Don's Health Updates

by: Kristi L. McMaster, RN, and Don Brown



June 09, 2009: Don Brown passed away peacefully in his sleep this morning at 10:55am. Sarah Goodman was at his side. Thank you everyone for all the love you put into Don's last days.

June 09, 2009, addendum:

We found out today that Don’s body cannot be donated to science, as was his first wish.  Apparently they have a 220lb weight limit, and cannot accommodate Don’s large size.  I find this especially dismaying since a whole section of the nursing conference I attended yesterday had to do with the health care crisis that obesity is currently causing.  What are they going to learn about our number one health problem, if they are only studying bodies that are under 220 lbs?  Anyway, after some scrambling, Jeremy and I found a reasonably priced crematorium (still expensive) in the Bay Area.  This was Don’s second choice, if he could not donate his body (for whatever reason).  Don also specifically stated that he did not want his ashes passed out to people, as he found this to be (in his words) a “morbid practice.” [NOTE added June 11, 2009]: I found my notes from when Don and I discussed his contingency plan if we were unable to donate his body to science. Here is what he said: "creamated, do not pass ashes out to friends, as I consider this morbid.  I would like my ashes taken out to sea." I have also been able to confirm this with Wendy Newell, who accompanied Don when he put his mother's ashes out to sea.

As far as a memorial service, Don wanted “a weekend of music and dancing—a celebration of our wonderful lives.”  We are looking into options for this, but it will likely not be until August until something like this will take place.  There will also probly be smaller memorials here and there (like at Faire and such).  We will definitely keep you posted. here's a link: DON'S MEMORIALS

Today, when we got the call from Sarah about Don’s passing, Jeremy was in the middle of serving me coffee, right as Sarah told us.  It was an interesting moment.  I found out later on that shortly after that call (while I was down faxing papers), Jeremy had been sitting in the living room, and “the oak book” had suddenly fallen off the shelf at him.  The Oak Book is a book that was made for us as a wedding gift from Wendy Newell, with help from Edwin and Lisa from Preston Ranch.  The book is made of oak, and has oak leaves in it (the theme of our wedding), along with pictures of oaks, snippets of information about oaks, and a correlation of Don Brown and Oaks (along with several wonderful pictures of Don).  It was the gift that had me choked up and crying when we opened gifts with my family.  I really should scan it in and share it with everyone (on my “to do” list now).

Once we finally made it to the nursing facility, Sarah was still there, along with Savannah, Joyce, Buffy, Hedie, Keith, and Annye.  Savannah played soft music on her guitar and sang softly, we cried, hugged, and drank hot chai (with a “last call” cheers).  Jeremy mentioned that the batch of chai we were drinking was the same that he made yesterday, and had used on a mouth swab for Don yesterday.  When Don had realized the taste, he had given Jeremy a smile.  We all took down the items that decorated the walls, and stories were told.  Staff at the facility came in the room here and there to pay their last respects, and also gave condolences as they saw us in the hall.  Some of the residents also gave condolences and thanks for our wonderful energy that had been filling their home these past few weeks.  Jeremy and I waited through the afternoon with Don’s body for the crematorium to come.  They showed up in a black dodge sprinter—a van that Don had been interested in previously.  The lady was very nice.  We went home and looked through all the wonderful outpouring of love for Don on Facebook and in emails.

One email, I would like to share with you is about Don’s last night:

Final notes from the Night Watch-

I would like to let everyone who loves and cares for Don know that he had a relatively peaceful last evening. When I arrived the decline in Don’s condition was very apparent. Ranji (a wonderful CNA) and I made Don as comfortable as we could and Don was sleeping as soundly as one in his condition could. I put on some music and played some of the Qur’an mostly the books dealing with the sun and stars and the beauty of life.  During my time with Don I was enjoying the wonderful pieces of love that all of the people had brought to the room since my last time there, amongst the items the one that caught my eye was a wonderful poem from Rumi that seemed to be the summation of Don’s condition.

The breeze at dawn has secrets to tell you.
Don't go back to sleep.

You must ask for what you really want.
Don't go back to sleep.

People are going back and forth across the doorsill
where the two worlds touch.

The door is round and open.
Don't go back to sleep.

As the evening progressed Don began to experience some discomfort for his breathing, at which time some pain medication was administered to help his breathing and rest. Right after receiving his medication Don opened his eyes and looked around the room finally seeing me he tried to speak and unfortunately had to settle for one of his more “vocal” looks, to which I could only ask “Don what are you still doing here? You are on the wrong side of the door my friend. This is the wrong side of the door for you, you belong on the other side with your mom, Dave, Brian, Virgil and all of the others, habibi. We love you here Don but this is not the side for you Don, so please step through the door look back and say Insha'allah for me once more.” Don looked at me and smiled, nodded his head and waved good bye to me and then started to drift off to sleep once more. It was the last time Don “spoke” to me. When I had to leave his side he was resting as peacefully as someone like him could be.  

I would like to say that it has been a privilege to have been allowed to be with Don in these last few weeks and can only hope that I was able to repay Don in some small measure for all of the wonderful things he has helped to bring into my life. My small portion of the adventure of Don’s life changed me for the better to which I can only say “thank you, habibi, keep a pot of Turkish on for me.”  Bissalama Don Brown Ma'assalama.


Special note from Amy Kirsch:

Hi Everyone, I am posting here because I am hoping to reach as many of you as possible. Kristi and Jeremy have been Don's main caretakers throughout his diagnosis and illness, along with Don's Uncle Bob, myself, and a few others running close behind to help out whenever we were needed.  Although the community has gratefully stepped up to help since Don's recent decline, Jeremy and Kristi continue to take full responsibility for all aspects of Don's end of life care.  I can speak first hand about the loving dedication and countless hours they have devoted to caring for Don in every way, with their hearts wide open the entire time. As uncomfortable as it may seem to bring up financial topics in times like this, you may already know that primary caretakers often spend a lot of their own resources when caring for a loved one, especially in our "alternative" community.  Everyone is well aware of tough financial times all around, so please do not feel obligated in any way to reach deeper than your pockets allow.  However, if you can "spare some change" amount is too big or too help Kristi and Jeremy recoup some of their caretaking expenses, it would be most appreciated.
With love to everyone, Amy

THANK YOU for your kindness!

Or, if you prefer to just make a donation, a check could be made out to either Kristi McMaster or Jeremy McMaster, and mailed to the following address:
1564 A Fitzgerald #159
Pinole, CA 94564

Or you can donate by using your credit card or a PayPal account by clicking this button:


These updates are in REVERSE chronological order (most recent at the top).

June 8, 2009:

Buffalo made it up from San Diego with Heddie yesterday to visit Don. We got him up in the reclining wheelchair for the visit, and took him out into the sunshine. It was a pleasant visit. Paula Chambers and Diane Longbo showed up late in the afternoon with home cooked Moroccan food (Paula made it). Don ate 80% of his dinner (in the dining room), and that's the most I had seen him eat in several days. He even ate the lamb, and he hasn't been wanting meats for awhile. Jeremy and I got him situated for nightime, and Diane stayed with him through the night. She said he slept very peacefully and restful (unlike the previous 2 somewhat restless nights).

Today, Don has refused to eat breakfast, lunch, or dinner. He has taken his medications in applesauce and eaten some fruit, and taken small drinks. Don has been completely non-verbal today, and is getting increasingly "gurgly" sounding as fluid gets in and around his lungs. Even after his breathing treatments, his breathing is difficult. Buffy, Heddie, Diane and Jeremy have been there again today, kept company by a few other visitors here and there.

It seems that Don is letting go more than ever, and we are thinking that he will pass in a matter of days (if that). If you have been putting off a visit, please go soon.

We will, of course, continue to keep you updated.

Thank you!


June 6, 2009:

Don's been declining with his physical abilities and strength. He is no longer able to help at all with getting out of bed. The physical therapist is unsure that Don can keep himself upright in the wheelchair anymore, so if we get him up, it needs to be in the "Geri-chair," which is a fancy name for a wheeled recliner. It also takes a mechanical lift to get him from the bed to the chair and vice-versa now.

Don spends most of the time (day and night) asleep, but will usually wake up if you say his name, or try to wake him. Depending on how sleepy he actually is at the moment, he may be non-verbal with you (but will use expressions, nods, etc), or he may carry on a limited conversation with you. He is more likely to talk to you if you offer him thickened water (or juice) to drink first.

Don now gets AZO Cranberry daily (the kind with extra vitamin C and pro-biotics). For more info:

To help him have a more restful sleep at night, Don has 6mg Melatonin and 1 Calms Forte pill ordered at bedtime now. The Calms Forte has natural ingredients that help treat sleeplessness, restlestness, anxiety, and nervousness. For more info about it:

We no longer need the pads on the floor next to the bed, since Don can barely help turn himself in bed, he is not going to be climbing out.

Don has been talking more often in his sleep with people who have already passed on, especially his mother.


June 4, 2009:

I tried to see if Don could return to Baypoint on Wednesday (June 3), but the doctor was saying that he wanted to keep him one more night on the IV antibiotics. This made sense, especially when we confirmed that the skilled nursing facility is not able to accommodate round-the-clock IV antibiotics (he can take antibiotics in the form of pills). The nursing staff (and nurse assistants) at Eden Medical Center were all very helpful for Don and his "entourage." When we found out that he was staying another night, they were finally able to move him to a private room. We did; however, have an issue with one of the discharge planners. She came in (after I asked for her 3 times) with negative energy just pouring off of her--no smile, not friendly what-so-ever, and basically was putting road blocks up for us, instead of guiding our path. After finding out that we were staying, and knowing that we'd need to coordinate with a discharge planner the next day, I went to the director of the unit to discuss the interactions we'd had with the discharge planner, and see if we could just have someone else the next day. The director (Marta) was very concerned and took lots of notes about what I said. She also thanked me for coming forward, saying that I was confirming a suspicion she'd had, but usually no one comes forward to express concern about this sort of thing. Marta reassured me that we would have a different discharge planner the next day, and she apologized for our having to deal with this sort of thing on top of everything else. She also said that she was emailing a few people about the incident. The next day, I was asked to have a brief conference with the head of the department for the case workers. She was also very nice, accommodating and apologetic. She brought our new discharge planner to Don's room, and it was all good.

Don had a talkative and all-around "good day" on Wednesday, but Don had a rough night that night. Annye stayed with him, and she said he was very restless--"busy hands," awake a lot. She also said that his blood sugars were reading over 400 (oops, that might be from all that cranberry juice). When Jeremy and I got there mid-morning today, he was finally sleeping, but difficult to rouse. I did get him to eat about 1/2 his lunch just before the transport team showed up to move him back to Baypoint in Hayward. I got to ride along with him in the ambulance, and Don slept the whole way (Jeremy took the car). Don even slept through the move from the gurney to the bed! They weighed him then, and he is currently at 286 lbs (down from 309 lbs when he was first admitted in Napa exactly 3 weeks ago today).

Don slept through most of the afternoon, and was non-verbal most of the day. This evening (Thursday), Anna and Hakim joined us with Don at dinnertime, and we did the Thursday tradition of the telling of Mushkel Gushka, then 7 Mullah Nasrudin stories, then listened to nice music (Ross Daly on the CD player). Don was awake more for all this, and seemed to be enjoying it all. Hakim is staying with him tonight, Jeremy will be there first thing in the morning (I will either be at work then, or at the Social Security office AGAIN).

Oh, even after they said they were holding Don's bed, they still took down EVERYTHING that was up in his room. I spent most of the afternoon putting it all back up. I hope nothing is missing, it seemed that we had it all, but geepers! Luckily Don is still in ROOM 2, same phone number too.

Thank you to everyone for your cards/pictures--Don's room is bright and colorful. Thank you everyone for your emails/letters--Don has lots of sweet stories and messages to read through and have read to him. Thank you everyone for all the music/conversation/caretaking you've brought to Don--he is surrounded by love, having wonderful care for his needs, and special moments during his last days. Thank you everyone for your donations and coffee fundraising support--Don's bills (previous and current) are getting paid, and other measures of comfort are now accessible to him. Thanks to you all for reading all of this, and being one big amazingly wonderful family. :)


June 2, 2009:

Don had a restful night on the 1st, with Graham and Lucia at his bedside. The next day (June 2) was a "waiting" day. We had to wait 4 hours from the time I first asked for the doctor to come and see him till the doctor actually came. What upset me the most about that was that the doctor said he'd have to see Don first before changing his diet from NPO (nothing to eat or drink) to the diet that he has been getting (soft, diabetic, thickened liquids); and Don hadn't eaten since lunch time the day before. The doctor was very thorough though, and listened to what all I was concerned about, and what all I was asking to have ordered (and actually ordered it). The nurses changed shifts then, so it was late afternoon before we at least got some jello, then the dinner tray. Don only ate about 1/5 of his dinner, but seemed happy with what he had. I was very happy to see that they sent thickened cranberry juice with his meal. We were able to get a few more of those to keep at the bedside.

The doctor said that he wants to keep Don at the hospital at least one more night, and then we'll see about the possibility of a transfer back to the skilled nursing facility tomorrow (June 3, 2009). I have no idea what time that would be, but if it happens, I'm sure I'll find out only 30 minutes or so prior to it happening. Luckily the hospital and skilled nursing facility are about 3 miles apart, so anyone on their way to see him at the hospital could easily just go to the skilled nursing facility. One way to check, if you are on your way for a visit (if you don't have access to my Facebook updates during the day), is to call Don's room. The number is: (510) 889-5038. Then ask for room 4407b.

Don's medical status is so much more improved today. When I walked in, they were getting his vital signs, and those readings were all fantastic. Don was still needing extra oxygen, but he's not fussing with it as much as he has before. For the first part of the day, Don was non-verbal until Casey Jones called. I told Casey that I'd put the phone up to Don's ear, and he could then tell him whatever, but that Don wouldn't say anything back. Well boy did Don make a liar out of me! He started carrying on a full (alert and mostly oriented) conversation! Then Don talked to Jeremy on the phone, and Jeremy told him about the trials of single serve chai that he was working on (this is something they've been talking about over the last year). Don got very excited, and carried on a regular conversation about it with Jeremy, going on about how good this news is to him. Don was able to talk to several other people on the phone in the day, but by around 8pm, he was getting fairly tired and more confused (thus the conversations were not so smooth).

Don had a roommate for most of the day, but now that guy moved across the hall, so hopefully Don will have the room to himself for another night. Renee DeLaPrade visited with Magenta and a friend of theirs. Renee played the accordion for Don and his room mate, and they both loved it (so did some of the neighboring patient rooms!). Magenta brought her 12 week old baby, and Don really loved seeing the baby. He gave the baby a kiss (along with all the girls too).

Juanita was with Don when I left (her and Annye retrieved his music from the skilled nursing facility). Lucia and Graham are planning to be with Don again tonight.

I will update on Facebook again tomorrow.

Oh, and I want to apologize for those who have called me and I miss your call. Sometimes I'm tied up with Don's care, on the phone already, in the bathroom, out of cell reception (like in the cafeteria), or driving.

Thanks again to everyone!


June 1, 2009 part 2:

Don is stable in room 4407 at Eden Medical Center ( Visiting hours are 11am to 8pm. He has a severe bladder infection, and a mild case of pnuemonia. It turns out that he does NOT have sepsis (infection that has spread over the entire body). Don was also severely dehydrated, and received 4 liters of fluid IV in the ER. He is now on a slower IV fluid drip, and two IV antibiotics. Graham and Lucia are staying the night at his bedside. (thank you!!)

The goal is hopefully the skilled nursing facility will feel comfortable giving the IV treatments, and maybe we can get Don transferred back there as soon as possible, so it is a more relaxed environment for him and family/friends. I will update this tomorrow (probly first on Facebook, then on here).

Thank you everyone for your support!!!


June 1, 2009 part 1:

I just received word from Baypoint Healthcare Center that Don is being transferred to Eden Medical Center in Castro Valley due to a highly elevated WBC (white blood cell count--it's a lab that usually is an indicator for infection). I was able to speak directly with Don's doctor from Baypoint, and he said that if Don is at the hospital, Don can be treated with IV antibiotics to get the infection under control, and increase Don's comfort level for whatever time he has left with us. I will update on Facebook (using my cell phone) when I get any further information. This is all I know at this exact moment (3:30pm). To locate Eden Medical Center:


May 27, 2009:

Don has been doing well so far this week.  I had a scheduled care conference with a couple members of his care team at Bay Point on Tuesday.  We discussed Don's current medical status, what options are going to be open to us as his medical status changes, and changes I wanted to see in his current medication options. 

Don’s current medical status:  Don has an untreatable tumor in the right side of his brain that is growing.  This is causing some swelling around his right eye.  Because the right side of the brain controls the left side of the body, Don’s showing some physical impairment on his left side.  These impairments include: heavy eyelid, slumping to the left while sitting in bed, little control over his left leg (especially when trying to stand), and decreased coordination with his left hand (unfortunately, Don is left handed).  Don also seems to be having trouble reading things more often (example—he has been reading his balloon each morning, and saying “happy birthday!”  This morning, when he looked at his balloon, he read it to say “happy burrito day!”). 

Don’s lungs continue to have the fluid around them, making breathing more difficult for him.  He continues to have his oxygen by nasal cannula in the day time, and by mask at night time (because he is a mouth breather while asleep).  Without the oxygen, his "oxygen saturation" levels quickly drop into the 80s (normal is 95 to 100), he turns blue, becomes more "distant" and confused. There are also studies that show that low oxygen levels can cause restlessness. Don has been getting nebulizer treatments over the past couple days to help clear up his airways, and is now also getting cough syrup (as needed).  We are keeping a log on the wall above his oxygen, so we know if it’s been long enough that we can ask for another breathing treatment or cough syrup dose—if Don seems like he needs it (he can have them every 4 hours).  Don’s lungs are less congested sounding when he gets up to the wheelchair.  We are trying to make sure he gets out of bed at least once a day for now.

Don continues to tell us that he is not in pain, except for when he transfers from bed to wheelchair and vice-versa.  Once he is transferred, he is comfortable.  Don has been having a fair amount of lucid moments, but doesn’t say a whole lot.  Yesterday, he enjoyed getting a real shower in a shower chair; then an afternoon outside with me, Jeremy, Sue Draheim and Suzy Thompson (playing their fiddles).  In the evening, Jeremy and I ate dinner with Don in the dining hall (Jeremy went to get us food, and brought it back).  It was a pleasant meal, that hopefully felt more "normal" for Don.

After dinner, we helped Don get ready for bed, and he had Melatonin for the third night, except this time we got the dose increased to 6mg.  He fell asleep pretty quickly, and Graham sat with him in the night.  Graham said that this was Don’s most restful night yet, and feels that the Melatonin makes a big difference (we’ve been asking the nurses not to give Ativan the last 3 nights to give the Melatonin a chance to work on it’s own).

light-hearted notes: Don has a white-board that we write the day/date on, and he is able to read it from bed.  He asked to read his emails yesterday, and seemed to be able to focus more on the pages for a little bit.  Don now has a little stuffed animal frog that makes croaky sounds when its hand is squeezed--we named it “Bob Ricker.”  Don finally got the button pushed yesterday to make the noises, and then he kept pushing it, lol.  I’m thinking that the better nights that Don has been having (on Melatonin) are contributing to his better days. The day nurse today (Victor) is a nurse that has been taking care of Don frequently, and he said that Don seemed more relaxed and able to follow direction easier today than on previous days that he has cared for him (amazing what a good night's rest will do for a person!).

Outlook:  To clarify, Don originally had orders for hospice care, but those were changed to comfort care when he transferred to Bay Point.  This change allowed Bay Point to offer him more services and work with him while he still has a fair amount of functionality (speech/swallowing therapy, physical therapy, etc).  When his health brings him to the point of needing hospice care, we might be able to have a hospice team follow Don while he is at Bay Point.  They are checking to see if this is covered with his Medi-Cal.  If it is, this will mean that the hospice service will provide someone to be at Don’s bedside 24/7, and they will help guide his end of life care.  If it’s not covered, we can continue with his comfort care, and adjust his treatments/medications as needed.  After discussing Don’s condition with the Bay Point staff, and asking their opinion based on their experiences with people in similar situations, it seems likely that Don may have a few more weeks with us, and maybe a couple months (that’s being optimistic, especially with his lung issues).  They said that we’ll know he’s getting closer to needing hospice type care when he becomes even less mobile, is barely eating, etc.

Lately there have been some frantic emails and phone calls worrying that Don has already passed away.  Please know that we will let everyone know when that time comes. You will be notified by myself or from someone else in Don's immediate support network, or it will be posted on this webpage that you are reading now ( as soon as possible.

Also please know that Don will be donating his body to science (as he requested over a year ago). After he passes we will most likely need some time to get personal things in order and will let everyone know when a memorial will take place. It may take awhile for that to be organized. Please be patient and know we will post details for that as well, as soon as we know about where and when it will take place. In the meantime we can reach out to each other and remember the Mullah with love and fond memories in our hearts. 

THANK YOU to everyone for all of your good thoughts and support during this time. I've said it before, but I like saying it again: What an amazing group of friends!!!


May 25, 2009:

Don’s early birthday party on Saturday, May 23, went really well.  Don wore his fancy new shirt from the Fischbachs, and got a styling new hat.  Throughout the day/evening there were probly around a hundred visitors.  The festivities started on the large back patio area, where we set up a coffeehouse and grill area.  Then we moved Don and some music and dance to the main dining hall inside (still some outside festivities going on).  The staff all seemed very happy that we were there, and continued to be very accommodating for us.  The residents that joined us in the dining hall seemed to enjoy everything that was happening—some of them dancing in their wheelchairs!!  Don was surrounded by love, and didn’t seem to fidget much at all with his oxygen, lol!  At the end of the day, Don got settled into his bed, and a few friends visited with him in his room, with Ric LaShever, Brennan, and Hakim staying the night with him.  Be sure to check out the party pictures!

Yesterday (May 24, 2009),
Don had a sleepy day, but an alert and happy evening.  Jeremy and I sat with him, Lucia, and Hakim in the dining hall, while we all watched Chris Caswell and Devin Caswell play music and tell stories.  The other residents enjoyed the music too.  A woman named Carol, who had been visiting with us, was being wheeled from the music for bed, and she started crying because she didn’t want to leave.  Luckily they quickly turned her back around and let her watch Chris finish his performance on the harp.  Carol then told us that she was never going to forget this special evening with us. (awww!!!)  PICS HERE

After the Caswells left, Jeremy and I and Lucia visited with Don in the dining hall for a little longer (per Don’s request), then he was ready to go back to his room.  We all got him ready for bed (with the nurses aid Ranji’s help), and then he had his melatonin (first night trying this).  I took a pie out to the staff that Jeremy had baked earlier.  They proceeded to tell me that they have all been thoroughly enjoying Don and his family and friends.  They said that we (as a collective) are the nicest people that they’ve ever had come to Baypoint, and they are so happy we are here.  (awwww!!). 

Jeremy and I left for home, with Lucia staying over.  Oh, when we got out to the parking lot, we saw two cats hanging out under Don’s window, lol!  Anyway, Lucia said that Don did well with the Melatonin, just having the usual occasional needing to urinate (but willing to use the urinal, and not trying to climb out of bed), and of course, a bit of fussing with the oxygen.  Other than that, he slept peacefully. 

Thank you again to everyone for all your love and support!


May 21, 2009 (part 2):

I heard from Brian Steeger that he and Marianne and Wendy Newell got to spend a bit of time with Don today, playing music. Sounded like it went well.

I spoke with Keith this morning, and he said Don had a decent night, and was being fed breakfast (at 7:30am) by a female nursing assistant (he really likes when females feed him, but he can still do it himself most of the time). The night nurse tonight told me that Don ate all of his dinner, and he was just peacefully sitting in bed awake at the moment (8pm).

Graham is actually spending the night with Don tonight, and Ric will be there tomorrow. I've set up a Facebook group page for people participating in Don's caretaking. I'm hoping this will better streamline setting up who is staying on which nights, and be a place to discuss tips and information about taking care of Don. Here's a link to the page: Don's Caretaking Group Page

I have to work a 12 hour day shift tomorrow, so I won't be up there, but Jeremy will most likely be with Don tomorrow. Hopefully some more visitors will make it to see them.

I think Jeremy might be a good person to coordinate through for bringing food and drinks for Saturday's party. I think we still have lots of generic lemon-lime soda and water bottles. It seems that we are probly going to be setting up an impromptu coffeehouse, maybe even hang a sign. Lucas has said that he can bring some meat, but I'm not sure how much. Again, if anyone can bring food, please call Jeremy (510) 379-8522, and maybe we can get it coordinated.

Thank you!!!!


May 21, 2009 (part 1):

I'm on my way into work for a 12 hour shift, and Jeremy is going to be headed to Santa Cruz for school all day (he won't get home until midnight since his advanced culinary class is a fine dining restaurant). We are hoping that Don will still have visitors throughout the day (please, and thank you!!!).

Something that Don needs:

a fan--I didn't realize I should have grabbed one from his place. Luckily we can open both of the windows in his room, so it's not stuffy or anything like that.

a LARGE print daily peel-off calendar for the wall (like what they had in the hospital rooms) so Don will continue to be able to answer the question "do you know what day it is?"

a few more CDs, especially of music from this talented group of friends that Don is likely to recognize and feel more "at home" with.

visits from friends like you.

Anything that is brought in to leave for Don (like a fan) should be labeled with his name (even if it's on a piece of tape). Also, if it's of value, it should be mentioned to the charge nurse so that it can be added to his "inventory list."

Thank you again for all of your love and support!


May 20, 2009:

I would like to apologize for not having a charged phone the last two days, and not getting this update online sooner.  I hope many of you got to see the updates that Jeremy put on Facebook (Teahouse page) today.

The short version:
Don seemed to still be getting a little worse each day the last couple days at the hospital, but has now transferred to a skilled nursing facility in Hayward; and he had a very good day!  You can find out about where Don is HERE.  He is now in room #2 (read the long version of this below, to find out why).  His phone number is (510) 300-3881 (the phone will be hooked up in a couple days, as it's one of the services that Jeremy and I are setting up to pay out of pocket). 

The longer version:
Tuesday (May 19) proved to be a frustrating day dealing with various Medi-Cal related agencies and issues.  There was a lot of running around Napa involved as well, but the day ended with hope that there would be a contract set up by the next morning between Don’s Medi-Cal group in Napa County and the skilled nursing facility in Alameda County.  Don had had a rough night (even with over-night sitters), and continued his “little bit worse each day” thing.  I also noticed that he wasn’t eating all of the food on his tray at meal times.  Don did have a nice stream of visitors throughout the day that seemed to have positive influences for him.

Today (May 20), Keith Oshins and Sara Goodman met me at the hospital early in the morning for the possibility of transporting Don (which was taking place in my car, and I needed another set of eyes on Don while I drove).  A nice woman named “Tess” from Santa Rosa showed up too, catching Don before he moved a little further from her.  I called the skilled nursing facility’s admissions person (Heena) to see if we were ready for transport, and she said not yet.  She explained that although the Medi-Cal group did fax a contract to the skilled nursing facility, it was not the terms that they had agreed upon over the phone, so they were back to contract negotiations.  She went on to say that it may not be until the end of the day before we knew if we could move Don.  I swear I could feel my blood pressure go up!  I calmly, but in a very straight-forward manner told her that we needed to try to get this pushed through that morning, and I explained the multiple reasons why.  She said she would start pestering them to make it happen. 

An hour and a bit later, the hospital social worker walked in the room and said “they have a contract, we have a ‘go’ for discharge!”  I was so relieved I didn’t know if I should laugh or cry.  I thanked him, and got to work with one of the nurses getting Don cleaned up, dressed, and ready to go.  It all happened fairly fast after that, and Don did well transferring from the wheel chair into my car.  We had cute little portable oxygen tanks to take with us.  Keith rode in the back to watch Don, and we listened to the Beatles the whole way (Don sang along on a few occasions).  We also let Don have a little bit of his Snuff (inhaled tobacco) that he had been craving for the past week.  Don had such a great car trip!  He called us by name and made sense the whole way!!!  Keith said that Don was in one of his “homes” being on the road.

When we got to the skilled nursing facility, we were shown to room #5, and we began to unpack.  The room was a 2 bed room (as opposed to a 3 bed or 4 bed room).  I had asked for either this or a private room, and Jeremy and I had seen a 2 bed room that was empty on our tour last Sunday, so I specifically asked about that—and that’s what we were getting.  I had tried to explain that Don would be getting a very large number of guests, so it would be better for everyone this way.  As we were setting up, and after a sea of paper work, I asked to see the activities director about a party for Don for this Saturday.  The activities director is named Ron, and he was open to the idea of the party, but wasn’t sure about the bbq being used.  I told him that we were told that we could use it when we toured the place, and he said he’d check for us. 

In the meantime, the skilled nursing facility’s social worker stopped by to say “hello” to us.  Her name is Pat Rose, and Keith said that there were a few things about her that made him ask her if she had ever gone to the renaissance faire.  Her response:  “oh yes, many years ago, I had my first Chai there, and boy was that good!”  (I’m really not kidding, ask Keith!)  Keith’s jaw about hit the floor, he looked towards Don, and says “uh, do you know who this man, Don Brown is?” She was so excited when she got the whole picture.  Then I said “now you see why we were saying he’s going to have so many visitors?” and she says “OH yes!  You are right, he really needs a private room!”  Then I mentioned the party we were trying to get for Saturday, and how there’d probly be lots of people willing to play music and dance for the residents while they were here for the party. She got even more excited and went to talk to Ron, and check on some other things.  When she returned, she was ready to move us to a private room two doors down from the nurses station, and she said that not only could we have the short notice party, but we could use the grill, and she was having Ron show us an alternate outdoor entertaining area that we could use that would better accommodate larger numbers of people (where smoking is allowed too)!  They also said that they would really enjoy it if some of our party attendees would perform music and dance in the large dining hall for all the residents who wished to participate.

We proceeded to take down all that we had put up in room #5, then put it all back up in Don’s current room--#2.  He even has a private bathroom now!! (the other rooms not only share a bathroom with the roommate, but the connecting room of people too). 

I was still concerned about his bed and overnight situation though.  The skilled nursing facility had told us the day before that overnight guests were not allowed, and I was unsure that the bed that Don was in would be safe if he climbed out.  The bed has two short rails near the top and that’s it.  They said they don’t want to put him in a fully railed bed because of the chances of him climbing over the rails and hurting himself even more.  So they were putting padded mats on the floor on either side of the bed to help keep cushion him if he tried to get up.  The thing is, when those are used, the bed used is supposed to be the kind that will lower almost to the floor so that it’s like rolling off a mattress if the patient lands on them—and Don’s bed wasn’t one of those beds.  So I asked about just putting one of those beds in the new room when he transferred.  Turned out that they were out of that type of bed, but offered to put a “bed alarm” which senses if the person gets up, then alarms.  I said that we would definitely want that alarm; however, would it not make sense to allow an overnight guest at Don’s bedside to help watch him, since he was now in a private room and had this higher bed?  They agreed and gave us permission for overnight guests!!!  Woo hoo!!

Keith Oshins volunteered to stay for the first night (tonight), and we scrounged up a recliner for him (thank you!).  Ric LaShever has now volunteered for the next two nights (thank you!), and we’re hoping that he can have Brennan there too (there is only enough room to safely have one recliner though).

When it was time for dinner, Don ate everything on his tray!  Yay!!  I hadn’t seen him do that in a couple days.  And although he didn’t say too many things, everything that Don said was making sense, and he seemed very content.  We were playing lots of music for him on Jeremy’s computer and his boom box (he has CDs for us to leave on for him). After dinner, we got him in a hospital gown for sleeping, and his oxygen switched from nasal cannula to face mask (that fits him now too).  Don was starting to nod off, so we told him that Jeremy and I were going to let him sleep, and Keith was going to catch some shut eye next to him.  Don grabbed my hand and pulled me close to him, smiled, then looked like he was going to cry and said “Thank you.” 


May 19, 2009:

I am planning to be in Napa all day (hopefully transferring Don, but I'm not holding my breath). While I am up there, I am unable to put updates here, but I will put it on my Facebook status if we get to be in the process of moving Don.

Then when I get home, I will put all the details here (it is still unclear which facility we will be able to transfer to, as Medi-Cal continues to be "difficult.")

From what I understand, there was someone who was able to stay the night with Don last night. I will find out more when I get there, but I need to get on the road (it's almost 7am).


May 18, 2009 PART 3:

After much "back and forth" with the hospital social worker, the skilled nursing facility admissions department, and the Napa County Medi-Cal provider, I've found that this is going to be a bit of a process to transfer Don out of Napa County. He is definitely not going today, and may or may not go tomorrow. I will keep you updated as I find these things out.

I was planning to make it up to Napa today, but I'm thinking I will probly end up going tomorrow (morning). I suppose my plans have to remain flexible as this is worked out. It's comforting to know that so many of you are arranging your schedules so that you can visit Don right now. Thank you!!!

Also, thanks to all who have sent emails--I'm putting them in a binder that Don will be able to flip through. :)


May 18, 2009 PART 2:

Recommendations for visiting Don or sending well wishes to Don

To email Don, you could use the address, and we will print the email and give it to him (probly having to read it to him).

To write to Don, or send something non-perishable, we will take it to him if you send it to this address:
Teahouse of the Mullah
P.O. Box 1135
Newark, CA  94560

For now, you can visit Don at Queen of the Valley Hospital in Napa, CA.  It is on Trancas, and Don is in room 2218b.  You can call Don’s room (Don probly can’t answer, but if a visitor is there, they can), and the number is (707) 252-4411 ext. 2219

Please remember that the hospital staff is not legally allowed to give out information about Don, except for those designated to receive the information.  Don’s nurse pointed out that it takes away from Don’s care if his nurses are being bombarded by well-meaning friends with questions about Don’s condition.  So, please, if you have questions about Don’s care, call me or Jeremy (we are designated as durable power of attorney on Don’s Advanced Directive), or read the updates here. 

If you’d like to take something (or send something) for Don, we recommend something to fiddle with in his hands--it will keep him busy, and not pulling off his oxygen and such.  Don also likes to look at greeting cards and read them several times (he is still able to read them for now).   In addition, he does very well when there is music!! :) The hospital does not mind music being played in Don’s room, although I would not bring bag pipes or a hurdy gurdy, out of respect for the rest of the other patients. 

Don is not in pain (unless he stands up), and says some fun things and enjoys a good laugh with everyone right now.

Thank you everyone for your support and love for Don, that is proving to be the best medicine for him right now!


May 18, 2009 PART 1:

Yesterday, May 17, Jeremy and I toured 5 skilled nursing facilities in Hayward and Fremont.  It was good that we were looking on a Sunday evening, because it’s a chance to see how they keep the place when all the bosses are not around.  Two of the places in Hayward were very discouraging, and one of them we almost ran screaming from!  FYI (in case anyone else looks for a place for a loved one in the future) the two that we don’t recommend at all are “Bethesda Home,” and “St Anthony Healthcare Center.”  The second one was the worse one.  We’re going to talk today with the admission/administrative people at the ones that we did like, and we will definitely let you all know as soon as we have it set up.

Jeremy and I decided not to visit Don in Napa yesterday since we heard that lots of other people would be there with him, and that gave us a chance to look for a facility down here.  I also got an 8hour shift in at work, and Jeremy got some homework done.  From what we heard, Don did really well with all of his visitors, and it was very positive for everyone. 

I had spoken to his nurse in the morning, yesterday, and he said that Don had had another rough night, and seemed to be a little worse off that morning than the previous morning.  I received a call from the main doctor that day to confirm that all the doctors on Don’s team were in agreement that Don’s condition is getting worse and is not treatable.  She stressed that we needed to find a skilled nursing facility that Don could be transferred to within the next day or so.  We also reviewed that Don’s care there would cover his meals, insulin, oxygen, and assistance with “Activities of Daily Living.”  It is still very unclear if Don’s time left will be days, weeks, or maybe months.

I just got off the phone a little bit ago with the nurse that is taking care of Don today, and she said that Don is having a nice morning for once.  We both believe that this is because Wendy Bird and Hakim stayed the night at Don’s bedside, taking turns watching him (and comforting him).  He finally had what his nurse called “a peaceful night.”  So hopefully today, since he’s not starting out from a rough night, he will have a really good day (great day to go visit him!!!).  Don’s nurse also mentioned that if I could remind all of the visitors that the hospital staff is not legally allowed to give out information about Don, except for those designated to receive the information.  She also pointed out that it takes away from Don’s care if his nurses are being bombarded by well-meaning friends with questions about Don’s condition.  So, please, if you have questions about Don’s care, call me or Jeremy (we are designated as durable power of attorney on Don’s Advanced Directive), or read the updates here.

I was originally planning to be there this morning, but after the call from the doctor yesterday, it seems that it is best that I’m down in the East Bay for now, making arrangements for Don’s skilled nursing facility.  I will keep you all updated as I get things in order, and as I receive the information.

Thank you everyone for your outpouring of love to Don!!!


May 16, 2009:

Don has had a big change in his mental and physical status suddenly this past week.  He went on a trip to Oregon and Washington during the first week of May, and said he had started feeling tired on the first day of his trip.  He said that he got progressively weaker as the trip went on, and that he fell twice on the train coming home.  In the few days that he was home, he said that he had been falling down, and not eating very much. 

When Jeremy and I went to Don’s house to take him to see the doctor, he was sitting on the couch with his walker in front of him, and said he had been there since the day before, trying to figure out how to stand up.  It took both of us (plus the walker) to get him up and across the room to the bathroom to get ready to go.  With the assistance of Uncle Bob and Mark the house-keeper, we got Don down the stairs and to the doctor’s office.  The doctor spoke with us and Don (as Don was getting progressively more confused), and had Don admitted to the hospital (this was Thursday, May 14).

Don’s oxygen levels were very low at the hospital, and they had to put him on oxygen.  They also ran a bunch of tests, checked his blood sugar, and fed him (he hadn’t eaten in over a day, since he was stuck on his couch).  Don was also moved to a higher acuity unit, so that the nurse could spend more time with him. 

The test results have shown that Don has regained the fluid around his lungs that had previously collected and been drained.  This is a big part of why his oxygen levels were so low.  The other tests (chest x-ray, CAT scan, MRI) show that although he continues to be in remission with the cancer in his lungs, the cancer that spread to his brain has spread further, and a mass (tumor) has grown fairly large on the right side of his brain.  The cancer doctor told us that chemotherapy cannot reach this cancer in the brain, and radiation therapy will also not be able to treat these tumors at this stage (especially while he fights fluid around his lungs).

Don has been recommended for hospice care now (end of life care).   Don will continue to be at Queen of the Valley hospital until at least Monday, but will likely be transferred on Tuesday or Wednesday.   The plan is to have him moved to a skilled nursing facility in the East Bay (probly in/near the Union City/Hayward/Fremont area), and close to BART so that many of his friends can visit him in his final days, and so Jeremy and I can be close to take care of him.  When we figure out where he is going to be, we will let everyone know (hopefully we’ll know this Monday or Tuesday).  

To prepare you for what to expect if you visit Don, his level of confusion has continued to grow each day, with his nights being the worst.  His days have been like a recovery from the nights, and his best times have been from around 4:30pm to 7:30pm (this is just what I noticed in the last 3 days).  Most of the time he is not able to answer questions, either saying something totally unrelated, or just saying “I don’t know.”  He is pleasantly confused though, being very positive, upbeat, friendly, agreeable, and funny.  He enjoys listening to music, both recorded and live. 

Jeremy and I played an album by David and Barbara Brown; Ernie, Deb and Melissa Fischbach; and Brian and Marianne Steeger called “Zincali,” with tunes similar to what was played on his stage when he had a Coffeehouse at the Renaissance Faire.  Don seemed to enjoy the music quite a bit, but also started telling us that we needed to get the props out on the stage right away.

This past night (Saturday), David Wagner came for a visit with his guitar.  Don instantly perked up when David started playing, and then Don started singing along when he recognized the Johnny Cash song.  Just prior to David’s playing, Don had asked him if the chicken was done for dinner, and if it was getting out on time.

We’ll let you know as we get the rest of the information early this week.  Everyone take care!


April 25, 2009:

Don's health update from Don directly:

Not much more to report really.  No news is good news.  I had fluid drained from the area around my lungs.  When it was tested it looked pretty benign. Healthy for fluid that shouldn't be there in a perfect world.  Went back last week after an X-ray and Dr. Carlson said the fluid level is stable, maybe even shrinking a bit. I will go back and visit him periodically, as I do with most of my Doctors [and I have quite a stable by now.]  Carlson said my weight doesn't help and I should exercise more.  Hard to do if going up my stairs leaves me out of breath. I have lost 50 pounds or more since this whole thing began last April, as my appetite has shrunk.
I got a three month scholarship to The Wellness Center, a state of the art fitness center attached to Queen of the Valley Hospital complex.  I go in and do laps in the lap pool,  loll around chatting with all the other old coots in the warm pool, then finish off in the Jacuzzi. When the scholarship ends on 30 June my pool here at the condo will be nice and warm. Water exercise is most comfortable for me.

I feel blessed.  If you have to get Cancer, Napa County is a good place to get it.  I have been treated well by all the health care professionals and social workers who have had a hand in my treatment.  I have a good relationship with my Doctors and like and respect them all.



March 20, 2009:

Don's health update from Don directly:

20 March, Persian New Year, the first day of Spring
Have had trouble with my breath lately, shortness of breath,  so on my last visit, in late February, Dr Ari, my Oncologist, referred me to Dr Carlson, who specializes in Pulmonary Medicine. We had a preliminary appointment  on 4 March.  He gave me a new medicine to inhale, Spiriva, whatever that is (note from Kristi--Spiriva is a long-acting, daily medicine that will relax Don's lung tissue, so he can breath easier), recommended that I lose weight [I am down 40 lb since Last April, since this current adventure began], exercise [kind of hard, since climbing my stairs leaves me breathless], and we made an appointment for after my CT scan, which happened this Monday.
I went to visit Dr. Carlson today, and the results of the CT scan were mixed.  On the one hand the mass, which is in the right upper lobe of my lung, has shrunk since the last scan and there are no signs of the Cancer recurring. On the other  there is a fluid buildup around my right lung, which impairs my breathing.  I am scheduled to go into hospital Monday morning so he can drain fluid to relieve the pressure on my lung. This is a simple procedure and only takes a short time. I should be in and out within  2 hours.  I have a follow up visit later in the week after the fluid is tested. More later.
Happy New Year.


January 15, 2009:

Note from Kristi: Don made it to the Dickens Fair on a couple of occasions, and made it to my and Jeremy's wedding January 3rd. Don has typed his own health update this time, so here it is in his own words:

In December I had a lung XRay, and it worried Dr Ari a bit.  It looked as if the initial tumor that I was treated for, the one in my right lung, was growing again.  The good Doctor scheduled me for a Cat Scan and another round of chemotherapy, starting in early January.

The day before I was scheduled to begin my next round of chemo I had an appointment with Dr Ari, who had good news.  The Cat Scan gave a better view of my condition, and he found I was still in remission. No chemo after all.

I think that last round of radiation, the one to my brain, did quite a job of knocking me on my butt.  I had quite an invasion of different fungus.  What with modern medicine and holistic remedies, I battled back from that.  But I have lost my appetite for food, things don't taste so good anymore,  I have trouble figuring out what I want to eat.  But the good part of that is I am losing weight.  Don't worry, though, I am not wasting away. not yet. Down to 315 lb from 360 last April. 

I am trying to get into the Wellness Center  at least a couple of times a week, with its exercise machines, But especially with it's lap pool, warm pool, and it's spa. What a blessing.

-Don Brown


October 28, 2008:

Mid-October, Don had an MRI of his brain that showed small cancer lesions had formed there.  These were not there on the previous MRI of the brain.  A ten day radiation therapy treatment schedule was started immediately.  Because the lesions are small and few, and seem to be caught early, the radiation is expected to effectively treat the cancer in his brain.

Now that Don has completed his course of chemotherapy and radiation on his chest, the doctors performed a follow up CAT scan of his lungs.  On October 24, Don got the results of his CAT scan, and his doctor told him that the cancer in his lungs can now be considered in remission. (YAY!!!)  This cancer most commonly spreads from the lungs to the brain, bone, and liver.  The CAT scan showed that Don’s bones and liver continue to be cancer-free. (YAY!!!)  The doctor said that given Don’s condition, this is a best case scenario, and excellent news. Don will have follow up visits in the future to watch for any recurrence or spread of cancer.

Don continues to be in good spirits, and has been working on his poetry and writing down stories from his life.

Don is very grateful to all who have wished him well.    Thank you, thank you, thank you!!!


Also on October 28, 2008: Don's "Health Update Poem" by Don Brown


Six hours sleep.
Three hours on the computer.

Fasting sugar 120.
The best in a long time.
A long time.

Radiation of head worked.
Hair coming out in big clumps.
Almost all gone now.
Bald Mullah.
My grandpa bald all his life.
Rheumatic fever.
That man could smile.
He taught me how to blow my nose
Without a hankie.

Time for breakfast now.
I feel GOOD.

~Don Brown 10/28/2008


September 20, 2008:

Don finished with his rounds of chemotherapy and chest radiation about a month ago, and is to get a scan of his chest in mid-October to see if he needs more chemotherapy or chest radiation.  In the meantime,  Don will meet with a radiologist to set up radiation of his brain to prevent the spread of cancer to his brain (his earlier brain scans were negative for cancer).  This is a standard practice with lung cancer patients, as it is all too common for the cancer to move into the brain. 

Don also just had cataract surgery this past Thursday, and says that although the experience was rather “trippy,” it went well.  He will be getting new eyeglasses soon.

Don continues to be in great spirits, and persists in showing just how tough he is, with the odds he has overcome so far.  Thank you to all who have sent him their love, and supported him through the coffee fundraiser.  I really do feel that the love from all of us has been making a difference for Don. :)


July 4, 2008:

Don went with me and Jeremy to a bbq at a winery in Napa. It was quite a long day, very tiring for all of us, but Don did very well. We watched a croquet tournament, a softball game, and an impromptu Culann's Hounds performance.

This is on the wake of some very good news received on Tuesday, July 1, at Don's cancer doctor's office. Don's treatments are working! Don has completed 2 out of 4 rounds of chemotherapy, and has completed much of his radiation treatments. A CT scan (takes pictures of a person's "insides") performed at the end of the last week of June shows that most of the smaller cancer lesions that were previously seen scattered around on Don's lungs have disappeared. This scan is also showing that the main cancer mass has "substantially decreased in size." The doctor went on to say that if Don continues responding to the rest of his treatments at this rate, it is starting to look possible for his cancer to go into complete remission! This means that there would be no detectable signs of cancer, and Don would just have to have periodic check-ups to make sure that the cancer is not returning.

Although he continues to feel fairly well overall, Don has been having minor side effects in the past few weeks from his treatments. Hair loss is the main effect that he's noticed, although with all the hair he had to start with, he still appears to have a full covering of hair (just thinner). Don's also had some difficulties with chewing food, and some mild nausea episodes. All in all, he continues to handle the treatments remarkably well. Don has another round (3 day period) of chemotherapy coming up on or around July 15, and his final round is about a month after that.

Don continues to hang all the pictures and cards he's been receiving on his dining room wall. He is very thankful for all the positive support that so many people have sent his way.


May 27, 2008:

Don Brown completed his first cycle of chemotherapy last Thursday, May 22.  It seems that he’ll be getting it for 3 days in a row every month.  The next set is scheduled to start June 17.  He seemed to handle the first cycle very well.  He had no side effects at all until the weekend, when he began “just not feeling well in general.”  He has since began to feel better again.

Don was originally scheduled to start his radiation treatment today, Tuesday, May 27, but due to a poor CAT scan (picture of the "insides" to know where to focus the radiation), he has had it rescheduled for next week on Wednesday.  It seems that his radiation treatments will be a daily (M-F) occurrence for almost two months.  He will probly feel fine the first week or two, but then may start to face some side effects.

The hospital sends a van/bus to pick him up for treatments and take him home, which is good news.  The tips that people have sent in regards to alternative herbs and healing methods have been something that interests Don a lot, and he’s open to exploring this further.

He has been enjoying the cards and letters that arrive in the mail, and has them all taped up on the dining room wall.


May 15, 2008:

Don has a lung cancer mass that measures 8 x 5 x 3 cm. and is located near where the lung separates into two lobes. The cancer overlaps the airway of the right upper lobe of his lung, close to the pulmonary artery (main vessel that goes between heart and lungs, responsible for distributing oxygen to the entire body). There is also cancer in some lymph nodes in the chest, along with lesions in and outside of the right lung. The MRI showed no cancer or damage to the brain.
The type of lung cancer that Don has is called “small cell cancer.” This type of cancer, along with the location of the main mass means that Don will not be able to have surgery. This leaves the treatment options of chemotherapy and radiation therapy. Small cell cancer is extremely aggressive, and spreads fast. . . .
Don still seems upbeat and ready to face the challenges ahead.
Positive wishes, especially in the form of letters and cards will continue to be important for Don. He also enjoys pictures.
Thank you all for your love and support, this truly is an amazing group of friends.