Saturday, February 26, 2005
When I looked up just now, everything was gone. The fog isn't thicker, it is just interacting with the light to create a curtain. It is the dusky time when everything is the same color. The time we can not distinguish the real objects that are very real but illusive. It is different than being "in the fog" and a bit more disconcerting. When the fog is thick and soupy you have no chance of seeing anything. You go slowly and you creep down the path you are traveling. When you find yourself in a monochromatic world, slow does not help. It is more paralyzing to be in a place with no distinctive boundaries.
We have been spending lots of time on a monochromatic planet. Lots of sameness with that knowing that things could easily transition into horrible darkness or the light could finally shine through. I know that we are always looking for those boundaries and trying to make distinctions to make our world have some predictability. Each and every day that we are in contact with someone that has been through the process, we try to make our child's case different. We try and see the good similarities and if there are problems we try and distance our case from theirs. There are people on our planet but they are in the same fog.
I realize that I have been in the fog for a long time. All the edges of my former world have been erased. We are sitting on this very small planet and not sure how to get off or if we are still in the same universe. Things have contracted to this most essential sphere. I am not sure if we know how to get off the planet or if we are allowed to take moments away from our efforts on our new planet. I see other worlds as we travel on our orbit. I see families getting out the door to school as if that is normal activity, or Mom's shopping at the store, or people planning spring break or trips to Portland, camping or even to North Bend. I listen to people that talk about dinner parties and spa appointments and going to the theater. They plans things and have a certainty they will be able to do what they have planned. I think that some people are afraid to share with us the world. I think they are afraid to tell us they are going on an exotic adventure. I think they feel we will be jealous in some way. We love to know that our fog has not engulfed everyone. We need to be reminded there will be life beyond this current reality
On this planet there will be no planning allowed. It is a planet that time has no real meaning. Time expands and contracts with ease and no real predictability. While we sit in the fog, we are not allowed to see beyond the edges. We have a sense that there are things beyond the barrier but know that we will fall off our current perch if we expend too much energy in tying to reach that place.
We have to do t his transit. There are no ways to make the fog lift for the time being. We have to wait to see if we will be seeing light or whether or not the darkness will give us our boundaries. We are given hints on occasion but then we are often given reminders that we must try and keep our balance while we are here in this place of cloudy edges.
Thursday, February 24, 2005
She has always been an easy kid and the kid is gone for now. She has lost her trust of the world and her own body has betrayed her. She sees things so differently. It is wearing for her. There is so much disappointment in her world right now.
I think the best analogy can be taken from something my sister talks about. She always talks about our "tool boxes". Our parents give us the best tools they have to share but sometimes we have to find tools in other places, spirituality, healthy loving relationships, therapy, friendships, Oprah or Dr. Phil. Right now we are at the bottom of the box and need to find some new tools. I know we will find our way through this but I really could use a trip to the Hem/Onc Home Depot.
We are all a bit upset. We have had too much exposure to the sun and the moon. I think those of us from Seattle are a bit on edge. We have had weeks of clear weather and now it is down right warm. We have been able to see the full moon come into's full glory and we don't know what to do. We are waiting for God to review the world map and say "opps, the rain was not suppose do be in California!!!!" It is that "waiting for the other shoe to drop" syndrome.
I will enjoy each and every moment I see the sky in it's blue spender and hear the birds and watch the moon rise and Orion ride across the sky. I am looking into my tool box right now to see if I can find the tools to keep worry away. Wish me luck.
Wednesday, February 23, 2005
It was hauled away to the "Recyle station in the North End." I loved that dishwasher. I had searched the world for it. It served us well. It was too young to die. It has been replaced. Shh.... I have tried not to upset the Fridge and the Stove. I was sensitive to their needs to still feel wanted and did not bring home an obviously new model. No fancy titanium finish. Just plain white. Not that plain white is bad or anything!!!! It is just fine for all of our purposes. ( I am going to look and see if I can get a new panel. I saw on the DVD that came with the washer that they can come in fun colors. ) I better not worry about that for now. The washer and dryer might be listening.
Monday, February 21, 2005
She was looking forward to some time with Whitney but then Ms. W went to spend time with her Aunt. M-E understood but she loves time with Whitney. Whitney is such a breath of fresh air. She is so much in her own world and it is such a happy place. It is a place that Mary-Elizabeth likes to spend time. Whitney was so disappointed in me because I don't know any commercial jingles. I see great things in the future for Ms. W. She can remember anything if it is in song form.
M-E finally agreed to go to a movie. She was not able to get the computer to work so she came down stairs and assigned the task to me. I went upstairs and tried to do the same. Just as I was beginning to fiddle with the computer, I heard a noise and looked over at the dishwasher. Black smoke was coming out of the vent. I freaked. I opened the door, found no smoke, but it kept coming. I called the fire department and they told me to turn off the power. I was able to do that after awhile. I think it might be time to rewire or at least re-label to breaker box. The fire truck came. Three really cute guys and a scary but strong women also came along.
Our next stop. The Dish Washer store. I hate to buy things like appliances. They are not as much fun as Christmas Houses or fabric or flowers or ................... Oh, well.
It was my lesson for the day. God does take care of us. If I had not been upstairs when it started it would have been very very bad.
Saturday, February 19, 2005
The hair is definitely back. It is about 1/2 long. It is an unremarkable color. Sort of a dull dark brownish grey. It seems to be straight and is still very very soft.
It is supposed to leave again soon. She has had three doses of Doxieyrubinson. The Rubison family evidently does not approve of hair. They banish it from all possible places on the human body. The Rubison's are a scary family. The medication is bright red. Deep and pure in color. It looks like cough medicine. I don't think things we put in children's veins should be colored. Evidently there is a medicine called Blue Thunder that is bright blue. Opps, back to the point of this entry.
Mary-Elizabeth woke up today with hair sticking up!!!! Her first bad hair day! We are so excited. Bad hair days. The other side of the coin.
Friday, February 18, 2005
Oh, My God. I am so amazed at what 10 milligrams of the stuff does to my daughter. The change happens almost overnight. The tears. The anger. The constant eating. On Tuesday we went to Costco after our appointment and had a hot dog and bought a huge box of cereal. It is gone. The milk is gone. She is not just eating cereal.
The mood swings are the worst. This brings out the deep deep blues in a person. She can cry at the drop of a pin or the appearance of an ice bag. My sister suggested that she be given Olazanapine. I looked it up. It is a powerful anti-psychotic drug. Everyone thinks that the ball players are hitting the balls out of the stadiums because of their added muscle mass. They are doing so because of their anger at things like commercials on the television or the fact that the milk is not in the right spot in the fridge or because someone failed to wash the right shirt or the sun is out or it is too cold out of the sun or the restaurant is not open or it is Wednesday and not Thursday.
Instead of being upset at the players, we need to start groups to help the families and other associates deal with the issues.
On more pleasant fronts, things are moving along. The houses across the street are getting better every day. I have been able to do a couple of things around the house like take the recycling to the curb. It might not sound like much but it is the little things that seems to make a real difference. I was able to file my taxes and I hope to plant some flowers this week-end. Mom bought us some beautiful primroses that need to go into the pots. The daffodil's are blooming and the sun is shining. M-E has not had to go to the hospital for a fever for awhile. Life is good.
Thursday, February 17, 2005
It is sort of like the weather we are having right now. It is very very cold at night but the days are warm while in the sun. We are waiting for M-E's numbers to drop and we are on guard and waiting for the fever to return. It is sort of knowing that the first wave is the beginning.
I guess I am realizing that we have a new normal. It is just very different than our old life. We have settled into this one. It is our life. It will be for a long time. It is time to work on making this life doable. I think that requires that I let go a bit. I am going to schedule a week-end away. I am just going to do it. Johnny and Ana can handle M-E if she gets sick. What a novel idea. I have to work on that. I want to quilt with my friends for 48 hours. I want to be waited on and not have to cook. I will get on that right now.
See, good things come from weird weeks.
Tuesday, February 15, 2005
These are the cites for two different groups.
It is amazing what people come into our lives. Someone that works with Whitney's Mom and her friend are training and running a Marathon with M-E as their honoree. She is pretty amazed at what they are doing. They are training and raising money for the Lewkquemia Society. One race is next month in California and the other is in May in Vancouver. It is pretty exciting. The link takes you directly to their site. I wish we could go and see them race. I am sure there will be lots of pictures on the web when the race is over.
So I soon became adverse to the world of vacuuming. I hate it. It made me sneeze, it was noisy, the shag carpet always had secret noisy stuff hiding in wait for me. I have never been without a vacuum but do prefer when someone else uses it on my behalf.
I did fall in love with the Miela when Mom sent it to me about 7 years ago. More accurately, I may have fallen in love with the clever German Packaging. A box arrived and when I went to carry it home, I put my hand through the holes intended for transporting the box and put my hand around the vacuum handle. The box did not break, it was easy to carry and I was in love. Now mind you, I was only in love with the packaging and ease with with which I was able to carry the item. I still hate to vacuum.
Some snide comment was made about the washing machine. I love my washing machine and dryer. I just can not seem to fold and put away the cloths that emerge. That is another issue.
M-E is alseep. The affects of the Steriods from last week have finally worn off. Of course she starts them again today. We were at the clinic yesterday. She has to have a blood transfusion this week and a dressing change. Her ANC went from 6648 to 1078 in seven days. Here we go. Our rest time is over. We are getting better at handling things, I hope. This is a long journey but we are making progress.
Monday, February 14, 2005
Six months. I find that we have less difficulty with this date due to a couple of weeks that M-E is feeling better. She is eating and has a bit of energy. Maybe her recent anxiety is from the fact that she does feel better. She has time for anxiety. I will take what is dealt to us. Good Bad, it is what it is.
Exciting news. My vacuum is not dead. It just needed a new filter. See I have a life. I have exciting things going on. I am not obsessed with shots and pills and treatment schedules. I have time for fun and creativity. I am just learning to enjoy the simple things in life, like a working vacuum.
Happy Valentine's day.
Sunday, February 13, 2005
I miss relaxed time with my friends. I have great friends and I am missing important things in their lives. I have been so stressed, they are beginning to withhold information from me. I just hate that. I understand but it doesn't make it any easier. This disease is not just affecting M-E, it is affecting so many people. I hate it but I guess is part of our new reality.
I have to try and keep quilting and keep working on my never ending projects. I have to try and keep sane and try to figure out how to manage all of this better. Most times when I am not as overwhelmed I am just pulling a Scarlett. "Tomorrow is another day". Having Mom here for a week helped. It is a mini vacation for me. Laundry is done. Some stuff is recycled. The fridge is cleaned out. It gave me a bit of a break.
I have a better idea about the next few weeks and I am through the most difficult part of my big case. All and all things are good.
The houses across the street are coming along. Siding. Electricity. Plumbing, windows and lots of people going through them. They are cute and will be $300,000. Three bedrooms, 2.5 baths, a fire place and a deck looking at my yard. I wonder if the builder will be giving me some money to spruce up my yard. I think that sounds like a good idea.......
Saturday, February 12, 2005
I love those snow days. Those days when the world stops. As a kid it took lots of snow, more like several feet of snow and good strong winds to ground us. In Seatte, the words "Snow in the forecast" bring the world to a halt. You cannot get near a store, the tire places are jammed and the kids negotiate for a later bed time. This town comes to a screeching halt.
For those of us that were raised with real snow it is a funny thing to watch.
When I first moved here, I scoffed at the reaction. I could not believe that any amount of snow under 2 feet could keep me inside, afraid for my life. I would venture out on foot or by bus or even use my car. I knew how to drive. I knew how to stop. I had snow tires and chains and years and years of experience. No problem. What I did not understand was the I was not alone on the roads. I was surrounded by people that had little or no experience with driving on anything more slippery than rain.
Like with many things, I was very very wrong. I headed out on the bus and soon found that the bus people forgot to put on the chains. They did chain up the buses but only after they were stuck. As we headed down the hill, I saw no less than 6 buses stacked on Pine Street waiting for the chain people. I figured it would be all over and I could get back home. Thank God I was younger then. I had to hike home. Oh, well.
Then it froze. The snow became lots and lots of Ice. It was ugly. Since there were no plows, the ice was terrible. It was possible to still get around but it took some thought. One of the important things to do when the ice is on the hills is to avoid the hills. Evidently that is not taught in basic drivers education in this part of the world. I lived on a hill and marveled at the number of people that thought the way to handle a steep and ice covered surface is to start at the bottom and try to power up the hill. Spinning wheels and no traction are not evidence of lack of ability to climb a hill to the novice snow driver. I marveled at the number of people that tried and tried and could not be deterred. There was one old beat up old Ford Taurus that tried and tried and then slipped and hit a car parked on the hill. Then it tried again. I wondered why they did not go one block south to the flatter, much traveled hill that was bare and dry and passable. Again, I don't always understand.
My favorite snow story comes from being down by Pike Place. We have a street that has a steep slope of no less than 45 degrees. There was a gent in a Mercedes that tried to climb the ice and snow covered street. He made it half way up before his very expensive car began to slide backwards. His car door flung open and he jumped out and tried to hold the car on the hill. His valiant effort was for naught, as the car slid down and struck many similar and expensive cars that were in it's path. It was a sad sight.
I have thought over the years about that man. I guess as humans we keep trying. We get an idea into our heads and we just keep at it. I think about Edison and his light bulb efforts. They tried hundreds and hundreds of different elements and substances to make a filament. There was so much failure but finally a good result. I think about the people that tried to fly and those that send man to the moon.
M-E has exhibited that spirit. She keeps going through all of this. She is determined and keeps her spirits up. I think about all the kids that have tried and succeeded to fight this disease and those that have failed. They all were troopers. You always hear about the kids that succeed and the ones the don't . There are no stories about quitters. I hope that we are not trying to climb a hill that is too steep in bad conditions. I think that we have a better vehicle for the journey. A tank, a HumV or more importantly, the knowledge about how to find the right hills to climb.
Friday, February 11, 2005
She has been acting like the dog that punishes you for leaving it outside. She ignores me, trys to tell me she does not care that I am home and then cries at night that I was not there for dinner. I remember saying the same things to my dad. I never had to say them to my mom.
I want to be a good Mom but I also have to be a provider. I wish I only had one pair of shoes to fill.
We are almost 6 months into this process. We will continue. We have no choice. We are too far out on a limb to turn back.
One step at a time. One day at a time. One hour at a time.
Sunday, February 06, 2005
Evidently the variety has attacted a new bird. We had a Peregrine Falcon stop by for a visit. We must have some plump pigeons. I can not imagine one landing so close to the ground but there it sat. In the tree. It sat for awhile. The bird world went silent. I had shrike flash backs but the visit was only momentary and not productive for the Falcon. It did a lot to scare the birds and squirrels. They fled for a long time. They did not come in groups for a number of hours.
They finally did return and are back to their usual eating habits.
We have a lot of peregrine Falcons circling our world right now. Some just come and rest for a bit and are a bother. Some are more persistent and circle from way up high. They are the thing that makes are always just a bit tense. When will they dive and attach. Will we have the strength to fight them off? Will the world be safe after a long wait. Will there be any relief from the pressure of knowing they are there?
M-E has been fighting a cold. She has been just miserable. She has a good ANC right now due to the steroids she was on for a week. They gave her a good ANC but made her very emotional and cravings for things like Tim's Potato Chips and Onion Dip have been out of control. We are just keeping a wary eye on that hawk.
The most ominous raptor right now is the Bald Eagle that is follows her everywhere. She gets no relief from the flapping of it's wings and that swooshing sound it makes as it dives. DRESSING CHANGES: In mid December she had a new PICC line put in and it was placed in her upper arm on the inside. The skin there is very tender and there have been a number of problems with the dressings. They use something called Tegaderm to cover the insertion site. Tegaderm is like really dense plastic with lots of adhesive on it. It is impermeable to anything like moisture or bacteria. It is great until it is time to remove it. We have tried everything. She has finally decided she is ready for a Port. A Port is something that is placed under the skin and can be accessed with a needle and allows them to draw blood and give her chemo and fluids when she needs it. When it is not accessed, she can swim and do lots of stuff like take a real bath or a shower.
She has to have her PIIC dressing changed once a week. She is scheduled for today. She has made herself sick over the change and is so anxious that she slept with me last night and was crying for hours. I just don't know what to do. All of her anxiety and fear and frustration in live has been focused on this one issue.
We will go and do the dressing change today. We will work on what we have to do tomorrow. She is very wary, like the birds that know the hawk has made a visit. She won't land at the feeder until she knows the coast is clear.
Saturday, February 05, 2005
I have a million people that want my attention and they feel neglected. I have been beating myself up for not being able to meet everyone's need and wants. I realize that they are mad and it makes me sad but this last six months has taught me a few things. One is that I can handle a lot but not everything. I have limits and I have to focus on one thing at a time or I end up with no focus. I have never had a 10 day trial. They are virtually unheard of if there are no custody issues. I can handle my daughter's illness and a trial or my daughter's illness and a lots of little tasks. I can not do all three.
So I sit here and look around. I wonder, how long has that glass been sitting there? When did I last do the laundry? When did the daffodils bloom. Who forgot to pay the power bill? When did that letter come? When was that message left on the phone? When did I last light a candle and say a real prayer? Did I send the picture to my sister of M-E and Sadie for the medicine man to study? How can the cat food be all gone? Oh, dear how long has it been since I seached the bowels of the refridgerator for science experiments? When did I last laugh with my daughter? or have a meal that was not perfuntory?
Fortunately, we are through the worst. The reinforcements are coming. The schedule at work is do able. Next week will be a whirl wind but managable. It is good to have a moment to breath.
Thursday, February 03, 2005
This is a form of prayer and meditation for me. To think that someone thinks I should not be given ten minutes a day is painful. I have been keeping so many balls in the air for so long. Everyone says that I should take care of myself. What a great idea. I should go to the gym or for long walks. I am happy if I get to go to the store for a loaf of bread. I find it more important to try and keep my sense of humor and find hope in Mary-Elizabeth's illness and struggle.
I have to go now. I have to get ready for day 9 of the arbitration that has involved all my attention. I will be able to be more attentive to everyone and everything next week.
Tuesday, February 01, 2005
I am amazed at their progression. I loved that they all are so supportive of each other and positive on the team. They have really grown under the guidance of Jerry Verhoff and John Claeys. Jerry has been M-E's coach from the beginning. He is a great coach in that he has the deep desire to win that comes from his mid-west roots but he knows what is really important. He is a great teacher. I remember when he was so upset three or four years ago when the score was 42 to 6 or something that bad. I sat next to him and told him that anyone can be happy when they win, he had the ability to have a chance to teach them how to be okay when they lost. He is always positive and always a great teacher. I brushed the sadness away as I sat and watched M-E cheer on her team. She so wants to be a part of her old life.
We are making a new life. The old when life gives you lemons......... We are doing okay. We started a new round of chemo yesterday. It look like it might not be too bad this time. I am hoping for good results and not too many side affects. The hair is going to go but the new stuff is very soft and an not the right color. We will have to see what comes next time.
We have colds all a round. M-E and I are both hacking. I am still in my trial. It has been a time when I don't have time to sneeze.
Back to the hospital. M-E could not have her spinal tap yesterday so we are off to try again.