6-29-10

Status: 9.5/10.

Events:  Terry made his way up to Hopkins for a history and physical.  I slapped some steaks on the grill (good for his blood count and mine), and we had a nice family dinner together. 

Comments: Going up (I keep saying up because Baltimore is about 50 mi Northeast of Bethesda) to Hopkins for an ultrasound.  As part of the pre-transplant evaluation process, they routinely screen for colon and prostate cancer (I have no idea what the likelihood is that someone with leukemia also has occult colon or prostate cancer), but I’ll pick up some colon cancer screening tests to use at home, and get blood drawn for the ubiquitous PSA (prostate specific antigen) test, although its utility in screening for prostate cancer has come under increasing skepticism – just checking off the boxes.

Although I was going to drive there myself, Lisa would have none of it, so a cousin will be my chauffeur.  Just another kindness from so many.

 Love to all of you,

-Bruce

6-28-10

A friend brings us dinner, we get a wonderful card in the mail, a comment lifts our spirits – such appreciated support.

Status: 9.5/10. Team Dan (Bruce and Terry) got a lift up to Hopkins with good friend Laurie Singer for Terry’s evaluation.  My chance to be the patient advocate. 

Events:  Terry had the multi-tube blood drawing, EKG, and chest x-ray, and the bone marrow biopsy.  He did great!  What a champ, and what a great brother.  And nice just to spend time with him.

Comments: We’re moving ahead, and looking forward to a successful transplant.  I’ll have an ultrasound later this week, and a consultation with our attending physician.   

Love to you all,

-Bruce

6-25-10

Status: 9.5/10. Another evaluation day at Hopkins, but feeling rather good. 

Events:  The usual blood drawing for another battery of tests, a baseline history and physical from the physician assistant who’ll be following me in the hospital, and then on to a heart scan.  The purpose of the scan was to get an assessment of my heart’s pumping ability, which is measured as its “ejection fraction,” a measure of how much oxygen-carrying blood can be ejected into the circulation.  By comparing how much blood is in the heart’s main pumping chamber (left ventricle) before and after contraction they come up with a percentage of how much gets swished out.  

It’s accomplished with what’s called a MUGA (Multi Gated Acquisition) scan.  After taking a small vial of your blood, they mix it with a radioactive isotope (technetium-99m) and let it sit for about 30 minutes as the isotope is taken up into the blood cells.  Then they inject the now radioactive tracer back into you, and with a camera (really a digital Geiger counter) they can see the blood circulate throughout your body.  In this case, they focus in on the heart.  And by also attaching an EKG they can time when your heart contracts and grab the right series of snapshots.  They let me view the scan afterwards, and my ejection fraction was normal.  The scan gives about as much radiation as 500 chest x-rays, but with all the CT scans, fluoroscopy, and other x-rays I’ve had, I’m probably glowing at night now anyway. 

Comments: Terry, my donor brother, is coming in this weekend, he’ll have his own evaluation on Monday – they’re just as interested in his health as mine.  We hope you all have a good weekend with family and friends.  We’ll pop up again on Monday.  

Love,

-Bruce

6-24-10

Status: 9.5/10. A long day at Hopkins, but home for dinner with the kids. 

Events:  Early morning blood drawing with about a 15-tube extraction for a wide variety of basline tests, and then on to a rudimentary transplant class with one other couple.

The most interesting part of the day was the full CT scan using contrast material.  “Contrast” is an iodinated-solution injected into a vein.  Soft-tissue organs like the kidney and the liver don’t show up well on an x-ray–dependent CT scan (much better at demonstrating bones and other “hard” materials).  The injected iodine gives a blush to wherever blood is circulated, so organs show up.

The problem is the contrast can cause kidney shutdown and allergies.  I had no previous history of iodine allergy (shellfish and so on), yet I wanted to have plenty of fluids beforehand to flush and protect my kidneys.  I ate half a honeydew melon, drank liquid yogurt, a bottle of orange juice, and followed it up with 12 oz of water – I was floating.  But upon walking into the CT waiting area, I was handed two 15 oz glasses of cranberry-flavored water to down in 5 minutes.  Now I was drowning.

As they inject the contrast immediately before the scan, you’re told you would feel some “warmth,” typically starting in the neck and ears, spreading to your chest, perhaps elsewhere, and it would last just a minute.  The warmth is actually more like heat, not uncomfortable, but strange.  Stranger is that the heat started in my pelvis and stayed there – I have no idea what that means, but I decided to keep quiet about it.

 What I didn’t have to tell them, because they saw it as well, was that at the end of the CT, I sneezed.  Just once, but it was a sneeze.  They were most concerned.  Not that I might be spreading germs, but apparently it’s a sign of an allergic reaction, and they said more concerning than itching all over.  They observed me for a few minutes afterwards, nothing transpired, but now I have “contrast allergy” written in my chart.  I have no idea whether I’m allergic or not.

A quick lunch (to the health conscious, I had salad today), and then a chat with the social worker who serves the transplant unit.

Comments: Tomorrow, back again for more labs, a full history and physical, and a heart scan.  Hope they can tell that my heart is full from all the love and support I’ve received, it’s been critical to how well I’ve done so far.  Thank you. 

Love,

-Bruce

6-23-10

Comments on the blog are better than any medicine.

Status: 9.25/10. Had an LP today, and anytime you get stuck with a needle you just gotta deduct some points.

Events:  Today was the beginning of numerous evaluation tests to make sure I’m in good shape for a transplant; started off the morning with blood drawing (simply to reassure the folks in radiology that my platelets were high enough that they could safely perform a lumbar puncture).  Then off for a quick EKG, which is done in another corner of the hospital. The delightful technician in the heavily air-conditioned EKG suite asked me to remove my shirt, but immediately handed me a warmed gown.  It was a first –  comfortable, comforting, and confidence building.  Not only did I feel good, I thought, “These folks know what they’re doing.”  It takes so little to put a patient’s mind at ease (think of all the people who have no idea what’s in store when they’re sent for an EKG).

One of the many good things at Hopkins is that they show you your test results.  The tech handed me my EKG, and although most people would have no idea what the squiggles meant, I could quickly tell I had not had a recent heart attack, an electrical conduction problem, or an enlarged heart (that’s myocardial infarction, left bundle branch block, or left ventricular hypertrophy, in doctor talk).

Next up were pulmonary function tests.  As you go through a number of exercises, they measure your normal breathing volume, your total lung capacity, how much and how fast you can forcefully exhale, and a number of other sophisticated measurements that were beyond me.  For those familiar with the tests, they come accompanied by a technician who’s yelling, “More, more, more!  Keep going, keep going!  Hold it, hold it!”  I’d swear that each one of them in college was a coxswain on their rowing team.  All of my major measures were above those predicted for my age, weight, and height, so I’m starting off with a good heart and lungs.

Lisa and I grabbed a quick lunch (she specifically wanted me to relate that mine was California roll and chocolate layer cake and ice cream).  And then we traveled back to the outpatient clinic where I would rest after my upcoming LP, but for the sole purpose of getting a gurney to take down to radiology with us (if you don’t come with one, you don’t leave with one!).  We grabbed a blanket as well.

The LP was as usual, a radiology fellow doing the procedure, but a wait for the supervising (billing) physician.  I went over in a gentle way what made for a good LP (slow injection of the numbing lidocaine, let it sit awhile to take effect – otherwise what’s the point).  Lisa later laughed, and using a deep announcer’s voice, intoned, “Bruce Dan, changing medicine, one doctor at a time.”

And as usual, despite my hinting that I’d like a calm, quiet ride on the gurney back the outpatient area, the two assistants pushing it were gabbing loudly the whole way back about how much they liked/didn’t like their jobs.  They seemed totally unaware I was lying on the bed in between them.   Don’t know if I’m gonna be able to fix this one – seems like they missed something in kindergarten.

Comments: Tomorrow is another long day, back for an early 4-hour class on bone marrow transplantation, x-rays, CT scans, and a meeting with social worker.  Feels like the merry-go-round is starting to move pretty fast

My love to everyone,

-Bruce

6-22-10

Status: 9.5/10. A good night’s sleep and a day of running errands.  Lisa’s at work, the kids are doing their things, and life feels normal.  And you say to yourself, if I’m feeling this good why do I want to go through what’s coming up?  Well, it’s simply the only door out of the room.

 Events:  Back to Hopkins for the start of a long series of evaluation tests.  Tomorrow it’s an EKG, pulmonary function tests, and the dreaded LP under fluoroscopy with chemotherapy.  We’ll see what we have to do to get transported around in an efficient manner, eh!

Comments: One of the things we learned at Seattle is that they compared their transplants over time to see how outcomes have changed.  They looked at 1500 transplants done from 1993-1997 versus 1500 from 2003-2007.  They observed a remarkable betterment in outcome, but they couldn’t trace it to any one thing.  They believe it’s just a little incremental change here, a little one there.  Small things like the order in which they give medicines, better drugs for nausea, the ability to pre-medicate to prevent an expected side effect.  

There’s a wonderful line in the movie Star Trek IV: The Voyage Home (the one with the whales), when Capt. James Kirk and crew have to go back in time to save their present universe.  During their adventures, Ensign Chekov is critically injured and taken to a local hospital.  Kirk has to decide whether to risk aborting their mission to save Chekov or abandon him and save the future.  Dr. McCoy jumps in, “Jim, we can’t leave him in the hands of 20^th century medicine.” 

So, in a sense, I’m fortunate that I got sick in the 21^st century.  I’ve benefitted from all that has come before.  I’m looking forward to getting well this century, too.

Love,

-Bruce

6-21-10

Every day in the mail there are cards – just great support.  Especially for the journey we’re going through next.

Status: 9.5/10. Several folks have commented that my color looks better, and that I look pretty good.  That was confirmed today at Hopkins with my hematocrit being 35!  That’s the low end of normal.  The official report on my bone marrow says, “The findings do not suggest the presence of leukemia.”   That means a designation of “complete remission.”  The two most important things you want going for you as you enter a bone marrow transplant are a remission and a perfect sibling match, and my brother Terry’s is a perfect 10/10.

Events:  Received the schedule leading up to my re-entry into the hospital.  I’ll be at Hopkins a good deal between now and admission for tests, with transplant hospitalization now planned for July 7.

Comments: Lots to do over the next 2 weeks or so.  Terry comes up here for a medical evaluation, and then back again for the transplant.  Spoke to two friends who have had AML and bone marrow transplants, invaluable perspective as only they can give on what it’s like.  They are both doing well, and they are a great help beginning all this with optimism.  Believe that the right neuro-chemicals floating around are so much better than the wrong ones.  Started on an anti-depressant, which I will continue during the hospital stay to take a little edge off the stress.  Back at Hopkins on Wed, Thurs, and Fri for pre-admission tests, and we’ll keep you up to date.

Love to you,

-Bruce

6-19-10

Status: 9.0/10.  Back home from Seattle after a very early flight this morning.  A little tired from the time zone change and the long flight.

Events: Realized as I watched the United States pass beneath me that this would be my last flight for awhile.  Given what we saw of the crowded summer security lines, the folks who looked like they’ve never flown before, and the sardine-stuffed flights, that may be just all right.  Next up is a regular Hopkins outpatient visit Monday to check blood work.

Comments:   We’ll go to a Washington National game on Saturday, and I wanted to wish everyone a Happy Father’s Day.  I’m going to appreciate mine much more than I have before.  We’ll give everyone, including ourselves, the weekend off.  Enjoy it, we’ll report on Hopkins on Monday.

Love,

-Bruce

6-18-10

Status: 9.0/10. A hearty hotel breakfast and off to the Fred Hutchinson Cancer Center.

Events: Met with the Executive Director, Dr. Fred Appelbaum, for almost 2 hours. A warm, delightful, and extremely knowledgeable transplant expert. Was optimistic about our prospects, and the transplant protocol they follow at Hopkins was jointly developed by the two institutions. He favored recommending and would proceed with the same procedures as Hopkins, which gave us a lot of confidence. He answered our most detailed questions (and let me tell you Lisa can dig pretty deep!). We’ll gve you more info when we return home.

Took a tour of the impressive facilities in the 6-story building. All modern and well thought out, from the large waiting room that had glass partitions, which broke up the space into small, quiet, private areas to the outpatient treament rooms, which were actual individual rooms with curtains and sliding glass doors. Transfusion rooms on one floor, xray on another, and so on. No need to travel all across a hospital floor plan – the advantage of being able to build a center from the ground up.

If we lived close to Seattle or had no children we’d probaby come here, but a support system is vital to doing well, and fortunatetly with Hopkins only an hour away we can keep ours intact.

Had lunch with good friends Drs. Lynn Oliver and Sam Sharar – so great to see them! Good laughs, great compassion, wonderful folks.

Taking an early flight out, back home Friday afternoon. No place like home!

Love,

-Bruce

6-16-10

Status: 9.0/10

Events:  Here in Seattle.  (If we didn’t know, the overcast skies and airport announcements first in English and then in Japanese would have given it away. )

The five hour flight and time zone changes are a little stessful, but we’ll be all set for our consultation tomorrow – good to get other expert thoughts on all the aspects of a transplant.  Back home Friday.

Love,

-Bruce