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.