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.

Rodent Parts and the Easter Bunny Basket

Rash is the Real Deal

Day 18

Saturday morning I was able to speak with Dr. Holtan and she is very pleased:  the biopsy results from Pam's rash came back and it is definitely a GVHD rash.  The rash is already getting better, so Dr. Holtan does not believe it will need to be treated with systemic steroids, just topical cortisone cream.  She also told me that Pam is ahead of schedule:  they don't expect the GVHD rash until Day 14.  Pam's rash appeared on Day 12.

Her mouth pain MAY be a bit better, or it may be that her pain is being controlled better. No fever, clear lungs, all of her numbers are on target. She is still unable to eat anything at all, partially because of the mouth pain, partly because of nausea and vomiting.  The IV feeding sometimes causes blood sugar swings, so her blood sugar is being monitored on top of everything else, and she sometimes needs an insulin injection.  All of this is to be expected.  She just finished another unit of red cells.


Day 17


The Bag Count is my personal barometer of progress and it is still 8 Bags.

 After the great meeting with Dr. Holtan, Pam snoozed for a while on the couch in her room. She has been talking in her sleep quite a bit more than normal and hallucinating a bit under the effects of the medication.

Conversation Saturday morning while Pam was snoozing:

• "Where did those rodent parts come from?"
• "Pam, there are are no rodent parts."
• "Really?"
• "No"
• "Come over here and I will search you!"
• "huh?"



Pam and her New Friend
Pam is on the Right

Whirlwind

I am getting our condo ready to have the bedroom carpet replaced.  After the Rodent Part discussion, I went home to pack stuff from our dressers into boxes and move the boxes and other assorted treasures out of our bedroom and into the Dining/Living room at the condo. (I found out while emptying one of Pam's dresser drawers that one cannot own too many Holiday Themed Socks.)  Jason and Alyssa came by to help me move the larger furniture I couldn't move by myself. As an added bonus, they brought over a new beer to try and we went out to dinner. So all of the stuff from the bedroom is stacked about 8 feet high right now and I am sleeping on the couch until the carpet is done.

Quick Trip to Woodinville

This morning, I came into the Rat Maze for a quick visit, then headed up to Woodinville to visit my son Ben and Andrea, and my two grand kids.  I stopped by Target to pick up a little felt Easter Bunny Basket for Haile filled with some goodies.  As usual with Haile, it took a while for my charm to wear her down.  I am obviously very scary.  Ben and Andrea told me that when she sees pictures of Santa, she calls him "Grandpa", which doesn't make me feel good.  I may go buy some Grecian Formula...



Camera Shy

Warming Up



Ben and Aubrey Skye
Aubrey is the chunky one

Haile Loves Coloring
Aubrey Loves Staring



Back to the Rat Maze

I got back to the Rat Maze about 5:30 this afternoon and saw Nate and Alyssa as they were leaving.  They told me Pam tried to eat a little chicken noodle soup, but that didn't go too well. Right now, she is resting comfortably in her bed, holding her call button/TV remote and playing it like it is a clarinet.

So, except for the frickin' flu keeping Pam in her room, everything is going as well as we could expect.

More adventures to come.

Soy Milk and Coke

Soooprise!

I crept into Pam's room at OHSU today, assuming she would be asleep, but she was sitting up in her chair with a goofy smile, and she said "Hi" like she just had a few too many.  She seems to be much more comfortable today, but she is lethargic.

Dr. Holtan changed her pain pump so that she is getting a low background dose of Dilaudid, but she can still push the PCA button to give herself a bit of an extra dose as needed. Her facial expressions when she is sleeping look much better than a couple of days ago. Still a long way from a good day, but seems to have been a better day.

Gross Drinks

She actually drank a couple of thimblefuls of Coke mixed with Soy Milk today. You may be thinking "Why Coke mixed with soy milk?" and I will answer that I have no idea.  Pam has a unique ability to conjure up gross stuff to drink. Before she went into the hospital, she had me buy a bunch of this foul energy drink stuff and bring it to the hospital so she could enjoy it during her chemo, radiation, and other pursuits.  I think it is called Macho Vampire Energy Boost Blast or something like that and it is formulated with B Vitamins and wombat liver or something.  I can't even stand the smell of it. The nurses took it away from her. Proving my point that the stuff is vile.

Since Pam was pretty much snoozing and seemed relatively comfortable, I didn't spend much time at the Rat Maze after work because I needed to check up on Laundry Fairy's work.  It turns out she is still AWOL, so I am catching up on some laundry myself.

Alyssa and Bunny Ears

Last evening Alyssa came over for a visit, and Pam was pretty perky during that time.  It was great to see.  Alyssa brought her some bunny ears and they looked at pictures of Grand baby Austin.  Good times.

"What's up Doc?"

Chia Pet Tongue

Lucky 13

Chia Pet Tongue
(Pam cooperated because she is on drugs)

Today is day 13 since the transplant.  Pam called me early this morning because she was feeling terrible: blowing chunks, having the poopy-scoots, and her mouth and throat pain are much worse.  Her tongue looks like a Gross Chia Pet because of opportunistic fungus.  (This is an expected part of immunosuppression... not a big deal, just gross looking.)


A Rash Thought

But... we think we may have GREAT news... she is also getting a rash.

Let me explain: A distinctive rash is one of the expected symptoms of Graft vs. Host Disease, or GVHD, and GVHD is an expected side effect of an Allogeneic Stem Cell Transplant, like Pam's.


Day +13

It occurs because the immature stem cells are "doing their thing"... they are looking for a fight, and they recognize the patient as being a foreign invader so they attack everything in sight, including skin, which causes the rash.

Dr. Holtan has emphasized to us repeatedly that "there will always be GVHD, it is expected, and some GVHD is actually a good thing". So, she was pleased and excited when she saw Pam's rash this morning. Weird, huh? Some tests are being done on the rash to see whether or not it is a side effect of GVHD and not a drug allergy. We should get the results in 2 days. Keep your fingers crossed!

Bag Countdown

Lots of bags hanging on her IV stand now, in addition to her pain pump.  She will be getting nutrition through another bag this evening, as I expected.  She is also continuing to get blood or platelet transfusions every 2-3 days. 

The number of bags hanging here are a good indicator of how close she is to getting out of here and going home... as you can see, we have about 7 or 8 bags to go.

Obviously, she is taking a LOT O' DRUGS right now, among them Dilaudid for pain, Benadryl for itchiness, and Tacrolimus, which is an anti-fungal agent.  Her nurse, Amy explained to me that the combination of the Dilaudid, Benadryl, and Tacrolimus can cause auditory and visual hallucinations.  "So she could wake up thinking she was just talking to a vampire or something."  I told Amy that she does that normally without the help of any drugs.  She is a little disoriented already and has lost track of days and time.  When she wakes up she can't hazard a guess whether it is day or night, morning or afternoon right now.

How about a blanket?

I asked her about 30 minutes ago if she wanted a blanket.  She said "OK" about a minute ago. I said "OK what?". She said "OK, I'll take a blanket, please."  I said "You are on drugs. Here is a blanket."

Playing An Instrument

Texting

Pain Control 

This is like August all over again. Pam has had a lot of mouth pain and they have started her on "PCA"... patient controlled analgesia. Anytime she feels like it, she can push a button to give her a small dose of narcotic pain medication.  I wrote about it during her first round of chemo back in August: Pain Pump.  They tried her on Fentalyn with the PCA yesterday, but she broke out in a rash, so now she is on Dilaudid.

She is also using viscous lidocaine on her sore tongue, which helps a little.





Getting Ready
for a Haircut




The pain pump definitely helps her with the pain, but it also makes her even more goofy than normal. She is apt to fall asleep in mid-sentence or talk to you groggily with one eye open and the other closed. Once she fell asleep and started waving her arms around while holding one of her IVs in one hand and the cord to the PCA in the other.  I asked her what she was doing, and she said "playing an instrument".


Nutrition

The mouth pain is making it impossible for her to eat solid food. Even drinking water or the Boost drinks is very painful.  She was only able to choke down 2 Boosts today, and she should be drinking 5 of them to get adequate nutrition.  I am sure they will put her on IV nutrition soon.  (Called TPN, I wrote about that last August as well.)


Flu

The results from the flu culture came back today, and Pam still tests positive for the virus.  That was really disappointing, because it means she has to stay isolated in her room for fear of infecting some other immuno-compromised patient. It would be so great to be able to walk the hall.

Hair
Pam's Mom, Bonnie, shaved her head on Saturday. In the scheme of things this is very minor.


Day +10



Day +11









Day +12



Expectations and Reality

We Expected That

I have been a little scarce at work lately. I took two weeks off, and for the past week, I have been working at home in the mornings, going to the office in the afternoons, then skedaddling up to OHSU in late afternoon.



Transplant +8

While I was in the office today, several people asked me how Pam is doing. I tell them she is pretty sick and miserable, but I always try to reassure them that it is exactly what we expected.  Seems a little strange:  She is nauseated, blowing chunks occasionally, and not getting enough nutrition, but we expected that.  She has a lot of pain because of mouth sores, but we expected that. She has kept her great attitude through all of this, and I expected that. So far, the only unexpected thing has been the horrible timing for catching the flu.



Transplant +9

She is going to get tested to see if she is still "throwing" the flu virus tomorrow. The test results take 2 or 3 days. If she tests negative, she will be allowed out of her room and she can walk the hallways. That would be huge.

Boogie Fever

Since she can't walk in the halls, she put on some 80s dance music today and busted some moves.

Terwilliger

Observant readers may recall that one of my goals was riding my bike up the hill to OHSU.  In my mind, I was going to do that every day after work.  Hasn't happened yet.

Today, I could barely pedal against a headwind when I was on a flat road, so my bike and I took the namby pamby tram up the hill to OHSU.  After I got some pasta from the cafeteria, and Pam had about two teaspoons of yogurt for dinner, we watched the season finale of Gold Rush, my favorite show.  (Spoiler Alert:  Team Todd did not get 1,000 ounces of gold.)  I don't know if I mentioned this before, but I was on a flight with Todd and Jack Hoffman of Gold Rush fame from Las Vegas to Portland a couple of months ago. (They rode first class.)  After we landed in PDX, I surreptitiously followed Todd and his young daughter on our way to baggage claim and eaves dropped on them.  It was wrong, but I am not really ashamed of it.

Turns out Todd is pretty short, and  Jack really does talk that way.... "You are all millionaires, you just need to get it out of the ground!"

After GR, I rode my bike back down Terwilliger and through downtown Portland, then home.  It was a gas.  I am either going to ride my bike up that hill  before this whole thing is over, or I am going to lie about it.  You will never really know.

Contest Teaser
Pam has an idea for a contest. I will be announcing details soon.




One Week

Today is +7

Big day, calendar-wise. It has been a week since the transplant, but it wouldn't take much for someone to convince me that it has been a month, or a year, or a day. Seven days seems like a very long and/or short time. (Again, I know this makes no sense, just smile and nod as if you understand.)

I bought Pam an aerobics step, since she is confined to her room.  She was able to use it for six minutes this afternoon, which I thought was outstanding, considering her blood counts. 

She is using a little piece of sponge in her mouth to keep her tongue from rubbing against the inside of her teeth.  Still puking, fatigued, lethargic, etc, etc, etc, BUT no temperature and lungs remain clear.  She had a red cell transfusion yesterday.  Platelets are now VERY low, so she will get platelets tomorrow.

Cafeteria Ladies

Little piece of advice... when hanging around hospitals for ridiculous days on end, make nice with the little ladies who are cashiers at the hospital cafeteria. It is ridiculously easy and very entertaining. Here are some of my tested lines:

• "Are you still here?  Don't you get any time off?"
• "I swear  this is better food than El Gaucho, how do you do it?"
• "Do I get frequent flyer miles with this?"
• "Are these maple bars healthy?"

 Based on my scientific sample of two cashiers, the little Hispanic lady cashier at Good Sam and the little Asian lady cashier at OHSU, you will develop a warm relationship in about 2 weeks.  Here is how it works:

• After they have seen you every day for a week, curiosity sets in:  "Is everything going OK?" means "Wow, you have been coming in here for a long time, what the hell is going on?"  Play coy at this point, and just say "Everything is great, thanks!"
• After 2 weeks, they really can't stand it: "Is your wife in the hospital?" See, they can't really ask you why the hell you are eating in the cafeteria every day, but they are a little more curious now and are beginning to become a little sympathetic. They don't know if it is your wife or your kid, but they know that you are there because there is something serious going on.  It drives them crazy.  Respond with "My sweetie has been really sick, but it is getting better. We are so lucky." (They love the optimistic ending.)
• In 3 weeks, they will ask more questions trying to figure out why you are still there. You are golden at this point. They begin to think you are some sort of saint.  Start laying it on as thick as you can stomach it yourself:  "It has been pretty rough, my sweetheart has been in ICU for 5 days" or "My sweetie is here for a stem cell transplant" or "it was touch and go, but we made it!" You get the idea. 

Now, VERY IMPORTANT... do not say "my wife" even if you are married. You see, "my sweetheart" just adds to the intrigue, and paints you as being a sensitive, caring man.  And, as a bonus, the Cafeteria Lady doesn't know if you are married, or you are referring to your gay lover.

If you follow these steps exactly as I have outlined above, the Cafeteria Lady will absolutely beam as you approach the cash register.  It is fantastic.

Word of warning:  None of this will work if you are a jerk in any way.  Cafeteria Ladies can sniff out a jerk two steam tables away. I have seen it.

The Payoff

I am proud to say that following my tested techniques previously at Good Sam and yesterday at OHSU, I have gotten coffee from two different Cafeteria Ladies "on the house" . Twice.  Without asking. Two different hospitals and very unofficial. With a wink. Awesome. Huge. Fun. Victory.

Saving all of my humorous anecdotes for later... as soon as I think of some.

More of the Same, Only Worse

Expected Stuff

Day +6

Almost a week since the transplant and there is nothing really new to report. Pam's mouth soreness is worsening and she is taking oxycodone for the pain. She is having a hard time eating, partly because of lack of appetite, partly because of nausea. and partly because of the mouth pain. She is taking oxycodone for the pain. She blew chunks a couple of times yesterday.  I talked her into eating a Boost milkshake last evening, and she kept that down. She is keeping up on her water intake.  Her white count is nearly undetectable and she received another unit of platelets last night, and will need red cells soon. The combination of anemia and pain meds make her very lethargic, she will sometimes go to sleep in mid-sentence.  Her lungs are clear and she has not spiked a fever, which is very good. Other than the flu, this is all expected stuff. We are hoping that she gets taken off of isolation soon, it would be really nice for her to be able to walk around the hall.

I am going to work out of our condo in the mornings, primarily doing projects and software demoes, then I will go into the office in the afternoons, then up to the hospital.  I started back to work yesterday, and I was semi-productive.  Hoping I can get back in the swing of things soon.

Keith and Pam

Keith 

One of Pam's "kids", Keith, visited yesterday.  Great to see him. He just moved back to PDX after living in Seattle for a couple of years.

More excitement to come.

Blowing Chunks

Day +5

When I wasn't studying or going to choir practice during my illustrious collegiate career at the University of Idaho, I learned an expression called "blowing chunks". Pam is hanging in there, but early this morning, she blew chunks, so she has been on a low dose of Atavan for nausea.

She is beginning to develop a sore on the side of her tongue.  I bought her some dental wax which she uses to cover a rough spot on her tooth causing the sore.  She is taking a low dose of oxycodone for the pain.  She is rinsing her mouth and gargling with plain saline regularly. As I mentioned in an earlier post, sores in the mouth, esophagus, and gut are an expected part of the side effects of chemo and radiation.  Her appetite is gone, so she is drinking Boost+ for nutrition, and she also tolerates luke warm Chicken Noodle Soup. She is doing a great job using her incentive spirometer and drinking a lot of water.

She is exhausted from the side effects of the treatment, so she had a hard time even getting enough energy to take a shower this afternoon.

But, great news:  So far, her temperature is normal and her lungs are clear.  She is watching The Simpsons on TV right now, and is laughing up a storm.

Isolation

She got a little more clarification on her isolation status.  Getting the flu while starting treatment is an unusual situation, so they have to "think outside the box".  Since her immunity is going to be so low for so long, they will probably have to continue the Tamiflu for longer than normal. The oncology team is working closely with the infectious disease doctors to figure out a plan.

Visitors

Brother Mike, Pam, and Dad Don

Brother Mike and Father Don came up to Pam's Penthouse for a visit.  Good to see them!

We had a great Skype Session with Jason, Alyssa, and Austin.

One of Pam's "Kids", Keith, is coming for a visit tomorrow.

Video Links

Pam's sister in law, Cynthia, sent her a link to this video.  We find it entertaining, because it includes a lot of the same scenes you see here at the hospital or in an outpatient infusion center:  Stronger Cancer Video

The oncology nurses here at OHSU think this video is hilarious:  S***t Cancer Patients Say The young man in the video's name is Woody Roseland and he went through hell and back again with osteosarcoma.  He recently gave a talk at TEDx Mile High called You Are Here ... very, very impressive.

Day +5 since transplant, +21 since maple bars.

New Routine

Everything is Better ...

...since my last post.  The "bathroom issues" are under control, and Pam has been sleeping well, which makes all of the difference in the world.

Day +3 Board

Waiting...

...for at least a couple of weeks before we know whether or not her new stem cells are "embedded" and producing her new immune system. In the meantime, all of this intensive medical therapy is designed to stave off infections and kick start her immune system.

The Routine

"Mmmmm Breakfast!"

Pam is taking up to 10-12 pills at a time in addition to having up to 3-4 different medications running by IV at different times of the day. Pills include all kinds of "anti-pills": anti fungal, anti viral, anti biotic, anti emetic, etc; and other "protector" pills: for her liver and stomach.  IV fluids include drugs to stimulate formation of her new white cells and protect the immature stem cells.

As you know, she had her stem cell transplant on Feb. 13th, which looks just like a miniature blood transfusion. The difference is that her normal bone marrow has been ablated, and the stem cells are expected to embed in her bone marrow and start producing blood for her again.  But unlike her old malfunctioning stem cells, the new stem cells won't produce leukemic blood.

She has also had 2 units of red cells and one unit of platelets so far. The red cells, of course, are necessary to carry oxygen and the platelets to keep from bleeding.  She is still anemic (low on red cells) and neutropenic (low on platelets) compared to you and me, but the transfusions give her enough red cells and platelets to keep her going.



Incentive Spirometer

She has been very good about using her incentive spirometer (the "suck machine") to keep working her lungs which will help stave off pneumonia or pulmonary edema.  She has also been drinking well over 2 liters of fluid a day, which helps protect her kidneys. 

Isolation

Because she tested positive for the flu, she will have to say isolated in her room for at least another week, maybe longer. Her oncology team is consulting with the infectious disease specialsts, and they will make that decision.  Since she can't walk the hallways, I have ordered an aerobic step that she can use in her room.

So far, so good.  No fever, no lung problems, bathroom issues resolved, at least for now.

Other Important Matters

The Plot Thickens

I discovered another clue to the maple bar scarcity from this propaganda on a reader board in the cafeteria. 



My Brush with Greatness

I think I forgot to mention that I saw my good friend Cal Ripken at an event in San Diego last month.  Here is a picture.

Thought for the Day

Found this little piece of inspiration in the Sunday Funnies.



Thought for the Day

Most Importantly

Very Good News!