Coda: an SF native manzanita rediscovered at the Presidio.

Late this fall  "a native San Francisco manzanita bush believed to be extinct in the wild for more than 60 years was discovered in the Presidio (SFGate:)." The Franciscan manzanita's supposed disappearance roughly coincided with the time Harold lived here on this earth. I think Harold's spirit found it and sent it back to us.  A coda to his last year, a consolation, and a prospect of a good year to come.

More about the plant here and here.

Unless someone has photographs of the memorial that they'd like to share--which would be nice--this post officially retires the Harold Update blog.

Peace and all good

Photo: Charles Webber © California Academy of Sciences

Memorial

Hello folks,
Here's a reminder about Harold's memorial on Saturday:
Saturday the 28th of November,  2pm
Unitarian Universalist Church of Berkeley (in Kensington)
1 Lawson Road, Kensington CA 94707
Directions are found at http://uucb.org/directions.html
(google/mapquest, etc. are unreliable for this location)
Peace.

Harold remembered in the Berkeley Daily Planet

As many of you will know, a remembrance of Harold was published this week in the Berkeley Daily Planet, written by Matt Cantor. It is online here, copied below.

News:

Remembering Harold Murphree

By Matt Cantor

Thursday October 29, 2009

The Planet needs your help. Give to the Fund for Local Reporting! 
 

Harold Murphree

Our dear friend Harold Mark Murphree died in his sleep in the early morning of Sunday, Oct. 18, 2009, at the age of 60, after a night of warm banter with close friends. We are all deeply grieved at this profound loss.

Who, now, will cite forgotten Macedonian military strategy, local rhyolite formations or examine Second Dynasty Egyptian mummification rites?

Who will move great boulders by hand, restoring streams, assaulting them with geometry and bodily sinew?

Who will carry 18 buckets of tadpoles in the bed of his Ford F1 so that tiny croaking sounds might break the evening silence?

Who will witness the mighty Epipactis gigantea as it struggles against the over-full blue recycling tote?

Who will argue the validity of determining electron location or the root causes of H1N1?

In his absence, who will build the canted stone wall that enfolds the secret garden, mortaring tiny chinks in place to create the sublime, the overwhelming beauty?

Who will read our articles or poems with such care, noticing the tiniest and most personal particle of voice, turning the leaf and noting the lowly creature beneath? Who is left to do that?

And who will tell small and epic stories to Rose? To Sierra? And to all of us?

Harold M. Murphree was the son of Harold C. Murphree, a U.S. Army neurosurgeon, who moved with his family many times over the course of a military career. Harold C. died in 2006, and was blessedly not forced to experience his son’s untimely death at the hands of multiple myeloma and a health care system that does not care or do enough.

There is something elegantly poetic about Harold being related to Daniel Boone on his mother’s side, Emilee Boone Murphree of Ashland, Ore., a city which Harold observed was “too much powdered sugar.” He was like that. Hyperbolic, absurd or very serious.

His daughter Sierra recalled Harold filling his lungs with helium to perform from Huckleberry Finn during her childhood. He was the same in recent years. Always entertaining in his droll, falsely serious persona of scientist, raconteur. Often he was simply an attendant ear to his many close friends.

Harold began college at Washington University in St. Louis, Mo., but came to Berkeley (lucky for us) in the late ’60s. Though he never earned a degree, he would doubtless have made an outstanding teacher in any of several fields, having read deeply and relentlessly through his adult life and with little fear of complexity.

Harold leaves behind too many loving friends and intimates to mention, but here is something of a list. His siblings, from eldest to youngest are Gwyn Bissel of Napa, Terry Littleton of Ashland, Ore. (cue Harold!), Tom Murphree of Monterey, Eric Murphree of Albuquerque, N.M., Carl Murphree of Marshall, Mo. and Phil Murphree of Gillette, Wyo. He is survived by his mother and the mothers of his two daughters: Rosemary, who lives locally and is mother to Sierra (34), and Jackie Gamble, mother to Rose Ines Murphree Gamble (13). Our thoughts are constantly with these two young women.

He is also survived by his friends, Emmy, Phil, Lorna, Mark, Richard, Karl, Matt, Martin, Glen, Natalie, John and all the faithful at the Vine Street Peet’s and around Berkeley, as well as dozens of garden owners, homeowners, and others who benefitted and continue to benefit from his skill. We also wish to mention Don and Tracy Flory, Gigi Gamble, Joan Monheit, Margie Cohen, Sharon and Ben Ruffman-Cohen, Cate, Tom and Este.

He will be deeply missed and never forgotten while we are alive to kindle these flames.

Harold's Memorial Service

The date and time have been set for Harold's memorial service. Sierra sends the following:

Laddie's memorial service is going to be on
Saturday the 28th of November,  2pm
at the Unitarian Universalist Church of Berkeley (in Kensington)
The address is 1 Lawson Road, Kensington CA 94707
and directions are found at http://uucb.org/directions.html
(google/mapquest, etc. are unreliable for this location)
please pass this information along to interested folk.
I am excited to see y'all who'll be able to make it.
Love,
Sierra

In Memorium by Bob Randolph

He's gone home

Today is the 19th of October. Harold went
home Sunday, during the night. He was a
giant among us.

He came from an historic and ancient valley in
Alabama. We never knew much about his early
life. We just knew that he was in a military
family, so he came to know almost every place
on the earth. This was also true for so many of
us, but none of us saw the invisible truths as
well as he did. He was able to contribute
something truthful about almost everything, no
matter what century it was in. He would know
why Julius Caesar was murdered by the
Brutuses of Rome, why the rainstorms were so
great in his Alabama valley in October of 1983,
way more than in the 3 years before, how
astronomers could tell when eclipses of the sun
would occur and where. It seemed important
about every subject imaginable. And he was
always modest. He knew so he would share it. It
was that simple.

He made his living knowing why creeks ran as
fast as they did, and how one human being
could move a 30-ton boulder into place at the
edge of the creek near the trees.

There have been many giants throughout
history. They all died, and they are all
remembered, as though they were still alive. It
is true that immortality exists; whenever they
touched lives 2 at a time or a million at a time,
they are all still alive.

Harold is in our memories, will always be
alive, and because of him, that he was in our
lives, we slowly become more able to think
and remember and share like him.

Let us remember, as he would have, that death
is a part of life, and that life is a part of the
eternity we join when our time on this tiny
planet is ended.

He will always be with us, on this corner. Let us
greet him here, each morning in the years we
have left.


Oct. 19, 2009


Bob Randolph

New Pictures From Tracy

Click here for new pictures from Tracy

New Pictures

at Laddie site

Harold and Walt Whitman

These lines from Whitman reminded me of Harold.

Leaves of Grass

"I believe a leaf of grass is no less than the journey-work of the stars,
And the pismire is equally perfect, and a grain of sand, and the egg
of the wren,
And the tree-toad is a chef-d'oeuvre for the highest,
And the running blackberry would adorn the parlors of heaven,
And the narrowest hinge in my hand puts to scorn all machinery,
And the cow crunching with depress'd head surpasses any statue,
And a mouse is miracle enough to stagger sextillions of infidels.

I find I incorporate gneiss, coal, long-threaded moss, fruits, grains,
esculent roots,
And am stucco'd with quadrupeds and birds all over,
And have distanced what is behind me for good reasons,
But call anything back when I desire it.

...I think I could turn and live with animals, they are so placid and
self-contain'd,
I stand and look at them long and long.

They do not sweat and whine about their condition,
They do not lie awake in the dark and weep for their sins,
They do not make me sick discussing their duty to God,
Not one is dissatisfied, not one is demented with the mania of owning
things,
Not one kneels to another, nor to his kind that lived thousands
of years ago,
Not one is respectable or unhappy over the whole earth.
So they show their relations to me and I accept them,
They bring me tokens of myself, they evince them plainly in their
possession...
My ties and ballasts leave me, my elbows rest in sea-gaps,
I skirt sierras, my palms cover continents,
I am afoot with my vision."

(From Noon to Starry Night; Faces)
"Sauntering the pavement or riding the country by road, lo, such
faces!
Faces of friendship, precision, caution, suavity, ideality,
The spiritual-prescient face, the always welcome common benevolent
face...
Sauntering the pavement thus, or crossing the ceaseless ferry,
faces and faces and faces,
I see them and complain not, and am content with all."

Letter from Lara

Hi Dear Friends and Family of Harold,

This is not a very good photo of Harold or his fence however I did want to share it with you.

I had wanted and needed a fence in my backyard for years. My wolfdog Roo would get out of the house and go tearing around the neighborhood like a crazy person chasing deer, fighting with his arch enemy the dog down the street and causing us to have major anxiety.

Harold was a witness to some of this as he would come up to visit Leland, eat dinner with us sometimes, and sleepover and shower here whenever he wanted.

I had seen Harolds incredible work and was smitten... Sometime maybe in February Harold agreed to put a fence up for us!! We were delighted and excited. Harold designed it, and did most of the work himself including lugging maybe 100 60lb bags of cement up the steep hill behind the house.

It's a beautiful fence flowing with the shape of the land. He joked that it was like the ponderosa and and even hummed a few bars from Oaklahoma. I told him that it fullfilled my horsey girlhood dream of having a place with a corral.

It was so much fun to have him here and little did any of us know that this was his last big work of art. And that while he was doing this beautiful work he was suffering with the pain of Multiple Myeloma.

We were concerned that he seemed to be getting sick with colds and the flu that seemed to linger too long. At one point we took his blood pressure which was super high and urged him to go to the doctor.

Could not believe when he called us from Highland a few days after he was admitted that he had managed to get there on his own and hoped it wasn't serious but when he described his symptoms including the high calcium, high bloodpressure, and of course the renal failure we knew it was more than serious.

Right now I'm looking out at the beautiful fence he built and wish he could be here with us. I miss him terribly and keep wishing I could talk to him and see him again.

Sierra helped Harold cut the wire for the fence and I am so glad I have gotten to know her a little better.

I would love to hear Harold stories the good the bad and the beautiful.

LGS

Pictures of Harold / Laddie

Pictures you send will be here.

Laddie

Dear Family and Friends, by now you will have heard the very sad news that Harold passed away in his sleep Saturday night, at the house of his friends, Donald and Deb. The letter below was sent to the family this morning by Tom, Harold's brother. I thought I'd post it here. If you have photos of Harold you would like to share here please send them via email and I will post from time to time.

Dear Family,
 Laddie died yesterday, Sunday, 18 October 2009.  He died while sleeping and apparently without pain.  He’d had dinner Saturday night with his close and longtime friends, Donald and Deb, and was spending the night in the guest room of their home in Berkeley when he died.  The cause of his death is unknown, but it probably was a complication of his multiple myeloma.  
 Many of Laddie’s friends and family went to Donald and Deb’s house on Sunday to visit with each other and to see Laddie’s body before it was taken to the mortuary.  Sierra, Rosemary, Jackie, Rose, and I were there, along with a lot of friends.  I think everyone was very glad to have some time to be together with others who loved Laddie, to remember him, to learn from each other about him, and to start to say good bye to him.
 Laddie’s body will be cremated and the ashes will be spread over Mt Tam in Marin County, a beautiful place that Laddie has loved to explore since he was a teenager.   The cremation will occur this week and the spreading of the ashes will probably occur sometime during the next 3-6 weeks as part of a memorial ceremony.  The plans for the ceremony are just getting started and the date has not been set yet.  I expect Sierra will be taking the lead on planning the ceremony.
 Please pass on this news to others who might want to know.
 Goodbye, Laddie.  We love you.
 Tom

Onward (October 17)

Harold got his phone working this morning, just in time to receive a call from his friend Ed, who swung by to pick up him and his things, which is my cue for one last post. As of this morning Harold is based back at the Carlton Street address. He's got some groceries, his wheelchair and walker, meds...

Murphree family--glad I could help out with information these last weeks. Harold is recovering strength quickly. He did some moving around the apartment without his walker this morning, supporting himself on furniture, walls, doors, etc., but doing it. Boiled himself some eggs. Chemo starts Monday.

Peace and All Good

Friday, October 16

Harold's first two days have gone very well. Every day he's a hell of a lot stronger. Last night we had a big renal-diet meal. He ate more than he had in a month and in the morning was much more energetic. Yesterday Eddie took him around town doing errands and chores and enjoying being out in the air and seeing clouds, cars, trees, bridges, people after a month at that awful hospital.

He wants to get out into more permanent housing soon. He hasn't prepared a meal yet so he'll do that tonight and see how it goes. Walking with walker around the house. Getting good at using his wheelchair. His arms aren't strong enough to push himself along in the wheelchair so he's getting around by his legs. It's helping the back pain.

Other stuff:

• Today we went to social security to get the disability app going. It will require some online work and one more trip.
• Once that is set up and he has an address Paratransit will be set up for his dialysis (I know a lot of you have been thinking of Paratransit--never fear, it's in the works!) Trish has volunteered to get him signed up.
• Phil took him from SS to his first outpatient dialysis. It went well. It's conveniently on Claremont near 54th. The schedule was set for Mon/Wed/Fri at 1:30. Pick up will be around 5:00-5:15. Anyone out there who can transport him until Paratransit is set up?
• Food. A couple of friends of mine have volunteered to shop for him every Thursday. They will take it in turn. All good healthy food.
• Phone. Harold's phone situation should be fixed soon. Until then you can keep using 601-5762. Please leave a message if you get the answering machine. There were a lot of repeated hang-ups today which can get pretty distracting. If Harold's here he'll pick up, otherwise we let it ring.

Anything else? Can't think of anything just now.

Peace,
Jackie

Harold got a wheelchair

From Eddie.

Wheelchair FYI and update

We talked last night about getting a wheelchair for Harold.

I have a pal who had two chairs; asked her for one via text; reply pending.

Does anyone else on the blog have a good, working wheelchair available?

Harold Needs a Lot of Help

Now that Harold's out needs a lot of help. For now he's safe at my place but I need to salvage my semester. Also, he and I are sharing the living room for a bedroom and I'm on the couch. It's perfectly doable short term, but not for long. kind of tight. Here is a list of what he will need in the days to come:

• Housing, preferably with no or few steps His legs are too weak for them still and he has to go on hands and knees unless very good handrail. A small kitchen or easy access to kitchen. Easy access to bathroom. Accessible by walker.
• Someone to help him get the food he needs. Shopping, whatever preparation is needed. He can make do with a lot of canned food, cupboard-type food, fresh fruit. - all from his food list posted here.
• At moment he has no freezer space. I have some fridge and cupboard space.

• Help getting his cell phone up and running (or new phone and charger).
  

•  Help arranging transportation to and from clinics every weekday, either through services or rides. His schedule: M/W/Fri Dialysis; Tu.Th chemo.
• Occasional shopping and schlepping.
  

• ASAP help getting his social services. Today one friend is taking him to DMV for ID and Soc. Sec. office for SSI/Medical/Medicare. There will be other visits.
• Until it's more second nature for him, checking in from time to time I made and printed daily med checklists for him to keep track of meds, and Rosie put together a binder for all his paperwork (Highland, UCSF, diet, chemo, etc) These aids can go wherever he goes and make it easy on whoever's helping out.
• Projects. I don't know much about them. Sierra knows a lot about his Photo art prints sales, his cameras for sale, etc.

My (seldom used) home phone is for his use: 510-601-5762. To reach me call my cell.

OK, my posts will probably be less frequent or shorter now.

Pace e bene.

Harold's allowed diet - some have asked

Harold's approved renal diet

Harold is home

Hi all, I'm not even gonna proofread this.

Harold is out of the hospital. Long story, but quick version here and more later. Waited at Highland for a while, got the medicines (a lot) and headed out to UCSF. Four hours later - No, Seriously! There was an accident on the bridge--four hours and plenty of conversation and fresh air and seabirds later we arrived at UCSF medical center, where even being turned away was a beautiful enough experience to bring tears to your eyes. They couldn't admit him at this point since he's not an inpatient kind of person anymore. But their triage nurse was great, the doctor was great, and the social worker who gave us AMAZINGLY useful and told us the very best way to get services. That is, do the SS disability first, based on his presumptive disability of the permanent kidney failure, from which the Medi-Cal and Medicare will follow automatically. He warned us how the SS people will be mean and stupid (his language) but that we can go there and be clever. Once that's all in works, go to the UCSF Multiple Myeloma center and say we want in. Anyway, so we brought Harold home, arriving around midnight. For tonight he's at my house (since there will be no one at Sierra and Rosemary's tomorrow a.m.) but we'll need to get him settled more comfortable as soon as possible (there is only one bedroom in this apartment and it's Rosie's.)

Outpatient dialysis and chemo, and hematologist appointments are lined up at Highland can all be kept as scheduled until the UCSF thing get's going, as we all hope it will.
Tomorrow we'll  help him get set up with a regular medicine schedule, calendar, and whatever, Rosie will stay home from school and take care of this with him, and I'm going to knuckle down on some homework and start catching up on that.

Then, hopefully, Harold will start getting lots of phone calls, helping to arrange his care for the near future. My home phone 510-601-5762 you can treat as his, and keep using my cell phone to get a hold of me.He's going to need help lining up the right foods  (we finally got a definititve list of ok foods.) the right medicine (can someone volunteer to get three OTC ones right away?), transportation etc. Some of this can be done via social services, some not. Time to brainstorm. Meanwhile, I will happily bow out for a while, sleep in, and leave you to it.

That's all, later, gator, and Harold says Hi.

Wednesday, October 14, 2009

I visited briefly with Harold at around 4:00pm. Jackie & Sierra were already there and were packing up Harold's stuff in preparation fo moving him to UCSF Med Center. Everyone was in good spirits and anticipating the prospect of finally getting Harold some more appropriate care. UCSF has many physician/researchers including the recent Nobel Laureat in Medicine, Elizabeth Blackburn. (Press Release below) She is a professor at UCSF and also involved in stem cell research with a biotech company named Geron aimed at developing therapies using stem cells to address the enzyme telomerase with multiple myeloma cancers. Geron has several drugs in Phase I & II testing, although apparently these trials are not being conducted locally.

Press Release

5 October, 2009

The Nobel Assembly at Karolinska Institutet has today decided to award
The Nobel Prize in Physiology or Medicine 2009 jointly to

Elizabeth H. Blackburn, Carol W. Greider and Jack W. Szostak

for the discovery of

"how chromosomes are protected by telomeres and the enzyme telomerase"

P.S.

A dialysis clinic was found and treatment has been arranged. yay.

October 13. Foiled Again

Well, Harold wasn't discharged.

First--his health is fine, no changes. Tired, really hurting, and fed up, but not worse.
As for the rest:

1) the Fairmont bed didn't come through (the person vacating wasn't well enough to leave)

2) By afternoon the Highland team had changed placement options. Dr. Hassan believes he has improved, if slowly. He is now no longer sick enough to be eligible for a skilled nursing facility (Medi-Cal requirements) . Personally I think it's funny that they decide that the very day they lose his bed at Fairmont. We may try for this anyway if we decide it should be done.  

The new option recommended is a board and care. Some of you  will know that this is fairly expensive, and Medi-Cal doesn't pay for this (despite the fact that B&C's are cheaper than SNF's. Ironically Oregon MediCaid does pay for these last time I checked.

3) UCSF needs his records before they can consider him for placement/treatment. But despite what had been communicated, we can't get his records to UCSF any time soon. It's back to what we previously thought, per HIPAA/Cali law, etc.: Complete records only at Harold's discharge, and they have up to 14 days to get them to us, or to wherever we ask them to send them.There is now an order placed for them to start getting records together for  UCSF as soon as he's discharged.

So, Tomorrow his medical team is meeting with him as the last meeting before discharge. Renal, Oncology, MD and I think Social Worker. Rosemary and Sierra will be there with a sheaf of thoughts and questions for the team. But especially to make it clear that Harold won't be released when he has no where to go and no income or savings. AND THAT THIS BEING THE CASE A WAY MUST BE FOUND TO START HIS CHEMO. Also will see if his level of home care needed is doable enough that Harold could come home. BTW, sometimes Medi-Cal will pay for home care visits, we'll check. As you can imagine there are many other details and applications and monkey business, some of which is hopeful (e.g. Getting him applied for Medicare which will really open up his options.) which I'm not going to clutter this blog with, to end a sentence with a preposition.

Again, lots of people doing lots of work today, and more tomorrow.

Send good thoughts,
Jackie

A Good Day's Work

Well, after much effort by many people Harold is lined up to be released tomorrow either to UCSF (crossing our fingers) or Fairmont. Sierra did the bulk of the legwork today, talking to the social worker, doctors, records department, as well as UCSF staff. Pretty amazing and hopefully Harold's at the end of this first pretty awful stage, and will begin to get the care he needs. As was noted yesterday, as an end stage renal disease patient Harold is now eligible for Medicare A and B in addition to the Medi-Cal he's applied for. Medicare pays out at a higher rate and more folks are more willing to accept that then to accept Medi-Cal. Here's to a good night's sleep to everyone and a good, not too stressful day for Harold tomorrow.
Pace e bene

Thanks for Medicare link, Emmy.

Monday, October 12th

2:30PM
People on multiple fronts are trying to get Harold over to UCSF as soon as possible. Harold wants to do whatever it takes, even the emergency room approach. To prepare for that we need more information. Sierra is at the hospital and will speak to the social worker at Highland to see what insights she could give us. Also, she will check on the status of Harold's Medi-Cal application, and get an application for Medicare started (thanks much to Trish for letting us know of this availability).

Lara has made contact with administrative personnel at the myeloma center at UCSF, they will accept Medi-Cal and Medicare, and if he got [enrolled? signed up? ?] They could have an appointment for him as early as tomorrow. Of course we will need intake and not just an appointment so folks are working on all of this. Lara is now going to try and get in touch with a social worker at UCSF.

Meanwhile I've contacted all my hospital chaplain friends to see if they have any useful contacts amongst administration folks at UCSF. Also have left message for a friend who is a social worker at Kaiser specializing in oncology. Maybe she may have some thoughts. Finally, I will call UCSF Multiple Myeloma center again to get more information on how to get Harold admitted.

He can go in an ambulance if Dr. Hassan (or her senior) signs a discharge thingy. Sierra and Harold are working on this as well.

Very busy day. Please send prayers, or electromagnetic fields, or the smoke of little burnt papers up into the heavens that this effort will bear good fruit soon.

Any thoughts, helps, insights, just give someone a call. (my number, should you want it, I will give if you send me an email.).

Peace,
Jackie

Sunday, Oct. 11

and 10:00 PM.
Went over to see how Harold was doing. He was resting quietly. Pain had subsided a bit. He was watching Inspector Louis.

6:50 or so
Hospital still trying to find a place that will accept Harold for outpatient dialysis (Children, can we all say "no health insurance") Let's hope tomorrow everything falls into place.

~1:45 PM
Harold is feeling weak and in a lot of pain and asks for no visitors for a while.

Comments now visible on side bar

Comments not showing below posts sure was annoying. See the new feature on the right that lists recent comments. If you click on the comment author's name it will jump to the original post.

Saturday, October 10

Hi folks,
We went to see Harold this afternoon. When Rosie and I arrived he was about to have a blood transfusion, which they'd ordered shortly after we'd talked on phone. We hung out while they set it up. I asked the nurse about it and she brought chart so I could see Harold's signature approval. What I thought I heard, and I asked twice, was that his hemoglobin levels were too high.

About 1/5 of way through the bag o'blood Harold got groggy and sleepy and drifted off. He hadn't slept well last night. So we took our leave. His friend Lincoln was arriving as we left.

So at home, online, I see a lot about low hemoglobin levels related to meyeloma-related dialysis, but didn't find anything in my short search regarding high levels. Any of the kidney-knowledgeable or medical folks out there have any knowledge to share?

I did see some related articles that looked interesting for their own sake. Anyone have access to online science article databases? My school doesn't subscribe to any (drawback of going to a theology school) and cost per single article is pricey.

I'd like to read this article on ScienceDirect

Best Practice & Research Clinical Haematology
Volume 18, Issue 4, December 2005, Pages 635-652
Advances in the Biology and Management of Plasma Cells

Here's another interesting one, available at SpringerLink:

 Continuous ambulatory peritoneal dialysis in patients with renal failure due to multiple myeloma
Journal    International Urology and Nephrology
Publisher    Springer Netherlands
ISSN    0301-1623 (Print) 1573-2584 (Online)
Issue    Volume 39, Number 2 / June, 2007
Category    Original Paper
DOI    10.1007/s11255-006-9160-z
Pages    629-633
Subject Collection    Medicine
SpringerLink Date    Saturday, January 13, 2007

Friday, October 7

Hi all. Dr. Irwin came to talk to Harold this morning. Harold wasn't feeling up to speed at the time. Neither I nor Rosemary and Sierra got there in time to be there. Harold reported to us that he got to tell Dr. Irwin what's been the problems--e.g. not following through on requests he'd nominally agreed to, or at least not specifically refused to do (sending tissue down to rational therapeutics for analysis). To follow his own course without consulting with Harold, etc. For example, at one point this morning Doctor Irwin said he wasn't the one to talk about sending the tissue down to LA that the pathologist was. To which the obvious reply is why didn't you say that from the get-go? Anyway. That pretty much took care of that.  Things pretty much the same. He hasn't started  chemo yet, they will be discharging him soon.

However Dr. Irwin did agree to send the pathologist in to talk to Harold, and he came in while we were there. He brought in some printouts from the NCCN Evidence-Based Cancer Guidelines that Emmy had pointed us to. I forget the doctor's name. But he and Harold had a great talk. The doc told him frankly his opinion of  why at this stage of their development the information from these technologies (there are a number of them) hasn't proved any more useful then the guidelines currently in use, and that he believes the companies marketing this new technology are preying on patients looking for any route to more certainly. Harold pointed out that that all that still doesn't rule out that such information won't prove useful down the road, and that he will move forward to get the test and have it to show to his oncologists in the future, leaving it up to the wisdom of the oncologists at that time as to how or if they'll use the information.  Finally the pathologist pointed out that Rational Therapeutics has their own needs as far as collection, handling, transportation, etc. so Harold will need to have all that in place. Rosemary and Sierra were still there when I left. Rosemary and Sierra, please add if there's more information or I forgot something.

Re: Records. Rosemary got the nurse to give her the records from the last couple of days. The rest will  need to retrieved when Harold  is released, through the records department, per previous understanding. I think someone had filled in a request form and taken it to the records department already. Anyone know what the upshot of all that was? Anyway, this information from back then might be useful for whoever.

Sierra's going to be arranging for getting the yard sale going.

Haven't heard any other requests for things.

Answer to comment below of what Harold wants from his friends

A comment on previous post asks
    What does Harold want and not want from his friends?

Short answer: As of tonight I heard: B12, Niacin, & zinc. I couldn't get them so he was going to call around to see who could. I don't know where that one's at.

The Oncologist meeting: The doctor has not given a particular time, just "in the morning." Harold has  asked for a measure of privacy on this one.  I'll be there for some of that meeting but not all of it, and will pass on information like always. I don't know anything about whether he's asked or wants anybody else to be there. But I trust he'll call around like he usually does if he needs anything.

Thursday Oct 8

AM
Harold's going into surgery this morning to get a long-term access point put in, then will go into dialysis. His phone still doesn't work for incoming calls, but can call out.

PM
Harold had surgery which was short, and he was reported to be perky afterward. The dialysis was before that. Other than that no news. Lots of friends taking care of lots of business, keeping things going while he's laid up.

Final PM
Dr. Wright's office contacted Harold to say he will be in tomorrow. Said it a number of times, reportedly, maybe to make sure Harold knew the doctor wasn't lying this time. The benefit, I think, of having one's supervisor get involved.

Sierra is picking up his vitamins, pen, and drawing and writing paper, so folks can take that off their lists.

G'Night,
Jackie

Wednesday, October 7

Hi Folks,

One good step forward: I got hold of the patient advocate at Highland to express the concerns about Dr. Irwin's lack of responsiveness and communication, and his continuing to not show up when he says he is going to. She seemed to take the case seriously. She said whe will send from her office a letter to Dr. Irwin  and a letter to his supervisor.

Other news, They are looking to move Harold to Fairmont in the next day or two. Rosemary says Sierra says he seems at peace with this.

Speaking of Sierra, good news is that she's back in the Bay Area. Bad news is that she broke her foot. Good news is that therefore she was at Highland to hang out with Harold.

Others may know more of what happened today. H's phone has been out of service. As of half-hour or 40 minutes ago they said twenty minutes and will have been replaced. But apparently not yet. I'll keep trying. Anyone else want to harass the nurses station, I'll be rooting for you.

Later that day

Dr. Irwin never did show up. So this evening Harold was as upset as you'd imagine and pretty well ready to go on a hunger strike. He is going to try - with help of friends I believe - to get this guy off his team and get an oncologist who actually cares to communicate and listen to his patient. Every day counts and it's been about a week now that Harold (or anyone else) has been unable to contact him. Lara, maybe now is a time to follow up again with trying to reach the highland patient advocates. They haven't called me back - none of the three.

Other news. Dr. Hassan was able to talk to one of Dr. Irwin's senior team members. He gave her a staging number as requested. As many suspected, Harold's cancer is at stage 3. 3B to be exact, with the B standing in for abnormal renal function according to Doctor and confirmed here , link provided by Emmy.

It doesn't look too good for that stage. I'm afraid the median longevity after diagnosis is 15 months. From what studies I've found online the longevity after a diagnosis including renal failure depends upon the level and type of failure - calcium-related or myeloma intrusion, healable or not, whether dialysis is temporary or permanent. etc. So I will continue to research a little. Anyone on this list have any other information?

Finally, Dr. Hassan confirms that dialysis is going to be a permanent part of Harold's life now. Done on outpatient basis at some point, once Harold moves out of Highland. I asked if the kidney function was stabilizing or improving in any way yet, and she said unfortunately not yet.

I might already have said, today Harold started on an initial chemotherapy that will hopefully help with stabilizing the kidney issue.

What else. The renal team is already working on lining up a clinic where Harold will be able to get his treatment

Peace, all.

ANY ONE WANT TO BE PART OF DISCUSSION WITH ONCOLOGIST?

Harold wants to let you all know that anyone and everyone is welcome to be present when he talks to the oncologist. He doesn't know the time yet but sometime this afternoon. Just show up and hang out and maybe it will happen, and if not you'll get a good visit.

BTW you may not know his room number changed. He is back on the seventh floor Rm 7314B

Tuesday 10/6

AM
Was at Highland but doctor hadn't arrived by the time Harold had to go to dialysis. Will try again later.

Last for tonight the 5th

Thanks Barbara T for posting the previous. Some new news about the sample down to LA thing below.   Dr. Hassan will tomorrow help schedule a meeting or at least a phone conversation with Dr. Irwin (oncologist)  to talk about prognosis, quality of life....  Whether or not she's successful she'll be in touch  tomorrow morning. If anyone has a question you want to air with Harold's oncologist how about if you leave it in the comments here..I'll try and check this blog before I head out tomorrow.

Also...To help with stabilizing kidney function in order to move forward with confronting the cancer, Doc says they are likely very soon (tomorrow, or next day?) to start a chemotherapy  (I forget the particular drug). This will be a preliminary thing, not a longer range plan.

Lastly, what some probably know already. The newer thinking on the kidney failure is that actually an intrusion of the lymphoma itself. So it's Multiple Myeloma accompanied by, kidney lymphoma I guess you'd call it. This has been on the horizon for a while, I guess they've settled on it. They'll do a  biopsy  to confirm or rule out. A good opportunity for Harold to to arrange a tissue sample to send down to the lab he wants to use. Doctor team has  expressed its reservations today but they'll go with it, so finally maybe some resolution coming on that front.

Re: cranberries, H. says no cranberries after all  - they're on the bad list, but pasta's good.

Harold has asked me to post this question:

Why haven't I yet had a sample sent to Rational Therapeutics, in Long Beach, Ca.?
They are easily contacted, at phone # 562-989-6455.
They can instruct the doctors on how to take the sample, and how to send it.

He wants this sample evaluated by them for chemotherapy sensitivity, to help direct his treatment.

He also has a dietary request update:
walnut oil.
pears.
organic turkey with cranberries: they tryptophane helps with sleeping.

Monday the Fifth

PM
Short entry here. Dr. Hassan is going to help us get a meeting or phone conversation with the oncologist, Dr. Irwin. Will let you know what comes out of it. No other news from me today.

October 4, 1:43 PM

1:43
Harold called this morning and asked me to post that he was going to be on dialysis again today for a few hours. I was not at a computer till now so sorry if someone visited for nothing...

He is out of dialysis and feeling great and wants visitors. And food, because he missed lunch. Says low-salt lentils would be nice. Or something else on the approved list.

My nephew Aaron gave me some info about newly-diagnosed kidney failure and getting into a dialysis routine. He wasn't surprised that they did three in a row and not the 3 times a week schedule. What with clearing out some pretty-well poisoned blood, and learning how his kidneys and body would take the treatment it can go like that. Plus he's on the temporary blood access point which doesn't have as good blood flow as the permanent one will, so it doesn't do as thorough a job. Thanks, Aaron. jg

Today October 3

PM
Harold doing well after second Dialysis. My nephew has long personal experience with all things kidney and suggests the following two sites for cogitating over future dialysis options:

www.davita.com
"Davita is a major player in the Dialysis market in regards to in-center and at-home care.  Their website has some useful information regarding general Dialysis care and maintenance (Diet, Medications and Treatment).  You can also find information regarding home hemo and PD.  It's definitely a good place to start."

http://www.kidney.org/
NKF (National Kidney Foundation). ..Good information in regards to all things kidney-related including treatment in the area of Dialysis.  The NKF site takes more of a patient advocate sort of role in regards to the information provided.

AM
Harold sounded pretty strong this morning. Using a temporary blood access point in the neck, the doctors did indeed give Harold some dialysis late yesterday - 1.5 hours - and they will do another 2 hours today. He will need to do hemodialysis frequently so they will perform surgery (under full anesthesia) to put in a permanent blood access pt. Here is some information about dialysis.

I found this patient forum this morning, which is kind of interesting:

Got the oncologist's  name - Dr. Irwin. Lara got the name of the Highland patient advocate/s and I'll be talking to them once they call back. Other of Harold's friends know other people who might be able to help us get access to his oncologist. Harold has got some pretty extraordinarily loving and active and supportive friends.

That's all for this morning's work. Off to other things. Leave comments or messages if you like.

October 2nd, evening

PM
Dialysis was cancelled today because hadn't done a particular test. Rescheduled for tomorrow.

AM
Harold is eating more of the hospital food this morning so he's not quite as anxious about having food brought in.
Shaver is taken care of.
Peace,
jg

Today, October first

Today Harold's diagnosis was confirmed as Multiple Myeloma. There are a number of MM sites. This one is not very sophisticated but is pretty thorough.

Harold will soon be discharged from Highland Hospital,  probably to Fairmont Hospital in San Leandro. But first they will need to monitor his kidney function for a few days. Whether due to the reduced liquid intake he had been ordered, or because of infiltration of tumor cells, his kidneys are not currently functioning properly. They'll monitor him for a few days, and if necessary he will get dialysis. If things are normalized he'll be transferred.

His prognosis is not clear yet. I hope to talk to his oncologist to get more information about that. I may need to wait until he is assigned an oncologist for his outpatient treatment.

Meanwhile Harold continues to want food from the outside. If you plan a visit consider bringing something healthy - but with low calcium and low potassium. There are a gazillion different lists but here are a few.

Things that would be handy: An electric shaver.

If someone were to register Harold here it might be a good thing.

Things you may not know:

• multiple fractures in vertebrae and ribs
• lesion on kidney, bone
• no lesions on skull or long bones of the arm
• Harold has taken himself off morphine in order to get his brain clearer and his bowel function going. It worked, but that means more pain, of course.