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Archive for the ‘Rural women’ Category

Milestone

I’ve passed a milestone. It’s been three years since my diagnosis and surgery. My risk of recurrence of triple-negative breast cancer begins going down now. I drove to Denver in the rain. I met with my oncologist who congratulated me and once again explained that my risk will continue to go down until, after five years, if it hasn’t recurred, it probably will not.

I had been afraid to talk about the anniversary, or to celebrate it. Superstitious feelings that I might jinx it? I don’t know. I drove home from Denver under a big blue Colorado sky. I realized I feel different now. I have been marking this time – the three years – knowing that my chance of recurrence during that time was high. I made it. Now I’m not just going to celebrate the anniversary, I’m going to celebrate every day. I want to shift from worrying about what might happen to thinking about all of the possibilities and potential for the rest of my life.

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The meadowlark that sits on top of the light pole and sings reminds me that it is Spring in spite of the cold and windy weather we’ve been having for two months. This morning we have dense fog, but the meadowlark is still singing. It is supposed to be rainy the first part of the week and then begin to warm up with chances of thunderstorms. I’m more than ready to turn off the heat and get outdoors.

Thursday is my appointment with my oncologist in Denver. I had my surgery three years ago this month. This is a significant anniversary, because my risk of recurrence peaks at three years and then starts going down.

“Women with triple-negative breast cancer were much more likely to develop a recurrence during the first 3 years following therapy with rapid declines thereafter.”

“. . . among the triple-negative group, the risk of distant recurrence peaked at ∼3 years and declined rapidly thereafter.” – Various sources

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When I was packing to go to Arizona, I had to stop going up and down the stairs for the suitcases and clothes because I got out of breath and had to use my inhaler and rest. The doctor recommended prednisone but I told him I thought if I could get out of the area, my allergies would clear up. 

As soon as I was in Arizona, I started walking, but got out of breath each time for the first week. I gradually was able to walk farther and three weeks later I was taking a long walk each day without using the inhaler.

Back home after a month at that lower altitude and warmer temperatures (and different allergens) I’m still using the inhaler only a couple of times a week, which is what my oncologist was wanting.  Because the Mayo’s report said that breast cancer survivors with asthma have a two-fold risk of metastasis to the lungs, I need to make controlling the asthma a priority. 

I don’t know if that will mean I move around more often, or if I go south for the winter, or if I will have to move there.  So far, so good.

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I put off finishing the ceramic tile job in the bathroom and laundry room for about a year because I work from home and I don’t have an office in town where I can escape the mess. And I only have one bathroom. And it meant the washer and dryer and other laundry things would be sitting in my kitchen.  And because I didn’t have the energy. But most of all because one thing invariably leads to another — the looming unforeseen.  

The men came and started work on the last nice day before our cold snap.  The next day it snowed and the wind chill was several degrees below zero. I don’t have a heated garage — actually, I don’t have a real garage —  so in order to continue working, the men put their tile saw on my back porch and fastened up plastic walls around it for a workroom.  My porch serves as my “workshop” until I build a real workshed, and it also serves as the mudroom and a place where my grandsons keep some of their things for plundering and adventures when they stay in the country.  

So the porch holds the tool box and on the wall above hang jars full of different sizes of nails, hand saws, hammers, and other tools.  Hanging on pegs are John Deere and dairy caps, along with my down-filled red winter hat with Holden Caulfield earflaps that I bought for winter vet check days. Shelves hold stacks of magazines that need to find their way out the door, more tools, and normal miscellaneous in a house with boys — little packages of bobbers, a baseball, a pack of BBs, canteens for hiking, a tent in a bag, and below is the footgear – boys’ workboots, green Wellies,  and Sorels with winter liners.  

On another wall is a gunrack holding several fishing poles, a BB gun, slingshot, two sets of binoculars and a canvas fishing tackle bag.  Cabinets are crammed with canning jars, oil lanterns, flashlights, housepaint, glue guns, sandpaper, oil and filters for the riding mower, and just about everything else I’ve ever thought I needed for a project whether I got it done or not.  

In other words — a lot of stuff. That should be in a garage and a workshop.  

Everything Including the Kitchen Sink

Everything Including the Kitchen Sink

The tile saw buzzed and whined and buzzed and whined while I sat behind a closed door doing my paid work and trying not to think of what was going on around me in my house and hoping I didn’t need to use the bathroom. When the men were done cutting tile, everything was covered with a thick layer of white dust. A very thick layer of white clinging dust.  

Then we discovered the 220 outlet for the clothes dryer didn’t have a proper ground wire. That became apparent when the man washing down the tile with a big, wet sponge got shocked. An Unforeseen Thing. So I called the electricians who came to replace the outdated wiring and outlet. They needed to get into the cellar, but the tile saw in the temporary room full of tile dust was sitting on the cellar door, which is located in the floor on the porch, and there was nowhere to put the tile saw because the wind chill was still minus 26.  

Wednesday, when I had to go to an actual real time work meeting, I walked out the back door with strips of tile dust on my slacks and jacket.  I reached the Babbling Stage yesterday morning and had to tell myself this would soon be over — nothing like the neverending “two weeks” of months-long complete remodeling projects, such as the one I undertook several years ago when I had to watch Money Pit for comic relief and perspective.  

This morning the tile work is complete. The only thing left is to touch up the baseboards and install a threshold.  

And put everything back and clean up all the rooms.  

Must go now. Men entering the premises . . . . to be continued. . . .

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[Disclaimer – I don’t necessarily agree with or endorse what Dr. Lictenfeld said in his blog; I am just reprinting it here as it was originally written. Is an increased survival rate of 3.3 months “significant”? – Rural Womyn Breast Cancer Journal]

New Hope In Treating Triple Negative Breast Cancer
Posted on 6/1/2009 by Dr. Len Lichtenfeld
American Cancer Society Dr. Len Blog

One of the papers presented during yesterday afternoon’s plenary session at the annual meeting of the American Society of Clinical Oncology (ASCO) captured my attention for a couple of reasons.

The study reported on a new drug code named BSI-201 in a trial where the researchers treated women with a form of breast cancer called “triple negative.” Triple negative breast cancers (or TNBC) are called that because they don’t have estrogen or progesterone hormone receptors and are negative for a genetic marker called HER2. As a result, they can’t be treated with some of the more successful breast cancer treatments such as hormonal therapy or targeted drugs such as trastuzumab (Herceptin ™), They tend to occur in younger women and especially in African American women. Unfortunately, they tend to be more aggressive than other forms of breast cancer.

This new drug acts against something called poly(ADP-ribose) polymerase-1, or PARP-1. If you think that is a mouthful and don’t understand what it is, don’t feel bad. Neither do I and neither did much of the audience at yesterday’s presentation. In fact, this was so new to the doctors in the audience that they had a special tutorial in PARP-1 before they presented the data from the paper, so everyone could learn something about the science behind the drug. Basically, this enzyme is involved in gene repair and cell proliferation, two key targets to control cancer cells. BSI-201 inhibits PARP-1, and it is thought that it works best by adding it to certain chemotherapy drugs as opposed to using it by itself.

In this trial, women with TNBC with metastatic disease—a particularly difficult situation to treat—received chemotherapy with two drugs (gemcitabine and carboplatin). Half the women received just the chemotherapy, and the other half received the drugs with the addition of BSI-201.

The results, in my opinion, were impressive: 62% of the women who got BSI-201 responded to the treatment compared to 48% in the “control” group that got just the standard therapy. The time it took for the disease to progress on treatment in the women who received BSI-201 was 6.9 months, compared to 3.3 months for the women on the standard treatment arm. The overall survival increased from 5.7 months in the control arm to 9.2 months in the BSI-201 arm. There was no apparent increase in side effects from adding BSI-201 to the treatment program.

Those improvements are all significant, although obviously don’t represent the types of increased survivals we would like to see. But as I mentioned, women with TNBC who have metastatic disease unfortunately don’t do well with current treatments, and this new drug represents a true ray of hope in a frequently hopeless situation. I would also note that some of these women had already received prior chemotherapy, which in effect stacked the deck against seeing any success with this new drug regimen.

I was so intrigued by the results that I tried to find out more about the company that invented the drug. The name of the company is BiPar Sciences. You would think that this would be a large company to have made such a significant discovery of a drug that represents an entirely new class of therapy.

What I found out was that in fact the company had recently been purchased by a larger pharmaceutical company, so it is no longer a “stand alone.” I also was told that the company still pretty much works on its own, free of much of the constraints that usually come along with being part of a much larger organization. The number of employees who worked on this exciting discovery and clinical trial? About 20, according to my source.

And, on another front, it appears that this clinical trial was done in large part through member practices of US Oncology, a nationwide oncology practice organization, not through a major university or university consortium. So it reinforces the fact that private practices (and their patients) that commit to clinical cancer research can make significant contributions to advancing our knowledge and capabilities in cancer care. If we could see more of this type of commitment and participation by non-academic, community based oncologists we could dramatically increase access to clinical trials and get more cancer drugs tested nationwide.

So here we have one of the more exciting advances in chemotherapy that I have seen in a while, and it didn’t take a giant company or major universities to get the job done.

For women with TNBC there is now a bit more hope that we can help them in their time of need. The trial reported here at ASCO was what we call a phase II trial, which is essentially early stage proof-of-concept. The next step is a phase III trial, which will treat more women, and that is scheduled to start this month. The drug is also under investigation in other cancers as well.

Here’s hoping that this research opens the door to a new and exciting frontier in cancer research and cancer treatment. It clearly looks that way to me.

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hollissiglerHollis Sigler was a visual artist who created a body of work called, Breast Cancer Journal: Walking with the ghosts of my grandmothers. In 1985, she was diagnosed with breast cancer and had a mastectomy, chemotherapy, and radiation treatment. At that time, her disease was a much more private concern and she got on with her life, “hoping that she would be among those who had experienced a sobering confrontation with cancer, one that for the most part was resolved.”

In 1992, the cancer was found in her bones, and “she got angry, and then she got busy. Her frustrations with the confusing and meager flow of sometimes contradictory clinical information, with the lack of outreach resources, with the sense of being isolated with a potentially terminal disease while simultaneously certain that everywhere there were thousands, no millions, of women in precisely her position,” led to her activism and to the journal.

She began publicly acknowledging her cancer by painting to express not just her own experience, but her family history, and as political consciousness raising. Both her mother and grandmother had breast cancer.  Her paintings express the challenge of the disease, “all its moments of despair, revelation poignancy, sorrow, exhilaration, agony, hope, dejection, frustration, and tenderness,” James Yood wrote in one of the introductions. The other introduction was written by Susan M. Love, M.D. 

Sigler came of intellectual and artistic age in the 1970s and she understood those aspects of feminism that led to publications like Our Bodies, Ourselves. “She knew that women, one by one, often beginning in isolation, had created new networks of communication to provide exchanges of information that would directly address critical issues in women’s lives, that would combat those structures, intended or unintended, that had hitherto frustrated women’s efforts to inform themselves more fully.”

Sigler also had experience with art activism through her role in the Artemisia Gallery, a feminist cooperative in Chicago the 1970s.

Sigler describes the creative process throughout the series, and how it evolved as she gained some emotional distance. The first works directly related her feelings and experiences with the diagnosis, and later became more reflective. One group of drawings was done almost immediately after readings of Tibetan Buddhists, specifically The Tibetan Book of Living and Dying. Sigler said that that book, along with The Cancer Journals of Audre Lorde, gave her perspective about her attitude toward permanence.

Sigler was featured in “Paint Me a Future,” a documentary film about art therapy produced by Dr. David Kaminisky, Palm Springs, CA.  Her breast cancer journal was published by Hudson Hills in 1999.

Sigler was born in 1948 in Gary, Indiana and died March 29, 2001, in Prairie View, Illinois.  She received the distinguished artist award for lifetime achievement from the College Art Association just one month before she died.

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Journal collection

Journal collection

While going through my sketchbooks, I’m running across random journal entries that are expressions of some of the more difficult and frustrating times I had during what I now think of as The Year I Spent Having Breast Cancer.  They were too immediate and personal when I wrote them to include in this online journal. Now I see that this story isn’t complete without at least some of them, so I’ve started another page called The Parts I Left Out.  I am going to add entries as I run across them, so it won’t be in chronological order for the time being.

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