Tuesday, December 22, 2009

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

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