Elephants and PET Scans

Bad News

Friday, Feb. 14th: It looks like the mystery of Pam's tonsil has been solved, and it is not good news. When I got back from work, Pam told me that she got a call from Dr. Meyers and the biopsy showed some abnormal "pre-cancerous" cells.  As I am writing this paragraph, I don't know any more than that. We have an appointment with Dr. Meyers on Feb. 20th to discuss the details and Pam is scheduled for a PET Scan on Monday, Feb 24th.  I am not publishing this blog until we know more. After we know more details, we will let her parents and immediate family know what is going on, then I will make some calls and publish this update.

On the beach in Manzanita

Packing Up, Ready to Go

View from our room at Salishan

Manzanita

Feb 15th -16th: We spent a couple of days in Manzanita with Jason, Alyssa, and little Austin.  I have gone from being someone who terrifies Austin to an object of continual fascination. Why? Because I can make good elephant noises. It is a rare talent, and Austin recognizes it.  It was great to spend some time with them.

 Unfortunately, although Pam's throat soreness has resolved, she has not able to keep food down consistently, so we reverted to a mostly liquid diet of chicken noodle soup and Boost.  Even though she was sick most of the time, she really enjoyed spending a little time with Austin.

Bonus: Jason and I managed to get in 9 holes of golf.

Double Bonus: I won.

Unheard of, Triple Bonus: By a lot.

Salishan

Feb 17 - 19: We spent some time together at Salishan Lodge, courtesy of a Christmas Gift from Kate Crosby. 

Pam mostly rested and slept, and I killed time by reading and writing. We were able to go out to dinner at the lodge and she was able to eat some lobster bisque, but she paid for it the next day.

The next evening, she was able to eat some chowder at Mo's, and that didn't seem to upset her stomach. I tried to buy her a massage at the spa at Salishan, but she didn't feel up to it. She slept most of the way home, and understandably, admitted to being anxious about seeing Dr. Meyers.

Viral Wars

Feb 20: Pam's appointment with Dr Meyers was earlier today. She confirmed what I suspected by reading lab reports, and doing some Google research. The biopsy from Pam's tonsil indicated that there are some cellular changes that are a pre-cursor to lymphoma.  The cellular changes are caused by a latent viral infection, which flared up because Pam is on immune suppressant medications as part of the regimen for her transplant.

She will undergo four infusions with a special medication "mono clonal antibodies" designed to stimulate her immune system to specifically target and take out the pre-cancerous cells. At the same time, the drugs that are suppressing her immune system will be tapered off, so that her new immune system can do it's job.  The first infusion is scheduled for Friday, Feb. 28th.

All told, Pam's spirits are OK.  We are both hoping that this is the last big hurdle before we can get to some normalcy.  It is always a relief to get a diagnosis and a treatment plan, even if it isn't always good news.

More adventures to come.

Vegas and the Snowpocalypse

She has felt better, but...
she has felt worse

Long, long week.

Pam has not been doing well. Her tonsil problem is improving slowly, very slowly, but she still has problems keeping food down because of the GVHD problem in her stomach and upper GI tract.

She is nauseated most of the time, and has been on a diet consisting mostly of chicken noodle soup and Boost for three weeks now. She has had to start taking anti-nausea medication again on top of everything else. It is a long slog.

Clinicient Crew in Vegas

I flew to Las Vegas on Monday for a physical therapy conference.  I didn't feel comfortable leaving Pam alone, so she stayed with her parents while I was away. The meeting was at the Venetian, and it was very nice.  The Venetian has palatial rooms and is a huge place.
I was on "booth monkey duty" all day, and after the exhibit hall closed I had commitments for drinks, dinner and meetings with customers and prospects.  It was a busy week. I gambled exactly $0, and got out of the Venetian exactly 0 times in the 4 days I was there.

I got home late Thursday evening, and PDX was in the middle of Snowpocalypse 2014. Luckily, I had no problem getting home from the airport.

We are hoping that her GVHD calms down soon.  In the meantime, I am trying to cook things that are pretty bland and easy to digest... mostly chicken, rice and vegetables.

Today, I occupied myself by doing a lot of reading and writing. I also did a slide deck that I hope will be used by physical therapists to educate their patients about their Medicare benefits for PT services (which suck).

February 13th marks the one year anniversary of Pam's stem cell transplant. I am hoping she feels better by then so we can celebrate.

Tonsillitis HolyCrapitis

Feeling relieved, but not happy.

Everyone makes mistakes.  I make more than my share.  In my view, trustworthy people own up to their mistakes immediately. People that are not trustworthy do not.

Pam got out of the hospital on Saturday, January 18th, after undergoing a barbaric experience with an ENT resident trying to aspirate an infection in her right tonsil. The procedure failed, miserably. So, since the abscess was not successfully drained, the antibiotics have not really touched it.  The little walled off pus pocket of bacteria in her right tonsil has been sitting there working overtime to infect Pam's whole system.  And, since she is on drugs that suppress her immune system, she couldn't fight the infection herself.  And, when she gets an infection, the graft vs. host disease in her gut flares up, so she has not been able to eat anything other than chicken noodle soup and Boost without throwing up. One more week of suffering that was largely avoidable.

Early yesterday (Monday) morning, I called the Bone Marrow Transplant clinic and explained that Pam was not getting better.  True to form, they did the right thing, and got Pam in to take a look.  Truthfully, they could not do much.  They looked at her tonsil, confirmed it was still infected, and called the ENT clinic to get Pam squeezed in a week ahead of her scheduled follow up. They were great.  They were empathetic, but practical, as usual.

We had the appointment with Dr. Peck, who is a fellow today. She has wisdom born of more experience.  She made it clear that she didn't agree with the procedure that was attempted by the ENT resident, and explained why with honesty, candor, and respect. Then she said "I need to aspirate that tonsil. If I can't do it, we will need to get you scheduled for a tonsillectomy."  Pam was a little freaked out, after the horrible experience in the hospital.  But, I reassured her that this needed to be done.

Dr. Peck did a great job.  It didn't look like a lot of fun, but compared to the hospital tonsil-hacking, it was a walk on fresh marshmallows strewn over thick pile carpeting.  Pam is tired. I am tired. But, I am confident that the tonsil will now drain and this latest infection will be conquered.

Part of the journey.

Free Ice Cream

Something Was Up

In hindsight, we should have known.  Pam has been feeling worse, very slowly, over the past few weeks. More fatigue, more problems eating, more nausea, more shakiness just .... more. She really has been feeling worse since around Christmas, but we attributed it to the tapering of her meds.  Last week, she started complaining of a sore throat, and we both thought she was coming down with a cold.  Finally, by this past Tuesday, the throat was much worse and her right tonsil was very swollen and she couldn't keep anything down, so she cancelled a dental appointment and went to her family doctor.  They took a throat swab and checked for Strep, but the culture was negative.  By that time, she was running a very slight fever, so they gave her a prescription for penicillin. (The immunosuppressant drugs she is taking mask some of the normal symptoms of an infection, such as a fever, so a slight fever is a big deal.) By the next day, her fever was worse and the tonsil was more swollen and she was in a lot of pain. She couldn't even keep her pills down. Since she had a regularly scheduled appointment at the Bone Marrow Transplant clinic on Wednesday, I took her, and after one look at the tonsil, they got her started on IV fluids and admitted her to the Rat Maze.

Ouch
At the RM, after getting a CT scan, the diagnosis of a para tonsillar abscess was confirmed and a very nice young ENT resident came to her room and attempted to drain the abscess.  It was brutal.  After donning a high tech headlight, and getting all of her gear laid out, the ENT had only had partial success at numbing the tonsil with lidocaine.  After that, she made several attempts to aspirate the fluid with a needle, and, finally, tried to get to it by making a small incision in the tonsil and spreading the incision apart.  Each step was more painful than the last, she never could get to the pus pocket, and, after an excruciating half hour or so, gave up. I am surprised I didn't break my teeth by gritting them so hard as I was watching all of this.

Luckily, us humans are blessed with horrible pain memory. (Interesting factoid: our memory of smells is incredible.  We can all remember smells from our childhood.)

Better Today
The antibiotics seem to be doing their magic.  It is easy to tell that Pam is feeling better.  She hasn't been herself for at least six weeks now, and now she is beginning to act like Pam. She is joking with the nurses and her CNA, and enjoying the free Hagen Daz ice cream.  Last night, we walked the hallways twice and she was able to eat a Cup of Noodles for dinner, and kept it down. Her first dinner since Tuesday.  I am guessing she will get out of the RM today.

In the big picture, this is a minor bump in the road. But, I would like to call a timeout on bumps for at least a while.

A Year Ending in a Hairy Situation

Wow, what a year! This past January, Pam was getting a brief respite from doctors and hospitals after 4 rounds of chemo, 3 (or was it 4?) trips to the ER and hospitalizations, God knows how many blood and platelet transfusions in 2012.  Then, in February, she was able to get the treatment regimen actually aimed at a cure: six total body radiation treatments, one more big blast of chemo, and, finally; her stem cell transplant, on Feb. 13th, 311 days ago. Unfortunately, her transplant was followed by six more weeks isolated in her room at OHSU with the flu.

But, fortunately, things could not have gone much better since.The rest of 2013 has been relatively uneventful by contrast.  Lots of doctor's appointments and lots of drugs, but only 2 ER visits and only one brief hospitalization since getting out of OHSU after the transplant. Improvement is slow and relatively steady. This is truly a marathon, not a sprint.

Next up: this February she will get another bone marrow biopsy and she will start getting all of her "baby shots": measles, mumps, rubella, etc.

Hairy Situation

Many of you know that her hair has grown in dark and curly.  She went to the hairdresser earlier this week to get it cut and styled. It looked terrible.  And, of course, she asked me how I liked it.  I stuttered and stammered; tried to avoid answering, and finally had to admit that I hated it.  It looked like an old lady hairdo suitable for a Prison Matron. She went back to have it re-done yesterday and it looks great.

Merry Christmas
The Snow is Fake

Doing Next to Nothing

As for me, I am taking a few days off, and am going to do my best to do very little. I am going to do some bike riding and catch up on reading. I just finished The Sisters Brothers on recommendation of Matt Harrison, just started How to Fail at Almost Everything and Still Win Big by Scott Adams who is the creator of Dilbert.

I took this picture on the way back from Starbucks and, somehow, my camera phone added an animated gif of snow falling. I have no idea how that happened.  Probably some minor Christmas miracle.

Mark, Roller Coasters and Killer Turkey

We Will Miss Mark

I am sure that many of you may have heard that Pam's brother, Mark, passed away last week.  Here is a link to his obituary: Mark's Obit.  Unfortunately, Pam was sick, and she couldn't attend the funeral yesterday, but really wanted me to go.  So I did.  She also wanted me to say a few words about her recent memories of Mark. So I did.  As you all know, I am a pretty emotional person and have grown to accept it. I knew that when I got up to speak at the funeral I would cry and be embarrassed. And I did. And I was. Oh well.  

As I explained to someone at the funeral, unlike most people, I don't have a fear of speaking in public, but I am working on conquering my fear of crying in public.

I never really understood Mark. I knew he was a talented, gentle, sensitive, quirky person, but I had a hard time relating to him on a personal level and I never really felt like we got to the level that we were friends. I think that was true with almost everyone who knew him. One of the few exceptions is Pam. I believe that she is one of the few people on this earth who truly knew Mark, and really understood him. I wish I had more time with him. I would have liked being his friend.

Roller Coaster

As luck would have it in the roller coaster that is Pam's health, she has had a rough couple of weeks that coincided with Mark's death.

Last week, just after we learned Mark died, she started complaining of more fatigue and nausea.  I initially attributed it to the stress of Mark's death.  But by last Friday, she finally got to the point she couldn't keep anything down, including her medications. We called the Bone Marrow Transplant team at OHSU, and they had us take her to her family doctor's office.  We spent some quality time at the Family Doc's office, and then we were ushered to one of our old haunts, the ER at Good Sam; where Pam's whole health care journey began in July of 2012.  After some tests, it was discovered she had a bladder infection and she was prescribed some antibiotics.  She was much better by the next day.  But, she started sliding again earlier this week, and we went back to OHSU yesterday after Mark's funeral. She was given a liter of fluid, and, again, much better today. She has another appointment at OHSU on Monday, so we will find out what is up.

Thanksgiving

My Sisters, Chelle and TC
My Mom, Rochelle

We were able to score two dinners on Thanksgiving: One at our good friend Mort and Tina's, and another with the Eidem Clan. It was great to see everyone.

My little sisters and my folks were all able to get together for Thanksgiving in Denver. I wish we could have joined them.  Here is a pic.

Hate to Brag .... 

The only problem with eating Thanksgiving somewhere else, is that you don't get turkey leftovers.  So, I decided to cook a turkey just for us. Hate to brag (not true, but that is something one is supposed to say before they brag), but my turkey was great.  Made a paste out of fresh basil, rosemary, garlic and olive oil and rubbed it under the skin of the breast.  Here is the recipe.

Killer Turkey

We have been having turkey quesadillas with some smoked pepper jack cheese courtesy of Jason.

Again... hate to brag.... but they are really good.

Discouragement

Pam is a little discouraged at the moment. She is tired of being tired and sick of feeling sick. We have to remind ourselves about how far she has come and how far she has to go. We remain thankful for her progress and the support of all of our friends and family.

The Ginger Ale Scale

Things Working Out

Since Pam was given the green light to drive again, I have had to travel more for work. In fact, I have been gone for most of the past two weeks. If Pam was still unable to drive and/or still needed someone with her 24/7, it would have been difficult. But now, she took me to the airport and picked me up for both trips and she used the time I was away to spend more time with Sandra, her sister in law and her parents. Sometimes things just work out.

I don't know how many times I have written "Pam is still shaky and fatigued" in this blog, but I can't think of another creative way to put it... she is still shaky and fatigues easily, and we don't expect that will get much better until she is able to get off of some of the medication in her Big Box O' Pills. But, good news, according to what I call the Ginger Ale Scale, she has not been having as much stomach upset and is able to eat pretty normal meals most of the time now.

The Ginger Ale Scale is a very scientific measurement of Pam's gastrointestinal upset which is caused by Graft vs. Host disease of the gut. When Pam's stomach is upset, one of the few things that seems to help consistently is Ginger Ale.  So, since she doesn't complain, I can tell how much her stomach is bothering her by taking note of how many cans of ginger ale she drinks.

NOLA and STL

Impromptu Parade
Creole Cajun Jazz Festival
Louis Armstrong Park
Nov 9, 2013

I was in New Orleans last week for a conference. If Pam were just a little bit better medically, she may have made the trip with me. We both love NOLA. I am tentatively planning a road trip next year to take in music venues in NOLA, Memphis, and Nashville.  

The conference was a huge success for Clinicient, and in the evening, I had a chance to have some NOLA fun.  The conference held a parade from the Hyatt Hotel to a party on the field of the Super Dome one evening. It was great fun. The next night, I went to the Louis Armstrong Park, just off of the French Quarter for a Creole Cajun Jazz Festival with some of my Clinicient colleagues. 

St. Louis, in contrast, was all work and no play. 

Back home yesterday, and had the luxury of my personal chauffeur picking me up at PDX. Glad to be home.

From the Field in the SuperDome
Nov 8, 2013

Last Appointment with Dr. Holtan

Pam has her last appointment with Dr. Holtan tomorrow. I feel bad, because I will not be able to make it, just because I am so pressed at work. I really wanted to express my appreciation to her personally.  Today, I think Pam and I will go to REI or the Pendleton Store and find her something warm as a going away present.

We both feel like Pam got "the luck of the draw" with both Dr. Weinstein and Dr. Holtan.

Great News and Bacon Dogs

Great News and Disappointing News

I haven't updated this Blog for about a month now. Pam went for a routine checkup about 2 weeks ago. Dr. Holtan had Great News about Pam's recovery, and some disappointing news:

Pam's Daily Meds

• Great News: Pam's recovery is going as well as anyone could dare dream.  Her numbers all look good. She still has a lot of side effects from all of the medication, but most of the meds will be slowly tapered over the next few months. Dr. Holtan continues to be VERY pleased and said there is an 85-90% chance that Pam's leukemia will never recur. It isn't 100%, but we'll take it! 
• Disappointing News:  Dr. Holtan is moving to Minnesota at the end of the year. We were really disappointed to hear that. As I have written previously, I think Dr. Holtan is brilliant, but she is also one of the sweetest and most pleasant people I have ever met. It is rare to see her without a big smile on her face. (Note to self: smile more, it is important) I am so grateful that Pam was able to have access to the great care she has received at Good Sam and Compass Oncology from Dr. Weinstein and at OHSU from Dr. Holtan and all of the other physicians, nurses and staff over the past 16 months. It has been inspirational.

 I have been reflecting about Pam's Journey since all of this started, and wrote a public blog piece to recap it. I hope to do a collection of pieces called Personal Stories About Healthcare.

 More Great News

Dr. Holtan gave Pam the OK to drive again, as long as she hasn't had to take medication to calm her tremor. Although we don't drive much, it is really nice for Pam to be able to drive out to see her family, aka the Aloha Mafia.

Even better than that, Pam was able to babysit little Austin this past week. She was on Cloud 9!  She came home pretty exhausted and sore, from chasing around a 1 year old, but very happy and chattered on "he is so cute", "boy, he is an active little boy", etc.  It was great to see and it is good medicine for Pam.

NW 11th in Portland
Looking South

Random Pictures

Beautiful Fall Day
From my office

Picture I took at Safeway
and posted on Twitter
I thought it was funny
(No one else did)

Adventures with the Cholo A's Fan

Mighty Mariners

My Seat
Surrounded by A's Fans

Now that Pam is having more good days than bad, we are able to get out of the house a bit more.  This past weekend, we went to Seattle to visit son Ben and Andrea.  I haven't had a chance to watch my beloved Mighty Mariners at Safeco this year, so I took the opportunity to go to the game Friday evening.  Pam wasn't up to sitting through the game, so I decided to splurge a bit and get a good seat. Scored a seat in the first row on the third base line.

We left PDX about 2 PM in horrible weather, checked into our room about 6 PM, and I immediately hopped back in the car to go to the stadium.  My seat happened to be in the middle of a bunch of rabid Oakland A's fans who had flown in for the game.  I decided to make the best of it, and started chatting with a guy from Oakland sitting next to me.  It turns out his name was Nary and he is the largest pony-tailed Cholo dude I have ever seen. He was bedecked in every conceivable article of Oakland A's gear... hat, jersey, badges, foam finger .. everything.  I believe he may have been wearing undies autographed by Bartolo Colon, but I didn't ask.

Since the Mighty Mariners proceeded to get their collective butts whipped by the A's right away, the

Twitter Exchange After I Tweeted
a Picture from my Seat

outcome of the game wasn't really in doubt by the 4th inning, I had plenty of time to get acquainted with Nary.  Between innings, I went up to get a beer, and he followed me to the concourse and insisted on buying. By the end of the game, we were old buddies and he wanted to exchange hats and have our picture taken together. That is one of the things I love about baseball.  It is a social game.

Kids are Exhausting

Son Ben and Andrea are continuing to do well, all considered.  He is working hard at his graveyard shift job doing maintenance at McDonald's. Andrea is working at a day care center, and their kids are both enrolled there.

Haile the Hambone

Normally, Haile is very shy, especially around me, so it was a huge surprise when we met Ben and Andrea:  Haile jumped out of the car, ran to me as fast as she could, gave me a big hug, and said "Hi Grampa!"  I couldn't believe it!  Then, when Ben came walking up, she said "Daddy, I talked to him!"  Very cute.

Ben and Andrea are struggling with a lot of challenges, but I couldn't be more proud of them and their kids are clearly their number one priority. Pam and I took them to dinner Saturday night.  It was a lot of fun, and also a little exhausting.  I tried to take some pictures, but no one would sit still. 

Andrea, Ben and Aubrey Skye

The Great Outdoorsman

Ben has taken up fishing, which I am really glad to see.  Here is a
picture of him on the Skykomish River.

Back to Our Hero

Pam is continuing to do as well as could be expected.  Progress is slow, but undeniable. There are far more good days than bad. Her hair is growing in thick, dark, and curly.  I joke that she must have gotten some Nigerian Stem Cells.

My Hero

Good signs:  She has more energy. For example, she is beginning to cook more. (I know that you were all worried about that because of my obvious signs of malnutrition.) She is also fussing about the laundry, and dawdling with makeup and such before we leave the condo to go anywhere.

I am really beginning to believe that the worst of this is behind her.

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.