Sunday, November 17, 2013

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.

Sunday, November 3, 2013

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)