Good, Bad, and Scarey

In Line at Mo's
in Lincoln City

 My Peeps

I have gotten a few emails and questions from my adoring fans lately asking why I haven't updated this blog for the past few weeks.  My answer:  nothing exciting to report, thankfully.

Pam is doing a little better all of the time.  She still feels far from good, still weak, still has tremors, and still tires easily, but she is doing a little more all of the time and her "bad days" are less frequent.  All is well.

But still, I have a very demanding public that needs to know stuff. Here goes:

Good News

• We went to the 3 day Willamette Country Music Festival. There was lots of RVs, people, country music, and heat. Lots of heat. Pam tolerated everything very well (although we had to seek refuge in the shade of some outhouses for a while), and we almost made it through to the bitter end.  As we were leaving late Sunday afternoon, my silent prayer was answered as Pam said "that was fun, but I don't want to do it again". 



After Climbing Steps
from the Beach

• The following weekend, we went to little Austin's Hawaiian First Birthday Luau Extravaganza.

• Over Labor Day Weekend, we went to Lincoln City on the Oregon Coast.  Lots of sand, people, and cars. (Bonus tip: Do not go to Lincoln City on Labor Day Weekend.) Pam rode her bike a little and took a long walk on the beach with me. We also went to a little art festival in Toledo. Lots of art, not so many people, one previously undiscovered brew pub.
• On Sept 3rd, Pam's Birthday, we met Jason, Alyssa, and Austin at the Rogue after we returned from Lincoln City. Had a great time. Little Austin gets cuter every day.  He is getting to be quite the ham bone. 

Three Guys Out on the Town

Bad News

Last Thursday evening, I received a phone call from my Dad.  A phone call from my Dad is always bad news, because he doesn't really believe in using the telephone for trivial matters. He told me that my Aunt Jan died unexpectedly at their home in Grangeville, Idaho. Just collapsed and died. It was quite a shock, because she was a very healthy, vibrant person.  Here is a link to her obit. I will really miss her. So, I drove to Grangeville Friday afternoon after I got through my noon meeting at work.  Pam really wanted to go, but she still isn't really well enough to make a trip like this, so I went solo. The funeral was on Wednesday, so I wasn't able to get back to PDX until Thursday. I think it is the longest we have been apart since she got leukemia. I was able to have a good visit with my sisters and parents.

Lots of tears, laughter, and relatives who look a lot older than they did in 1973. A lot older.

Scarey, but Good News

In between the events detailed above, Pam got a routine follow up bone marrow biopsy.  No big deal at this point, especially for me, because none of them have hurt me a bit. Pam has had 3 or 4 of these by now. Anyway, when the test results were finally made available on her electronic chart, they didn't look so good.

I wrote Dr. Holtan a note, asking her to explain the test results:

• Me: This test came back positive, and it was negative in past bone marrow biopsies. What does it mean?
• Dr. Holtan: The result is actually negative. It was entered into the system incorrectly by the lab. The scanned in result from the diagnostics company is clearly negative. I sent a message to the lab to correct it last week, but it looks like they have not gotten to it yet. Rest easy,
• Pam: Thank you for getting back so quickly. It was a bit of a worry, so now I know I don't have to be concerned. You're great, Dr. Holtan. Thank you for your care.

Publishing Schedule

I will continue to update this blog fairly semi-regularly, but feel free to participate in two-way communication.  Some options:

• Call me at 425 223 3385.  (My Google Voice number, it will always find me.)  This includes you, Dad. Or call Pam at 503 939 3106.
• Email me. (probably not you, Dad)
• Text me* or Pam
• Message me or Pam on facebook**. 
• Send a direct message to @HendersonPDX on Twitter***.

*I am not a huge fan of texting. It seems useful for a short message if I think the textee will be busy.  Not good for back and forth communication.  Hard to beat actually picking up the phone and talking to someone.
**Facebook actually kind of sucks. I don't like it. My sister, Chelle, is a Facebook Maven.  She knows everything that is useful and not useful to know about everyone because of Facebook.  I just can't get into it. I have an account, I look at it.
***Twitter rocks.

Abracadabra Rah Rah Ree

Cheer Squad and Magic

Matt and Patti are visiting from LA and we joined them for a barbeque at Vince and Nada's house. It was great to watch Pam having fun with her old high school buddies.

I think it went "Rah Rah Ree.... "
Something like that.
Pam Patti, Joni

As an added bonus, we had two variety acts:  Pam, Patti and Joni doing their old high school cheer routine and Matt the Magnificent doing some magic acts.  Matt has been studying close up magic, like card and coin tricks, at the Magic Castle in LA for about six months and he is Really Good.... I think he should just quit the whole Academy Award Winning movie sound editing thing and take the act on the road.  All he would need is a deck of cards and good sturdy card table. Maybe an old top hat to make him look a little eccentric.

Vamping

The Spooky Part:   I would have taken some pictures of Matt, but, almost like magic, my trusty cell phone camera ran out of power right at that instant... actually in mid-picture.  (I don't think it was a coincidence...  very spooky.

My phone losing power
In Mid Picture?
Can that even happen?

Biking Over Sellwood Bridge

Last week, I rode the Black Stallion on a 12 mile loop down the Eastside Esplanade, across the Sellwood Bridge, back up the west waterfront, then home.  It was really enjoyable.

I think I wrote earlier that the Sellwood Bridge was moved last year.  It seems incredible to me. Using hydraulic jacks, teflon pads covered with Dawn dish washing soap, and laser guidance to make sure they were not bending the bridge too much, and literally scooted it over onto new temporary supports.  Here is a time lapse video.

From the Sellwood Bridge

Counting Down for the Big Weekend

As I wrote earlier, we are have tickets to the Willamette Country Music Festival next weekend.  When we first bought the tickets a year ago, we were both confident Pam would be feeling well enough to go ... but over the past several months we were both having our doubts.  But, it is looking like our confidence was well placed. Everything is just getting better... she still has her real bad "skaky days" but they are less frequent. still needs to take a nap every day, but she is eating regularly and is doing more around the condo all of the time.

Later today, we are going to try to take a short bike ride together.  We will see how that goes.

Hard to believe that it has been over a year since this whole adventure started.

Green Boogers and the Black Stallion

Holly from Cliinicient
Creta and Hugo from Metro Sports Med
at Oba

Oba!

It has been a good week. My good friend, Creta Chandler, who is now the COO of Metro Sports Med came to town from New York with their new clinical director, Hugo Van Dijk (not a misspelling, Hugo is a Vowel Deficient Dutchman, don't be insensitive) for some training and to work on some implementation issues. We had a couple of very productive and enjoyable days.

Bonus: I took Hugo and Creta out to dinner at Oba on Thursday and Pam was feeling well enough to join us.  The one block walk from our condo to Oba and back was plenty, but she was able to do it. She pooped out about 8:30, and we called it a night, but it was great that she felt well enough to enjoy herself for a little while.

Little Consolation

I Make Babies Cry

I think my voice is too loud or I make too many sudden movements or too many funny faces or, evidently, look even weirder to babies than something that looks like a Giant Booger.

Here is proof:  Little Austin will snuggle up to Barley, the mascot of the Mighty Hillsboro Hops, but I can make him cry by just looking at him.

MHH, MEA, MSM*

Speaking of MHH, Pam and I went to the game in Hillsboro on Sunday, courtesy of Jason and Alyssa.  We really enjoyed it, but it wore Pam out a bit.  It doesn't take much.  As luck would have it, the MHH were in their final home stand with the Mighty Everett Aquasox, the Mariner's Single A team, so it was a double bonus.  Actually a triple bonus:  Justin Seager is currently playing for the MEA and he is the younger brother of Kyle Seager, who plays 3rd for the Mighty Seattle Mariners and is just tearing it up in the big leagues.

Black Stallion
On the Hitching Post
Ready for Action

On Tuesday, I was bored and realized it was my last chance to watch the MHH play the MEA in Hillsboro this year. Pam was still pretty tired, and didn't want to go to the game, so I had an adventure and got on the Max Train with my trusty bike, aka The Black Stallion, so I could ride it from the train station to the Hop Stadium. (Hops Stadium is cleverly located way out in the toolies of Hillsboro, but at least they put it in an inconvenient location 2 miles away from the train station.)  It was kind of an adventure.

The ride out to Hillsboro on the Max was sort of miserable. The train was crowded, and I had to stand with my bike because the bike hooks were being used and I was competing for some space with too many people trying to get home from work during rush hour.

The ride on the Black Stallion from the Max Station to the stadium was really enjoyable, and I got a nice seat behind home plate.  I got there early enough to catch the end of batting practice and by the time the game started, I was settled into my seat behind home plate, scoring the game, having a beer, eating peanuts and enjoying myself.  The lady sitting behind me asked me if I was a scout. Of course, being the quick wit that I am, I said, "Yes I am a scout for the Yankees, but I would appreciate it if you would kind of keep that on the down low." **

The MEA thrashed the MHH (the MHH don't actually look very M, they need pitching).  The bike ride back from the stadium to the Max was even more enjoyable, and I got my very own bike hook for the Stallion on the way back home.  I had a great ride in the cool evening air from the Goose Hollow Max Station, through Northwest Portland, and back home. When I got back to the condo, I was a little wired and couldn't sleep, but it was fun.

*Startling coincidence: MSM is the acronym for Metro Sports Med AND the Mighty Seattle Mariners... Spooky!

**That is what we call Creative License in blogville, sometimes known as an exaggeration, more commonly known as a blatant lie, designed to make the story more entertaining.  I didn't say I was a scout.. I just said No and laughed.  I wish I would have told her I was a scout, but I wasn't quick enough. Oh well.

Phobias and Crystal

Forgetting Things Phobia

I have a problem with forgetting things.  I always have, ask anyone. I am guessing that my forgetting things problem is not getting better as I get older.

It isn't really a mystery, I know why it happens:  Instead of thinking about the task at hand, like putting my keys in my pocket or my helmet on my head, I am thinking about everything else: Pam, Ben, an article I just read, how Felix deserves more run support, lyrics to an old song, reciting the Greek alphabet, or Medicare PQRS requirements (don't ask).

I would like to think it adds to my quirky charm, but I suspect it is more of an annoyance for everyone around me.

Pam recognizes my forgettng things handicap, so every morning she reminds me to make sure I have my glasses, keys, cell phone, lunch, laptop, bike helmet, etc.  I assure her that I have everything every morning, but I still manage to forget something at least once a week.  It should not be this hard.

A few times, I have gotten a couple of blocks away before I realized I was missing my bike helmet. Other days, I have gotten through a couple of hours squinting like Mr. Magoo at work before realizing my glasses are resting comfortably on my desk at home. Or, I get a voice mail reminder in my email inbox and then I remember my cell phone isn't in my pocket. Earlier this week, I forgot my keys, so when I got to our secure parking garage I was trapped.... couldn't get back to the condo to get my keys, couldn't get my bike unlocked.  Luckily, I didn't forget my cell phone that morning, so I called Pam's phone from the garage and she bailed me out. She never gets mad about it, which I appreciate more than she will ever know.

Paper Phobia

Because of this problem, I have also developed paper phobia. I seldom write notes on paper, because I will lose them.  Instead, I document them and organize them on a computer. My desk at work is never cluttered and I can access anything I need within a few seconds. Just don't ask me to remember it.

Name Phobia

Since I don't trust my memory, I get very anxious at any sort of get together because I am afraid I will forget someone's name.  The more anxious I get about remembering names, the worse it is.  I was at a physical therapy association meeting about 3 years ago, and I started to introduce a colleague of mine that I have known for over 20 years and I panicked and forgot her name in mid-introduction.  She thought it was funny, ("You forgot my name, didn't you??? You a-hole!!!") but I was mortified.

My Crutch

So, my computers are a needed crutch for my horrible memory.  When a customer calls me, I am looking up their account as we are exchanging greetings so I can remember what part of the country they are in and refer to notes about our prior conversations.  During customer meetings, I take notes and distribute them to everyone mostly because I will need the notes for myself.  When someone at work comes into my office to ask me a question, I often quickly access our company directory so I can call them by name.

 I am writing this on my Chromebook that I bought a couple of weeks ago.  It has become a necessity for me... particularly, since I have it set up so I can access my main computer or files from our shared drive at the office, or the Clinicient application from it. Sorry to get all nerdy on you, but it is HUGE for me. (In the future, if I am talking about my Chromebook, do me a favor and just smile and nod as if you find it fascinating... I won't know the difference.)

Pam and Crystal

On more important matters, it has been a rough week for Pam. The fatigue, shakiness, and upset stomach have worsened.  She isn't horribly sick, but feels far from well.  Last week, she was talking about riding her bike again, this week she can't get enough rest and is back to drinking a Boost once in a while instead of a real meal. I'm sure this is one of the ups and downs we will continue to experience, but it is pretty frustrating to see signs of getting back to some normalcy one week only to feel like crap again the next.  In many ways, it is was less frustrating, just way more scarey, when she was really sick.

Earlier this week, there was a free concert across the street. I didn't know who was playing, but it sounded really good and very familiar.

Of course, I forgot her name, but it turned out to be Crystal Bowersox, who was an American Idol finalist a few years ago. We love her music and voice. She is kind of an earthy folk/country reincarnation of Janis Joplin without the heroin problem and granny glasses.

I found Crystal Bowersox name on a sign outside the concert and excitedly called Pam. Unfortunately, she wasn't feeling well enough to join me. She was feeling too miserable to want to go across the street.

Concert Plans

So, another summer is slipping away. Last year before the stem cell transplant, I bought tickets to the Willamette Country Music Festival and got a motel reservation in Corvallis.  We figured the timing would be about right. We will see if Pam is up to it or not when the time comes.  Just feeling well enough to enjoy something like this will be a big deal.

Bonnie is Fired

Bonnie is Fired (except when we need her)

Now that Pam doesn't need someone with her all of the time, Bonnie is no longer on the payroll.  She will miss all of the fringe benefits, like sleeping on our couch and listening to my expert color commentary on the Mighty Mariners. We will give her a second chance, if we need her for some reason.

One more milestone toward normalcy:  Pam no longer has to test her blood sugar and take insulin.

And another:  We came to Manzanita for the weekend and Pam's Dad, Don and I took our obligatory butt-whipping playing a card game called Hand & Foot.  We haven't played since January. I think our record is 5 Wins and 73 losses.

A Great Day in Manzanita

And another:  I am walking to Starbucks once or twice a week early in the morning. I really enjoy catching up on some work and planning for my work day while sipping on coffee.  Small thing, but it is really nice to be able to get out of the condo once in a while.

Here is a picture of one of the Totem Poles in the neighborhood that I took on my way back from Starbucks early one morning.

Mighty Mariner Twitters

I am intrigued by a guy from England who is an avid Mariner's fan who is on twitter every game.  I finally had to ask him what's up:

Back Home

One Fitty

Today is 150 days since Pam's transplant. Things really could not be going much better.  She is eating small portions of real food, and, importantly is now more generous with giving up courtesy laughs at my amusing repetitive anecdotes.

 Great sign.

Manzanita

I mentioned in the last update that we went to Manzanita last weekend.  Here is a series of pictures of Pam standing in the kitchen wearing the same outfit.

I don't know how she does it, but she somehow pulls off the bald head. Since these pics were taken, she has grown about half an inch of dark hair.  

It is like sleeping with a different woman. Very exciting. AND Bonnie is no longer living with us during the week.  Pam is now able to take care of herself.  Bonnie is coming in on days she has to go to the clinic, but that is only once every 2 weeks now.

Slowly approaching normalcy.

Ribs

Here is a picture of Jason's Baby Backs going on the Green Mountain Grill last weekend. See Team Green for more on the grills. Awesome.

Mariners

Thoroughly enjoyed myself last night, but I amuse easily. I was tweeting, keeping Mariners score, drinking some beer, cooking dinner, and the Mighty Mariners had a great game.  See my twitter page @HendersonPDX for a total recount of the exciting exploits:

Me tweeting to Dave Sims, Mariner play by play announcer
about his mistake when he mentioned "Grangeville, Oregon"
Someone corrected him before me, and he apologized saying
he meant "Grangeville, Idaho over by White  Bird"

Me Announcing to the World
About my Exciting Friday Night Escapades

Telling the world that Pam was watching a Mariners replay

My nephew, Joe, giving me grief

My idea of fun
I probably need professional help

Neostar and Horsies

Just chillin'

North to Seattle

 After my quick trip to Mexico last week, I took another quick trip to Seattle on Saturday to visit my son Ben and Andrea and their family to celebrate Ben's 23rd birthday. Pam didn't feel quite up to making the trip.

We first went to the Rainforest Cafe for lunch.  Haile was initially scared by the animated elephants, so she did her best to ignore them and color.  But after a while, she was a little more comfortable and would look at the elephants.  She eventually announced "I like the baby".  Little Aubrey Skye sat wide-eyed and quiet.  Here are some more pics.

Afterward, we went to the Family Fun Center.  Haile must have ridden the Merry Go Round (or as Haile says, "Ride the horsies") a dozen times.  Each time the ride started, she would hold her hand out signaling stop and say "Done Time", meaning this is the last time. As the ride ended, she would say "One More Time!" holding one finger up, with a big grin, and we would go around again.  Naturally, her Mom and Dad didn't think riding the horsies all afternoon was nearly as entertaining and Haile and I.

Goofing with Grandpa's Hat

Neostar is History

Yesterday afternoon, I took Pam to OHSU, so she could finally get the Neostar Triple Lumen Catheter removed.  That thing was a real godsend for Pam since it was placed in February with all of the transfusions she has had to have since that time, but it is great to get it out of her chest.  I was joking with Pam that I could jerk that thing out any time.  I did watch them take it out, and it was a lot bigger procedure than I thought it was going to be.  There is a cuff on the catheter that is designed to help hold it in place with scar tissue.  To take the tube out, the scar tissue has to be separated from the cuff. It takes a lot of local anesthetic and patience to get the cuff loose.

Off To Manzanita

"Done Time", then
"One More Time!"

Last night after getting the catheter removed, we packed up the car and came to Manzanita for the Fourth.  Since the "100 days" is now history, Pam was finally able to travel outside of a 20 minute radius of OHSU.  This is the first time she has been out of town since last September, when our last visit to Manzanita was interruped by her getting and infection and ending up back in the hospital.

It is amazing how much better she has been over the past week or so.  She is much more like the old Pam. Her energy, enthusiasm, and great attitude are markedly better.  For the most part, she is eating a normal diet just small portions.  Her fatigue is better, but she still needs to take a nap every day and her tremor is still noticeable, but she is able to use her computer now without much difficulty.

Life is good.

Progress, Saps Anonymous and the Gas Cartel

100 Days Almost Over

Progress

Right now, there are 3 hours, 49 Minutes and 2 seconds left in Pam's 100 days.  Progress is slow, but inexorable (how is that for a word, huh??)  She is eating better, has more energy, less nausea, less shakiness, less fatigue.  (Not nearly the same thing as normal energy, no nausea, no shakiness, and no fatigue, but it is a start!)

She and Bonnie came back from Dr. Holtan's office today with a great report. All of her blood numbers look good, and we are going to start a very slow prednisone taper again. And, big news, she is going to get her "Neostar Triple Lumen Central Catheter" removed very soon.  That will be a big day. Every day that thing stays in it is a potential source of infection.

Mexico with Mr and Mrs Wire

The Camera Adds 50 lbs
..... at least

As for me, I have been goofing off in Mexico for a few days at Playa Del Carmen, where my niece, Rachael, married a very nice young man named Clay Wire. My nephew Joe officiated. I really wish Pam could have come. It was a great venue, and she would have loved it.

Anyway, during the reception I cried, as is my habit, because I am a sap. I am going to join Saps Anonymous along with my brother in law, Dean Brandstetter, who may have a bigger Sap issue than myself.


In spite of all of the unmanly sappiness, we ate great food, drank a lot of mediocre Mexican beer, and had a great time.

Wedding Venue
Made it was hard to go back to work

Gas and Airplanes

I don't mind flying, I just hate sharing the airplane with a bunch of other people. They are, largely, pigs.  On the way down to Mexico, I wrote the following public plea:

"As I am writing this, we are beginning a slow descent into Houston International Airport, and, almost on cue, someone farted. I just discussed this phenomenon with one of my work colleagues yesterday. Somebody, or somebodies, like an organized club of some sort; follows me around to fart on every flight that I book.

Mole was Muy delicioso!

I have been on the look out for the wily flight farter(s), but have not found him/her/them.  The guilty parties remain motionless and look stone-faced and bored, just like everyone else.  Not so much as a giggle, a smug look, or a wry smile.

If you are the Surreptitious Airplane Farter or a member of the Airplane Farting Cabal, and by some divine miracle, you stumbled upon this article, please stop. It isn’t funny. Find something else to amuse yourself or selves.

That is all."

Pass it on...

Lots of shrimp, lime, guacamole

Dorks and Eyelids

More Good than Bad

Fairly uneventful week.  Pam is having more good days than bad days now.  She is eating more "real" food, but still has a problem with fatigue.   The magical 100 days is almost up.  Hopefully Bonnie will be able to sleep in her own bed soon.

Since she is back on a low dose of prednisone, the central catheter will have to stay in for a while longer.  She also had another culture done to see if she still has the flu virus or not.

Channel Surfing with Your Eyes Closed

Also, big news, earlier this week, she was able to go to the grocery store with Bonnie.  Doesn't sound like a big deal, but there are other days, she will fall asleep in the middle of changing the channel on the TV.

"And this is how the cool guys
wear their hats"

The Hops
Here is a picture of Jason and Austin at the new stadium for the Mighty Hillsboro Hops (MHH).  I am still bitter about the Beavers getting kicked out of town by an un-American game, but glad that there is at least some baseball nearby.  Hopefully, Pam will feel up to going to a game soon.

The MHH lost their first game ever to the hated Salem-Keizer Volcanoes.  Doug Drabek is the MHH pitching coach, believe it or not.

Bridgeport has a special new beer to commemorate the occasion, and they are having a Longball Ale Release Party today.

My Project

I know the picture here is a little disturbing to most of you mature adults.  Don't be alarmed. I am going to work with Jason on how to wear a baseball hat before it rubs off on innocent little Austin and he makes them both look like dorks.

Some things you have to take a stand on.

Lazy and Weird

Lazy Saturday Morning

Feeling Lazy

Just got my morning cup o' go juice at the local Starbucks. As I was walking back, decided to take a picture of the streetcar tracks.  I don't know why.

Twenty days left in the magical 100 days. 115 days since the transplant. Earlier this week, I took Pam back up to the Rat Maze because she was not doing at all well. This fatigue, nausea, vomiting were getting out of hand.  After ruling out any serious setbacks, they put her back on a low dose of prednisone.  It was like magic.  By the next day, she was feeling OK and every meal was no longer an adventure.  Plan is to taper this relatively low dose of prednisone very slowly. Minor bump in the road, but it does mean that she will be on insulin longer, and will probably need to keep her central catheter in for a while.

Cancun

In a couple of weeks, I am going to Cancun for a few days to attend my niece, Rachael's wedding. I have only met her fiance, Clay, once, but he seems like a great kid. (Kid... he is an attorney, he may be over 30 for all I know. I have no idea. Crap I'm old.) Anyway, Pam and I are happy for both of them.

It will be good seeing my parents, sisters and their families. I am sure we will have a good time, but it is hard for me to look forward to it when I have to leave Pam here.

She is going to stay with her parents during that time, and I'm sure her Dad will enjoy doting on her for a while.  I think Pam is looking forward to getting out of here for a few days.

Weird and Getting Weirder

One of my favorite blogger - philosophers is a guy named Seth Godin. I highly recommend his blog to anyone. He just wrote another post explaining that we are all weird, and getting weirder. Seth's Blog. Turns out "Zylin" is becoming one of the top 1000 most common names for babies these days.

One of my many weirdnesses is skimming through the obits almost every day.  I have them delivered to my email from the Oregonian. It is kind of funny, because the email comes in titled Your Daily Obituaries.  Now that is weird.

I don't know why, but reading about the extraordinary lives that have been led by ordinary people like you and me is inspiring.

Very weirdly yours.... 

Chicken, Boost, and Biscuits

Chicken and Biscuits

Shaking it Up

Pam has had a very tough week and is very discouraged.  She has had usual symptoms, only worse: no appetite, fatigue, shakiness, nausea, vomiting. This whole thing is a marathon, and we are working our way up a long hill right now.

Since we have had a bit of a set back, Dr. Holtan has decided to hold off on taking out the central catheter for now, and she increased the dosage of some of the medications she was beginning to taper.

Pam's appetite has been so bad, she is primarily drinking Boost Shakes. We change it up to add variety by adding peanut butter, bananas, soy milk, or all bran.  Sometimes we go plain crazy and use Vanilla Boost instead of Chocolate.  It gets wild.

The Other White and Dark Meat

What little meat she can eat is pretty much limited to chicken, and I have already worked my way through my entire chicken repertoire:  grilled chicken thighs.  So, last week I decided to try cooking a whole chicken in a crock pot. I went all out and bought a free range chicken to see what all of the fuss is about. It was kind of a pain in the butt, frankly, it would have been better and easier to just bake it, but it turned out OK. I couldn't tell the difference between the free range chicken and the little tiny chicken coop chicken. They both taste like chicken.

So, the next night, I made chicken gravy which was actually really good, and we had (rather, I had) chicken over biscuits with chicken gravy. Pam drank a Boost and Banana.  Luckily, Nate came up for a visit and he was able to eat the rest of it.

Stay tuned for more chicken adventures.

Awesome and Unawesome

Five Star Day

Party Down!

Yesterday marked 100 Days since Pam's transplant, so we had a Wild and Crazy Celebration last night! WOOOO HOOOOOO!!! It is lucky we weren't all thrown in jail!  CALIENTE!!!

OK, not true, but we did have a little pizza party and a nice visit at Don and Bonnie's.  It was the first time Pam has really been out of our condo for any sort of social occasion since December.

Pam really enjoyed being able to visit without being in a hospital or wearing a mask.  She was able to eat part of a slice of pizza, but after a couple of hours, I could tell she was tired and we called it a night.  She promptly fell asleep on the way back home.

Gary and Jan Lusk
Picture is out of focus.
They were not drunk.
Don't start rumors.

This Week

I am going to try to catch up on a pile of work today, then go to Safeway. After that, it will probably take me all of Sunday and Memorial Day to simmer down from all of the excitement.

Awesome

Pam is supposed to get approval for some sort of infusion soon and may get her "Neostar Triple Lumen Catheter" removed.  That would be awesome.

Pam and Nephew Ben

She may get to come off of insulin sometime soon as well.  That would be equally awesome, if not awesomer.

Unawesome

My Mariners are playing extraordinarily unawesome baseball right now.  In fact, they couldn't be playing more unawesomer. It was capped by the MOST UNAWESOMEST UMPIRE CALL EVER.  Not only did the first baseman NOT catch the ball, he was pulled off of the base anyway.  HOLY SPUMONI, BATMAN!

Not awesome, Dude.

Danielle and the Cuties

Steel Cage Death Match

Pam only had one clinic appointment this past week, and (except for Pam STILL testing positive for the flu), Dr. Holtan had nothing but good news:

The Transplant has Fully Engrafted 

Meaning one of the two grafts has won the Steel Cage Death Match of the Immune Systems and has taken control of the situation.  Granted, it is still a baby immune system, and the last thing we need is an infection or something, but it is a functioning baby immune system.

Some of the restrictions are being lifted. Pam still needs to avoid crowds, but can go out in public without a mask.  We can even go to a restaurant now, but if we do, she needs to avoid uncooked menu items and salads.

She will probably only go to the clinic once a week for a while. If all continues to go well, she will start going every two weeks.

Her prednisone tapering is going fine.  She is fatigued and has some withdrawl symptoms, as we expected, but we are right on track.

With luck, she should be able to get her central catheter out one of these days, which would be great, because it is always a potential source of infection.

She still has a long way to go before she can have anything approaching normalcy, but we are getting there.

Chick'n Thighs and 'Roids

50/50 Day

50 50 Day

This past Thursday was 50/50 Day:  50 days since discharge from the hospital and 50 days left of isolation.  As I said earlier, there is nothing magic about 100 days... it is just a benchmark that is used to set expectations.  During the 100 days you are expected to be on a low bacteria diet, be particularly careful with washing your hands,  stay away from crowds of people and stay within 20 miles of the rat maze.  It is not like this whole thing is over in 100 days and Pam can go back to doing anything she wants to do. It is just a useful benchmark.

Long Week

Pam and Bonnie had a long week. I really feel bad for both of them. Pam had a consultation with an Allergist on Tuesday and Thursday to make sure that she does not have an allergy to sulfa medications.  It turns out she does not, which is good news because Dr. Holtan wants her on a sulfa med that is very helpful in warding off pneumonia.   She also had a repeat bone marrow biopsy, so she has a sore bum. And, they have taken another nasal swab culture to see if she FINALLY tests negative for the flu virus.  Once she tests negative, she no longer has to be isolated from other patients at the infusion center.  Being isolated like this is very tough, so we are really hoping the culture finally comes back negative.  The flu has made a very long haul even longer.

Off the Roids

Prednisone Taper Schedule

They are starting to taper Pam's prednisone.  I know that any steroid is tapered gradually, but Pam has been given a complicated tapering schedule that is pictured here.  I have no idea why they taper the dosage this way, but I am confident that there is a good reason.

I am working from home on Fridays now, so Bonnie can get back home on Thursday evening. 

Chicken Thighs

As for me, I am working on perfecting my secret recipe for Grilled Chicken Thighs. It is a secret because I don't really have a recipe. But, just because I appreciate you reading this pap week after week, here it is:

• Get some chicken thighs at the store.  Do not pay over $1.35/lb. Anything over that is robbery.
• Skin them and take all of the gross fat of of the sides.
• Mix together the secret sauce:
• Some Soy Sauce
• Lots of freshly minced garlic
  
• Some Sriracha Chili Sauce (which I call rooster sauce, and Jason calls "cock sauce" because he is gross)
• Plenty of Mrs. Dash Garlic Seasoning
• In a separate bowl, mix together some creamy peanut butter and some olive oil
• Combine the the two bowls of sauce stuff.
• Taste it so see if it is spicey enough.  If it is not, add some more rooster sauce
• Taste it to see if it is peanut buttery enough. If is is not, add some more peanut butter (duh)
• Put the chicken thighs in a plastic bag and cover them with the sauce. Leave in the fridge overnight.
• Massage them as if you love them once in a while.
• Put on a hot grill to sear, then turn the grill down low.
• Have a beer, maybe two. Depends on the beer.
• Cook em and turn them until they are done. I don't know how long. Use a meat thermometer.
  
• Serve over white rice (not brown rice, that is for Hippies) with some Japanese Seaweed Rice Seasoning, called Furikake.
• You can thank me later

Accepting the Unknowns

Operator Error

Oops... I miscounted.  The 100 days of isolation ends on June 28th, same day as my son Ben's birthday, so it should be easy to remember.  Recalculating everything, using my Countdown widget, there are 54 days, 16 hours, 26 minutes and 46 seconds left. At least there were a few minutes ago. Almost to the halfway point.

 

Unfortunately, there is nothing magic about the 100 days, it is just considered the minimum amount of time that one needs to take unusual precautions to avoid infections and that Pam needs someone with her 24/7. 

 

Stubborn Love

I am going to make a bold statement that will come as a surprise to exactly no one: Pam's Mom, Bonnie Eidem, is a stubborn person and she insists on doing too much. I have talked to her several times about taking it easy.  I have told her that I am perfectly capable of doing laundry, cleaning and cooking when I have time on the weekends and I told her that I am concerned about screwing up a good thing. The last thing we need now is for Bonnie to get sick herself, we are depending on her.  She politely listens to me, and just as politely tells me that my pleas for her to do less are futile.  I think she said "Just give it up, Jerry" or something like that..

 

The Unknown Unknowns

I think the toughest part of this for Bonnie is Accepting the Unknowns.  It really troubles her when no one can explain exactly why, at various times, Pam is nauseated, shakey, fatigued, or unable to eat. In her mind, there should be a definitive answer.  I keep trying to explain that there are simply too many variables:

• Pam is on a lot of medications with a lot of different side effects
• The medications and the dosages of the medications change all of the time. For example, the Prednisone dosage is being tapered, so some increase in fatigue is not surprising
• Her blood counts are still far from normal. She still gets anemic.
• She has drug induced diabetes
• Her immune system is still going through a lot of changes.  Two different umbilical cord stem cell grafts are still fighting it out for supremacy.  There is an immune system war going on.
• There is probably still some graft vs. host disease going on in her gut, and some of that is to be expected.
• Other Unknown Unknowns that I don't understand
• Other Unknown Unknowns that super smart, very highly educated, board certified, world class cancer academics and experts like Dr. Holtan don't understand

Bonnie is a smart cookie, and she understands about all of the unknowns, but that doesn't really help.  After we have a talk about all of this, and I go through my standard diatribe that we just have to accept that these symptoms are part of the process, and that we may never know the exact reason for some of the symptoms, and that some of the symptoms may have multiple causes, and that we need to trust the care she is receiving, she will pause and say something like "But I still don't understand why she is so shaky..."  My pleas to Accept the Unknowns are not working.  Bonnie will continue to ask questions for which there are no definitive answers. And that's OK. She is entitled. And, we are still grateful.

Shakey OCD

Whole Lotta Shakin'

Daily Pill Schedule

Pam has had more bouts of vomiting this week, at times it is making it difficult for her to eat and to keep her pills down.  So, we are supplementing her diet with Boost Plus and she is taking her pills one or two at a time and letting her stomach settle in between.  Taking little breaks between taking a handful of pills 8 times a day takes some time. Add in checking her blood sugar and temp, insulin injections, eating or trying to eat, this is a full time job.

The combination of all of the medication makes her very shaky.  One of her medications is liquid and taken with a teaspoon, but she is so shaky that Bonnie or I have to give it to her, or she will spill it.

No OCD for Me

Who Says I am Anal?

On Saturday mornings I usually spend a couple of hours messing around by writing in this blog, putting off any useful activity, and letting Pam sleep a bit.


Today, I added some countdowns to my Google homepage, so I know that there are approximately 65 days left in the 100 days since hospitalization without consulting a calendar. Very useful.

But that isn't quite compulsive enough for me, so I added a second gadget that counts down to the second. Much better to know that there are 64 days, 16 hours, 12 Minutes, 49 seconds left in the 100 days. 65 days seems very inexact by comparison.

It is also very useful to always know the current weather conditions in San Diego.  For some reason.  I don't really know why.  Maybe I have a problem.

Austin Sighting

Out for a Stroll
It was a nice day, but Pam has to bundle up
Anything under 75 degrees is cold to her

Earlier this week, the stars aligned and Austin got over his cold, so Alyssa was able to bring him over and spell Bonnie for a day. Naturally, Pam was in heaven. She had ordered a book and the See and Say Toy... "The Cow Says Moooooo". I was told it didn't make him cry. Austin was able to scoot around our courtyard in his little walker.

Highlight of the week.



Makita and Austin