Archives for posts with tag: Treatment side effects

I’ve been moving ahead with life post treatment. Doing a little activism, hanging out in social media, making life decisions, you know – the usual stuff.  My hair continues to grow like a weed, I have more energy, and I’m more active. All in all, pretty good. I feel good.

These past two weeks have been my quarterly medical extravaganza, as I call it. Trips to primary care, my gyn-surgeon, my oncologist for a checkup. The news is all good – Arimidex does not appear to have much of a negative impact – certainly cholesterol, blood pressure, yada yada are all fine – actually quite good.   I have some stiffness in my joints – in particular, my hands are rather stiff and my right hand little finger is recalcitrant. It doesn’t like be part of a fist. Sigh. So much for boxing. More immediate, however, is the fact that I cannot make a fist and pound on the knife to smash garlic. So, I’m learning to use my left hand to smash down the knife.

Even my knee has been improving. Left knee has very little cartilage on the inner joint surface and I am looking at a replacement at some point. But for now, I’ve been doing a lot of physiotherapy, walking, and the knee has felt quite a lot better. I walked a lot over the weekend, and might have overwhelmed it, however.

On Monday I went to the oncologist. Again, everything was fine.  As he said, I am “healthy”.  In cancerspeak, I’m NED (No Evidence of Disease). And I had a Zometa infusion. Zometa is a biophosphonate, which, if I understand this correctly, is an antibody that helps strengthen bones and gives a little added protection for the prevention of bone mets.  Breast cancer, especially hormone positive such as mine can keep on giving years after with distant mets. 

That’s why it’s critical to encourage and support more research into metastatic disease, and to support women and men with metastatic disease. But I’ll write more about that soon.

Treatments like Zometa are used twice yearly in patients who are at risk of bone loss, more often in patients who’ve actually got bone mets.  I guess I still am a patient in this sense.  Oh well. I’ll get it twice a year as long as I’m on Arimidex (the estrogen eliminator) to keep as much bone as I can. And the infusion itself was fine. A little wiggy after the infusion (which contained my favorite steroids), but made it fine home on the train, and fine to sleep. Ok yesterday morning, too.

But at some point yesterday, both knees began to hurt_like_hell.  Hard to get up. Left knee worse than the right. I have meds for pain, and I took a small dose of steroid, so now it seems to be improving. Sucky way to start the day, though.

I have a huge stash of movies, books and endless hours of amusement on the internet. I’m making myself get up every hour at least and walk around the apartment. The more I walk, the better it feels. I am stretching when I’m sitting still. I’m doing as much as I can to make this last as briefly as possible.

The dog is enjoying a sleepy day too… she’s sacked out on one of her 3 beds. Hmmm… I have only one bed. What’s wrong with this picture?

I’m a feedback loop. We all are. When my mood is negative, I don’t take care of myself because I don’t give a crap. And when my body chemistry is off, e.g., low blood counts for example, I have a negative mood and thus am even less attentive to myself. Therefore, it’s a big feedback loop. If I felt like making a drawing with little arrows and boxes right now, I might hop over into one of those programs I have, but my modeling synapses are on medical leave.

This brings me to a trite little saying “Minding the Body to Mend the Mind”. I bet I’m not the first one to think of it, so it’s probably not original, but neither am I here to amaze the room (apologies to Jane Austen).

It’s been a rough few weeks really – after my final anthracycline chemo, anemia (low red counts leave you tired and depressed) and neutropenia (low white counts increase the likelihood of infection) set in. So I had an iron infusion, a white cell stimulating shot and heavy duty antibiotics to counter an an infection. But then the combination of low counts and antibiotics killed off the few happy bugs I had left in my body. And earlier this week, I woke up feeling crappy with a lovely green-yellow tinge to the tongue and it even looked furry. In German, the word for fungus is pilze, the same word used for mushroom. Tongue mushrooms. Yummm. Actually my tongue was the color of a porcini mushroom right before it goes off. Off to the oncologist for an anti-fungal tablet and an anti-fungal rinse. Fungus cleared up quickly and I felt normal. Hard to describe, but I almost expected to feel hair when I shook my head. I felt perky, and I started to get back in touch with a number of people I’m owing emails, phone calls and etc. Coming out of hiding. Haven’t felt like this in months.

So that brings me to the mind-body connection. I suppose that I knew this rationally all along – but it has never been more evident to me in the last few weeks as I experienced some intense depression brought about by lowered blood counts and both fungal and bacterial infections. The lowered blood counts are the primary culprits here, since they make the infections more likely – and as I said above, the antibiotics kill off all the happy digestive bugs making fungus more likely.

I know that when my counts were low, and I had infections, my thinking was unclear and depressed. My head felt foggy. There was a hopelessness hanging over me. This brings me to the hamster wheel, the perfect metaphor for hopelessness. A hamster on the never ending wheel of dismal circumstances. When I feel like this, it’s hard for me (as for many others with family history, no doubt) to disentangle myself with cancer from my mother with cancer. A few days ago I looked in the mirror – my eyes were tired, and my eyebrows were scant. I saw my mother looking back at me. When I feel better, I don’t recognize my mother in my face. Similarities change with mood.

When my infections were resolved, I suddenly felt much, much better. It was so odd. Like jumping off the hamster wheel and moving forward.

Normal is overrated though…..not that I would know the population “normal” if it bit me in the butt, but I have my own unique and cherished normal.

Yesterday I had my second of twelve taxols. The stuff derived from yew trees. Most effective when given in frequent but smaller doses, e.g., weekly. The good news is that it doesn’t seem to diminish blood counts as much, it doesn’t seem to create chemo brain, and I don’t require as much prednisone taper. The downside is that it can create allergic reactions – I believe it’s the suspension medium that people react to most often. So there’s always a little (more) anxiety those first few minutes after the drip starts. Also, neuropathy is a common side effect.

But overall, I’ve tolerated the taxol pretty well so far (2/12 done), and in fact, after my chemo yesterday I walked to M’s office (about 1/4 of a mile), had lunch and coffee, came home and cooked dinner. This morning I got up, walked Lily and went shopping with M, tasks I was not able to do the day after my previous chemo. In fact, I was pretty much stuck in the house (and mostly in bed) for 4-5 days post chemo.

So this makes me happy. I feel more like myself, and my mood is considerably better. Also, I am more active which helps a lot. It does make me hopeful that there will be life after this is over.

Still, I take frequent naps. And it’s time for one now……writing is exhausting.

Next up, perhaps even later today, however, some thoughts about mind-body connections and other navel gazing (not nasal grazing). ;-p

When I started my chemo, I attributed most of my wonky side effects to the prednisone. But in fact, I think the chemo itself had a lot to do with my side effects. With my first chemo (anthracyclines), I had about a week of disorientation, unclear thinking, bad balance and just generally wonky feelings, which I attributed mostly to the prednisone, because most of the side effects dissipated along with the reduction of prednisone. But it could have been the onslaught of fast-growing cell killing – this stuff kills anything that grows fast – blood, hair, muscosal linings and hopefully, cancer cells.

Yesterday, I had my first taxol, with the same dose of prednisone and anti-nausea drugs as before (plus antihistamines). This morning I started on my pred taper at the same dose as my previous chemo. And today I felt a lot less disoriented and a lot more focused. It certainly seems that the anthracyclines (my first chemo) contributed to brain fog, whereas the taxol may not. Now, going forward, the cumulative dose of taxol may create similar side effects, but we’ll have to see. For now, though, it seems a lot more tolerable. Time will tell, however. I was very nervous before my taxol, afraid of an allergic reaction, but I was fine, and glad I had antihistamines just in case. So I’m hoping that will reduce my anticipatory anxiety going forward.

I think the anthracyclines contribute to what people call “chemo brain.” I don’t think I’ve had clear thoughts for the last three months or so. My head feels much clearer now. I might even do more serious writing – that would be nice – for months I’ve had the concentration of a flea. My estimate right now is that I’ll be done with chemo in mid-July (I’m going to have a break or two during this chemo), and then maybe done with rads in early September. Long journey, isn’t it? And so unexpected. But then perhaps that will be all I need.

Today I started my new chemo. Twelve weeks of taxol, derived from some sort of yew plant. Rather than sacrifice yews now though, I think they create taxol through stem cells or something (guess it’s ok if it’s plant stem cells, of course).

Anyway, taxol is one of the most beneficial drugs against metastatic breast and other cancers. Not that I really think I have any metastases. (Note to self, remember the correct spelling of that word). The idea is, however that this will seek out and kill any potential metastases. Like a met-seeking-missile. I’ve really been watching too much NCIS, Criminal Minds, Without a Trace and etc. But it’s still not a war, and I’m not a survivor (read previous posts if you don’t get this).

Back to the chemo… I’ve had a tough week. My cells bottomed out (this is a good thing, I am assured), leaving me susceptible to infection(not a good thing), so we had to deal with that. One of the side effects of low counts is that I’m just tired and with that tiredness comes depression and lethargy. Of course when I’ve just on chemo I have a prednisone head buzz. And the anti-nausea drugs make you constipated. Lots and lots and lots of different side effects, each annoying in their own way. However, each is predictable and relatively short-lived. And there are lots of strategies for minimizing side effects – starting with when you receive chemotherapy itself.

For the taxol, I’m getting what’s called “dose-dense”, and that means that every week I go in for an infusion. Exposure rather than the magnitude of the dose is most important.The major mside effects of taxol are an allergic reaction to the drug itself, and neuropathy (pain in fingers and toes). For the neuropathy I have vitamin b6, and for the allergic reaction, prior to the taxol infusion, I receive an infusion of prednisone, an anti-nausea drug and two different antihistamines. Then the taxol. Today it was fine… we just have to wait and see for each infusion. The prednisone taper is shorter too… just 3 days so far, and I have to take anti-nausea drugs for two days. For twelve weeks, I will go each week for this treatment – I’ve just finished the first, so 11 more to go.

The anithistamines make you sleepy. I feel asleep during the infusion – and made an embarassing snore, waking myself up. Then I came home and went straight to bed this afternoon, forgetting a call I scheduled. But I’m going to bed soon here….

I talked to my oncologist for a while today about how i feel. This was quite helpful. I appreciate that to a fairly large extent, side effects are somewhat predictable and time – limited. I realize that they are not entirely predictable, however, and my oncologist is quite honest about that. He’s also incredibly supportive and confident but not in an arrogant way, and the nurses in the office are all very competent and caring. The idea is generally that one should live as normally as possible, but still take care to avoid tiredness and infection. But I feel like I’m in a good place and receive good care. Still, I have my ups and downs and occasionally when I look in the mirror, I’m not sure who’s looking back at me. A few ghosts to exorcise. There’s still quite a bit of anxiety bubbling forth, too.

Every day, there’s a bit of a struggle between remembering and associating with the past too strongly, fearing the future, and living in the moment. Living in the moment is what I want to do most of the time. Writing helps, so I’m glad I’m now in a writing mood…………

My big hair loss occurred about 2-3 weeks after my first chemo. Hair started to fall out 2 weeks after, and I had my all my hair cut off to about 1-2 cm. Then it proceeded to fall out over the next few weeks. It’s an interesting thing… I suppose like sunburned skin, it’s one of those things you can’t leave alone. You just keep reaching up and pulling out as much hair as you can. Of course, the guy who made my wig told me that I should get as much of my hair out when I showered, etc. I did a pretty good job too, because I didn’t have any weird feelings in my head. Or maybe I just didn’t have those weird feelings.

I became a big fan of sticking tape on my head (mostly wide package tape), and pulling it off to see how much hair would come out. It didn’t hurt at all. I suppose the hair is short enough, or the root-folicle-whatever is fragile enough that it comes right out. Or maybe the tape isn’t that strong. Whatever. It was fun. We must find amusement where we can. There’s not a whole lot amusing or funny about chemotherapy, let’s face it. In this case, I suppose that good intrapersonal skills are useful here – being able to talk to yourself, amuse yourself and appreciate yourself even when you’re cranky, tired and bald.

So here I am three chemo cycles later. My hair looks like it might be coming in again, but today I used the tape test and it looks like it’s falling out too. So are my eyebrows – the middle of each eyebrow is gone. No need for the tape test there. My eyelashes look rather scant as well. No tape test on the eyelashes. That’s just ewwwww!

If you’ve ever seen the Simpsons episode where Homer’s roomate in the asylum claims to be Michael Jackson, but he’s really a large, pale guy with not much hair. I look a lot like that.

But it’s ok to be bald. Earlier this week, I went down to get a package from the mailman without a wig or hat, and I walk around the terrace bald, and I go to the laundry room bald. It’s nice not to have to worry about washing your hair and styling or dying it. Just wash your head. It’s also freaky – it’s the one thing that makes you look undeniably like a person with cancer. And you do have to wear a hat or a wig out in public – it just generates way too much attention otherwise. And when I’m tired and cranky, I don’t want attention. I just want to slip under the radar.

But anyway, I found out today that other people do the tape test too. Makes me feel warm and fuzzy to know that I’m not the only one out there sticking tape to my head in an effort to gauge my hair loss.

This week, I got to wear a mask in the doctor’s office, albeit briefly. Good thing too – masks are not very comfortable.

Haven’t been in much of a mood for writing. Probably my rapidly descending blood counts have something to do with it. Also my sister is visiting and we’ve been doing stuff when I’ve had the energy – so I’ve not had a lot of excess energy for writing.

Last week I went to the oncologist for a check up. My counts were pretty low… I had an iron infusion, but I declined the neulasta shot. Neulasta stimulates your bone marrow to create white blood cells and neutrophils – or maybe just neutrophils, I forget. Neutrophils help our bodies fight disease – one of the big problems with people on chemotherapy is that as the chemo kills off the fast growing cells, with blood cells among the casualties. Without enough blood cells, we become anemic, and susceptible to infection – so people on chemo are often tired and infection magnets. Before stuff like neulasta, you’d end up in the hospital in isolation with IV antibiotics. But neulasta has its downsides. It can cause bone pain. And it’s awfully expensive. It probably has some other side effects as well… I didn’t bother looking them up. For me, low blood counts seem to result in a loss of my inquisitiveness.

So last Tuesday I woke up feeling like crap. Swollen lymph nodes around my neck, tired and seriously cranky. Back to the doctor. Blood counts were even lower, hence the mask – just in case another patient came in sick and we infected each other. An additional blood test showed evidence of infection. So I got some serious antibiotics and I agreed to the neulasta shot – a smaller dose than one usually gets right after chemo (the usual administration).

Went home and had a nap after the shot. About 3 hours into the nap, awoke with a throbbing pain in my lower back and hips. Then the pain moved to all my large bones – legs, breastbone, and of course back. Took some acetaminophen, but it didn’t help completely. Not much sleep that night, but graduated onto alternating acetaminophen and ibuprofen. The pain went away after about 24 hours, and I felt better. I guess I have more energy to some extent. But I’m still dragging…

I’ve not had a child so I can’t compare this to the pain of childbirth. I did have a really severe case of pancreatitis before I had my gall bladder out, and that was pretty bad. This pain was quite bad too… mostly because it was nearly constant, with a throbbing, grabbing element that was less than pleasant. But it’s gone now and I shouldn’t have to have to have neulasta again.

Sometimes I wonder how I will feel when this is all over. I am tired. And tired of being tired. I have done some crochet, a little beading and necklace making, and I’ve watched a lot of TV – mostly old episodes of NCIS. I’ve played some angry birds, too, but I haven’t the brain power for anything requiring much thought. I don’t really enjoy being out for long periods of time because I get tired, and large crowds bother me, because I don’t want their germs. I am fussy, cranky and to some extent, paranoid. I know this changes your life in many ways. I hope some of these changes are only temporary. I’m exactly halfway through my chemo. It takes a long time, it seems. Tired of being tired, too…..

More soon……

When you decide to create a personal blog like this, there’s a lot of redundancy and navel gazing. This is of course preferable to nasal grazing, which is somewhat appalling to consider. But what about navel grazing or nasal gazing? I guess the former is rather, er, kinky and/or requires more flexibility than I possess. The latter would result in crossed eyes, or just too much time spent looking in the mirror. Hard to get a clear view of one’s nose without a mirror. Isn’t language wonderful though?

Interesting to note that because chemotherapy wrecks havoc with your fast growing cells, nose linings are impacted (anything soft like your nose, mouth, stomach, etc). For two weeks – once I go off prednisone until my next treatment, my nose runs like crazy, it’s stuffed up and I sneeze constantly. One of the more benign but annoying side effects.

But i digress… so back to the point I was trying to make.

I don’t like the label “cancer survivor”. Just as I don’t like the “war against cancer” or “war” against any other disease, addiction or condition. The fighting metaphor is really lost on me. I don’t like the idea of fighting my body. Have spent enough time fighting it for other reasons (see posts on body image, if I ever finish them). I want to work with my body, not fight bits of it. I guess there is a lot of violence inherent in cancer treatment – lots of killing cells and so forth. But maybe there’s another way to think of it…. maybe replacement, rejuvenation, renovation. Home Improvement. Cell Improvement.

I haven’t had cancer long enough to be a survivor, and well, if I believe my oncologist and gynecologist, most of it, if not all the cancer is gone. My treatment is more or less prophylactic. Sort of. I suppose there are always micro (nano) mets hiding out somewhere. So what am I surviving? I suppose chemotherapy is something to survive. Radiation might be too. But anyway, I’d prefer to be a Person Who Hopes She Formerly Had Cancer. Has a “performer formerly known as Prince” flavor to it. PHSFHC. Doesn’t quite roll off the tongue though…. needs work.

On Monday I have my last anthracycline infusion. My last bag of red stuff, and all the other stuff that goes with it. My last 6 day taper off prednisone, anti-nausea drugs and movicol. Movicol is a laxative, btw. I keep looking for a picture of a cow on the box though – mooooo-vi-col. Get it? Ah, I’m in a silly mood today.

I’m also tired. Yesterday I was sort of blah. I think when my counts are really low I’m not at my most optimistic. I suspect my counts bottomed out yesterday and will be coming back up over the weekend. By Monday, they should be back up to where they can tolerate the chemo. It’s great to know that we can recover from these things. Back and forth, the see-saw of chemotherapy. Give and take.

My sister comes on Monday too, for 4 weeks. That will be fun. M goes to the US for about a week, so I’m glad for the company. And it’s definitely spring here. We’ve had gorgeous days, cows out in the field, flowers blooming. With spring comes the pungent smell of manure or whatever they put on the fields. That might be the downside. My eyes are sensitive enough these days…. they do water a bit. But it’s worth it to see the cows run across the field to get their dinner. A cow running is really a sight to behold.

I’ll have more to say about the next chemo, but I have to ask some questions about it……. so maybe next week…..

So M has gone to Holland to see his family, and we’ve sent Lily to the kennel because I’m coming off my prednisone taper and it’s just been too difficult for me to get her out 3 times a day when my head is elsewhere.

But I’ve done pretty well with being home alone. And I’ve had friends checking in on me, so it’s not like I’m really alone. I have a comfy bed, crochet to do, TV, and the Internet and plenty of simple stuff to eat. I sleep a lot when I’m coming off my prednisone taper. Prednisone is a fabulous drug in many ways, but the side effects can be quite awful. It creates a stress-like environment in your body, so that your blood sugar rises, you fill with fluid and it impacts all of your muscles. My teeth feel very long, my eyes don’t focus and I just feel fuzzy all over. Add that to the anti nausea drugs, you’re a drooling, constipated mess. I’m sure I’ve written this all before – I fear I begin to be redundant.

But at the end of the taper, things start to feel better, and it really only takes a day or so to feel normal again. But, you have to be a little careful emotionally because of mood swings. The first time I went off prednisone, I had this manic feeling. Rushing around, wanting to eat everything. And then you can tank and feel depressed. You can also be depressed when your counts drop because you’re just tired and lacking energy. So the key here is to simply listen to your body, and don’t expect yourself to do too much at any one time. Nothing is so important that it cannot wait.

I also have strange food cravings. For the last few weeks I’ve wanted to eat asian inspired things – noodles and broccolli in soy and ginger with shrimp, dim sum dumplimgs. Pesto. Garlicky and green, clear flavors for the most part. Wonder if that has something to do with how the chemo impacts my mouth lining. So I’ve been eating shrimp and chicken and salads. Yummy. And dark, dark chocolate. Might as well eat what I want. More about that in another post though…….

This time, i also tried to drink a lot of water before chemo and during my taper. I think it helps a lot with flushing out the crap. The only small annoyance is that I have to get out of bed at 3 AM for a potty break. But that’s ok… just sleep some more after.

And M will be home tonight, Lily will be home tomorrow, and Eileen comes in two weeks for a long visit. In two weeks I have my last big chemo, to be followed by 12 smaller dose ones. So we’re moving forward.

So, I am 3/4 of the way through with the first chemo – anthracyclines.  Which, I learned today are derived from a bacteria of all things! Here’s the link to wikipedia


I’ll have one more of these on March 28 and then starting in April I’ll have 12 doses of taxol, weekly.


Taxol is supposed to be less intense, and I won’t have to have as much prednisone. We hope.

But anyway, my response to the chemo has been good. My blood components drop to appropriate levels and then come right back up. Side effects aren’t horrible. Yes, I am quite bald, and my nose runs all the time.  Otherwise, ok. My stomach is a little wonky, however – to be expected. My new favorite food is oatmeal.  The worst part of it is really the prednisone – but I have to have it to tolerate the chemo.

So anyway, I feel a little buzzed, disoriented, but ok.  Since I had a boatload of prednisone, I’ll have wonky side effects from that – my eyes won’t work properly and my teeth will feel long in my mouth, and overall I’ll feel quite wacky.

For now I feel ok though. I have my activities planned – lots of crocheting – it’s mindless fun, angry birds – more mindless fun, and listening to music, some meditation perhaps and some tv viewing. Also napping and drinking water. Drinking enough seems to be a problem that I have, but i will try to increase that since it will help flush out the pred.

Looks like spring is coming to Switzerland. We have a week of sunny days, which can only help my mood.

Time  to break out the complicated drug regimen for the next 3-4 days. Lots of anti-nausea drugs and the like. But hey, it seems to work.  And my picc line is still intact. Good thing.