Sunday, December 28, 2008

We Survived the snow and bitter cold

Said the very small humming bird

Sunday, December 21, 2008

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.

Thursday, November 20, 2008

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.

Thursday, November 06, 2008

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.

Sunday, October 19, 2008

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?

Wednesday, October 08, 2008

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.

Friday, September 12, 2008

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.

Wednesday, September 10, 2008

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.

Wednesday, August 27, 2008

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.

Tuesday, July 29, 2008

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.

Sunday, July 20, 2008

She feels like everyone is dying

I picked her up at the bus yesterday. She had been to camp for 9 days with Laura Breshock. No Whitney this year. She was tired but clean. she had received a call and knew that her surrogate grandfather, Richard Davis had died after a very complicated and nasty battle with some new kind of infection.

He has been a wonderful presence in the life of Mary-Elizabeth. She felt like he was another grandpa to her. She used to go to Camp Grandma with Whitney on numerous occasions. That sort of stopped after she was diagnosed but she loved him and knew he and Louis cared endlessly about her. They brought her a huge stuffed flower when she could not have real flowers and of course the famous Road alligator. Ours appears to be stuffed, green and plush but then when you are driving along the roads of the world it would be logical that thy would be black to fit in to the environment.

He will be missed.

Friday, July 11, 2008

Thursday, June 26, 2008

Friday the 13th Trip to Idaho

We left Friday the 13th. What was I thinking. Road Trip...... We were traveling with Liz and Sopie and Elvis Fluffbucket. Their purpose was to pick up Delila Fluffbucket. We stopped at places like Mel's 24 hour dinner in Yakima. Free Pancake day. 14 hours later we arrived in Boise. (Oh, Liz would not stop at the Hungry Red Neck Cafe close to Lime Oregon. It might have been wonderful. But then we will never know. Drove through the College of Idaho and discovered the feed lot is gone and replaced with Trailer World for all your horse hauling needs.

We collapsed into bed. I was able to watch the last bit of Battle Star Galactica. My secret obsession. Then up early. Aunt Mary was first on the agenda we were able to see her. She was very weak, not really able to speak. I realized in an instant that the person I had spoken to a week before had left. We said our good byes, spent some time with Logan and the rest of the gang and headed on our way. Off to pick up the pups and then up the road to Riggins.

I guess we all return home, just like the salmon headed up to spawn. There is something deep in my soul that calls me back to those deep canyons, and angry rivers. I love the sounds and smells and the feel of pine shade, dusty yet inviting. I love to find places that know what "fry sauce" should taste like and how to put together a burger. We stopped for a bit along the Payette River. Hot, yet refreshing. Cold water that is trying to escape the canyons.

Through Cascade, McCall and then into Riggins. Population 404, two steakhouses, two bars, a grocery store, mini mart and a place where pesto was defined on the menu and a beautiful Best Western. The hotel sits on the point where the BIG SALMON meets the little salmon. Lots of fisherman, bikers, and fly catchers of the bird variety. We took a big heavy sigh and stayed for two nights.

Short visit with Cousin Mary and Barney, a trip of the Big Salmon. A roadside picnic and then a long haul home.

Those who traveled with me noted that I had a story for every bridge, had lived in every town, knew every rock and could comment on almost anything that passed before us. I completely resisted telling the story of Falling Rock.

So this is what I observed on my road trip back to Idaho this decade:

College of Idaho is smaller. The pick-up trucks are bigger. No one was wearing a Hillary for President Hoodie.

Thursday, June 19, 2008

Dear Aunt Mary

Lung Cancer. Bad Bad. Treatment, not so great but maybe it bought you some time. Please know that there are lots of things I didn't know about you and while they always appear in the obituary I wonder if they give the true picture of what a person's life means. Since I don't know your middle name or your birthday or place. Since I don't know when you were married or even how long you and Logan lived in that house on Alamo. I guess what I have to say goes like this.

You were always there when we visited Boise. I do remember another house in Oregon but for the most part it was the red brick house on the corner with the ever growing tree in the back yard. You always had coffee at hand or a number of other options. Never did you refuse entry to a gang of family, a wayward brother and his wife about to add a recently born child into their family, a group of family after a funeral, a college student, a teacher from a Dietrich, a law student, a visitor from Seattle.

You were always busy. Family, travel with Logan, work on lots of Charity things. You did the Cross Word, balanced the books, kept track of the important things in the world. You were a very ardent republican but those of us from the other side loved you anyway. You remembered everyone, loved to throw a party, a shower for a niece from Seattle. You were simply warm and gracious.

There were very big disappointments in your life but you "soldiered" on. You saw the big picture but could focus on the little important things. You did much for everyone but when an act of kindness came your way, you never forgot it.

You will have taken a lot with you. Lots of family stories, history, good old gossip. You have taken a big part of Logan's heart and soul and much of his memory. He is not very happy that you have left but he knew you needed to go.

We made it just in the nick of time to see you. I hope you knew we were there. I realized at the visit you were beyond our reach so we will reach out to Logan now. I dispatched Dad and Mom to visit. I think that was good.

Mary-Elizabeth cried when we left. Her visit to you was hard and maybe I should not have taken her. I thing that we have to teach the lessons that death is not a bad thing. It is not a fun thing for those that are left but it is not a bad thing when it is time.

It was time. Thank-you for waiting for us to stop by and say hello before your journey ended.

Thursday, May 22, 2008

Concrete Proof

In 2004, Mary-Elizabeth and Whitney were about to sign-up to begin rowing. Mary-Elizabeth never was able to start. Mary-Elizabeth has visited and watched and supported Whitney on occasion. She took a rowing camp, went to crew one day a week and then two or three and then 4 days a week. She has been very reluctant to row in a race.. She did not feel strong enough to do a 2K or even a 1.5 k race. She felt she would let down her team. She did not trust her body. She did not feel like she could face the disappointment. She would get all geared up and then..... a cold that lingered or a set of hip flexers that would disagree with the entire process. Little steps forward, big steps back.

A couple of months ago she started to question why she was rowing, was something she wanted to do or something that she was doing for me. If it was so important why was I not more involved... How would she be able to do all her homework and row next year. What if.....

Well I had a hissy fit earlier this spring and told her she had to row in at least one race. It was time to get off the fence and commit no matter what hurt or the blisters or her lungs or the fact she was not 100% recovered from __________ fill in the blank, PMS, finals, watching too many Lucy shows. Any way she was ready to do it.

She worked and was on the team and in a boat and doing well and then Belle and Karen left a little cold. Started out just feeling funky, then very tired and then a cough and then and then and then. So she was out of the boat. Her coach was less than pleased but then they see lots of potential in M-E they see how hard she works and how much she wants to succeed. She works well with other and does lots of things.

Well she didn't row at Brentwood in Canada. (I had a great time and tried local bread and cheese and bought wine from the Cowichen Tribe.) She was determined to row in Regionals in Vancouver Washington. So, lots of rest, vitamins, good meals and lots of prayer.

Off she went on the bus to Vancouver. I followed the next day. She did not row until day three but hung out, became more nervous. Fretted and worried and kvetched and did home work. It was "oh my god" hot. 105 in the shade. Then Sunday came.

I was up and out the door by 7:00 am and there was no coffee but room coffee. I arrived and helped with breakfast and other things and then we waited. Boat after boat launches. Noisy Holy Names cheering happening, boats coming down the course and the I hear the they "hot seated" No endless cheers for them. They entered the boat just as the previous group ended their race. They were off and we had nothing to do but wait.

It takes about 40 minutes from launch to start. Everyone was lined up, they headed down the course. They are more than 2000 meters away and it is hard to tell they have even started, let along what lane they are in, so where they are does not seem to even matter at that point. All you can see is a glitter and flash.

As we they were coming down the course, I was standing with a couple of more experienced mothers. I was telling them that this was M-E's first race and that she just didn't want to be last. I learned from a very small, cross wearing, medal (at least one of Our Lady of Guadalupe) that the correct term was DFL. Dead F((((( Last. .
As we watched and cheered and prayed it became very clear that they were not going to be last and then that they were going to place. I held my breath as she and her team came in third. I didn't know that a medal came with it. One of the mother's was very worried about whether or not there would be a medal. I told her I was just glad that they were not last. I later found out the her daughter was a child that really needed this sort of validation. She was very bright but did not do well socially but was determined to stick to crew. M-E had been in a boat of juniors that had never won a race. They had struggled but stuck to it.
As we drove home I asked her about the experience. She told me she had never felt anything like the adrenalin rush at the start of the race.
"Mom, I found a great use for anxiety and adrenalin."

Sunday, March 09, 2008

I Am Done with being a Leukemia Mom but we are not quite finished.

Yeah, here we are in March 2008. Silly time for a post. Well sometimes post just have to happen. I guess we are both sick to death of living in this world. We found out last week that we still have lots of left over baggage.

Life has been good. Trips to Mexico with Dad, Mom's new hip is settling in..... She is still receiving straight A's at Holy Names. The flowers are up, some gardening is happening. The dogs are good. The Sibs and Parental Units are great. Mary-Elizabeth does not seem too interested in driving... What more could we ask for???

Well, lest we forget, we were drug back to scary world for a few hours. Wednesday afternoon about 2:15 p.m. I was in a mediation. I was interrupted by a call from M-E. She was crying and in pain. She told me her stomach hurt more than ever and she had hives everywhere. I said I was on my way.

I ditched the mean people that were never going to settle and headed to the car. I tried to call Sister Dorthy but she was on the phone. Little did I know she was on the phone with 911. By the time I arrived there were two ambulances and school was letting out. The ambulances were clogging traffic and I parked in a sacred "No Parking Zone." I was immediately accosted by a the parking police who backed down when I explained the ambulances were my daughters fault.

I snuck in the back, looked for a second for the elevator and then headed up three flights of stairs. I found Sister Dorothy and my scared and sick child. She was in the presence of four cute EMT's. Her tongue had swollen and she was crying and itchy and just miserable. I intervened, and let then know that IV Benedryle was probably not the best choice and convinced them I could transport her to the hospital as well as they could. No IV, No ride in the ambulance.

I had been in contact with the Hem/Onc clinic and they were not about to let us come in. I was not worried about the stomach ache and wanted a blood draw to see if I should become a real basket case. Evidently they don' see everything as being caused by chemo and cancer like I do.

We went to emergency. They got us right in and gave her some more drugs and some Hydorzine, another form of Benedryle. They also gave some of my least favorite steroid, Dexemethozone.
She dosed, I worried, they poked and we were finally able to go home. She cried and slept and I worried.

It was clearly an allergic reaction to something. What?
we don't know. Will it come back? Maybe. Was it a fluke? Could be.

One thing we know for sure, the histamine part of her immune system is back with vengeance.