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?