Windows and the choices they give us.

Yesterday was cold and clear and beautiful. God was trying to make up for the snow dump on Wednesday. As I left the office I looked south and saw menacing clouds slowing creeping over the horizon. Our systems often sneak up from that direction. As I looked north I could see endless blue sky and a few wisps of clouds that would color nicely at the sun left for the day.

At that moment I decided to take the clear and sunny view as my view of the universe.

Some People Just Don't Get It

Every single day, I am thankful to the bottom of my toes that I am still a mother and that Mary-Elizabeth is still alive and relatively unscathed. She is grumpy and sleeping and leaves my shoes on the steps so I can trip. She expects to be fed and nurtured and demands attention. She was so so mad at me today because I told her she was not taking a car with her to college. She was huffy and left the car after announcing that "She was not going to discuss this with me."

We had never discussed this before. But it must be time.

All in all I would not miss a day of all this time. The moods, the expectations, the disappointments, the laughter, the tears.

Children's asked for a contribution. This is what I wrote last fall.

A Bit Removed from Treatment



Mary-Elizabeth’s story has been said, told and retold. We went to the eye doctor where he found swollen optic nerves. After many other appointments to detect the cause over two months we arrived fully into the "Cancer World" and all of its glory: side-affects, puking, fights with the insurance company and bottles of pills equal to mortgage payments. I want to talk about time away from the "Cancer World". It is a place that many people forget exists. Life after cancer is as jolting as life in cancer treatment. Cancer is like air, it is always there. Every sneeze, bump, bloody nose, strange look, craving, headache, bump, rash or anything else you can think about is the dreaded "RELAPSE". Every news story about a famous person that now is fighting the good fight again is gut wrenching. Time does make it better with each day being a little bit better than the last. Mary-Elizabeth went to bed by 7:30 every night during treatment. It took about six months or more of being off of treatment but she started to stay up later and later. She is now 15 months off treatment and is staying up until 11:00 p.m. doing homework. When she first ended treatment she was barely able to walk the dogs down the block and had to use the elevator at school. Now she takes all the stairs at Holy Names and does crew five nights a week. This fall she will row in three regattas! I realize that we have very gradually arrived back to "normal". It is more of a life similar to pre-cancer where it feels safer and healthier. It is a place where I can now plan to cook Thanksgiving Dinner this holiday and know it will happen. I also realize that I had unrealistic expectations about how long it would be before we arrived in this new place. In our experience for every two months of treatment, it took a month to really recover. She was in treatment for 30 months and we are 15 months away from it. Time in the "Cancer World" makes you appreciate so much about life, health and most of all “normal".
What does Children's mean to you, your child and your family?
Returning a phone call and hearing: “Hem/Onc Garcia here” is never good. It is not what any parent wants to hear, but having returned the phone call to Children’s was the best part of the call. I truly believed my daughter would survive treatment and would go on to live a good life after. I don’t know if I would have survived the process anywhere else but Seattle Children’s. To me Children’s is sort of medical department store with its labs, psychiatry, ophthalmology, dentistry, radiology and physical therapy all on site. There was no need to do more than take an elevator or find a new hall way to get between appointments. We only had to leave the main campus once for an appointment and that was for 12 doses of spinal cranial radiation. The Schedulers took care of making all of scheduling all of Mary-Elizabeth’s appointments and if there was a problem, they would solve it. The staff always took care of transferring records and x-rays between clinics and appointments so I never had to. Children’s is runs so well and they are so careful to make sure the patients come first. We had the luxury of having the same doctors and nurses throughout her entire treatment. They welcomed us with understanding, compassion and hints on where to find good coffee. Each cancer patient has a nurse practitioner and ours was Karyn Brundige. She was never rushed, always listened and worked with us on making cancer treatment palatable. Never can I say enough about the people, the care and the support we felt while there. Mary-Elizabeth is off treatment and she now seeks treatment for ordinary things from her primary care doctor. She loves him but we always look for an excuse to return to Children's instead.

This college thing is not scientific

We were able to find University of Portland and have directions to lots of other schools. If you don't leave the house with maps and directions, it is possible to not make good progress. M-E met one of her classmates at the University of Portland and the place is warm, inviting, people friendly, the guys passed my tests. Next time we will do a real tour and visit. She did score a sweatshirt, hooded of course.

She was sleeping both times we past St. Martins so that will have to wait. She will not even be looking at the University of Oregon. They are just too mean. We went to a couple of hockey games. The final was between Oregon and Washington. The players were a bit aggressive and very mean. The fans left something to be desired. She was not impressed.

So the search continues......;

So this is how it begins.

First you have to find the college and then you have to pay for it. I am going to let Mary-Elizabeth shop and I am going to work on the financing. Right now I am sorting through lots and lots of web sites and foundations for cancer survivors. Most are open to mostly everyone; some are just for certain counties in Maryland.

So the hunt begins for schools and scholarships. It is nice to have a goal that does not require waiting on the result from a blood draw.

A Friday the 13th is Coming

I should ignore it so I am going to take my daughter and head to look at colleges. I will not worry, I will not fret, I will not be concerned in any possible way. On the list this trip, University of Portland and St. Martins. Maybe a quick peak at the U of O.

See I am not worried. I am just g0ing to go and have a good time.

So now we enter "Long Term Follow-up"

I guess it sort of goes like this. A whole round of tests including an new Eco Cardiogram. Lovely type of test, very easy, non-evasive, fast and THE most expensive single test we have done and an fairly regular basis. Blood tests, lots of extras like Thyroid and Lipids and....... Then we sit down with our new Karen (not to be confused with our old Karyn) and are give the book. The book contains the whole story to date, all the treatments, number of doses, the whole nine yards. The best part is the "What to Look For" sections. When we have this I will see what it has to say. This is the FINE PRINT.

We aren't going until March so I should be in quite a stew before then.
I think I need to go to the Library. I need to read the biography of the Georgiana, Duchess of Devonshire. I watched the movie last night and need to know more.

The Inaguration

Loved it. Grandmother would have been appalled by the day dress but would have approved of ball gown. It has been a week. I'm not sure things have changed but there seems to be some movement towards some good things happening, eventually.

It has taken a long long time to get from being 3/5ths of a human to being President. I don't think we can last that long to work on some basic issues but then we shall see.

TREE UPDATE

All the ornaments and lights are off. Trying to make it out the door next.

College

I am not certain why just thinking about sending my child to college makes me giddy. I am surrounded by people full of anxiety and concern.

What school?
What Program?
How will it be paid for?
Will horrible and deadly things happen while she is there?
Will she be sucessful?
Will she have a good time?
Will she find those dear and lasting life long friends like I did?
How do we help her through those first few months?
Will anyone accept her?
Do I have to go on the big "college tour"

I just can not hop on that anxiety wagon. This is what I know.

Finals are next week.
Some great school she want to go to will take her.
The money will come from somewhere.
She will make great friends and have a good time.
She will be homesick but will handle it.\

But what I really know is that she will be going. I am more than content and satisfied with the fact that she will be
GOING

We Survived the snow and bitter cold

Said the very small humming bird

Let It Snow,...... Great in a Song Not so much in Reality

Snow, Ice, no wind, still have power. The Anna's Humming bird is still coming to the feeder. The feeder comes in every night and then is taken back out in the A.M. They feed on insects and nector. I think I m am curently the only port in the storm.

Tucker loves it and so does Sadie. She just gets very very cold and objects to the snow balls that form between her toes. I too object to snow falling in my boots when I forget to wear socks in them.

Will Christmas Come if the Tree is not up and the Stockings Hung?

I hope not! I don't seem to be ready.

We Survived but I realized we never get to go back to Normal World

Once here, we never get to leave. It is okay, it is just what it is. While almost two years have passed since the last dose and the last surgery and the last..... But we are on a very very long tether but a tether just the same. We are sort of like birds at the zoo that are allowed to fly free for awhile. Sometimes they even leave for a couple of days but eventually they have to go back to the zoo.

We shall settle in to bits and pieces of freedom.

An Election to Remember and a dress to Forget

A little more blue on the map. A new president elect. Cute kids, nice suit and a bizarre dress. I should explain that Grandmother Foster was the first Mr. Blackwell. She had a very specific sense of dress and style and propriety. She would shop at the Cresent in Spokane and each suit would have matching accessories and shoes. At some point in time there were even matching hats. I don't remember if Grandmother was political in any specific way but I so recall her on going commentary political dress.

1.Ronald Regan always looked presidential. His suits and ties and shirts passed the test.

2. Nancy Regan was given kudos for buying matching china for the White House. Now the fact it was Lenox was okay but Rosehthal would have been better or Royal Doulton but then buying American is preferred.


3. No president should be called Jimmy and certainly not carry his own suit bag! What was he thinking.

4. No First Lady should recycle an inauguration gown. Did Roslyn Carter not know it would be going to the Smithsonian?

Grandma would not be pleased with the purple dress with plastic flowers, the red and black number or the weird Shrugs she has been wearing.

I think she would have been pleased with the election results.

Different kinds of Family

There are lots of reasons to spend time with all the kinds of family that we seem to gather. There are the kind we are born to, the kind we gather at different stages of our lives and the ones we find while in a crisis, like our Leukemia family. But when it is all said and done, it is the kind of family that love and support us that turns out to be the best.

It is also good to spend time with family so years of from now we can gather and answer the question: What is Grampa John pouring from this container?

It just gets better all the time.

I am always amazed when the alarm goes off at 5:00 a.m. on a Sunday morning. We are out the door at 5:30 after fixing coffee and walking and feeding the dogs. We arrive at the boat house before 6:00 a.m. and I don't fall and kill myself wandering around Gas Works park in total darkness.

She still smiles before racing a 4500 k. They came in 4th but only 7 seconds behind the third boat.

Light the Night

Mary-Elizabeth does not feel like a survivor. Every time she sort of does something happens like a cold or a bruise or a weird head ache. This years goal is to make her feel like a survivor. So on September 20th we are doing the walk. All the way around Green Lake. It is a great event.

Come join us and lets see if we can't help her understand that she had done IT!!!!!!

The link I have put here will take you to the information and donation page. I want the team to raise at least $1313.13. I want that number not be a good number and not a bad.
http://www.active.com/donate/ltnWA-AK/2302_MebsMom

The Healing Power of Crew

Over the years I have walked the path around Green Lake with my daughter. Every now and then there would be a high school regatta. The kids would be rowing and talking and hanging out. The parents would be feeding them, cheering and huddling in small groups. There were would be boats and races starting and lots of noise. It was a great feeling to see all of these dedicated people. As we continued our walk, I asked Mary-Elizabeth if she would be interested in rowing. She thought it looked like fun.
Mary-Elizabeth was just 10 when I made a few calls and discovered Crew is 12 to 18 year old sport. Given the age limitations, she was signed up to begin Crew fall of 2004. Mary-Elizabeth and her best friend Whitney were going to start rowing together.
Sometimes things don’t always work out as planned. Instead of rowing, we entered “Cancer World” upon Mary-Elizabeth’s diagnosis of High Risk Acute Lymphoblastic Leukemia late summer 2004. While she could not row, she was able to watch the regatta’s, wear the sweatshirt Whitney bought her and wait until she could become part of a team.

Mary-Elizabeth tried to take a rowing camp the summer of 2006. She was still taking daily chemo and in treatment. But it was a way to try and row for a bit and see if she could do it at all. She did okay until the second week when somehow she sprained her ankle getting out of the boat. Go figure. She began her long career riding in the launch with the coach. It was the first glimpse into the way Lake Union Crew/Holy Name Crew program was going to handle her illness and eventual recovery. They did not skip a beat. If she could not row, she could ride. If she could not run, she could do a core work out. If she could not do stairs she could lift weights.
Fall of freshman year she was not able to go more than one day a week. In the spring, she went two days a week. She was able to row off and on during the summer of 2007. In the fall of 2007, her participation increased to three days a week and finally four in spring. Her last couple of weeks, she did five days a week and then was able to row for the first time in competition.

It was a long long struggle for her to regain her health. While her treatment officially ended in December of 2006, the side effects of 30 months of treatment, hundreds of doses of chemo, dozens of spinal taps, bone marrow aspirations, port placements and removals and 12 doses of spinal cranial radiation, took its toll. She was exhausted and worn out. She had lost her balance, flexibility in her ankles and calves; she had issues with her strength and coordination. She was a mess. She was cancer free but there were times I wondered: “ At what cost?””

Oh more than one occasion, I had a child in tears. Her sense of accomplishment would evaporate after a simple cold would keep away from crew for 10 days. While she might have been half way up the ladder, she found herself more than half way back down. On so many occasions, her level of loss of wellness was overwhelming. She would climb into the car after practice and be exhausted and upset and simply mad at her body for not being more reliable. There were times she wanted to quit: to give up, to let the cancer take just one more thing away from her.

Sometimes she was able to go out on the water. Sometimes she did not want to go near it, it seemed too daunting. She seemed to know how much strength she had or in most cases did not have. She simply did not want to be seen as a quitter; she is not the type to give up on something once it is started. I could tell the days she rowed. Whether or not it was a good “row” or a bad, it did something for her like nothing else. Maybe it was the endorphins, or the comoratory or the moist air or the sudden waves that splash from Lake Union into the boat. Maybe it was the sense of accomplishment in climbing into a boat, a launching from the dock and those first few strokes. It was s0mething and it kept her going back. But rowing on occasion was not quite enough.
Crew is about racing and competition. Sometimes with yourself, but definitely against Green Lake Crew or Mount Baker or Sammamish. It is the reason for all those cold windy wet work-outs. It is the reason to sit at an Erg and pull endlessly. It is the reason for all the sweats, and sport bras, and special expensive shorts and waterproof jackets. Competition is the main reason there is high school rowing.
At some point in the spring of 2008, I decided it needed to become the reason Mary-Elizabeth rowed. It was time for the maiden race. The chance to find out what it meant to look down that long course and realize the boat had to come together and cross the line before all the others.

“You are going to race this SPRING!!!!!!”
“But I am not READY, I will let everyone down!!!!!!!!!!!!!!!!!!!!”
“I don’t care; you need to get in a boat and ROW”
“I am not ready for Green Lake.”
“Then make sure you are ready for Brentwood.”
“OKAY but I hate you,”
“That’s all right. You are supposed to hate me.”

So down the racing path she went. She worked so hard to be ready for Brentwood. All the anticipation, all the working with her teammates, all the planning and then……. The cold. Mary-Elizabeth does not become sick more often than other children, she just stays sicker longer. In this case, longer was the operative word. A week before the race she started to get sick and despite all my best efforts, she did exactly what she was afraid of doing. She let her boat down, her coaches down, herself down. Despite feeling miserable she traveled to Brentwood, she cheered, she slept on the floor, she rigged boats and she psychied herself up for Regional’s.

After much trial and error and moving around: Starboard to Port, and then to Starboard again. An eight than a four and then an eight and finally a four. She was ready. Her coach double checked to see if she would be healthy, her teammates asked. I let her coach know that boat gifts were purchased and she was rowing no matter what. We were all going to pretend this was a normal event and there were no questions to be asked.

On the morning of the race the anxiety was peaking. Now this is a child that is sure she is going to fail at every single task she undertakes. It does not matter what level of expertise she has. She is going to mess it up.

“Mom no one thinks we are going to do well. I just hope we are not last.”
“Of course you are going to be last. In fact the race after you will overtake you and you will lose that race also.” She has suffered from a great amount of performance anxiety since treatment and it was intense. My sister the Child Physiatrist told me to just agree with her. So I do.

Mary-Elizabeth scowled and laughed then went to meet with her coach and started out. They rowed to the end of the lake, more than 2000 meters away. After awhile, someone said “Here they come.” Slowly they came up the lake. Sun shining, oars glittering in the water, long smooth strokes, not in first, not in second and defiantly not last. As they neared we began to realize they were going to medal. They were going to be at least third, maybe second. They were not going to last…….. I realized I had held my breath for almost the entire race; I must have cared a bit.

Third it was. Medal and all. She came ashore, put on her medal and had a smile. That “I did it smile”. I had the “I told you so smile” Secretly I was so relieved I had been right.” So grateful that we had arrived at this point in time and health for her. It was a step, a concrete piece of evidence that the Leukemia had not won.
As we drove home from Lake Vancouver and before she dozed off for a long well earned nap she said. “Mom, I never felt like that before. I looked down the course and saw how far it was. I realized what we had to do. I also felt the adrenaline and knew we could do it. I have finally found a good use for my anxiety and adrenaline.”
Crew. It has been a healing journey. At every turn, she was encouraged, pushed, cajoled, harangued, nudged, coaxed and then encouraged some more. Her boat mates treated her like she was normal. Her coaches watched for signs of fatigue. They all made sure she made positive steps each day, week and month. Have a place to go, a chance to be with a team. A group of peers to work-out with on a daily basis. A time to forget lots of recent limitations. Crew enabled her to know she could be successful. She could gain strength bit by bit. She could be competitive and not have to give in to all the years of treatment.

The power of crew is more than in the stroke.

Went To Idaho, Loved it, Came Home

Crew Started on 8-18-08,
School Started 8-25-08
My Hillary Hoodie became obsolete on 8-28-08. I think one of my Idaho Cousins has it and will not even tell me.
It might be my brother's birthday.
I have to go pick up laundry soap and I don't do laundry
I spent a week leaning to be a mediator. Now there is training I could have used about 100 years ago.

I floated a river and lived to tell about it. Floating is not the right word.

Life is grand.

The Bird is on the Nest still

This is not the where the bird is but is just a great picture of Central Idaho as you head out of the canyon by the Payette river and head toward Donnelly and McCall

A robin built a nest on top of your trellis. I noticed on the 4th of July. Soon there after she began to sit. She has been there way way too long in bird world but still seems to have eggs. We have seen no blue bits of shell or heard any noise of demanding babys. She is also still not diving at us.

M-E suggested that she was perhaps a single mom that had not had the 'Birds and the Bees " discussion.

I checked a couple of times and she was gone yesterday. I was surprised that it made me sad to have her gone. I was looking forward to watching her raise this family. I had already planned to make sure we don't mess with her nest this fall when we deal with the grapes.

But I checked this morning and she is back. We shall see.