Archives for posts with tag: Family History

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.

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.

I don’t consider myself to be religious. I don’t know what I believe in, although I do believe that spiritual connections exist.

The start of my own  breast cancer experience is bracketed by my mother’s death from breast cancer 20 years ago. Exactly 20 years ago.

I had a mammogram and ultrasound Dec 20. The radiologist looked at the lump and said – Fibroadenoma, probably benign, but to be sure we can biopsy. Or follow. I said, biopsy. Good thing I did. The next day, Marco and I found out that it was not benign, but rather poorly differentiated and thus malignant. This was Dec 21, and it was the day 20 years ago that we brought my mother home from the hospital, to die.

Someday I will write more about my mother’s experience. For now – she continued on a steady decline and died on January 14, 1991.  My sister, two aunts, hospice nurse and myself were all there. My father had just left for work. It was a bit past 10AM in the morning, a mild, sunny day. It was peaceful. As sad as it was, and while a part of me will always feel it was unfair that she died so young, there was something about it that seemed so natural.

On January 14, 2011, Marco and I were driving back from meeting my oncologist. He was very optimistic, I had a good prognosis, my scans were clear. We felt more hopeful than any time before Dec 21, when we first learned that the lump was cancer. At one point, we were driving down the A6, south of Bern, looking at the Alps – you can see the Jungfrau, Eiger, Moench if it’s clear enough. It was a gorgeous afternoon. It’s a spectacular view, if you’ve not seen it. The Alps here really remind me of quiet, grave, learned men and women, watching over us.

And at this one point,  I just had this feeling – tingle, puff of air, whatever, and somehow my mother and I let go of each other. Not that we don’t care for and watch out for each other, but rather, our paths won’t be the same.

And when I checked the time it was a little after 4PM, Central European Time, 6 hours later than Eastern Standard Time – 10 AM in Pittsburgh.Maybe it’s an angel, maybe the hand of some god, or maybe my subconscious rationalizing new information.

Whatever it was, it was a profound moment for me. The part of me that always has to make a joke wants to queue Twilight Zone music…..because it feels a little squirrly to be profound.

Have to get this over with so that I can continue on.

The impetus for this is that in November I found a lump in my breast, had it checked, and it appeared to be a benign, fluid-filled cyst. But I had a mammogram last week and it was no longer a cyst – now it appeared to be fibroadenoma, still benign. I wish. The biopsy revealed some “poorly differentiated cells” appearing malignant. A further scan suggested that lymph nodes in my armpit don’t appear to be especially swollen, perhaps a good sign.

So on Wednesday I’ll have a sentinel node activation and a lumpectomy on Thursday. It’s a weird place. It’s Christmas, a total surprise, and 20 years ago this week we brought my mother home to die – of breast cancer. For me, it’s hard to think of breast cancer as anything but a sad, painful end. At the same time, I’m not my mother, things have changed in the 20 years since her death and 25 years since her diagnosis. But it is hard, that’s for sure. We are on a rollercoaster of emotions.

I will also discuss some other stuff in this blog – adventures in cooking, my research, mouth off about body image, my dog and life as an American Expat in Switzerland with my Dutch husband.