When did it change?

As I was googling breast cancer news this evening I came across this video. Apparently a British researcher, Dr. Kat Arney from Cancer Research UK, is placing the blame for the increased incidence in breast cancer diagnosis' on lifestyle choices. This is in stark contrast to the message that I recieved while I was being treated and is expressed here where the Breast Cancer Information website states,

"Unlike lung cancer, which is closely tied to external causes and triggers, like smoking, it's looking more and more likely that breast cancer is tied to genetics."

And they go on to say,

"Above and beyond genes the two risk factors that seem to come out most often are age and gender"

This article that was written in 2009 and is posted on a website that is HONcode certified is more in line with the message I recieved when I was diagnosed in 2004, and has been confirmed by my oncologist. Yet, it seems that more and more I get the message in the first video. Still, when I talk to my oncologist, he assures me that I couldn't have changed getting breast cancer.

On February 4th, I went to Vanderbilt to participate in their Reach for Survivorship program. One of the messages that I walked away with was that I did not cause my breast cancer by my lifestyle. That it was a mutation called oncogenes that caused the cancer and that I couldn't have prevented it by eating right or exercising more.

And still the collective voice seems to say that breast cancer is a lifestyle disease. When did it change? And if it did change, does that make me a bad person because I got cancer? Am I an irresponsible enemy of the people who wastes health care dollars because I was negligent in caring for myself while I was taking care of everyone else? Is anything really gained by the criminalization of the patient? Do caregivers feel more justified in their anger if the patient did this to themselves? Does it mean that insurance agencies don't pay as much because I can be blamed for my illness? Is my employer off the hook? Can they look at someone who eats potato chips and negects to floss their teeth and say "you live a lifestyle that is unhealthy, so we aren't going to hire you?"

When did the patients become the pariahs? When did it change?

Expert Opinion

“The thing is: every woman is at risk. And every woman needs to do everything she can to protect herself.” Marissa Weiss on who is at risk for breast cancer.

You will never understand

Our church built a beautiful building. It was a blessing that we could even accomplish it. It was more than a blessing, it was a miracle. We were in an old historic building that was at the corner of Main and major crossroad. It is the corner of center of town. But the building was old. The only well built building was over 150 years old and had major issues. The rest of the buildings were less well built and issues don't even come close to explaining it. If we put the nurseries in the safe area, we had mothers, some of them pregnant and with small children, climbing three flights of stairs. If we put them on the main floor, the babies were in danger because the buildings were on the main road without lee way. The buildings were on the curb. An errant car could wreck into the building and crash into our nurseries. We had nightmares about it. And the fellowship halls, well, they were up on a third level. The older people, the weak and the handicapped couldn't attend fellowship functions. Add to this that the main bathrooms were either on the basement level or the third level. On the main level were only four small bathrooms, two each for men and women. Factor in malfunctioning heaters and AC and random vermin and you have an idea of what we were facing. So when the city came to us and offered us a phenomenal amount to sale and build elsewhere, we jumped. We were all into building a new building. We could use half of the proceeds to erase our debt. We could put aside an emergency fund to care for the needs of the community. But best of all, we could have a building fit for our needs that carried no debt with it. The collective knowledge of the community allowed us the knowledge to build the facilities to our specification. The new building is wonderful. We have a coffee shop, a fireplace, a half court basket ball court. Yes, the basket ball court is a drawing feature. When our bass player Les, and a member of the congregation decided to have a one on one game, well, it wasn't a big surprise. The surprise was that the bass player spent his last few minutes on the court in the new church. He made a perfect lay-up, and was on the floor before anyone turned to see him. The paramedics were there in seven minutes, but it only takes six to die of sudden cardiac death. Les was gone that fast. Our church has been in mourning. The church as a whole reacted appropriately. The memorial services have been meaningful.

But a funny thing has come from it. Several years ago when my cardiologist was chiding me for having gained so much weight, he told me that the excess weight could prolong my QT interval, I could die of sudden cardiac death. I looked at him and told him that it beat the hell out of cancer. He couldn't argue with me. He knew that I was speaking from personal experience that he had no personal knowledge of. Still, there is that thing in me that keeps clinging to life. Even though when I give my best effort to stay alive, I prefer to go home. But the crazy thing that I found out with Les' death is that I am not alone. Another member of the band, a lady who has two handicapped sons, let me know that she is looking forward to going home. But she isn't the only one. Sissy, who was recently left by her husband, and takes care of her mother said at a recent dinner that she wants to go home. The announcement was met with shock. Why would a healthy woman want to die? But I think that is where we are. We understand that we are needed here, but we long for the better country.

Redbuds

The first official sign of spring in the south is the appearance of buds on the redbud tree. That is why this particular tree is one of my favorite. The house that I grew up in had one right outside my bedroom window and I would set up a redbud watch beginning on February first. Now I look for them when I arrive in the garage at work. With this winter being cold and long, today was the first glimpse I've gotten of these wonderful buds. But they are here at last. It means that winter's grip has finally been broken and we can quit using the heaters soon. Yeay for redbuds! I get excited every year when I see them.

Well Hey Now, It Might Be Spring

The weather is beautiful considering that it was only a couple of weeks ago we were cringing at the forecast of another snow day. It would be tempting to declare it spring.  This early in the year, I don't trust it.  I know that there is probably more cold weather ahead until I can put the sweaters away.  But for now I'll open up the windows and let the warm fresh air in.

Not Spring Yet

I'm sitting in Jimmy John's on Roswell Road after having a Hunter's Club Unwich with extra tomatoes and cucumbers and no mayo. It's a good and filling lunch that I enjoy. Unfortunately with the commute here, it's a treat to come. Today the weather will be reaching into the 60's after a winter that was too cold and had too much snow and ice. We are all more than anxious for spring to finally get here, but it's not here yet. The wind is blowing through the open door and is making me bundle back up in my coat. Bummer.

On a different note, yesterday I was feeling a bit lost. After spending the morning at Les' impromptu memorial service, I took Lizzie to lunch at Lenox Square. Even having grown up in the area and creeped the mall when I skipped out during high school, I couldn't make heads or tales of it. It took us an hour to find the food court and maybe would have taken longer if we hadn't smelled the pizza cooking at CPK. Then while trying to find a bank for her to deposit her check, I was totally confused as roads that once were there are gone now and other roads go different places than I remember. After dropping her back off at Oglethorpe, I drove by the house that I grew up in. It was sad. There was a pile of discarded furniture sitting on the curb and "for rent" signs decorated the lawn. I almost took the number down to give them a call.

Today I am at work and feeling lost and anxious, like there is something that I'm forgetting to do. Not a good feeling.

Knowing when you are in the right place

Back in the 70's while I was in college, there was a guy who one Saturday afternoon got a call from home that told him that both of his parents had been hit head on by a semi-trailer and had died instantly. That evening his sister, who was still in high school, took her own life. By breakfast time there wasn't a single student at the bible college that hadn't heard what had happened. We were all kind of shocked when he showed up for chapel on Sunday morning. This was a guy who love his family. He had pictures of his parents pinned up in his room and spoke often of his sister. When he walked into church that morning, his pain was pallatable by everyone in the room. Still, the service went on as planned. We sang the songs, the pastor spoke and prayed a generic prayer, took up the offering and invited everyone to coffee after the service. No mention was made of the horrific tragedy this guy had experienced. I was furious. There were others who felt that it was wrong. That we, as the body of Christ had the opportunity to wrap our arms around him and let him know that he was loved, that he still had a family. He flew home that afternoon to arrange the funeral. He came back to school a week later, but withdrew from college shortly after that and I never heard from him again. That episode has bothered me most of my adult life. I felt like, what good is a church that doesn't get involved with the people who make up the congregation.

I have felt that the church that I go to now is different and have many reasons to think so. But today proved it beyond a shadow of a doubt. A few weeks ago, we moved into a brand new building that we designed to suit our congregation and built in a turn of events that could have only come from the hand of God. Because we as a congregation decided we wanted a building that would serve as a meeting place, a place for us to congregate and fellowship, our building includes a half court basket ball court. Yesterday several of the men from the church met there to shoot a few hoops. One of the men playing, a close friend, shot a perfect hoop and dropped dead on the court. The ambulance was there within minutes, but it was too late. Les had gone home. This morning, the songs the band had practiced with Les on Thursday were rearranged to include the songs that we associate with his beautiful Irish baritone. The sermon was dropped and instead there was a video to commemorate Les' life and the mic was opened to the congregation to remember him. His wife, children and grandchildren were there and we took time to pray and grieve with them. Because we have a new church building in a new location, we have been having a lot of newcomers join us. Today, they joined our impromptu memorial service. Still, it felt right. As a family and a body, it seemed the right thing to do to grieve our friend's passing and celebrate his life. It made me feel that I am finally in the right place.

Still, I am so sad, so shocked by Les' passing. It seems that the entire church is crying. It was hard when we loss Brenda a few years ago. Now Les is gone too.

The Problem

The problem with my attitude right now is just that I don't want to keep taking my food apart so that I can eat it. It seems that lately, no matter where I eat, I end up taking my food apart to get rid of the added carbs. It has started to get to me. I understand why I need to avoid the carbs and I accept it, but I wish avoiding the carbs was easier. They are everywhere and in everything. At breakfast with the women's group this morning I had to take the french toast casserole apart to get rid of the french toast so I could eat the eggs. Later while I was out with a friend, I had to remove the carrots from the salad that I was eating. I don't want to think the diet is too strict, but I'm really getting a sour attitude about eating. Or at least about how hard other people make it.

Second Saturday

Starbucks is crowded and noisy on Saturday mornings. A whole corner is taken up by a large group of about 13 women and children of various ages. I wonder if this is where the women's group meets. Then there are the teens taking up the entire porch, even though it's not yet in the 50's outside. I think I saw most of them taking up the Waffle House in the wee hours of the morning. And there is the study group, probably from Kennesaw University. I am glad to be alone here, though I'm sure there are those who are wondering why I'm taking up an entire table and I'm not even drinking coffee. Starbucks redeems itself with it's choice of TAZO teas.

I am here contemplating what I really want to see happen as far as my health care. I spent a lot of time and money last week trying to get a handle on what to expect, and the answer I got was a resounding statement that I could have crafted. I guess that what is left is just finally coming to terms with the truth of my situation. What they made clear are these truths:

1. I did not cause and could not control getting my cancer.
2. The treatments I underwent were appropriate and successful and were the best available options at the time I had cancer
   
3. There are no benign treatments for cancer and the treatments that I did caused havoc on my body.
4. I can't undo the damage the treatments did to my body.
5. Having had cancer puts me at a greater risk for getting cancer in the future.
6. I can't prevent getting a secondary cancer.
7. The treatments that I did put me at risk for health problems in the future including heart failure, diabetes and cancer.
8. I can't prevent getting the health problems that chemotherapy may cause.
9. The only things that I can do to make myself better able cope with whatever problems may arise is to be as healthy as possible now.
10. To be as healthy as I can be now I need to control my weight, blood pressure, glucose, cholesterol and stress level with diet and exercise and proper rest

In many ways and at many times I am starting to resent having to take such care. I want to be like the people all around me who seem to be walking casually through this life eating lemon poppy seed pound cake with their venti double cream caramel macchiatos. I am tired of multiple doctor appointments every month, of removing the carbs from every meal that I eat, of trying to figure out when in the day I'm going to fit in the work out. I resent the young jock outside with his feet propped up on the table near his friend's coffee smoking a cigarette.

I just want to eat chocolate.

Food Police

I have been seeing the fat doctor for three months now and in that time I have managed to shed 21 pounds. It's not an earth shattering amount, but it is still progress, a little more than a pound and a half a week. My doctors are pleased with the amount and quickly tell me the advantages of losing slowly rather than at "Biggest Loser" speed. Still, it is annoying to be out at a restaurant and hear the "fat" remarks. Currently, I am lunching at Starbucks to take advantage of a free drink coupon and the free internet, not to mention just being away from the office for a few minutes. So, standing at the condiment stand, I hear the rather anorexic looking generation nowhere's are behind me, I hear the blond say to the brunette "You're getting that?" with a bit of disgust in her voice. The brunette doesn't miss a beat and says in a heavy middle European accent "Yes, but I exercise a bit. Every morning in the gym." And I wonder, why is it that blondy felt the need to comment on her friends food choices and better yet, why the friend honored it with an excuse. Why shouldn't she just be free to eat what she wants? Sad that now it is socially acceptable to be food police as well as thought police. Has society gotten to the point that we are never free to just be who we are?

Real Men Wear Pink

Real men may not actually wear pink for any other purpose than to please a woman, but they should at least be allowed to wear red. Last Friday was "Go Red for Women" day and women everywhere were encouraged to wear red dresses in support of women's heart health. That's all well and good, but I can't for the life of me figure out why the day should be genderized. Both women and men suffer from heart disease and a day to promote heart health can be good for everyone. So, how about next year if we just have "Go Red" day and invite the guys to the party?

Today

I am tired tonight and getting colder by the minute. I should give up my Starbucks connection and make my way home. I have a new computer and in a few weeks I will purchase broadband service to go with it, but until then I will suffice with borrowing service where I can. However, one of the things that a long spell of not having my own computer has taught me, is that I don't feel as free to express myself when I'm not tucked away in my own corner. I get into an environment where other people are around me and music I don't control is being played and I get all self concious. I should go home.

More Collateral Damage

I was told when I finished treatment for cancer that I could expect to get back to normal, but to just expect a different normal. That may have been the best advise that I was given. As a result of the treatments that I did, I am at a greater risk for a myriad of health problems that I wasn't fully prepared for when I was making treatment decisions (The truth is that most of the decisions were made for me, and I was told what I needed to do rather than given choices.) Still, while I was told that there was a chance that the treatments may affect my heart and that because I had cancer I was at a greater risk for getting cancer in the future. I wasn't told about the host of other things that could possibly go wrong in the future. One of the things wasn't discussed with me was the possibility that the treatments may rob my bones and leave me susceptible to fractures. I had figured it out when my primary care doctors started asking for bone density scans and my "cancer" friends started having hip fractures and needing hip and knee replacement surgery. But today I read this article stating the obvious. Honestly, considering that the study only included six women, I'm surprised that it's getting any press. But I don't disagree with the claim that it makes. I just hope that it will be studied further. The most disturbing thing about this article is that it points out that even though I have had a clear bone density scan, it may not have picked up the problem that is causing the hip fractures. It leaves me feeling like a sitting duck once again.

History is written by the victors

I spent the weekend hanging out in Nashville after visiting the Vanderbilt Ingram Cancer Center Reach for Survivalship program on Friday. As I was wandering around downtown I came across this plaque. It isn't unusual in the south to see these sort of memorials, especially commemorating just about everywhere Andrew Jackson ever slept. (luckily not with whom.) I find it sad that we venerate this man to the point of a folk hero. Andrew Jackson was the seventh president of the United States and during his term of office signed the Indian Removal Act of 1830. The act was the legal authority by which genecide was performed on the Five Civilized Tribes. It is a wretched blot on the history of our nation. I wonder if there are plaques commemorating Hitler's life in Berlin?

Confession

I just bought myself a new computer after not having my own for about 5 years. The reasons that I didn't own one are a mixture of psychological stubborness. Basically, I was tired of shelling out money on computers that my children took over and ruined with indiscriminate downloads. So the results have been that I have been blogging on borrowed computers for the duration. I thought that having a computer of my own, I'd feel more free to let my creative juices flow and blog more often. It hasn't happened. I'm hoping that eventually that will be the case and I will begin to blog daily again, but for now, it hasn't happened.

Go Red

Charlie Rose told Barbara Walters that he imagines that after having open heart surgery that one day he will at some point just drop dead. He understands the reality that my lifespan can be limited by my next heart beat. Deep.