HAWMC challenge: Gobbledygook

Today is the last day of the HAWMC challenge.  I am surprised that I have done as well as I have. I only missed 2 days. One being my pass card day and the other when I was very ill with a stomach virus. You really don't want to hear the particulars. Today I am supposed to make up a word, it could be the combination of two words, and define it.

I have to admit that I did not coin this word, but it still qualifies as gobbledygook. The word that I'm using for this challenge is not very well known even in the realm of cancer survivors. Though it explains something that is usually vitally important to most survivors. The word is Cancerversary. It is also know as Survivorship Day. But I think that Cancerversary hits the nail on the head. Your Cancerversary is the day that you were officially diagnosed with cancer. So, on April 14th I observed my seventh Cancerversary. I almost said celebrated, but celebrated doesn't really describe the day. In a way there is a bit of celebration, because you wake up one morning and you say, "Wow! It's been seven years. I didn't think that I would see one year." And if you post it on Facebook, all your friends and family will congratulate you. But there is always a very somber remembrance to the day. I recall with vivid detail every minute of that day seven years ago. It can still make me weep. That was the day that my life turned on a dime, and it was awful. It is hard to actually celebrate my Cancerversary. What makes it equally harder was that a very dear friend's brother killed himself that day, and while I was driving home from the cancer center, I heard about it on the radio. So the day, every year, for John and I is a day of sad remembrance.

Still, it is important for me to remember the day.  For the types of cancer that are considered cured after so many years, each year clicks another year toward their cure. Unfortunately, breast cancer isn't one of those. It can recur even decades later. But the longer you can go between the original diagnosis and and the recurrence the better the prognosis is for going back into remission. The sad thing is that for now, approximately 24% of women who are diagnosed with breast cancer will die from it. Every year that I survive, I add more of my cancer friends to my "I Walk in Memory Of" list on my Race for the Cure tag. This year the list grew by two. I cried as I wrote the names on the list.  I do every year.

So next year when I say "It's my eighth Cancerversary, feel free to congratulate me. But please understand why I'm not throwing a party.

HAWMC challenge: Health Cliche'

I've spoken about it already during this challenge. I hate the cliche' "lifestyle disease". The premises is that some diseases even though they are genetically mediated, can be challenged by lifestyle. And while the premises is true, the application is dead wrong, because it is being used to blame the sufferer for their disease. Lifestyle? Obesity is secondary only to height in heritability. If you pay attention to your weight your whole life, you may be able to change the outcome. But what is more likely is that if you are that sensitive to it, like my mother you are more likely to become anorexic. Cancer? Don't smoke. Don't heat your food in plastic. Don't drink unfiltered water. Don't drink alcohol. Eat only organic vegetables and meat. On and on and on the blame game goes. "Your lifestyle did this too you. You aren't even trying. You are wasting our time and our health dollars. If you would lose just 5% of your body weight, we all wouldn't be having to carry you." But little is understood about the cause of obesity, and diets and exercise have a 98% failure rate. Have you ever been frustrated because the medical advise you were given for taking care of your infant changed between the first and the second child? Think about if you have type 2 diabetes and the advise seems to change daily. What if you tell your diabetes educator that you are using an insulin pump, and she tells you that she doesn't know how it works. How would you feel? How would you feel about having it labeled a lifestyle disease if you'd lost more than the recommended 10% of body weight and it was still an issue? How would you feel if you had a totally genetic heart condition, but because it is considered heart disease, it is marked down to being a lifestyle disease. I have been looking through my well documented genealogy and can almost ascertain that my great grandfather and my grandfather had lqts. I can prove my father and brother had it. But because heart disease is considered a lifestyle disease, I must have done something to cause it. It doesn't matter that I had it before I was born, before I had any choice to decide anything for myself.  I must have done something  to cause this.

I eat better than most people. I exercise almost every day. I don't smoke. I'm tired of hearing medical "experts" lecturing me about my lifestyle when I'm sure that I do more to protect my health than they ever will. I seriously roll my eyes at the label "lifestyle disease".

HAWMC challenge: Quote Day

“The thing is: every woman is at risk. And every woman needs to do everything she can to protect herself.”
Dr. Marissa Weiss on yearly mammograms for women over 40 

Today's challenge is to pick a quote that I like and write about it. I knew from the beginning what that would be. At the expense of seeming like all my friends are cyber friends, I am revealing that Dr. Marissa Weiss played an important roll in my recovery from breast cancer. I received my treatments in Atlanta and Dr. Weiss practices radiological oncology in Pennsylvania, so she wasn't one of my doctors. But this very giving woman practices medicine three days a week and the other four, she maintains a website called breastcancer.org. The site is full of information and support and for people living with breast cancer. The really helpful part for me, especially when I was in treatment, was the chat room. Without having to leave my home, I could be part of a support group that met pretty much 24/7.

In her quote, Dr. Weiss was speaking about her opinion of the new federal guidelines for mammography. If you aren't familiar with the discussion, about a year ago new federal guidelines for screening were announced that set off a fire storm of controversy. The guidelines changed from recommending that every woman receive a baseline mammogram at 35 and then yearly after the age of 40. Instead the new guidelines recommend that women discuss the need for mammograms with their doctors before the age of 50, and then every two years after that. The argument was based on the fact that most women are not diagnosed with breast cancer based on the findings of a mammogram or from monthly self-exams. Lumps are usually found during an exam by their doctors or by casual touching of the affected breast. And that mammograms expose women to radiation that can cause cancer to grow and false positives that result in unnecessary testing and stress. If I was tested according to those guidelines, I would be dead. I know a lot of breast cancer survivors that can honestly make the same claim. Dr. Weiss is one of them. You can read her story here.

But her very wise quote makes another point to me. It starts with "The thing is: every woman is at risk." I did not know this until I was diagnosed with breast cancer. I thought that since no one in my vast family had ever had breast cancer, I did not need to worry so much about it. The truth is that 80% of women with breast cancer have no family history of the disease. I've said it already in this challenge, and I will continue to say it, the number one risk factor for developing breast cancer are two things that you can not control. It is being a woman over the age of 40. If you fit into that category know what your breast look like; know what they feel like and get yearly mammograms. The best tool we have against breast cancer is early detection. A stage one breast cancer usually does not require complete loss of a breast, chemotherapy or radiation treatments. If like me, it is found at stage 3, you've bought the complete package. Protect yourself.

HAWMC challenge: Spirit Animal

Spirit Animal Day. Give you or your condition a spirit animal and write about yourself or it as though
you/it are that animal. What qualities of the animal do you or your condition possess that are positive? How is this a metaphor?

I think the sub-title of my blog gives my conditions a spirit animal. It comes from the advice given to medical students "If you hear hoof beats, think horses, not zebras." Which is good advice, unless you hear the hoof beats on the Serengeti, and the horses have stripes. Then maybe you should consider zebras.  The term "Flock of Zebras" comes from my son, who after hearing my third or fourth rare diagnosis turned to me and said "damn Mom, you have a whole flock of zebras!" He wasn't misspeaking the grouping. He was referring more to my quirky artistic nature than he was to a grouping of equids.

But not everyone of my conditions is a zebras. some,if not the majority of my conditions are definite horses. Breast cancer affects one in eight women during her lifetime. It's a horse. Heart disease is a horse. Metabolic syndrome which affects one in three adults over the age of 50, is a definite horse. Type 2 diabetes...yeah, it's a horse. GERD, well it neighs. Long QT syndrome and Conn's disease are zebras that are unfortunate to find in the same person. Especially when the horses neurocardiogenic dysautonomia and obstructive sleep apnea are also present. They fight with each other. Osteoarthritis? Are you kidding me? I don't know anyone over the age of 40 who isn't having trouble with one joint or another. It's a given that it's a horse. High blood pressure is such a horse, unless it is secondary, which means that it could be a zebroid.  You have to look at the cause. For the most part it can be classified as a horse. So on the Serengeti or on the Great Plains, I think the spirit animal of my many conditions would be horses and zebras.

Still, in the past I have likened cancer to Wile Coyote. Cancer wishes to consume the victim. It stalks it's victim's DNA and seeks ways to trap the victims cell structure and create a blood supply so that it will feast on the victims life source. To accomplish it's objective it sets up traps along the path of life that the hapless Roadrunner can never expect, or avoid without the help of luck. The luck of having a good gene pool, the luck of the lack of risk factors, the luck of early detection, the luck of effective treatment, just the luck of the draw. But you never know how long that luck will hold and there comes a time when your luck will run out. Will the coyote's plans at some point over power your immune system? Will the medical options to treat you run out before the anvil drops on your head? If you have had breast cancer, recurrence or a secondary primary cancer can happen at any time after the original diagnosis. "Roadrunner, Roadrunner the coyote's after you. Roadrunner, Roadrunner if he catches you your through." Yeah, the spirit animal for breast cancer should be Wile Coyote, even though it is still a horse.

HAWMC challenge: Red ink day

The challenge today is to find a post that I have written in the past and edit it.

This is a blog that I wrote almost three years ago after getting a prayer request from a friend. While I was pleased overall with the thoughts expressed, I don‘t think that I finished well.  It seems in my blogging I often pour my heart out, but I never reveal my uglies, a requirement for any serious writer. I know that I’m not a serious writer, but I would like to offer a quality blog. With this post, the emotions that I was expressing were so raw and close to my heart that I don’t feel that I finished the post well. I didn’t reveal the abrasion that was left on my heart. So I’m going to make an attempt to try again. Here is the original:

Deer-in-the-Headlights
I get an e-mail.  The notice pops up in the corner of any project that I'm working on letting me know that a message has come in and I click on it, almost automatically.  This one is from a friend and it's regarding a co-worker. "Please pray for X.  She just found out that she has breast cancer:"  And then once again in my memory, I'm back in the consultation room at the radiology suite. My mind recalls the  weight and the shock of the words that were spoken to me.  I remember walking out in a daze and wondering how I was supposed to tell anyone; wondering if I could command the words to cross my lips. In the now I begin praying for the woman and her family, even though I don't know her.  I pray that she will find the words and get the support that she needs.  I pray that the tumor is small and that it hasn't spread and that there will be a cure.  But to the side is the prayer for me, "O God, do not put me there again."  A deer is a deer.  Four years from now it will still be a deer, if it's found a way to avoid hunters and crossing the street at the wrong time.  I think it's the same with cancer patients.  We remain that as long as we avoid the alternative.
Posted by emmy at 11:20:00 AM
 

I’d like the opportunity to change it to this:

Deer-in-the-Headlights
I get an e-mail.  The notice pops up in the corner of any project that I'm working on letting me know that a message has come in and I click on it, almost automatically.  This one is from a friend and it's regarding a co-worker of his. "Please pray for X.  She just found out that she has breast cancer:" And then once again in my memory, I'm back in the consultation room at the radiology suite. My mind recalls the weight and the shock of the words that were spoken to me. I remember walking out in a daze and wondering how I was supposed to tell anyone; wondering if I could command the words to cross my lips. In the now I begin praying for the woman and her family, even though I don't know her.  I pray that she will find the words and get the support that she needs.  I pray that the tumor is small and that it hasn't spread and that there will be a cure.  But to the side I am also praying a different prayer is the prayer for me, "O God, do not put me there again."  A deer is a deer.  Four years from now it will still be a deer if it's found a way to avoid hunters and crossing the street at the wrong time. I think it's the same with cancer patients. Four years from now we will still have the experience of being cancer patients branded on our souls as long as we can avoid dying from a relapse or some other unfortunate condition.  We remain that way as long as we avoid the alternative for the rest of our lives. Hearing that someone has joined our ranks, does not bring us joy; just the opposite. It makes us concerned for the person, and it reminds us that there but for the grace of God we go.

So tell me please, what do you think of the revision. Is it any better than the original? Can you see any more of what is going on in my soul in the updated post than the original?

The Passion of the Christ

I am watching the movie again. It came out seven years ago, shortly before I was diagnosed with breast cancer. I am amazed how much more the suffering in the film affects me each year. The first time I saw it I was only a few short days from experiencing the treatment that would leave me praying to God," I can't heal from this. I'm afraid I will die." Every year after, the movie becomes harder to watch.

I worry about Mel Gibson. I honestly think that he is under demonic attack because of the movie. I know that it is not a popular assertion to make. But what else can you come up with? I pray for him.

I still think that the movie is one of the most monumental movies of all times. I just wish that there wasn't so much stigma attached for me.

Drawing Boundries

I just got a phone call that forced me to draw a boundary. I will go this far to help you, but that is all that I can do. And the person that is on the other side of that boundary is angry with me. She wanted me to do something that it would be unethical and dangerous for me to do and I refused. Please be angry and then understand my side of it and get over it.

HAWMC challenge: Best moment of last week

Good Morning, and Happy Easter. I hope you are enjoying a boiled egg and a chocolate bunny. And I hope you are finding this Resurrection Day a day that will bring you the hope that the world received when the angels rolled the stone away.

The challenge today is to write about the best moment of last week, and I have been replaying that moment in my head since Wednesday night.

I knew that last week was going to be challenging before it even began. The company that I work for is closing one of the buildings that we own and consolidating the workers from that location into other buildings around town. Half of our department is currently located in that building, so they are coming to us at the corporate office. In a lot of ways that is very good news. But, in the short term it is causing a lot of extra work for me because I am the facilities coordinator for our group. I knew that over the next few weeks I will be moving about 40 people around and to get ready for that, I needed to get the cube space right. So the first round of cube moves has started and I had 5 people moving last week. I also had 4 all day meetings that I had to coordinate, and I had 2 somewhat involved projects that I began. Any one of those things would have been enough to keep me busy all week long. I was feeling the pressure.

On Tuesday my daughter called from college to ask if she'd left her wallet in my car on Sunday. I checked the car, but didn't find it and made some suggestions where I thought she might look for it. The last time I clearly remembered seeing it was when I took her by the bank on Sunday to deposit her pay check. She took her wallet, but not her purse out of the car when she used the teller machine. She was on her way to class and then to work, but told me she'd check when she got home that night.

On Wednesday I was really pressed. I had 2 of the all day meetings in progress and was running around making sure projectors and polycomms and easels were where they needed to be and that the food was being delivered at the right times. I was also making sure that the 5 movees were packing for their move on Thursday. Then I got a text from my daughter. It said "I didn't find it" referring to her wallet. I knew that she had to be panicking, I would be. So I texted back and asked if she had time to get dinner with me and we could figure out what happened to her wallet. She jumped on the idea.

Leaving the office that evening, I was feeling a bit beat up. Nothing had gone terribly wrong all week, but I'd spent the whole week putting out fires, and I was only half done. Traffic was good and it only took me 20 minutes to make it to Oglethorpe where my daughter goes to school. All of the restaurants along Peachtree Industrial that I went to as a teenager are long since closed. There is a new cluster of restaurants across from the MARTA station, but the stalker from 11th grade works there so that was not an option. I decided to head over to Clairmont to see if the 57th Fighter Group was still open.

As I was turning on to Clairmont, my daughter asked if we'd gone to Kroger before or after we went to the bank on Sunday. Yeah, That was it! We went to Kroger after the bank to pick up some fruit and peanut butter.  She left her bag in the car, but took her wallet in. She must have left it at the cash register.

We were standing in the line at the customer service desk when she turned to me and said "We are so close to Tim's house, why don't we see if they can join us." Good idea, then I would get to see my son and grandson and daughter-in-law. I called Tim and he had a even better idea. He was making eggs and pancakes for dinner, and invited us over to join them.

I was walking past the picture window to the door of my son's house and Jack, my grandson was standing in the living room. He saw Lizzie and I walking up and a huge smile broke out on his face. He started bouncing up and down and skipped to the door. He was so happy to see us. Seeing that smile was the best part of the whole week. It made me feel so loved and wanted. What a gift.

I finished out the week and got most of what I needed to do done, but every time I began to feel beat up or abused, I thought about that smile. It was awesome. It's always the impromptu and unexpected things that mean the most.

Happy Birthday Abby

Happy Birthday Abby. It is so nice to see you happier than you were last year. And it was nice to meet your soon to be step-mother. She seems like a lovely person. I think she cares for you a lot. I so Hope you have a great birthday, and a very happy Easter. Enjoy the chocolate bunny.

HAWMC challenge: Dr Seusse

I think that this is where I’m going to use my pass card. I’m not all that in to writing poetry and as a confession, I never was that much in to Dr Seusse either. My first grade teacher read us “Green Eggs and Ham” and all I can remember was thinking in a much more innocent voice “wtf” and feeling pressured once more to eat things that I didn’t like. The requirement in my home was to eat whatever was set before you without complaints. There were too many children to cater to everyone’s likes and dislikes. Having one more adult demand that I clean my plate didn’t sit well with me. Then later was “Cat in the Hat”. Talk about a frickken disaster to a child being raised in a strict home! In the day, children weren’t so catered to. It was perfectly acceptable to have parents leave the home and expect children to obey clearly set out rules. You have to understand, I was the second youngest. There were always older siblings there to enforce house rules. The thought that a visitor (and we were always expected to be polite to visitors in our home) coming in and causing such a chaotic uproar was horrifying. I hated the idea and the story too. Then there was “Horton hears a Whoo”. Stand up and defy authority because it’s the right thing to do, (do you think this could have had an effect on the reaction of teenagers in 1969?) Be protective of people who aren’t really in your life? My father was 101^st Airborne. This is what took him out of our lives for years at a time. Not my favorite bedtime story. Sorry; too close to my life. I identified much more with Charles Schultz. Charlie Brown was my soul mate; Snoopy, my hero; Lucy, my nemesis; Peppermint Patti? She was my competition. Hey, I was the little red-headed girl, literally. Ask me to write a new Charlie Brown story, and I’d be all over it; but I doubt with the same genius that is exhibited in the original. So, I’m passing on this one. And now that you have seen my childhood, you know where all my neurosis comes from.

HAWMC challenge: Prescribed

Today's challenge to think of a fake, but wacky prescription that my doctor would come up with to treat my condition. I want you to know that this is fake. No medical person in their right mind would ask you to try this. After I write this, I'm going to write about some of the real wacky prescriptions that I have been given.

I was at Dr. R's office today and he has an idea about what is causing my volatile blood pressures.  Was comparing my blood pressures from when my potassium and magnesium levels are stable to what they are when my potassium and magnesium levels are critically low. He thinks that my blood pressure and my long QT syndrome would be better controlled if I went off the beta blocker, diuretic and ACE inhibitor and instead took large doses of potassium and magnesium. We are going to give it a trial of one month. So for now no more toprol, spironolactone and lisinopril, instead I am taking 1200 mg of potassium and 800 mg of magnesium.

Now, after writing this I'm glad that I made the disclaimer above. Potassium levels are critical to proper muscle function, especially heart muscle. Sudden cardiac death can happen when levels are either too low or two high. Both very low levels and very high levels are medical emergencies that require hospitalization. No doctor worth his salt would risk causing torsades du pointes by taking me off my beta blocker, or sudden cardiac death by taking me off spironolactone and lisinopril, much less causing hyperkalemia by prescribing large doses of potassium. However, there was a doctor a few years ago, convinced that my diagnosis of long QT syndrome was an error who did take me off all three drugs. In a week my QTc had lengthened to over 600, and my blood pressure went up to 295/160. Taking me off my heart medications was a bad idea that put me at risk for a heart attack, stroke and TdP.  More recently, a doctor at another hospital decided that I would benefit from taking hydroclorthiazide to treat mild heart failure. The problem is that I am extremely sensitive to hydroclorthiazide. It causes me to lose potassium at an extreme rate and makes me dehydrate causing very low blood pressure. I have been told to never take it again. When I explained that to her, she said "Yes, but you are taking spironolactone. It should keep you from doing that." I decided it wasn't worth the argument and ignored her advice. I have learned the hard way that if the advice sounds wrong, it could well be wrong and I am the one who has to do what is best for me.

HAWMC Challenge: Write about someone you admire

It's easy for me to think of someone I admire, there are many of them. Mostly they are strong and compassionate people, and I seem to know a lot of them. The challenge is picking which one of them to write about. I've been contemplating this one almost from the beginning of the challenge. I decided that it would be good to write about one that you can get to know too.

I have honestly never met Dr. Kim Manning. I have only gotten to know her through her blog "Reflections of a Grady Doctor".

Dr. Manning practices medicine at Grady Memorial Hospital in Atlanta. Grady is the public hospital for Fulton and Dekalb counties, and like many public hospitals it is in a very rough area of town. My son used to work there as a paramedic in the emergency room and referred to the job as the gun and knife club.

Many doctors who write blogs do so with a sense of cynicism that is off putting. Sometimes I read their blogs and wonder why they bother to practice medicine. And I wonder what the overall impression their patients have of them is. But that doesn't describe Dr. Manning at all. She writes many posts about her patients and her students and what shines out is her love and her compassion for them. She treats them with empathy and respect, and that makes me admire her very much. She writes about her family and her friends with a humor and honesty that makes me feel as if I am sitting on her living room couch watching movies with them. And she writes about her faith and I can tell that this isn't a casual thing with her. She believes deeply.

Even though we live in the same city, I am unlikely to ever meet her. Still it makes me happy that there is a doctor like her, especially in a place like Grady.

HAWMC challenge: Your writing room.

Today we are suppose to describe the room that we write in. I don't really have one room that I write in. Currently I am parked on my bed with the evening news blaring in the background. But because I'm so distracted in this room, I rarely do any serious writing here.

I hang out at Starbucks a lot and many of my blog posts are penned there. In many ways, it is similar to my bedroom. There is always music playing and often, people talking loudly. I can be pretty distracted there.

My church is another favorite spot. The building was only opened in February, so it still has a feeling of strangeness to me. It was built with the idea in mind to make it a place where people feel welcomed to come and just hang out. And I'm sure that as we all become more accustomed with the building, it will feel as much like home as the white elephant that we were in for over 20 years. There is a corner beside the sanctuary that is out of site and has a comfortable chair in front of the main window. It also has an accessible outlet. It is one of my favorite places to write. This is where my Mindful writing post was written.

Then there are the odd places that I write. My ekphrasis post was written while I was waiting in the main waiting room of my cardiology office, parked in front of another window.

Most of my posts are written at work. My cube would be a cheerful comfortable place to write, but I'm an admin and most of my co-workers feel free to ignore the sign that I put up about taking my lunch hour. I don't want them to think that I'm shirking my work by trolling the web, so I only write in there when others are out of the office. Instead I go to the main staircases. The staircases on the end of the buildings are seldom used. People prefer the central circular staircases. But the end staircases are enclosed in glass and have a picturesque view of the 80 year old virgin forest that our building was built in. Another place that I like to go is to the rooftop garden. In the spring and fall it is a nice place to sit and write. But my favorite place to write is on the walking trails. The trails wind through the forest and near a creek that is on the property. There are benches placed periodically through the trail and they offer a nice place to be contemplative. Occasionally, people walk by, but not often, and I can get a sense of getting out and away from the stress of the office.

HAWMC challenge: Authors choice

I found this note on my keyboard after being away from my desk. I can't read the signature and I have no idea who left it for me. I have no clue what it is about. There is nothing to go by. I love the people where I work.

Second post today because this just bugged me.

The health and safety committee hosted a Cancer Nutrition lunch and learn today. Unfortunately Fortunately, only the members of the health and safety committee showed up for it. The lunch was only a light salad with barely any protein in it. I knew that I should have brought down  a packet of tuna. The speaker was a dietitian from the American Cancer Society, so she should have known better. Within the first two sentences of her presentation she stated "It has been proven that obesity causes cancers like breast, colon and pancreatic cancer." I wanted to interrupt her to set her straight, but I behaved myself.

First off, nothing has been proven to cause breast cancer other than the brca1 and brca2 genes. For the most part they don't know what causes one woman to get breast cancer and another to not. There are some things that put you more at risk, but none of these things have been proven to be the cause. The greatest risk factors are two things that you can't control, and they are being a woman over the age of 40. Being a woman over the age of 40 does not cause breast cancer, it puts you at a greater risk. Some other risk factors are having a history of breast cancer, having received radiation to the chest as a youth, starting your period before the age of 12, being in your 30's before you conceive your first child or never having children and being a heavy drinker of alcohol,  but none of these things cause breast cancer. They are only risk factors. Obesity is a risk factor for post-menopausal women who develop hormone sensitive breast cancer. But being overweight before menopause seems to have a protective effect. Also, women who were thin as a child have a greater risk of developing breast cancer. Obesity does not cause breast cancer, it is a risk factor in some populations of women. Furthermore, no studies so far have shown a substantial link between obesity and breast cancer. The two studies most cited, The Women's Initiative Study and the Nurse's Study, both failed to establish a clinically significant link between obesity and breast cancer, but the authors of the study in their opinion felt that a healthy lifestyle was protective against breast cancer.

Then, I was wondering if it is true that a protein found in most breast cancer cells, but only in lactating healthy women and one day may be vaccinated against, is it not logical to say that the protein is what is causing breast cancer?

It really bothered me that even someone from the American Cancer can't get that right. I am so tired of this "lifestyle disease" blame game. And since there is so little understanding about the causes of obesity and almost no long term successful treatment, wouldn't be nice if they would stop trying to scare everyone skinny.

HAWMC challenge: Your daily schedule

Today's challenge is to write a schedule of what a typical day looks like.

6:00 am - Alarm clock goes off.  I Hit snooze.
6:07 am- Alarm clock goes off. I slap it, but turn it off.
6:07 am - I reach for my meter and check my blood sugar.
6:10 am - I get out of the bed and get my clothes out of the closet.
6:13 am - I go to the bathroom.
6:15 am - I get into the shower.
6:30 am - I dry off and get dressed.
6:50 am - I go to the kitchen and take my pills.
7:00 am - I put two eggs, a yogurt an apple and a chicken breast or small piece of meat into my lunchbox with a cool pack.
7:05 am - I walk out the door.
7:10 - 8:25 am - I drive to work.
8:30 am - I arrive in my cube, boot up the computer and start whatever tasks I find waiting in my in-box.
9:30 - 9:50 am - I go to the cafeteria to eat breakfast with Donna,Tyree, Toni and Michael.
9:55 - 10:45 am - I'm back in my cube working on my projects.
10:45 - 11:00 am - I go up to the the front and sort the mail.
11:05 - 12:30 pm - I am back in my cube finishing up my morning projects
12:35 - 1:00 pm - I go to the cafeteria to eat lunch with Donna, Toni and Natalie.
1:00 - 1:30 pm - Donna and I walk on the trail on good days and walk the stairs on bad.
1:35 - 2:45 pm - I am back at my desk working on projects.
3:00 pm - I take the second dose of metformin.
3:05 - 3:25 I go down to the cafeteria and meet Ruth and Lucille for an afternoon snack.
3:30 - 3:45 pm - I go back up front to put away the afternoon mail.
3:50 - 5:30 pm - I finish my projects for the day.
5:35 pm - I go to the garage and head home.
6:15 pm - I pull off the road and go to Starbucks and blog or surf the web.
8:00 pm - I leave Starbucks and go home.
8:15 pm - I arrive at home, get the mail from the mailbox and kick the cats out of the house.
8:20 pm - I take the second dose of toprol and fish oil, and grab a light snack from the refrigerator.
8:30 pm - I go to my room and do any combination of  read, blog or watch TV.
11:00 pm - I go to the bathroom, brush my teeth, check my blood sugar and go to bed.
Rinse, repeat. Maybe I should take up sky-diving.

HAWMC challenge: Mindfulness

Today's challenge is to write with mindfulness, or just about a moment without trying to analyze it.

I am sitting outside in front of my church. It is a bright, warm spring day and the birds are out in force singing their hearts out. It is early in the spring for most of the bothersome flying pests so there are few of them. The carpenter bees, however are out, but they don't bother with me too much. The air is clean and scented with the wonderful pine smell that I have grown to love in this area. My church is on a side street so while I can hear the cars from nearby roads, few of them travel down this road. In the distance I hear a train whistle and know that the train will be by shortly. The houses in the quaint neighborhood across the street seem as if they are being prepared for auction. It is peaceful here today, my soul is happy to be here.

HAWMC challenge: Report This!

Today's challenge is to pretend that I am a reporter who has been given the story of a cure for my condition and report it. I was seriously considering passing on this one. I wasn't excited about it, and I have a few other things that I wanted to write about. Yesterday I was at the funeral of Ssgt. Gary Lee Nelson who was recently killed in action in Mosul, Iraq. I wanted to talk about that. Then, this morning while I was having lunch with my daughter, the waitress brought me coke instead of diet coke and walked off and never came back to check on us. The diabetic me wanted to blog a bit about that. When I sat down to write, I got the feeling that I should give the assignment a shot, just to say that I did it. I Googled breast cancer vaccine and I was shocked with what I found. A prevention and cure for breast cancer is not fiction. It is a fact and is happening right now. This bit of news has filled me with such hope.


“We believe that this vaccine will someday be used to prevent breast cancer in adult women in the same way that vaccines have prevented many childhood diseases. If it works in humans the way it works in mice, this will be monumental. We could eliminate breast cancer.”
Vincent Tuohy, PhD Principal investigator and immunologist at Cleveland Clinic’s Lerner Research Institute

Dr. Tuohy's vaccine not only prevented breast cancer in rats genetically prone to get breast cancer, but also destroyed tumors that were already existing.   The vaccine targets the protein α-lactalbumin that is present in the majority of breast cancers but only found in lactating women. The vaccine would be offered to women over 40, and to younger women who are at greater risk for breast cancer.  After giving the women the vaccine it is inadvisable for them to breastfeed, so young women who would want children and to breastfeed them would have to consider this.

Dr. Tuohy is absolutely correct. This is monumental. I am sorry that I broke the rules and didn't make up a cure.  However, I will choose a real cure over a fake one hands down.

HAWMC challenge: Write a story with a beginning, middle and end with two sentences

When Ssgt. Gary Lee Nelson was killed in Mosul, Iraq Westboro Baptist Church threatened to disrupt the funeral, but the town showed up to support the family and kept them away. The funeral was held with dignity and respect.

HAWMC challenge: Write a poem where every line is a misconception about your condition

This poem is about a hurtful conversation that I had with some loved ones while I was still being treated for breast cancer. To be fair, they weren't trying to be cruel. They were concerned about me. But their ideas were based on fear. If I had done something to cause this to happen to me, they could keep it from happening to them if they didn't do those things. Having multiple chronic diseases, I see that attitude a lot. Just the label "life style disease" attached to diseases like cancer, diabetes and heart disease implies that we are guilty of inflicting our own suffering.

Stupid Things My Family Said

You brought this on yourself you know
You must have done something to make your cancer grow.
It happened because you didn’t breastfeed.
What kind of life did you lead?
It was what you drank or what you ate.
You shouldn’t have gained all that weight.
The products you placed on your skin,
They surely now have done you in.
This wasn’t in our family tree
I’ll tell you now, it won’t happen to me.
But now that all your treatments are done
Pick up your life and just move on.

Off the subject but still urgent

There is a funeral for a fallen soldier at in Woodstock Georgia on Friday morning. Westboro Baptist Church plans to show up to protest at 10:45. We would like anyone in the vicinity of Trickum Rd. and Arnold Mill Road at 9:30 to line the roads and not allow them access to the grieving family. I personally have been in that category and can tell you it is excruciating without someone disrespecting the sacrifice that has been made. If you are in the area and can line the streets to keep these fanatics from their purpose, we would welcome your presence.

HAWMC challenge: Herbal supplements such as Ma haung, Bitter Orange, and Ephedra can significantly raise blood pressure.

Today we are supposed to open a book to any page. Take the first line that you see, that's the title of your post. I used the health and wellness guide from the company that I work with. Randomly opened it to page number 75, put my finger down on the page and read:

"Herbal supplements such as Ma haung, Bitter Orange, and Ephedra can significantly raise blood pressure."

Good choice for being so random. Almost every herbalist I have ever talked with points out that the substances they use are all natural and therefore don't have the side effects of pharmaceuticals. Arsenic and white oleander are all natural as well as psylicybin mushrooms, and they have some decidedly potent side effects. Just because something is grown in the ground rather than produced in a lab, doesn't make that substance safe, much less effective. We don't know the side effects of most herbs because they haven't gone through the testing process that pharmaceuticals have, and there is no reporting mechanism when side effects do arise in the population of people who are using them.

To me, these products are a double edged sword. One of the symptoms of Conn's syndrome is high blood pressure that does not respond well to medications. My adrenal glands overproduce the hormone aldosterone, and that production fluctuates by the amount of sodium, adrenaline and epinephrine that is in my blood. For that reason my blood pressure fluctuates wildly. Keeping it in range is tricky business. In the same day I have seen my blood pressure as low as 84/47 and as high as 165/118. Ma haung and ephedra act as adrenaline in the body, causing the fight or flight effect, and raising blood pressure. But the other side of the sword is that they also prolong the QT interval. An adrenaline rush, such as happens when you are startled by a loud noise, awakened by an alarm clock or during competitive sports is a trigger for the arrhythmic cascade that can cause a person with lqts to die suddenly.

In my head I can hear my sister saying "that's just you, not the rest of us". She is a bit of an ostrich when it comes to lqts. She couldn't be more wrong. These herbs can temporarily increase blood pressure in people who do not have essential hypertension. Long QT syndrome can be acquired. Let me walk you through how this happens. You've been taking an intermediately large dose of Zoloft when your doctor puts you on Lyrica for your fibromyalgia. You are also taking Merida to lose those extra pounds. Then you get a nasty sinus infection and your doctor prescribes a Z-pack and Sudaphed. What the doctor doesn't know is that you are also using Dieter's Tea everyday because it helps curb your appetite. And then there is the Saint John's Wart help you sleep. At this point you are taking six medications and herbs that prolong the QT interval. You are on your way to a lunch meeting and the sinus infection is dragging you down, so you decide to stop by the convenience store and pick up an energy drink that contains Ma haung, Bitter Orange and Ephedra. You drink that down making the total of nine substances prolonging the resting phase of your heart.  You are stopped at the red light making a left hand turn and you get the green arrow. The truck in the opposite lane sees the green arrow too, but mistakes it for having a green light and proceeds into the intersection almost t-boning you. Your heart with it's prolonged QT interval is racing and you are vulnerable to an arrhythmia that is potentially fatal. Think it doesn't happen? Have you ever heard of Anna Nichole Smith or Heath Ledger? It's actually a very common way that cocaine addicts die.

Most people, even doctors are unaware that there is a five page list of commonly prescribed medications that can prolong the QT interval or that the effect is cumulative. There is no warning on the products that they shouldn't be used with other QT prolonging substances and many of them are sold over the counter. What should you do? Follow this link to download the list. You can check to see what medications you are taking that are on the list. Then ask your doctor questions about the medications they prescribe. Make sure that all your doctors know about all the drugs and herbal products you are taking. And avoid over the counter diet and energy products. Keep your heart safe.

HAWMC challenge: Ekphrasis

Today's challenge is to choose an inspiring picture and free write about why that picture inspires you. My picture comes from the Commons on Flickr. It was taken in 1942, and is part of the public domain. This picture inspires me because I really love pathways. The more richly textured they are the better. Most of the really beautiful paths are paved in bricks, as this one is, and nicely landscaped. This path is exceptional. The way the sun warms part of the path and the trees shade other parts draws my eye and adds to the sense of serenity that first glance of this path brings about. But the pathway isn't as safe and appealing as I would like it to be. Looking closely you can see in the upper left hand corner a man walking on the path. Because of the angle of the camera and the curvature of the path, he almost appears to be standing off the path and in the trees. When I first saw him I startled a bit, as if I were really on the path and saw a man hiding off the path. The picture is powerful enough to cause me serenity and anxiety at once.

Seven years ago today, I was walking along my path of life, and a stranger, hiding off the path attacked me. Today is the day that I found the dimples and lumps that led to my diagnosis of breast cancer.

HAWMC challenge: Wikipedia revision

Today we are supposed to do a wiki edit of our condition in Wikipedia. Starting out I chose to do one on obstructive sleep apnea because I haven't written much about it and I feel that it high time for it to come out of the closet. But alas, the Wikipedia article seems fine. I couldn't find anything to add or edit. So, I left disappointed and vowed to talk about sleep apnea another day.

Knowing just what I'd like to change in the article about long QT syndrome, I went over to the page and snagged it.  It is this:

 "The risk for untreated LQTS patients having events (syncopes or cardiac arrest) can be predicted from their genotype (LQT1-8), gender and corrected QT interval.^[9]

• High risk (>50%)

QTc>500 msec LQT1 & LQT2 & LQT3 (males)

• Intermediate risk (30-50%)

QTc>500 msec LQT3 (females)
QTc<500 msec LQT2 (females) & LQT3

• Low risk (<30%)

QTc<500 msec LQT1 & LQT2 (males)"

I know you are just dying to hear why I want to change that. I don't really want to change it; I want to take it out all together. Why, because of the way that a doctors see that little bit of information . This is what has happened several times in the past. A doctor is frustrated with my medication restrictions and wants to convince me that I'm really not that much at risk if I take it. He will point out that my last QTc reported by my electrophysiologist is less than 500 msecs and since I have been tested and didn't prove positive for the 5 most common genes for LQTS, I am really not at risk. There are fallacies with this line of thinking. The first is that if the doctor examined the the above statistics they would not hide the fact that they are for untreated lqts. While my well treated lqts will register at 450, when I'm not on medication I've seen QTc's at 630. And while my genetic tests indicated that I was not positive for any of the known lqts genes, at the time there were only 7 known genes and the test was only 70% sensitive to them. That means that 30% of  the people who had the test either had lqts caused by genes that where not recognized yet, or that the tests either had a false negative or a false positive result.  Since I had the test five more genes have been recognized. One of them was only recognized in one person. I know this, my father had a medical record that showed a prolonged QT interval in 1976. He and my brother died of sudden cardiac death before they were 60 and I have been positively diagnosed with a prolonged resting phase of the heart. I have no delusions about the fact that certain medications, stress and strong emotions can kill me. I'm not going to risk taking a lqts prolonging drug for a sinus infection. Most of them clear up on their own. I took QT prolonging drugs to treat cancer. The chance of breast cancer killing me was muted by the threat of dying in my sleep. I wish that my doctors would understand this distinction.

HAWMC challenge: Post Secret

I'm pretty sure this is more information than you really wanted to know.

HAWMC challenge: Bloggers Choice

Well, I've made it through nine days of the challenge, and it's farther than I though I might get. For me, the hardest challenges are the poems. The challenge today is to write about any topic I choose.  And today I guess that should be Diabetes. It is a beautiful spring day and I spent a good portion of it at the Georgia World Congress Center at the American Diabetes Association Expo. I don't know why I like going to these things, I'm a nerd that way, but from what I see there are plenty of nerds like me. Actually I wanted to go to this one because I was only officially diagnosed with diabetes in November. I guess my doctor thinks that because we have been talking about diabetes for years, that I know all about it. I really don't. Type 2 diabetes is both simple and complex at the same time. It's true that there is a ton of web-based information out there. But it's also true that some of it is false and misleading. Take for instance the claim that type 2 diabetics can cure their diabetes if they will eat right, exercise every day and lose 10 percent of their body weight. It is stated everywhere on the web. I was talking to a diabetes educator today about this issue. It is simply not true. Once a person has diabetes, they are always going to be diabetic. I can control my blood sugar to the point that my levels are normal and I don't need the medication every day, but diabetes isn't going to go away. Fair enough I guess, but I wish that reputable sources would stop perpetuating that myth. There are a lot of  things that I don't understand. Like, since metformin is unlikely to cause blood sugar lows, and I'm not taking insulin or changing my medication schedule if my blood sugar is too high, then why do I need to use a glucose monitor? Is it really important? I know that I should ask my doctor that, but when I'm there, I'm not thinking about it. The expo was very helpful. I got a ton of information and got to talk to a lot of very knowledgeable people. They even sent me away with a bag of fruit and vegetables. Now I just need to start working on a list of questions to ask my doctor when I go in.

HAWMC challenge: Write a poem where every line is a health question

How many carbs does that candy bar have?
Why am I getting cramps in my calve?
Will my heart be damaged if my potassium's low?
What was it that made my cancer grow?
If it comes back, how will I know?

HAWMC Challenge day 7: Leave your condition a text or a voice mail

Ring, ring, ring, click.

"You have reached the voice mailbox of Breast Cancer. I am currently away on an extended leave of absence and have no scheduled date of return. However, I am checking my voice mail, so please leave a message at the beep."

Beeeep

"Hi BC, this is emmy. Long time no see, and I'm kind of liking it that way. I know it's heartless to break up with someone on an electronic device, but I don't think continuing a relationship with you is good for me. I need to just put you behind me and move on. So, I would really appreciate it if you would not try to contact me again. This is the part where I'm supposed to say that I wish you well and hope you find the right woman someday, but I think that we both understand that we wish each other's demise. So lets just call this over." Click.

HAWMC challenge: Why do you blog?

It's a good question and I'm sure that I have written a post about it in the last year, but I can't find it. I may have deleted it.

I started blogging in 1999 on Opendiary when my 20 year long marriage was breaking up. It wasn't a happy time in my family. I found myself the single mother of two angry teenage boys and a devastated five year old daughter. I needed a venue where I could vent my anger and frustrations without inflicting my pain on my children. So I wrote obsessively all of the feelings that I was experiencing. And it amazed me that I began on that blog to gain quite a few followers. There were a lot of people going through messy divorces, and we were gaining comfort by sharing the experience.

The focus of my blog began to change in the year 2000. I was still dealing with a messy divorce and the kids, but a lot of changes happened for me that year. I was becoming uncomfortable with the small non-profit corporation that I was working with. It just felt like something wasn't right there and I needed to make more money. I found a job in a Fortune 100 company that paid significantly more than what I was making and had wonderful benefits. It turns out that became a significant factor shortly after I started working there.

I was at my desk one afternoon when I received a call from my son's school. He was in AFJROTC practicing drill when he passed out and hit his head on the pavement. He was taken by ambulance to the local hospital. During that visit the ER doctor noticed some physical characteristics of my son's that she found alarming. He was tested and ruled out for Marfan's Syndrome. Then two weeks later my older son was playing soccer at college and collapsed on the field. His ER visit resulted in him wearing a holter monitor and with that he was diagnosed with Wolf Parkinsons White Syndrome. This lead to him having ablation surgery on his heart a few weeks later. Then strike three happened. With all the heart stuff going on in my family and the amount of stress that we'd all been under I decided that it would be a good idea to get a physical with a doctor that I hadn't seen before. My ex got the doctor and the chiropractor in the divorce. She noticed a abnormality on my EKG and sent it to a cardiologist to be read. I wasn't worried. I expected to be told that I also had WPW and would need an ablation.  Not really the case. The cardiologist diagnosed me with Long QT Syndrome. This is when my blog began morphing from a single mom blog to a patient blog. At the time, I had never heard of medical blogs. I don't think the term ePatient had even been coined yet. But finding out that I had a dangerous heart condition that could take my life at the next heart beat gave me plenty of fodder to blog about. These experiences also opened my eyes to a new possibility. Before we went through all of this I was oblivious to the amount of medical information that is on the web. A whole new source of information was shown to me, and the more I googled the more I had to blog about.

Then 9/11 happened. And my middle child joined the army. He had to wait until he was out of school to go to basic training, so I had a few months before his decision sank in. But I was switched to the wicked witch team at work and had more stress from my job than I knew one person could generate. To say that she was awful doesn't even begin to describe it. When Matt went into basic training the stress multiplied beyond anything that I could tolerate. It was the fall of 2002 and we were in Afganistan and seriously threatening Iraq. During this time I woke up every day throwing up. I cried at the drop of a hat. I would sit up rocking in bed every night, unable to sleep, and I blogged about it. Blogging was the only thing that gave me any comfort. I was in very bad shape, and the situation didn't get better. In early January, after basic and infantry training, Matt was assigned to the 101st Airborne. I am an 101st Airborne Army brat. I already knew that they are the biggest badasses the Army has. It didn't surprise me at all that President Bush dedicated their service to Iraq. And my teenager was right in the middle of it. I was in my car driving to work when I heard on the radio that the president had ordered all Americans out of Iraq. I pulled into a parking lot and rolled into a fetal position. I was there for hours.

The invasion was torturous for me. I had no where to go to get away from the constant barrage of news from Iraq. One day I picked up a magazine and the cover was a Paul Getty photograph of my son, dirty and sunburned, with a rack of bullets around his neck. I saw news casts of the 101st kneeling in formation in Najaf, and defending a bridge in Nasyria. I watched them lob bombs into a house in Mosul, and clean up the remains of two black hawks that had collided. On my birthday that year I received an email from my son. He said "First thing Mom, is that I'm alright." The email was to inform me that he'd driven over an IED. I was literally, physically sick and I thought that it was from the amount of stress that I was in. The only place that I had to vent the stress was my blog. People were reading my blog and telling me to get help. Where do you get help for that?

By the middle of October, I was so ill that I couldn't do anything. I was falling to sleep behind the wheel while I was driving. I couldn't endure a trip to the grocery store and had to sit down to rest. The most frightening thing was the amount of weight I had dropped without trying. I went from 235 pounds down to 166, which is still overweight. Everyone was telling me how great that was. Everyone, that is except for my friend Christine. She insisted that I needed to go to my doctor. I made the appointment and she did an complete physical, ran all kinds of tests including a mammogram, but didn't find anything. She said that I was too stressed and if I didn't find a way to deal with it I would need to be hospitalized. So I kept blogging. That is how I was dealing with the stress.

The holidays were so rough that I sent my daughter to her father's for her winter break. I thought that she had a better chance of having a good Christmas with him. I spent that time blogging. I wrote about everything and nothing hoping to find comfort, trying to find a way to hold myself together.

In January the 101st shrink wrapped their trucks and helicopters and started their move back toward Kuwait. I felt as if a mountain had been lifted off of me. I could breathe and laugh and eat and sleep again. But....something was still not right. I was still throwing up every morning. I had no energy, everything was a chore. I didn't want to do anything but stay in the bed. I kept thinking that if I could hold on long enough I would heal and start feeling better.

I stayed this way until April 12, 2004. While I was drying off from a shower I noticed dimpling in my left breast. The dimple led to the discovery of a large hard lump. I went that morning to my doctor who arranged for me to have a diagnostic mammogram and ultrasound on the 14th. The tests revealed six large tumors in my breast and a 3 centimeter tumor on a lymph node. Six months before these had not been there. I was sent directly across the street to a surgeon who specializes in breast care, where I had 20 biopsies done. The doctors told me that day that I had breast cancer. They told me that I would need multiple courses of chemotherapy followed by surgery and radiation. They told me that I would be so sick that I had to go on disability, I could  not work. What they didn't tell me is that they thought I might beat this thing. Cancer treatments consumed my life. Without work, I had nothing else to focus on. I blogged the entire experience. The blogging took on a more important roll for me at that time. It not only helped me cope with the experience, it helped me process the information that I was getting and record it so that I could review it later. My blog and my calendar were the two best tools that I had. And this is when my blog made the full transition from an everyday blog to a patient blog. And my Opendiary blog had scores of followers. But there was even more that I found in the blog world. I began to be aware that there was a thing called med-blogs. Bloggers who were in the medical profession and patients of all kinds. Their blogs fascinated me. It was helpful to know what they were thinking. It helped me learn ways to approach the many doctors that I was now having to deal with. It was also teaching me what behaviors I should simply just not tolerate.

In October of 2004 a hacker attacked Opendiary and deleted thousands of blogs. Unfortunately mine was one of the ones that was deleted and their efforts to retrieve it was unsuccessful. That and my growing dissatisfaction for Opendiary made me decide to change blogging platforms. Opendiary is a different kind of blogging community. It seemed to be made up mainly of teenagers. For that reason I was growing very sensitive about the information that I was putting out there. The society of social media and reality TV that we live in creates an acceptable environment for voyeurism. In many ways we are removing the curtains from our living rooms and allowing peeping toms into our thought lives. This is a double edge sword. In opening ourselves up to this vulnerability we create an openness that allows us to learn from other peoples experience. However, some people think that when we remove the wall of privacy, we also remove the boundary of respect. They are more than willing to offer harsh criticism and unwelcome and unsolicited advice in the form of comments. I came across this many times at Opendiary. It was a hurtful experience and I was in a very bad place to have to deal with it. I made the decision to leave Opendiary and move to Blogger.  This is where I jumped the shark as far as blogging was concerned. Blogger doesn't promote community as actively as Opendiary, and my blog here has attracted far fewer readers. I don't necessarily consider this a bad thing. It brings a welcome level of anonymity back to my blogging.

After I finished my cancer treatments, I returned to work and to the same supervisor who produced so much stress for me. But after I almost allowed her to kill me with the stress, I just didn't care what she did any more and I didn't mind telling her. She was eventually replaced with a wonderful supervisor and has left the company. But my health didn't ever return. Episodes of unexplained pain led to a diagnosis of Conn's Syndrome. The constant heartburn and frequent vomiting lead to a diagnosis of GERD. Constant neck pain lead to a diagnosis of Osteoarthritis. Frequent severe dehydration and dry, brittle skin, hair and nails led to a diagnosis of Hypothyroidism. Frequent testing has led to diagnosis' of  Hypercholesterolism, Hypertriglyceridema, Lymphedema, Diabetes and Severe Obstructive Sleep Apnea. Blogging about these conditions has helped me deal with my feelings about all of them. It helps to relieve my stress and reading other blogs helps me to learn how others cope with them and with ill health in general. That is why I blog.

HAWMC Challenge: Haiku

Long QT Haiku
My finicky heart
Fast or slow undetermined
Don't quiver or stop

Diabetes Haiku
Sugary sweetness
Cupcakes, cookies and candy
No more to be had

Breast Cancer Haiku
Baldness, sickness, pain
Fatigue beyond reasoning
More needles and pills

Stop cells, don't mutate
Cancer you stay in the past
Don't come back again

Hyperaldosteronism Haiku
Low potassium
Blood pressure is up again
Spironolactone

Hypothyroid Haiku
Dried out skin and nails
My hair is thinning again
T3, T4, TSH

Migraine Haiku
Broken glass flashing
Hammer pounding in my head
Motion makes me sick

HAWMC Challenge: Ludicrous Article

The HAWMC challenge today is to find a ludicrous article about your health condition and write about it. It doesn't seem like that should be much of a challenge. More snake oil is sold to cure cancer on the Internet than I could shake a stick at. And then when you add hypertension and diabetes in with that, it seems that I could do a Google search, close my eyes touch anywhere on the screen and choose the article that I'd like to use.  Actually, it was a little harder than that. I went to the websites of Dr. Andrew Weil and Dr. Joseph Mercola because they tend to sell a lot of half baked ideas. Seriously, if you ask me to buy your "special formula or product" I'm not going to put much stock in what you say. As I was reading their comments on breast cancer and hypertension, they  were generally just advocating for nutrition and exercise and not promising a miracle cure.

Then after giving up and going to Twitter to just mess around I was directed to this article about the psychological price of surviving cancer. Overall, it's a fairly decent article, but there were some parts of it that I found ridiculous.

The author, Ann MacDonald, introduces her subject and motivation by discussing her friend who is a two time breast cancer survivor. The friend that she is calling Terry has been NED (no evidence of disease) for eight years, and Miss MacDonald states:

"Terry (as I’ll call her) has been cancer free for eight years—long enough to be considered cured (generally defined as being in remission at least five years)."

This is actually the second sentence in the article. Ms. MacDonald is mistaken if she thinks her friend is cured of breast cancer. Breast cancer, unlike other cancers, can recur decades later, and since it can five years isn't considered a cure. Generally, breast cancer survivors are screened for recurrence every six months to every year for the rest of their lives. She then goes on to explain:

"But in no way is she “free” of cancer. Every abnormal blood test, every callback for another mammogram terrifies her so badly she can’t sleep until doctors rule out a recurrence."

On the surface I can see where that reaction to cancer tests can seem extreme to people who are not survivors. But it is actually very common in cancer survivors. I blogged about a similar reaction in this post about my last mammogram. To me, it doesn't seem crazy at all to have a heightened sense of anxiety about the possibility that we could be facing cancer again  After all our bodies have failed us already, we know it can happen again. And if we are in any way ambiguous about that fact, the American Cancer Society lets us know that one of the main risk factors for getting cancer is having an personal history of the disease. I don't see Terry as over-reacting, especially considering that she has had breast cancer twice.

The rest of the article list ways that cancer survivors "suffer" psychologically as the result of their cancer experiences. Among them are not being able to enjoy the life they have for fear, fear of recurrence and survivor guilt. They are valid concerns. I do fear a recurrence, especially when I see so many women in my support group who were diagnosed in earlier stages of the disease go on to fight the disease multiple times, and many of them have died. It saddens me, it shocks me and I always know that there but for the grace of God go I. Still, I don't see it as a form of PTSD, but more as a healthy respect.

HAWMC challenge: Yahoo Answers

I must admit that this is a challenge that I'm not totally excited about. Today I am told to write a question about my condition as if I were asking a question on Yahoo Answers and then answer it. To achieve this I had to do a little research and go to Yahoo Answers to find out what it is.  I have never been to the site before, an let me say I was underwhelmed. It seems that most of the questions posted on the site are regarding using the site itself. And it also seems like the average age of the questioners is around the age of 12. I don't think that I'll be hanging out around there much. The challenge description mentions permission to be silly with the question and/or answer but I think that I will pass on that too.

Can I be cured of congenital long QT syndrome?

Q: Several years ago I was diagnosed with congenital long QT syndrome after my father and brother both passed away from sudden cardiac death. Then last year I had a sleep study done and found out that I have severe obstructive sleep apnea. I have been using a CPAP machine since then. In November I was in the hospital for an unrelated condition. The cardiologist that saw me there looked at my ecg and said that I didn't have long QT syndrome and that I must have been misdiagnosed. Can obstructive sleep apnea cause a prolonged QT interval and will treating the sleep apnea cure the long QT syndrome?

A: Many conditions can cause a prolongation of the QT interval and obstuctive sleep apnea is one of them. However since you already have a diagnosis of long QT syndrome and a strong family history, it is important that you continue to be treated for the condition. Congenital long QT syndrome is cause by a genetic abnormality in your hearts electrical system. Treating other conditions that cause further prologation of the QT interval is extremely important. But treating everything that may prolong the QT interval will not make the genetic abnormality go away.

HAWMC Challenge: Word of the Day

HAWMC's challenge today is to go  to dictionary.com and write a post using the Word of the Day, and link that word to your condition. If you clicked on the link above today (April 2) you found the word unctuous.

Unctuous UNG-choo-us, adjective
1. Of the nature or quality of an unguent or ointment; fatty; oily; greasy.
2. Having a smooth, greasy feel, as certain minerals.
3. Insincerely or excessively suave or ingratiating in manner or speech; marked by a false or smug earnestness or agreeableness.

Talk about wanting to uncover my uglies. I tell you, I have come across unctuous behavior in so many ways as a many zebraed patient. But I really don't want to be so jaded as to dwell on or ruminate on the experience. I choose most of the time to just move on; put it behind me. I think the worst example that I have is of a doctor who was a partner of my primary care.

 After my treatment for cancer had finished I began having strange episodes of extreme generalized pain and anxiety. The first episode began around 2 am while I was asleep. I woke up in so much pain I could hardly move. I awakened my then 13 year old daughter and had her call a neighbor and 911. We were all terrified. At the hospital, they could tell that I was genuinely in pain as my blood pressure and heart rate were both elevated. But they kept me for three days on the basis that my potassium levels were at 2.2, well within the level capable of causing an arrhythmia. After they released me they referred me back to my primary care physician. Since she wasn't able to see me that week, I was scheduled with another doctor in the practice. I arrived at the appointment and waited in the waiting room for three hours, then I was taken back to the exam room and the nurse was extremely apologetic and told me that there had been an emergency, but that the doctor would be in to see me soon. I waited in there for another hour and was picking up my purse to leave when the doctor finally arrived in the room.  He was very apologetic and ingratiating about the wait and asked me to stay. Against my better judgment I decided to stay, but now I wish that I hadn't. I told him what had happened that week and why I was  there and he seemed to listen. Then he started the exam. Things were going as usual, with him looking in my eyes and ears and listening to my chest. But while he was adjusting the stethoscope he noticed my port-a-cath. He asked me what it was and I told him. Then he asked me why I had one. I explained that they decided to place one when I started chemotherapy. He then asked me why I was on chemotherapy. I was shocked. I stared at him for a long time wondering what I should say. And after a long pause asked him if he and even glanced over my chart. He hadn't. He was so unctuously apologetic, explaining again that there had been an emergency and he wanted to get in as soon as possible to see me. Again, my instinct was to get off of the table and leave. I should have. Instead, I took a deep breath and said that I understand the fact that at times the needs of others supersede my own. I wasn't complaining about the wait, but I was there now and in need of his professional attention and that I would appreciate it if he would give it to me. This kid (he couldn't have been 30 yet) was so smooth, I should have walked out on him, but I stayed. He assured me that he was there now and that I did have his attention. After the basic exam, you know; eyes, ears, throat, listen to the chest, he asked me if I'd ever had mono. Well yes, in college there was an outbreak and I'd gotten it. He then told me that mono was caused by the Epstein Barr virus and it was the same virus that caused chronic fatigue syndrome and fibromyalgia. He told me that was what was wrong with me. He was so smooth and greasy in his explanation. While he was explaining it I was imagining in my mind a middle aged women who was sick with an unexplained condition and desperate for something to go back to her friends and family to explain that she was really ill. And here was this idiot giving her unprovable labels for questionable diagnosis'.  I had just walked through the medical jungles of heart disease and cancer and he was trying this on me! I couldn't believe it. I looked him square in the eye and told him that he shouldn't embarrass either of us by writing that in my chart. Then I did finally get off the table, collect my purse and walk out the door. Unctuous behavior...oh yeah! I left that practice because of it. Never try to pat me on the head.

After the episodes of pain happened four more times, I noticed that the only constant thing was that every time my potassium levels were critically low.  I mentioned this to my new primary care physician, who referred me to Dr. C, my nephrologist. It took him about 5 minutes to figure out that I was suffering from Conn's Syndrome and order the tests to prove it. I'm on proper treatment for it now and the incidences of pain haven't happened again in six years. It's a medical zebra, and I don't fault the young doctor for not considering it. But to decide to just appease me without a real explanation of what is happening or a plan to make it not happen again (if that is possible) is not acceptable.

HAWMC

I have signed up for Health Activist Writers Month Challenge. While I don't consider myself on the professional level of Health Activist Writers, still the invite did say "We invite you to join us"...ummm ok. After seeing the subject list, I must say I'm a bit challenged. The challenge for today is to write an acoustic poem about your illness or just about the word Health.  Since I have many conditions that I write about, my flock of zebras, I have decided to write about the word Health.  Here's the poem:

Having lost you I seek to regain,
Everything, but it's not the same.
All the symptoms I didn't see,
Looking for other reasons that this would be.
Health and wealth have passed me by,
Though I would have them by my side.

Long QT Syndrome, Breast Cancer, Lymphedema, Hypertension, Conn's Syndrome, Severe Obstructive Sleep Apnea and Diabetes, to hit the highlights give me a wealth of conditions and diseases to draw from.  I know that to be successful I should focus on one, but I'm dealing with them all.  So here goes, one more time trying to do a post a day for an entire month...30 posts in 30 days.  We'll see.

Weight Loss Fail

I went back to the weight loss doctor tonight. As always they are happy with my progress, down another 1.5 pound from 2 weeks ago. I am not happy with it.  I want 1.5 pounds a week. They changed up my diet from Atkins on steroids to "Eat what you want as long as you don't go over 1500 calories in a day, and you have to have 70 grams of protein in there. Initially, I am afraid that the change will cause weight gain.  I feel myself being resistant to the change. Oh, and I have to log my diet on a web based appliance so that I can bring it in with me.  I see this one not lasting for months.  The appliance is difficult and no where near as accurate as I would have hoped. I am thinking at this point that I would prefer Atkins on steroids.