almost normalcy before going into several days of diarrhea. Apparently with the two chemo drugs I’m on, patients have the joy of having both in the same cycle, as opposed to one or the other.
Dental problems – my gums started bleeding on day two of chemo, so I stopped flossing. I started getting gum bleeding while brushing my teeth a couple days later, but now that I have a super-soft sensitive mouth toothbrush, that hasn’t been as bad. I couldn’t stand it tonight and flossed very carefully after we had corn on the cob with our grilled buffalo burgers, but still got a little bleeding. Sheesh. Other dental problems, well, my jaw gets sore and I think I’m clenching my teeth a lot without realizing it. I catch myself at it sometimes, which is why I suspect it in my jaw soreness. Clenching my teeth, and I get a little scrunch between my eyebrows (back when I had eyebrows, now I guess you’d say it’s in the middle of my brow) from squinting my eyes either because of pain or to because I’m trying to read something in too small of a font.
Depression – I don’t think I’m depressed, but I have definitely seen how to get there. This is something where being with Mark is making a big difference. He tries really hard to stay upbeat and deny stress any effect on him, and he has a wonderfully infectious laugh that I love to hear, so in general being with that kind of person practically every waking minute of practically every day has surely helped me avoid sinking into a depression about how awful all this really is. I couldn’t get through it without him.
Diarrhea – yeah, no fun to find yourself swapping from constipation to this and back, but the nutritionist told us it’s common with my two chemo drugs, so, just one more thing that has to be dealt with each day. I can tell you though, if you’ve ever had a colonoscopy, this diarrhea hasn’t been as bad as what you get when you drink that stuff that cleanses out your system the night before the colonoscopy.
Dizziness – yes, this has happened, and once so severely it was suspiciously like one of my heart episodes (wow, did that freak Mark out, he’s probably most scared of me having a heart failure episode sometime in these three months of chemo when I can’t take my heart medication). I get up more slowly than ever now, and am careful to increase any exertion only gradually.
Dry mouth – I was getting dehydrated the couple days before we really got on the apple juice kick, when water tasted so awful but we didn’t have much else I could drink except a few herbal teas. I read that it’s better for me to stay away from caffeine, so I’m not having tea much anymore, only herbal teas like mint leaf without caffeine. But a week later, starting on the day of my day 10 blood draw, when I thought I was getting enough fluids again, my mouth got so dry I started getting sores on my tongue. More on that below, under “mouth sores.”
Eye changes – This was only mentioned in a list in a chemotherapy booklet from NCI, but has been a bothersome one for me. It didn’t really occur to me at first that it could be another chemo side effect, but after my first chemo treatment I realized that I couldn’t see the small fonts on my laptop screen, or even on the big 20” screen, without squinting my eyes. I’ve had to change the system settings on both to make all the font sizes 125% instead of just 100%, and I’m switching to Firefox instead of Internet Explorer because it has a zoom in feature that I seem to need now. I’ve joked with Mark because it feels like I turned forty in four or five days instead of four or five years. (I’ve heard that a lot of people who never needed glasses needed them almost immediately after turning forty.) The dip my eyesight has taken has made it all but impossible to read street signs, and I haven’t gone to an eye doctor. We’ll see what Lombardi has to say today about this one, but I suspect it’s another problem they’ll expect to go away when chemo is over, so I’ve been hesitant to pay for an eye exam and buy new glasses/contacts when I may only need them for two or three more months.
Early menopause – The more annoying thing I’ve had here so far is the vaginal dryness thing, which I’m not going into any detail on in my journal because it’s just too personal for someone of my “prudish” Midwest upbringing to write about in a blog. But I’ve also had flashes at night, being suddenly woken up with my pillow drenched in sweat. One of my friends in Chicago told me about these little cool packs you can get and keep with you for moments of hot flashes that come up at awkward moments. She said most people don’t really know you’re having a hot flash, it’s just something you have to deal with.
Easy bruising – I was already like this because of my blood pressure medicine, and I don’t think it’s gotten any more severe since chemo, so I’m inclined to think it’s still just a blood pressure medicine side effect rather than a chemo-related one.
Fatigue – Absolutely, every day including now, and a severe episode just last night which was the next-to-last day of my “recovery week” when I was supposed to not really have any side effects and just be recovering my strength for the next chemo infusion (which is today). Fatigue so severe that I can barely move, my eyes glaze over, I struggle to talk, but I still can’t sleep. I lie down to nap and end up watching the fish for 30 minutes because I’m just not sleepy. I’m exhausted physically and mentally, but not sleepy. It’s weird. Last night I sent Mark off to the milonga by himself because I just couldn’t fathom putting forth the energy it takes to go to a dance and be social last night. I stayed home and watched a free movie on hulu instead. It sucked, because dancing tango is without doubt my favorite social activity and to know I could be there but couldn’t was just agonizing. I didn’t want Mark to miss it because of me, but let me tell you, it was really hard to keep a positive demeanor towards him so he wouldn’t feel guilty for leaving me alone to go dance. It was sure to happen sometime in chemo, we know he needs time and space to recover from the stress of being a caregiver (like tonight, he’s been gaming for several hours, World of Warcraft seems like a very addictive game and I’m not too upset that none of my laptops have the graphics capabilities needed to join the game, because I would surely lose countless hours wandering around in the WoW worlds).
Feeling weak or tired – Absolutely, definitely, no doubt. I expected to be tired, I expected to be fatigued, but I didn’t really get what it would mean to feel “weak,” but that’s literally what it is. I’m weaker. I can’t vacuum the house (though I can sweep the kitchen and bathrooms). I can’t do much of anything for long unless my personality gets in the way because I’ve committed to getting something done. I did that to myself last Sunday with the cleaning thing, and every day that I worked this week (Mon.-Wed., well, actually, Thur. too, though I didn’t claim that as a work day).
Fever – I tend to be low, so when my temperature went from 98.4 degrees to 99.6 degrees in a few hours (was that last week? or earlier? I don’t remember, these days I mix up timelines like there’s no tomorrow, I swear) we were getting ready to take a trip to the emergency room, which would have been a real pain because it was Tuesday and Mark was supposed to teach that night. I felt sick for a few days before and the day after that, so I’m inclined to think I had a slight cold or flu, maybe caught at the milonga about three days earlier.
Flu-like symptoms – Speak of the devil. Yes, I had a few days during my first round of chemo where I felt like I was getting the flu – sore throat, headache, fever. It’s possibly a reaction to the drugs, which explains another reason (besides a potential infection) why they told us to go to the emergency room if my temperature goes over 100 degrees.
Fingernail or toenail changes – I’m keeping my nails really, really short so that if they get brittle like I’ve been told they can, that mine won’t get caught on anything and tear off. Uff da, now there’s pain for you, get a fingernail tear into the quick of your finger and tell me how tolerable you think it is. That’s definitely something I am being very careful to avoid by keeping my nails really short. The only other thing that’s weird and possibly a side effect is that my toenails have a kind of yellowness towards the tips. They don’t hurt though.
Hair loss – Yep, absolutely. I should be completely void of fuzz in the next couple days I think. All I have right now is a thin bit of fuzziness of the short hairs we buzzed it to a week ago. It was falling out every time I touched my head, so I started running my hands along my head in the shower and trying to let as many of them as possible stick to my fingers and go down the drain, rather than have them constantly on my pillow, my sweatshirts, my desk and keyboard, or Mark. I hear varying guidelines regarding when the hair grows back (shortest was for re-growth to start 4 weeks after chemo, longest was that re-growth would start three months after chemo and then be spotty so I may need to keep using wigs and shaving my head until I start growing hair all over my head again.
Headache – This was a later one for me, I’ve had a headache for the last three days now and ibuprofen helps but doesn’t stop it. It’s not a migraine though, in the past I’ve had those to the point of not being able to go outside because of the bright light, and this chemo headache is just annoyingly persistent, definitely not a migraine.
Hearing loss – You know, I have wondered about this, but I’d never seen it as a possible side effect until last night when I was getting the lists of side effects from my drug sheets. It’s just harder to make out the differences in the words, it seems like everyone is speaking with poor enunciation and it’s hard to understand what they’re saying. Heaven help when someone talks fast with a accent I don’t know well, I’m lost. It’s frustrating though, to have to ask Mark to repeat himself three times because I just couldn’t make out what he was saying. I didn’t really think of it as a possible side effect, but hey, now that you mention it, maybe that’s what it is.
Irritability – Man oh man, this is no joke. There are certain things that have put me waayyy past the edge business-wise and I’ve let my agitated response sit in my e-mail overnight before NOT sending it in the morning on a re-read. It’s sort of like e-mailing on ambien . . . e-mailing while irritated is just plain not a good idea and should be avoided whenever possible. Other ambien suggestions, btw, include not talking to anyone on the phone (funny story for a later blog), not reading at your kitchen table (a certain someone I know had to go to the hospital because his face lost a battle with a clay flower pot when his chair fell over backwards because he was knocked out on ambien, and it didn’t wake him up!), and lastly, stay off the internet, e-mail, facebook, myspace, and anyplace you might interact with other people. Ambien works really, really well by basically shutting down your brain, and you won’t even remember having the conversation you had with someone after you took an ambien, so, better not to have those kind of conversations, I think.
Itching – oh heck yes, and this is an annoying one because I’m supposed to be being so careful about not getting cuts and scratches. These little rash bumps, and now my almost bald head, itch so bad I’m sure I could scratch them to bleeding with my stubbly little fingernails. We used cortisone on the rash bumps, but I’ve put off trying it all over my head. I have to get some of those head-protector caps they make for wearing under wigs . . . I think wigs are pretty scratchy and surely are causing some of the itchiness on my head.
Mouth sores – I started getting sores on day 10 after my first chemo infusion. These sores started as little white dots that felt like someone unskilled with the art was attempting acupuncture on the tip of my tongue. Ugh. I had two days of liquid diet using straws while I got that situation under control. And the mouth goo I got does numbing, but it doesn’t last very long, and it doesn’t stay on just the spot I put it on in my mouth, nor does it taste good. Maybe we’ll hit Long’s again tomorrow (man is that store making a lot of money off of me these days) and get better mouth sore goo. The nutritionist gave me some mouthwashes and stuff for dry mouth when we met with her last week, so we’ll see if any of that helps during the second round of chemo.
Muscles and joints weak, sore, tired, or achy – The worst of this has been in my knees, neck, and around my shoulder blades, especially my right shoulder and right knee where I have scar tissue from a car wreck years ago. The neck soreness could easily be from sitting at the computer too much early in the week, but that wouldn’t explain it, say, Saturday, when I pretty much stayed away from my laptops.
Nausea – This one has been worse than I anticipated. I expected to feel sick to my stomach and not feel like eating, but I wasn’t prepared for the massive carsickness I developed. Absolutely awful at the beginning of my first chemo cycle then getting the tiniest bit better each day through yesterday, when it wasn’t so constant or intense (but was still there if Mark hit the brakes too quickly or took a fast turn, though he’s generally driving more gently now, I think). Carsickness was never a common thing for me, I did get carsick a few times as a kid, but this has been insanely bad. Just braking the car backing out of the driveway would make me want to throw up. The other insanely bad nausea has been with the smells of certain foods, especially when cooked and stinking up the entirety of this little house. Usually the aroma of a good meal is a very pleasant house smell, but boy oh boy, not anymore. I’ve been able to tolerate some cooked food smells, but even when I like the smell it can be overwhelming and turn my stomach. We don’t seem to have gotten to a good med solution for this, though they gave e like four different nausea meds. I’ve heard there’s one more that we can ask to try, so maybe they’ll prescribe that today, who knows. Or maybe they’ll say it is what it is and the meds I have are the best and only ones they can give me, in which case I’ll just keep suffering through.
Numbness, burning, pain, or tingly feeling – This has been most noticeable in my fingertips. I would think there would be a tingly feeling first, but with me it was just painful. My skin has gotten dry, and my fingertips especially feel very dry to me all the time so I’m constantly putting on lotion. Even so, my fingertips feel scratchy (maybe that’s what they’re calling a tingly feeling), and after a couple days it started to feel like everything I touched with my fingertips was made of asbestos (you know, those slicing glass threads in insulation?) and everything I touched with my fingertips felt like it was making those tiny glass slicings in my fingertips. Ugh, not fun when your work and at least some of your entertainment involves typing. About halfway through week 3 the fingertip pain wasn’t as bad, but now I have these numb spots in my fingertips, and my typing has become even more impossible. My fingers and clumsy and I mistype all the time. Now the finger pain is in the joints, especially the joint closest to my fingertip, and in my thumb. And my hands in general are really sensitive and feel, well, thin-skinned. The little ridges in pill bottle caps kill my hands and after just one attempt the little lines make marks on my hands and my fingers turn red. Pop tops are even worse. My thumbs got the worst of that one, and it was to the point where my thumb tips felt like they were burning and bruised all the time. Now I keep my pill bottles open inside ziplock baggies, but now even those are getting hard to unlock, so I think I’m going to look for some of those plastic baggies with actually zipper locks you just slide. My hands have really bothered me and it’s been a frustrating side effect.
Sensitivity to hot/cold foods – For me there has just been the problem of cooked foods smelling bad to me and making me nauseas. We’ve been pretty careful not to give me anything steaming hot, and I drink refrigerated juices but I don’t use any ice cubes. The only really cold thing I’ve had is fruit popsicles and some sherbet. I don’t think cold has bothered me too much, just the smell thing.
Shaking or trembling – Hm, no shaking, but a tremble in my hands that isn’t constant but is still there. The only time my whole body has shaken or trembled has been when I’m crying, but that’s just what happens when I cry, I don’t think it’s because of my chemo drugs.
Skin rash – Uck, this is not a fun one. I got a rash that was all red and bumpy the first several days, then became more spread out over my torso, a lot on my neck, and some on my face, head, and back. I even found a few down on my legs, these little red and white bumps that itch so irritably it’s nearly impossible to not touch them. We got some cortisone cream to put on the rash spots at night, and gradually they got better, but I still have a lot of little bumps up both sides of my neck. I managed to get rid of most of the ones on my face with some better face scrub and lotion stuff when I got that makeover for my red wig last weekend. The only ones that are still blooming right now, as I’m about to go to my second chemo infusion, are close to my port where I’ve been really afraid to itch because I don’t want to create any possibility for infection near the still-healing surgical scar. A couple of the rash bumps right next to my porta cath scar are still big bumps with white in the center and are really, really red around the edges. Not pretty, not fun. But hey, is anything about any of this either pretty or fun? Actually, I take it back. Getting to play around with completely different lengths and colors of hair has been fun, yesterday we were chatting for maybe half an hour with a friend and her fiancé, and the fiancé (who I don’t think knew I was in chemo) didn’t know I was wearing a wig or that I’d drawn my eyebrows on, he thought I’d just colored it from blonde to dark red/brown. That was pretty neat; to know someone REALLY didn’t realize I was wearing a wig. I like that one!
Stomach pain and cramps or heartburn – OMG, this one was awful too. From the time they started giving me the infusion until almost two weeks later, with varying degrees of pain. At its worst, this GI pain was from the top of my neck to the bottom of my bowls, a constant ache and small piercing burning pains all up and down my middle. The best way I have to describe that pain is to liken it to some film I’ve seen on quantum physics and how our biology of neurons work to learn. The video showed the neurons all separated but with these little flashes going off inside them like a fireworks show, and those little electrical charges between neurons are how we “learn” or develop motor skills (and probably other things that we do by habit over time). So I felt like there were little fireworks exploding in me all the time, sometimes everywhere in my entire middle top to bottom, everywhere there were esophagus or stomach or intestines. Mark said someone else told him it felt like mice were crawling around inside her, but for me the pain was much more piercing and bright than some little prickle from mouse claws. I could almost see this stuff sparking off inside me if I closed my eyes, that’s how intense it was. I think that may be what I’m dreading most about going back for my second infusion today. That, and the bone pain in my spine. Well, and the carsickness and nausea. Well, ok, let’s face it, I’m dreading all of it.
Sun sensitivity – definitely, I burn really easily now and am very, very careful to try to stay out of the sun completely. I also put on sunscreen every morning just in case. I haven’t gotten any bad sunburns yet though, so this hasn’t been too big of a problem for me.
Trouble picking up objects or buttoning your clothes – Big time!!! Between the clumsiness of my fingers and hands, and general weakness, I can’t even open simple juice bottles or pill bottles anymore. I have a top that has a tight row of little buttons down the front and I couldn’t undo them, I ended up pulling it off over my head almost tearing it because I couldn’t undo the buttons to take it off. Now I pretty much wear t-shirts and stretchy stuff all the time, much easier in terms of dressing. Even my dresses for milongas are mostly one piece stretchy things so I don’t have to do a lot of work to get them on.
Urinary burning or pain – This feels the same as a urinary tract infection, and if you know the burning pain of a UTI, I am truly sorry, it’s really awful. And the best thing to do for it is drink a ton of liquids, which of course makes you need to go to the bathroom really frequently, which of course you dread because it’s going to burn but that’s how it is. But it comes and goes, I haven’t found this to be tied to anything in particular, some days it burns, other days it doesn’t. Weird science.
Vomiting – the only times I actually threw up were right before chemo, when I had a reaction to the anesthesia they used during the porta cath surgery. That night, after getting the port put in, I threw up so hard and so bad for such a long time that I felt like I was going to suffocate from not being able to take a breath between surges. But once I had my first chemo and was on the four anti-nausea anti-vomiting medicines, I didn’t throw up again.
Weight gain – Everyone thinks cancer patients are going to lose weight, but the medical reality is that at least half of breast cancer patients actually gain weight during chemo. I’ve been careful to make sure I still got calories even when I was on a liquid diet, but I’ve also been careful, especially in week 3 when I’ve had a much stronger appetite, not to overdo it too much. I haven’t lost a single pound, even with a reduced appetite. Because the reality is that I get absolutely NO actual exercise whatsoever, especially compared to my life just four months ago when I was teaching a lot of dance classes and lessons and practicing for a pro performance with Mark. Now I’m lucky if I go for a six-block walk in a day. So I’m expending zero calories in exercise, and I just don’t need as many calories on a daily basis right now. I know my body is supposed to be burning a lot of calories to fight the chemo drugs and kill the cancer cells, but that’s still a far cry from ho many calories I needed to maintain my weight several months ago. They don’t want me to lose any weight, and they don’t want me to gain any weight. So one of my jobs right now is to manage my weight, and make sure I get more calories if I start to drop, and make sure I back off the higher calorie stuff if I start to go up.
Secondary cancers – it’s almost unbelievable, but in some patients (just a few of course, not many) the cyclophosphamide chemo drug actually causes secondary cancers later. Let’s keep praying THAT doesn’t happen.
So, that’s what’s been happening with me with side effects. It took me three hours last night and two more this morning to write it all up, but I wanted to get that done both for my blog and before we go to see Lombardi today, so I don’t forget to tell him about any side effects that he may feel are important to address. This afternoon we go to start it all over again, my second chemo infusion is today. I’ve been dreading it since I woke up Saturday. But I’ll go, I have to do it no matter how bad all this side effect stuff gets. It would be like letting down my parents and Mark and everyone who’s sending so many good intentions my way, to let the side effects defeat me from completing chemo as scheduled. When it’s really, really bad, when it’s so bad I just don’t care about my body anymore and just want it to be over, when it’s so bad that I don’t think I can try anymore . . .I change my mindset to suffering through it for them, for the people who love me and who more than deserve for me to do everything possible not to abandon them by succumbing to cancer. And when it’s too difficult to bear it for my own health and well-being, I do it for them. And that’s how I got through the firs three weeks. Ugh. Three more treatment cycles. Two and a half months more, then it’s time for radiation treatment. Uff da.