From Eric – Final update January 30th, 2008.

To everyone:

 

     Yesterday around 10AM Dad passed away peacefully with Christina right at his side.  Christina had asked me to sleep over Monday night, and she called to me for assistance a few times through the night.  There was nothing we could do but try to make him as comfortable as possible.  Ironically, she had been up all night trying to assist him in clearing his throat, as recently he’s had secretions causing congestion that he could not cough up – she had finally fallen asleep with him in her arms, and I could see her closed eyes darting about indicating dreaming when he stopped breathing.  She later shared that she was dreaming of him.  Dad’s will to live was so strong, but no one could’ve won that fight.  Many of us, if not all, feel relief for the fact that he now has peace.  The day turned very positive as Bill Hoopes and Karl and Anita Fulbright showed up along with nearby close family members, and calls to and from loved ones helped the process along and made it so clear that the centerpiece of the efforts to help my Dad is truly the community of love and support that so many have been a part of.  More friends and loved ones arrived through the afternoon, offering condolences and support as well as providing Christina with whatever comfort was possible – thanks to Pam, Jenna, Suzie, and all who called and were there for Christina and the rest of the family.  In the evening I was honored to preside over the collection of Dad’s body by the very professional and caring staff from Goble’s Mortuary of Fortuna.  He will be cremated, and we have yet to determine the fate of his remains – at this point there will be no public services, but an on-the-water ceremony will occur in the coming months, details TBA. 

 

     My most heart-felt thanks go to all who have offered time, energy, and love in support of our family and my Dad.  You know who you are, and, if you believe my soap-box diatribe of life, you should be clear that your soul is in good shape!  8>}

 

     I really want to close this series of communications with a thought on one of the most amazing lessons I’ve learned along the way:  many of us have thought and spoken of what we’d want if we were ever to be incapacitated.  Often the thinking of an able-bodied person on this is “pull the plug if I’m ever” paralyzed, brain-dead, terminal, insane!…etc.  On the same token, it’s not uncommon for people to theorize about what they’d do for someone else in that position, or for people to formulate ideas about how that incapacitated person feels or what they would want.  Please be prepared to trash all that you ever considered regarding this part of living that is dying.  I tried to always be in touch with my feelings about what happened to my Dad, but I also tried to always consider what he would want before acting on how I felt.  As the weeks and months unfolded and it became apparent that Dad was declining I thought so much about how he wouldn’t have wanted to live as an “invalid”, but it was also very apparent that he had an extremely strong will to live and that he had intimate communication with Christina and others of us.  I realized that no one – NO ONE – can say what someone else would want in that position, and that is in full consideration of what that person may have directly stated in the past.  When the chips are down, we should all hope to be able to play the hand out or have the choice to fold if necessary.  If someone doesn’t have that choice and you are in a position to help them while the hand plays itself out, I hope that you have the strength and resources to do the right thing and that you’re ready for the challenge of your life.  Your life will change forever, and you can control how positive that change will be.

 

     If you ever cried from reading something I wrote then you and I have a special bond.  That’s just another one of the weird ways I look at life.

 

     Thank you, everyone.  Keep my Dad with you.

 

Eric

 

From Eric – Update from 12/28/07 (out of sequence)

I hope you all had a great holiday with family and friends.  We had a good one.

 

Robin, Sanne and Jake, Stockwells from Santa Cruz area, and Gene and Barbara, Stockwells from San Rafael area, have been visiting Dad and Christina the past few days, and it’s been a great visit.  Last week Dad was fighting an infection which was resistant to the antibiotic that was started for it.  He was weak and not communicating much.  It was frustrating for us and felt like he was down-grading.  Once on a new antibiotic he really perked up and had a great day yesterday.  John Cooper walked in the room to see him and it was “Hey, Coop!”  The anti-seizure meds also seemed to set him back, but now that seems to be stabilized as well.  Since the episode at the Dr.’s office last week we’ve been on a roller-coaster ride of ups and downs, and now we’re up.  The focus is on determining, between now and around 1/4, if Dad is ready to travel and have the treatments at Stanford on 1/7.  He’s on-board, but I think he also knows that it’ll be a hard trip and he needs a certain amount of energy to pull it off.

 

I received a wonderful email message today from Dr. Stan McDaniel, an original CR professor from the 60’s who worked with Dad until ’76.  He shared fond memories of their time together and told of some qualities that made his and Dad’s relationship unique and special.  I’ve added Stan to the distribution.  Thanks so much, Stan.  Communications such as Stan’s provide me with cherished glimpses into Dad’s past which reinforce my own knowledge of his excellent qualities regarding ethics, personal beliefs, and, the clincher!, very positive interactions with others who don’t always see the world the way he does.  There’s something for all of us to aspire to.  8>}

 

I’m very appreciative of my own ability to find reasons to smile and celebrate the abundance of beautiful things that have occured in the past 3.5 months.  Thank you, everyone.

 

From Eric – Update for 01/21/08.

Hello.  I hope the new year is treating everyone well.  I haven’t been sending many updates because there’s not much to report on.  Dad’s pretty quiet lately.  We finally got the dilantin (anti-seizure med) level dialed in pretty well, and that does seem to have improved his tremors and overall level of alertness.  Strength to move or talk are lacking though.  Bill visited for a few hours and gave Christina an opportunity to take care of long-neglected business on Saturday – thanks, Hoopes!  Christina’s mother, TJ, has been visiting for a few days and will go home this week – nice to have her there helping out.

 

Anyone should feel free to contact me directly for more details or just to talk.

 

Have a good day~

 

 

From Eric – Update for 01/07/08.

We didn’t go to Stanford.  Dad needs to build some strength for the trip, and we’d like Stanford to provide a more firm schedule and some kind of expectations for the assessment and possible treatment.  Jim and Char Sanders will visit today and give Christina a spell so she can leave to do errands and have some down time – thanks, you two!  On 12/29 Jim Schilz, Josh and Bill Hoopes, and Carl Fulbright visited with Dad and I for a couple of hours – thanks, Guys!

 

It’s a short update today – have a good day~

 

From Eric – Update for 12/19.

Merry Christmas!  (I feel it’s politically incorrect to claim that’s politically incorrect!)

 

Dad’s having a hard time – possibly having seizures.  Christina and he were at an appointment with Dr. Spencer in Eureka yesterday to see about starting some chemo medication.  While waiting for the appointment Dad was in some distress and then became non-responsive.  Thinking he was having another stroke/bleeding in the brain, Christina considered getting him admitted to the hospital, but then she was able to get some response from him and asked him if he wants to go home – he nodded.  She asked him if he understood what was happening – he nodded.  They came home by ambulance.  This landscape, as I described it in the last update, is full of mysterious potential pitfalls and sudden changes.  Last night I didn’t know what today would bring.  I felt good to be able to re-assure Christina that she’d made a good choice to bring him home.

 

Dad’s better this morning (prompting more consideration of whether these episodes of late are seizure activity).  He is speaking and asked for some water and juice.  Christina’s looking into getting some anti-seizure meds, and she’s continuing a dialogue with Dr. Hancock at Stanford about coming down for more treatment there in the coming weeks.

 

These updates are touching on a place that I feel fine about – full disclosure of very personal information.  I trust this community, and I don’t feel right giving cursory or filtered information.  Just be forewarned – it’s a tough landscape to navigate in and must be tough to read about as well.  I have this characteristic (flaw?…) that makes me believe the blunt truth is best exposed.  I think it has to do with recognition of potentially wasted energy from going ’round and round’ and a desire to cut through the crap to the heart of the matter.  I really appreciate the support I’ve received from everyone.  Keep it coming, and give it to each other too – do things that make you feel OK with where you are and where you’re going.  I can’t change it.  I CAN deal with it.

 

Turn your energy into good energy whenever you can~

 

From Eric – Update for 12/15.

Hey there:

 

     UCSF called back and they do feel the tumors are larger.  They want to scan Dad again in a month, and that may be able to happen up here. 

 

     With Stanford, oh how one’s perspective can change.  Christina has been corresponding by email with Dr. Hancock there and he cleared some things up for us:  Stanford were the ones to develop the Cyber-Knife, and they still feel that there was improvement in the tumors.  The very optimistic and personal meeting with Dr. Kashani at UCSF on 11/19, along with our perception at the time that Stanford was just going through the motions, had us ready to dump Stanford, and we’ve kept them on hold as we’ve acquired the second opinion from UCSF.  Now it seems we should be at Stanford – especially since they can bother to reply to communication on a consistent basis.  We’re not going anywhere too soon, but we have something to hope for in Stanford’s willingness to try the Cyber-Knife on his brain (the spine tumor is apparently not a pressing issue at this time).  Christina is checking with Eureka to see when they can do another followup scan, then we can get with Stanford and talk about getting down there for treatment again – maybe around the end of the month or early January.

 

     In the meantime, Dad has been tired.  The trip down south this week, combined with a couple of restless nights right before it, had him totally pooped out when he got back, and he’s recovering from it slowly. 

 

     If both UCSF and Stanford were to say, “let’s scan him again in January”, I’d really feel like the writing is on the wall regarding Dad’s status.  It’s hard to write that, not because I’m not right there, dealing with those thoughts constantly, but because I don’t want to dash anyone’s hopes in any way.  I feel strongly about keeping it real though, and that is largely, if not entirely, due to the trust and appreciation I have in and for the community who receives this update.  Dad and Christina don’t read this, so I wanted to be clear about the landscape as it appears to me.  We hope for the best, and it’s very important to me to be prepared for the worst.  As you should know from reading other updates from me, it’s so beneficial for me to be able to express myself here that I make a point of doing it. 

 

     Thanks so much for all the support.

From Eric – Update for 12/12.

Greetings:

 

     The cyber-knife appointment turned out to be another consultation, and there is much contradictory information between what UCSF and Stanford have said, and also between what UCSF said 3 weeks ago and what they’re saying now.  The tumor board at UCSF will meet tomorrow and will review Dad’s case.  We have some confidence that Dr. Huang’s office at UCSF will followup with us as promised yesterday, but we’ll believe that when we see it as there have been even more unanswered messages at this point.  There were indicators in yesterday’s meeting that the treatments may be too much for him at his current level of strength, and, what’s more, that the tumors may not have shrunken after all. 

 

     We’re discouraged with the news, and are anxiously awaiting tomorrow’s “clarification”.  We’re also discouraged with the lack of professionalism regarding the calls and fax that have gone unanswered, but UCSF did acknowledge a problem…

 

     I plan to update again Friday.

From Eric – Update for 12/10.

Hey, Everybody:

 

     Sorry for the lack of updates for the past two weeks.  We’ve had some frustrating lack of progress with trying to get UCSF to respond to several phone calls and a very explicit fax asking them to do so.  Dad, Christina, Carl and Anita are on their way down to UCSF as I write this.  We think Dad will get the cyber-knife focused radiation treatment for his spine, as the MRI from Eureka and the accompanying report were consistent with a metastatic melanoma tumor there – we don’t KNOW that though, because of the lack of communication.  The people we’ve been dealing with at UCSF have failed to answer these questions:  did the tumor board at UCSF ever review Dad’s case as promised?  Was the MRI from Eureka definitive regarding a tumor in/on the spine?  What about the Gamma-Knife treatment that had been discussed?  Basically they only gave us enough information to get us on the road…  We’re running on almost blind faith, so hope along with us for the best.

 

     Generally, other progress has been the same:  slow but steady in mobility, strength, eating…etc.  Hopefully I’ll know much more in a few days and be able to convey it here.

 

     Enjoy the sun while it’s shining~

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.