Well, we almost made it out of Germany. We woke up at 3am Saturday to head to the Munich Airport. I was feeling weird pains in my side but ignored them -- we had to make it to the airport and turn in the rental car by 6am for my 7am flight to Amsterdam.
We didn't make it on the first try. We only made it 5 miles down the road and the pain was excruciating, I couldn't imagine driving the 2 1/2 hours to the airport. We turned around and tried to imagine how we could reschedule both of our flights.
Twenty minutes later (after some aspirin), I felt better and was determined to make it, so we headed out again. It was still pitch dark and raining cats and dogs. The car navigator picked the weirdest route for us in all creation -- through every little town and curving mountain road, which of course was a real joy to navigate in my condition. After an hour of this, I really couldn't drive any more, so Liz took over. Finally, on the motorway to Munich, I realized that I was doubling over in pain. We decided to call Herr Dr. Thaller, and fortunately he answered the phone at 5:30am, and told us to come back to the clinic for an examination.
After a quick ultrasound once-over, he diagnosed me with a swollen lymph node, which was blocking the ureter from the kidney and causing pain. He sent us to the hospital, and fortunately they found out that a big dose of ibuprofen would keep me out of pain for a few hours. They told me to wait overnight, and if I was still in pain, I needed to go to a bigger hospital with a urology department.
So then we began to wait. (Meanwhile, we had to find a new flight, a place to stay for the evening, etc. etc.) The ibuprofen worked like in a charm, but going to bed that evening I felt woozy -- and that night I sweat more than I ever have in my entire life. The bed was literally dripping from head to toe, I must have put out a couple of quarts of sweat.
But by morning I felt great, and didn't need any more ibuprofen! The sweatstorm was the breaking of the fever, or infection, or whatever had caused the lymph node to swell up. And in retrospect, it was to be expected with the dendritic cell therapy: my prostate had previously swollen up for a couple of days. In the fight against cancer, infection is a great tool: it's what happens to me every day during fever therapy, and almost every example of spontaneous remission has involved a serious infection. Something about the immune system absolutely flipping out allows it to attack cancer cells that it had previously ignored.
Today we had a 6-mile hike through the mountains to the next village of Pappenheim -- it was a perfectly gorgeous Fall day and I was so grateful to be walking through it.
Sunday, September 30, 2007
Friday, September 28, 2007
Last Day in Markt Berolzheim
I had one last intense fever therapy session today. The shivering was intense (over 30 minutes!), and the fever got up to 104.4°. Also local hyperthermia on my scapula.
Kristina packed up the supplies we'll need to continue injections of the Newcastle Disease Virus until we return to the PraxisKlinik in six weeks. Tanya and Kristina and I had a long "conversation" (them in German, me in English) about my flight times and the time difference with Texas to determine if we had enough dry ice to protect the virus for the whole trip. It doesn't seem like it will be a problem.
Then came "die Rechnung", the bill for the past two weeks. Because of the start of the dendritic cell therapy, this will be our most expensive trip here: the total was $24,887. Yow! Liz wryly noted that this would be a down payment on an apartment in the South Bronx…but then, I'd still have cancer, and I'd be stuck in the South Bronx!
All in all a really great trip. Herr Doktor Thaller gave me the highlights of my laboratory results from this week: my liver functions have *dramatically* improved since the last visit. And my PSA is down to 4.2, less than half of what it was the previous visit. Yippee!!
Labels:
fevertherapy,
hyperthermia,
medicalcosts,
PraxisKlinik,
PSA
Thursday, September 27, 2007
Something's Happening
Another strong session of fever therapy today -- I was shivering intensely for 30 minutes, and my temperature got up to 105°. I was really wiped out by the end of the day.
The best sign of the day was that my body is working hard to eliminate some toxins -- my urine is a weird orange color and it smells wretched. And I feel sick all afternoon after leaving the clinic -- a snuffly nose and exhaustion, which is unusual. These are both potentially good signs -- maybe the dendritic cells are having an effect already?
The best sign of the day was that my body is working hard to eliminate some toxins -- my urine is a weird orange color and it smells wretched. And I feel sick all afternoon after leaving the clinic -- a snuffly nose and exhaustion, which is unusual. These are both potentially good signs -- maybe the dendritic cells are having an effect already?
Wednesday, September 26, 2007
Full Moon Double Whammy
Today I got the best shot of two different experts, and had a battle with my own demons.
It starts out as a pretty normal day at the clinic. I have fever therapy and hyperthermia. I was anxious to get out of the door by 3:30 -- I'm set to catch a train to Augsburg to learn Tibetan Qi Gong from Frau Dr. Thaller.
But right before I leave, my dendritic cells arrive from the lab -- the centerpiece of my two-week visit here to the Clinic. Tanya rushes me to a treatment table and unwraps the box. Herr Doctor Thaller comes in and inspects the filled syringes that the lab had sent. As he holds up the first syringe, he announces that he has just been invited to demonstrate his injection technique at a clinic in Dublin. There's a certain centeredness and power about him when he wields a needle: he is clearly in his element with them.
So he injects dendritic cells into the skin of my shoulders (apparently the dendritic cells have their greatest effectiveness while in the skin). He injects me ten times on each side, slanting the needle in at a slightly different angle each time, Tanya darting in between jabs to quickly wipe away the single drop of blood that appears at each site.
Then Herr Doctor prepares the second syringe: the immature dendritic cells, to be injected directly into my prostate, where they will encounter the tumor cells that have been marked by the Newcastle Disease Virus. He instructs Tanya in German to prepare a dose of Coley's Toxins for injection into the prostate at the same time. I ask the Dr. in English if I'd heard that correctly -- he says, "Yes, your case is absolutely unique, and this is a perfect opportunity to potentiate the cancer cells in your prostate with the toxins. And if you were to tell this to an immunologist, their eyes would go wide with disbelief!"
I like this guy. He's a modern-day version of a Victorian-era entrepreneur-scientist like Edison or Tesla, moving the experiment at hand forward based on insight and empiricism.
So the injection -- only a few seconds, unpleasant but there it is.
Then the swing begins to the other pole of my day: meeting Frau Dr. Thaller at her apartment in Augsburg for a seminar in Tibetan Qi Gong. I'm looking forward to it immensely -- but for some reason, I am confronted with an absolutely astonishing number of obstacles before I get there. I almost miss the train, I have to take her dog with me on the train, the rental car isn't there, the second rental car has a defective navigator, I drive aimlessly around Augsburg for two hours, missing our appointment, I get lost repeatedly and ridiculously. Finally the tribulations part for a few minutes and I meet Frau Dr. Thaller, she is all smiles and extremely professional and patient. Her studio is an island of calm and centeredness: she teaches me several techniques and implores me to remember that whatever else I am doing, knowing how to properly direct my inner energy is the most important part of my treatment.
After learning a few techniques, I am on my own again -- and whatever forces have collected to try and distract me from this (internal demons? external? just the energy of a strange full moon?) are at work again: I get lost several times -- but this time, the navigator is *literally* instructing me to go around in circles, several times, for miles and miles -- !! I'm not freed from the looping until I ignore the instructions, center myself, repeat Om Namah Shivaya in a loud voice, and drive by blind reckoning to meet Liz an hour and a half away.
Whew. Two powerful techniques to battle the cancer in one day, and then a battle to accept and assimilate them.
It starts out as a pretty normal day at the clinic. I have fever therapy and hyperthermia. I was anxious to get out of the door by 3:30 -- I'm set to catch a train to Augsburg to learn Tibetan Qi Gong from Frau Dr. Thaller.
But right before I leave, my dendritic cells arrive from the lab -- the centerpiece of my two-week visit here to the Clinic. Tanya rushes me to a treatment table and unwraps the box. Herr Doctor Thaller comes in and inspects the filled syringes that the lab had sent. As he holds up the first syringe, he announces that he has just been invited to demonstrate his injection technique at a clinic in Dublin. There's a certain centeredness and power about him when he wields a needle: he is clearly in his element with them.
So he injects dendritic cells into the skin of my shoulders (apparently the dendritic cells have their greatest effectiveness while in the skin). He injects me ten times on each side, slanting the needle in at a slightly different angle each time, Tanya darting in between jabs to quickly wipe away the single drop of blood that appears at each site.
Then Herr Doctor prepares the second syringe: the immature dendritic cells, to be injected directly into my prostate, where they will encounter the tumor cells that have been marked by the Newcastle Disease Virus. He instructs Tanya in German to prepare a dose of Coley's Toxins for injection into the prostate at the same time. I ask the Dr. in English if I'd heard that correctly -- he says, "Yes, your case is absolutely unique, and this is a perfect opportunity to potentiate the cancer cells in your prostate with the toxins. And if you were to tell this to an immunologist, their eyes would go wide with disbelief!"
I like this guy. He's a modern-day version of a Victorian-era entrepreneur-scientist like Edison or Tesla, moving the experiment at hand forward based on insight and empiricism.
So the injection -- only a few seconds, unpleasant but there it is.
Then the swing begins to the other pole of my day: meeting Frau Dr. Thaller at her apartment in Augsburg for a seminar in Tibetan Qi Gong. I'm looking forward to it immensely -- but for some reason, I am confronted with an absolutely astonishing number of obstacles before I get there. I almost miss the train, I have to take her dog with me on the train, the rental car isn't there, the second rental car has a defective navigator, I drive aimlessly around Augsburg for two hours, missing our appointment, I get lost repeatedly and ridiculously. Finally the tribulations part for a few minutes and I meet Frau Dr. Thaller, she is all smiles and extremely professional and patient. Her studio is an island of calm and centeredness: she teaches me several techniques and implores me to remember that whatever else I am doing, knowing how to properly direct my inner energy is the most important part of my treatment.
After learning a few techniques, I am on my own again -- and whatever forces have collected to try and distract me from this (internal demons? external? just the energy of a strange full moon?) are at work again: I get lost several times -- but this time, the navigator is *literally* instructing me to go around in circles, several times, for miles and miles -- !! I'm not freed from the looping until I ignore the instructions, center myself, repeat Om Namah Shivaya in a loud voice, and drive by blind reckoning to meet Liz an hour and a half away.
Whew. Two powerful techniques to battle the cancer in one day, and then a battle to accept and assimilate them.
Tuesday, September 25, 2007
Whew, It's HOT in Here!!
Big day at the Klinik today. I didn't respond to the initial dose of the fever therapy, so I received a second dose around 10:30. That *really* set me off -- within 40 minutes I was shivering vigorously, and ended up having a fever of 106.2° -- yow! I think that's probably the highest fever I've had in my life. At that temperature, I am really not present mentally: Liz says I was talking, but I don't remember anything for about an hour and a half. Herr Doktor was really happy -- as I was leaving for the day he pulled off his glasses and emphatically said, "*Very* effective results!" Fry those cancer cells, baby!
I had local hyperthermia today too, focused on the prostate -- I have my legs up in the gynecological position for an hour, which is extremely charming. So far I've been able to persuade Liz *not* to do a drawing of me in that position.
The big surprise of the day was saved for last: my Natural Killer cells had arrived back from the lab. So I got a wad of them injected directly into my prostate. Kids, this is *definitely* something you don't want to try at home! Ow, ow, ow, ow, ow.
I had local hyperthermia today too, focused on the prostate -- I have my legs up in the gynecological position for an hour, which is extremely charming. So far I've been able to persuade Liz *not* to do a drawing of me in that position.
The big surprise of the day was saved for last: my Natural Killer cells had arrived back from the lab. So I got a wad of them injected directly into my prostate. Kids, this is *definitely* something you don't want to try at home! Ow, ow, ow, ow, ow.
Thursday, September 20, 2007
Frau Dr. Thaller
(drawing by Liz of me with acupuncture needles)
So today I'm standing in my briefs on a wooden footstool in Herr Doctor's office. Yesterday I had really bad lower back pain, brought on by the shivering from the fever therapy. (though maybe contributed to by the injection into my prostate a couple of days ago?? Lower back pain is a symptom of prostate cancer.) Dr. Thaller is gliding his hands in an intuitive motion over acupuncture points all over my body, then zooming in with a metallic tube filled with a homeopathic solution including organ extracts, and jabbing each point. It makes a noise like a staple gun, I get a little jolt to tell me something's happening, and the skin is broken slightly so that the solution can enter. It's a wild combination of Chinese and German medical styles.
Meanwhile, my eyes wander over to an old photograph that I've seen several times hanging in one of the window bays. It's of a young girl in her 20s, and her hair style is that unmistakable hippie cut of the 70s: absolutely straight long blond hair, with an equally straight part right down the middle of the head. Maybe it's one of Dr. Thaller's older daughters?? We know he has 7 kids, but we've only met Tristan, his (absolutely charming) youngest son, who's 20.
Anyway, the staple-gun acupuncture session ends, and I am sent to a bed in another treatment room where Kristina places acupuncture needles in all of the points that the doctor has treated. I lie there looking like a pincushion for a while and Liz does a nice sketch of me.
The rest of the day is pretty uneventful -- no shivering and a low fever. At one point Liz idly wonders whatever happened to Dr. Thaller's wife -- is she still alive? Still around? We've never heard any mention of her and it seems a missing presence in the whole PraxisKlinik story.
That night we treat ourselves to a dinner at the Gastätte Meyer, the only restaurant in Markt Berolzheim. It's very much a small-town joint -- only five tables in the main room, and the chef often comes out of the kitchen to chat with the guests. We're sitting there fixing to order when in walks Tristan (Dr. Thaller's son), with an elegant-looking woman around our age. He proudly says to us, "I'd like to introduce you to my mother!" As I reach to shake her hand, a light bulb of recognition goes off: this is the same woman as in the photograph this morning! We proceed to have a very nice conversation with her; she's a psychologist and Qi Gong (chi gung) instructor, and she's here teaching a Qi Gong seminar for other health practitioners. Her practice is in Augsburg (about an hour away) and she's obviously no longer with Herr Doctor (although he's never mentioned.)
Tristan is really keen to have me talk with her about Qi Gong -- and frankly, I am too: I took Qi Gong lessons many years ago and loved it. I've always felt much more easily-centered with moving meditations like that than with sitting meditation. We agree that I'll visit her office in Augsburg either next Tuesday or Wednesday. "You need something more than Qi Gong," she tells me. "For cancer patients, the best way to get the energy flowing properly is Tibetan Qi Gong."
I'm absolutely psyched -- I've felt like some kind of physical exercise that I do on my own has been the missing component of my treatment so far. And I'm glad to finally see the other half of the PraxisKlinik picture: I had seen some mention of Qi Gong on a previous version of their website, but nobody had ever said anything about it during our visits.
Wednesday, September 19, 2007
Knocked Out at the Klinik
Today is the first day back at the Fever Therapy. The shivering is intense, I throw out my back, the pain gets bad enough that Herr Doctor first gives me ear acupuncture (doesn't work), and then has to give me a dose of fentanyl (opiate pain reliever), which knocks me out *instantly*. The problem is that once I leave the Klinik I'm knocked out for the rest of the day and night -- I can barely put one foot in front of the other to walk home, and immediately fall asleep for 18 hours.
The good news is that my fever got to 104.9, the highest it's ever gotten in these treatments. Higher fever = more cancer cells dead.
The good news is that my fever got to 104.9, the highest it's ever gotten in these treatments. Higher fever = more cancer cells dead.
Tuesday, September 18, 2007
Tied to a Huge Lego Machine, and a Needle in the Prostate
So today the Dendritic Cell Therapy begins. The first step is "leukophoresis" -- they need to harvest a bunch of my white blood cells to send off to the lab. The lab will use them to manufacture Natural Killer cells and Dendritic cells (that's my current understanding of the process, anyway)
What this means today is that I have a 2" long needle plunged into each arm. My blood goes out one arm and into a really amazing-looking contraption: there are plastic tubes spread out over a diagram on the front panel of a machine with various pumps. I can see the blood going in and out of all the tubes -- it's interesting to imagine what all the stages are doing. Kristina (one of the nurses here) is competently adjusting all the parameters, but can't really explain it to me all that well because of the language barrier. All I have to do is watch one gauge and make sure it doesn't get below a certain level -- I squeeze my left fist repeatedly if it does (which increases the pressure of the blood coming out of my arm.)
At the top of the machine are several bags -- some for saline or other compounds that are being pumped into me, and one for the leukocytes (white blood cells), which are a pale orange. Kristina has a color chart she compares with it occasionally, and makes adjustments to the machine when the color is off.
At the end of the line the remaining blood comes back into my other arm. It's a pretty interesting process as long as I abstract from the needles in my arms -- Liz is more freaked out by it than I am.
The other "highlight" of the day is a direct result of giving the green light for the dendritic cell therapy. To mark the cancer cells, Herr Doktor wants to give me an injection of the Newcastle Disease Virus directly into my prostate, since that's where the bulk of my tumor is. I blithely assent, and soon I'm lying on a table with various fingers and needles aimed at my prostate. What I didn't count on was the pain -- I had no idea that there were pain receptors inside the prostate.
Now I know, believe me!
What this means today is that I have a 2" long needle plunged into each arm. My blood goes out one arm and into a really amazing-looking contraption: there are plastic tubes spread out over a diagram on the front panel of a machine with various pumps. I can see the blood going in and out of all the tubes -- it's interesting to imagine what all the stages are doing. Kristina (one of the nurses here) is competently adjusting all the parameters, but can't really explain it to me all that well because of the language barrier. All I have to do is watch one gauge and make sure it doesn't get below a certain level -- I squeeze my left fist repeatedly if it does (which increases the pressure of the blood coming out of my arm.)
At the top of the machine are several bags -- some for saline or other compounds that are being pumped into me, and one for the leukocytes (white blood cells), which are a pale orange. Kristina has a color chart she compares with it occasionally, and makes adjustments to the machine when the color is off.
At the end of the line the remaining blood comes back into my other arm. It's a pretty interesting process as long as I abstract from the needles in my arms -- Liz is more freaked out by it than I am.
The other "highlight" of the day is a direct result of giving the green light for the dendritic cell therapy. To mark the cancer cells, Herr Doktor wants to give me an injection of the Newcastle Disease Virus directly into my prostate, since that's where the bulk of my tumor is. I blithely assent, and soon I'm lying on a table with various fingers and needles aimed at my prostate. What I didn't count on was the pain -- I had no idea that there were pain receptors inside the prostate.
Now I know, believe me!
Monday, September 17, 2007
Under the Lindens
(lots of back-and-forth this week about the dendritic cell therapy. Liz says it best:)
"Here we are back in the hills of Bavaria. In our three week absence the trees have begun to turn, pears are now bulging suggestively, walnuts beginning to drop, and all the gardens now putting on their last hurrah. It looks like everyone has more tomatoes than they can eat, dahlias and sunflowers and roses all making a run for it, plums all over the walkways and pumpkins starting to show up by front doors. We have bright blue skies.
"It's a good thing, this country living... We did spend a lot of our weekend ruminating on the next step in Nick's treatments, as this is the moment where the big deal Dendritic Cell Therapy begins, and it is an expensive aspect of the whole process, and we are trying to put the money where it's really going to do some good, so Nick was hoping to get enough information to know this is the right thing to do. It has caused a good bit of anxiety and deliberation, mostly because we don't know exactly what we're doing, and one seldom does with this crazy cancer stuff. By the time this morning rolled around Nick was exhausted, sleepless and resistant to beginning the treatment that is scheduled today and so we decided to have a meeting with Dr Thaller to try to get a clear idea of the importance of this procedure. Herr Doctor was emphatic but controlled, he did his best to not be frustrated with us, and to try to find a way to explain. He sees the Dendritic Cell thing and the Newcastle Virus thing as a very vital combination and gave his reasoning. Nick still was concerned and wanted to be clear on this route, (it's no picnic, these treatments) and so, after awhile Doc suggested we go to the Linden trees. We hadn't been there yet, up on the hillside above the town, in the middle of a cherry orchard. There are seven really old Linden trees in a circle and a spring there in their shade and we had heard that the water is very good to drink and there was a log bench and it is just the loveliest spot you can imagine. Ancient and still and really perfect. So we drank the waters and sat in the shade and by the time the church bells below were bonging like crazy like they always do at noon I think the trepidation was past and the road got a little clearer and Nick saw his way to moving forward with this therapy at hand.
"We are on foot this time, not renting a car, and in this small town our rented "vacation" house is right on the edge by the fields with good views of the forests and hills. There is a tiny grocery store and we filled up a cart there with what we could, not too bad... decent bread and good looking fruit and some nice wine, even a few frozen fish entrees. Our house has six rooms, each one closed off from the next and all very neat and undecorated. Adequate in a handsome way. With internet, and plenty of eiderdown, stacks and stacks of bath towels for some reason. The landlords have that proper upstanding German look that is so often mixed with a real warmth. The sort of people that keep the shutters drawn when the sun is shining but tell us to call them by their first names. As we walked through the streets this morning everyone said good morning. I am often taken for German and get all kinds of commentary from passers by and so I guess I might get around to learning to speak at least!
"Well, meanwhile, I'll be spending a large part of my days helping Nick at the clinic, and I hope to get out and make some drawings of this place while there is such nice weather. These two weeks are going to zoom by."
Liz
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