Wednesday, October 1, 2014

Occupy Pinktober: Repost of Telling Knots Post Pushing Up Daisies by Tracy Willis

A very special woman, Telling Knots, on her blog Telling Knots is holding her own Pinktober sit-in. She is featuring people who have been touched by metastatic breast cancer. The posts are articulate and speak to the point much better than I can. She has invited her readers to share her posts. Below you will find her first installment to Occupy Pinktober.

Pushing Up Daisies by Tracy Willis

Project Occupy Pinktober begins today. Throughout the month of October 2014, I am bringing guest posts from people who have been touched by metastatic breast cancer. Breast cancer is not pink and fluffy; it is a killer disease. This is not about saving breasts; it’s about saving lives. Thirty percent of everyone who gets breast cancer will develop metastasis. There is no cure. The goal of treatment is merely to prolong life and reduce suffering. We deserve better. Please like and share these posts to spread the word. Thank you, Knot Telling 
A flower in Tracy's gardenGone to meet their maker, out of their misery, travelling a different path, pushing up daisies. Call it what you will but for goodness sake don’t say dead.
Great-great grandmother – dead – age 45.
Great-great aunt – dead – age 47.
Great grandmother – dead – age 50.
Great aunt – dead – age 44.
Grandmother – dead – age 49.
Aunt – dead – age 50.
Mother – dead – age 46.
If you say dead and list the names it looks like the roll call on a war memorial. In fact it’s worse because no epitaph contains so many members of the same family. These women, my family, did not go to war. They were placid, careful, peace-loving citizens quietly going about their lives and striving to raise their families. Children that many of them never saw grow up, get married, or have families of their own.
You see, each of these women developed breast cancer in their late 30’s or early 40’s. Each went through countless surgeries, treatments and indignities. Each thought they’d come through.
No-one made it.
Not one of them survived. . .
Metastatic breast cancer killed them all.
I knew two of these relatives, my aunt and my mother. The rest were long dead before I was a glint in anyone’s eye, before my parents even met each other. Mum and Aunt Jen both developed breast cancer around the age of 40 and they both resolved to survive. They lived in different parts of the country but both had good surgeons, skilled oncologists and attentive nurses. None of that made any difference. They both developed metastatic breast cancer and within months they were both dead. Not a day goes by when I don’t think of them, think of what they went through, wish they’d had that pink cancer – the one everyone survives – so they could still be here with me now. I cannot explain what coming from a family with a near 100% death rate from metastatic breast cancer feels like. A family that doesn’t carry the BRCA genes. I can tell you breast cancer is not a “good” cancer, the “easy” cancer, or the one with “really excellent prospects thanks to more advanced treatments.”  Just over two years ago at the age of 42 I was diagnosed with aggressive HER2+ breast cancer. There was nothing good or easy about it and my chemo regime was almost identical to the one my mother went through in 1994!
So you’ll have to forgive me when I state, point blank, that pink is for Barbie NOT breast cancer and the only similarities between me and Barbie are our fake, nippleless breasts. I hope, want, need, to be the first in my family to buck the metastatic trend because without that hope I’d be lost. Breaking my family’s hearts in the same way mine was broken in 1996 is a thought I can’t begin to entertain. Only time will tell.
Breast cancer remains an unforgiving disease with unforgivable consequences. Those living with metastatic breast cancer, their loved ones and friends spend each day on the edge of the void. For them death is coming and breast cancer’s true colour can only ever be black. Black as the void, as deep and dark and empty as furthest point in any possible universe.
Please stop pink ignorance.
Please start facing reality.
Metastatic breast cancer continues to kill far too many women across the globe.

About Tracy: “I’m 45, married, and Mom to a 21 year old son. By profession I’m a technologist, have always been a career woman and am now rebuilding my career following a HER2+ breast cancer diagnosis aged 42. I’m also rebuilding my stamina and mobility because Herceptin left my knee and ankle joints in very bad shape. I love cats (have seven of them, mainly rescued) and find solace in nature, photography, painting and drawing. I live in the countryside, work for a university and inherited a stubborn streak – probably just as well given family history. I blog about cancer and the trials it brings at and potter about in to escape through art.”

Since Cancer...

It's October. Kind of obvious, I'm aware of that. What I think the whole world is aware of is that October is Breast Cancer Awareness month. So aware to the point that it has been dubbed Pinktober. It is the month that makers of all things pink drool over, and the dirty little secret is that most survivors dread.

I don't need someone to turn the world pink to make me aware of breast cancer. Believe me I am highly aware of it. And while it no longer fills my every thought, it is never far away. It doesn't take much to call it to the table.

Yesterday was a heavy reminder to me. I have been profoundly changed by my experience with breast cancer. I went to get the carotid ultrasound not thinking much would come out of it except peace of mind. I am probably not wrong. But as I was leaving my doctor stepped out into the hall and asked if I would mind waiting a few minutes, and I was shown to a small conference room that I didn't even know existed. You never want to be invited into the conference room. The last time I had been invited into the conference room, I was told that I had cancer and that it had already spread. As I sat and waited for Dr. R to come in, my heart was racing. I was so panicked that I was nauseated and near tears. All it took to call my experience with breast cancer back was being asked to wait to speak with the doctor. Dr. R only wanted to discuss the blood work from last week. The totally blocked arteries that I was so afraid that I was going to be told about didn't happen. But the panic was real and that is just part of my legacy from breast cancer.

I have been wearing a sleeve and gauntlet for a month and a half now. My lymphedema was getting pretty bad and was beginning to cause constant pain. A lot of people have asked me about it. To be honest, I am tired of explaining that I have a condition that was caused by the treatment for breast cancer, and no, it will never go away. This is just another little piece of the legacy of breast cancer. If lymphedema was the worst that I have to deal with I'd be lucky. The other fall our from from the treatments I received are much more serious. but I never bring that up when I'm explaining the compression stockings. Seeing words like fibrotic changes to cardiac vessels and fibrotic nephropathy written in my chart is more than disturbing. So I just smile and say "Well it will never go away, but it's 10 years later and I'm still here." That usually diffuses the conversation.

I came into work today and found out that the Health and Safety committee had a booth to sign up for the next blood drive and for the mobile mammogram. I spent a couple of hours today talking to women about the importance of getting one. We had 72 slots to fill when I came in. When the benefits fair was over we had filled 57 of them. We have another benefits fair at another building tomorrow. Claire and I will be there signing up women. I think that we are going to end up with a waiting list again this year.

Monday, September 29, 2014

Lab Report

I called Dr. R's office this morning and had them email me the lab report from my physical. It was surprising. My chloride and magnesium were a little down, but not as much as they were in June. My sodium levels were the troubling result. I have been hospitalized with higher sodium levels, it is really down. That had not been mentioned in the phone conversation on Friday. I do not restrict salt in my diet, and I eat an obscene amount of it. My diet today consisted of instant oatmeal with salted butter, home made southwestern beef soup and gluten free cornbread, pumpkin cheesecake, hummus, gluten free bread and grapes, easily 3.5 grams of sodium. And yet here I am, hyponatremic again. The other surprising thing in the results is that I am still anemic. My blood counts have hardly risen since June. My b12 levels were good, but it hasn't caused a rise in red blood cells. I will see Dr. S in November. I am thinking about seeing if I can get in earlier than that. That I've been anemic since March is probably something that I should discuss with my hematologist.

I go for the carotid ultrasound tomorrow morning. I'm glad that I had to call Dr. R's office for the lab results because I was thinking that it was on Wednesday. This merry-go-round keeps cranking out it's carney music and I can't seem to find a way to jump off.

Saturday, September 27, 2014

Lab Reports

I didn't hear from Dr. R. It was kind of strange because he always calls a couple of days after an appointment to tell me the results of the blood tests. I called yesterday (Friday). Dr. R wasn't there. Dr. L was. I like her, but I'd rather deal with Dr. R. Apparently Dr. R. hadn't read the results of my tests yet. That is very odd. This is the first time that has happened. Dr. L was concerned about my electrolytes, especially my magnesium and chloride levels. The nurse said that she wanted to find out why. I told the nurse about the thickening on my left adrenal gland that produces too much aldosterone. I told her that Dr. C doesn't want to operate as long as my blood pressure is stable. Apparently Dr. C hadn't communicated with Dr. R about it. That was disappointing. I sent the report about the CT scan and asked that Dr. C send Dr. R the results of the last 24 hour urine tests. After I hung up I thought that I would like a copy of the tests. But they called after hours, so I couldn't call back. I will call first thing on Monday. The problem with this is now I have hope that Dr. R will suggest a better plan than what has happened over the past 8 years. It will be hard if he doesn't.

I haven't done much today. I made my bed and washed the dishes, but beyond that I don't think that I have done much. I did make myself a virtual feast tonight. I made southwestern beef soup, with gluten free cornbread and pumpkin spice, apple cheese cake. My gosh, you would have thought that I'd cooked for company;

So I have a few deeper posts that I want to write, but I need to think them through. It isn't thoughts that are going to make me popular with anyone.

Monday, September 22, 2014

It Must Be Fall

In the fall and winter I drink a lot of hot tea. It has been stored in three boxes in my larder, but it takes up a lot of room. I have been considering what I could do to freeing up some space and came up with this. I moved the tea to a basket that I had sitting around taking up space in my tiny apartment without being useful. It's as pretty as I would like, but it works. I know that I could use up what tea I have before obtaining more, but the truth is that I'm more than a bit cheap. I have a few boxes that have been give to me by friends. the bag/box of Irish Breakfast tea was a Christmas gift. Some of the loose bags came in a Valentines Day gift from another friend. The box of mint tea came from a friend while I was trying to tough it out at work with a migraine. It actually did help. The rest are bags that I snagged out of conference rooms after meetings. Our department pays for them, and if we don't take them the caterers will and resale them to us at a later date. I get so many that way that my storage space at work overflows. My basket is open to everyone to come get tea, but only a few ever do. So I bring some of the chill out herbal ones home to drink on cold nights. I'm planning my tea stash, so I think it must be fall.

The other thing that I have picked up again this past weekend is knitting. I'm not sure what this is going to be, but I'm considering making a patchwork afghan for myself. Or maybe just a throw. And I'm not even sure if I will keep it for myself. I may give it to someone else.

My last post sounded to a lot of people like I am despondent, and after reading it again, I can see their point. But thinking about it, maybe I'm just going into hibernation mode a bit early, with a touch of seasonal depression setting in. I think that Mollie maybe feeling the same. She texted this afternoon asking if we could have dinner together. I answered and asked where she wanted to go. She chose a restaurant that was a family favorite from when she was a small child while we were still a whole family, with a mom and dad and three kids. The food is still the same, though much more expensive than it used to be. She and I shared a plate of Special Nachos like we did when she was a child. It is still served in the giant portion that we remember. Well, I remember. To her the plate had shrunk. Not really, but she was 6 when we used to eat there regularly. We both took home a portion that is a good size for another meal. The impetus to clean out the larder was because I'd like to stock up on a few more staples so that next time she wants a family meal, I can make it for her at my home.

On an outside note, I didn't hear from Dr. R about the results from the blood test. It either means that the lab doesn't run tests on the weekend, or that Dr. R is having them run again. I usually hear from him a day or two after tests are drawn. I hope to hear from him tomorrow afternoon.

The Dying of the Light

The autumnal equinox came and something whispered to the the trees. Suddenly, it seems in the matter of a day we stepped from the dog days of summer into a gentle cooling of the air that announces that autumn will soon be on us. The deep luscious hues of greens are slightly fading. The stream seems more hushed. The sun rises later and sets earlier. The geese who have been practicing their v's since the end of July are now fully in formation. The sparrows are beginning to huddle together in the blanket of flight that announces winter is on it's way.

When I was a child I loved this time of year only second to the beginning of spring. But now I seem to look at it with resign. Though the forest is beautiful in it's fall regalia, the cold of winter will creep into bones that ache with the chill. The joy of the holidays seem to be cheapened by the commercialism that has claimed it. Festivals do not have the feel of a community carnival. Now their are booths with promoting politics and stages where aging rock stars try to reignite a career.  No longer a Rockwellian picture of families huddled around a table for a feast. We now have autumn trees and Black Friday, Cyber Monday.

I stand and wonder at how the awe that I used to feel has left. The changing of the seasons to me has held the overwhelming spiritual power as that of standing on a mountain or in front of the vastness of the ocean. Though I now revere it, it doesn't bring a feeling of joy, but that of resign. I see the force of nature reminding me that though I claw and cling and rage for life, this is a battle that I will not win. The scurrying of the animals tells me that I am leaving much undone. I know that I am not alone in the way I feel, but it seems all too soon. This feeling belongs to old women who sit on porches, and should not to me.

So autumn peeking around the corner feels like standing on the edge and staring into eternity. It is deeply spiritual and extraordinarily heavy.

Saturday, September 20, 2014

Kinesthetic Memory

I am a very kinesthetic learner. In other words, I learn best by touching, feeling and manipulating things. I understand when I read things or watch them being done, but I learn best when I can touch what I am trying to learn. I knew this about myself for a very long time before I found a social skills report that my mother had stored in her hope chest. The social worker who administered the test had included a notation about it.

She looks like her father.
A few weeks ago my cousin posted the picture on the left on her anniversary. I immediately recognized the dress. She and I have always liked each other, but because of family matters we didn't grow up close to each other. I knew that her mother and another of our aunts had a double wedding and that our grandmother had made matching wedding dresses. When I saw this picture I knew right away that she was wearing her mother's wedding dress. Her mother was happy that I recognized the dress, but my cousin was curious about how I knew it was her mother's. I posted the picture on her FB wall. It is a picture of my father and me on my wedding day. I was wearing the twin dress. The minute I saw the picture I immediately remembered exactly the feel of my father's stiff tux under my hand, the scratchiness of the bouquet and the feel of my head so close to his. It choked me up and I began to cry. My father died a few years after that picture was taken. It's been more than 30 years, but I still miss so very much.

I have other strong kenesthetic memories. They are usually connected to good things, happy things. I remember the feel of my babies hand wrapping around my finger shortly after they were born. I used a different finger for each so I would have a distinct memory of them. I remember the feel of them lying on my chest the night after they were born. I remember the exact feeling of floating down the Chattahoochee during summers. I'm glad this ability to remember the way things feel is selective. It is nice to have it just of totally good memories.

Yearly Physical

I saw Dr. R for my physical yesterday. It was a bit odd. Because I have to have fasting blood tests done I usually have 8:00 appointments. This one was at 10:00. The waiting room was full, which I'm not used to seeing. A lot of the people waiting had already been back. They were sporting IV lines that were well taped down. Also, they were being called back by nurses that I'd never seen before. I've been in there at least every three months for years. I'm pretty sure that I know most of the staff. I was beginning to wonder if I'd shown up on the wrong day.

It was Dr. R who called me back, not a nurse. He also did the things that nurses do like the weigh -in, bp, temp, medication list thing. I have never before seen a doctor do those things. I guess that they do things different in Russia where he trained.

He asked if there were any problems that I needed to tell him, I have been having a dry cough for most of the year. I told him about it and all of the things that I'd done to try to remedy it. He thinks that I am having a late reaction to the ACE that I was on, and changed it to an ARB. He listened to my carotid arteries though that he heard a slight bruit; he wants me to come back in for an ultrasound. He does them in house, so I won't need to check into the hospital. I am really glad about that. I'm not too worried about it. After being told that I only have slight blockages in other arteries I'm really not expecting to find much of anything.

He had his nurse give me my flu shot. Last year the same nurse gave me the shot. The shot didn't hurt at all. It didn't sting while the vaccine was going in and my arm didn't get sore. This year the shot stung a bit and my arm is sore. I'm also a bit achy, but I'll take that if it means that I won't get the flu.

While I was chatting with him I found out that the people who were waiting with IV's were there for nuclear stress tests. He also does in house echocardiagrams...I was very interested. It would be nice to not have to check into a hospital to have those things done. He quickly squelched that idea. He said that they were looking for vascular abnormalities and I needed someone capable of looking for electrical. He didn't feel comfortable with that. Darn. After I left I wondered if they could be done in his office and sent over to Dr. P to be read. I'll have to ask him about that.

I am beginning to see the value of having one doctor who knows me so well that he can see that something is wrong by looking at me. We work well together. UPS is offering Kaiser as a health insurance option this year. I know a lot of people who really like Kaiser. But I just can't leave the doctors that I have built up good relationships with.

Thursday, September 18, 2014

Blood Drive

The fall blood drive was today. I ended up working much longer than I had volunteered for. It happens every time I work one. People volunteer but forget or get called into a meeting etc. The outcome is that a few of us hang out here for long periods of time. I'm glad that I have a position that allows me to do it. As long as I have my laptop with me I can attend to most of the requests that come in from my department and still help out here. I'm also very lucky to have a management structure who really support the drive.

The drive itself is interesting. I get to talk with co-workers that I don't normally get to interact with. I must say, we do have some characters who work here. I've noticed that they prefer Nutter butters and cranberry juice to almost everything else. Since Keebler has been donating the cookies, Nutter butters are no longer available. It's been a year and people still ask for them. We always offer incentives for people to donate. It isn't really necessary because no one ever donates to get a water bottle or a tee shirt. The people who do usually have altruistic motives for it. Usually it's a strong sense of community responsibility.

It was an enjoyable day in the office today. I really like the blood drives.

Wednesday, September 10, 2014

And This Is My Body

No, I'm not going to post a picture of my reconstructed breast. I'm not that brave. I'm not that much of an exhibitionist either. Still, it has taken a very long time to come to accept it with all of it's scars. Today 10 years ago I underwent 8 hours of surgery to remove my cancerous breast and lymphnodes and replace them with muscle and fat harvested from my abdomen. It was brutal surgery. When I woke up I was quite sure that I would not survive it. For years, I wouldn't look at my body in a mirror. If I did, it made me quite sad. I don't know when that changed, but it did. Now I see it and it barely registers.

I've been thinking of seeing my surgeon to get a boob job on the other breast to make it match the reconstructed one. But then I realize how ironic that is. I got the reconstruction to match my healthy breast, and now I want surgery to make the healthy breast match the reconstructed one. Even more ironic, because the cause of the asymmetry is breast cancer, my insurance will cover it. If I'd been born with widely divergent ranges in size between my two breast my insurance would claim that it was cosmetic. Insurance companies are schizophrenic that way.

So why is it that I'm encouraged to accept my imperfect torso, but made to feel ashamed of my weight? Just a thought.