Too Damn Hot!

If you ask yourself how hot is too hot, then the answer is 95 degrees fahrenheit.   That is 95 without humidity.  With humidity, the answer would be 88 degrees.  I have had too much time to think about this.  It seems like it has been hot for far too long and it seems that the weather is going to hold for now.  The heatwave will continue.  The worse of it is that the heat is keeping us indoors.  It couldn't have come at a worse time.  Mac had begun to go out.  Between the medications and the chemo, he had become very sun sensitive, but this summer he had been going out.  He had started doing things, puttering about in the yard.  The little farm had finally started to take hold of him.  I thought that maybe, all of the damage to his spirit caused by the leukemia and the medical treatment, would begin to heal.  But now we are having to take refuge from the heat.  Both of us longing to be outside... both of us wanting to dig in the soil and to build things.  But we are stuck in the house, avoiding the heat and getting cranky.

My less then stellar attitude at this point, makes me wonder about next year , and the year after that.  I think about  global warming.  Wonder if we are seeing the beginning of  our self induced apocalypse.  I want to plant as many trees and shrubs this next spring as I can manage.  I wonder if they will just burn up in the possible heat and drought, or maybe, just maybe, I will be doing something important to avert what seems to be an inescapable future.  I think I am the perfect person to face such problems.  Realistic enough to acknowledge that it exists, but optimistic enough to believe I can make a change.  Stupid enough to believe that I can even influence some other people to also put forth an effort to create a better world.  So, are you all listening?  Plant something!

I'm actually stupid enough to think I would like to make a double order of trees and shrubs from the Department of Natural Resources next spring.  I don't know how I would manage.  That would be a thousand trees and shrubs.  That would be a lot of work.  A lot of money.  Probably around four to five hundred dollars worth of planting material.   But wouldn't it be so incredibly amazing if I could pull it off?!    Makes me feel jazzed just to think about it.

Then I think about my physical limitations... then I get a bit depressed.  All  in all, I think too much.  I want to be outside.  I'm tired of being cooped up in the house!  Too many mood swings!  Too damn hot!  There is nothing for me to do but to go make pancakes for breakfast.  Pancakes always make a person feel better.  Pancakes!  food for the apocalypse!... or possibly, hopefully, not.

Louie

Ambassador

I have applied to be a Parelli Ambassador. I may not be far enough along in my horsemanship to earn that position, but that's okay. I would understand it and that would be fair. But I really, really hope I do get it.

Every spring I say, "This will be the year I accomplish....." First year, was to get some more of the finishing done on the house. I did get more done, but not all of it. Second year, was the stem cell transplant when the leukemia came back for Mac. Then there was the blur of time. I don't remember how long it even went on, so it is just "The Aftermath". Third year, I think, was trying to get ahead on the fencing and land development. This year needs to be about the horses and, hopefully, farm stuff that makes money. The year where all of the loose ends come together. This will be the year of my passions.

If I get to be a Parelli Ambassador, then I hope it will keep my mind focused on where it should be focused. A reminder. I haven't got another Parelli student close by that I can have horse days with, Someone to supply the support and focus, so I hope the working as an Ambassador will fill that role.... and create some Parelli friends in the area as well.

Sometimes I chide myself for being an old broad, with more then a few dings in the fender, chasing after my dreams and life goals like a twenty year old. I suppose on one hand it makes me a ridiculous person. But on the other hand, if I weren't chasing my goals, I would just be an old broad...... with more then a few dings in the fender. It would be a sin to die without trying. I have to try.

Louie

Today

Today I have to go to town. I need to go and pick up this month's groceries and will also need to get Mac's prescriptions filled for the month. I need to buy dog food too. Should probably put a little gas in the truck. I know that by the time I get home I will have spent around two hundred dollars. This makes me very stressed and on occasion, ill.

Today, this post, is my three hundredth post. Who knew I had so much gas!? That's a rhetorical question... don't answer it.

Since I started writing this blog, my rage level has dropped somewhat. Confrontation with the right kinds of people still send me through the roof. I can't blow things off like I used to. However, fears of Mac dying have diminished. The farther away from the doctors, the better I feel.

I'm not so far along on the little farm as I had hoped.... especially when it comes to fences. Fences and sheds are the back bone of a farm. You just HAVE to have them to get anything done. I still don't have a round pen, or a chicken coop, or the garden laid out the way I would like.

Too much takes either money, or physical strength or proper tools. I find myself lacking.

But we have hung on. We are stronger. The land is better. The weeds are down and the grass is thicker. We have started at clearing woods. Slowly, slowly we make a difference.

Today the high will be around 72 and last week it was in the 90's. We had an over night low in the low 40s. Today before I go to town, I'll try to work on digging post holes. Where there is life, there is hope. I really hope to get some fence in!

Today.... a lot could happen today.

Louie

Me, Myself and I

The dynamics of our family changed somewhat when Mac was diagnosed with leukemia. His original diagnosis was over five years ago. Recurrence, a bit over two years ago, then the stem cell transplant, two years ago. Venal occlusion of the liver was a year and a half ago. Graft vs Host is still current.

We all take care of Mac. The girls do an excellent job of going out of their way to do the things that make him happy. Doctors have taken care of him. Nurses have taken care of him. Anyone who has ever heard that he has had leukemia tries to be positive and nurturing.

I'm thinking that there are so many people taking care of him that maybe it wouldn't be noticed if I took some time and took care of myself a bit. I'm needing something more then a nap and a hot bath. No one else can. It's up to me

I know a lot of people just don't get it, but nothing brings my strength back to me better then my horses. Precious little makes me as happy. They transport me out of my troubles. So... I am putting myself and my horses in the top spot for a little bit. Just the thought of that makes me inwardly cringe.... makes me feel guilty. But I feel myself slipping away. Yet the chance of my own redemption , as it were, is trotting across the ground, back there, now.

Nobody takes care of the caregiver. So, I need to give it a try.

Louie

Motivation.....what motivation?!

It seems that every time I get that much needed motivation then my life has to unravel a bit. At least, far enough that the motivation is lost. That's the way it felt after the Dave Ells clinic. It was one Eureka!! moment after another. I could see why the Parelli program unrolled the way it did. Thought I could even see the steps for the continuation of development. I felt so jazzed! then comes the emotional battering of a doctor visit. I know, I know.... a doctor visit should just be a doctor visit. Mac had only one more visit to go to be past his *magic* three year mark when they found that his leukemia had recurred. So a doctor visit for us is more of an immersion in angst. Plus we have had the general busyness of our two and a half year old grand daughter, Evelyn.

Typically, my hurdles have been enough to quell any motivation.

I think the heat wave may be over now and I think I have my big girl panties are cinched up just right. Mac is better. I possibly have two quilt orders. It rained pretty good yesterday so might be able to get out there and start digging post holes. Things could be just fine.

We could do this... really! I still have my motivation. I'm still pondering over everything that I have learned recently. I've learned new ways to do stuff. Not just horses but lots of farm organization methods. Brains are so full that I keep getting pressure pain in the right frontal lobe.

As long as I have my motivation....I can do this.

Louie

We're back

I am exhausted. Nothing wears you to the bone like scary doctor visits compounded with six hours worth of driving. However it was a day of small miracles. First, this time there were actually two mistakes made by the med history program. Kind of obvious it isn't me. So they added back in the drug that had been somehow dropped out in cyberspace. The other drug that keeps resetting to a different dosage they decided to just leave and told me to dispense how I chose to. Whew! no lectures!

They are going to start weaning Mac off the prednisone. They said it could be a lengthy process as he has been taking it for so long. He will still be taking the steroid gargle for now. It will be a long transition but still it is a transition that makes us feel like we are moving into a positive direction.

Mac's big miracle for the day was the way everyone came in just GLOWING! to tell him congratulations he had made it to the two year anniversary of the transplant. We kind of got the feeling that if the leukemia, the transplant or the complications were going to get him, they would have done it by now. I don't know if that is what they were waiting for or not but they let me ask questions. I got answers. I feel like I know what my job is to be for the next four months. Then he will go back over for a follow up visit.

Four months.... November 30th. It won't be hanging over our heads as we go into christmas. Whew!!

Louie

Iowa City

Tomorrow Mac has to go see the transplant oncologists in Iowa City. The only thing that keeps him there is that he has the smallest amount of graft vs host. I do mean the smallest amount. Just a small lumpy bit on the interior of his mouth smaller then the size of a quarter. Oftentimes not even noticeable. I have read about treating the GVH with gancyclover and being done with the issue. So far, Iowa City has dicked around with this for over a year. Dragging it out with miniscule doses of steroids. To me, it seems that they are maintaining the problem, not treating and curing.

As we get close to the Iowa City visits, the stress in the house is palpable. Little things set Mac off. He doesn't want to eat. He just tries to bury himself in the internet or exploding aliens on one of his games. It's hard. I try to explain to them that their inaction is making the situation worse. They do not acknowledge me there. They do not believe that after thirty-three years I know what makes him tick. They do not believe that I have the capacity to learn and to keep up with various treatment options. Over there he is just another cog in the wheel... it's a big place. They refuse to take advantage of the fact that I am his walking chart. I've got the details in my head, and I have never seen any individual over there whether on the floor or in the office, check HIS chart. They update his meds but the med page on their computer program has an automatic reset or something so it is typically wrong. That usually gets them upset with me and I get told EVERY F**KING TIME that I have to be sure to give the proper dosage and I get lectured.

I don't want to go. I don't want Mac to go. I don't want to have to be there and have trouble breathing and have my stomach hurt. I want it over.... really over this time. I want Mac to be okay. I want to finally be able to live in my "happy place"

Tomorrow Mac goes to Iowa City and I will be afraid until it's over.

Louie

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

Okay, it's like this......

The first things I remember wanting in my early life were pancakes and horses. The order of importance probably varied on a day by day basis. But despite my early years, I held a strong belief that Trigger was too much flash and the true hero was Dale Evan's buckskin bay. Though most would have to agree that the shining star of horse heroes would have to be Flicka. At least that was the case in 1960.

The inevitable happened. With age came pancakes made of nothing more then Bisquick and the only horses I got to spend time with were on merry-go-rounds, pony rides and a wonderful pony by the name of Belle. She belonged to my uncle and she was always content to just stand by the fence with me. I was convinced that we could read each other"s minds.

Kept growing. I forgot how good pancakes could be. Growing up is about survival.

I turned out to be a bit of a hippy child crossed with the Jesus movement and with a social conscience about a mile wide. I got my first horse as a four month old a year before I was to leave home. He was given away when I went to school. I found out when I came home to an empty pasture. It was made harder because we had been able to read each other's minds.

Got married. That was followed by having three daughters and many adventures. The adventures involved more imagination then miles, but a good time was had by all. The girls left home and then my Dad died of congestive heart failure. That's when a great deal of introspection occurred and I realized that I still hadn't figured out what I wanted to be when I grew up.

This sucks. Ends up that when you're worried about what you want to be "when you grow up" during your mid-life crisis, you tend to screw yourself up a bit. As I have waded through this morass there have been some defining moments. Weddings, of course, graduations, people that enriched our lives..... some that didn't. Then two months after his fiftieth birthday, my husband, Mac was diagnosed with leukemia. Guess you could say this is where it got interesting.

This is when I found a quote somewhere. Don't remember who said it or how it went exactly, but it said that when laying on their deathbeds, no one regretted what they did do. They just regretted what they didn't do. Considering the possibility of a deathbed being just three feet away from me, this philosophy had a good deal of clout. Mac went into remission. His leukemia relapsed three years later. He had a bone marrow/stem cell transplant last July 31st. He had complications. He is better now.

I don't care what I become when I grow up anymore. And I am going to do my damndest, to not go into the ground with any regrets.

I make really good pancakes. I have a welsh mountain pony named Chloe. I have a haflinger horse named Pip (Philipa)..... and I do believe that we are starting to be able to read one another's minds.

louie