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.