From Eric – Update for 11/26.

Howdy!

 

     Dad mentioned the other night that he’d like to go over the hill and cruise campus in his wheelchair some time, so we did that yesterday.  It was breezy and chilly and he did great.  We covered quite a bit of ground as my 4 year old rode his little bike in front of us.  Getting out to do something is great for him right now, because, as we saw in the hospital when he improved, too much time to lay there and think can be challenging.  That said, he’s not necessarily eager to go out and about while he is still gaining control over his body…  Having gotten into a good routine of getting nutrition, therapy visits, and resting since he’s been home, he is now more able to accept visitors, and we all agree that the anticipation and accomodation of a visitor is a good distractor from getting bored and depressed.  Generally, visits in the early to mid afternoon are good, and these same hours should be used to call beforehand to confirm that he and Christina are ready for you and to set a time.  I hiked the beach with Moose Saturday and we had a great visit ourselves.  One thing that came up was Moose asking me if Dad’s had lots of visitors and is it overwhelming.  I answered that my communications early in this process were really effective at keeping people away, and that now Dad’s actually needing more interaction with people.  So Moose knows to call and set up a time to go see him, Dad knows Moose will be calling, and it’s all good.  Please feel free to get in touch with Christina to set up a visit.  She will let me know if it’s getting hectic or if there are general requests of those wishing to visit, and I can relay that information here if necessary.  Dad’s been eating more, but it’s limited, and strong tastes such as chocolate, red wine, and salty foods were too strong for him – just in the last day he seems to be tolerating “strong” foods more.  If you want to bring food go for it, but don’t be upset if he doesn’t eat it.  Soon we’ll be more into the actual ‘eating again’ stage.  As for meals for Christina, I think that’s out the window because she has actually been focusing on cooking herself great meals – it’s been a good exercise in keeping her life closer to “normal” than it would be if she couldn’t do it, and Dad’s involved too as she always asks him for input on the menu.  Bring something special if you’d like, but it’s not needed as much as your company and support.

 

     I had a great talk with Christina last night.  She had mentioned that Jim Sanders complimented my writing and that he’d said it was very complimentary of her (thank you, Jim!).  This of course made her not want to read the updates!  She’s known of the nature of my writing since the beginning and has given me info to relay, but she is uncomfortable being illuminated in the light of my appreciation (and yours!), so she’s not read any of it.  This is a natural reaction, and it’s probably magnified in her, as she’s a very private person.  I’m content that she’ll read it some day, because I want her to have that validation.  I tried to coax her into accepting that praise for high moral deeds is inevitable and comes with the territory, and she is sticking with the down-played idea that “it’s not a big deal” because she loves Dad so much, is a nurse, and is fortunate enough to be able to take the time to be there for him like she has been.  If she is using that as her own coping mechanism to stay level then that’s great.  I wanted everyone’s perspectives to be honed regarding this issue, because I think it factors into any interactions that any of us will have with her and Dad.  There’s a certain precarious nature to her mood because what she’s doing IS such a big deal, and she NEEDS to maintain normalcy – high praise is an interruption.  It’s a hard but beautiful lesson:  be a selfless and pleasant person who is committed to doing the right thing and you will have that come back to you whether you like it or not when you’re in need!  They’re both experiencing that one.

 

     Thanks, everybody.

 

From Eric – Update for 11/21.

Good morning, everyone.  I have refined this distribution to go to those who responded to my last email plus a few that didn’t but I know they want to remain on the list…  If you know of anyone who wants on this new list please have them email me or just send their address to me.  If the “convenient filters” of email/IP’s have left anyone out who tried to respond I’m sorry.

 

What’s a miracle?  It’s something positive that happens unexpectedly, or at least against long odds.  What context does a miracle have when the overall status (rehabbing from the stroke, having cancer) doesn’t change much?  When change can be rapid and negative, a mirale can literally save your life…  I want to keep pondering this, because I want miracles to happen around me for the rest of my life, and I know that means there’ll be some long odds to beat at many of the crossroads.  The powers of positive thought, determination, community, and, yes, prayer are all on my mind as I consider this.  Maybe a miracle has alot more to do with validation of positive thoughts and actions than an actual phenomenon or occurence.

 

There’s been a miracle!  My Dad’s tumors have shrunk! 

 

The trip started hard for Glenn, Christina and Susie.  Wednesday and Thursday were busy with many transfers and some wild hotel stays including downtown SF.  Friday was flat out hectic, as the appointment for a PET scan at UCSF went very long causing them to be late getting back to Stanford for the 4PM consult with Dr. Hancock.  Dr. Hancock accommodated the schedule snafu, but my Dad’s BP was through the roof by the time they sat down for the appointment at 5PM – his and Christina’s anticipation of this potentially horrible meeting, and the exponential heartache brewing due to getting to it late and frazzled had them both near whit’s end.  Dr. Hancock broke the news:  the followup MRI on Thursday showed shrinkage of the tumors, and Dr. Hancock announced that they will want to move on to the Gamma-Knife procedure in “a couple of weeks.”  Here’s some really important news for your own consumption and digestion of this:  my Dad takes it all with a grain of salt.  As an observer with an (obvious) desire to understand his perspective, I believe that, whether he knows it or not, he maintains a steady and level attitude – don’t get too excited, don’t get too down.  I think it’s a coping mechanism that is vital to sanity and survival when you’re knocked off your feet like he has been.  In contrast, Christina’s reaction embodied the notion of a climax – what a buildup for her as she stayed so positive and strong for 64 long days and nights, always looking at the best possible outcome, and never letting herself lose focus on the goal of providing the best for Dad.  This news was likely to be bad – devastating really.  When it was not, she had what had to be one of the most powerful emotional reactions a person can have, and she deserved it!  Again, we’re in “wouldn’t wish it on anyone” territory, but, as with many other circumstances and developments around this tragedy, the beauty of this “reward” to her, in my mind, is a very special thing.  I’m so proud and appreciative of what Christina’s done.

 

I got this news Friday evening and felt so so humbled.  Leading up to it, all my preparation for the worst had me almost feeling guilty about having a lack of hope for the best – that all evaporated when I got the news.  I went from dreading the drive down to my Uncle’s in Santa Cruz because it would be a trip of consolation and extreme pain, to eagerness to get there and share in the celebration.  I hit the road at noon Saturday and arrived in La Selva Beach around 7:30 after a stop in Ukiah where I enjoyed the warm weather on a brief hike and basked in the glow of the news I had.  When I saw Dad and Christina it was clear that there was relief, but I quickly realized that his attitude of skepticism and ability to stay emotionally flat was a strong tonic that the rest of us needed as a guide for moving forward – please keep this in mind as you celebrate with us and you continue to respect his perspective.  Sunday was a good day of rest and spending time with family.  Monday we got up and headed for UCSF for the consultation with Dr. Kashani – the melanoma expert who works with my cousin, Zach – Robin’s son.  We got to the appointment almost an hour late due to horrible traffic, but UCSF accommodated us very nicely.  Dr. Kashani and a wonderful NP, Evelyn, met with us briefly and would return after their tumor board met over the information.  Robin and Gene arrived and Dad was able to rest on an exam table while we waited.  This meeting would’ve been very hard to come to and may even have been cancelled had Friday’s news been clearly bad.  Since Friday’s news was good, this meeting held all the more importance as a second opinion from someone our family already has experience with and trusts very much.  Dr. Kashani made it clear what we had to be thankful for:  “We consider no growth or spreading of the tumors to be success.  You have shrinkage of the tumors – that’s gravy!”  He stated that we had realized the best possible scenario with the shrinkage.  Further, Dr. Kashani said that his nuero-oncology board would review all of Dad’s information and come up with a strategy which may or may not include going forward with the Gamma-Knife focused treatments for the tumors.  He said that, since there’s shrinkage, they may want to wait and see if that continues (Stanford didn’t say that…).  What’s more, the PET scan that UCSF did just as a way of establishing a baseline condition for Dad, right now, showed something in his Thoracic Spine that they suspect to be a tumor (why didn’t Stanford do this scan or order it up right when they saw that the tumors had shrunk?  The implication being that since you’ve had this long-shot success on shrinking these virulent tumors, you should’ve acted like the overall survival picture for the patient was primary with the new news…  Instead of “going through the motions” as we’ve felt some of from Stanford.  Please don’t get me wrong – Stanford has done great things for us, but it looks like UCSF is our new choice for future care).  Dr. Kashani identified that we need to get an MRI for the T-Spine very soon so the nature of the growth there can be understood and addressed ASAP if necessary – he says they’d likely use a “Cyber Knife” on it.  The MRI for this can be done in Eureka, and Christina is working closely with Dr. Irvine to get this done and get the information to the UCSF Neuro-Oncology people before they meet over Dad’s information next Thursday.

 

Getting him in and out of Anita’s van so many times where we had him laid out on chez-lounge pillows turned into a good confirmation of our ability to transport him comfortably – Christina did 99% of the work.  Thanks so much to Carl and Anita for all the support including the use of their van – sweet ride!  Dad’s still getting stronger and more able to help with the transfers.  Last night as I helped get him into bed (HIS bed – we’re getting rid of the hospital bed soon) the arm sling was pinching his neck and he said, “Christina, the sling” even though I was the closest one and the one who reached up and detached it, relieving the pressure on his shoulder and neck.  I leaned in and told him, “you can ask ME for help too you know.”  He replied with typical Stockwell Smartasm (my own descriptor – figure it out!) – something about him having two slaves and not just one.  My passion waxed quickly, as I’m known to exhibit, and I told him, “no one who helps you does so for any reason but the desire to do so – you’re one inspirational dude!”  He smiled and I kissed him goodnight with a tear in my eye.

 

Thank you to everyone who has dropped me a line or told me in person about how my Dad has always been an inspiration to them.  This has also been a common theme in cards and other communications directed to him.  It’s a source of great pride for me, and, if/when he can let his humility shield down, for him too.  No one could’ve known though, that the way he has acted throughout this ordeal would be so inspirational.

 Last, in re-reading this prior to sending, I feel that a miracle is an unfair concept.  In life, all of the positive thoughts and actions of those who never got their miracle should be acknowledged, so celebrating a miracle in and of itself is a slap in the face of those who fought just as hard for theirs and didn’t get it.  The “miracle” for me as I move forward will be that so many great people showed support for Dad through their positive thoughts and actions. I don’t write for effect – I feel it.  Thanks for reading. 

From Eric – Update for 11/12.

Good morning to all!

 

     We had a wonderful gathering at the Swiss Hall on Saturday in honor of my Dad.  Thank you so much to all involved and all who attended.  Hopefully we’ll get some pics up on Pete and Mike’s blog.  I also started a new page at SupportCircle.com.  The link below takes you in and it’s easy to find Dad’s page.  As I wrote within those pages, I welcome anyone to go into the “administration” page for that site and do whatever site-building you have ideas for.

 

http://www.supportcircle.com/index.htm

      Although he couldn’t make it to the party, Dad was very touched by everyone’s efforts and support.  What a great group of people!      This week our focus is the scheduled followup visits at Stanford and UCSF.  I’ll update when I know how that will go down. Have a good week~

From Eric – Update for 11/09.

I feel like Annie this morning – anticipating Tomorrow!

 

During the week I spoke to my Dad about how long he wants to stay at the party, and he is somewhat apprehensive…  He stated that 30 minutes would be a long time, but I think we’ll do better than that.  I know it goes without saying, but please always bear in mind that he is so appreciative of all the love and support, and if he doesn’t want to stay long it has to do with issues beyond most if not all of our comprehension…  I know that everyone understands that to be in his shoes would be far beyond just a ‘challenge’.  Christina is also so appreciative and humbled by the outreach of the communities around my Dad and her.  Both of them are feeling very very anxious about getting back down to Stanford and UCSF next week at this time for the followup scans and consultations.  However it goes down tomorrow I know it will be a special event where the power of our collective love will be felt.

 

Dad has been moving his left leg quite a bit, and he’s able to roll around somewhat, shifting his position in bed a little more easily.  The signs are great for progress, but, as it has been, it’s slow to come.  His overall strength of will is incredible, and he’s been positive more often than not.

 

Thanks, all – see you tomorrow!

Party list, gots and needs

Thanks to everyone who’s been in touch! Here’s what we have so far:

PARTY! (help appreciated)

This Saturday, Nov. 10 from 3 to 7 p.m. at Swiss Hall, we will celebrate Glenn’s return and show the love. Hopefully he’ll be able to make an appearance, but regardless, we will have fun in his honor.

Thanks to Moose Mason for handing the liability insurance.

Thanks to Steen and the gang for agreeing to provide tunes!

Thanks to Eric for keeping us all updated — and to Pete (and Mike B.) for setting up this blog, which makes communicating so much easier.

And everyone else.

Now, what we need is:
Rental/deposit money $300 ($100 of that is deposit to be refunded)
Beverages, including water and, of course, booze
Table cloths if desired
plates
silver (plastic) ware
cups
napkins
food (if we have the funds, I can check about catering/trays)
coffee plus cream and sugar
decorations (we can’t put stuff on the walls, as the building is old, but could make a nice display or have balloons or whatever)
cleaning supplies for after (dish soap, towels, garbage bags)

That’s my quick list. I’m on air right now, so am probably forgetting something. Please comment or email (jen@kslg.com or savagewright@suddenlink.net) or call me (442-3696 or 267-8458) to volunteer, suggest or take charge!

Jennifer Savage

From Eric – Update for 11/05.

Hello, All:

 

     What a beautiful weekend – 70’s in Loleta all of both days.  We got Dad into the wheelchair and enjoyed an hour or so up and around and outside.  He did well and didn’t get shaky and worn out from the exertion of being up.  We’re building on this in hopes of having him at this Saturday’s gathering for an hour or two. 

 

     I’ll try to update later this week.

 

November 10, Swiss Hall

I am happy to finally confirm that we have a venue for Saturday, Nov. 10: The Swiss Hall. It’s on Tompkins Hill Road, south of CR. I will need a homeowner to step up and sign the insurance policy. More details to come when I’m not simultaneously doing radio!

Jennifer Savage

jen@kslg.com

442-3696

Swiss Hall, venue update (sort of)

So far, I haven’t even been able to leave a message for Swiss Hall because every time I’ve called, the phone rings and rings, and then I get “the machine is off.”

I’m moving slowly on this because I’m trying to find the closest best venue, but between places being booked and people being hard to reach, I’m not yet having any luck. The Bay Room at the Wharfinger is available, but only holds 60 to 80 people, which I doubt will be enough, what with all the people who love and care about Glenn!

I’m positive everything will work out! If anyone else has suggestions or time to call around, let me know. Swiss Hall’s number is 733-5200. My number is 442-3696 or 268-8458. Email me at jen@kslg.com.

Jennifer Savage

From Eric – Happy Halloween!

Happy Halloween!

 

     Dad continues to make progress in establishing his routine and gaining strength.  He was in the wheelchair for a bit yesterday and then got pretty tired, but later he was saying how he needs to do that more – good positive strength-building attitude.  We’ve had some great talks, and he’s glad to be at home.  There have been a few people who have come around and helped out (like Josh and Ulise {sp?} Neff who planted garlic yesterday – thanks, you two!), and while it’s greatly appreciated, there is a very precarious balance when it comes to phone calls and setting something like that up versus allowing maximum peace and space.  Ideally we could create a schedule and accomodate all who would want to visit and/or help out, but it’s too much right now to set up any kind of framework for this.  Basically people will have to wait until 11/10.  If you have an idea for something you’d like to do before then please email me directly or call me and we can talk about it – I definitely want to see people able to follow their hearts on this, so don’t be shy.  I’ve been reading cards and letters to Dad – you can always send to him at PO Box 6, Loleta – 95551, or you can fax to me at 445-8914 if you have a message that you’d like him to hear.  My wife made a nice, light-weight blanket for him, as he feels trapped under heavier blankets and linens.  Little stuff like that means alot, so be creative if you need an outlet!

 

     Thank you all so much for being so understanding and supportive.