Sunday, October 30, 2005
Somewhere in my simple simple mind, I have convinced myself that if M-E makes 6 months into Maintenance without relapse, she will be home free. I am sure that if I don't hope too much, keep to the program and keep a close eye, the evil liukemia will not return. As we move further and further away from intensive treatment, I realize how debilitating that part of our lives has been.
While you are in the process you just keep going. You just keep at the process and don't even question. I realize how crazed I have been the last few months. It comes to me when I feel we can sit down and watch a movie together or I can let myself quilt and not feel guilty or I feel guilty that the laundry has not been done.
We have stepped so far off the path that I don't know if I want to go back or even if I can find it.
I can remember a Ray Bradbury story. I am sure it was a short story. The people were taken back in time and allowed to kill dinosaurs. They were to stay on a path and only killed the animal just before it was to die. The main character stepped off the path and wondered around the forest. He climbed back on, pretty happy with himself and returned to current time. When he arrived everything was slightly different. The uniforms had swastica's on them, the area was a different color, the world had changed. He looked down and on the bottom of his shoe he found a small glistening wing of a butterfly. His act has changed the world.
I feel that our feet are covered with wings and things may never be the same.
Saturday, October 29, 2005
So any way, Grandma always made things special. Nice dishes, silver ( not sterling but great plate). Flowers, soup bowls, candles, well balanced, colorful nutricous meals, you get the picture. My mom, while raised by Grandma, seemed to have a bit more of the Okkie genes. She has been seen barefoot, in the snow chopping wood. She has pulled the head off her share of chickens and can make pie with the best of them. She has dishes she loves and great silver plate, and knows where the lace table cloths are. She was the one that taught me that the reason you use lace table cloths is that the food falls between the holes and you don't have to change the table cloth too often. (True story).
So, I have a bit of both. I love dishes and silverware and I appreciate the well set table. When M-E was little I started to buy her Sterling. Queen Elizabeth I by Towle, of course. I decided that she would not be without her sterling. She has three sets plus the child's set. She could care less but I am sure that Great and Great Great Grandma approve.
So, I look for her pattern on E-Bay on occasion. During the search, I have discovered the world of Sterling is very complex. I realize that I am totally uneducated and essestially nothing better than a pretender. I know nothing about proper table setting. Martha would fire me in an instant.
I have a list of sins so long that only a small portion can be shared here.
I don't have a lemon fork, further more, I don't know why the tongs are so weird.
I have a large fork but I am not certain if it is for cold meat and I am confused why I would need the cold and hot meat could not share.
I don't have a single strawberry fork and I am not certain if every one gets one or just the strawberrys.
I don't have a cracker spoon. To make matters worse, I have never had a cracker spoon. I had to be informed but a much more elegant and educated person that they are only for oyster crackers. Now what do I do about my Ritz?
The potato fork dilemma continues with the unanswered questions like, does everyone need one. Are they used only on baked potatoes could they be used on home fries also, or would home fries be served by slotted serving spoons.
Bon Bon Spoons are different than Nut Spoons. Pastry forks are different than Salad forks, oyster forks are not the same as pickle, olive or dinner. Of course there is that never ending duck egg vs chicken egg issue. You would never eat a chicken egg with a duck egg spoon. Heavens, that would require your instant departure from the "I have too much time and space to store stuff society."
Okay, there are my early morning issues.
Oh, still no ideas about Halloween. I think I will be the lady in the Orange and Green and yellow house that gives out candy. Now there is something I can handle.
Belle and Karen are expecting 6 to 8 HUNDRED children.
Tuesday, October 25, 2005
We went to the Memorial service of James Haines yesterday to support Maggie, our dear, dear friend. We had gone to our friend Miller's service a little more than a month ago. We have vowed to find other reasons to gather.
It was very nice. Maggie had arranged to use Anthony's and there was great food and lots to drink. She commented that all the food that was ordered was her Dad's favorites. Many of his friends and most of his family joined the gathering. There were people that had known him for decades and those that had worked for him for their first jobs. Many old proud gentlemen shed some tears at the loss of their great friend.
Maggie's brothers both talked and Bill gave Maggie a small part of the credit she deserves for all the care she gave her dad over the years. Her other brother Jiggs( It is a real name) said some very lovely things.
It was the type of gathering we all hope we can pull off, either for someone we love or for ourselves. Humor, tears and mostly lots and lots of love.
Monday, October 24, 2005
Isabel loved the leaves. She put most of them in the container but there was a certain amount of throwing involved.
It is a skill and something you have to practice. I have learned the skill but need to "stretch" more all the time.
Today for example. I am up, I am ready to go. The house is in marginal shape for the housekeeper. Bless her heart. I have the dog fed, the dish washer ready to go, the washer and dryer are working. I have put items out for mailing and here I sit on an ice bag.
M-E is just off her prednison. It is the first night she has really slept in a week and she cannot get out of bed.
I have taken to the ice bag for reasons I do not understand. It has made such a huge difference in my mobility. I am not certain as to why ice would make such a difference. Maybe all flexiblity come from times of quiet and then of activity.
I still have lots to learn and more stretching to do. I am better at letting go of the tense feeling in the pit of my stomach that comes from anxiety. It takes a lot for me to get to the place anymore. It is still not perfect ( ask poor Nancy and Rhonda about Friday). I have to learn to let go of it before I do get there. Another place for me to practice my flexibility.
Sunday, October 23, 2005
It was on the pear I bought at the store this morning. A little pear, a pear I had never seen before, one of about 8 different kinds of pears that were at the store, all bearing a fruit sticker.
They cause me endless trouble. What do you do with them? Can they be recycled? Do they remain undigested for years in you stomach? Are they made from a substance that will cause me to be in class action law suit in the distant future?
The biggest question. Whose fault is it? Is it because there are just so many different varieties of pears because growers are trying to make us crazy? or Did we demand more variety? Oh, it might be the fault of people like me. I will try most things at least twice. I did come home with three of the eight variety this week. Two different types of yams and three kinds of greens and 100% organic whole wheat flour. Opps.
I am the sole cause of fruit stickers.
We are going out once today so it has to be an efficient trip. I am not sure I can get M-E out of the house. She is pretty entrenched this week-end. She is done with her Prednisone for this month and she will be sore for a while and hungry and grumpy.
A bit of much needed rain, not enough sleep (Three raccoons let Sadie know they were visiting.) but great coffee. Thanks to Jack and to the Free Trade people.
Time to make a shopping list.
Friday, October 21, 2005
It is an up happy hip. It has been complaining a lot for a long time. I have been ignoring it so it is totally out of hand.
I finally made the call and went to see the Orthopod. You have to be in the right mood for a visit with them. They are always tall and skinny and disgusted with people of "substantial" size. So you have to be ready to have the :
" You need to loose weight"
Like I don't know that nor have I known it for the last 45 years. It is like hearing the surprise in the voices of government officials when the tragedy struck New Orleans. "Oh, we seem to have a problem in the Super Dome where there are thousands of people and no supplies. "
So back to me. Well I have bursitis. It is the inflammation of the Bursa which is the doctors word for everything that is not a muscle around a socket. It gets inflamed and then your muscles contract as you hold them tight because you don't want anything to move and then it gets worse and then you ignore it and then you don't go see the doctor and it gets worse and then you have to have the "You need to loose weight" talk.
So, physical therapy, ice, time, patience and if it does not get better, Shot into the muscle. Oh like I am going to let a skinny doctor come at me with a needle.
So moral to the story: I have hit the age that if something hurts, I should not ignore it. I should not feel like I am wasting the doctor's time. Pain equals a problem. Just walking it off is for stupid boys in their 20's.
Thursday, October 20, 2005
( This is the plastic Chicken Ted Mittermeir gave M-E because we did not have any Garden Decorations. She is our favorite, so no laughing.)
Permission is defined by Websters as: the act of permitting.
Permitting is defined by Websters as: to consent to expressly or formally
I have learned over the past few months, to give myself permission "to do" and more importantly "not to do" many many things.
I now can go to bed if the counter is not clean.
I can fix toasted cheese sandwiches and soup and call it dinner.
I can let the laundry pile up and buy new underwear if I need it.( Old habit returned from Law School Days)
I can forget to pick up the paper and let a few sit on the porch and then recycle it.
I can have more pillows than anyone else in the whole world.
I can play hours of mindless solitaire.
I can ignore my daughter's rants and rages when she is on Prenisone because she is a great kid and it will pass.
I can let the dog chase the neighbors cat when they are not watching.
I can go to church and light candles I don't pay for.
I can be mad a God sometimes while relying on comfort the next moment.
I can sit back and watch the leaves fall and know they can be raked this week-end.
I can let the Morning Glory grow and pretend it was the planted kind.
I can shop on E-Bay just for fun even I don't buy anything and forgive myself when I do.
I can bid on things just to make the price go up.
I can paint my house colors no one else will.
I can wear jeans to work on Thursday.
I can say no to cases that will make me crazy.
I can take a few minutes a week to quilt and watch bad television.
I can take a nap instead of doing the dishes.
I can worry endlessly about M-E because that is my job.
I can be thankful beyond measure for all the support and good food that St. Joseph's has provided us with for these many months.
I can look forward to the future and be hopeful that it includes M-E.
I can walk the dog in my bathrobe and not care about the neighbors.
I can spend a few non-billable moments with my office mates because they need some help with a serious problem or just want to chat.
I can write on my blog when I should be doing other things.
I can ignore the sorting in the basement because it can wait.
I can use lots of coffee in my pot because I only drink a cup or two in the morning and it should be good.
I can leave my christmas lights up too long.
I can have more than one Christmas Village.
I can spend hours with M-E reading Harry Potter when she has time.
I can ......
Okay, I have to feed the dog and wake up M-E. It is not a perfect life but it is one I would not have missed for all the tea in China.
Do they still grow tea??????
Tuesday, October 18, 2005
It was exhausting for both of us. We are sort of out of practice. I was able to get all her numbers for the last part of treatment and that was nice. She has good numbers. She is in the 2000 plus range on her ANC. She will be falling this week due to the chemo but it is a nice place to start.
There is the little problem with her foot. She stepped on a tack. It was on the floor and it has been bothering her. It was all red and we all freaked and Karyn was calm and told us not to worry and to soak it.
We are in such a different place than a year ago. I still worry. I am still on edge like a cat with a bunch of dogs barking at them from below and a hawk hanging around up above. I don't know how long it will be before I quit worrying about a relapse.
Can not think about that now.
Mom brought up a rug that she swore would not ever leave the bathroom. It was very stiff and ridged.
Well she was right. No more disapearing rugs. But the rug and the content of the cat's feeding dish and the tray and the water could be smashed all over the bathroom...... at 4:00 am.
We had a visit by the raccoons and they tried to come in and evidently were only successful in making lots of noise. Sadie is now on guard. I am not well rested feel safe.
Monday, October 17, 2005
She is asleep. She is NPO or nothing by mouth. I have to wake her up soon and then we have to leave for the hospital by 7:30 a.m. She will be having an ultrasound on the spot where she had a blood clot in her jugular vein and then down to clinic for a blood draw and the old Methaltrexate into the spine routine.
Then home for some important post sleep.
We met our new Make a Wish person yesterday. Tera and Keith came over with pizza and Italian soda. They had a chance to meet Ruth and Whitney. It was nice. Zeeks Pizza donated the food. I am amazed at the generosity of people and organizations.
No one wants a child that can receive a Wish but working with this group has been very gratifying. They are a first class organization.
We are trying to replace bad experiences with good. Having Pizza with your "Wish" volunteers close to a full moon in a "Good Thing."
Sunday, October 16, 2005
As the smells from the oven emerged, the friends begin to gather. One at first, then more and then the noise level increased.
Carolyn was here yesterday. She figured out that we have been together as a group since 1998. People have come and gone and come back. It has been great. A supportive group of women together. Friends through good and bad times. It is always very invigorating for my spirit.
The St. Joseph's Auction quilt is completed. I am going to do a label and deliver it on Tuesday. The last of many quilts that have been part of my contribution to the school. The next one will be for Holy Names or Blanchett.
The deliver of this quilt makes me realize that our time at St. Joseph's school is almost over. Each event, each act that marks the year will be the last. We have been at St. Joseph's for 9 years. I wanted M-E to have a continuous connection to a school and not move around a lot. Who thought, with my migrant history, we could do it. Out of chaos and instability, we all have the ability to create calm stability.
Friday, October 14, 2005
We have made it through another "13"th. I don't even know how many months it has been since we entered this rabbit hole. It may be 13. I want it to be the 13th year.......
She loved Holy Names. The school, the teachers, the students, the atmosphere. Oh.......... I want it for her. She is such a special child, I hope this is in her future.
This school selection thing is one of those issues that is as hard for the parents as for the children. It is different for them. She has never had to go through this selection process before. It is new. She was too little to know about the first time I had to choose schools for her. Now she knows. We have not frame of reference about how they will evaluate her, how she will test, how she will be seen by the schools. All that sits in the pit of my stomach is my memories of applying to law school, the essays, the letter of recommendation, the waiting.
The disappointment in not getting my first choice. The disappointment is countered with the knowledge of how it ALL WORKED OUT.
It all works out. The choices and paths we take have good results if you have the faith they will.
I remember trying and trying to move to Eugene. Boy that would have been a bit mistake. We would have handled it, but being here during this time has been the best.
Wednesday, October 12, 2005
"Choice" is something we think we need but when faced with choice it can make us very uncomfortable and down right cranky. We are not happy about having to make the final decision. We all hate the "you can not have your cake and eat it too" statement about life. The problem with "choice" is that it does not come with a guide book on how to make the right or the best choice. We have to rely on our friends, families, past experiences and our gut. Not a very scientific why to run lives.
Some times we only have hard choices and choices that have huge consequences and there are no good answers. Those are the worst.
I think that as a society we have too many choices in some arena's and not enough choice in others. Do we need 14 brands of canned tuna and 86 different types of mustard? And yet we have only 2 or three choices as to vehicle fuel and are given those choices if you live in the right place and spend 6 months on a waiting list.
I look at my own life and those of my client's and friends and we are all making big choices. Chemo or no chemo. Move or Stay. Public or Private. Surgery or alternate therapy. House one or house two. Married or stay single. Divorce or stay married. Have a child or terminate. Have a child or relinquish for adoption. Republican or Democrats. Steak or chicken. Vegetarian or Vegan. To buy or lease. Cable or satellite.
Let's face it there are no true "Win Win"situations. Each choice comes with a problem (except maybe the steak/chicken thing since so many meats taste like chicken.) We simply don't live in a world that makes it easy.
People long for the "good old days". Some of my contemporaries talk about the times when women stayed home and took care of children and baked and had coffee with each other. I long to have been a stay at home mom with a house full of kids and meat loaf in the oven every night. ( Maybe M-E wouldn't hate meatloaf). Those that lived that life, a life they did not necessarily choose, are not so sure was such a great thing. They remember it as a time of little choice but one that was great for the husbands and the children. Ask anyone over 65 about the way "things used to be?"
Choice paralyzes some, invigorates other, frustrates most. Choice points out the problems in our lives and consequences of past choices. They all start out bright and shiny but sometimes turn dark and foreboding. Sort of like a pile of fall leaves, the ones on top are fresh as the other's are beginning to decompose. The good thing is when it is all said and done good things come from the entire pile.
Well it is time to go forward and begin the process of finding the right high school from Mary-E. She visits Holy Names tomorrow. She will be spending the day with a student "guide". I saw her in class and she seemed to fit.
I will pray that all of our choices make a nice pile at the end of the day.
Tuesday, October 11, 2005
Or you worry about getting your homework and getting behind and the more you worry, the more you are not able to get the job done.
Uhm..... I wonder if there is a lesson here?
Monday, October 10, 2005
Her hair is coming back in so thick it is sort of scary. It is very dark and very short but very cute. She is pretty excited about it. She says that she is going to grow it to her waist and then cut off 10 inches for Locks of Love. As she put it so well, Mom not everyone feels they can be seen without their hair. I was lucky. I have a cute head.
That is hard to argue with on any level.
Sunday, October 09, 2005
I did more than the garage. It was just an added bonus. I had it painted when the much needed trim work was done. So here are some pictures.
The solid picture is of the front door. And the lawn did not photograph very well. It does not look that bad in person!
We have all had to invite new things into our lives. M-E has a new sister. I have been dealing with M-E's lukemia, and now Sadie has a real rival.
Her name is Mea "Culpa". Here is her first picture. Note she is sitting on one of Sadie's favorite blankets.
Saturday, October 08, 2005
Sadie is quite excited this morning. The rest of the neighborhood does not share her enthusiasm. She was able to chase the cat that was stalking the squirrel. This sort of behavior is sort of a doggie double play. We were out walking early and no one in the neighborhood joined our exploration.
It is a bit gray but not cold. No rain, yet, and the leaves make a wonderful shuffle noise when we walk. Now, I am the only one with leaves so I have to walk back and forth lots to get my fill. Oh, well, it is one of those days where I will be filling bird feeders, raking leaves and doing some minor winter clean up. M-E will be doing some homework and trying to get her IPOD up and running again. No excitement.
I watch many run around and am glad I have learned to not be in that place of constant motion. Time for quiet is very good for the soul. My sole has needed lots of quiet. ALL finally let me be in a place where that is a reality.
Thursday, October 06, 2005
No statement says all that could be said. No prayer fully expresses our faith. No confession brings perfection. No pastoral visit brings wholeness. No program accomplishes the church's mission. No set of goals and objectives includes everything.
This what we are about: We plant seeds that one day will grow. We water seed already planted, knowing that they hold future promise. We lay foundations what will need further development. We provide yeast that produces effect beyond our capabilities.
We cannot do everything and this is a sense of liberation in realizing that. This enables us to do something, and do it very well. It may be incomplete, but it is a beginning, a step along the way, an opportunity for God's grace to enter and do the rest.
We may never see the end result, but that is the difference between the master builder and the workers. We are workers, not master builders, ministers, not messiahs.
We are prophets of a future not our own.
Archbishop Oscar Romero
WE all have a different perspective on life. Our filters keep the world in our view and not that of the rest of the world. We are changed each and every day as a new truth or reality slips into place as a new lens on a camera or that weird thing the eye doctor uses to see what your prescription should be.
I sit here this morning in awe as to how much mine has changed. Some of the good, some not so good. M-E's illness has pulled my focus away from many points of concentration. Since she was diagnosed, all efforts have gone into her recovery. The amount of energy it has taken is hard to measure. It is not that I have had more energy, it has just been focused more intensely.
It is sort of like Sadie. She has a god given desire and purpose in life to hunt the "rodents" of the world. She has generalized and now includes all small creatures that will run from her. She can not be shifted off focus for very long. Her determination to "get" the creature is overpowering to her. She will get the creature.
She is sitting by me in her kennel as we speak. She has been very agitated this week over the raccoons. They have been enjoying the almost ripe grape buffet. This morning she was especially nuts. I heard her bark like the house was on fire, while a flood was happening. I went down stairs to put her back to bed.
Sitting at Lucy's bowl was a cat door sized raccoon. Sadie was so angry and upset her heart was about to jump out of her chest. Her world had been invaded and she could not get to the 'culprits'. I have never seen Sadie so focused. From her perspective, she was doing the right thing. From mine, she was doing an good job as a watch dog. From Mary-E's she was just a big noisy problem.
Sadie put on a great show for the raccoon. She barked and jumped and ran and tried and tried to leave the floor but gravity was not cooperating. The raccoon was nonplussed by Sadie's activity but managed to saunter out when Sadie's reinforcements arrived.
Sadie felt vindicated. She has been telling us for years that we are about to be attacked and she is ready to defend. I am going back to bed now. From my perspective that is the only thing to do.
Wednesday, October 05, 2005
For it is true we often cannot help those closest to us:
Either we do not know what part of ourselves to give, or, more often, the part we have to give is not wanted.
And so it is those we live with and know who elude us.
But we can still love them.
We can love them completely, without complete understanding.
Tuesday, October 04, 2005
M-E is ready for school, she is working hard on all her homework. I had worried that she would not be able to handle the hours of concentration it might take but she seems to have recovered all those skills.
A year ago we were doing radiation. Hands down: This is a much better "dark" morning.
I need to do some more fall activities. Some leaves have been raked. The cover crop is planted, the pansies are in the pot. I have lots of "Fall Clean-Up to do.
The birds are asking for dinner. The Flickers are back and were squawking at me. I finally put out their suet. The other's are complaining. But it is not easy. I have to go to the Tweetery and buy white millet for the ground feeders. I have to have only sunflower seeds for the rest. I need corn on the cob for the squirrels and real nuts (not peanuts). I will make the rounds this week-end and try to get it right.
Monday, October 03, 2005
We have spend the last 13+ months trying to convince her bone marrow not to be an over achiever. It will be another 20 0r so months that we keep giving it daily reminders of the need to not return to that bad habit. Daily doses of Chemo seem to do that. Being off for two weeks has definitely made me crazy. The house paid the price this time. Orange, yellow, green, red.
I was in the waiting room and was hit with a good dose of reality.
We are in such different place than a year ago. We are hauling in homework and chatting with good friends and relaxing a bit. Mary-E looked at a child and said "Mom they just started." You can always tell because they have the "hospital" issue note book and that haunted look. The one I am sure we had for months.
It is all so so much. The hours and hours we have been in the hospital and the emergency room. The world was upside down for so long. I am not sure it has righted itself, only that I can look at it and not be shaken by what I see. Like those tests where they put glasses on someone that makes the world look upside down. Within 24 hours, your brain switches the world so it looks like it should.
We are getting used to our world. I could live with this view for awhile.
Sunday, October 02, 2005
We are having a gray, rainy, leaf dropping day. One tree is almost bare and the other decided to catch up and at least turn. We had a down pour of significant measure yesterday. Hail, rain, rain, and more rain. It was sort of fun for about the 10 minutes it lasted. I am not going to move to more tropical climes for more of the same.
M-E is doing homework, I have made messes all day in an effort to be more organized. I think I need more plastic boxes and notebooks.
I was working on the never ending issue of M-E's medical bills. We are still receiving new bills from a year ago. I used to think that writing checks to the school was painful, this does not even compare. Checks to the hospital are sort of like buying alternators. You know you need them but a new purse or a yard thing would give you so much more satisfaction. I would much rather give my income to the school than to pay for "clotting studies".
They do not make it easy. Each visit generates a new billing number from Children's and a separate bill from the doctors. All the doctors work for their own little Children's Doctor group, unless you are seeing a doctor that works for the University of Washington's little group. Then there are the bills for " miscellaneous". Those catch all the items that are billed differently than your usual daily bill. To make things worse, the insurance companies are all "rebilling". I have received a refund check for $25.00 but just endorsed it and sent it back for a new bill that now says I owe another $830.52 for the first admission more than a year ago. Some bills are $20.00 some are still in the thousands. I have given up trying to figure it out. This I know. I have a stop-loss. I have to pay co-pays on each visit to the hospital and for each prescription. I will not pay more than the stop-loss to the hospitals or the doctors( except for the co-pays.) I can not do more than that. So much of all of this happens when I am not around. I can comprehend room charges but not determine what is "special nursing". I figure it is much like the leaves falling. Why are some gone and other's not?
Tomorrow is a chemo and doctor day (three separate bills will be generated plus doctor and prescription co-pays). We will see what they say about starting Chemo again. I am prepared for most anything.
We are having sushi tonight because her numbers should be up and we can.