Day +17 (Arrived Home Safely)

Good to be home and sleep in my own bed. Video message for today. . .

Day +15 (Preparing to move out)

Video post for today. . . .

Day +13 (Hospital discharge)

Today's video message. . . .

And final blood count upon check-out today (although I will have a final blood check 8:30am Thursday morning followed by a final consultation with Dr. Raab) (click to enlarge). . . .

And barring snow or security related issues, this schedule is completely on track (click to enlarge). . .

Day +12 (Last Day in Hospital + Urticaria)

Video message for today. . . .

George's Urticarica due to allergic reaction to one of the previously administered antibiotics [ceftazidime]. Should (hopefully) resolve soon [post transplant note: it did resolve in about a week] . . . .

Thanks to everyone for your postive thought and support!


- George

Day +11

Video message for today followed by blood count graph. . . . .

Blood count history including today's numbers. Bottom line. . . leukocytes recovering quickly, and well. And although you can't really tell from the graph, the platelets are slowly rising. That's the absolute right trend and they will likely be good enough for Monday's hospital discharge. Still gotta remain vigilant against hemorage risk for a while though . . .



Picture outside the hospial room of the snow. Doesn't appear to be much but it is more than Heidelberg is accustomed. . . .

Day +10 (Recovery well underway)

Video message for today. . . . .

Blood count progress (click to enlarge). . . .

Day +9 (Leukocyte recovery!)

Sorry, too tired to say anything more about today. But the good news is that my leukocyte levels rose today for the first time! [Post ransplant note: This initial indication of leukocyte recovery happened just about as early as is normally possible. An excellent indicator of a very good recovery timeframe. Coincident with this I quickly started feeling much better which is evident on the following day's video posting.] Should be on track for hospital discharge early next week.

Schedule, attached (click to enlarge). . .

And the special woman that is helping me through this, of which I would not be able to survive. . .

Day +8

***BREAKING NEWS 8:10PM Heidelberg***George tested negative for H1N1 and no longer required to follow quarantine protocol.

By the way. . . I forgot to mention in the attached video that my leukocyte levels are unchanged from yesterday. Which means that I am still neutropenic. Professor Dreger and Dr. McClanahan said that I would likely have to wait until day +11 to see any significant rise in my blood counts. So right now my immune recovery is in a race with my fever. I just gotta hang in there for a few more days.

Day +7

It was too soon for me to tell a couple of people that George would post today... but it's Yuko again. .. sorry. I am gonna give you just a quick update for today.

Not really a big change as far as his condition. He makes a painful face because of a pain due to, we think, the mucositis in his esophagus and nausea. Still he has a fever 38.6C (101.5F). He's still neutropenic but Dr. McClanahan told him his leukocyte counts are "slightly" increased. Although it is possible this is just a variation in the [measured] data, we hope this will be a good sign .... George and I are praying this is a sign of successful engraftment and we will see an upward trend of the counts tomorrow.

Platelets are very low still. I saw many bruise on his arm and legs, especially the area for the blood drawing on his arm is bad, which makes me feel terrible. When I visited this evening, he said he got infusion of platelet. Hope it helps.



He started to take a nutrition IV. It is a bag filled with white solution/emulsion, the nurse practitioner explained it's because of fat contained. Then he asked . . . . . "omega-3?"



... ... Just to make sure it's made of fish oil, not .... lard or something :D

And of course, shedding...
It seems like there is a dog on the bed. A dog is not supposed to be in a hospital :-)
One of the nurse practitioner, [nurse] Frau Diana, kindly helped him to shave his head.
Thank you very much... he looks good.

Big news today is that Tateishi san, George's Japanese roommate, was discharged. Fantastic!... even though we miss him. We hope he and his family will visit us in California some time!


And for the last of today's posting... Heros in Heidelberg.


These 4 doctors take care of George and see him every morning.







And he gives George a physiotherapy.




Ciao ciao!
-Yuko

Day +6

Hi, it's Yuko again. Sorry, but no luck for George being up a new posting today... he needs more rest. I just came back from the afternoon/evening visit with him.

His vitals this morning was BP 120/80, pulse rate 100 (a little fast), body weight 63kg/139lbs (his normal is 68kg/150lbs). Body temperature is around 38 - 38.4 C (100.4- 101.1F). No blood test results available yet, but most likely still in neutropenic condition. Dr. Ho mentioned hopefully from this Wednesday the leukocyte level will be going up. This is very good to know and encouraging. It should help him a lot to feel better, mentally and physically for sure.

He has not ingested any food for five days now.Even if he drinks a small amount of Sprite, he feels nausia and throws up, but his stomach is basically empty so looks like just bile comes out ..(o oh, sorry, that's too much detailed information...)

His hair starts falling off, I could actually see his shedding. (click to enlarge)



He said he would shave his hair using a clipper tomorrow. Also he said he feels very weak and like "loopy" because he thinks he has not eaten but taken a lot of drugs through IV; antibiotics and anti-emetic medications... all legal drugs, just so you know :)

So I just tried....I tried to pull hair on his legs, but no hair comes off, so asked him "what about your nose hair???"

... o oops, not funny at all....

So I stopped joking around with him, but just pray for him to be back to the "George" who we know :-)

Today is January 4th, the day I have to get back to work. So I worked from here. I completed more training which was overdue, somewhat releived. I did laundry (yeah!), which sometime takes forever with the dryer here. (it's not a complaint.... yes a little bit complaint...) Working maybe keeps me well-balanced.

No picture today. Hope everybody has a very good morning/day/evening whereever you are.

Thanks!
- Yuko

Day +5

Hello, this is Yuko. It is snowing here in Heidelberg.
Very sorry, but George is too sick to post today. He wants me to give you an update, so here I am.

Just a quick update. His leukocyte level is 40 today, he's been in neutropenic condition for 4 days already. Platelet level is very low, too. Dr. McClanahan told him to let them know as soon as he feels severe headache, it should be a sign of bleeding in his head... scary.

He still has fever about 38C (100.4 F) when I visited this morning, and he continues to take an antibiotic medication through IV. No mucositis in his mouth, but maybe in the esophagus, therefore he complains pain and discomfort and could not eat anything. Yogurt was left unopen on the side table. I hope he could take pills supposed to be taken "Morgen", though. He takes anti-acid and a painkiller (both are syrup or liquid type) for this pain.



He also wanted me to update other side, what I did, etc...
I didn't do much today, Sunday is a rest day. I read books in most of my free time, or listening 80's music on "Deluxe Music" channel. I guess German people really love 80's, right Judy?

My sister gave me an update about Riki. He and his grandma took a bullet train (shinkansen) to visit my sister's family in Tokyo. He was so excited on taking a shinkansen, which I can easily imagine. Seems like he adjusted to new environment very well, thanks to my mother and all of my family there, and enjoys playing with his cousins (shown in picture). One of my good coworkers said to me before. . . . Everything has a good(positive) side and a bad (negative) side, so you should look at both sides. One of the positive sides in this current situation may be [that it is] a good chance for Riki to bond to my side of family. Now he knows he has a very good extended family in Japan.

I really hope George will be getting better tomorrow so he can say hi to you all.
Let's see...

Thanks!
- Yuko

Day +4 (Neulasta administration)

Today my leukocytes dropped to 140 and the platelets are at 68. The numbers are now scraping the bottom (click to enlarge). . . .


Today I had my Neulasta injection. An important event for getting back on the road to recovery. Should start to show improvement in blood counts by next weekend. I really hope.

I still feel sick as a dog. I have to force myself to eat even the most minimal amount of yogurt. Understandably I'm losing weight. I'm down to 63kg (normal weight 68kg) and based upon my (lack of) eating it is likely to drop a lot more. The nurse told me that they'll start me on a nutrition IV if I remain this way.

Also, my temperature has risen to 38.8C, a fever. The standard procedure as a precaution is to start people on IV antibiotics if this happens (90% of people fall into this category and are nearly always given IV anti-infective agents). I have been fitted with an IV cannula in my forearm and am being administered the antibiotic Ceftazidime at regular intervals around the clock. It's a third generation broad-spectrum anti-bacterial agent known as a cephalosporin and is commonly given to those that are febrile neutropenic. This is just a precaution to help gaurd against the possibility of an underlying infection that would be very dangerous with my current state of having no functional immune system. But for the vast majority of people that get a fever during this phase of HSCT, there is usually no specific identifiable cause of the fever. Hence it is an idiopathic (cause unknown) fever, which is quite common in this situation and is why nearly all people receive IV antibiotics at this time during hospitalization. The fever normally resolves by the time successful engraftment manifests. [Post transplant note: My immune system showed initial signs of successful engraftment coincident with fever reduction by day +9. So in the end, everything worked out fine with no unexpected complications (except for a temporary skin rash/urticaria).]

Sorry. I feel sick as a dog right now and can't write anymore.

Day +3 (New Year Day)

Akemashite Omedetou Gozaimasu!! (For those that don't speak Japanese that means Happy New Year!)

Also, Dr. Thalheimer stopped by for a few minutes to wish me a happy New Year. Very nice to see him. Such a great doctor and wonderful human being!

I'm not going to waste any time today and just cut right to the chase. . . I feel like crap. Tired, lathargic, run down and most of all my GI tract is telling me NO FOOD, NO WAY! Saying that I feel like I've been through-the-wringer would probably be a fairly representative expression. My lack of desire for food is similar to the time in college when you get horribly sick from drinking [name your own alcohol] and never want to drink the same stuff for the rest of your life. Based on my mindset right now I think I could swear off solid food for the rest of my life. I'm told that this is because the epithelial tissue layer of my entire GI tract is coming off from the chemo. At least I know that this should resolve in another week-to-ten days. I have to remind myself of my own maxim. . . . "No situation is so bad that it cannot get worse." It's nice to have the nurses here providing some moral support and reassurance that they are here to help me through it and that this too shall pass.

This morning my leukocytes measured at 222 and platelets at 102. In this setting that is essentially zero. My immune system is gone (and also "reset" from the standpoint of my MS). Detail history (click to enlarge). . . .



Last night Yuko and Frank went to Old Town Heidelberg to ring in the New year. I'm very glad they had an enjoyable time, loving to see the images and video. I'll take watching it from a distance and am glad to be here in Heidelberg. If I never had the opportunity to see Frank again, I would be glad to know this is my last image of him. . .


They went over to the bridge entrance into old town to join the throngs of other New Year revelers. I think the following video requires no further explanation. At least now I know where all the German socer hooligans migrated to. . . . . . .

Day +2 (New Year Eve)

First note. . . Tahara-san & Yasuko-san. . . . Thank you! You are very kind (we all already knew that) and Yuko and I are looking forward to returning the kindness in the new year! Can't wait.

And another issue of great importance. . . . Judy left today to spend the night at Frankfurt airport before leaving tomorrow for a flight back to SFO. Judy, you have so greatly helped us more than my words can express. Thank you times a thousand times! We're looking forward to showing a true appreciation of your (and Tif, too!) sacrifice in the New Year. Here's to wishing you a great flight!

Current blood count numbers (click to enlarge). . . . .





My white blood cells are dropping precipitously, along with the platelet count. Just as expected. So no surprise here. I was told that once the neutrofils drop below 1000, they don't bother measuring them. So I'm below that threshold now. However, I also got to know my past three days of platelet counts, also an indication of the stem cell activity in my bone marrow (or in this case, the lack of activity).

Based on the current blood count numbers the nurse gave me specific instructions for my behavior going forward (until my blood counts come back to life), including the following:

• Be carful what I eat! - absolutely no salad or anything raw! And no probiotic yogurt, unpeeled fruits or vegetables. Most things that are commercially processed and packaged are probably OK, so long as I check with the nurses first. Chocolate pudding is fine, of which I will probably be eating a lot of that over the next ten days. My stomach is still unsettled. It may worsen. A lot. Where's my lucky rabbit's foot when I need it?


• I have been instructed to inspect my skin every day for bruises due to low platelet count and report if I find anything.


• I now have to observe strict sanitation rules; can't be around any sick people and need to wear a filter mask when I walk outside the room.


• I'm told that the vast majority of people experience idiopathic fever that may last the full ten days. I'll report on that as it develops. [Post transplant note: Yes, indeed I did have an extended fever. Just like the majority of people undergoing the same treatment. It's normal & usual.]


• I can now sense change in the epithelial tissue of my mouth. Anyone know any witch-doctor spells to cast away the evil mucositis spirits?

And then the small pleasures. . . . It was nice to take a shower this morning without the catheter sticking out of my neck. I think I did an improved job of getting clean.

I expect to be mostly tired and/or sick over the coming ten days, always looking forward to when the leukocyte counts start to improve. I hope Yuko will be able to somewhat enjoy her time around town. I will have to get my entertainment vicariously through Yuko.

Today Frank drove down all the way from Dresden to be here for New Year. Thanks, Frank! (BTW. . . you can take Yuko, but you can't have Riki!) I'm glad that Yuko and Frank will be able to ring in the New Year together. . . .


Have a great New Year celebration everyone!

- George

Day +1

Today I have compiled my relevant blood test result numbers in the following image (click to enlarge). My leukocytes (all combined five white blood cell types in the human body) are dropping fast. The normal range is usually above 4000 / nL. This morning's blood draw tested out at 1350 / nl. So everything is going per expectation and I should be neutropenic (zero immune system) definitely within the next 4-7 days, for sure. One consituent of the leukocyte family, called a neutrofil (a type of white blood cell that specifically attacks bacteria and fungi) is also an important number to measure. The neutrofil count is also quite low at 1000 / nL. Eventually that will also hit zero.

Just in case you want to understand more about the various leukocyte cell types circulating in the bloodstream and their specific functions:

http://en.wikipedia.org/wiki/Leukocyte


So basically everything is going as expected. I have been warned that the worst side effects are yet to come. But they should last about a week, maximum. I still haven't had any nausea yet, nor any overt indication of mucositis. But my stomach is definitly unsettled. For the past three mornings I've had some strong discomfort with what feels like eosophageal acid reflux [post transplant note: this is the one mucositis lesion in my eosophageal pasageway I got from the chemo]. The nurses gave me some antacid liquid I can take when this occurs. It does not have an instantaneous effect and takes a while to kick in. But eventually it seems to do the trick.

For food, more often I'm turning towards the pudding and pasturized yogurt with a litle fruit in it. Jergen suggested the pear & apple baby food for when it get's really bad. I think I probably will do that.

Also. . . This morning the nurse removed my neck catheter. The upside is that it will be much better for me to take a shower without having to worry about keeping it dry. On the other hand, I'm going to now have to get stuck daily with needles for the blood tests and/or medication they might need to administer.

And thing to last note. . . . . daily tablet medication. . . they dropped my three steroid anti-nausea steroid medications and have added twice-daily Trimethoprim (Bactrim) wide-spectrum prophylaxis antibiotic as an added measure of infection defense.

Yuko and Judy bought some non-alcohol champagne for me to share with some of the fellow patients in the Ackermann ward during New Year. I hope your New Year will be a step-up compared with my scenario.

See you tomorrow!

- George

Day 0 - Stem cell transplant / infusion Birthday

It's now Tuesday morning here in Heidelberg. Yuko and Judy have arrived for the big day and snapped these pictures to memorialize the event of the day. And today IS the day! And it could almost go unnoticed because my stem cell transplant infusion procedure only takes a matter of minutes to complete. Perhaps about fifteen-to-twenty minutes, or so. It could easily be described as anticlimactic.

But that description beguiles the real significance of today’s event. This isn’t just about me getting life handed back to me in terms of surviving the destructive chemotherapy (although I have to admit this is an important part of the event). No, the real issue in my being here going through this marks the turning point for curing my MS. This doesn’t mean that I won’t have some temporary worsening of existing MS events & symptoms in the near term. I expect temporary transient worsening of my existing symptoms for perhaps several more months due to the general chemo stress on my body. [Post transplant note: actually the only MS-related symptomatic worsening I experienced was slight, but noticeable leg spasticity. However, as expected, this was only temporary and it completely resolved in a matter of a few months. Other than this, I had no added MS symptoms of any kind.]

Instead, what today significantly marks is that the underlying etiology and root cause of my Multiple Sclerosis is going to be immutably changed for the better. I completely believe with all my heart (and foundation science) that today is the seminal day of fundamental and positive change by means of what most people would probably consider this aggressive therapy. But I have confidence that in the long run and end, this will pay off in spades for me and my family. I think that within the next year it will likely become clear to me that my MS disease activity will be stopped in its tracks. And then on top of this, there is a good likelihood (>60% chance) that I will see actual reversal of existing deficit caused by the MS. [Post transplant note: This was too conservative of a time prediction. By +6 months it became clear that my disease was both stopped, and reversing. As good as I could have imagined it would be.]

So bottom line. . . this day marks the transition to my "completely new & improved" immune system that will likely be MS-free going forward. At this point I think there is little more to say beyond this comment since in a scientific and clinical perspective it will take some more time to show & prove the actual result.

George's stem cells during re-infusion. At first glance it doesn't look like that much. Hard to believe that's my future life & health in that bag. . . . . .


All done!


Just a side note to anyone considering this treatment for MS. . . prior to the cryopreservation of the stem cells a chemical preservative with the acronym of DMSO is added to the stem cell plasma solution to help reduce the destructive effect of the liquid nitrogen temperature on the stem cell walls. Basically it helps to somewhat protect the stem cells and make more available for the beneficial engraftment effect once they are back in my body. However, DMSO has a tendency to cause a sudden, but common acute side effect that feels like chest tightness. As if someone sat on my chest and a little bit restricted my breathing. Dr. McClanahan administered an antihistamine prior to the procedure in anticipation of this effect. It must have had some benefit because it only lasted about fifteen minutes, and then resolved.

Last note. . . I can't detect it myself but DMSO gives off a strong garlic/onion odor from my body for about 24 hours. This evening Yuko and Judy said I really stink of garlic!

Time for me to hit the sack. Hope everyone is getting ready for a great New Year celebration this week!

- George

Day -1 (chemo rest day)

Just posting the updated info on the current schedule first, followed by today's message (click on schedule to enlarge). . . .

Just one more day waiting until I get my life back in the form of a cryogenically frozen bag of my own stem cells. . . . So today is a simple day of getting some saline solution and drinking plenty of fluids to purge any remaining chemo drugs from my body in preparation for the stem cell infusion tomorrow so that the stem cells have the best possible survival and engraftment opportunity. Following the stem cell infusion (either the same day as the infusion, or at sometime after that, depending upon Dr. McClanahan's judgement) I will receive a single dose of Neulasta G-CSF. This is really a fantastic drug that promotes stem cell replication, mononuclear cell mobilization and immune recovery to get my immune system back up and healthy at the earliest possible time. Neulasta is a relatively newer G-CSF drug (also an Amgen product just like Neupogen) that has a self-limiting negative reaction coefficiency in which it works constantly and as hard as possible to restore the immune cell function in the bone marrow. As the immune system recovers toward a normal level the Neulasta drug (administered as a single SC injection) becomes consumed and tapers-off it's active pharmacologic effect. So basically, it works as long as required and then extinguishes it's own activity when no longer needed. Probably why it's also an expensive drug. I'm expecting it to be well worth every penny of the cost. Especially since I should be able to expect the most rapid recovery possible with it's use. I'm going to have to check into buying some Amgen stock.

Different subject. . . . sometimes small things perk me up (other than Yuko & Judy's fantastic help and support here). The first of which is that I measured in my reduced water retention weight at 67.1kg this morning accompanied by my totally normal & usual BP level of 120/70. I'll keep my fingers crossed that it will not rise again. At least not to the level seen before.

And then I just wanted to make one more comment about the hospital food. Honestly, I think the kitchen that prepares the food here at Heidelberg University Hospital does a very good job. No joke. Today I had a very delicious chicken in a sauce and potatos together with some salad and a nice minestrone soup. That hit the spot!



In anticipation that my stomach will likely eventually become weaker to take more solid forms of food, I went by the hospital cafeteria and picked up some extra packs of chocolate pudding and fruit pudding that I can eat when I don't feel like solid stuff later. I just store it in the ward refigerator until I need it. Yuko suggested that I might also try some jars of baby food that they also store and provide to patients that might need it. What? I suspect she's trying to tell me a different message. Yuko! . . I'm not whining THAT much, am I?!

My new "Birthday" tomorrow with a simple stem cell infusion. I will get my life back, and just as important (the whole reason I'm here!) this will mark the major milestone for curing my Multiple Sclerosis! I do beleive that based on the overall published scientific data, it should be just a matter of perhaps a year, or less and I will come to realize that I will be cured (halting of disease progression) of MS. And then I'll also have better-then-even odds that I will also be able to experience a reversal of actual disease progression. Although not gauranteed, my EDSS score of 3.5 bodes particularly well for the distinct possibility that I will be able to actually run again and be physically active with my son, Riki. I'm looking forward to the one-year stem cell transplant party we will plan for December, 2010 (where the Heidelberg medical staff will be invited as special "hero" guests) so that I can personally demonstrate my recovery and improvement.

See you tomorrow for the simple, but important day!

- George

Day -2 (Sunday - Last day of chemo)

Today's video message to begin. . . . .

In the evening Yuko & Judy brought me some cheeze pizza (my favorite, and yummy). . .

And some pictures of Yuko & Judy's Heidelberg outing day. I think the images should be self explanatory, I think. At least I think they had some fun. . .

Day -3

Just a brief video today from George & his angels. . . . .

Day -4 (Christmas Day)

So Merry Christmas to everyone!

Sorry. This is the only "official" Yuko & George family Christmas portrait for this year. It'll have to do cause it's all you get beyond our sincere thanks & appreciation to everyone. But just in case it's not obvious, I am extremely happy that Yuko is here with me during this whole process. I hope that I'll be able to make it up to her in the future.

And most of all, Happy Birthday to my Mom !! (Yes, she's born on Christmas day. That's why her nickname is Christmas Carol.) I still can't imagine how many b-day & christmas presents she was jipped-out of over the years for the intersection of those two simultaneous events in her life. I'm hoping to come back healthy and have her as the special guest of our party in 2010.

Also. . . Dr. Raab stopped by today to wish me a Merry Christmas. I was so happy to have seen him today. What a great guy.

Just a quick video recap of the day's medical activity for me. . . .

Also, today my roommate, Tateishi-san, whom we now consider each other brothers becaue of having to endure essentially the same stem cell transplant procedure, was visited by his wife, beautiful two daughters, younger brother and father. He invited me along to meet them, which was very nice. The young girls are not allowed in the Ackermann ward to reduce the chance of spreading infections, so we all met up in the hallway outside the front door. We put on masks to reduce the chance of picking up any infectious agents, especially considering that Tateishi-san is currently neutropenic and has zero immune system. I'm not quite there yet (will happen next week for me) but since I am his roomate I want to be sure he is not exposed to anything potentially dangerous.







So I said I would mention a little more regarding the hospital food. Gotta find some time to be a critic to keep me busy. . . . . The hospital offers a meal preference selection menu that I completed and turned in. It basically allows a choice between a red meat selection and a non-red meat selection (which might be chicken fish or vegetable). I thought I had checked the non-red meat selection for every day.

The meals here follow the same daily pattern. Morning meal is very light, usually consisting of some bread, cheese and a light vegetable broth soup. They also provide cofee or tea. Neither of which I drink. I just opt for the orange soda or apple juice that Yuko brought for me. Perfectly fine for me since I usually never eat breakfast anyway. But I have to take my morning medicine doses with some food, so this turns out to be perfectly sufficient. It all tastes fine.




The lunch is always the largest meal. For my Christmas lunch today I had a very nice tasting vegetable lasanga in a cheese-pesto sauce. Quite tasty and I ate the whole thing along with a small salad, fruit cup and a few cookies thrown in for this special day.

As you can see the dinner is also a very small meal, which is typical. I'm not sure if I or the hospital messed up on the menu selection. It looks like they provided me with roast beef. That's dissapointing. I just ate the cheese, bread and butter. I have been saving some wafer cookies I can snack on later if I need to fill up a little more. Hopefully all my future meals will omit the red meat.

BREAKING NEW FLASH **** It's now 7:45pm here and Yuko said she and Judy can bring over some smoked salmon for me. Yum! I love smoked salmon. I just cleared with the nurse and I know I'm going to enjoy that. They'll start my first chemo bag in a a few minutes and then I can meet up with them and get a quick bite of that salmon I'm dreaming about right now.

Looking forward to the last day of chemo this coming Sunday! Then my new "birthday" with the stem cell infusion on Tuesday following a one-day break to clear the chemicals out of my body. Of couse then the biggest downside will come soon after. . . . the dreaded neutropenia. But when it happens, that is the confirmation of totally resetting my immune system to cure my MS. I can endure it! I'm sure. And I'm looking forward to a better future quality of life myself, and more importantly, my family!

See ya'll soon!

- George

Day -5 (Christmas Eve)

Quick message including mention of my good friends at Mattson . . . .

So I'm able to follow a pretty regular hospital schedule now. . . . Wake up around 7:00am (still dark outside), shower (thanks to Yuko and Judy for the liquid body soap from the store, it's great!), dress and then go weigh myself and then get the usual morning tests from the nursing staff. They always ask if I feel any nausea from the chemo. Nothing yet. Can still eat well (the hospital food is far better than I expected. And better than any airplane food I've had). Maybe next week things will change with the nausea. Who knows. Everyone responds differently from chemo. I'll keep my fingers crossed.

Then I get my two infusions of chemo (Etoposide and Cytarabine) starting at 8:00am. Together with the saline flush that follows it about a three hour process. I repeat the same thing at 8:00pm. I usually make it to sleep about midnight. Yuko will stop by again later today and we can go out into the quiet hallway of the main hospital and talk junk behind people's backs. (No! We would never do that. Well, Yuko would never do that.)

A few things are becoming apparent. . . the first thing is that I am currently gaining weight. I've gone up 5kg and now total 70kg (154 lbs now but started at 143 lbs). I think this is a direct consequence of the anti-emetic steroids I'm taking to stave off the nausea that causes fluid retention. I'd rather take the weight gain over the nausea any day. I hope it lasts through the treatment, but that may be wishful thinking. But even if it doesn't last there are many more options of various anti-emetic drugs remaining in the arsenal. May have to try a few others next week.

The next thing is that my systolic blood pressure for the past couple of days has been hovering around 140, quite high. My BP has never been more than 120. Again, this is most likely a direct consequence of the steroids I'm taking. After the treatments are over and I get off the steroids the doctors assure me that my BP will return to normal.

Also not (yet) a big deal, but I’m starting to feel some tissue roughness on the roof of my mouth. I suspect this is an early indication that mucositis is on the way. I’m super grateful that Dr. Raab authorized the Kepivance (Palifermin) prior to the chemo. If I do get mucositis then it is likely to be far less serious that it might otherwise be. Somehow Yuko and I will have to find a way to repay him for helping me tackle this early on.

Yuko and I spent time together today and she got to meet my new Japanese roommate, Tateishi-san, along with his wife, brother and father. (Cooincidentally Tateishi-san and I are the same age, separated by just a few months.) Tateishi-san has multiple myeloma (he gave me permission to mention this) that was first treated with straight-up chemo. That turned out to be a failed treatment, hence then moving onto the more aggressive stem cell transplant. I’m sorry he has to go through two rounds of aggressive chemo. Kawaiiso desne! But he has an amazingly positive attitude for having to face such hardship. Today Yuko and I met his wife and we saw pictures of his two children, ages 8 and 1. Unfortunately (or fortunately) they don’t let children in the ward due to the high risk of infection. Same reason Riki is in Japan with the in-laws.

I think Obaachan (grandmother in Japan) is doing a great job to take care of Riki. I have no idea yet how we will repay her and the family for their kindness and endurance to do the critically important task of caring for Riki while we are here in Germany. I suspect fine California wine will somehow be involved.


A picture of Robert taking Yuko and Judy to old town. Thanks again Robert, you sweetheart!!

BTW. . . all my Japanese friends will like this one. This is the sign in the reastaraunt (obviously) indicating the restoom location. The server told Yuko that the left sign (in Japanese) was initially mounted upside down for a long time because the Germans there can't read Japanese and didn't know any better. Apparently after a long time some Japanese person mentioned it to them and they finally righted it. I wonder if any Japanese people were forced to pee while standing on their head?

Last note to Bernahard. . . thank you so much for lugging that wheelchair box (that included my filter masks) all the way to Munchen. And thanks for shipping to our aprtment here in Heidelberg. Got everything yesterday, including the brown-sugar cinamon pop-tarts that will keep me alive after I'm discharged from the hospital It was a VERY nice suprise and gift of kindness! We'll celebrate more when you come to Heidelberg. At least Yuko will be able to Qaplah! with you on my behalf.


Merry Christmas eve to everyone!

- George & Yuko & Judy

Day -6 (with updated schedule)

Video message today together with Yuko. . . . .

Current (and more complete) schedule (click to enlarge). . . .

Day -7 (First day of chemo)

First note: Johannes. . . .Thank you so much for your call today. I really appreciate hearing from you. I'm glad Tahara-san could hook us up. (BTW. . . are you sure MTSN is a great stock buy right now? Can I really make 350% on my money in two years? I'll go out and buy up 500,000 shares right away. Even though everyone else is telling me the stock is a dog. All because I trust you so much!)

Also, Yuko arrived today from Japan. We spent some time together before she had to leave to go eat something. I have implored her to go see the Heidelberg Christmas market tomorrow because it's last day open and if she doesn't see it with Judy tomorrow, then she'll miss it completely. I would be dissapointed if that were to happen.

Onto the hospital adventure. . . I'm rapidly understanding and getting used-to the routine around here in the Ackermann ward. Another few days for Yuko and I and we'll have this things down pat! I explored the Ackermann ward little kitchen station a little more. They make available a few snacks and the German equivalent of "Ensure" nutrition drink. That'll come in handy when I get mucositis. They also have a lot of sparkling water for the patients to take and drink at their own convenience (just like the other items). The medical staff told me that sparkling water primarily provided because it is likely to have fewer included pathogens as opposed to ordinary bottled water. But yuck! I hate sparkling water. I have to make it go flat before I drink it which is a time-consuming process. So I have to plan ahead if I want water. However, today I discovered the "other" refigerator and they also have coke. It's not my favorite, but I like it more than that sparkling water crap. But to make things easier, today Judy brought for me several bottles of carbonated juice drinks. And a couple packages of cookies, too. I just discovered that she brought wafer cookies. My favorite! I love wafer cookies! Thanks a million, Judy!

Last night I went to sleep around ten thirty, or eleven. Slept well until seven this morning. My roomate, Jergen and I have similar sound eminations. So sleeping is no problem, we don't disturb each other during the night time. However, looks like every night at 11:00pm and then 4:00am the nurse comes in to take Jergen's blood sample. Probably they will do the same to me sometime after day 0. The nurses are quite considerate and I barely notice when they enter the room to take blood or give IV medication. They always turn out the lights when they quietly leave the room so we can continue sleeping.

Today my roomate Jergen is at day +19. Still within the outer range of the statistical norm for engraftment recovery, but still it's significantly longer than most on average. Somewhat unusual I beleive. I hope that I will have indications of successful engraftment (rising neutrofils) by/before day +12 or +13. [Post transplant note: Signs of my successful engraftment manifested at day +9. Excellent recovery!] If Jergen goes much longer without signs of engraftent, I'm not really sure what steps the medical staff will take next. I wish he and his wife (who has faithfully been here every day, most of the day) the best possible outcome.

Because Jergen was here first, and much longer, I consider that he has squatter's rights. So he got the window position that automatically comes with a nice big shelf where he can put many of his things. He even put an X-box game console there! (He said his son kept the Wii for himself.) He's such a good roommate that I almost hate to see him get better and leave. Who knows what the next guy I get as a roomie is like. Maybe he snores the roof off! I think I'll clamp off Jergen's IV lines tonight after he falls asleep. :-)

And as a side note regarding vistors. . . ALL people must use the liquid alcohol hand sanitising lotion (dispenser mounted at each room door entrance) prior to entering. This applies to both the patient rooms and the small ward kitchen area. Although not specifically prohibited, I am going to opt for no hand-shaking or touching of other people (Yuko excepted, I can't hold myself back).



And of course I have the nearer bed. Perfectly fine for me. It's closer to the bathroom (which I'll explain in a second why this is important), and beats the US Navy submariner's situation where they have to "hot bunk." That's where the space is so limited on a sub that there are fewer beds than sailors. So some guys have to sleep in a bunk while others are on-duty. At the shift change some guys jump into a bunk that is still warm from the previous sleeper that was there just a few minutes earlier. Darn! That would seem to me like sitting down on a warm toilet seat. Kinda creepy!

The bathroom is perfectly adequate for two people living in the same room space. I have addionally been instruced to clean the toilet seat with the available large alcohol wipes provided next to the toilet prior to each and every sitting use. I think that's pretty understandable. I should probably get a bucket of these for our home.

I wake up at 7:00am when in Germany it's still pitch black outside. Then I go for my shower while Jergen is still sleeping. Works great, although I try to be careful to keep my neck bandage dry.


So after I got up and showered at 7:30am I went out and weighed myself and reported back to the nurse while she recorded my BP, pulse and temp. She then gave me my five morning medicines (which I assume I'll take every day so long as I get them down), as follows:

Emend / Aprepitant – Anti emetic (nausea)
Kytril (Kevatril) – Anti emetic (nausea)
Fortecotin (German name) - Dexamethasone (US name)- Anti-emetic (nausea), anti-edema
Pantazol – Proton pump inhibitor used to prevent ulceration of the esophagus from chemo
Alna Ocas (German name) – Tamsulosin (US name) – For BPH

And as Dr. Raab had previously alerted me, the head of Heidelberg's entire bone marrow / stem cell transplant program (Professor Anthony Ho) came by with an entourage of about six or seven other doctors. I was immediately able to make a connection with Prof. Ho because he previously headed up the entire bone marrow transplant program at the University of California, San Diego (UCSD), my alma mater and hometown. He was gracious enough to pose for a picture together with me upon request.



In addition, Prof. Ho, same as all the other Heidelberg doctors (except the neurologist) also agreed with the foundation of valid science behind utilizing a stem cell transplant for for a curative effect of an autoimune disorder such as MS. As far as he knows, I am the first person to be treated for MS under his department leadership, validating the still-uncommon nature of the treatment outside of a trial. Prof. Ho is aware of the phase II trials in the US, and even personally knows several of the key researchers in the field such as Dr. Richard Burt at NWU. He also agreed with the basic concept of my hypothesis that a totallly & fully myeloablative therapy (of which I am receiving here) may be better than the lymphoablative therapy that Dr. Burt has been developing. The main development is that Prof. Ho said that they are getting Heidelberg's mortality rate consistently toward 1% ! So in the end it may turn out that all the work that Dr. Burt did on the lymphoablative protocol may be of little added benefit. Time will tell, though.

Then around 11:00am I started my first single dose of carmustine (brand name BiCNU) of the BEAM protocol. So I already mentioned about melphalan being the nastiest of the chemo drugs. Well this drug, carmustine, is the second nastiest of the baddies. Like melphalan, it too is is an alkylating agent derived from earlier mustard gas weapon technology and it still beats me as to how they figured out in the 1960's to adapt a weapon of war as a viable medical treatment chemical. It has a slower myelo toxic reaction with bone marrow compared with Melphalan, but when it kicks in it really annihilates the bone marrow stem cells. Exactly why I'm here. So it's OK.

The machine that utlizes a monitored drip IV infusion looks like this. . . .




Now I gotta tell you. This machine is great. It can simultanously adminster two measured-dose chemicals, and also a regular drip saline solution on top of it. But here's the best part about this apparatus. . . It plugs into the wall to run on AC power. But with all the combined chemo drugs and extra ample saline solution going into my body that over several hours of chemo infusion I often have to pee every 10 minutes (that isn't a joke!). So I can simply unplug the unit from the wall and it automatically switches to internal backup batteries to operate. I'm not sure how long the batteries will last, but I think it's quite a while. Perhaps a couple hours. The important thing is that I can wheel the IV pole cart (which is on casters) to the bathroom with me and take care of business! I also can take it outside and walk around the ward if I want. Nice unit made by Braun. Guess they make more than just nice shavers.

So the nurses handle all the basic (but still critically important) stuff like IV's. But the chemo drug is administered by a slightly higher level person. (Perhaps they like to follow a more formal protocol for such dangerous chemicals going into someone's body?) The ward intern is Herr Sun. He grew up in Germany, but his parents are from Taiwan. So he speaks perfect mandarin. I think we got some connection when I told him I used to live in Taiwan. His next step in a couple of years is to begin his residency here at Heidelberg University Hospital (he told me this is the place that is widely regarded as the number one medical facility in all of Germany, perhaps even in all of Europe. So long as you don't ask any French people). He will be a full fledge doctor in just a few more years (I almost wrote "tears." But I think its the same thing). BTW. . . like all doctors here, his English is perfect. The nurses generally don't have "perfect" English, but is instead complely adequate for efficiently interacting with, and managing the patients.



So he brought in the carmustine drip bag (with a UV light shield protector bag on the outside). Just a little over one liter and adjusted the pump to infuse 450ml per hour together with Saline solution at 50ml per hour. Exactly a 9:1 ratio. Interesting.

So I could sit on my bed and get the chemo. Go to the toilet every ten minutes. Repeat. About an hour and a half in I a had a sudden onset of headache, what felt like pressure in my eyeballs and a completely new effect experience where my gums (and only my gums) started burning. Dr. McClanihan infused me with some antihystamine and had me take an acetiminophen hypothesizing it was a possible allergic reaction to the chemo. We then finished the bag of carmustine. She must have guessed right because I felt completely OK after about an hour and a half, to two hours later.

While Judy was in the hospital room visiting with me judy got to meet one of the two very nice ladies that maintains the sanitary conditions of the ward (a VERY critical job), Her name is Mercedes, born in the Phillippines. (Does that mean if she were born in Germany she would have the name Daimler?) Anyway, Mercedes is extremely nice and invited Judy over to her home for a nice meal sometime over the next couple of weeks. How wonderfully nice! She will definitely be getting a box of Yoku Moku cookies.

And then at the end of the day the nurse came in and changed all the adhesive bandages that keep my jugular catheter in place.. She did a very nice job. It now looks like I have decorative tassels hanging from my neck.

More tomorrow when I will be receiving four doses (more than 4 hours total) of both Etoposide and Cytarabine.

So this is an important last note regardimg numerology. And I didn't tell Yuko about this before she left Japan but the number of the room is "4." In Japanese the sound of the number four (Shi) also is the same sound of the word "Death." This is why you never see buidlings in Japan with a 4th floor, nor will you ever see a hospital room in Japan numbered 4. Hope she's not freaked out by that. Anyway, actually my favorite number is the number four. When I was in cub scouts I won 4th place with my pine-wood derby car that I also numbered 4. So there's gotta be some luck somewhere with the number! I think it will pull through to the end.

More next time.

- George