Friday, April 9, 2010

purple hat ladies

I don't know if this is strictly an american phenomenon or not. But there is a group of ladies that get together and are marked by the purple hats they wear. It is based on a poem where the writer declares that when they are old they will wear purple. They will be unique and quirky and to their degree, daring. These gals commemorate this thought by wearing purple hats and becoming conformists.

I have to wonder about this a bit. How much better would it have been if some one would have declared," When I am an old woman, I will stand up for the helpless, I will help to find a roof for the homeless, I will defend the underdog, I will speak up for what is right regardless of financial gain or loss. I will actually BELIEVE the best things in life aren't things, and I won't just put it on a plaque and place it prominently by my door".

But I don't think that would have become a popular mantra and it certainly doesn't improve with head gear. But when you are actually different, and don't require thirty other people to be different with you, then it's another matter.

God grant me the strength to be different.

louie

Thursday, April 8, 2010

Dr. visit

Well, another notch in the belt. Another Doctor visit behind us. These visits always leave me thinking that I really just don't know how to feel. Mac's regular oncologist is Dr. Hiatt. Dr. Hiatt used to be so good at giving us the big picture. He would tell us how the disease was working and what they were trying to accomplish, goals for each step of the process. He would tell me what to watch for. If this happens or if that happens or most importantly, if you have questions, call. We had been told that if all went well, they (Iowa City) would turn Mac back over to Dr. Hiatt two months after transplant. Transplant was last July 31.

He had a very good visit yesterday with Dr. Silverman, who we are fond of, and he is to go back in four weeks. I try to get additional information. While I know that Dr. Silverman is very smart, she doesn't give me the information that I crave. I always leave Iowa City not knowing if the ground I am standing on is solid or not.

Mac has GVH. GVH stands for graft versus host. The graft is the stem cells from bone marrow from the donor. These stem cells basically create a new immune system that attacks the cancer cells. In this case it is the leukemia cells. But since these cells don't know that they are no longer in their original body, they can perceive the whole body as a "foreigner" and attack it. The goal is to have a little GVH so you know that these new cells are also going after the cancer. You know it's working. You do not want so much that it is going after an organ, organs or the whole body. Most people get a patch of GVH on their skin. In Mac's case it is inside of his mouth. It seems to be limited to that location right now. We're okay with this because we have been told that a little GVH is a good thing. So, yesterday, when I asked how is this shaping up? Is he ready to start having his visits moved out further? Is there a timeframe for moving him back to his regular oncologist? Then we are told,"He has GVH. This is serious." WHY!!? Why am I not getting the same message each time we see a doctor? Why do I keep getting cryptic bits of information? Why is it that what I am told one day isn't the same information that I get on another? What is worse... how do I take care of my husband when I'm not being given the information to adequately evaluate what is happening with him? When do I need to call the doctor? When do I pack him up and take him to the emergency room?

I feel adrift. I hope I know enough. When Mac left the Dr. office yesterday, both the Physician's assistant and Dr. Silverman said he looked great. They wished all of their patients looked as good as he does. This information didn't cheer us up at all. After all, it is a stark contrast to "He has GVH. This is serious." Now I don't know if a little GVH is a good thing.

For four weeks at a time his life and well-being are my responsibility. I miss Dr. Hiatt. I miss Bridget, his nurse...Bridget, the wonder nurse. I hope that what I do to take care of him tomorrow, and the next day, and the next day, are the right things to do. I hope things get better. I hope..... I hope.... I don't know, I think I want a "do-over".

louie

Tuesday, April 6, 2010

RAGE

Sometimes I have rage. When I have rage, people assume that I am mad at God, or I'm mad because of this disease. I'm not. This shitty disease is just part of the gamble that comes with life. No one is exempt. Everyone carries their risk.

What makes me angry are the ones who kick you when your down, or who abuse their power because they can. One of my personal experiences has been with Clarke Electrical Co-op. They provide electricity to where we live. As a matter of fact we heat with electricity. The reason we heat with electricity is because we were told that you get a special rate if you heat with electricity. I believed them.

I went shopping for electrical heat sources, A couple of the kids went with me. Our criteria was how much space did this product take, price, and to our laymen's minds electrical usage. We went with an area heating system. When we had the house about done and winter was coming. I thought I'd better get on top of that and contacted Clarke Electrical. This is when I was told that I couldn't have the heating rate. I was told that I should have contacted the company before installing. I needing the heating source to go through a different box so they could meter it for the discount. And with the type of heat source we had I also had to get an electric hot water heater. I told them that I did not want an electric hot water heater. I liked my gas tankless that was actually efficient. I told them that the electric would eat up so much juice that I would probably lose the savings anyway. The company representative agreed.

Later, when a plumber was here checking out a pilot light, we mentioned our situation. He got kind of irritated. "They don't need to run that through a separate box", he told us, "There's this little donut gizmo that fits over the wire going to your heater and they can tell how much electricity you use. They're not giving you decent rate cause they can get out of it." He went on about the virtues and downfalls of electrical service in different service areas. Clarke electric came up short all the way around.

Later, I was talking to one of the women that worked in the Clarke electric office. I let her know I was mad about not getting the heating rate. She said I should get the heating rate. Yes, they COULD put the donutty gizmos on. Then she asked what kind of heating we had. I told her," In the wall, zoned"

"Oh, you're exempt"

"I'm exempt?"

"Yeah, we don't give heat deductions for that kind of system"

So here I am, trying to be the good little consumer. I try to not be excessive in my lifestyle. I try to not use more then my fair share, cause there is a big planet out there with a lot of people on it. I try to be responsible and because of that I pay $.30 per kilowatt hour instead of $.12. I don't like being manipulated. I don't like being lied to and I don't like being taken advantage of because someone else is holding all the cards.

So, this is what I am prophesying for the future. The grid is such an inefficient structure anyway. Ninety percent of the electricity created is just lost through the air on the grid. I believe that the use of the grid outside of metropolitan areas will soon be obsolete. It is far more efficient to have a stand alone system in the country rather then running wire and poles and burying wire and putting in transformers over long distances. There are some new developments just waiting there for people to grab up, like the special paint that can turn an entire buildings surface into a solar collector. The new window glass that is laced with a fine filament and every window can become a solar collector. They are on the verge of having electrical storage units that far surpass what we think of as "batteries". They just have to get it in production.

But in the meantime, I have the overwhelming desire to build a bunch of homemade wind turbines and run the juice back onto the grid. I read about it in MAKE magazine, issue 5. You see, when installing the electricity the lineman let me know that they don't like it when people feed back into the grid. That's all the excuse that I really need.....because, I HAVE RAGE.

louie

Monday, April 5, 2010

computers and bobcats

Today is bill day. I hate bill day. It's this huge, monolithic, evil force and it scares the bejesus out of me! Bill day happens when you are married to a teacher. There is that once a month paycheck that visits and you think, " Oh, we have money! We have money!" Then two hours later it's more like "Oh shit! We've got fifty dollars to make it through the month!" So, for close to twenty years, I have faced bill day. For close to twenty years, I have faced once a month nausea and heart palpitations.... then I count out my change and I buy a lottery ticket.

Bill day has also become the bar by which I measure other things. Does this create as much stress as bill day? For instance, going to Iowa City to the Dr... not a bill day. Dinner with the parents.... bill day.

Then as I sit with my daughter and she is explaining posting pictures within text while on the computer, it begins. In my head, I'm thinking, "I swear to God, she is speaking latin again!" Then the stomach starts doing some interesting moves. I feel like I am bruising a bit because her words are bouncing off my head with some force now. I see her lips are moving! but there aren't any words that are useful coming out! I need words so I can take notes! I need useful words. I need her to say, " Go here and press this button and everything will be okay" But that isn't happening!! Now the picture won't even work for her! I have a computer curse and I can tell that it is starting to rub off on her as well. Son in law, Micah comes over to help. They do something! I don't know what's happening but the screen is replaced with streams of gibberish and intermittently there are symbols, just to help the gibberish along. Micah says to just go in and place the something-something into the code somewhere-somewhere. CODE!! IT'S IN CODE! Your only suppose to break codes with your Little Orphan Annie de-coder rings, or if it applies, enemy messages during time of war! We could break something!! I feel like we are behind the curtain and only the wizard is suppose to be behind the curtain. We're doomed! Nothing good is going to come of this.....BILL DAY, BILL DAY, BILL DAY!!!

Then in comparison, there was the day I had walked down the drive and across the road to release a mouse from a live trap. Tip the trap and let the door fall open. Knock the little vermin out and I look up. I stand there in the middle of a "B" surface road in my crocs and jammies knowing that I can't run. I remind myself that in this situation, I shouldn't run. Because just a hundred feet away there was either the largest bobcat that I have ever seen or a juvenile mountain lion. My first thought was that I should have tossed him the damn mouse. We both just stood there looking each other over. The cat just seemed too big to be a bobcat, but the way he was standing, I could not see a long mountain lion tail. He had two balls of white on the face like mountain lion cheeks and there were no ear tufts. I knew that there was a bobcat around. I had seen tracks a number of times. I also knew that the neighbor had spotted a mountain lion the previous year, but he had thought it was just moving through. Boy! It looked big for a bobcat!! I didn't want to die in the middle of a "B" surface road in my jammies!! That was when I remembered a story that I had read about an american Indian detective and in the Indian way, I addressed the animal, "Little Brother, I have taken this place for my home. I have ponies and I will have other animals in my care. Please don't bother them. If you will leave me and mine alone then I will leave you and your family alone." Then we stood there just a moment longer and the cat turned and trotted into the woods on the other side of the road. I turned and slowly walked up the very, very long drive. Stopping a couple of times to look behind me. I opened the door and said to Mac, " You will never guess what just happened to me!..."..NOT A BILL DAY!

louie

Saturday, April 3, 2010

Evelyn's here!!

One year old grand daughter Evelyn is here. So, for a couple of days, my priorities re-organize. It's not exactly marching to the beat of another drummer, it's more like dancing to the tune of the Playskool softy serpent thingy. Evelyn likes to dance. She dances like a sumo wrestler. She has a charm and grace that is unmatched.

Speaking of grace... she has an incredible move that defies description. I refer to it as her monkey butt turn. She is neither up nor down but it gets her spun around. She is so deft at this move and it so natural to her. She has no clue as to why I am laughing so hard.

My house is cleaner because of Evelyn. She cannot walk past the broom and dustpan with out picking up the dustpan and bringing it to me. Then she refuses to be dissuaded from finding some dirt and sweeping it up and tossing it out the door. Okay, it's not that hard to find something to sweep up at my house. Kind of makes me look forward to when she is old enough to be polite about such things.

Sometimes she is just so happy that she has to stop what she is doing to clap her hands, then throw them in the air and to yell "Yeah"! Everybody should be so happy .... at least sometimes.

Apparently, iPod earbuds feel neat on a person's tongue. I will take her word for it. It's one Evelyn thing I won't be trying myself. Oh, and the monkey butt move, I won't be trying that one either. But for now, for these few days, I'll forget the to-do list and Evelyn and I will dance to the beat of a different softy serpent thingy.

Monday, we are back to normal. (sigh)

louie

Friday, April 2, 2010

hidden treasures

While doing my little woodsy cleaning I found a perfect little spot for family gatherings.... well, that's how I hope it works out. There is a spot that comes down out of the hay field then into the trees. There is a little trail that drops down to another tier of ground. This spot is fairly open. It is a natural location for a fire ring and some stumps for seats. Then it drops down again. This last drop is a sand bar. Sometimes after a rain the water tears right through, but most of the time it ranges from dry to a couple of inches of water.

The whole time I was working on cleaning up an adjacent area of woods, I kept watching the beach area. That was already how I was viewing it..."the beach" It was the perfect too shallow to drown, soft and sandy, hot dog roasting, happy place for my family. Of course, there is so much that needs to be done, but I could still see everything play out in my head like a movie. Kids sitting around on some home styled adirondack chairs, some cheesy tiki torches. The grand kids playing in the sand and running and splashing in the water.

Just days ago there was nothing but thorny undergrowth. It hasn't taken much uncovering to find so many perfect hidden treasures. I can't wait until I am ready for everyone to see them.

louie

Thursday, April 1, 2010

to sleep, perchance to dream

Sleep and I have had a difficult year.... well, almost a year. Part has been stress. Part has been full moons streaming light through the window. Part has been vomiting.

Sleeping as a "guest" in a hospital is as difficult as sleeping as a patient. You get woke up for midnight and four o'clock vitals. You get to hear the neighbors tv when they have insomnia. There's the little alarms when someone falls down in the bathroom, and you get to experience all this with out the crackly comfort of the plastic coated hospital mattress.

When Methodist in Des Moines remodeled and went to a slide out bench to bed I was ecstatic!! No more bar in my back...HOT DOG!!, but there were still other predators to my ability to sleep. And here I have to give a shout out to Kayla the night nurse. She was one of our many godsends. Some nights when Mac couldn't sleep she would slip in and they would visit. When Kayla was in the room, I could sleep. I knew I was just turning my watch over to the other guard dog and if Kayla were there everything would be okay.

Going to Iowa City for the bone marrow transplant and then later the liver complication was totally different. They tout themselves as being family friendly. They are not. At least on the seventh floor cancer ward they are not. Several occasions I stopped nurses from giving medications that Mac was allergic to. So that meant don't sleep when it is time for medications. Always ask what they are giving. Many didn't like that. Some would just say, "I know what I'm doing" So then, it was necessary to keep watch because you didn't know what he had taken. It became the norm to sleep for two hour increments.

Then we came home. Coming home is always culture shock. With culture shock comes not a whole lot of sleep! Slowly the sleep got better but many nights were spent watching the moon's path trail across my window. Even though things got better it was as if that Iowa City recliner was permanently embedded into my psyche. Even the best nights had a wake up between 1-2 in the morning and again between 3-5.

But the last two nights I have had my own little miracle. i have worked clearing some brush during the day. I would start my process with building a fire and raking out an area. Whacking down everything that didn't rake up. Picking up old dead wood and burning that. I dare say that I overdid. Both days I could barely breath. My back hurt so badly that sitting down or standing up took some planning and a bit of courage. The good part was that I went to bed and I SLEPT! There's was no one o'clock wake up. There was no three o'clock wake up and when I woke up I actually felt awake! I was alert and the brain was in the totally upright working position, ready to go! It was so different. It was like some little part in me had gotten to heal up a little.

I just feel so much better!

louie