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!



Rough Times Begin

Here We Go

Mt Hood
from the Penthouse

The side effects of chemo, radiation, and drug therapy hit Pam pretty hard today, right on schedule.  Everyone has told us to expect these side effects a couple of days after the transplant.  Today is +2 and she is nauseated and fatigued with lots of "bathroom issues". She didn't get much sleep last night and so far today has only been able to eat a small bowl of cream of wheat.

She received 2 units of red cells yesterday, and I am guessing she will be getting her first unit of platelets since we started the transplant process very soon.

She has been getting some thick mucus in her mouth and throat, which is probably the first sign that she may be developing mucositis.  This is caused by the sloughing of the lining of the digestive system: mouth, gums, throat esophagus, and gut. She has started gargling with saline.  She had terrible mucositis during the induction chemo, and other than nacotic meds, plain old saline seemed to be the most effective thing available for pain relief.



Pam and Jason

 Right now, there is an incredible view of Mt. Hood from Pam's Penthouse, but she is taking a nap and trying to get her stomach composed with the help of Atavan and Compazine.

Jason and Alyssa visted last night, and Pam got to see grandson Austin from our window. It was great... really lifted her spirits.

Maple Bar Irony

Yesterday morning, I bought a variety of 2 dozen delicious greasy doughnuts (which included maple bars) and a valentine's day card for the staff here.  (I have learned from experience that this sort of contraband is worth it's weight in cholesterol.)  I was going to take a maple bar from one of the boxes for myself, but thought it would seem sort of chintzy to give them one box with only 11 doughnuts, so I didn't.  Then late yesterday morning, I checked the coffee shop on the 9th floor, and they had sold out of their maple bars. 

Things are not always fair in love and maple bars.  You can quote me.



Transplant Day, Part Deux

Routine

Day Zero
Room Board

Now that the first unit of stem cells has been transfused, Pam is an allogeneic stem cell recipient veteran.  After months of central catheters, tests, transfusions, xrays, drugs, radiation, chemotherapy, and general indignity, the first unit of stem cells was no big deal.



Me and My Sweetie

The second unit of cord blood was just as non-eventful as the first. It was started at 3:30 and it was complete by 4 PM. Pam's nurse, Kris, hooked Pam up and monitored everything while Dr. Dao, one of the "Heme-Onc" docs here at OHSU watched. Dr. Dao looked a little bored, but was very nice and patiently answered all of our questions while we waited for the stem cells to swim down the little tube in Pam's chest.


Smelling a Cure

Pam, Dr. Dao, and Nurse Kris

Pam feels pretty good, but she is a bit aromatic.  Let me explain:  DMSO is used as a preservative for the stem cells. To be charitable, it has a "distinctive smell", like cabbage and onions soaking in formaldehyde and left in the hot sun. That smell will permeate the room until it is eliminated from Pam's system. I am now affectionately calling her "Stinky".  She hasn't taken to it, yet. It often takes a little time to get used to a good nickname.




Spying on Mark's House

 Next

Now we will settle into a routine that will be much like her first round of "Induction" Chemo:   She will lose red blood cells, white blood cells, and platelets and will get transfusions to replace the red cells and platelets. 

In the meantime, because of the loss of her white cells, she will be very prone to infection and will be treated with antibiotics, anti fungal agents, and antiviral agents. She will also be treated with some drugs to stimulate stem cell growth.

The whole trick here is to keep her from getting infections while we wait for the little stem cells to do their thing and "engraft", so Pam can start growing her own immune system again.

 

Valentine's Present

 I bought Pam a spotting scope.  Very romantic.





Big Moment

As I said earlier, the stem cell transplant is pretty anti-climatic.  The first unit of umbilical cord blood is done, and it only took about 15 minutes.  The second unit will be done around 4 PM.  Pam tolerated everything fine.  She was skyping with Alyssa and Austin until just before they started.

Here are some pictures from the first unit, beginning about 12 Noon.  As you can see, not a lot of volume, but it is rich with life saving stem cells:



Unit One
of Stem Cells

Mom, Dad, and Pam
Getting Jazzed Up Before the Transplant

Precious Cargo

All Systems Go!

Don't let the Biohazard label alarm you

The BIG DAY

Day Zero

Dr. Weinstein's Original
Drawing of Treatment Options

This isn't exactly like Christmas morning when you were a kid, but it is a huge day.  Today is Day Zero... it has finally arrived.

Pam will be getting her bone marrow transplant sometime today. It has been 7 months since Pam developed Acute Myeloid Leukemia and Dr Weinstein drew out all of the treatment options pictured here.  Since that time, Pam has gone through all of this in preparation for today:

• Delayed Diagnosis: She was originally diagnosed with a sinus infection and given antibiotics. We went to an Urgent Care Center in Manzanita, and she went back to her primary care doctor's office twice more before she had a blood test.
• Emergency Room Visits: After Pam's family physician got the blood results back, we were called at 8 PM and told to go to the nearest ER and she was admitted that night.  This was the first of several trips we have taken to the Good Sam ER.
• Induction Chemo: Dr. Weinstein started Pam on chemotherapy that successfully put the leukemia in remission after 26 days in the hospital.  Pam was VERY sick during this time and ended up in ICU for 5 days during the hospitalization. Ultimately, the induction chemo did it's job and put the leukemia into remission.
• Three Rounds of Consolidation Chemo:  It was originally planned to have 3 series of consolidation chemo treatments.  With some forms of AML, that is all that is needed for a cure.
• Genetic Testing:  Through genetic testing, we found out that Pam has a particular form of AML called FLT-3, so the only potential cure is a bone marrow transplant, so she was referred to OHSU.
• Donor Matching:  Brothers Mike and Mark were both tested as donors, and neither was a match.  Out of 20 Million people in the bone marrow registry there were no matches.  This left the only option as a double umbilical cord transplant, and, fortunately, there are 2 units of umbilical cord blood all ready to go today.
• Final Round of Chemo and Radiation:  At OHSU, she has spent the last 10 days having total body radiation and one final round of chemo in preparation for the big day.

My Flu

 "My name is Jerry and I am a hypochondriac"... After Pam tested positive for the flu, I think I may have panicked a bit... my very mild symptoms continue to be just that, very mild.  I have a little bit of a scratchy throat and no other symptoms. Unless I develop some other symptoms, I am going to take Pam's parents, Don and Bonnie, to the hospital today to witness the bone marrow transplant.  I will take some pictures and update the blog at the end of the day today.

Thanks

Thanks again to everyone for all of your kind words, support, well wishes, and prayers.  If you are so inclined, one more prayer or throwing a positive vibe couldn't hurt.

The Flu

Pam's test results came back positive yesterday for Influenza A.  This means that she will remain on isolation in her room for quite a while, and that she will be dealing with flu symptoms on top of everything else.  Her immune system is not totally compromised by the chemo and radiation yet, but it will be sliding downhill for the next week or so.  Dr. Gajewski started her on Tamiflu before even waiting for any test results, and her flu symptoms seem to be improving, although it is difficult to sort out flu symptoms from some of the chemo, radiation and drug side effects. Hopefully, she will be pretty well over it before her immune system becomes useless.  If not, she will have to deal with her flu symptoms on top of everything else until her new baby immune system is up and functioning, which is several weeks away.

On top of this, I think I have come down the the flu myself, but I don't really know.  My symptoms are very mild: very slight headache and a slightly scratchy throat; that is about it. Because of this, I will need to quarantine myself for a while and I can't go to the hospital until this clears up.

Transplant tomorrow.  Bad timing. This sucks.

Transplant Minus 2

T-3 Board

Not much new to report.  Pam's cold seems to be getting better, but she is very fatigued. She had a chest xray, which looked good.  We are still waiting for lab results from her sputum sample to rule out the flu. She slept off and on while we watched TV together last night.  Her attitude is great, as always.

Today is T-2, so she will be getting her last dose of chemo tonight at 9 PM.  She gets one day of rest on Tuesday before the transplant on Wednesday. Even with the great view from her room, things are getting boring, because she can't walk the halls. Big news: I am nearly caught up on laundry. Turns out that that the laundry fairy has not been magically cleaning my clothes for the past four years. Another mystery solved.



Mark's House
from Pam's Room

Pam's brother, Mark, lives across the Willamette River in an area of Portland called Sellwood.  Yesterday, we spotted Mark's house with binoculars from Pam's room, called him up and flashed our room lights, and he was able to spot Pam's room from his house.  Other than my visual sighting of maple bars in the main OHSU cafeteria, it was the most exciting moment of the day.

Bad Timing for Sniffles

Cold

Pam caught a cold. Normally, this would be a non-event, but when your immune system is compromised it can be a big deal.  So, she has been given Tamiflu and is getting her sputum analyzed to make sure she doesn't have the flu.  As a precaution, she is on isolation now.  All nurses gown, glove and mask before entering her room and she is confined to her room. I am even more grateful that she has the Penthouse Suite now.  Unfortunately, no one is allowed to visit until the coast is clear. Under the theory that she already has my germs, I am allowed in.

Tram

Had a nice talk with my son, Ben, yesterday. Every time I talk with him, I become a little more proud of him. He is continuing to work really hard at overcoming all of the mistakes he made as a teenager, and he accepts responsibility for his actions without equivocating.  I have told him more than once that he is more mature than I was at his age. I wish I was able to see him and his little family more.  I sent him this little YouTube video of the tram taken from Pam's room and he got a kick out of it:  Tram Video

Personal Note

I just found out via Facebook that my good friend, Tim Wassmuth, lost his mother, Eileen.  She was actually his step mother, but she was always Mom to Tim, and he has always been very devoted to her. For those of you who do not know Tim, I can tell you that he will handle this with same grace and compassion that he has handled every other challenge in his life.  Tim has very debilitating Multiple Sclerosis, but he is one of the toughest people I have ever met. He will just handle it.  I'm proud to call him my friend and mentor.  Pam and I will say a prayer for him and his family when I get to the hospital later today, and I'll give him a call later.

New Digs

New Room

Hallway on 9th Floor

Late yesterday afternoon, Pam's nurse told us that we could move to a new room. We felt like the Jeffersons on TV: "movin' on up to the Eastside, to that deluxe apartment in the sky".  (Don't ask how or why I can remember things like that, but I can't remember my own age.)






Namby Pamby Tram
from 9th Floor Landing

It is the biggest room on the ward with the nicest view. They normally don't do this, but since Pam is going to have the double cord blood transplant, she will be in the hospital a lot longer than most other patients. It was VERY nice of them.




The room is at least twice as large as the room she was in and has a view of the Marquam bridge, Ross Island Bridge, the south waterfront, Ross Island and the south end of Downtown Portland. Here are some pictures of the view and a video of the new digs.




Pam's Room on the Top Floor
on the Extreme Right
Patio is on 9th Floor



View from Pam's New Room










We should be able to see Mt. Hood
on a nice day










 Chemo Begins
Total body radiation is done, and Pam hasn't noticed any severe side effects. Her skin is a little dry and she gets a little queasy immediately after treatment, but that has been it so far. She got her first dose of chemo last night at 9 PM. I talked with her on the phone at about 10 and she was doing OK with that so far.

Back at the ranch, I am catching up on laundry, and have been working with our landlord to get new carpet and window coverings as part of the preparation needed after Pam gets out of the hospital.

I am really happy that Pam was moved.

Big News

Don't worry about keeping up with important world events, I have it all covered.  Here is an example: Important Tax News

Requisite Countdown

Final Countdown

Today is a big day.  We are at T-5 and Pam will get her last total body irradiation treatments and will start getting Chemo.  She will get a very strong dose of chemo for four days, then she gets a day of rest on Tuesday, T-1, and then the long awaited transplant on Wednesday, Feb 13th.

I am afraid the transplant itself will seem a little anti-climatic.  It is done in her room, and it is like a very slow blood transfusion.  They use DMSO as a preservative for the stem cells, which has a very distinctive smell, and I have smelled it a couple of times now while Pam and I have walked around the ward coming from the rooms of other patients receiving transplants. I have heard people describe it as smelling like garlic.  I don't think it smells at all like garlic, but it is one of those smells you never forget.  Here is some more information on The Transplant Process.

Yesterday was a Good Day 

Pam's Requisite Stuff

We took our 3 requisite walks, ate our 3 requiste meals, Pam had her 2 requisite radiation treatments, drank her 2 requisite liters of water, and I only got lost in the Rat Maze one requisite time. Requisite is a great word. It should be a requisite part of your vocabulary. Here is a picture of the requisite checklist on the whiteboard on her wall. 

She has also kept the cards from the last hospitalization and her favorite art work done by Andrea and Jordan.



Pam's Favorite
Art Works

Pam's son, Nate, and her brother Mark, niece and nephew Samantha and Zach visited yesterday.  Pam's Mom called and is worried that I am not eating right.  I am actually eating like a pig at the trough because there isn't a hell of a lot else to do, but I am confident I will manage to get some requisite sympathy goodies out of this very soon.  (Worked it in one more time...)


It is 7:45 AM right now.  I have answered a couple of emails and farted around for about an hour. Pam will be getting radiation at 8, and should be back in her room by 9.  Part of the new routine is for me to get her a requisite non-fat, no foam, grande hazelnut latte, so I will do that on my way up to her room. I still get a little embarassed ordering coffee drinks like that, but I am getting more confident about it with practice. I really have no choice, it is a requisite. (OK, I'm done.)

More to come.

Elevators and Hallways

The Rat Maze

Things have been pretty uneventful since Pam was admitted on Monday.  We are getting acclimated to her new surroundings, and falling into a new routine. I have gotten lost on the OHSU campus, hereafter known as the Rat Maze, about 7 times in 2 days.  If I were a real rat in a real rat maze, I would be starving for lack of food pellets. (A little Behavioral Psychology joke there.)  The Rat Maze is an amazing place. I have never seen such an odd collection of old and new buildings perched on the top of a hill connected with skybridges. One of Pam's transporters told us that the only people who really know the Rat Maze are the transport team and the mail deliverers.

Yesterday, I ended up on an elevator with a mother on a gurney and her newborn baby. (I mean REAL newborn.)  The nurse rolled them onto the elevator, looked at me with disgust, and informed me I was on the wrong elevator. I already figured that out when I saw her roll the mom and baby in. I was embarassed and started to explain that I am a little geographically challenged and that I was still getting oriented to the Rat Maze and that I grew up in a place with no elevators at all within 72 miles, so I am easily confused.  Then I decided that would sound lame because I should know how to work elevators and read signs by now. I said congratulations to Mom, because I didn't know what else to do.  She said "thanks".  It was awkward.  One of the baby's first experiences in life was being on an elevator with a lost man getting mean mugged by a nurse. Not a good start.

The BMT Unit

The bone marrow tranplant unit is very nice and modern. To get into the unit, you have to get buzzed in from the nurse's station, then wash your hands thoroughly at a hand washing station, then sign a document stating that you do not have any open sores, flu like symptoms, other communicable diseases and you have washed your hands.  To visit Pam, you have to wear a mask.  I don't have to wear a mask when I am with her... I guess they figure that I have already spread my germs to her.



Pam Talking with
Dulcimer Musician

The unit is huge... 11 laps around the unit is a mile, so my higher math tells me that a lap is about a tenth of a mile.  All of the patients are expected to walk if they are not in isolation.  It is a big deal.  Walking is good for a lot of things, and preventing pneumonia is one of them.  So, there is nearly always at least one patient, usually with their spouse, walking the halls wearing a mask. They have people coming into play soothing music and all kinds of other activities for the patients. This lady is a volunteer that plays some Native American flutes and some sort of dulcimer.  It was very pretty.

The Big Hall

The VA Bridge at Night
Pam and the Duck Bill
 

Bridge Between
OHSU and the VA

Pam's brother Mike and Sis in Law Sandra visited last night. After they left, we got permission to walk around outside the unit. I wanted to show Pam my mastery of the Rat Maze. We walked the hallway from OHSU to the VA Hospital, which is 1/8 of a mile. Pam had to wear a special "duck bill" mask to keep germs away. I think the theory is that the germs laugh themselves to death when they see it.

Starting Treatment

Onto the main topic of our saga.  Pam has started the regimen in preparation for the transplant: Allopurinol to protect her kidneys, ursediol for her liver, omeprazole for her stomach, and IV Micafungin that is an antifungal drug.  She will receive the Micafungin every day for about a week and will begin aggressive chemo with Fludarabine on Friday. The nurses are pushing her to drink at least 2 Liters of fluid a day, walk at least 3 times a day, stay out of bed, breathe deep, and eat. If she doesn't drink 2 Liters of fluid, she will get it by IV.  She has had two Total Body Irradiation (TBI) treatments so far and she hasn't had any side effects yet.  The tough days are coming soon. 

Admit Day at OHSU

Austin

Party Time!

Went to Jason and Alyssa's to mooch some food and beer and watch the Super Bowl in HD yesterday.  (We have basic cable because I am cheap.)  Worked out well for me.  Used the old Leukemia Card.  "Pam really needs to see Austin before she goes in for treatment." and it worked like a charm.

Had a very nice time.  It will be a while before we can use that same scam again, because Pam won't be able to see Austin in person for a few months.

Off We Go

7 AM:  As I am writing this, we are getting ready to go to the hospital.  First we will go to interventional radiology, where Pam will get her new central venous catheter inserted, then she will get officially admitted.  Sometime this afternoon she will her first total body irradiation treatment.

We are so used to going to Good Sam for Pam's hospitalizations that this feels a little like starting a new job or getting ready for the first day of  class at a new school.  Pam's son, Nate, is coming up to visit and will go to the hospital with us.

New Central Catheter

9:45 AM:  Pam, Nate, and I finally got to to the admissions office at OHSU.  It only takes about ten minutes to get here from our condo, but it feels like it has been a long journey.  After a brief admissions process, we went to the Interventional Radiology department, filled out some more paperwork, answered some more questions, waited some more, and Pam was taken into get her new Central Catheter placed under ultrasound guidance.  Nate and I had some lunch.*



View from Top of Tram at OHSU

1:30 PM: I saw Pam briefly in the recovery room, and we are now waiting for her to be transferred to her new temporary home on the 14th Floor of the Kohler Pavilion at OHSU. I am updating the blog from the top of the tram, which is on the 9th floor of the same building. It has only been 3 1/2 hours, but it feels like I have been waiting around here for a week. I would like to get this show on the road!! (I am nearly certain now that patience is not one of my virtues. I have tried to get people to say something like "Aw, Jerry, you are too hard on yourself, you're very patient!" And no one has stepped up to bat.)

1:51 PM:  Running out of stuff to write about.
1:52:35 PM: Still nothing.
1:54 PM: Officially bored. 
1:57 PM:  Look up the roster of the new minor league baseball team in Hillsboro: The Hillsboro Hopps.  They have a pitcher listed on their roster named Jose Jose.  I am not making this up.  LOVE IT!!

 

2:02 PM: Call from Pam, she is in her room. Nate and I go up to the bone marrow transplant ward, wash our hands, and sign in.

New Home

I will take a better picture
when the weather is nicer

The room has very nice view, but not the "killer view" of some of the other rooms.  There are about 30 rooms in the transplant ward, and Pam's nurse said they are all full.  Imagine that:  30 other people, right now, going through this same thing in the rooms up and down the hallway.  In many cases, the other patients have it much worse. Many of them come from Eastern Oregon and Idaho, so their family has to make arrangements to stay in Portland for up to six months. I keep saying we are lucky in many ways.

Skype and Video

As you all know, Pam will be in the hospital for a long time, probably six weeks, maybe longer. So, of course, she is going t miss her grandson. We plan on using Skype so we can video conference with him, but it will still be hard. Here is a short video "tour" of Pam's luxury accomodations.

4:30 PM:  Pam is still not back from radiation therapy.  I am BORED!!!!

4:39 PM
Day 1 is Almost Done!

4:34 PM:  She is back!  Finally able to get something to eat.

* GREAT NEWS: Red Beans and Rice at the cafeteria!!! But, the quest for a maple bar continues.