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