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



Rat Maze Virtues

Rat Maze Redux

Pam evidently decided she missed the ol' Rat Maze.  After spending most of the night in the ER on Thursday night and Friday morning, she is back in the hospital.

Earlier in the day on Thursday, she had an uneventful follow up appointment with Dr. Holtan.  Overall, Dr. Holtan couldn't have been more pleased with Pam's progress, but she was still concerned about Pam's inability to shake her chest congestion and she STILL tests positive for Influenza A. 

To explain, a person with a fully functioning, mature immune system would never test positive for the virus this long. It has been about 75 days since she first tested positive.  Dr. Holtan was joking about seeing if she qualified for the "Consecutive Days Testing Positive for Influenza A" in the Guiness Book of World Records. She suspects that the virus isn't really still live, but the test is positive because there are still remnants of the the dead virus in her system. 

More troubling has been the bronchitis and shortness of breath. The degree of shortness of breath she is experiencing is only partially explained by anemia, which leads us to how we ended up spending some more "quality time" at the RM.

ER Adventure

Thursday evening around 9:30, Pam's shortness of breath was getting critical. She couldn't even walk from the kitchen to living room in our spacious 800 sq foot condo without resting. It was getting obvious, even to me, that she needed to go to the hospital.  As part of this whole transplant program, you are instructed in situations like this to call the hospital and have the person that is on call with the Bone Marrow Transplant Team paged. Just to make sure that you have the numbers handy, they give you a list of contact numbers, a 3 ring binder full of instructions which also includes all of the phone numbers you may need, and, of all things, a refrigerator magnet with the phone number and the instructions for contacting the BMT team. It seemed like total overkill to me at the time.  So, as Pam was gasping for breath, cool headed customer that I am, I forgot about all of the above, and had to ask her where I could find that info.  She gasped "refrigerator".  I said, "oh, yea... I knew that", called the BMT people, they called the ER to let them know we were coming, and we were off.


I think we have been to ERs four times now since this adventure started, I have actually lost count. This ER visit was, by far, the worst. The nurse was quite nice, but the attending ER resident was without a clue, and I had to remind 5 out of the 6 people traipsing into the room, including the clueless ER resident, the x ray technician, the registration guy, and one of the nurses that they were supposed to wear a mask and gloves.  I am not even sure they all cleaned their hands.  In between "traipses", we sat in the little room for interminable periods of time. Pam couldn't get comfortable on the gurney. She was miserable.

There was a poor mentally disturbed patient in the room next door, and someone who was in handcuffs and escorted by a Portland Police Officer screaming about his injury across the hall, but that was really the only distraction during our stay.

Patience is a Virtue

I have been working on all of the virtues, like Honesty, Humility, Tolerance, Avoiding Bad Music (like Jazz that doesn't have a melody or any Rap) and some other ones that I
forget. During most of the ER visit, I was playing hearts on my cell phone and working on developing my Patience Virtue.  But I lost patience with the Patience Virtue, and gave up on it and focused instead on avoiding Rap, which was really easy and made me feel like I was accomplishing something.

In the end, we arrived at the ER at 10 PM and Pam didn't get into her new hospital room until after 3 in the morning. I didn't get back to our condo until about 3:45 AM, got to bed about 4, and was at the office by 8 because I had to make final preparations for a webinar my colleague Keddrick and I were presenting for Clinicient at noon.

View of the Willamette
Looking East from Pam's New Room
Kohler Wing (Old Room) on the Left

So, naturally, I was pretty bushed after the webinar.  I don't know if I even made any sense jabbering away fueled only by caffeine and adrenaline. I know that I was talking way too fast, but got through it OK. I will listen to the recording when I think I can handle it.

Today, Pam is obviously much better. She is on oxygen, but she is very relieved not to feel short of


View from Pam's New Room
Pedestrian Bridge
Between OHSU and the VA

breath all of the time.  She still has a rapid heart rate and her oxygen saturation is around 90%.  She needs to be at at least 92% oxygen saturation on room air. Her chest x rays are looking better, and she is being switched to oral anti-biotics.  If her lungs continue to clear up, she may get out of here as early as tomorrow.  Her nurse is bristling at the thought of her getting out that soon, she is going to make it clear to the team that she is better, but not that much better, so we shall see...

Knocking on wood didn't work.  I'm going to start knocking on formica or something.

Knock on Wood

58 days since the transplant, 76 more days of isolation, and Pam is continuing to do OK.  She is still very shaky and continues to develop a "Moon Face" from the steroids, but this is all expected.  Her weakness and fatigue are improving.  She can walk a couple of blocks now.  Her steroid dosage is beginning to get tapered, and her face will eventually go back to normal.  She still has trouble lying flat to sleep because of fluid in her trachea, but does not have a fever and she has had a chest xray and CT scan just to make sure she isn't developing pneumonia.

On another positive note, she had enough energy last night to do a little "back seat cooking" while I was making dinner:  "I wouldn't put those in the oven yet."  "You might want to turn those so they brown on both sides." "Did you put butter on the veggies", etc.  Good sign.

Bonnie is still sleeping on our couch, driving Pam to doctors appointments, fussing over both of us, and taking care of everything. Pam and I are both more grateful than you can imagine. We give her weekends off and let her sleep in her own bed as a reward. We don't know what we would do without her help.

As luck would have it, business at Clinicient is busier than ever, and my workload is over the top.  On top of our huge increase in customer growth, Medicare has pelted our customers with a bunch of new, complex regulations that we need to support.  We are trying to hire people to help with the flood of work that needs to be done, but it takes a few months for anyone to really get up to speed.  Age old problem for a growing business.  I am thankful we are doing so well.

Lying in bed last night, I said to Pam "wouldn't be great if this continued to go this smoothly?", then I started knocking on all of the wood within reach. It hasn't been fun, but minus a couple of minor bumps in the road, we haven't had any serious setbacks.  I keep thinking how lucky we are to have great medical care, great support from friends and family, and Pam's great attitude.

Homely Routine

Boring News

Today is Saturday, April 6th to you, but it is 61:51:17:-83 to us:

• 61 days since hospitalization for the transplant
• 51 days since transplant
• 17 days since discharge
• 83 days left of the "100 days" that Pam has to stay at home with 24/7 supervision

Other than the psychological stress of staying in relative isolation and the side effects of all of the medication, everything is going OK. Pam has been weak, fatigued, and shaky from anemia and the side effects of all of the medication. But she was finally able to get a transfusion yesterday, so she feels TONS more energy today. Prior to the transfusion, she had to rest 3 times while walking 100 yards, today, she rode her stationary bike for 15 min without difficulty.

We are making ourselves homely and getting settled into a new routine:  Pam's Mom, Bonnie, is taking care of all of the domestic-goddess-motherly-doting duties.  She comes over Sunday night and stays here through Friday afternoon and, in return for working her butt off, gets to sleep on our less than comfortable couch. She is a cooking and cleaning whirling dervish.  Pam and I are both concerned about screwing up a good thing; Bonnie is obviously very tired by the end of the week. I am going to try to work from home more to take some of the stress off of her as much as I am able, and we are going to get some other people to spell her... 83 more days is a long time.

Good Times!!

For my part, I keep a spreadsheet log of Pam's blood sugar, medications, temperature, diet, and exercise and print out a schedule for her every morning.  Now that she is no longer on IV medications, all we need to do is make sure she takes her oral meds, gets some food, monitors her blood sugar, takes insulin as needed, and exercises as she is able.

Exciting News

Mariners are only half a game out of first place behind Oakland and Texas in the AL West.  (I know... long way to go, they have only played six games, but I like saying they are only a half a game out.) And, my hero, Raul Ibanez, got his first hit of the season today.  He re-joined the good guys for the third time after playing for the Evil and Despised Yankees most recently.  I like to believe his heart wasn't really in it when he was associated with the Dark Side.

Depressing News 

Just noticed Raul was born in 1972.  Depressing only because he is considered an old man in major league baseball and I graduated from the Prestigious Grangeville High School Preparatory Academy of Logging in 1973.

Yikes.