Archives for category: Breast Cancer

I’ve been ruminating on this post for a long time… so I thought I’d just get it out there.

It’s simply better to be optimistic than to try manipulate the outcome by magical thinking – if you’re prepared for the worst, it won’t happen. It’s a magical sort of contract. This sort of thinking really has no direct bearing on the outcome. Like carrying an umbrella to ensure it won’t rain. And further, what if preparing for the worst somehow predisposes you to pessimistic thinking and behaviors impacting your outcomes negatively? We don’t know how optimism vs pessimism work for sure …. At the very least, what if preparing for the worst makes you miserable and takes away from your enjoyment of life? That’s more obvious.

Lots of scholars have studied magical thinking and if you’re interested in it, there are lots of resources available (google is your friend here).

After a lot of work, and I mean, a lot of reframing and thinking – and some not so gentle pushing from some people I am really grateful to (Abigail and Marco), I’ve really come to believe that it’s simply better to be optimistic and positive.

Here are two ways that I can think about my own breast cancer. The first is to be optimistic – early detection, diagnosis, rapid treatment, good prognosis, good care. The initial surgery got it, and I am going through chemotherapy to lower the risk of future metastases, and I’ll have radiation to lower the risk of local recurrences. Then I’ll continue with meds to further reduce risk. And then there will be some lifestyle changes. The cancer is gone, and I’m doing everything I can to make sure it stays that way. That’s an optimistic approach, and but it’s also grounded in reality.

The other way to think about it is via magical thinking. I hope for the best, but just in case, I’ll be ready for the worst. I’m prepared for a recurrence, so by being prepared, I’ll hedge my bets and it won’t come back. Preparing for the worst is a mental process, and the implications of that process on behavior aren’t clear. It does mean that overall my thinking is less positive. And really, what’s the point of that? When the cancer never returns, then I’ve wasted all that time preparing for something that doesn’t happen when I could have been having fun. Sort of like washing my car to ensure it will rain or bringing an umbrella so it won’t. Sometimes it rains when you wash your car, but there’s no causal link. Same with bringing the umbrella.

So I leave the umbrella at home when it’s sunny, stop washing the car when I want rain, and don’t think about recurrences. But I know that I have to take care of myself. So I do my follow-ups, visit the doctor as needed. And it’s why I appreciate everyone’s prayers and good thoughts, because that makes it easier to be positive and optimistic – because it means that people want me to do well, too. And well, prayer and good thoughts are positive, optimistic too. Maybe they are magic, but it’s not hedge your bets magic – think in a negative way so that something opposite happens.

I may be back to work on this later….. but for now, I need to post this sucker!

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…

For my chemo infusions, I have a PICC line, which is just a 20 cm, 1.5 mm diameter catheter inserted into a vein in my right arm, taped down by a butterfly bandage. Otherwise, you have to rely on your veins, which are not reliable, or have a port inserted in your upper chest cavity (I didn’t want one).

Vascular surgeons really don’t like these to be in there for more than about 5 months, 6 at the absolute limit, and mine has to last another 4 weeks (I’ll be hitting the 6 month mark). Any foreign body runs the risk of causing infection, and that’s the big risk with this baby.

It’s a little red around the incision site, so I’m on giant antibiotics for the next 10 days. The vein inside looks good tho – my vascular surgeon looked at it via ultra sound…but if I spike a fever, the PICC has to come out and that will be a major pain in the ass for me. I don’t know if I can handle 4 chemos in my crappy veins without the PICC. But I won’t spike a fever… and I will be careful, and it will be fine.

Everyone goes on vacation in July too! Bah. My vascular surgeon will be on vacation when my PICC Line needs to come out, but he said anyone can do it in the oncologist’s office, or one of his colleagues. In fact, he told me I could do it myself, really. Of course it might be a bloody mess, so I guess it’s not something to try at home, kids. So I won’t. But I’ll watch them pull it out, I think.

So… I have my last chemos scheduled and my surgical follow up. Last chemo is July 19 (I have 4 more to go). And my follow up is July1 – just to make sure the location formerly known as my tumor is behaving. Looks good to me, but I can’t see what’s going on inside. Still, you can hardly tell anything is missing. That’s the good part of lumpectomy. The bad part is… well, you have to have radiation there, and you have to figure out if you’re comfortable with keeping your breast or whether you view it as a time bomb. I choose the former.

This does me think about the relationship between breast size and surgical decision, all things being equal. If you have tiny breasts, it’s probably not worth the lumpectomy. If you have large breasts, masectomy may mean reconstruction and heavy prostheses. Being the bennificiary of considerable boobage (that would be the technical term), and with a relatively small tumor that was well defined, lumpectomy made sense to me. And I’m happy with the result.

Apparently lots of breast cancers are in the left breast, upper outer quadrant, which makes lumpectomy convenient (if such a thing is ever convenient) if you want to preserve the breast. The survival rates after masectomy and lumpectomy with rads are the same. Obviously you’re at greater risk for a local recurrence in the same breast (given that it’s still there).

So think good thoughts for my PICC line and my arm, which looks a little less red today. And my stomach, enduring 10 days of enormous antibiotics. Lots of yogurt, too.

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.

One of the reasons that I like living in Switzerland is that health care is coordinated and well organized – at least in my experience. I awoke this morning feeling a little icky. My tongue was also a bit furry and green. My oncologist is on vacation, so I called the ER at the hospital where he practices. I was connected to an actual physician after a reasonable time, and I’m happy to say that between my bad German and the relatively good English spoken by the people on the other end of the phone, all was easily understood.

If i had pressed, i think the physician would have written me a script for an antifungal and sent it to a nearby apothek. i was pretty sure i was developing a fungal infection, but I’m not going to play doctor, and we had to go into the city anyway. So i arranged to arrive at the ER at noon. It was quiet, the nurse at the station remembered my call, I filled out a form, saw the doctor and left with a script for the antifungal by 12:15. The ER didn’t have the right dosage on hand and to construct it from the available doses would have been hard. Five minutes in the apothek, no crap about co-pays or authorization and I had my meds. And this is an apothek I’ve never been to before – of course my insurance card with identity chip made that easy.

Switzerland is not the US, it is much smaller. Health care is expensive, but not more expensive than the US, and it is much better organized and coordinated. And providers actually communicate with each other – makes a huge difference. Once again, I am happy to be having my Breast Cancer Adventure here. Given that I have to have it somewhere. ;-p

Had my 4th taxol last Thursday. Other than the fungus, it went well. Good energy, clear head, no rxns. No sign of neuropathy either. Am 1/3 of the way done with Taxol, 8 more to go. Hair and eyelashes seem to be returning too. We move ahead.

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.