Wednesday, September 10, 2014

And This Is My Body

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

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

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

Friday, September 5, 2014

Long Slow Walk Around the Same Old Block

Last year my nephrologist retired. If you have been reading here for a while you will remember that I kind of freaked out about that. That lead to a short stent with one of his associates. I really liked her, but after Dr. Cn left the
atmosphere of the
office changed dramatically. I kept getting the feeling from the front office staff that the fact that I stayed was an imposition. They just got increasingly snippy and rude. I had enough. Besides that, everything indicated that what I have is not so much a kidney problem, but an endocrine problem. So I found an endocrinologist hoping that fresh eyes and fresh perspectives would lead to a different approach. One of the first things she did was prescribe a 4th blood pressure medication that finally got my blood pressure under control, but left me with other problems. The medication has a lot of side effects and I seem vulnerable to most of them. She also felt that the diagnosis was wrong and that a nodule on my left adrenal gland was secreting cortisol causing a condition called Cushing's. You might remember that I was pretty freaked out about that too. She did one test for it that came back negative and gave up on the diagnosis. She must have thought  that it was a long shot because from what I've read the condition is hard to diagnose and it usually takes several tests to rule it out. She sent me back to Nephrology.

The new guy seems okay. He's the only one who seems to cover the bases and test for everything in one test. But during these tests, my body has seemed to want to be the 2 year old whose fever breaks the minute he walks into the pediatrician's office. Electrolytes that haven't been stable in 10 years finally decided to be perfect. The tests themselves weren't perfect. They are strongly suggestive of primary hyperaldosteronism, which is the diagnosis I've had for the past 9 years. But now we know that it is possibly caused by a thickening of my left adrenal gland. So the treatment plan...the same as the last 9 years. My electrolytes are playing nice for now and I should just suck up the nasty side effects of the fourth blood pressure medication. Wait for signs of worsening kidney and heart failure and then we may consider surgery.

Is it just me? Does this sound like an idiot plan to anyone else? I don't even know where to go from here. I have been circling this drain for far too long.

Friday, August 29, 2014

Jack's Art

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Sorry that I've been neglecting you again. I've been spending a lot of time with my breast cancer support group sisters again. We have lost another from our ranks, but no one seems to remember who she is. Her husband emailed one of the more vocal members of the group to let her know that she died of medical conditions caused by her treatment for breast cancer. I have been brooding over a post about it, but it won't be this one. This is just in way of an explanation and an apology.

Jack sent me a thank you note for the birthday gift. Actually it is a  thank you for part of the birthday present that I gave him. He had been wishing for a hoot (owl) that he could take to bed with him and hug all night. We don't know where he gets these things. Jack has a mind of his own. Afraid that he'd get several stuffed owls, I not only gave  him the owl, but I included a board game and a Captain America lunch box. Not only had Jack not gotten one from anyone else, but he loved the one I chose for him. Personally, I found it to be a bit unnerving and was glad to get those spooky eyes out of my apartment. Jack pushed aside the game and lunch box and apparently the hoot by itself would probably have been enough. I don't remember what his other grandparents got him, but it is big and expensive and no doubt Jack will be enjoying it for years. They are getting him a baby grand for Christmas. I will probably get him a robotic Lego set or an electrical kit. He seems to be leaning toward a scientific mindset. but like all children, Jack ended up playing with the box his gift came in. He's still a child after all.

I put the note up in my cube this morning beside the first picture that Jack ever drew for me. The first picture probably looks lie a green blob to you. But after staring at it I realized that it was a picture of a game that we played when he was a toddler. He had a tree in his yard that he liked to play chase  around to be caught and lifted high into the air. He ran me ragged playing that game. So the blob to the left is me lifting Jack up in the air and the blob on the right is a very out of proportion tree. I noticed when the two pictures are very similar. Jack drew the first picture before he was 3. But at 6 he has the same looping technique that he used when he was a toddler to color both pictures. He doesn't really enjoy coloring or crafts for that matter. but it will be interesting to see as he ages if the technique continues, and if it will get more sophisticated.

On the back side of the letter he drew a picture of his hoot. I wish I could hang it for people to see. I think it's adorable...all but those spooky eyes.

I wonder if his other grandparents are going to get a picture of a baby grand after Christmas...

Saturday, August 16, 2014

It's not fall yet

It's still summer. Ordinarily I would be complaining about the heat. Today the high was 86. You'd think that we were in Hawaii... But, the geese are already forming into V's. This is not a good sign. We put a lot of notoriety on ground hogs in the spring, but the true sign of fall is geese. They usually start going into formation in late September or early October. The sign of a mild winter is for them to begin their formations around Thanksgiving. Last year they flocked in July. Remember Snowcalypse Atlanta? I'm glad that I have snow chains.

But it's not just the geese. This morning I woke up noon and it felt like early fall outside. there were dead leaves on the ground. And yes, I did see a V of geese fly by. I have spent many a birthday with temperatures approaching 100 degrees.

My birthday is Friday and I don't expect it to be so very hot. But I'm not going to be able to take it off work. Monday morning has turned out to be a bear. I need to do another 24 hour urine test tomorrow. Which means that I need to turn it in on Monday morning and have a blood test. Last time, it took me an hour to turn it in. After that I need to be a few miles away to have my arm measured for lymphedema. That appointment is at 10:30 and will take about 40 minutes. After that I need to be about 4 miles away to have my teeth cleaned. I will make it to work around 12:00. I will need the rest of the week to make up the time.

Today I named my new car. It looks like a storm trooper, so I have decided on Stormy. I like Yoda too, but Stormy is a natural. I have decided not to tell my friend at work, Stormy. I also washed it and got an oil change and emissions test. I also found out that I will be able to purchase new tires for about half of what I was afraid that would be needed. It will be a while before I need new tires, but I was lamenting the price. The car wash showed me the problem with the radio and it was an $8 fix. All I needed was a new antenna. I could even install it myself. It works great. Suddenly the truck feels like mine. I can't explain it.

Thursday, August 14, 2014

35 Years

This is what I have been doing for the past 35 years. My oldest son turns 35 today.
Happy Birthday Tim!

Monday, August 11, 2014

Tears of a Clown

Sometimes people hide the deepest pain in humor. Good Night Robin Williams. 
The world will miss you in all of your vulnerability.

Sunday, August 10, 2014

Transportation Instability

I had been driving a 2002 Chevy Impala for the past several years. It was a great car, but last year around this time it began having problems. After spending $1600 on repairs, the car died anyway. I was sad because this happened while I was trying to move into a better living situation. The area that I live in doesn't have public transportation and I work 24 miles away. Fortunately for me I carpool a lot and I have friends in the neighborhood who are more than happy for me to ride along with them. Plus, I have the most wonderful landlords ever who have 2 extra cars. But Still I have been counting on the charity of good people to be able to get to all the places that I have needed to be. Over the past few weeks that has been harder to do, I ended up renting a car.

My son has been driving a 1998 Mercury Mountaineer sense 2010. It is a good car. But it came to pass that he inherited a newer, smaller, less expensive to travel in and easier to handle for a person with rheumatoid arthritis car from his wife's grandmother. She isn't dead yet, but she understands that it is time for her to stop driving and live in a place where she can receive the support she needs. He would also like to build a fence around the back of his house so that his son will be free to go outside independently of having parents who can helicopter. He sold the Mountaineer to me for the price of the fence. The crazy thing is that the Impala and the Mountaineer get roughly the same gas mileage, which unfortunately isn't good. Still, I can get the price of gas down by carpooling and Kroger fuel points (discounts on gas for shopping at Kroger grocery stores.)

I can't say that I love the new car, but I am very grateful that I have an answer to my transportation instability while providing my grandson with independence.  I can't say that I hate the car. It has a lot of possibilities. It is just that I will almost never use anything other than the driver's seat. Still,  in the winter this truck has 4 wheel drive. It also came with snow chains. Even if UPS decides not to close during weather emergencies this winter, I will not be afraid to drive to work. I know nothing about snow chains, but I'm willing to bet that the best landlord ever does. He's a former military do it your selfer. The geese are already forming Vs this year. They don't usually do that until the end of September. The winter will be cold and snowy. I will be ready for it.

Thanks Tim and Jack for my transportation stability. It really feels good that after a year I am no longer worried about whether I can get where I need to be.

Saturday, August 9, 2014

The Week

From the roof of Tin Lizzy's
Oakland Cemetery
My week started here. I had slept through church. I woke up hungry and missing Mollie. Missing all my kids to be exact. I looked around and decided that there was nothing keeping me from taking a trip to the city to see her. She was at work, I had a captive audience. She was actually very happy to see me, and all her co-workers came up and introduced themselves. Of course, I got the family discount for my meal, but tipped my daughter for the full price of the meal. That's real important. If you get a discount meal, the discount comes from the restaurant, not the server. The tip is the server's only source of income. The $2.15 that they get paid from the restaurant all goes to taxes. An acceptable tip is 20% of the tab, 15% for sub-optimal service. The workman is worthy of his hire.

Later that evening, I can't remember why I went over to Mollie's new place. It's beautiful. It's in a quiet neighborhood. She has a deck and a fenced back yard. Her room mate grooms, boards and trains dogs. The room mate has a 16 month old child who lives there part time, and part time with the paternal grandparents. The room mate is thrilled to have found someone who loves both children and dogs. She commented to me that she had never seen anyone outside of her family sit down on the floor and play with her daughter until Mollie. It doesn't surprise me.

George has stopped barking when I come to the door. I am told that now he runs to the door expectantly and paces until someone lets me in. The barking was helpful.

After getting home late on Sunday night, I had to get up early on Monday to make it two appointments that I wrote about in the preceding post. Tuesday morning brought a surprise meeting that I thought had been was not. I stayed in the meeting for about 15 minutes. None of the speakers stood at the podium or directly in the front of the room where there were active mics. Instead they chose to stand to the side of the podium and speak in voices that did not carry. I finally decided that if they didn't wish to speak in a manner that could be heard, what they had to say was not worth my attention, or the time my company was paying for. I, like a few others, went back to my desk and did meaningful work.

On Tuesday night I realized that I am still not feeling much better than when I began the B12 shots. What's worse, I can tell from the paleness of my skin and the way I am feeling that I am still anemic. I went online to learn the shelf life of cyanocobalamin. It turns out to be 3 months after it's been opened and unopened by the date on the bottle. I had never noticed any dates on the bottles. Ummm...Uh Ohh.... I had to throw away almost 4 years worth of the stuff...that I had paid for! I also had to call Dr. R for a new prescription. I'm sure that I'm the joke of the office now. "There's an elephant in the room, who knew?" 

Mean while, my wonderful landlords are filling my coffers with fresh vegetables.

After years of renting from a slum lord I feel like I have left purgatory and moved into heaven. I may never move out of here. I feel sad that I couldn't provide somewhere this safe and welcoming when Mollie was a child. But we are both in good places now.

On Wednesday evening Tim was supposed to pick me up and drive me to Alabama where I could pick up the truck that I am buying from him. I the evening while leaving work, I called him to enquirer about when I could expect him. Turns out that he wasn't planning to leave until 6:30 pm central time, which is 7:00 pm eastern time. That would put him getting here at 10:00 pm. We would  then travel three more hours to Auburn and get there at 12:00 their time and 1:00 my time. I would have to travel back three hours that would put me getting home at 4:00 am. Did I mention that I'd had a nightmare the night before that woke me up at 2:30 and I couldn't get back to sleep? On top of all of that he was having a RA flair. Folks, this isn't happening. We both called it off and decided to do a re-do on Sunday. Fine, but I have to get someone to cover lighting and presentation at church. Not a big deal. 

Not having any obligation I made dinner plans with Mollie and Caleb for Saturday night. I haven't really seen them together as a couple since their break-up last year. On Thursday Tim called and told me that he made plans with me not knowing that Jenn had made previous plans for Sunday. He wanted to know if I could change to Saturday. Actually, Saturday works out better for me. I can pick up the truck (not a pun) and be back in plenty of time to have dinner with Mollie and Caleb. And while I will have a nice amount of time with Tim, I will be cutting Jack's time short. I hate that. 

So, I hadn't heard back from the pharmacist regarding the new prescription for the cyanocobalamin by this afternoon so I called. My head exploded! I didn't yell or rant at the pharmacist. It isn't his fault. There is a shortage of cyanocobalamin because it has become so popular among alternative health activists. What? They can get all the B12 that they need from eating an egg,  a piece of chicken or even from just drinking a glass of milk. But I can't metabolize it from those sources any more and they are putting my life in danger. I can die a nasty death because they need an energy boost? For the love of all things Holy!!! I survived stage 3 breast cancer and suffer because a hippy wants a fix? For the love of all things Holy. My head exploded...again.