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.

Big Words and Tchotchkes

Some Big Words

Pam is feeling a little run down, as expected, since her last round of chemo ended last week.  She has anemia and has thrombocytopenia.  How are those for big words?  It means that she is low on red blood cells and on platelets.

Platelets are the cells that are responsible for blood clotting, so, naturally it is dangerous for them to get too low. A person with thrombocytopenia could bleed uncontrollably.  So, we are going into the hospital today for a unit of platelets. (They look like butterscotch pudding.)

Red blood cells carry the oxygen in our blood stream.  When you become anemic, of course, you begin to get very fatigued.  We are going into the hospital on Sunday to get "topped off" on red blood cells.  (They look like, uhhh ... blood.)

Pam calls this "going to Jiffy Lube to get my fluids topped off", and it is all expected as part of the chemotherapy. 

In the week to come, her white blood cell count will begin dropping off and she will become neutropenic, so she will be prone to infection.  She is on some prophylactic antibiotics now, and we will watch her closely for signs of infection. We have learned to always have a thermometer close by and I will take her to the hospital immediately if she starts getting a fever.

Out with the Tchotchkes

More tchotchkes = more places for dirt to hide, so we are storing non-essential knick knacks, brick-a-brack, souveniers, treasures, keepsakes, and other assorted cute things that Pam loves as the first step in making sure that everything is easy to clean.  (I am attempting to stifle a cheer here.)

When she is in the hospital for her bone marrow transplant, I will get the condo super clean because she will be neutropenic for quite some time after being discharged.

More adventures to come.

Numbers Game

Friends and Family....

We had some discouraging news today.  Dr. Holtan at OHSU told us that Pam's brothers, Mark and Mike, are not a match for the bone marrow transplant.  Each of them had a 50% chance of being a match, but this is a case where 50 + 50 does not equal 100.

So, Pam will have to get her transplant from someone in the national bone marrow registry.  Dr. Holtan told us that out of 20 Million people in the registry, 60 of them are potential matches with Pam and chances are very good that at least one of them will be an excellent match for Pam.

This whole process of finding a willing and appropriate donor from the 60 potential matches, then collecting the donated stem cells is going to take some time.  Since Pam can only go about 5 weeks without chemotherapy, she will, more than likely, have at least one more round of chemo and possibly two more rounds before she can finally get the transplant.

So, wild guess, I don't believe we are going to get the transplant done before the end of the year.  BUT, good news, I am wrong all of the time. Ask anybody. I hope like hell that my streak continues.

Stem Cells and Things That Go Bump in the Night

Last Round of Outpatient Chemo?

There hasn't been a lot to report since my last post. Pam has just finished what we hope will prove to be her last round of chemotherapy before she goes into OHSU for the bone marrow transplant.  She has tolerated the chemo just fine so far.  She went through the same process as the last round: chemo at the clinic Monday, Wednesday, and Friday followed by application of a pump after each session, which gave her another dose of chemo overnight each night.

She will start feeling the effects soon.  She will be fatigued from anemia and prone to infection from neutropenia.  She will need some blood and platelet transfusions.  Hopefully, we can get through this round with no infections or hospital stays.



Glamming Up Before the Party

Other Important News

Halloween

We went to Halloween party at some friends and got the grand prize for best costume. Pam was wearing an outrageous wig, but she kind of somehow pulls it off.



What a Handsome Couple!

My TV

 Got our new TV from Amazon.  Worked right out of the box.  It is awesome.  What a relief!!  I can sleep at night now and my stomach is no longer tied in knots.

 

Getting Ready for the Transplant

So far, everything is unfolding as we were told:  Pam had a couple of prelminary blood tests, her brothers Mark and Mike received a kit to take a mouth swab for DNA testing, those kits have been returned, and we should know the results shortly.  If either Mike or Mark prove to be a good match, great!  If not, we may be to rely on the bone marrow registry for the donor stem cells.

OHSU on Monday

We are going in for our second appointment with Dr. Holtan at OHSU tomorrow.  We may even have the results of the DNA tests by then.  Regardless of the source of the stem cells, Pam will be getting some more tests done, and we will be going to a class for bone marrow transplant patients before she is admitted to OHSU.  I am sure we will know a lot more about the details and get a clearer picture of the timing of all of this when we visit Dr. Holtan.  I am still guessing Pam will get the transplant sometime in December.  We shall see.

More adventures to come.  I'll post another update after our appointment with Dr. Holtan tomorrow.

Groshongs PICCs and Bikes

Since my last post on Tuesday, there isn't much to report.  Most importantly, my replacement TV has not arrived.  I will be looking into that this afternoon.

Old Catheter Out/New Catheter In

Since the Groshong Catheter had to be removed, a new PICC line will be insterted Friday, Oct. 26th, at Good Sam as an outpatient in preparation for the next round of chemo. The PICC line will be removed and a new Groshong inserted before the stem cell transplant. At least that is the current plan.   Right now, Pam has no lines or tubes inserted, which has been a nice respite.

You may recall that PICC lines are inserted in the arm and snaked up to the heart, Groshong catheters are inserted just below the collar bone.

Last Round of Outpatient Chemo?

She is now scheduled for her (hopefully) last round of outpatient chemo the week of Oct 29.  She will get chemo at the clinic on Monday, Wednesday and Friday.  After each treatment, she will be fitted with a pump that will be programmed to give her another chemo treatment overnight at home. She returns the pump to the clinic on Tuesday, Thursday, and Saturday.

Prep for Transplant

We are thinking through some of the logistics with the transplant and the after care.  As I said earlier, we are very lucky that we live so close to OHSU and Good Sam and that Pam's family (aka the Aloha Mafia) live closeby.

My Goal

Funny how my mind works sometimes.  I am fixated on riding my bike up to the hospital at OHSU when Pam is in there for the bone marrow transplant.  If you are not familiar with the geography, OHSU is on a good sized hill.  I am wasting time right now, instead of doing productive work, so I made a map.

When we first moved our office at Clinicient from central downtown to south downtown near Portland State, it was further away from our condo and more uphill for me in the morning.  I was pretty gassed for the first few weeks after the move, but it is much easier for me now. Google says I should be able to make the bike trip in about 12 minutes, and I think I am beating that most of the time. 

I can see the OHSU campus on the top of the hill just south of our office on SW 5th and Market.  The hill from our office near PSU to OHSU is much steeper, but I want to bike up there instead of using the fancy tram from the south waterfront. Google says the trip to OHSU should take 31 minutes... we'll see. Should be fun.

Out again!

Another whirlwind of activity.  Pam's Groshong catheter was the source of her infection.  It was removed yesterday.  Out of the hospital today.

All of the nurses on the oncology ward at Good Sam always seem sad to see her go...

A lot of them say something like "Now don't come back unless you want to visit."...then give her a hug. It is very touching.

TV hasn't arrived.

So it goes.

Mystery Solved!

The source of Pam's recurrent infections as her Groshong Catheter, so it was removed in the Interventional Radiology department here at the hospital.  They have also been able to type the infection to see which antibiotics will be most effective.

She will be in the hospital a couple more days on IV antibiotics. She will, ultimately, have another Groshong Catheter placed, because she has so many blood draws and transfusions in her future.

More importantly, TV has not arrived.

Newsworthy News

Well, Pam ended up in the hospital after all. We got a call from the hospital today, and one of her blood samples turned up positive for a staph infection.  So, she is hospitalized for IV antibiotics and they will continue to try to figure out the source of these infections.

TV Update:  it hasn't arrived.

No News Is Sometimes Just No News

Since my last post on Oct. 4th when Pam got out of the hospital last, here is what has happened:

Oct. 5: Nothing
Oct. 6: Nothing
Oct. 7: Nothing... Oh, ordered a new TV from Amazon
Oct. 8: Nothing
Oct. 9: TV delivered
Oct. 10: TV was defective. Returned TV.
Oct. 11: Nothing
Oct. 12: Went to Manzanita for the weekend

So, as you can see, not much to report, so no need for a recent blog update. Instead of 8 boring blogs, I am packing all of the recent excitement into this one action packed episode. 

Yesterday, Pam had a headache, chills and felt generally crappy while we were playing cards in Manzanita. By this morning, her temperature spiked at over 101, so we loaded up the car and came back to Portland to go to the Good Sam ER.  By the time we made it to the ER, her fever was gone, but her blood pressure was very low.  They started IV fluids and the usual workup: chest xray, blood draw, urine analysis, etc. and consulted with Pam's oncologists. Since her white count is OK at the moment, she is not any more prone to infection than anyone else, so they decided to that there was no need for IV antibiotics, and, after 4+ hours in the ER, we made it home.

We are waiting for the whole "process" to get her stem cell transplant approved.  Between now and then, she will have at least one more round of chemo as an outpatient.  Chemo is even more exciting than getting a new TV.

But, coming attraction:  I will put out a special bulletin when the replacement TV finally does arrive and let everyone know if it works this time.  My peeps need to know these things.

Out of the Hospital

Pam's ANC (Active Neutrophil Count) went from 2.8 to 6 in one day and her temperature has stayed normal.  So, although her immune system is still pretty weak, it is good enough to get her out of the hospital.  Dr. Weinstein released her this afternoon.

I suddenly feel very tired and have started yawning incessantly.  I think it is because we are coming down from lots of excitement this week: appointment at OHSU for the bone marrow transplant, Pam getting suddenly sick, then in and out of the hospital. 

I am going to relax a bit, read my book, have a beer, then watch the American League wildcard game between the Orioles and the hated Texas Rangers.

This is Boring!

Pam is feeling fine:  no nausea, no fatigue, and no fever, but she has a severe case of boredom. She needs to stay in the hospital until her "germ fighting" white cell (ANC) count increases from 2.8 to 5, which should happen in the next few days, maybe as soon as Friday.

The daunting challenges that she will be facing over the next year or so are weighing heavily on her and there isn't a heck of a lot to do in the hospital.  In some ways, it is worse to stay there when you feel OK than when you are sick.

Make That "Bullet Resistant"

We had our first bump in the road since Pam was released from the hospital.  So, turns out Pam is bullet resistant, not bullet proof.

"Funny, I don't feel bullet proof"

Pam saw Dr. Holtan and Dr. Huang at OHSU yesterday morning. She hasn't been feeling well for a few days:  she has had a mild fever, mouth and gum soreness, and swollen neck glands, so she saw her normal oncologist, Dr. Weinstein, yesterday afternoon. Her blood counts do not show anything unexpected and Dr. Weinstein looked at a blood smear under a microscope himself, (something not routinely done anymore with all of the high tech analysis equipment) and there is no sign of leukemia cells. Dr. Weinstein told us to go to the ER if the fever went over 100.  And, as if on cue, overnight last night, she developed a fever of over 102 degrees.  So off to Good Sam we went at about 430 this morning. After spending 4 hours in ER, she was finally admitted for treatment with IV antibiotics.

All of this means that Pam is still in remission, but possibly has an infection of some sort. They are doing cultures of her blood and urine to see if they can find the bug.  Pam is resting comfortably right now, in fact, she will fall asleep in mid-sentence, so she is resting and I am catching up on a little work.  I have a meeting with a customer at 12:30 today, so I talked the nurses into letting me use an empty patient room.

More adventures to come.

The Big Day

Big Day

The big day arrived. Pam had her first appointment to meet with Dr. Holtan, who will be heading up the team for Pam's bone marrow transplant at OHSU.  Dr. Holtan is delightful. She is very young looking, has a great sense of humor (I can tell  because she laughed at my jokes) and, obviously, VERY sharp.  Being on the cutting edge of bone marrow transplantation is her passion. She told us about her background, which includes a residency at Mayo Clinic.  She explained the transplant process and spoke very frankly, but compassionately, about the risks. 

Long story short, Pam really doesn't have an option other than doing the allogeneic bone marrow transplant.  The odds of a cure with chemotherapy alone are dismal since Pam has a"very special" genetic abnormality called FLT3.  Dr. Holtan nodded in the affirmative when I said the decision to do a bone marrow transplant is a no-brainer.

Requirements

Dr. Holtan outlined some requirements for the transplant from her brothers.  It only made me reflect some more on how lucky we are:

• Her brothers will need to be willing donors:  I told her I could have Mark in her office in 10 minutes (he was plumbing one of the buildings on the OHSU campus).  Mike would take longer, but he could be there within an hour.  Turns out that they don't need to be quite that responsive.
• We need to stay within a 20 mile radius of OHSU:  We live 3.1 miles/11 minutes away. I work 1.7 miles away and Google Maps says I could bike up to OHSU from my office in 21 minutes. (I think Google Maps is being very optimistic.  There is a big hill.)
• Pam will need a constant caregiver after hospitalization:  I will have to fight off her family (aka, the Aloha Mafia) and friends to keep them from overrunning the place when we need them.  Not a problem.

Next Steps

Tissue Typing and Donation from Mike or Mark

Mike and Mark will receive a call from the clinic to let them know they will be receiving a kit in the mail so they can submit an oral swab for analysis.  Assuming one of them is a good match, they will have some additional blood tests.  The process for donating stem cells is pretty easy and it is about a 4 hour process.  The donor's blood is processed in a machine to remove the stem cells and the rest of the blood is recycled right back to them.  They usually take more than they need for the stem cell transplant and hold some in reserve.

One of Two More Rounds of Chemo

While we are waiting for the transplant, Pam will go through at least one more round of chemo under Dr. Weinstein's direction.

Stem Cell Transplant

The transplant will be done at OHSU.  Pam will be in the hospital for about a month. (Don't worry, I am confident that they will have maple bars in some cafeteria nearby.)  It will probably happen around the latter part of November to the first part of December.

After the Hospital

Pam will need to have a caregiver 24 hours a day for 100 days after discharge from the hospital.  The main reason is that she will need to make sure that someone can make sure she takes her medication on a strict schedule and take her to the hospital, if needed, on a moment's notice.

After all of that...

we may elope.  Who knows?

Bullet Proof

"Bullet Proof"

Pam's recovery from the second round of chemo could not have gone better so far.  Dr. Weinstein said that he and Dr. Segal were debating about whether or not to let Pam do the chemo as an outpatient instead of sticking her back in the hospital.   Dr. Weinstein was gloating just a little, because he is so pleased... he said to Pam  "You are bullet proof.  Dr. Segal was worried about letting you do this as an outpatient, but he is a little compulsive. I kept telling him it would be OK."

Blood counts are now beginning to recover.  Platetlets and white cell counts are increasing rapidly, red cells will be following shortly.  As her white count improves, she will be less prone to infection; as the platelets continue to improve, she will be less prone to uncontrolled bleeding; and as the red count improves, she will begin to have more energy and endurance. She hasn't felt very ill at all during all of this, so, again, we are very lucky.

Remission vs. Cure

I caused a bit of a stir with some of the recent blog articles.  I think I gave some readers the impression that Pam is cured.  Not yet.  Her leukemia is being kept in remission with chemotherapy.  She is in remission because there are no detectable cancer cells at the moment.  I don't think I made that point clearly in earlier posts.  The first paragraph of ths article in wikipedia explains the difference.  Remission vs. Cure

Unfortunately, her genetic tests have shown that the leukemia will come back without a bone marrow transplant. She will be seen by leukemia specialists at OHSU for an allogeneic bone marrow transplant.

Stem Cell Transplants

I am sure we will learn a lot more about this very soon, but here is my current understanding of how bone marrow stem cells can be matched and donated:

• Pam and her brothers, Mike and Mark, come from the same pool of genes, courtesy of Don and Bonne.
• Mike and Mark can donate to Pam directly, and it is the best chance of a good match and a cure.
• If Mike and Mark turn out to be a poor match, she will have to use matched stem cells from a bone marrow bank and chances of a cure are slightly worse. 
• There has also been a lot of confusion around donation of stem cells from baby Austin's umbilical cord blood.  Here is what I understand about that:
• Alyssa and Jason can't donate Austin's cord blood cells directly to Pam.
• They can "bank" cord blood cells for the future use of the immediate family. (Austin, Jason or Alyssa)
• In any event, the baby Austin stem cells are not necessarily a great match:  
• Half of the genetic makeup of Baby Austin comes from Jason
• Half of Austin's genetic makeup comes from Alyssa
• Only half of Allysa's genetic makeup comes from Pam.

This is just my understanding of the situation right now, and I could be mistaken. I don't even play a doctor on TV. I will correct the above if I find out it isn't accurate.

 

So, brothers Mike and Mark are going to get tested soon as potential bone marrow donors, and we will be hoping that one of them is a good match.

Make sense, sort of?

OHSU on Monday

Pam has her first appointment for an orientation at the Hematology Clinic at OHSU on Monday with  Dr. Shernan Holtan.  I am sure we will learn a lot more about next steps on Monday and I will share what we learn here.

With my keen skills of observation, I can tell Pam is a little anxious about Monday.  She is very distractable (yes, more than normal) and has suddenly taken to organizing tupperware lids. We all have our own ways of coping with stress:  I get irritable and cranky; she organizes.

I'll write another article after the appointment on Monday. Thanks again to everyone.

Topping Off the Fluids

Last Friday turned out "interesting".  As expected, Pam's red blood, white blood, and platelet counts have all decreased since the second round of chemo ended on September 7th.  She was scheduled to receive a unit of platelets this past Friday.  After getting the platelet transfusion at the hospital, we went to the outpatient clinic for another check up.  Another blood count was done at the clinic, and her red count was very low, so we were sent right back to the hospital so she could get 2 units of red cells. As usual, the staff at the Compass Oncology and at Good Sam "got 'er done", and Pam had all of her fluid levels topped off by the end of the day.



Don wearing one of Pam's snazzy hats

On Friday evening, we went to Manzanita with brother Mark and parents Don and Bonnie, and had a nice relaxing weekend. 

Bonnie giving Pam a trim

Her white count is now very low, so she is now in the "danger zone", she can get an infection very easily, so we have to be careful.  Her energy level is OK, although she has noticed a little shortness of breath today, so I'm assuming she will need another unit of red cells pretty soon.

She is scheduled for her first appointment at OHSU in prepraration for the stem cell transplant on Monday, October 1.  As part of the procedure, they will completely eradicate her white blood cells, then transfer the donor cells to her.  There is a rejection risk, as there would be with any transplant, but the transplant offers her the best chance of an ultimate cure, so it is a bit of a no brainer.

So it goes...

A Plan, Finally

I just returned from a business trip to San Diego.  While I was away, Pam had an appointment with Dr. Segal. The final genetic test results are finally done, and Pam will definitely need an allogeneic bone marrow transplant to achieve a cure.  The bone marrow would most likely come from one of her brothers, assuming they are a good match. There is about a 60% cure rate for for a bone marrow transplant patient with a good donor match.

So, going back to Dr. Weinstein's original drawing of the treatment plan, we are at the least desirable of the three treatment paths he outlined when Pam was first hospitalized.  The bone marrow procedures will be done at OHSU, and she will get her first consultation with the team there within a couple of weeks.

In the meantime, her blood counts are decreasing rapidly from the last round of chemo, as would be expected.  She is becoming more fatigued and her white count is low enough that we have to be super careful to keep her away from anyone who is ill.  Her platelet count has gotten especially low, so she is going to get a unit of platelets at Good Sam today.  Other than the fatigue, she is feeling fine, and has taken the bad news on the genetic tests in stride.

End of Round 2

Chemo

The first week of chemo as an outpatient has been, thankfully, pretty uneventful.

Pam had chemo treatments with Cytarabine (one of the two chemo agents she had in the hospital) on Monday, Wednesday, and Friday at the clinic.  Following each treatment, she was fitted with a small pump that gives her another dose of chemo overnight, complete with whirring and clicking noises. When the pump is done, it wakes you up with a series of beeps.  I jumped out of bed every time.  (Pam doesn't jump out of bed, it is against her general principles; or policy; or religion; or something.)

Good news is that she hasn't had any nausea since restarting chemo this week.  The mysterious rash in her groin is returning, so we will need to get that checked out.

Treatment Plan

The final genetic test results finally came back.  They were "mixed", meaning it is likely that Pam will need treatment beyond just chemo, either an Autologous (stem cells from her own marrow) or Allogeneic (stem cells from someone else) transplant.  We will be going up to OHSU for a consultation fairly soon.

See Dr. Weinstein's original treatment plan drawing.

No chemo next week, but she will need to go in for three visits in the coming week to have her blood counts and chem panel monitored to make sure her liver is OK.  She will more than likely need some transfusions soon.  For right now, her white blood count is good, so we can mix and mingle with all of the germs out there with no risk.

Crosby, Still and Nash are OLD....

Stephen Stills

We had tickets to Crosby, Stills and Nash for this past Wednesday. When I bought the tickets, I forgot that I had to go to Salem that evening for a work commitment.  So, Pam took her brother Mark.  Reports are that it was a great concert, that David Crosby has lost a lot of weight and looks like an old grand dad, and Steven Stills looks like he pulls green chain at a lumber mill.




David Crosby

 

 

 

 

 

 

... but, so is The News

We have decided that we should not try to plan things much ahead of time, since we really will not know how Pam is feeling from one day to the next.  So, yesterday we bought tickets to Huey Lewis and the News at the Maryhill Winery for today. Bought them from some guy on Craigslist. And, after some effort, we found a motel room not far away in Rufus (yes, there is a town named Rufus) so we don't have to drive home after the concert. Should be fun.

Round 2

Pam started on Round 2 of chemo today as an outpatient.  She will have infusions Monday, Wednesday, and Friday this week in the oncology clinic.  After each infusion, she will be fitted with a pump and get another dose of chemo overnight at home.

Right now, she is feeling fine.  She may have some nausea and will certainly need blood transfusions, but she won't be nearly as sick as she was during the first round.

After Pam got out of the clinic today, we met with friends Steve and Debbie Wilkins and Brian and Tina West at the Pyramid Brewery in Northwest Portland.  Had a great time.

Back from Gotham

New York

My Buddy, Creta
at the US Open

I returned yesterday from a whirlwind business trip to New York, working with Metro Sports Med in their main office in a nice area in Brooklyn called Park Slope.  My old friend (scratch that... and replace with "my friend I have known for a long time"), Creta Chandler, is now the COO for the company.  It was great seeing her. She has adapted to life in New York well, she looks great, and is generally kicking butt and taking names in her new position.

View from our seats at Arthur Ashe Court
US Tennis Center

I didn't have much time to really play tourist, but the owner of Metro Sports, Dr. Dave Menche, has great tickets to the US Open Tennis Tournament, and invited Creta and I to go on Thursday evening.  We took a train to Manhattan and transferred to the "7 Train" to Flushing.  The tennis center is right by Mets stadium and it is an awesome venue.  We watched both Roger Federer and Venus Williams play opponents I have never heard of at Arthur Ashe court.  Quite an experience, but I was so tired that night, we had to leave before the Venus Williams match was over.




Caprese Salad Appetizer
Italian Restaurant

Food

There are nice small restaurants with good food everywhere you turn in New York, and it is not necessarily expensive. We ate lunch at a couple of neighborhood restaurants in between the training sessions I was teaching:

Grilled Chicken and Flatbread
Turkish Restaurant










Back Home

Sporty
GLH

Before Pam got sick, I was going to take her to New York with me for her birthday, and we would have stayed a few extra days seeing the sights. We will have to do that later.

Pam had her Groshong Catheter placed at the hospital while I was in New York.  Her son Nate took her to the hospital and helped her out.

I didn't sleep much while I was over there, so I was pretty exhuasted last evening after Pam picked me up at the airport. So, we walked to a local restaurant for a nice dinner. I have been talking about what I call the "Goofy Little Hat" trend in fashion.  (I think they look Goofy on men, sorry, see Howie Mandel.)

 In fact, I have abbreviated it to GLH.  Well, now Pam has a whole collection of them, and she looks cute in them.  She wore one of her new GLHs to dinner.




Grilled Octopus
at Jamison in Portland

More Food

I don't mean to turn this into a food blog, but highly recommend the Jamison.  It is only half a block from our place.  Yum.

Austin

While I was away, Pam stayed with Alyssa and helping out with baby Austin.  She was in heaven... she really enjoyed being able to spend some quiet time with Alyssa and the baby.

The Beach

Today, we are heading to Manzanita and will come back on Tuesday.  Should be nice.

Back to Treatment

Still no final word on the treatment plan, waiting for more genetic tests on Pam's original blood sample to be analyzed.  She will start chemo again on September 10th as an outpatient on a Monday, Wednesday, Friday schedule to keep the leukemia in remission in the meantime.

Thanks!

Thanks to Creta, Dr. Menche, and all of her team at Metro Sports Med. And a special thanks to Nate for helping out in my absence.  Much appreciated!

Hats R Us

Hats Galore

Had dinner with our good friends Mort and Tina and had a GREAT time. Nice to do normal things again. Tina had a vintage hat collection for Pam to check out.

No Hospital Food

Dinner was great!!  Planked salmon, greek salad, blackberry pie, and corn on the cob.

 Cheers!

Tina and I celebrating. 

Pam isn't drinking alcohol while her liver recovers from chemo, so she missed a very nice wine.

To Come

Appointment with Dr. Weinstein tomorrow to check blood levels and discuss next phase of treatment.  I am leaving for New York on Wednesday and back on Saturday.  Pam's Mom, Bonnie, will take her to the hospital to have her Groshong Catheter placed for future chemo.

Baby Day

 Baby!

 Little Austin was finally born last night. He is a beautiful baby boy. Alyssa had a hard time and was in labor for over 24 hours, but everything turned out great. Both of us are thrilled, but Pam is really way beyond thrilled.

Here are some more pictures, not all the greatest quality because the hospital room was dim and I didn't want to use a flash:  Baby Austin Pics

 

Whew!

It has been a whirlwind of activity for the past couple of days. Alyssa started having labor pains Wednesday morning and went to the hospital late that evening. Naturally, we beat Jason and Alyssa to the hospital. While Alyssa, Jason and Austin did their thing, we waited... and waited until about 3 AM Thursday morning, then went home and caught a little sleep. I had a 7 AM phone meeting that morning, then went to the office and Pam went back to the hospital about 10 AM. Pam had a consultation with another oncologist, Dr. Segal, at 4 PM (more on that below), then we went back to the hospital for more waiting, and, finally, Austin decided to join the outside world about 9 PM last night.

Treatment Plan Continued

Dr. Segal turned out to be congenial and empathetic. Introduced himself as "Jerry Segal", which I appreciate.* When reviewing Pam's history, he commented "you were really sick!"... seems obvious, of course, but in an odd way it felt like an accomplishment when he said that.  Pam was so critically ill, and, for now, she is out of the woods.

He was very thorough in reviewing Pam's history, and concluded that he would not recommend an Allogeneic Transplant.  That is generally more successful with younger patients.  Based on the genetic testing that will be forthcoming, he and Dr. Weinstein will likely recommend either more Chemo or more Chemo, then an Autologous transplant.

Pam's liver is still recovering from Round 1, and they will not start the second round of chemo until the liver numbers are normal.

We have an appointment with Dr. Weinstein later this morning and should know the plan very soon.

Melt Down

After getting back from the hospital last night, Pam melted down and had a good cry. Partly because she was very tired, partly because she was thinking about Alyssa's pain during the delivery, partly because the timing sucks:

She is, of course, simultaneously happy about baby Austin but sad that she has been so sick, especially right now of all times in her life.

For as long as I have known Pam, she has dreamed about helping Jason and Alyssa and the baby during this time. In fact, she mentioned it to me on our first date (4 years ago?).  As it turned out, she has been so sick that she hasn't been able to help much at all.

*I know this is petty, but I can't help it:  I have a problem with physicians who expect to be addressed as "Dr.", but feel perfectly OK addressing me by my first name. "Hi Jerry, my name is Dr. Smith" makes me grit my teeth, just a little. 

 

It should be either, "Hi Mr. Henderson, I am Dr. Smith", or, "Nice to meet you Jerry, I am John Smith". 

 

I am not proud of myself for letting such a petty thing bother me, but it does.  There, I said it.

Remission!

Great news

Pam is in remission.  Her blood counts are all normal and her bone marrow biopsy came back looking great.

This doesn't mean her treatment is over, far from it, but it does mean we can to onto the next phase. 

Here is how Dr. Weinstein drew it out:

We are done with the Induction Chemo now that Pam is in remission.  Remission is not the same as a cure.  To cure the leukemia, there are 3 options:

• More Chemo for at least 3 more sessions
• Autologous Stem Cell Transplant:  re injection of her own bone marrow cells
• Allogeneic Stem Cell Transplant:  replacement of Pam's bone marrow with someone else's.  The marrow could come from a close relative, or could come from a bone marrow bank.  Obviously, the better match the more likely she would have a successful outcome.

All 3 options involve more chemo.  The Allogeneic Transplant has the best chance of success in the long run, but it also requires treatment for a longer time.  She has an appointment with another oncologist who is the bone marrow transplant expert this coming Thursday to discuss our options.

So, we are not even close to being out of the woods, but at least we have a compass.

Pam is not feeling red-hot, but I expect she will continue to gain strength over the next few days.  Her hair is falling out pretty steadily, but she doesn't look ill.  She is not eating much and she is losing weight with the "toughest diet program ever!"

On to much more trivial matters:  I cancelled a cruise we had planned for November.  Things are just too unpredictable right now.  Luckily, we are going to get a full refund. I am getting back into the swing of things a bit more at work, going into the office every day now.  I have periods of time where I am super productive, others where I can't concentrate at all. I have business trips scheduled to New York and San Diego coming up soon. I had planned on taking Pam to New York with me for her birthday. We are both disappointed about that.  I will be working with our good friend, Creta, in New York, and I was going to take a couple of extra days, but it just won't work out.

Long Awaited Biopsy

Went to the hospital early this morning and the bone marrow biopsy was finally completed under CT guidance.  Easy peasy.  I tried to catch up on some work while waiting in the hospital cafeteria, but the procedure was so quick, I didn't have much of a chance to get anything done. Results on Monday.

Jason's birthday party at the Lucky Lab this evening.

Pam and I are going to sneak away for the weekend and relax a bit. No IVs, no procedures, no hospitals and no appointments. Weeeee!

Why Start Now?

So, another interesting day... at least to me.

Most importantly, Pam is feeling pretty good.  It is still amazing that a person's condition can change this quickly. She was suffering tremendously last week, feeling pretty close to normal this week.  In fact, I think her leukemia may have cured her snoring... she is sleeping soundly and not snoring at all.  Amazing.

She had he first outpatient appointment today to get a bone marrow biopsy.  Since having a biopsy wasn't trying enough, she thought it would be a marvelous idea to go to the DMV to get her driver's license renewed today before her appointment.  She explained to the nice folks at the DMV that she wanted her picture taken with her hat on, because she is self conscious about losing her hair, and, surprisingly, they let her do it.

To prepare for the bone marrow biopsy Dr. Weinstein gave her a prescription for anxiety. She needed it.  She was little Miss Chatty Cathy before we got to the clinic. I have never heard her talk so much about nothing... I finally asked her to take a few deep breaths and take one of those magic pills.  Immediately. I was tempted to ask her to take two pills, but that probably wouldn't have been prudent.

When we arrived at the clinic, Dr. Weinstein was his usual gentle, affable self.  He explained what he was going to do, made sure we both understood, and, after he made sure I wasn't going to feint or something, he allowed me to watch.

The procedure involves numbing a spot over the backside of the pelvic brim, then inserting a large bore needle in to the pelvis to retrieve some bone marrow.  It didn't go well.  In fact, it didn't go. Pam's iliac crest was so tough he couldn't get the needle through it.  He was literally sweating trying to break through and he could not.  His nurse had never seen this happen before.  All Pam got for it was a sore bum.

So, we now have to go to the hospital early tomorrow morning and have the procedure done under guided CT. It is important to get the test done right away.

I told Pam that we shouldn't expect this to go as expected, nothing else has so far.

Looking Sporty

Pam had her first night at home and slept well.  Prior to last night, had not slept well for over a month.  She was very sick before she was finally diagnosed, and no one sleeps well in  a hospital, even if they feel OK.

Sis in law Sandra took her to her first outpatient appointment today and she was very pleased that Dr. Morich was there to greet her.  He was one of our favorite residents in the hospital, and Pam didn't expect to see him again as an outpatient.

She will be having her bone marrow biopsy (finally) tomorrow, and after we get the results, they will decide on the next course of treatment.

New Haircut

My favorite hat

While I was at work today, she decided to cut her hair very short.  It is falling out very rapidly now, so it will make less of a mess.

She tried a few hats on for size.  She has a white Mariner's cap that makes her look sporty instead of sick.

Our little condo is cluttered with all of the stuff that we brought from the hospital.

I have been surprised by well wishes from people that I haven't seen in years.  Very touching.