Saturday, January 29, 2005
It is so hard to explain how sitting and listening can be a tiring process. I realized yesterday after we wrapped up the final question that I had been clinching my jaw for most of the week. I am tired in a way that soldiers must feel when they stand for hours information. Today I am just sitting in front of my computer shopping on e-bay for pieces for M-E's North Pole Village. Don't ask me why? Do we need it, no. Do we have room to display it, no. Can we afford it, maybe. What am I doing? I am just crawling into a little world full of mindless frosty elves and candy canes. The rest of my brain is on neutral. I don't seem to be capable of doing much else at this point in time. I may have to give up E-Bay for lent.
M-E and I are going to try and make the best of this week-end. She is hungry and her hair is growing back in nicely. She is ready in many ways for the next two months.
We are headed back to the icky treatment. 60 or so days. Lots of new oral chemo and a cytoxon overnight and the Ara-C. I have no way to tell how she is going to handle this. I am hoping that she has gained enough strength to start this again. She so seldom complains or whines about much. She does such a good job at being positive and trying to have stiff upper chin. I try to follow her example. I wish I was more sucessful.
Houses across the street update: They are covered with red pieces of red paper. I think the term is "They have been red tagged" I think that is bad. They are both roofed and some trim has gone on. They are going to be cute. I suggested Mom and dad should buy both and put a breeze way between them. We could have a way for Sadie to go back and forth.
Well, I am going to go and join my daughter in some down time. I am looking forward to not thinking about work for a day. Who would have ever thougtht that a day at the hosptital would feel like a break?
Thursday, January 27, 2005
I am a very grateful daughter. I am at the age that many of my contemporaries have lots their parents and I have seen the pain and anguish in their eyes. They try to be brave and are very accepting of their deaths and last illnesses but there is that deep deep sadness that comes from the loss. Our parents are such beacons in our lives. They brought us into this world and taught us how to manage our lives and love and how to move forward. They created issues for therapy and gave us siblings and did too much or not enough but all in all they did their best.
My dad had us prepared for the worst. He knows too much and if you add what my sister knows and all of on the internet looking for what we think we know, we were ready for the bad news. In this case it did not come. We escaped. We get more time and we get to relax and focus on other things. In my world, that is Mary-Elizabeth.
We continue to have a good week. I am sorry that I have this big trial going on but I do get a week-end with her or at least part of it.
I know that prayer comes in lots of forms. Thank-you for all of your prayers and thoughts and kind words.
Wednesday, January 26, 2005
Good news is that Mom may be able to come back. Gifts come at the best time.
Speaking of gifts, we received such a thoughtful one the other day. Gary, sweet, sweet Gary, wanted to give blood in M-E's name. He found out that direct donation is not possible but sent her a card and let her know what he had done. She said, mom I don't need it right now but I know that someone does. She truly appreciated the donation.
Monday, January 24, 2005
I recieved a letter from Dad today. I would have cherished it forever. I don't think I will cherish it any less now that we know he does not have cancer. He is a very wonderful and wise man. He always knows just the right thing to say but that is a father's job.
Mary-Elizabeth is trying to negate the life estate she gave dad in Sadie.
We are all going to sleep better tonight, knowing that this wave will not be dragging us into the sea of sad good byes- Yet.
Sunday, January 23, 2005
That panic came from another part of my brain, the more primitive part that let's us know the Saber Tooth Tiger should be avoided at all cost. I have felt that bit of panic before and I remember those times very distinctly. Once was when the King Dome was blown up. We went early to the office to watch. Lots of people were there and we had a perfect view. We watched and waited and then we could see the small explosions that ran up the spines of the supports and then the inevitable and expected collapse. What brought the panic was the cloud of dust that the explosion created and the sight of people running away, in a panic. We knew we were safe and the cloud would not reach us but the sight was enough to create fear and a raised heart rate. I am sure all the victims in the Indian Ocean had the same reaction but their fears were realized.
I also have great respect and some fear of "Big Water". I was floating the Boise River one hot afternoon and our group became separated. I was in the middle of the river and tried to stop and stand up and wait for the our group. I tried and tried and realized that even though the river was only 12 to 18 inches deep, it was powerful in it's collective movement. I had to get to shore in order to accomplish my goal. I was very taken aback by that realization of it's power. It was so deceptive.
I am running from a big cloud of dust and the big waves and trying to get out of the strong current right now. Intellectually I know that there are many many fears that should be put away with logical and reasoned thinking. But there is this little bit of primitive panic in the base of my brain. It sits there like the Saber Tooth Tiger, ready to pounce when least expected.
I just feel impending disaster all the time on the edges of my life. It does not take much to throw the whole thing out of kilter. I do feel the waves and waves of good thoughts and prayers and know the whole community is doing what it can to help us maintain and stand up in the current. I know that we will make it safely to the shore and be able to stand and move on. It is the getting there that is sometime so hard.
Thanks for all your help in our efforts. I do believe in the collective power of the positive and it's affect on the universe. We will arrive some day.
Saturday, January 22, 2005
I hate to let my guard down. I have done that before and then been side swiped. I also want to enjoy the good moments. I guess it is a balance game we play. Maybe we play it all the time as parents. Moms forget the pain associated with child birth as soon as they hold the child. Parents continue to take their children to the store even if there is an unholy tantrum one bad afternoon. Dads melt when there little girls smile that endearing smile and ask for something more.
Maybe we have short memories. Maybe we are just a very hopeful and forward looking species. I just know that I am looking forward to this day.
Friday, January 21, 2005
He sounded very happy, his only complaint was that Mom would not stop and buy him a cigar. See, it is not my fault.
We are not out of the woods yet but the timber is not so thick.
Thursday, January 20, 2005
We are waiting for the biopsy results. Dad had the biopsy on Tuesday and had no complications. He is scheduled to have some sort of surgery on Monday of next week. (That would be on the second day of my 10 day arbitration.) I am co-council and my real part doesn't come until the end but then it is still stressful and difficult and not fun.
We have three possibilities at this point in time. We have the removal of the lesion only. A little section would be taken out. We have the removal of the entire lower lobe. We have the chemo and radiation route if the nodes are positive. So we wait. Three possibilities and two good options. So we wait. Did I mention we are waiting?
Every time I receive a phone call I assume it is bad news. If I am a bit jumpy and I have been so distracted. I have some good reasons for my bad behavior. I did not even know that today was the inauguration. How could I have missed that bit of news? I know they have shut down DC like a war zone, I know they have been selling expensive tickets for all the festivities. I know that the Ritz Carlton has a package for two for $150,000.00 but that is the end of my knowledge.
This realization made me realize I probably owe some people an apology. If I have not been as good of a friend or communicator, I am sorry. I hate to let people down. I hate to not be the best person I can be in the world. I hate not paying attention to important things. I hate doing the wrong thing. I hate when people ascribe hurtful motives to my behavior. I have been so focused on "What Now" I have let things slip. I will try to be better.
I keep thinking things will settle down and we will get back to life as we knew it. I am beginning to realize that "What Now" will always be in our lives and we have to find a new definition of normal. We are on a path not taken by many and every journey is different. "What Now" is probably in lots of people's past, current or future. We have all had a visit from him or her. I guess we have to take the new friend with a grain of salt and try to fit them into our lives without ignoring or destroying our old lives and relationships. The fact is, 'What Now" and her cousin "What Next" are here for a while. I guess it is time to put them on the e-mail and Christmas list.
Monday, January 17, 2005
Keep us in your prayers.
Oh, the tresses for the houses arrived. They are not going up three stories, only two. I snooped around. Two bedrooms on the main floor, one upstairs. I would say they have about 1500 square feet of living space. I love my little house!!!!!!!!
We are ready for the week with what ever challenges that come. I feel a bit battered like the houses across the street. They are dark, and wet and not much to look at right now. I can see their potential for the future. We all will arrive at that happy, light and well constructed place again soon.
Sunday, January 16, 2005
So thus began the "Get us out of here!!!!" Rant and rave. We now have it down. First fluids, fast fast fluids, then the negotiation for more than 4 units of Zofran IV. Like I went through all of this for 4 units. Then the always necessary explanation to the new baby resident that her liver function tests are not something that requires an immediate transplant, rather we are in great shape when the tests are viewed from the Hem/Onc world. Oh, well, I don't want every pediatrician to have a detailed working knowledge of lukemia in any of it's forms. No one should have to go through this process let alone more than the 3000 kids who are diagnosed each year.
We did make it home. M-E was mad at me for pushing so hard. I knew she would sleep so much better in her own bed. Home is such a haven. Thank God we get to return to our little bit of Ballard every night. The most we have to negotiate would be the cat's demands.
We are hoping for a better week. We are hoping for no more Methotrexate. We are hoping for school. We are always hoping for a miracle.
Saturday, January 15, 2005
I looked out the window this morning and the entire family was present. Mom, Dad and Baby Flicker. They come and hang on the suet feeders. Each taking a turn, each watching out for the other. Since the big holly trees across the street are gone they are more visible. They like to hang on the telephone poles across the street. They work their way up and down with ease. I am surprised that Baby is still here. They are not a flock kind of bird. Not like the sparrows or the Oregon Junkos that appear enmass all the time. We might have more than three but that is the most ever spotted at one time.
The Flickers are a very nice little family. They provide us color, variety and parenting tips like let Baby eat second. Not first nor last, but second. Approach your destination in stages, always be on lookout for danger, stick together and keep an eye on each other and keep close. I am incorporating all those things right now.
I need to eat first or sometimes that does not happen and I get short tempered. Try everything to stay out of the hospital; approach it carefully. Keep vigilant, make sure the meds and fluids and everything is taken care of on a daily basis. Make sure there is time for lots of hugs and close contact.
Friday, January 14, 2005
This made me smile and remember what a great thing it is to have a child, even one that is unhappy and hurting right now.
Talk about sticker shock! That doesn't even touch college tuition.
But $160,140 isn't so bad if you break it down. It translates into
$8,896.66 a year, $741.38 a month, or $171.08 a week. That's a mere
$24.24 a day!
Just over a dollar an hour.
Still, you might think the best financial advice is don't have children if you want to be "rich." Actually, it is just the opposite.
What do you get for your $160,140?
Naming rights. First, middle, and last!
Glimpses of God every day.
Giggles... under the covers every night.
More love than your heart can hold.
Butterfly kisses and Velcro hugs.
Endless wonder over rocks, ants, clouds, and warm cookies.
A hand to hold, usually covered with jelly or chocolate.
A partner for blowing bubbles, flying kites, building sandcastles, and skipping down the sidewalk in the pouring rain.
Someone to laugh yourself silly with, no matter what the boss said or how your stocks performed that day.
For $160,140, you never have to grow up.
You get to finger-paint, carve pumpkins, play hide-and-seek, catch lightning bugs, and never stop believing in Santa Claus.
You have an excuse to keep reading the Adventures of Piglet and Pooh, watching Saturday morning cartoons, going to Disney movies, and wishing on stars.
You get to frame rainbows, hearts, and flow! ers under refrigerator magnets and collect spray painted noodle wreaths for Christmas, hand prints set in clay for Mother's Day, and cards with backward letters for Father's Day.
For $160,140, there is no greater bang for your buck. You get to be a hero just for retrieving a Frisbee off the garage roof, taking the training wheels off a bike, removing a splinter, filling a wading pool, coaxing a wad of gum out of bangs, and coaching a baseball team that never wins but always gets treated to ice cream regardless.
You get a front row seat to history to witness the first step, first word, first bra, first date, and first time behind the wheel.
You get to be immortal.
You get another branch added to your family tree, and if you're lucky, a long list of limbs in your obituary called grandchildren and great grandchildren.
You get an education in psychology, nursing, criminal justice, communications, and human sexuality that no college can match.
In the eyes of a child, you rank right up there under God. You have all the power to heal a boo-boo, scare away the monsters under the bed, patch a broken heart, police a slumber party, ground them forever, and love them without limits, so . . . one day they will, like you, love without counting the cost.
This reminded me that there were lots and lots of good times.
In a few minutes I am going to call Ana and she will come over and I will go spend a day at work. It will be good to get back into the office.
Dad is having a biopsy on the 18th of January. (Belle's birthday) They are looking at the lymphnodes and the we will see what happens after that time. Belle and Karen will be flying to Portland today and going to Eugene tomorrow. Dad when to Piccadilly last week and sold lots of stuff. He was very happy. He reminded me that the arrangement is that Alex gets all the stuff in garage and that he plans to empty part of the garage before he gets it. I so love my practical and realistic parents. They (who every they are) say that as parents we are sort of done teaching lessons to our children when they around the age of 14. Kids have their values and life expectations pretty much set and we can sort of sit back and watch.
I realize either I am a slow learner or I am not 14 yet or I have extraordinary parents that have continued to impart important lessons for the last 50 years. I see some new lessons on the horizon. As difficult as this time has been and seem will continue to be, I know I have the ability to make it through. Like I tell my client, it will be okay, it might not be fun but it will be okay.
Wednesday, January 12, 2005
I am having to recall all my best parenting skills and try to to keep from going off the deep end but it is not easy. This time " Interim Maintenance " was portrayed as a time of healing and feeling better and being able to get back on an even keel. Gaining a little weight, having some good counts, all of those things. This has been the time fevers and mouth sores and anxiety and surgery and just plain icky stuff. For some reason it does not make me feel better to know that the sores will heal more rapidly because her ANC is good. I guess we have to take what consolation we can. My biggest concern right now is that she her numbers are not good and she will be very miserable for a while. Jello and Guava nectar are our new friends.
I had looked forward to this as a chance to remember what was at the end of the tunnel. I am not liking this part of the tunnel.
Well, I should be taking her to school right now for some time to work on school. I think the reality is that I will go take my shower and fight like a banshee to get her to the hospital. Say some extra prayers to the universe. It is going to be a long day.
Oh, houses across the street are getting their stairs built today. My neighbors will like that they don't have to climb ladders to inspect. Second story was framed on one yesterday. It is reassuring that the 12 year old builders do look at the plans some of the time. They are putting this building together board by board. It is kid of interesting. I think I know where the Fridge is to go. They won't get a very big one but then it might be a closet. Opps, there is a problem with the plans, I see a change order coming........
They will tower over the neighborhood. I hope they are cute. I wonder if we get to pick out the outside colors. I could have fun with that part!
Tuesday, January 11, 2005
If there is surgery that is really a good thing. That means there has not been any spreading to the lymph nodes. If the first step is chemo it is an okay thing.
I have been reluctant to put much on the Blog so we could try and tell as many people as possible. I just don't have the time I used to talk with everyone. I feel like I have withdrawn from the world and am not able to be a good communicator as I once was. I want everyone to know that I do appreciate all the good thoughts and prayers and meals and calls that go unanswered and cards and gifts that come our way. They are not being sucked into a blackhole but rather are appreciated and valued.
M-E is having a hard time for a lot of reasons,one being she just is feeling punky. Her last dose of Methotrexate has been brutal. Her Grandma not being able to be here has been very difficult. My upcoming multi day trial/arbitration is a not helping. I hope that this morning goes better. I am not even going to try and get her up until 7:45 a.m. That extra hour of sleep seems to help.
The outside walls for the first floor are up. I would say that when I come home today there will be walls for story two. Right now they look little and not cute. I am hoping for cute.
This will not make my day. I think the Lanham/Sierra family has really had enough for a year or even a life time. But then maybe life times are made up of unending gain and losses. Dad has mentioned in his letters that Mary-E will be teaching us alot. Maybe she is going through this to teach my dad about how to deal with Chemo and Cancer.
I don't even want to think about it. But then maybe knowing is better than not knowing. Maybe having a chance to say good-bye is better than not saying good-bye and then maybe this is a really big test for all of us. I could begin to develope test anxiety really really soon.
Friday, January 07, 2005
Case in point: Today. We spent most of yesterday at the hospital. Blood draw, dressing change, visit with the doctors, additional blood draw, chemo, IV's and home. 6 hours. I had planned for that part of the day. I can get a lot of reading done as long as there is no real content. People magazine is a good distraction. We came home and M-E seemed pretty chipper. We managed the administration of drugs in such a way that she was a bit queasy but able to drink and eat yesterday. She wanted apples and ate two of them. That was major.
What I did not anticipate was this morning. I expected her to hop out of bed and be ready to go to school. When I looked at her after her 12 hours of sleep and she was not even moving , I was faced with the fact that I was wrong. She is wiped out.
What alternate universe do I inhabit that makes me think we were back on a normal schedule. I was figuring that we would pop up out of bed and barring no snow, there would be a trip to school, and I would head to work and clear my office and work on lots of stuff and make all my clients very very happy. WRONG, WRONG, WRONG............................... The reality is that no dose of chemo results in the same reaction. Because each dose is greater than the last each is harder on her body. I am beginning to understand the concept of going "To Toxicity".
Toxcity is not a new store or a music group. It is a major test for your body. It is a test of your liver and your kidneys. Can they take it? when will they say enough? How sick does she have to get before they scream uncle! We won't know if triple the starting dose will be too much until the 18th when we try again and push a litte more and try to find where the wall really is. I guess Hem/Onc doctors are a bit like 3 year olds seeing really how close they can get to the candles before they really really burn.
I was just given the reminder that my daughter has cancer and she is being treated with very powerful and scary drugs. She is sick this morning and my expectations of getting us up and out the door made her anxious and concerned.
Time to change that plan. I am so easily lulled into the "we are getting back to normal" mode. I I can not believe I am that silly. She has settled down and she is back to sleep on the couch. She is under a quilt made for her by the St. Matthews Quilt group. A beautiful purple healing quilt.
A quilt that has dark and light colors through out. She can rest now for awhile. I will make a couple of phone calls and will work on getting someone to be here tomorrow so I can work.
I have to keep myself calm and keep from getting upset. I hate to disapoint the people that depend me. I am a responsible and capable person that does what I say I am going to do. Right now I am a person that needs to make fewer promises and lower the expectations I have of what I should be doing. One step at a time. One hour at a time.
Evidently I still have a lot to learn. I would like to think I have learned a lot but evidenlty there is more for me to learn. I just hate that!
The houses across the street are up one story. Lots of nail guns and hammers and more glue than makes me comfortable. It makes me wonder. I suppose it is like making hot dogs. You don't ever really want to see what goes into the process.
Thursday, January 06, 2005
When first asked, people figure that being beautiful means looking like a movie star. Although when you take the time to think, beauty is much deeper than that. I'd like to tell you about one of my close friends, Mary-Elizabeth. Mary-Elizabeth (called MEB), was diagnosed with leukemia this past summer. When I heard the news, I was struck with shock. A few days later, when MEB didn't have any treatments going on, I went to visit her and the surrounding were hard for me to take in. There were so many sick children. I thought God, how can anybody deserve this or how can this be your plan for anyone. When I got to MEB'S room, she had such an upbeat attitude and was so confident in herself that she could get through all the treatments and come out on top. To me, when a girl has confidence in herself, especially in a tough situation like MEB's, she is no doubt about it, beautiful. People like Mary-Elizabeth, make me view the world in a different light. I become more aware of the tragedies going on in the world around us and I'm much more grateful for the things that I have. When someone can make you change your way of thinking that, itself, is a beautiful quality. Mary-Elizabeth has chosen to shave her hair, rather than let it fall out. I admire her because of her bravery, which again is beautiful. MEB is looking ahead to the future with a positive attitude. I admire MEB so much because she fits perfectly with my definition of beautiful. Everyone needs a role model and MEB has become mine. I hope that my piece on Mary-Elizabeth has inspired you and helped you think of the definition of beautiful differently.
By Lauren Byrne age 13.
We have been so busy dealing with all the Chemo and treatments that we loose sight of what this is doing to all those around us. It seem so much like this is happening to just our family. I feel like we just are inside of this swirl of activity and most times there is no extra energy to reach out to those who care and who have continued to care for and about us.
After reading the essay, I took a moment and called Lauren and thanked her for her thoughtfulness. I know it is not much but it was something I could do. I realized that every simple thing we do for someone else does have a big impact.
Thanks Lauren and everyone else that has shown us a some kindness.
Wednesday, January 05, 2005
I am working and getting ready for a big trial. I have lots to do and that feels good. I have to deal with some things today but life is manageable.
M-E is being retrieved from school on an almost daily basis by Ana and Isabel. M-E is doing lots of make-up time with her dad and loving every moment. She is learning turn her irritation of not knowing into good humored teasing with her father about his poor memory. Mary-Elizabeth is settling into her new discovery. All-in-All it is a good thing.
We know there will be more waves, big crashing painful waves but we live on the Pacific Rim and we have a warning system. We get side swiped every now and then because this Likumia thing is a very strange and insidious disease. I worry that I will never stop worrying about a relapse. I don't know if I will ever believe she is healthy. I find that I worry the most when she burrows into her bed and only wants to listen to my TV from her room. When she can get out of bed and is grumpy and surely I feel so much better. I love now when she mouths off to me a bit and gets sassy. Maybe the chemo and radiation and weeks of no food are going to not take my child away from me.
I realize how much I want to believe she will be better. I am so willing to flip back to the "Everything is okay" mode. I like that part of the universe so much better. As parents we all worry about our children. No one is ever prepared for how much we love them the moment we find out they exist. No matter how hard I try, I don't think I could ever be okay again if she did not beat this disease. All the good thoughts in the world, all the candles, all the loving prayers and support from the entire world would never fill the hole in my heart.
I know there can be a sneaker waves out but we will deal with those when they come. Right now we will be thankful for a good time and pray for all of those that did not expect a wave on Christmas Morning.
Tuesday, January 04, 2005
Work was not too bad. I feel like I have lots to do but then that is good. I am trying to keep a good attitude and not be too stressed. Breathing is my newest option. I am trying to do a bit of that on a regular basis. One file at a time. One breath at a time. One project at a time.
I have started to just throw the paper away again. I had better stop it. Just know that if it does not show up in People Magazine, I will not know about it. The earthquake and Tsunami is just so sad. I can not wrap my mind around the events.
How many times have you heard "life will go on". It is so so true. No matter what happens, people seem to have the ability to move forward and continue. Survival is such a basic part of our being. I see M-E continue with things that are very difficult and she does it with such courage and with a sense of humor. She walked into school yesterday with a smile and no hair. She talks about her cancer like it is just another little bump in the road. She is very matter of fact about many things. I am so proud of her.
Dad has said that she will teach us all many many lessons. I truly believe she is a very old wise spirit.
Sunday, January 02, 2005
Mom has been the laundry fairy and so I am trying to do some loads. I have issues. Let's face it. It don't love doing it, I don't feel a sense of accomplishment when it is done I know it just grows. I will try to have a better attitude.
I had a dream last night about being back in the hospital and seeing a stellers jay land by the window. I strained to look out the window and saw a baskted attached to the wall full of blue flowers. I saw tucked into the basket a small blue bird the color of the flowers. I hope it is a good sign not just a Rose Bowl Parade flashback. I am hoping we have somethings that are beautiful to look forward to this next year.
We need a break, a chance to process, some time to not worry about everything. I need to take time and change the filter on the furnace.