Archives for posts with tag: Chemotherapy

It’s nearly three weeks since my last chemo and I’m seeing some changes. The changes – improvements really – are small, and incremental. They are quite noticeable over time and they are very welcome. Chemo is hard, but we get through it. Lots and lots of women and men do. Our bodies do have a great capacity to heal, and even when we feel weak, there is a lot of underlying strength there.

I just feel better. So far I haven’t had much in the way of mood swings. I am starting to sleep better, mostly without the help of meds, and when I do need them, I’ve been able to decrease the dose. I think it’s easier to maintain a positive perspective.. Less reframing, more automatic. I just have to stay away from the news. Too depressing.

Not so hungry. I have felt like eating everything in sight at various times, accompanied by a buzzy, anxious feeling, and this is largely gone.

More stamina. When i leave my house to go to the car or walk Lily, I climb a hill equivalent to about 2 flights of stairs. It has been hard sometimes to make it up that hill. It’s getting easier. And i’m walking Lily a little longer each day.

Not so puffy. My feet have stopped swelling, hands and face look a lot better. My skin is better too… Not so red on my face (taxol/steroid flush), and not so dry on my face, arms and legs.

Neuropathy is minimal. About 75% of people on taxol experience peripheral neuropathy… Tingling and numbness in hands and feet. Mine was never really bad, and it seems to be decreasing.

Hair regrowth is interesting. My hair has been growing since May. I have almost an inch on my head. But it comes in waves and is asymetrical. I wish it was still dark, but it’s not. My left eyebrow is almost all back, but the right isn’t. My left eyelashes are long and curly, the right ones are not so long and more sparse. My hair has always been thicker on the left anyway, but it’s weird to see these differences as it grows back. Other than shaving my head in a snit, when else would i have this experience? Cool.

Yesterday I reached a milestone of sorts. My final chemotherapy. Time for a deep breath.

Over the last 6 months I’ve had 16 infusions – the first 4 were every 3 weeks, and the last twelve were more or less weekly. I’ve been infused with derivatives of antibiotics and yew trees and whatever else, and yet, my body has done quite well. I never doubted that I would finish my treatment, and I never thought of giving up at all. I am surprised and pleased that the treatments weren’t more difficult to tolerate. My most prominent symptoms were tiredness, chemo-brain, mood swings and side effects from the steroids – increased appetite, fluid retention.

Yesterday, at the end of chemo, the nurse removed my PICC line. A part of me since January 21, I watched as she pulled the little sucker out of my arm. Sort of a weird feeling right around my shoulder as the 20 centimeter catheter slid down through my vein, and I was amazed at how tiny (1.5 millimeters in diameter) and stretchy the thing was. And it was purple! I guess that shows up on imaging better. So it’s gone. It was a great device, and I’m glad I had it, but I’m also glad it’s gone. RIP, PICC.

I feel good because I accomplished this, my clinical indicators are positive, and I’ll be followed closely. Every three months by my surgeon/gyn and by my oncologist. Although I’ll see the onc in about 8 weeks to start my Armidex, and rather more frequently at first to see how I do on this particular drug. There are side effects and tolerance issues and we’ll just have to see. But I’m positive that it will all be fine.

So I move on to the next phase…Radiation – more about that as it happens. I do know a couple of things about rads… no underwire bras, and probably no deodorant on the left side while I’m having my rads. Also, no baths or swimming, but showers are ok. Thankfully for everyone. I should be able to take myself to my own appointments… and I’m aiming for a 2pm daily one – reasonable parking, not too much traffic back and forth, and I can have lunch with a friend or something before rads..

But of course, for me, every day, for 7-ish weeks, even if it is 20 minutes…going to be fun!!!

My hair continues to grow, and I’m on the fence about the gray. Back and forth.

So, I reach a treatment transition. Tuesday was my next to last chemotherapy, and yesterday was my initial radio-oncology appointment.

Next week, I’ll have my last chemo and my PICC line will come out. The PICC has done a great job, but I’ll be glad to see it go. I’ve had a bandage on my arm for 6 months. It’s hard to take a shower more than once without replacing the bandage and baths are a pain. Still, I didn’t have to have a port, and my right arm veins are intact. I’m glad to be done with the steroids too. But it’s a little scary to be on my own as it were, no more chemo to protect me. Still I believe the chemo did the job, so I will be fine. Maybe it’s the support of the oncology staff that I will miss, but I will see them again once I start the armidex – my estrogen receptor blocker.

So rads… Every weekday M-F for 36 treatments. The first is Aug 2. I start with 28 and the last 8 are “boosters” so I guess you finish with a bang. Definitely a big whack to any local disease. The rad-onc people seem nice too, my doc was a pretty amusing guy. Next step is “planning” and a CT scan on Aug 25, then “simulation” on Aug 29 and then we start Aug 2.

No tattoos here….they paint guide marks and cover the marks with special tape (tape, bandage, it’s all the same to me). This means no baths or swimming, showers with “neutral” or baby soap, no underwire bras and no deodorant under the left arm for the course of treatment. Maybe baking soda? Keep the left arm down?

During planning, I assume I will get all this info again. The CT scan is to check the position of all my stuff..because my tumor was on the left side, they have to make sure there as little radiation as possible is delivered to my heart. And lungs too. There is a more complicated way to deliver rads with a special machine and breathing techniques if the heart and lungs are at risk, so they just have to see. You have to place your arms over your head, but i guess if you can’t, there is an alternative. I can, so that’s not an issue. Most radiation is delivered to the local site, but then it drops off, and nothing is delivered to the axila (armpit) since I had no positive nodes. For simulation, they make sure you are positioned correctly and maybe that’s when you get your paint and tape. Interesting that they don’t use tats because lots of people here have them, especially women. I hope the tape doesn’t itch. Of course by now, i’m used to wearing tape….what’s a little more.

But the good news is that my surgery site has healed well, the scar looks good and there is no wrinkling, so that makes rads easier. Some of the side effects are swelling, redness like sunburn, pigmentation, changes to the tissues for a while, tiredness. I should be able to take myself to my appointments, at least for the first few weeks. And every Thursday, I check in with the rad-onc doc to discuss problems, etc. I’m sure this will go well, just like the chemo did. So bring on the tape…

Absolutely nothing! (With apologies to the Animals, I think).

Over the weekend I revisited Susan Sontag’s Illness as Metaphor. I meant also to look at AIDS and Its Metaphors, but didn’t get that far. It’s been a long time since I’ve read anything with more substance than a Facebook page. Then I read through the first few chapters of Lakoff and Johnson’s Metaphors we Live By. Didn’t quite get far enough on that one, although the categorization of metaphors is really quite interesting.

I’ve written about this before. I have a problem with the whole War on Cancer/Race for the Cure/Cancer Survivor thing. Military frames play a big part in medicine – we fight disease, we win or lose wars against this, that and the other thing, and we survive. So the assumption is that you can win or lose against cancer (and other diseases). Winning is a cure, and losing is death or maybe recurrence. But also, as Sontag points out, cancer is evil, wicked. The enemy. Those of us with cancer have this evil in our bodies. It must be exorcised, excised, poisoned, removed, stopped. And treatments do this – chemotherapy aims to cease cell division and thus growth. Radiation targets, blasts, shoots.

The problem is in our bodies. Does that mean there is something intrinsically bad about us that has caused this evil to invade our bodies. Invasion, takeover, etc, etc. I don’t like the idea of assessing blame on something which is still a random, probabalistic event.

I want to help my body heal. I don’t want to kill parts of my body, and I don’t want this conflict within. I continue to search for the words that I am comfortable with, but I still can’t find them – war and battle images are too strong. Perhaps for me the answer is to just not think of it. I go to chemo, I have my treatment, and at the end I’ve reduced my risk. Do I need more imagery than simply believing that the treatments will work? Do I have to visualize them? I don’t know the answer.

As it happens, war and disease seem to mirror each other In the 21st century – even in the late 20th, we began to experience conflicts without a clear-cut enemy. Think Vietnam as one of the first. Maybe even earlier wars had this – I am not a student of military history.

After the cold war, we lost our bad guys – no more communists. Who are the guys in the black hats? It’s no longer clear. Just as cancer becomes a chronic disease that is treated multiple times, war becomes a series of engagements, interactions. Blasting the enemy off the face of the earth becomes less effective, so often because the good guys are blasted away too. And this is a metaphor of chemotherapy. Especially with the older anthracyclines and the other stuff like cytoxan (alkalyzing agents? ), “good cells” such as white and red blood cells, mucosal linings in the digestive system and mouth, and hair are killed off during cell division. Chemotherapy as yet does not differentiate between cancer and non cancer cells – it seeks out, finds and stops cell division no matter the sort of cell. It is rather like shooting fish in a barrel. But it’s what we have and thankful for it.

I still don’t like the idea of war in my body. Still, fighting disease is so ingrained into my own language that I am fighting a disease sometimes, and describing myself as “strong” is a good thing. Now, however I view strength as listening to my body, and taking care of it – getting enough rest, eating well, and making sure I call my doctor when I don’t feel well. Not letting myself suffer needlessly. I am giving my body all the resources and strength it needs to fight disease.

Well, this is definitely a work in progress… or a think in progress anyway…. More soon.

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……