Hubris

Remember reading all those Greek Dramas and the long discussions about Hubris and the fates that befall those that think they can control their world and figure things out. Well they were right. There is no control or any reason to believe we mere mortals have any control over our lives or those that are near and dear to us.

We have been smug... Or more accurately, I have been smug. I think I know how the systems work, I can maneuver through the medical crap like that irritating guy on the small motor cycle during rush hour.

Then the E-Mail comes: WE NEED YOU TO COME BACK IN FOR SOME MORE BLOOD WORK. THERE APPEARS TO BE A CHANGE IN SOME OF THE VALUES THAT LEAD US TO BELIEVE.......

The word choices are very specific:

Need to come back. Not You might want to drop by the lab sometime in the next month or so....

It appears that 12 doses of Spinal Cranial Radiation did not make her thyroid very happy. It seems to have been a slow but expected death. Unless the blood work shows some other auto-immune issue- it will be very treatable. Thyroid pills for the rest of her life. Joy, Joy.

We talked about it last night and I told her that she should not expect more than her fair share of long term side affects and that I thought 3 would be enough thank you very much.

So......... Off to the lab for a fasting blood draw.

The photo is of Grandma Armstrong Lanham. She was a stong willed women that fought her way through life. She seemed to be an approriate person to be on guard.

Yes They are goingg to Be Seniors and That is a great thing!!!

Okay, lets be very clear here.

1. We are not losing our children.

In fact I bet for everyone that is upset that their child is a senior will be complaining in 5 years that they have moved back home and are leaving their shoes every where. They are always going to be our children.

2. They will return home less but won't love us less.

Sure when they come home they are going to need to reconnect with friends, they will stay out late, they will not share what they are doing and they won't honor curfews. They love coming home, they expect it to be the same. Just ask any parent that dared to change a room or God forbid move.

3. They were never ours in the first place.

If we wanted them to stay with you forever, you should be remained that slavery has not been legal in the county for a long time and then refer to number one.

4. Be thankful that they can leave the nest.

I remember sitting in a hospital room at Children's Hospital and looking out my window. I could see St. Joe's spire and Holy Name's Dome. I just looked out that window and prayed and pleading and hoped that she would be able to go from St. Joe's to Holy Names.

Each and every step, and milestone and moment that marks her journey to Independence is a gift and proof there is a God and while she has a very wicked sense of humor, she answers prayers, pleading, threats.

Instead of worrying about what it is going to be like to not have an obnoxious, self important, teenager in the house, use this year to re-discover your life BC (before child). It has been waiting for your return.

The Real Story of Gastrocnemius Recession Recovery

Now we have a new problem. She is walking, sort of like a penguin but as tippy as a clown blow up boxing thing. She can fall flat in a second. Seems kind of funny. She did a ton yesterday so there were some pain and discomfort last night. Seems to be doing better now but now the word of the week is moderation. So first I complain she is not walking, now I complain she is walking too much.

No, I am never satisfied If we had been satisfied we would have been sitting around the camp fire in caves. It is important to want to make things better.

Thank God She does not have Avvascular Necrosis

Survivor Issues: Avascular Necrosis (AVN)
Avascular necrosis is a condition characterized by cell death in bones caused by a compromised blood supply to the bone. Advanced cases show bone collapse in the affected joint. AVN can be caused by high-dose steroids and radiation treatment. It is usually seen in the first year off treatment; adolescent girls are most susceptible.
The hip bone is the most common site for AVN, knee, shoulder and other joints can also be affected.
Also known as:
osteonecrosis (ON); ischemic necrosis of bone; aseptic necrosis; osteochondritis dissecans
Description of AVN
Merck manual
Signs and Symptoms
The symptoms of AVN vary; in general, the symptoms include pain and loss of movement in the affected joint. Some patients have intense, incapacitating pain, others experience tolerable pain and little loss of movement.
Diagnosis
According to the Merck Manual, "Early diagnosis requires a high index of suspicion in patients presenting with pain, particularly of the hips, knees, or shoulders." In other words, unless the physicians suspect AVN, they will not find it. An MRI is the most sensitive test for AVN; x-rays might not show AVN until it has progressed to the point of bone collapse.
Treatment
Cortical bone grafts, core decompression (the central portion of the bone is removed to reduce pressure), osteotomy (a wedge of the bone is removed), and hip (or knee) replacement.

I bet they never told me that was a posibility!!!!!

Tomorrow we have an appointment to see Dr. Mankey and have the stitches taken out. I offered to take them out for her and she refused.

One thing about spending so much time at Children's is it takes 2 nano seconds to return to a place of gratefulness......

The Real Story of Gastrocnemius Recession Recovery

Walking, we are walking, the get up and come to Mama moment happened on Friday. Day 11 we threw the walker away and began to totter around sort of like a penguin. Seemed to be a good thing. A few steps, down stairs easier than upstairs. Bruises created by placement of the incision by the top of the boot. Too much walking or sitting with feet down, bad. Feet up good.

Short distances with slow pacing seems to work okay.

I made her unload the dishwasher. As someone said, Nurse Ratchet needs to stop by every now and then.

The Real Story of Gastrocnemius Recession Recovery

Day 10: Lots of steps, only with a walker. No willingness to leave the house yet. Even for a movie. I may try movie and sushi...... I am a very very bad mother. But then we all knew that.

Senior books purchased. Need to have senior pictures taken. I am thinking that we need to have some sort of mobility and of course Tucker.

The Real Story of Recovery from a Gastrocnemius Recession

Day 9: Walking with the walker and stating
"fine go to bed, I don't need anything from anyone"

She is doing way better. When she gets mad, she is getting better.

The Real Story of Gastrocnemius Recession Recovery

So. We are now a week away from Surgery. 3 steps in the morning and about a dozen after dinner. Like I mentioned, this is not the recovery process we were expecting.

We liked the: Walk out of Surgery. Rest a bit. In tennis shoes in a couple of weeks.

I think the first part is a bit optimistic. I think the real story is:

No significant weight bearing for 5-7 days.
Stay on top of the pain.
Add visterill to the pain management program. (muscle relaxer)
First steps at day 7 or 8
Add as able.

Make sure you have a "mobility devise" at the ready and a dad to carry you into the house.
Showers are best accomplished with a hand wand device.

For the care taker. Don't get freaked about the lack of mobility. It will be okay.

The Real Story of Gastrocnemius Recession Recovery

gastrocnemius recession is commonly performed to correct an equinus contracture of the ankle that may accompany foot and ankle pathology in adults. The equinus deformity leads to excessive pressure and pain that manifests as plantar fasciitis, metatarsalgia, posterior tibial tendon insufficiency, osteoarthritis, and foot ulcers. The procedure is also performed on individuals who have limited ankle dorsiflexion.



So those are the official words. She had the surgery on Monday. This is Saturday and she is still not able to stand. We had been told that she would be able to walk out of the surgery center. That was sort of a fib. She was not even able to stand up let alone walk. The last few days have been about pain management, arm only transfers, trips to the bathroom on a scooter that was not devised for sitting and waiting.



Waiting. I am not sure that I will ever be good at waiting

I had forgotten how hard this all is

Surgery went fine. Recover is not. Oh, well there always needs to be a challenge. Everyone is sleeping. I cannot get her to walk. She transferred from one chair to another and the pain was excruciating. Now I can't get her to walk. We finally have the pain under control but she is afraid of that very bad pain again. So. I don't know the answer. We shall see.

I should never just drop by the office

It is a very bad idea when I am supposed to be on vacation. We went to visit Mom and Dad in Eugene. This A.M. in the office was supposed to be for a couple of brief meetings. I had forgotten how bad it is when I don't relax and just get away. So here I am very uptight and I am having my chain jerked by a certain medical assistant that works with a beloved doctor. Let us say, Sally does not take very well to being told how Mary-Elizabeth's medical procedures are going to be managed. Oh, I will never make the mistake of taking her out of the Seattle Children's system for as long as she can stay there.

Adult medicine is a whole new ball game and I don't play well with others. Suffice it to say, I have not killed anyone yet but will be doing so in the near future. Opps, that makes it sound pre-meditated.

She has gone to her "Dark Place"

She use to go there a lot. She does not stay as long but it is still there. Yesterday A.M. went fairly well. As she began to come out from under the happy pill, the reality of what was ahead began to sink in a bit.



I did some reading about the operation she is going to have on the 10th it is called a double endoscopic gastrocnemius recession. They go in and cut the main calf muscle, throw her in some boots for a couple of weeks and in 12 weeks she is back in the boat rowing.
Boy I hope this works......

New Age Torture

We visited Dr. Eva Young today. She is this very sweet, tiny 8 month pregnant doctor that evaluates muscle and nerve function. She has some fancy title but in essence she sticks really long needles into people and runs electric shocks into people's bodies. To make things even more fun after she puts the long pointy needle into the muscles she moves it up and down until it is just right.

Eva warned M-E that the electric shocks would feel like touching a door nob during the winter. Mary-Elizabeth wondered what kind of door nob the doctor was touching because she certainly did not ever want to be anywhere near it.

So here is what we learned. The left leg has the most nerve damage but has pretty good muscles activity. The right leg has little or no nerve damage but the tightest muscles.

Surgery is scheduled for August 10th to lengthen the calf muscles.

Who can believe we are even talking about this sort of thing. It has been almost 5 years. I am tired of all of it. But then I must remind myself that I have been given 5 more years and quit whining.

She is Off to Camp.... If she only knew

My only claim to fame as a mother of a camper is the care package I send every year. Some mothers lovingly bake cookies, find lovely treats, send notes and cards and send e-mail through the system where you pay to e-mail your child, less they forget you are still hovering over them and interfering with all of their fun. I drop my child, after being made to wait for the bus to leave, and head to China Town. I head into Owajima and spend about an hour finding a nice variety of items. Packages with little dancing fish and bears in brightly colored wrapping dancing on the surface and no food label are my favorite. I fill a box of such treasures and off it goes. I figure most of it is fed to the raccoons.

I don't ever send the really really bad stuff. I should just for fun. the picked fish heads, the toasted tiny fish skeletons and other such mysteries. It could be a fun fun package if I could imagine some sort of consumption and not just screeches from the girls.

I am just so glad she is at camp. This is her favorite thing. She is coming back to unhappy but necessary "procedures". Her summer will end August 10th. Surgery on both legs to lengthen her calf muscles. More later. It is too YUCK to think about today.

Today I am thinking about gummy weird candy that no one can identify.

Birthdays, Non Parties and other Matters

She is now 17 years old. Hard to believe. She spent her birthday with Grampa and other Grampa in Eugene. Her father and clan went for a three day visit. In ways it seemed odd to have them going to visit and not me but then in other ways it was more than fine. I was at home and doing some minor gardening projects and then took off to visit Margaret and Mary-Jane's Whidby Island cabin. (That is certainly something I intend to do more.)

I came home on Saturday to find the porch filled with boxes addressed to the birthday girl and plants that were more than happy that the marine layer was coming for a long visit. (We don't do well in 80 degree weather.)

Mary-Elizabeth came home and promptly attended her first R rated movie without adult supervision. Of course she wanted me to come give her a ride home because the "bus takes too long". Gee.....

So things on my mind. Sarah Palin.... Michael Jackson.... Minidoka Internment Camp.... What to cook for dinner. Gee... that might take too long.

The Wedding in San Diego

Wonderful, wondeful, wonderful......

We had such a great time. We love San Diego...... Time at the Zoo. Time at the University of San Diego. San Diego Mission. What more do I need to say....

The Girls are Seniors!!!!

Sliders, giggling, time with friends and family. A bit of wine (now officially a clear liquid) time to reconnect with important people.

Life is good, the backyard is clean and there is some sunshine and much needed rain coming. what can we complain about.

M-E is going to camp, being a camp counselor at Gilda's Club, "Camp Sparkel" We have a fancy wedding and them on road trip to visit colleges. Gonzaga, Whitman, College of Idaho, and them maybe U of Portland.

I suggest a trip to Shoreline Community College and she declined.

LAST DAY OF SCHOOL......

DO I NEED TO SAY MORE

First Draft the of the College Essay.

It is said that the hardest time in out lives, other then the “mid life crisis”, are the teen years. We hit puberty like a brick wall and we are stuck in the middle of the adorable sweet child, and the self reliant adult. Yes it is hard, it does not sound like fun, and most people do not want to repeat their teen years but its “normal” and part of life.
This all was taken from me when I was twelve. I was looking forward to becoming a teenager and could not grow up fast enough. However, life had a different plan for me; I was diagnosed with Leukemia the summer of ‘04. It was a shock to hear that I had to go though 2 ½ years of treatment. Part of my treatment was radiation. I was told I had to have tattoos so they could line me up precisely as to not harm me. I walked in to the waiting room of UW Medical Center on the day of my appointment, checked in and sat down in the dull waiting room with the matching vinyl chairs. There were not many people waiting, giving me time to think what the person doing the tattoos. I thought of the word “tattoo” and immediately an image of a biker man with a leather vest and tattoos all over into my head.
My name was called interrupting my thoughts. After winding through long hallways like a lab mouse, we finally enter the room. There standing in front of me was not a big burly biker man and lots of tattoos, but a short dorky man with a lab coat on and glasses too big for his face and was not what I expected. He explained to me what to expect and I was told it might “pinch” meaning “it’s going to hurt but my med school training tells me to say it will pinch to make you feel better”. By spending a lot of time at the hospital, I had learned to decode words like this and find their true meaning. They warn me they would start so I prepared for the worst. The first one was painful and I thanked God I had a high threshold for pain, but it got better as they continued. As they worked, they started talking to me. They asked about my life and I told them my story. As I did, I realized I would never have a “normal” life. At 12 I had to learn to take a lot of responsibility and learn to deal with a great burden and had to grow up in a shorter time then most girls. Most teenage girls worry about which boy likes them, who they will eat lunch with, and when they will learn to drive and here I was worrying what procedure is next, hospital times, and what side affect I would get next. I also had to become comfortable with the idea of death. I learned quickly humor was the best antidote to all this and that we can not dwell on death or fear it. I came to realize, even though it sounded crazy, I wanted to be a normal teen that had acne, had to worry about shaving their legs, and had to spend hours on her hair on a bad hair day. These little small stupid things were what I wanted to do and deal with. All this went through my head in seconds.
By that time I had leaned not to dwell on these sorts things and continued the conversation. Before I knew it, the procedure was over, and I had tattoos, which my mother gladly paid for. This is something that happens very rarely in a teenager’s life. To this day and for the rest of my life I will have these tattoos. They are a universally symbol of radiation treatment and remind me of all the things I missed from the ages of 12-14, but they also show me what I have taken from my life. It has been hard, but its one I enjoy everyday without out a doubt. I know what is important now and what to notice in my daily life. I have also accepted that “normal” is not part of who I am and I have learned that I would not be Mary-Elizabeth Sierra Lanham if I was normal.

Take Two Aleave and Call me in a Couple of Weeks.

So we went back to see the doctor. There is a thingy, ME does not want to name it. It looks like a bubble. There are also some small inflamed areas in three of the small foot joints. May be a problem, may be nothing. There is also still talk of heel cord lengthening surgery. It just makes me cringe.

A very tall woman with a thick eastern European accent drew about 6 viles of blood to see if there is anything weird going on. She had purple nail polish. I had warned M-E that there were be blood letting.

So to sum it all up. There is a thing. We are exploring all the Things it is not. M-E is pretty quiet about all of this. I am totally freaked out but then this is the first post-treatment THING we have had to deal with so maybe I am supposed to be freaked out. I am stressing eating fresh halibut and Paseo Cuban sandwiches and badly burning cookies.

So, I have been here and done that......