Daily writing not
So easy, words, ideas
Can often fail me
Archives for posts with tag: Feelings
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.
With your body, anyway. And hopefully with someone you love, but that’s a different blog!
So anyway, I’ve been pondering this war/survivor/cancer fight stuff a lot. It just feels wrong to me. And then, I was thinking that I was actually looking forward to my chemo yesterday, because it meant I was doing something to treat my disease, and I was getting through it pretty well, and I am 3/4 of the way through. I should finish in mid-July.
I told my oncologist this and he said that so many patients look at just the toxic elements of chemotherapy. And yes, it is a bunch of poison being loaded into your body. But this is how we treat the disease. We don’t know quite enough to single out individual cancer cells and kill them off. Not yet. Maybe someday, as medicine, like everything else, evolves. I remember Dr. McCoy on Star Trek talking about the brutality of 20th century medicine. He’d probably say the same about medicine in the early 21st. Remember how he’d just take that little metal thing and it would buzz, diagnose and treat? You didn’t remove a speck of clothing, either, or mess your hair.It probably rearranged the cells and made them happy again. We cringe when we think about the brutality of 19th century medicine – no handwashing, little anesthetic, no idea of sterile procedure. Medicine has certainly progressed since then. Although people still need to wash their hands. And if you live in the US you have to fight with your insurance to cover your treatments, it sounds a lot like a war. Haven’t had to deal with that in Switzerland yet. Yes, I know I digress. It’s part of my creativity. ;-p.
As I thought about this more, I was thinking of how this perspective (and I’m sure I’m not the first to think about it in this way) differs from a cancer as war perspective. When we think of cancer as war, and fighting, we are at war with our body. Well, the treatments are violent, they do involve the killing of cells. But I like to think of this as loving myself enough to care for myself, and to do what I need to to separate myself from my cancer, or potential cancer. And it’s still killing cells, but it’s more like separating out the potentially harmful cells and getting rid of them. Like trash removal. Or maybe organization where you get rid of what you don’t need. There’s nothing wrong with tossing stuff out. Maybe it’s not necessary to have a metaphor or an image, just think of it as loving yourself enough to take care of things. Although metaphors simplify the thought process – so there is a need to consider how we frame treatment processes and think about developing new metaphors – and maybe someone has already. I’ve not been trolling the literature these days.
I’m thinking about this more, and how it relates to cognitive processes. And there is a definite similarity between this and what the Health At Every Size and size acceptance movements say about body image. More about that too….
For now, though it’s enough to say that loving yourself is better than fighting a war inside your body.
When we think about things, we often use frames to organize, and focus our experiences. Think about how a picture frame focuses the content of what’s inside. Or when we list things based on a valence – such as “positive” or “negative”. Those are examples of what people (mostly in the social sciences) call frames.
I’m taking a comparison of my mother’s breast cancer diagnosis and treatment experience compared to my own, and- highlighting the differences rather than the similarities – using “frames” to some extent.
My mother was diagnosed with breast cancer in 1986. How long she had her particular lump is hard to say – but she never had a mammogram, and by the time she went to the doctor with the lump, the surgeon expessed certainty that it was malignant. It was a cigar-shaped lump in her left breast. After surgery (she had a radical masectomy and lymph node resection), but no metastatic disease as far as we knew. Now I can’t remember if she was even scanned for metastatic disease. As post-menopausal, she was treated with tamoxifen. It was only after she died that I learned she also had 9/19 nodes positive. It should have been no surprise when pain in her hip lead to a diagnosis of bone mets. That was in early 1989. Several courses of chemotherapy and more radiation to various bone areas to ease the pain. For a while, things seemed to be ok, but then in mid-1990, bone mets lead to brain mets, spine compression and my mother died in early 1991 of liver failure.
I was diagnosed in 2010, a smaller tumor, and one that we knew was malignant from the start, but one that looked benign to the radiologist who did the biopsy. I had clear margins, no spread to lymph nodes and no evidence of metastases. I am also post-menopausal, but was recommended for chemotherapy because of the aggressive nature of my tumor. I had a lumpectomy, and I have completed 3/4 of my chemotherapy, I will receive radiation to the lumpectomy site, and I will take a newer generation drug, armidex, rather than tamoxifen.
Some weird things with time. I was diagnosed Dec 21, 2010 with breast cancer, the day we brought my mother home from the hospital to die 20 years earlier. My first trip to the oncologist was the same day my mother died. My diagnosis and treatment decisions have been bracketed by my mother’s death and it’s eerie. I’ve posted about this before. At first, all I could think about was that my story had to be the same as my mother’s with the same ending. Death. And at various times during chemotherapy, especially when I’m tired, I see my mother in myself. Especially in the eyes. However, as time goes on, I see more differences than similarities. The passage of time, differences in diagnoses and prognoses, and individual differences.
With the passage of 20 years comes more information and changes in treatments as a consequence.Twenty years ago, I would not be receiving chemotherapy as a postmenopausal woman without a metastasis. But now, I am, because too many women with node negative status and aggressive (Grade 3) tumors did end up with recurrences and metastasis. There are different ways to receive chemotherapy. Twenty years ago, the idea was to give the strongest dose possible. Now, there are dose dense methods – lower, more frequent infusions increase exposure to the drug, possibly capturing more cells at a vulnerable time. And although this doesn’t apply to me specifically, neoadjuvant therapies – shrinking tumors prior to surgery help to improve prognoses.
As for differences in treatment, I don’t remember now if there were screens in between. I know my mother had mammography yearly on her remaining breast, but I don’t recall other scans prior to finding the metastasis. I had clear margins, no positive nodes and my tumor was perhaps an inch around. I also had no evidence of metastatic disease from bone, lung and liver/abdominal scans. So a far better prognosis from the start. I will also have more frequent scans to follow up on any possible metastatic activity, and my left breast will have mammography every 6 months, my right every 12.
Our diagnoses and prognoses differ, too. I don’t know if my mother and I have the same type of tumor. Maybe so – but I don’t know that the same pathology/histology screening in 1986 was available. My mother’s surgeon described the tumor to me as cigar shaped, and he was sure it was malignant. I can’t remember the dimensions, I want to say about 2-3 inches, so 5-7 cm. The margins were clear, but 9 or 19 lymph nodes were affected. So it was no wonder that 2 1/2 years later, metastases were found. Maybe the mets were there already. My tumor resembled a benign fibroadenoma – in fact when the radiologist did the needle biposy, he assured me it was benign – I could, if I wanted just follow it. I had no problem saying no, biopsy now, for which I am quite thankful. Even my surgeon said that the exterior of the tumor resembled a fibroadenoma, but it was invasive ductal cancer, the most common type of breast cancer.
And I suppose we differ in our approach, and personality. I wish I knew then what I knew now (absent the technical advances) about being in the moment, and not trying to view this all as a war. I wish we knew more about the important of easing anxiety and depression from the outset. But it also has to do with individual differences and autonomy. Each of us has to choose the path we will take, given the information at hand. I’m also a much stronger person at 56 than I was at 36.
Focusing on the differences rather than the similarities doesn’t mean I love my mother any less, nor cherish her memory any less. But it does mean that I look at the experience in a more positive manner, something that should (I hope) help me deal with both the present and the past.
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.
Time Flies Like an Arrow 