Thursday, February 14, 2008

Valentine's day update & Lance Armstrong manifesto

Happy Valentine's Day everyone--John certainly feels the love that comes from all of you. And so do I. Thank you. He would like me to tell you about three amazing valentine's gifts before we get back to the blow by blow here at the hospital.

On Tuesday, Jim Thatcher and Glenda Sims came here and spent the day hanging out with John--joking and talking shop, and he found it delightful. Sharron Rush had initiated the following proclamation from the Lance Armstrong Foundation. Jim read it to him (photo to follow in separate post I'll need help to attach) and Glenda hung the poster on our hospital room wall. As Sharron said, "The Manifesto was signed by dozens of the amazing people who work at the Lance Armstrong Foundation."

We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength.
Knowledge is power.
Attitude is everything.
This is the Lance Armstrong Foundation.
We kick in the moment you're diagnosed.We help you accept the tears. Acknowledge the rage.We believe in your right to live without pain.We believe in information. Not pity.And in straight, open talk about cancer.With husbands, wives and partners. With kids, friends and neighbors. And the people you live with, work with, cry and laugh with.This is no time to pull punches.You're in the fight of your life.We're about the hard stuff.Like finding the nerve to ask for a second opinion.And a third, or a fourth, if that's what it takes.We're about getting smart about clinical trials.And if it comes to it, being in control of how your life ends.It's your life. You will have it your way.We're about the practical stuff.Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.It's knowing your rights.It's your life.Take no prisoners.We're about the fight.We're your champion on Capitol Hill. Your advocate with the healthcare system. Your sponsor in the research labs.And we know the fight never ends.Cancer may leave your body, but it never leaves your life.This is the Lance Armstrong Foundation.Founded and inspired by one of the toughest cancer survivors on the planet.LIVESTRONG

Two other amazing gifts--one, an intense, pink-toned, compassionate, gorgeous painting of John by Christine Gilbert that she made for an Austin art show opening today--And the other, wonderful photos of Dillon who is living with Diane Colvard and Jack McKinney. With Diane's help later today I will send you the photo of Jim giving John the manifesto, a photo of the pink portrait, and one of the photos of Dillon.

Re: John's health and life at the hospital: This week has been great and frustrating and scary and OK and boring and still full of mystery. I will list some of the things that have happened and are evolving:
-John's pneumonia apears to be way better--oxygenation is better and cough looser
-Speech is still slurred quite a bit
-John is very alert, answers questions readily, and cracks a lot of jokes!
-The muscles in the right side of the face appears weaker than left (this is consistent with right arm and right leg weaker). Dr. F said that the lesions in the brain appeared on other MRIs to be very near facial nerve affecting muscles
-We learned that fungal or any other matter growing or dying in the brain can create a "stroke-like" effect
-John has had a lot of pain on the right side of his neck and been given various pain medications for it (including morphine), sometimes to no avail-- and then sometimes it's better
-MRIs of lower face, neck and spine will be done today
-No results yet from bronchoscopy--they will be culturing things for 8 weeks but some results should be available soon
-EEG--brain waves were totally normal
-Sinus infection has created pressure on right ear
-Blood pressures are more normal now than they've been 9 months or so
-Postural hypotension (plummeting blood pressures upon standing) is better
-John is weak when walking and hasn't been allowed to walk much for fear he will fall
-He did take a walk yesterday with physical therapist
-He will be walking regularly with PT person
-Spinal tap scheduled for Monday never happened and MRI scheduled for Tuesday never happened--all of these things were delayed, scheduling fumbled, etc. We have been sitting around waiting for these tests, and in some cases, doctors' visits, etc. and it's been quite frustrating
-Neurology team seems to be now very focused on seeing what's going on with the facial muscle issue
-Dr. Forman was very attentive in calling me on my cellphone last night after I emailed him with John's symptoms. I walked into nurse's station area with speakerphone on and we could all discuss the situation.
-Dr. F is a very compassionate doctor and asked me to give John a special hug and kiss for Valentine's Day!

And to you, pass along hugs and kisses from us.
Love, Anna and John


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