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Alexis' Blog

March 4, 2008
Name: Gary  
Subject: Update March 4, 2008
Message:
 Dear Friends and Family of Alexis:

Well, we’re beginning the fourth week into this saga, and much has been accomplished, and there is much to be grateful for.

When Alexis was discharged from the hospital with barely 24 hours notice, we knew that she was not going to have her bone flap put back on due to the persistent swelling. Upon her discharge, they were recommending hiring twelve hour a day attendants, all kinds of speech , physical, and occupational therapists, and frankly, I was more than a little intimidated with the idea of being responsible for having my sister who just had brain surgery, who didn’t have her skull bone intact, come and live with me so soon.

But within a day, it was clear to us that she was completely fine. And I mean completely. Yes, she’s tired, and recovering from a horrific intrusive surgery. But.... she has NO NOTICEABLE results from the surgery! As far as we’re concerned, it’s the first of many miracles we hope to see in the coming months.

What I didn’t know is that I’d turn out to be the major beneficiary here, as she’s industriously rearranging my refrigerator, my linen closets, my food stores, and basically straightening anything that is appears out of order, which is basically everything, given that I just moved last October. Thanks to Alexis, my home never felt this organized and clean before!

We went for a mile and a half walk the other day, and she was fine. More than fine, actually.

Friends have been bringing over meals, and it’s been so wonderful. Thank you all.

Trudie, Laurinda, and Bennet have been amazing, and there every step of the way. Gen has given up her bedroom for these weeks, and for those of you who remember what it’s like to be a 16 year old teenager, that’s huge. Space away from the world is an essential survival component, and Gen has been amazing in her willingness to support her Aunt Alexis. And Pearl, God bless her, has been evolving through this, from devastation and shock, to shoring up her considerable reserves, to being fully there for Alexis. In fact, last night she apparently had an epiphany, one that assured her that Alexis is going to be fine, and that negative thinking was a thing of the past. No more catastrophic thinking for Pearl. (May it be so, God, May it be so!)

Thank God for David Dedlow, who accompanied Alexis, me, and Pearl to the UCSF Brain Tumor Center last week, apparently one of the finest in the land. It as a four hour adventure, and we were given all the details of the clinical trials that, remarkably, Alexis was eligible for. We all could not hear any down side, or negative side effects with the extra recommended drug they were including in the conventional care of chemo and radiation, so we signed up on the spot. It all felt rather fortuitous, frankly, like is was all a gift that we were lucky enough to be living near this extraordinary place.

Granted, hearing all the stats, and the prognosis for this virulent cancer was so difficult to wrap our heads around that when we got home at about 5 PM, we crashed. Soul numbing is this kind of experience, where you have to hear and accept the odds that exist with this awful Glioblastus Multiformi cancer cell, while knowing in your bones that there are most assuredly such things as miracles.

We all have to remember that Alexis is unique, entirely capable of beating this, somehow. My dear friend, the world class oncologist Jeremy Geffen ( who wrote THE JOURNEY THROUGH CANCER) says that true healing is “focused action and intention wrapped in the arms of surrender”. So the truth of this is that we’re going to do everything we possibly can, knowing ultimately that we’re not in control, and we must see that this whole situation is wrapped in the arms of surrender. And so, we proceed on this adventure, this mystery that will reveal itself as it unfolds.

Challenges ahead: I have to leave town on the 7th, as I’m giving the opening keynote presentation for the Association of Professional Chaplains, as well as offering a program there as well. I’ll be in Pittsburg, and then in Philadelphia meeting with some potential investors in my Wisdom of the World project that I’m currently securing funding for, my labor of love business venture. I’ll be back on the 14th, and therefore NOT able to be there when she starts Chemo and Radiation, which I have mixed feeling about.

Thankfully, our sister in Law, Helen , will be coming to support Alexis during her first week, along with Trudie, Laurinda, and Mom. We’ll need some meals that week, and the hard part will be to not bother Alexis with coordinating who’s bringing what, and when. So if you’re interested in bringing over a meal, or seeing Alexis, please leave a message with Trudie London, (415) 459 4461) and Trudie will attempt to orchestrate her schedule around all the many doctors appointments she will have.

Please keep in mind the first week of Radiation and Chemo is likely to be greatly tiring, and filled with possible surprises that we hope will not be too daunting. Please do not leave messages for Alexis on my home line, as I’ll be needing that while on the road, checking for messages.

If you want to leave a message for Alexis, leave it on her home line at 415 499 1306. If you want to send letters and cards, she loves them. Send them to either my home at 31 Corte Ortega, #14, Greenbrae, Ca. 94904, or her home where Pearl Lives at 10 Jeannette Prandi Way, # 2103, San Rafael, Ca. 94903.

And of course, your prayers, and love mean everything to us.

You will be able to connect with her website at some point. For now, we have lovingalexis.blogspot.com until the real one comes up.

There you’ll be able to add comments, I believe.

Thanks for everything...mostly your love.

All the best,

Gary

Posted by FriendsofAlexis at 11:03 PM
February 22, 2008
Name: Gary  
Subject: Written February 22, 2008
Message:
 Dear Friends:

Twelve days have passed since my sister Alexis was brought into the hospital - when a catscan revealed a brain tumor.

For those of you who have not yet heard, she had the tumor removed after a seven hour surgery on Sunday the 10th of February, and it was designated as a virulent cancer, 95% of which was removed from the right side of her brain. I know. Intense.

Funny, it feels like it’s been a year, for all of us, most of all Alexis.

Since we’ve all be in shock, and learning each day how to adjust to this situation, let’s look at what we have to be grateful for. It might sound corny, but when you’re in a situation like this, it’s a survival strategy. What we’ve been told, however, is that we do have a lot to be grateful for, actually.

First of all, what we’ve learned is that many people do not emerge seriously unscathed from a surgery this invasive. Most people who have a surgery that goes this deeply into the brain have had problems speaking, walking, and negotiating life in the most simple of circumstances after a surgery of this magnitude.

Our beloved Alexis, probably because of the sturdy Russian stock she’s come from, has NONE of these symptoms. She’s remarkable. Although all the therapists were extremely cautious, advising us that she should have an ‘attendant’ present at all times, I have to say, all evidence indicates that they’ve got her wrong.

She’s careful and cautious, extremely aware of the fact that part of her skull bone is missing, which, if she falls, is capable of causing a brain damaging catastrophre. Therefore, someone is recommended to be with her here at all times,which we will be doing. (She’s definitely ready for some visits, around all the therapists who will be coming to work with her. Not sure how to schedule it all, but keep posted. Meals are mostly what’s needed, as we just don’t have it in us to cook. Soups are great. Salads are wonderful.)

That being said, she’s herself COMPLETELY, allbeit a bit slowed down.

So, first thing we have to be grateful for is that she could have been so much worse, as if having been hit by a truck. Now, we only FEEL like WE were hit by a truck, as does she, but she’s doing incredibly well. She can talk, walk, read, and smile. We’re working on laughing, which is being represented by some strange excuse of a laugh that is meant to bookmark things until her real laugh comes back. But we’re hoping, once the swelling goes down, she’ll be able to laugh as she normally does, and also do more things that don’t require someone present by her all the time. Like walking outside. (And Driving, for example, which is graduate school at this point.)

For those of you who don’t know, she’s at my apartment right now, was discharged from the Marin General Hospital yesterday, the 21st of February. The steroids are making her feel crazy, and hungry all the time, and probably preventing her from getting a good nights sleep, but she’s happy to no longer have IV’s sticking out of her arm, and glad to be near family.

I’m very tired, so I’m going to take the day off tomorrow, Saturday, and ask for Friends and my mom to help out. But you can mail letters to her at my address, for the next week or so, at 31 Corte Ortega, #143, Greenbrae, Ca. 94904. You can also email me at the above email. We’re also setting up a blog/email address so people can send their love and prayers.....something like lovingalexis.com. (Alexis’ official address, which is the same as Pearl’s, is 10 Jeannette Prandi Way, #2301, San Rafael, CA. 94903. Pearl’s phone number is 415 479 2883, and she’s doing a lot better now....and could definitely use a hug, a meal, or a friend whenever it strikes you to reach out to her. )

So...next hurdles:
Deciding if we are going to go through with the experimental trials at UCSF – we meet with the very top oncologist there on Tuesday!
Deciding how much caregiving she really needs
When the swelling will go down so that they can replace the bone flap, which will enable her to start radiation treatments. (we meet with the surgeon on Wednesday!)
Working to extend her insurance coverage (thanks Bennet and Trudy for staying on this!)
Learning how to relax, relax, relax and take things nice and easy.

She sends her love to everyone and expresses her gratitude for all the outpouring of love she has received.

We’ll try to keep the updates on the website from now on, once it’s set up.

We’re a bit overrun with calls, but if you have to call, you can call my cell at 415 233 2994. Please do not call the home unless it’s important, as too many calls get things a bit crazy here. But if you’re wondering what you can do, and might have the wherewithall to make a meal one night, let us know!

Thanks again,

Gary
February 20, 2008
Name: Gary  
Subject: Do You Remember Who You Are?
Message:
 Written February 20, 2008

Dear Friends:

In light of the last twelve days, my sister has had to endure the unthinkable: A brain tumor, brain surgery, a formidable cancer prognosis, and an uncertain future ahead as we explore all of our options.

If there ever was a time where Being Here Now is not only a recommendation, it’s a prescription for survival for all of us.

The attached song, (posted to this site) offered in dedication to my sister, comforts me when I sing it. A lot. I wrote the song last summer, and made this simple demo a few weeks ago, not knowing that it would be such a comfort to me, and most importantly, to her. And hopefully to you.

How can we love someone as much as we can love anyone in this world, and still find some way to be at peace to let go and let God have His way with us?

This is where the rubber meets the road isn’t it?

We will be relying on the kindness and love of friends for the next months.

I guess even more so, in times such as this.

Please hold my sister Alexis in your hearts and prayers as she heals from the surgery and rebuilds her strength, her life, her health. And if you could also say a prayer for my Mom, Pearl, who is having such a hard time watching her daughter go through all this.

My whole family and Alexis’ group of friends are all showing up incredibly (broken hearts and all)....but...we’re also placing ourselves in the primordial soup that will grow our wings out of the chrysalis state, into a way of being that believes in miracles without question, that can face these challenges before us with strength and steadfastness, and that can endure what is ahead, no matter what, with honor, faith, hope and resilience. That’s who we are. That’s what we can come to remember, when we spread our wings, most of all Alexis.

May this song be a comfort to you, as it is to me.

Thank you for sending your love.

Love,

Gary

PS Soon there will be a website, www.lovingalexis.com, where people will be able to learn how things are progressing.

Posted by FriendsofAlexis at 12:19 AM 0 comments
Tuesday, February 19, 2008
Update 2/18/08

Dear Beloveds of Alexis:

It's Monday, President's Day, and it's hard to remember what day of the week it is. We're eight days into this enormous mountain we're climbing, and there's a long distance more to climb.

But let's look at what we have to be grateful for, first.

Given that a tumor larger than a golfball was removed from Alexis' right side of her brain, apparently we're to be incredibly comforted that she is still the same person as when she went it, not withstanding the amount of grief she has to process that this has occurred. Needless to say, none of us saw this coming, least of all Alexis. So, today, when I took her out in the wheelchair to get some treasured sunshine, we counted our blessings.

She could talk. She could walk. She can smile, if a bit crooked, but we're told as the nerve endings heal, that will come back. And she can feel gratitude for the people in her life that love her, that reach out to her, that are willing to come and be present with her. All these things, we are learning, are incredible blessings, given that the chances are, with surgery such as this, that it's not at all assumed that her faculties would be available afterwards.

So, we're grateful for that, and she is too, even though the process of acclamating to this news, and these circumstances is mind boggling.

It matters that people call apparently, but I'm the one that is asking that people call the Nurses Station, (Surgical 4th Floor West) to see if she's sleeping, or if it's okay for her to take a call, so she can get needed rest when she is finally ready to rest.

The swelling on her brain has been so much that we've had to wait longer than we hoped to to put the skull bone flap back, attaching it back to its rightful place. She'll get that surgery in a few days, possibly as soon as Wednesday, and then after she heals from that surgery, not sure how long, we'll assess whether or not she needs to go into Rehab.

If she does, she'll do that, and from there, we're thinking that I'll convert my small office in my 3 bedroom apartment to a place that she can live during the 6 planned weeks of Chemo and Radiation. I'm going to be out of town offering a keynote in Pittsburgh from the 7th, till the 14th, so Steven is thinking of coming up during that week.

We're also needing to schedule one on one shifts for her, as she often feels lonely, and abandoned when people don't show up. Apparently, the part of the brain that's affected is the part that gets sated, because it's nearly impossible to get her to like her food, and to find music that works.

We're also concerned about the health insurance situation, as her health insurance runs out in a few months. But we're taking this one day at a time, literally, and we have a good friend that's currently looking into extending her COBRA plan.

Thank you for all your love and prayers. We all are living in that parallel universe where the prognosis is scary, but the belief in miracles is required, and absolutely something we all must believe in.

There are plans afoot for a lovingalexis.com website, which we'll tell you about. Also other possible strategies. She wants to be well enough to visit Bali somehow in the summer, and we're thinking of establishing a fund for that.

For now, please avoid calling me for updates, as it's impossible to respond to all the calls. But if you want to leave me a message, call my home during normal hours at 415 461 4488.

And for urgent calls, you can call me on my cell at 415 233 2994.

Sending love during these challenging times,

Gary

Posted by FriendsofAlexis at 11:30 AM
February 19, 2008
Name: Gary  
Subject: Update 2/18
Message:
 Dear Beloveds of Alexis:

It's Monday, President's Day, and it's hard to remember what day of the week it is. We're eight days into this enormous mountain we're climbing, and there's a long distance more to climb.

But let's look at what we have to be grateful for, first.

Given that a tumor larger than a golfball was removed from Alexis' right side of her brain, apparently we're to be incredibly comforted that she is still the same person as when she went it, not withstanding the amount of grief she has to process that this has occurred. Needless to say, none of us saw this coming, least of all Alexis. So, today, when I took her out in the wheelchair to get some treasured sunshine, we counted our blessings.

She could talk. She could walk. She can smile, if a bit crooked, but we're told as the nerve endings heal, that will come back. And she can feel gratitude for the people in her life that love her, that reach out to her, that are willing to come and be present with her. All these things, we are learning, are incredible blessings, given that the chances are, with surgery such as this, that it's not at all assumed that her faculties would be available afterwards.

So, we're grateful for that, and she is too, even though the process of acclamating to this news, and these circumstances is mind boggling.

It matters that people call apparently, but I'm the one that is asking that people call the Nurses Station, (Surgical 4th Floor West) to see if she's sleeping, or if it's okay for her to take a call, so she can get needed rest when she is finally ready to rest.

The swelling on her brain has been so much that we've had to wait longer than we hoped to to put the skull bone flap back, attaching it back to its rightful place. She'll get that surgery in a few days, possibly as soon as Wednesday, and then after she heals from that surgery, not sure how long, we'll assess whether or not she needs to go into Rehab.

If she does, she'll do that, and from there, we're thinking that I'll convert my small office in my 3 bedroom apartment to a place that she can live during the 6 planned weeks of Chemo and Radiation. I'm going to be out of town offering a keynote in Pittsburgh from the 7th, till the 14th, so Steven is thinking of coming up during that week.

We're also needing to schedule one on one shifts for her, as she often feels lonely, and abandoned when people don't show up. Apparently, the part of the brain that's affected is the part that gets sated, because it's nearly impossible to get her to like her food, and to find music that works.

We're also concerned about the health insurance situation, as her health insurance runs out in a few months. But we're taking this one day at a time, literally, and we have a good friend that's currently looking into extending her COBRA plan.

Thank you for all your love and prayers. We all are living in that parallel universe where the prognosis is scary, but the belief in miracles is required, and absolutely something we all must believe in.

There are plans afoot for a lovingalexis.com website, which we'll tell you about. Also other possible strategies. She wants to be well enough to visit Bali somehow in the summer, and we're thinking of establishing a fund for that.

For now, please avoid calling me for updates, as it's impossible to respond to all the calls. But if you want to leave me a message, call my home during normal hours at 415 461 4488.

And for urgent calls, you can call me on my cell at 415 233 2994.

Sending love during these challenging times,

Gary

Posted by FriendsofAlexis at 11:30 AM

 

 

 

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