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.

Testy and Chatty

Farewell Party

Haile Henderson

Aubrey Skye Henderson

Austin Specht

We had an informal open house last night in our little condo (or, as I call it, Party Central) to bid farewell to Pam's old immune system. 
We had a very nice time visiting with our neighbors, friends and family.  I took a lot of pictures at the party, but none of them turned out. So you will have to settle for pics of our Grandkids, which is more entertaining anyway.

Stress Central

It is obvious that we are both getting a little more stressed as the time to go to the hospital gets closer.  I tend to get a little testy and irritable when I'm stressed, while Pam tends to get a little chatty.  As she gets more chatty, I get more testy, which, of course, makes her yet more chatty.  But we both recognize it and tolerate chattiness and/or testiness in the one another pretty well.  My only regret, really, is that we didn't meet one another a long time ago.  Other than my son and family, she is the best thing that has ever happened to me.

I am taking the next two weeks off while Pam goes through the next round of chemo and the total body irradiation.  I will update this blog more regularly during that time.

The adventure continues.  Thanks again to everyone.

All Systems Go

One Day Reprieve

Pam and I went to visit Dr. Carol Marquez in the Radiation Oncology group at OHSU.  She was a very pleasant lady. She decided that Pam will only need 8 radiation treatments instead of 9.  "We based 9 treatments on a protocol for cord stem cell transplants developed at Duke, but we're not going to use that one."  SO.... big news, Pam doesn't need to go into the hospital until Monday, so we won't be watching the Super Bowl from the hospital.

Radiation Treatment

On Monday, she will get admitted about 10 AM, will have another central venous catheter inserted just below her collar bone, and get her first Total Body Radiation treatment (TBI).  The TBI treatments last about 20 min or so.  During the treatment she will be placed in a contraption that looks like a frame with a bicycle seat and will be expected to sit still.  Here is a picture:

Along with the radiation, she will be getting stronger chemo than she has had before.  (But remember, she isn't really sick now, so she will be able to tolerate stronger chemo than she would have been able to tolerate last July.)

All Set

We are all set now... over the past two weeks, she has gone through a bunch of additional Dr.'s appointments, additional tests and signed a bunch of consent forms.

We are having an open house on Friday to big a Fond Von Boyage to her old immune system.

So, Pam moves to the hospital now Monday, Feb. 4th to start this odyssey and the transplant is still scheduled for Wednesday Feb 10th.  We are now T-13. 

Tree Karma

Going Away Party

Superbowl Sunday is Feb. 3rd, only 8 days away, and we are both getting nervous. Go 49ers! And, there was something else... oh right... Pam is going into the hospital at OHSU for her stem cell transplant on the same day. So we are T-18 today for her transplant on Feb. 10th.



Immune System
Going Away Party

Later today, we are going to go out to dinner with some friends at Oba. I sent them an invite pictured here. I amuse myself sometimes.

The Final Push

Pam had all kinds of tests and appointments at OHSU this week in preparation for her hospitalization. Unfortunately, I was out of town all week and I wasn't able to help her, but, thankfully, her Mom, Bonnie, took her to her appointments on Thursday, which included a bone marrow biopsy. They also did a blood draw on Thursday and discovered she was critically anemic, so she got 2 units of red cells. It sounds like it was a LONG day.

San Diego

I was in San Diego this week at what is called the CSM Conference for the American Physical Therapy Association from Monday thru Thursday.  I have got to admit, it was great to get some warm weather and sunshine, although I was in the convention center most of the time. Even though Pam was exhausted, she picked me up at the airport Thursday night.  I could have easily ridden the Max, and I told her so, but she insisted.
On Friday, I had to go on the road again to consult with some of our Clinicient clinic sites in Cottage Grove and Corvallis, so I was essentially gone all week long. I am bushed.  Pam is busheder.

 Carpet and Drapes

To prepare for after the hospitalization, we are getting bids on new window coverings and drapes this coming week. I am also going to get someone to look at the HVAC to see about better filtering and before Pam is released from the hospital, I will have the place thoroughly clean.
We will also have a hand sanitizing station, masks, and foot slippers for guests. We will be eating highly processed food on paper plates and disposable utensils and use nothing but paper towels in the kitchen.  (I am considering beer to be a highly processed liquid bread.)  We will be sacrificing some trees in the process, but I think I am OK in the karma department because my Mom more than makes up for it... she only uses about 1/4 of a paper towel at a time, and only when absolutely necessary.  Assuming Mom's Saving Trees Karma is at least partially transferrable, which I think it should be, I figure I can use paper towels with abandon for the rest of my life and still have 3 or 4 trees to spare. (I totally understand if you don't follow the logic there, it's OK.)

As we learn more about Coming Attractions, I will let you all know.  Thanks again for all of your kind thoughts, words, and prayers. Believe me, it is all appreciated.  The Big Adventure continues.

Countdown Has Started

#doprah on Twitter

Work and Doprah

It has been quite a week.  Work has been brutally busy and stressful. I started work at 5 AM twice this past week so I could get caught up on some projects; which helped, but some of the lower priority stuff I need to get done has been pushed aside for now.

Last night, Pam caught me up on the big news and I was in bed by 9 PM after watching part of Lance Armstrong's "Doprah" confession. I feel so duped by that guy... I really wanted to believe his whole story. Go to twitter and look at #doprah if you are into that sort of thing. What a shame.

It is now 3:30 AM and I'm wide awake, so thought I might as well update everyone on the big news,

Transitioning

Pam had an office visit with Dr. Weinstein yesterday and found out she is out of the woods from her final round of outpatient chemo.  Her white blood count is still low, but not dangerously low, so we have to be careful, but she can go out in public without wearing a mask and we can relax a bit.  It looks like we accomplished our goal of keeping her out of the hospital this time!

Her appointment with Dr. Weinstein yesterday will be her last one for quite a while.  Her care is now transitioning to Dr. Holtan at OHSU and she will remain under Dr. Holtan's care until she recovers from her transplant.  I feel bad about missing Pam's appointment yesterday. It has been quite a journey with Dr. Weinstein since July, and I wanted to thank him in person for saving Pam's life.  I think I will drop him an email.  He is a great guy.

A Schedule At Last

We finally have a schedule for the transplant. Barring the unforseen, she will be admitted for the transplant on Sunday Feb. 3rd.  Beginning on Monday, Feb. 4th, she will have a new central catheter line inserted, begin what will hopefully be a last round of chemotherapy, and start radiation therapy. We will find out exactly how many radiation treatments she will be receiving after she consults with the nuclear medicine specialist, but we know that it will be around nine treatments. The transplant will occur on Wednesday, Feb. 13th. 

There is a convention for tracking all of this like a space launch: Feb. 3rd will be T-10 (ten days prior to the transplant), Feb 13th is Day 0, Feb 14th is T +1, etc.  We expect that Pam will be in the hospital for six weeks, so she may be discharged the week of March 11th.

All of this may slip by one week, but it looks like the Feb 3rd admission and Feb 13th transplant dates are pretty good bets.

Betty is the triage nurse for Dr. Holtan and has put up an online calendar with a schedule of all of Pam's appointments next week that need to happen in preparation for the transplant.  I have recited this before, but she needs consults with respiratory therapy, nuclear medicine, social work, an EKG, echocardiogram, a bone marrow biopsy, and some more blood tests among other things.

So, today, Saturday, Jan. 19th is either T-25 (25 days to the transplant) or D+1 (1 day after Doprah).  Back to bed.

Crossing the Rat Maze

Fingers Crossed

Pam has not been feeling well, and I think she is fighting some bug, but her blood counts are all coming up nicely, she is not running a fever, and it looks like she is close to getting out of the woods. If we can keep her out of the hospital after the last round of chemo, it will be a first.

All Systems, uh, Wait a Minute, Go!

As you may know, we had an important early morning appointment with Dr. Holtan at OHSU to learn more about the timing of the next steps and to get the ball rolling on this whole process. We have been looking forward to this appointment for some time now, and neither of us slept well last night.  As luck would have it, our car didn't start this morning of all mornings.  DEAD BATTERY!!  I called our friends and neighbors, Dave and Barb King, and Dave drove us up to OHSU. (I owe Dave a beer, or something.)

It looks like everything is in process for Pam's "double cord stem cell transplant" and it may occur as soon as the first or second week of February.  There are lots of precious umbilical cord blood units that are a good match and Dr. Holtan and her team are analyzing what they have to select the best two matches available.  The timing now is mostly dependent on getting Pam through a series of tests and procedures.

The Rat Maze

Prior to being admitted to OHSU for the transplant, Pam will be scheduled for a chest xray, nuclear medicine consult to prepare for her radition treatment, pulmonary function tests, a social worker consult, EKG, echocardiogram, and placement of a new "Neostar Triple Lumen" central catheter.  She will be busy, and, unfortunately, I will have to be out of town on business next week, so I will probably have to lean on Pam's family for some help in my absence.

An Interlude

Holed Up

This weekend Pam and I are staying holed up and away from people.  Her white count is beginning to rebound, but she is still neutropenic and there is a bad flu bug going around. She doesn't feel great, but she isn't sick either. So staying holed up and away from people seems wise at this point.

Quiet Time

Saturday morning is my time to write in this blog, catch up on industry reading, post tweets, write a blog article for the Clinicient website, create videos and user guides for Clinicient, and drink coffee.  In 3 or 4 uninterrupted hours on Saturday morning, I feel like I can get more done than in a 10 hour day during the week and I thoroughly enjoy it.



Nicaragua

Planning and Dreaming

I am going to show Pam this great article from the NY Times 46 Places to Go and we can dream a little about a beautiful, exotic, warm place to visit when she is finally recovered from her leukemia. From what I can tell, if all goes well, it may be 2 years from now, but who knows?


Rio

OHSU Monday

We are anxious about Pam's appointment with Dr. Holtan at OHSU on Monday.  We should finally get a good idea on the timing of the transplant and some direction on next steps.

Stay tuned....

Blood and Nesting

Blood Numbers

Platelets Today:  It has been one week now since the last round of Pam's outpatient chemo ended and, just like clock work, her blood counts are all coming down.  Her platelets are getting dangerously low, so she will be getting a unit of platelets today.

You might remember that platelets are the critical portion of your blood cells that enable clotting, so not having platelets is dangerous because even small cuts or internal injuries can cause serious bleeding problems.  Pam is getting small petechiae (peh-TEE-key-ay) on her legs and arms now, which is another sign that her platelets are too low. Here is an article on low platelets that shows a picture of petechiae.  (Feel free to throw around the word petechiae at your next cocktail party... for example, "That painting is only a pastiche of petechiae on a fair skinned irish boy.")

Pam's son, Nate, is up for a visit from Eugene, so I have asked him to take his Mom up to get her platelets.  It will be a good chance for them to catch up.

Red Blood Next: Of course, Pam is also getting anemic again and will require a couple of units of red blood very soon, probably Monday or Tuesday this week.

White Blood:  The number that we look at closely is called the ANC, or Active Neutrophil Count.  This is a count of the normal white blood cells that are actually doing their job fighting germs.  Pam's abnormal leukemic white blood cells are nothing but big useless blobs.  An ANC below 1.5 is abnormal.  Pam is at .9 right now and when her ANC gets below .5 she is considered neutropenic and we have to be VERY careful to try to keep her from getting an infection and being put back in the hospital. Ultimately, she will get to the point that her ANC is undetectable, and she will begin to build her white count back up. But she has to do it on her own.

Nesting

Pam went into a full fledged nesting routine yesterday.  She is, understandably, getting anxious about the stem cell transplant and the 100 day critical period following discharge from the hospital.  There are all kinds of things that we need to have ready for her return home, including lots of disposable stuff like paper towels, paper plates, disposable disinfectant wipes, etc. The instructor at the transplant class said "You can save the trees later." I keep telling her that I will have plenty of time to get this stuff together while she is in the hospital, but:

1. She knows I will put it off until the last day or so before she is discharged;
2. She has a justified lack of confidence in my decision making when it comes to purchasing even simplest household stuff.
3. She enjoys shopping anyway.

She even has to throw out all of her makeup, lotions, potions, and other female necessities and get new stuff to use when she gets out.  We also need, believe it or not, a dedicated storage cabinet just for her medications and medical supplies and the storage cabinet is not supposed to be in the bathroom or the kitchen. The AVERAGE number of prescription medications after transplant is 20, so she will get one of those super-jumbo pill boxes when she is discharged.

Transfer of Care

Dr. Weinstein, Pam's primary oncologist who has been taking care of her since July, will continue to monitor things as Pam recovers from this round of chemo.  We have an appointment with Dr. Holtan at OHSU on Monday, Jan. 14th and we should have a pretty good idea of the timing of the transplant by that time.

Now that the transplant is finally on the horizon, I have got to admit that I am getting a bit nervous myself.  I swear that hill up to OHSU is growing a little every day.

Zoo and Brew

Last Outpatient Chemo

Pam's last session of outpatient chemo ended at 1:30 AM on Saturday, Dec. 29th when her home infusion pump set off an alarm that sounds like it is coming from an Italian police car.  The alarm wakes me up in about half a nanosecond, but, unbelievably, Pam can sleep through it.  I have to wake her up, because I don't know how to shut the damn thing off ... "oh, sorry", she says.  After shutting down the alarm, I detached the pump for the last time, flushed her PICC line with saline, and then heparin, and rolled back into bed. It only takes a few minutes and we are both back to sleep.

Our next goal is to keep her out of the hospital between now and her transplant.  So far, she has had to be hospitalized every time.

Yes, Lily was cute.
Pam has hundreds
more pics if you are interested ...

The Zoo and the Gorge

We decided that this weekend is really Pam's last hurrah before her transplant.  When she becomes neutropenic again in about a week, she will not be able to go anywhere outside our condo or a hospital room until at least the middle of 2013.


Did I mention it was cold?

Yesterday, we took the train to see Lily, the new baby elephant at the Portland Zoo.  I mistakenly thought we would just go to the zoo, wait in line to see Lily, ooh and aah, take hundreds of pictures, and then go back home. Which we did.  But, it turns out it just wouldn't be right to go to the zoo without oohing and aahing over every animal in sight. Even the reptiles and rodents. So, we did that too.

Today, we are going up the Columbia Gorge to the Skamania Lodge.  Clinicient had a retreat there a few weeks ago, and it is a very nice, peaceful place with a beautiful view, and it is only about an hour away. Here is a map.  On our way, Pam wants to stop at an outlet store and I plan on visiting Walking Man Brewpub (yum) as part of my philanthropic efforts to sustain the local brewing industry in the Northwest.

Next

Here is the plan:

1. Relax today and enjoy Skamania.
2. Keep Pam out of the hospital until the transplant.
3. Uh... I guess that is the whole plan.



Transplant Minus X

Chemo Christmas Eve



Infusion Room at Compass Oncology

"This is Boring"

Pam is starting her final round of outpatient chemo today.  As I write this, she is dozing a bit in a recliner in the infusion room with an old movie named Polyanna playing on TV. This round of chemo will end on Saturday, Dec. 29th, so we are going to go to the Skamania resort on the 30th and 31st for some R and R. 

This will be her last chance to get out of Portland for many months.  After the effects of the chemo begin to take effect, about 2 weeks from now, she will become anemic and neutropenic again, so we will have to stick close to home for blood transfusions and begin to watch her closely again for any signs of an infection. After she begins to recover from this round of chemo, she will be admitted to OHSU for her transplant.

Babysitting

Pam and Austin
Dec 14, 2012

Pam got to babysit little Austin while Alyssa met some of her friends for brunch. Pam wants to get as much Austin time in while she is able.  She won't be able to be around babies for quite a while after the transplant process begins.

Timeline

I don't abuse cats (even though I don't like them much), I like kids under the age of 10, and I am friendly to old people.  Other than that, I have few virtues and patience is not one of them. My lack of patience with the unknown timeline for Pam's transplant has been making me a little less charming than normal. But now, we can at least guess that she will be admitted in the last week of January or first week in February.  Based on what we know about the process, she should get out of the hospital sometime in mid-March and off of the 100 days of isolation at home by late June or early July. 

Good to know.

Glad Tidings-Great Joy

Best News Ever

We received the news we were hoping for yesterday after four nerve wracking weeks waiting... Pam's umbilical cord stem cell transplant has been approved!!!  Pam was on the phone with Dr. Holtan on Tuesday, and at that point, she still had not heard anything back from the insurance and told Pam she would need another round of chemo to keep her in remission while she continued to work to get this procedure approved.  Yesterday, Pam was talking with the insurance coordinator at OHSU, and was told "it looks like this has been approved".  We finally received official word from Dr. Holtan late yesterday.

Jason, Alyssa, Austin, Keith, and Nate were over to our place for their family Christmas dinner.  Pam was on the phone so much yesterday that things were a bit rushed, but we pulled it together.  It was great to be able to share the news with everyone.  Little Austin is getting cuter all of the time.  I managed to scare him while I was holding him, and now he cries at the sight of me... that's OK, I'll MAKE him like me sooner or later.

A Chemo Christmas

Now that the transplant has been approved, Dr. Holtan and Dr. Weinstein both still recommend that Pam receive another round of consolidation chemo to keep her in remission.  It is all a matter of timing.  Dr. Holtan needs at least 10 days to get everything ready. So Dr. Weinstein scheduled her for another round of chemo beginning this Monday, Christmas Eve. She will need another PICC line inserted in preparation for this last round of outpatient chemo, which will be done at Good Sam tomorrow (Friday). This round of consolidation chemo will be done as an outpatient and it is the same process we are now familiar with:  Chemo at the infusion room at Compass Oncology Mon, Wed, Fri. After each session, she will be fitted with a pump that will give her another dose overnight.

Transplant and Timing

The transplant won't happen until about five weeks after her chemo, depending on her blood counts.  So, we are looking at possibly the last week in January.  Since this will be an umbilical cord stem cell transplant, her hospital stay will be longer than it would be if she were receiving adult cells.  She will be in the hospital at least six weeks, so I'm guessing she won't get out of the hospital until mid-March.  After that, she will be quarantined under "house arrest" for 100 days or so under constant supervision.  The whole process will take a year or longer.

In preparation for the transplant, she will be getting some more tests, and will have minor surgery to get a new central catheter placed in a vein underneath her collar bone.  Just prior to the transplant, she will get one more round of very potent chemotherapy and total body radiation.

Very exciting!

The Hill

I previously made a big deal about riding my bike up the hill to OHSU. Now that the transplant is real and time is getting closer, the hill at OHSU is looking bigger. One more confirmation that I have a big mouth.

Just Coasting

Absolutely nothing new to report here.  We are still anxiously waiting for news on getting Pam's stem cell transplant from umbilical cord blood approved.  Two units of the blood have been identified in the registry, but since using umbilical cord blood is unusual for an adult transplant, we have to go thorough this wait for approval.  I am sure we will finally get some news on this process this week.

This past weekend, we moved our hide a bed couch to the beach house in Manzanita and spent the weekend watching it storm from there.  I read most of the time and we watched the best movie ever:  It's a Wonderful Life with Jimmy Stewart and Donna Reed.  It is only about the tenth time I have watched it, and I still can't get through it without crying. (I've decided to man-up on the fact that I cry occasionally.)

Pam was able to babysit Austin last week, and she was in heaven. She is really having a tough time knowing that she won't be able to see or hold Austin for at least 4 months following the transplant.  I have set her up with a skype account, so she will be able to "visit" Austin on video when the time comes.  I will also publish her skype address here for the rest of you so you can "virtually visit" when Pam is in the hospital and in quarantine here at home.

I will let everyone know as soon as we know more on the status and timing of the transplant.

More to come.

Limbo

Insurance Approval

It is probably no surprise that Pam's stem cell transplant is being held up by insurance authorization and appeals. Pam's oncologist at OHSU, Dr. Holtan, is a pro in all of this.  Here are the emails back and forth between Dr. Holtan and Pam that explain the situation:

• From Dr. Holtan: Hi, Pamela!  I wanted to let you know where we currently are with regards to your transplant. I am appealing to your insurance for coverage of the costs of your cord blood cells as separate from the transplant itself.  Your current benefits would not be adequate to cover the acquisition of the cord blood cells and costs of supportive care of the transplant.  Fingers crossed, I hope to rush this and have good news for you.  I will continue to keep you updated every step of the way.  Hang in there!

So, we are in limbo.  Pam is taking it in stride.  She wants to be able to babysit her grandson, Austin, this coming Thursday and wants to make sure that doesn't interfere with anything. 

• Here is Pam's response: Thank you for dealing with the insurance coverage, I know that can be very frustrating. Also thank you for the update. I appreciate all your help.I was going to check with you about something I would like to do next Thursday, the 13th. My daughter has asked me to babysit my 4 month old grandson while she works. He's very healthy and has not been around other kids.I know the schedule is up in the air at this point, but if I can plan this it would mean alot to me. I know once I go into the hospital it will be a long time before I can babysit again. Staying healthy is the priority, so I will do what you think is best at this time.Thank you again for all your help.
• Dr. Holtan: Absolutely, and thank you for your patience in all of this.  And now is an excellent time to babysit your little grandson!  I hope to be able to give you some more details soon.  Thanks! 

I think that exchange speaks volumes.  I have all kinds of confidence in Dr. Holtan.  She is a real professional, and I am sure that she will be able to work through the system, and that we will get Pam's transplant done. But, of course, it is still frustrating. Anyone who has read this blog knows that I am very grateful for the care Pam has received so far. 
I previously wrote about how grateful that I am for Pam's great care in my blog series that I do for Clinicient:  Grateful for Great Care.  But, until we get over this hurdle, it is hard to be grateful, and it is doubly hard for me to understand how any rational person could be so virulently opposed to meaningful health care reform that includes defined benefits. I have worked in health care business my whole life. Sorry to report, the system is broken.  In fact, it isn't a system.  This is just one more story out of millions of stories that prove my point.  (Sorry, off of my soap box now.)


The picture that will haunt Aubrey forever

Off to Seattle

My son, Ben, and Andrea had their second baby girl this week.  Pam and I are going up to Seattle to visit them and have an early informal Christmas celebration, since we don't have any control over when Pam will end up in the hospital. 

"That's Better"

Aubrey Sky Henderson joins their first daughter Haile in their family.  I am very proud of both Ben and Andrea.  Without going into details, both of them had a lot of problems as teenagers.  They met in a boarding school for troubled teens and ran away together from the school.

In spite of the odds against this kind of start in the transition to adulthood, they are meeting the struggle.  They are responsible, loving parents and they are an inspiration to me. 

They still have a tough road ahead of them, because they are so young, but they are meeting the challenge so far.  Ben took a picture of Aubrey getting her first bath.

Next Steps

I am sure we will hear more very soon about the appeal for the stem cell transplant and Dr. Holtan will let us know immediately as soon as more is known. I will update everyone with the latest in this space.

 

Thanks again for all of your support, prayers and well wishes.

 

Jerry

One of a Kind

We just returned from an appointment with Dr. Shernan Holtan at OHSU and got some exciting news.  You all know Pam is one of a kind... we now have scientific proof ....

Bad News May Be Good News

To review:

• Two months ago, we learned that Pam's brothers, Mike and Mark were not suitable donors, even though each of them had a 50/50 chance.
• So, we have moved onto step 2: finding an unrelated donor from the bone marrow donor registry.  A month ago, at our last visit with Dr. Holtan, we found out there were 60 potential matches out of the 20+ million people in the bone marrow registry, and that chances were very good that Pam would find a suitable match.
• Today we found out that none of the 60 potential donors was suitable.

So, it turns out that 20 million people; including brothers Mark and Mike, not a suitable match with Pam.  She is one in 20 Million.

How Can This be Good News?

Since Pam can't find a suitable unrelated donor, she is eligible for a stem cell transplant from umbilical cord blood AND, the great news is that 2 suitable units of blood have been identified.

There are some disadvatages to the umbilical cord blood:  there is a small volume of harvestable cells and it takes longer for the immature stem cells to become rough and ready germ fighting machines.  So, cord blood transplant patients are generally in the hospital longer and have to take safeguards against infections even longer than other stem cell transplant patients.



Ready for Tapalaya!

The big advantage is that there is less Graft vs Host Disease (rejection) than there would be with an adult stem cell transplant.  Graft vs Host can be a very chronic condition requiring medication for many years, so having less Graft vs Host is a very good thing.

Also, this means that we can get on with the process right away AND she will probably not need to have another round of consolidation chemo.  We are expecting to get going before Christmas.

We are going out for dinner and music with friends Mort and Tina tonight at a New Orleans style joint we like called Tapalaya, complete with gumbo, jumbalaya, and beignets.  It looks like we have something to celebrate!

Giving Thanks Outside the Hospital

Whiteboard in Hospital
Happy Thanksgiving!!!

Pam's ANC improved dramatically, so she was discharged from the hospital this morning.  Four days seems like a long time.

As always, we are very thankful for the wonderful care she has received.  It is very comforting to know that she has access to world class care so close to our home.  We are very lucky.

Since Pam is still neutropenic, and can't be around a bunch of people and their germs, I am going to go to Thanksgiving at Don and Bonnie's.  I guess I will be eating for two.

Turkey in the Hospital

Pam feels OK, but Dr. Weinstein does not want to discharge her until her white blood count (especially her ANC), puts her out of the danger zone for infections. So, it looks like we will likely be spending Thanksgiving in the hospital.  I am sure it will be kind of nice in an antiseptic sort of way. 



Find Three Turkeys in the Picture

The nursing staff at Good Sam continues to be wonderful:  attentive, kind, and, most importantly, they make a sincere effort to laugh at my jokes.

Pam and I are both very thankful for her great care and for the support, kind thoughts, and prayers of all of our friends and family.

Happy Thanksgiving!


Deja Vu a Vu a Vu

Back in the Hospital

A not-so-funny thing happened on the way to get a blood transfusion this morning.  Pam developed a fever, headache, and swollen neck glands, so she is back in the hospital again.  As I write this, she is going through the now familiar process of getting admitted:  history, chest x-ray, cultures of blood and urine, and IV anti-biotics.

The Routine

This is getting to be so routine that Pam has a hospital bag packed and ready to go at all times.  We have a list of her current medications.  The admitting doctor was suitably impressed that we have everything in order.

Next...

She will be in the hospital for at least a couple of days. Hopefully, we can get the latest infection knocked down soon.  I am thinking we will need to stay away from people for a while longer, so we shall see about Thanksgiving.