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



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.

First Week Out of the Rat Maze

Who is Counting?

Pam and her New Friends

Since Pam's less than smooth and far less than fun discharge from the hospital last week, things have pretty great.  Today is Day 52:42:8.

• 52 Days since hospital admission
• 42 days since the transplant
• 8 days since discharge
• 92 days before Pam can be left alone

And, just in the last week:

• She is now able to eat adequately without blowing chunks, so her IV nutrition has been discontinued.
• Her last anti-fungal IV medication has also been discontinued.
• Her gut GVHD has responded well to steroids, so the dose is being decreased.
• She doesn't need red blood or platelet transfusions nearly as often.  She hasn't had blood or platelets since discharge, over a week ago!!!
• Our condo no longer looks like the 9th Ward in New Orleans after Hurricane Katrina.... looks more like a couple of weeks after Hugo.
• I am now able to track all of her medications on a one page spreadsheet.

Excuuuuuse Me!

Getting Ready
to Go Out on the Town

Pam still has to go to the clinic 2 or 3 times a week to get blood draws and get her fluids topped off as necessary.  Last Saturday, while driving her to the infusion clinic, I didn't see a guy who was waiting to cross at a cross walk.  It was my fault, "my bad" as they say. So, to teach me a lesson about my mistake, he bashed in the rear view mirror of our car.  After I realized what happened, I opened my window and apologized profusely, but I guess he was having a bad day.  In response to my repeated apologies, he made the same gesture I resist making to anyone wearing a Boise State T shirt.  I felt badly for the guy after I reflected on it, because there can only be one conclusion:  He has Terminal Butt-Itch complicated by Waste of Skin-itis.

We both shook our heads and laughed the rest of the way to OHSU.  What else can you do?

So, back to our hero: she still needs someone with her 24/7.  We are very thankful that Pam's Mom, Bonnie, is staying with us during the week.  I am able to get to the office and put on sporadic pretenses of productivity. 

Bonus: I am only getting on Bonnie's nerves a little.  There is still time.




Bastille Day at the Rat Maze

Wednesday  Day 44:34:0

Jason, Alyssa and Baby Austin came by yesterday evening and we moved the bedroom furniture back into the bedroom, then went to dinner at Sinju. This restaurant is in our building, and is very good, but for some reason I have never eaten there. (Again, if you are keeping score, one more great dinner, for free! This is a free food bonanza.) Baby Austin was with them, and was sitting up wide awake, playing with his feet, looking around, "conversing", and, occasionally, flashing a big toothless grin. It was great.


Getting Out

Pam is getting let out of Pam's Penthouse in the Rat Maze today.  44 days since hospitalization, 34 days since the transplant.  It isn't quite like Bastille Day, but it will be a huge relief to get out of here. It has been like being in very humane solitary confinement in a very nice cell while being sick the whole time.

As mentioned before, she will be on TPN (IV nutrition) and one IV medication for a while after she is discharged.  We went through some discharge training yesterday on connecting/connecting IVs and flushing the lines.  You would think we would both know how to do this by now, since we have both watched it hundreds of times since July, but it turns out we needed the instruction anyway.  I may need to change the dressing on her "Neostar Triple Lumen Catheter" (love saying that) on occasion, so I took a video to review the process.

When I got to he hospital this morning, Pam was sitting up and eating some cream of wheat.  She got a bit nauseated afterward, but didn't blow chunks, rested for a while, and she was feeling OK again. The rest of the day was mostly waiting.  While we were waiting, I made several trips to the car.

Pam will need to be on IV nutrition for a while after discharge.  We received some very poor instruction from the home health company on hooking up the pump, etc. and waited some more.

 

All Systems Stop 

About 2 in the afternoon, we found out that her discharge medications had not been pre-approved.  So, we waited some more.  At one point, we thought she was going to have to stay in the hospital one more night while we were waiting for the pre-auth.  It was finally approved around 6:00 and I was able to pick up the big box of medication.  We went through them again with the nurse and the pharmacist.  We finally got home around 8:00 PM.  We were both exhausted.

Pill Boxes

We got about 200 pages of information on pills, glucometer, insulin, IV meds, TPN, and everything else that needs to be done routinely. It is beyond ridiculous. Most of the information is useless, much of it is redundant, and the important information you need at any point in time is always hard to find.  (How do you turn this pump on again? How do you get the medications in the TPN bag? Saline flush, then heparin, or heparin, then saline?....it goes on.) 

The pharmacy gave us a big Mac Daddy pill box, which we found useless and confusing.  We ended up tossing it.  This is too complicated for that to work.

We became so overwhelmed with all of this, I condensed what we need to know into a spreadsheet.  I am printing out a spreadsheet for 7 AM, 8 AM, 9 AM, Noon, 3 PM, 6 PM, 7 PM and 9 PM with medications and a checklist for other tasks.  My goal is that someone could spell me, and with Pam's help along with the spreadsheet should be able to know what to do, or, at least what questions to ask.

Saturday  Day 47:37:3

It is now Saturday morning: 47 days since admission, 37 days since transplant, and 3 days since release. She will be under constant supervision and pretty much confined to our condo for 97 more days. Thanks to Grandma Bonnie's help, we have the condo pretty much organized and under control. Thanks to Brother Mark, we have new HEPA filters in place.

Last night, Pam ate about 1/2 of a chicken thigh, some green beans, and a little bit of fried potatoes.  She really enjoyed it.  She also had one of those little cups of sherbet  with the little wooden stick/spoon that we used to get when we were kids. 

She just now threw up and has taken an Atavan, but is sleeping comfortably in front of our gas fireplace.  It is nice to be home, even without the million dollar view.
 

Busting Out

Bounty

I made a great haul today: one of "Pam's Kids", Kate, visited and brought her some goofy socks and other goofy stuff, and brought me Maple Bars! My arteries are still quivering in ectasy. Our friends Steve and Debbie Wilkins also came by the hospital to visit, and took me to dinner at Salvador Mollys afterward. Mike and Sandra came by the hospital earlier, but I missed them. I had two offers for Corned Beef and Cabbage dinners yesterday from Mike and Sandra or from Jason and Alyssa.  I could have taken my pick.  But it wasn't a good day and I wasn't in the mood.

So, for those of you keeping track, since Saturday I have scored:

• 4 Maple Bars
• 1 Nice Dinner with Friends
• 2 Dinner Offers

I haven't even mentioned the sympathy breakfast I scored at Don and Bonnie's. This is like winning the Mega Million Cholesterol Jackpot.

Bustin' from the Rat Maze

Today marks 42 days since Pam was admitted to the Rat Maze, and it looks like she is getting out as early as Wednesday. Hard to believe.  She went from absolutely miserable yesterday to relatively comfortable today.  She ate a little cream of wheat this morning, and had a slice of white bread and chicken broth this afternoon. Without blowing chunks.  It was funny watching her savor the bread and broth... you could have sworn she was enjoying a meal at Le Buchon.  (Very good French restaurant owned by our neighbors... try it!)

Most importantly, she was able to down all of her oral medication. So, it appears that the doctors and nurses are right (again), and she is going to be ready to go home this week.  We are planning for discharge on Wednesday afternoon, meaning I need to get my butt in gear.  She will probably still need IV nutrition, but as along as she can take her medication orally we are good to go.  She is more excited than you can imagine.

I am going to talk with the doctors tomorrow morning about the discharge plan.  Number one on my plan is cleaning up my act in a hurry.  Our condo looks, uh, "lived in" at the moment.

Tough Applesauce

"Tough Day Today", he repeated....

Early this morning, Pam was feeling pretty good.  She felt like she got some rest last night, and getting enthusiastic about going home.  I took backroads to dodge the St. Patrick's Day Fun Run this morning and got to the hospital a little after 8 AM so I could catch the attending physician.  Here is the medical news in a nutshell:

• Bone marrow biopsy results from Wednesday still not back.
• Chest xray was clear.
• Liver ultrasound looked normal.
• Blood numbers look great.

She is off of all of her IV meds except for Tacrolimus and TPN (nutrition). Her TPN has been cut in half so that she can develop an appetite, but she is still not able to eat much at all, and is complaining of heartburn, nausea, and fatigue.  So far today, she has had 3 spoonfuls of apple sauce. She gets a little shaky after eating even that much and has to go to the bathroom.  Afterward she comes back pale and shaky and complains of being cold and nauseated. She will then lay down with her night mask on, and ask me for a wet washcloth for her forehead. She is also having a lot of problems taking her pills. Out of about 9 pills she is supposed to take today, she has taken 3 of them so far, and it is now after 3 in the afternoon.  I am working with her to take another spoon of apple sauce and another pill every half hour. The last go round, she ate half a teaspoon of applesauce and couldn't take a pill, so I am giving her another half hour. Nothing else I can do.

 

Saying the Right Things

All of this is wearing on her, as you would expect. To top it off, the steroids she is taking make her more edgy than she would be otherwise. I keep saying "the right things", but I am never sure they are "the right things":  "this is part of the deal", "one more bump in the road, you will probably have a lot of these", "we will get through this", "I wish there was someting else I could do", etc etc etc etc.  Even as I am trying to comfort her with words, I know that there is very little that anyone can do or say that is much help.  This just sucks.

Thanks

Pam's cousin Gary, Daughter Alyssa, Brother Mike, our good friends Steve and Debbie Wilkins have all called today offering whatever support they can:  St. Patrick's dinner, go out for a beer, etc.  MUCH appreciated.  Unfortunately, I really feel like I need to hang around Pam's bedside today and offer Applesauce Encouragement.  But THANK YOU ALL SO MUCH!!   Even if I can't take you up on your kind offers, it still means a lot to me.

Off to push some more applesauce....

Hospital Fatigue

Pam is finally eating a little, meaning that the steroids are doing their job, getting the GVHD inflammation in her gut to calm down.  They will begin tapering her steroids and her TPN (IV nutrition) and are talking about discharging her this coming week. It still seems to be up in the air as to whether she will need to continue the TPN after discharge.  We are getting conflicting information.

Monday will mark six weeks since she was hospitalized.  That, my friends, is a long time. She has held up remarkably well during all of this, but the psychological stress of being sick, fatigued, and isolated for so long is beginning to show. She is a little irritable and broke down crying while visiting with her parents last night, and again later in the evening when I was getting ready to leave for the night. She is anxious to get out of the hospital and anxious about returning home, concerned about being "a burden".  She is fearful of getting sick again and not having adequate care.  I have assurred her that Mom Bonnie and I will be watching her 24/7, but I understand her concern.

Her ANC number is skyrocketing now, meaning she has a growing immune system. The medical team has told her one of the two umbilical cord stem cell implants is coming in "as the clear winner", so her new blood manufacturing system is continuing to build.  She still needs red cell and platelet transfusions, and probably will need them for several weeks until her infant system can do all of the work on it's own.

Jello Shot

No Guts ....

Biopsy results from Pam's colon and esophagus indicate that she has GVHD of the gut.  So, basically, her intestine is swollen and irritated because the crazy little white blood cells don't know what they are doing and think her gut is one of their enemies.  They started treating the gut GVHD with steroids today, and it has already had a noticeable effect.

Zombie Brain Jello Shots

In contrast to Monday, which was pure hell, she was actually pretty chipper this evening.  We watched some high brow TV together and, drum roll, she ate a little cup of Jello.  It was like a Virgin Jello Shot.  Then she followed it with an orange popsicle.  She throughly enjoyed it. Didn't throw up or ask for Atavan. Small victory. (While I am on the subject of Jello Shots... here is an interesting article on Zombie Brain Jello Shots.  Looks yummy.)
Earlier in the day, she reports to me that she ate two spoonfuls of cream of wheat and about a quarter sliced bagel with non fat cream cheese.  (I didn't witness the earlier feast, taking her word on it.)

Field Trip

She had abnormally high bilirubin, so had an ultrasound of her liver earlier today.  It was a treat for her to get wheeled out of Pam's Penthouse to some other place in the hospital. The ultrasound looks normal, meaning that the high bilirubin is not being caused by GVHD of the liver, which is good news.

She also had a consult with the dietician, and it looks like she will probably still be on TPN (intravenous feeding) for nutrition after she is discharged. Even if she could eat enough to get adequate nutrition, it will be a while before her gut actually starts working properly to absorb and process the nutrients.  Assuming she can begin taking all of her medication orally, she could be discharged sometime this coming week.  Obviously, I don't know all of the details yet.

Remember our favorite lab result, the ANC?  It has gone from 1800 on Monday to  4100 today.  Well within the normal range.  Guess we will have to find another lab result to track.

Cruising

It was a great day.  Cruised my bike downhill on Terwilliger in high gear on my way home from the Rat Maze, then hit every stoplight on Sixth and Tenth without stopping. Even Burnside.  It was fantastic.

Mondays and Uvulas Always Get Me Down

Gotta Hate Monday

Monday was pure hell for Pam: Throwing up, retching, and having severe pain in her right hip. At one point, I had to help her walk from the bathroom to her bed. On the suffering scale, it was right up there with the period right after her diagnosis when she was in ICU last July.

Tuesday

Since the vomiting was getting worse on Sunday and Monday, she had a sigmoidoscopy and upper GI scope and biopsy early this morning. They want to rule out GVHD as the cause of the gut problems.  We should get the results tomorrow (Wednesday).

Uvula is Not a Dirty Word

During the upper GI scope, Pam's uvula (the little boxing bag thing at the back of your throat) was bruised.  It looks absolutely raw. I was going to take a picture, but didn't want to push my luck after taking the picture of her Chia Pet Tongue, so I inserted this clip art instead. Trust me, it looked gross. I'm sure it will heal quickly, now that she has some white cells on board, but she has a hell of a sore throat.

I HAD to get some work done, so I picked up Pam's Mom, Bonnie, early this morning to stay with Pam at the hospital.  I had our air conditioning/heating system serviced today as part of the prepration for Pam's discharge from the hospital while I was working from home, then rode my bike to the namby pamby tram and got back to the hospital at about 5:30 PM.

In spite of having the procedures today, she felt much better than the past two days. It looks like her nausea and vomiting worsened dramatically because her anti-nausea medication was switched.  Now that she is back on the old standby (Zofran), she was actually quite comfortable this evening and we were able to watch a movie together.  Her hip pain is also noticeably better. Huge relief.

Our favorite test result, the ANC is in the low normal range at 1800.  OUTSTANDING!!!  She is making her own red blood cells and platelets too, but they take longer to recover, so she will probably need several more blood and platelet transfusions over the next few weeks.

Popsicle

I forgot some big news.  Pam ate a popsicle while we were watching the movie without blowing chunks.  If they can keep the blowing chunks frequency (BCF) down to a tolerable level, she may begin eating again soon.  The popsicle was just a start. They brought her a special "GVHD" menu today:  Three phases.  Phase 1 is things like chicken broth, popsicles and hard candy.  Phase 2 includes scrambled egg whites and some tea.  Phase 3 includes some actual meat.  For some reason, reading the menu was entertaining.   Don't know why.

Downhill is Better

After the movie, I rode my bike down Terwilliger and back home. No rain, comfortable temperature. I really enjoy it.

A Biking Tip: Find your own namby pamby tram type set up and minimize the uphill stuff.

IV Pumps and Growing Pains

IV Pumps are Stupid

I have got a guaranteed million dollar idea for you. An idea that seems so simple and obvious that I would be amazed if someone else hasn't thought about this yet.

If you have ever been around someone who is hooked up to multiple IV pumps at the same time, here is how it works:


These Pumps
Are Stupid

• At irregular intervals, something will happen with one of the pumps that usually requires the nurse's attention: there is air in an IV line, an infusion is complete, the pump battery is dying, or the moons aren't aligned correctly. It could be a lot of things.
• The pump will emit an irritating and unremitting beep until someone fixes the problem.
• While the pump is beeping, the sick patient, who may be throwing up or trying to sleep at the time, is supposed to hit the call button to summon the nurse.
• It may be several minutes (always seems longer with the incessant beeping) and someone (who never identifies themselves) says "May I help you?" over the intercom. 
• The person on the other end of the intercom can hear the beeping in the background... so, why not say "This is Suzy, I hear the beep, is there anything else you need?"
• But the current convention is the patient says something inane like "I'm beeping"
• Intercom lady says something like: "OK I'll send someone in to take a look."
• Several more minutes later (again, seems longer than that with the frickin' beeping), a nurse comes in, switches out the IV, or gets rid of the bubbles, or whatever and the beeping stops.
• Many times right after the nurse leaves, another pump will start beeping and the whole process is repeated.

Don't get me wrong, Pam's care at OHSU has been great, the IV Beep System, which I believe is standard operating procedure at all hospitals, is truly stupid.

So, here is my multi-million dollar stunningly simple idea: Develop a telemetry system so that instead of a pump beeping, the nurse gets a message on their little pager, like "Tacrolimus infusion complete, Room 14". THE SAME MESSAGE THAT IS FLASHING IN LED LIGHTS ON THE PUMP... THIS ISN'T HARD.  Don't beep at the patient, BEEP AT THE PERSON THAT CAN DO SOMETHING ABOUT IT! Save the call button for times when the patient needs physical assistance with other stuff, like going to the bathroom or getting a new vomit bucket, things like that.  OK, diatribe on Stupid IV Beep System is over.

Holy cow, annoying! OK, now it is really over.

Discharge Plan

Booth Monkey

Yesterday, I went to a conference for Clinicient to serve as a "Booth Monkey" and I didn't catch Dr. Holtan on her rounds this morning.  But she told Pam it is going to be longer than she thought before Pam can be discharged. They can't consider it until she can eat and take her medication orally, and she hasn't made much progress in that area over the past several days.  Her blood counts continue to look very encouraging.  I think Pam is relieved as much as she is disappointed.

Dr. Holtan has ordered another sputum culture to see if Pam is still testing positive for the flu virus, since it looks like she will be here a while longer.  If the flu culture comes back negative, she can at least get out in the hallway, and we don't have to wear these yellow isolation gowns all of the time in her room.  Should know the results by Tuesday.

Last report we had on Pam's ANC number is 915, two days ago, so it is continuing to improve.  Her GVHD rash is almost completely gone.  The little bit of stubble on the top of her head is also almost gone. All of this is expected, and is a good sign that things are going as expected.  This brings me to a weird symptom that is another good sign:

Growing Pains

Pain Classification in Bone Marrow Transplants

As the stem cells embed and expand in the long bones and pelvis, it becomes painful and it is described as feeling very much like "growing pains" that most of us have experienced as kids.  Deep, achy, poorly localized, unremitting pain, primarily in the knees and hips.  Weird, huh?

For the wonks out there, here is a table of common causes of pain related to stem cell transplants that came from this article.  I have highlighted the probable cause in Pam's case.

So, I am guessing that Pam will not be getting out this week, and that she will be discharged closer to the six week mark since her hospitalization.

More to come...

The Perfect Crime

Roller Coaster Continues

On Wednesday evening, Pam was so nauseated that she asked me to work from the Rat Maze on Thursday so I could talk with Dr. Holtan when she made her rounds. So, I cancelled some meetings and got to her room at the RM at around 8 Thursday morning.  When I arrived, Pam was absolutely perky: talkative, joking, and she actually felt hungry and was thinking about eating. It was awesome.  I settled in and got some work done and had a phone conference with one of my customers from one of the relatively quiet RM hallways on my cell phone.  But feeling human was short-lived.  By 10, she started getting nauseated and vomiting.

Dr. Holtan came around 1:30, and she couldn't be more pleased. All the numbers indicate that Pam is ahead of schedule, and BIG NEWS:  she thinks Pam can be discharged "within 7 days".  All that is keeping her from being discharged is being able to take her medication orally and eating...  meaning I need to get my butt in gear.

Nauseated and Vomitey

It is now Friday, still no relief from the vomiting and nausea. The team here is jockeying with the anti-nausea medications, but haven't found anything that takes care of it without making Pam so lethargic that she can't stay awake.  Dr. Holtan said it will probably just resolve itself before they find anything to control it. I am guessing that it will resolve very soon. 

Pam is so tired of this, she starting crying the first time this evening while I was talking with her.  You all know that I am normally a ROCK, but I shed a few tears myself. I feel helpless.  I am guessing that all of this being "vomitey" will resolve soon.  It still amazes me how quickly everything changes with this disease and with chemotherapy.  VERY sick one day... feeling pretty OK the next. Big difference from what I am used to in my old physical therapy days, where improvements tend to be slow and not nearly so dramatic.

Superhero Blood Cells

Big, important news, Pam's Active or Absolute Neutrophil Count (ANC) count is now at 868 and is rising rapidly.  The ANC is a count of the white blood cells that are responsible for fighting infection. Anything below 500 is considered neutropenic and at risk for infection. Around 1500 is considered normal. 

The Perfect Crime

Pam now has two blood types.  Eventually, one of the blood types will win this war, and she will end up with only one.  Very weird.  Jason has talked about having Pam rob a bank, and leave some blood droplets behind as forensic evidence for the CSI investigators.  Billiant plan, but she will need to get better soon before we can pull of any sort of heist.

Another Beautiful Day
from Pam's Penthouse

Another day at the Rat Maze.

Pam's assessment: "I feel like CRaaaaaaaAP!"

One Month Mark

Good News

Dr. Holtan continues to be very pleased with Pam's progress:

• Mouth pain is definitely better.
• Rash is healing nicely.
• Still no fever.
• Lungs still OK.
• She is beginning to drink water and Gatorade.
• Most importantly, her white count is beginning to nudge upward.  It is a small change, but significant. Her count has been bumping around at .1 to .2 for several weeks, and as of today, it is at .5!!  I have added a graph here to show the improvement (I added the red line myself to show the latest test result from today.) Based on our experience with the last 3 rounds of chemo, the white count tends to improve rapidly after it finally starts going.  You can see that she still has a long way to go to get to the low part of the normal range.

 Released?  Yikes!!

Dr. Holtan even offered a guess that Pam could be released in 10 days or so.  (Guess I'll have to start picking up after myself.) It seems hard to believe right now, because she is still awfully sick. She can't eat, has persistent nausea and gets "dry heaves" a few times a day.


Of course, after dry heaving for a while she gets some IV Atavan, which calms her nausea and vomiting pretty quickly. But, by then, she is exhausted from heaving and sleepy from the Atavan, so it is lights out for a while.

One month since Pam was admitted to the hospital, and +20 since transplant. My unofficial "Bag Count" is still 8.