THE DECISION FOR SURGERY
My malignant tumor had to be removed. It was determined via elastography in Munich that mine is a very aggressive cancer. The tumor is shedding stem cells and those cells will metastasize in other organs in a matter of time. They have already invaded several areas of my bones.
This analysis of my tumor cells was also the finding in the United States, but the treatment options were much more limited. Chemotherapy was the only course of management prescribed for my Stage IV cancer in the United States, because of the spread to my bones. Chemotherapy kills tumor cells but it does not kill tumor STEM cells. It is the tumor stem cells which are capable of metastasis, lodging and growing new tumors in other organs of the body. What is worse, chemotherapy would kill my own natural killer cells and would render my immune system incapable of fighting back. So in other words the standard of care in the U.S. has already given up on me. Chemo until it doesn’t work, then maybe a new drug, but all with a view to an unwinnable fight.
Here in the clinic where I am being treated, the focus of treatment is to strengthen and fortify the body’s immune system. The two doctors had agreed that my tumor needs to be removed because they felt the body was going to have an impossible job to mount a defense stronger than this active aggressive tumor. The finding in this clinic was that this tumor would continue to metastasize and would kill me. But they don’t give up that easily here! They recommended that their colleague Dr. Dr. Hans-Jurgen Bickmann would be the surgeon who could extricate this complicated tumor.
The plan was for Karen and me to travel to Siegen, Germany. On Monday November 21 we would meet my surgeon, Dr Bickmann, for the first time at 7 pm at his clinic. We had booked the ICE train to Frankfurt and then two regional trains to Siegen. By taking our journey in three legs we were able to get our tickets to Siegen for only 48 Euros for both of us. Having been warned that it could cost 200 Euros for both of us one way, that was a score.
On Monday I had my shortest clinic day ever. It was my first day since completing my 18th and last collection on November 17. I had a return of NK cells, and then we were on our way to catch the 11 am train.
It was a good plan, but it didn’t happen that way. We made it to the train station, where we had already scoped out exactly where our platform was, but there was no train. Our ICE train was 48 minutes late. No chance to make our connections.
As we boarded we chose to sit in one of the compartments with bench seats and a table between. We were approached by a young man who helped us with our one suitcase and then asked to join us. He wanted to practice his English and we were happy to have an interpreter to straighten out our train problem. Tobi did that and more. He didn’t actually live in Frankfurt, he told us, but a city outside of Frankfurt, called Siegen. No kidding. He spoke to the conductor on behalf of all of us. The conductor marked all of our tickets with the late departure info, and once in Frankfurt we were able to take a direct train to Siegen at no extra charge. So two legs instead of three, for 48 Euros total. Things work out.
I thought that the ICE train was the super-fast train that would go 150 mph in the open countryside. No, it went about as fast as we would drive in a car with American speed limits. Tobi explained that the rails for the fast trains have to be built completely differently, with extreme banks on the curves, for example. Of course that makes sense.
We ended up with a layover in Frankfurt, and we invited our new friend for a beer while we waited. Because it’s what you do here. And yes I had a few sips, too! German beer is processed under a Purity Law dating back hundreds of years. There are no chemicals, no additives.
Every region in Germany is known for its special beers. We learned that Siegen is where Krombacher beer is made. We also learned that Siegen is known for gray stone buildings, lots of trees, and lots of rain. Indeed it was a very gray city with off and on rain day and night. But lots of trees, and green grass even in November. Temps were in the 30’s while we were there.
MY SURGEON – DR. DR. H-J BICKMANN (Dr. Dr. is like saying MD, PhD)
We got to the clinic in time for our 7 pm appointment after all. But we waited 90 minutes before we were called. And then things got interesting.
Dr. Dr. Bickmann was a breath of fresh air and energy. He came into the hallway to meet us, shook my hand, welcomed Karen to join us, and ushered us into his office where he had my paperwork out on the desk and clearly knew all about my case. He told me everything that would happen the next day, and he advised that I should stay in the clinic overnight in case of complication or discomfort. I would need a drain, he said. When he wanted to describe how the drain works, he looked up the translation on his computer so he could tell us in English: negative pressure. He was thorough and he wanted to be sure we understood what he wanted to accomplish.
And then he wanted to have his first look at my tumor under ultrasound.
I was beside myself with curiosity. This primary tumor was first measured at 3.0 cm x 3.0 cm back on June 9 and July 1. It had been six weeks now since October 10, when Prof. Dr. Staehler had measured the same tumor at 25mm x 15mm (2.5 cm x 1.5 cm). What was the size now, 6 weeks later, when it would finally be taken out?
Everyone on my medical team in the United States and here in Germany had expressed how intricate it would be to remove this tumor. In the United States there was no expectation that it could be done. A complete mastectomy was the only procedure discussed. If my cancer had not already metastasized then I might have undergone chemotherapy, mastectomy, radiation, more chemotherapy, and hormone blockers for 5 years.
In Munich my doctors think differently. But they, like the U.S. team, found my tumor to be extremely challenging, irregular, aggressive, and attached to the skin. My German doctors felt that the tumor had to be removed in order for me to survive. They chose Dr. Bickmann as the specialist who could figure out how to extricate the edges and preserve whatever skin and breast tissue could be saved.
This doctor used an apparatus to project his ultrasound images onto the wall like a movie for us to see. It was fascinating in such large detail. We were all silent as Dr. Bickmann moved his instrument and studied everything for minutes. Then he pointed things out to us. He mumbled in German, he thought out loud, he explained to us in simple English. He showed where the tumor was attached, where it was pulling, where it was sending out tentacles, where it was interfering, where it was hiding.
THE FINAL MEASUREMENT
And then he measured. He moved the ultrasound head and clicked the cursor. A point appeared on the screen at the far left of the tumor. Then he went across and clicked again. A line appeared, and a number. .7 cm. I couldn’t be sure what I saw on the wall. Then he went to the bottom and clicked, and then to the top. The line appeared and the measurement. 1 cm. We were watching on a big screen and everything looked big, so the small numbers were a surprise to the eye as well as to the brain.
I wanted to ask Karen, “did you see what I saw?” but I lay still and we both were silent, letting the doctor think.
When I came to Munich on September 18, I was proud that my tumor had shrunk from 9.0 sq cm to 6.0 sq cm. The original measurement of 3.0 x 3.0 cm had shrunk to 3.0 cm x 2.0 cm without drugs of any kind, only diet to thank.
In Munich, Dr Staehler had measured the same tumor on October 10 and found it to be 2.5 cm x 1.5 cm, also without drug intervention. That is 3.75 sq cm. I had been having collections at that time, but my returns and vaccines did not start until only October 10. Now, after 6 more weeks during which I had received returns and vaccines in addition to my good diet, the tumor was just measured at 1 cm x .7 cm. Less than 1 sq cm. Unbelievable.
Poor Dr. Bickmann, I asked if he was measuring the primary tumor. He was very patient. Yes. This is the size of the tumor that he would be removing tomorrow. It is indeed smaller still than what it was. By a lot. At this point the credit was not only to diet, it was also a function of 6 weeks of returns of fortified NK cells to my body, plus vaccines made from my own killed tumor stem cells to help my killer cells recognize cancer stem cells for the invaders that they are. Well, something is working.
Now Dr. Bickmann needed to study the current state of the tumor in order to finalize how he would go about removing it. He had studied the scans already. And he knew that his colleagues were counting on him to do what they feared they could not do. Could he extricate this complicated tumor and leave the breast intact? How much of the attached skin would he have to remove? Karen and I were holding our breath. He was busy with the ultrasound machine. He took his time.
And then Dr. Dr. Bickmann said the coolest thing. I’ll never forget it: He said “I see a way.”
I have never felt in better hands.
Dr. Bickmann assured us that there would be no need to remove the breast. Nor would any lymph nodes need to be disturbed. The lymph nodes were healthy. It would be a delicate operation, but he would be removing the tumor tomorrow, and if all went well he would be able to release the tumor and remove only the tumor and a small amount of skin.
Karen and I got back to the hotel about 11 p.m. I would need to report to the clinic at 8 a.m. the next morning, and my operation was scheduled for 9 a.m. Our hotel room was very comfortable, but it was a tough night for sleeping.
One interesting difference between pre-surgery in the U.S. And here in Siegen is that the food and water restriction is more lenient with this clinic. No food for 6 hours prior to surgery, so that played out exactly as it would at home. But the water restriction was much more to my liking. No water for 3 hours prior to surgery in this clinic. That was very beneficial to me, as I did want water during the night and had my last water about 5 a.m., four hours before surgery. I was quite comfortable with that. We got up about 6:30 and Karen went down to breakfast. No food or water for me.
We took a taxi to the clinic and were quickly taken to the recovery room where I would be brought. My nurse was as friendly as the doctor had been. She introduced herself and indicated which bed would be mine. Her English was limited, but she beamed and said, “and this is the best bed!”
The anesthesiologist came in to get my information and to ready me for her part in the procedure.
Just before 9 a.m., I was taken to the changing room in the surgical suite, and from there to the operating room where a team was waiting. Believe it or not, my doctor welcomed me and hugged me. Then he left and my nurse introduced me. Each person took just a second to smile and say hello. The anesthesiologist came immediately to my head as I got onto the three-piece table (which I understand is standard operating room furniture). The room was cold, but a heated blanket was put over me.
The anesthesiologist put the IV in my right forearm, and she said “that is the only pain you will feel.” She started the drip. I remember my nurse taking my left hand at one point. I was asked how I was doing, and all was well. I truly did not feel nervous or afraid in the company of these professionals, in the hands of this surgeon who had seen the way to excise this tumor. Boy, was I ready for that.
The nurse came and told Karen that everything had gone well. I was back in the recovery room about 10:30. I had a lot of pain as I first came out of anesthesia, and I was teeth-chattering cold. A heated blanket appeared immediately, and the IV pain meds were started. It took some time to warm up and feel comfortable, but that is the only pain medicine I have needed.
I’m not tough by any means! I thankfully got ahead of the pain in the recovery room and I never needed any pain meds since that one infusion. I did what everyone had advised me to do, and I did not let the pain get a foothold. So I would advise anyone else the same way. Get pain meds immediately as soon as you feel uncomfortable after surgery! That decision helped me immensely.
Then I was able to take advantage of the absence of pain. I got moving as soon as I felt good. I was quite active in the Recovery Room, sitting up, exercising and interacting with people in such a way as to avoid lying still. I’m sure my brain was not very smart, but I had good people around me to keep me safe. Karen helped me move and exercise in useful ways. I started pendulum stretches as soon as I could stand. When I was stronger I started walking the halls. All in all, I was completely able to avoid becoming stiff and sore!
OVERNIGHT IN THE CLINIC
Karen was not allowed to stay overnight with me. The change from day shift to night shift happened about 8 p.m., and we all decided that Karen could take a taxi back to the hotel and that I would be able to take a taxi by myself the next morning. Unlike being in the United States, our phones were not of use to us in Germany, so plans had to be made and kept. If there had been a problem and should Karen need to come back to the clinic, I would have to have the night nurse call the hotel. Remember those days, before cell phones?
During my stay overnight in the clinic, I was asked every two hours if I needed pain meds and I simply did not.
My night nurse spoke almost no English, but she truly wanted to be helpful. I was on a mission to move and to do things for myself, and she could not understand why I didn’t want help. I was certain that the pain would be coming back with a vengence, and I planned to ask for meds as soon as I felt pain.
The staff had told me that Dr. Bickmann makes surprise visits overnight in the clinic, they never know when he might show up. Indeed Dr. Bickmann paid me a visit about 11:15 p.m. He was surprised that I had not taken any more meds. I told him that I felt fine and did not need meds, and he assured me that at any time during the night I could have them. I still had my IV in, which is standard procedure everywhere in case an emergency develops, so IV pain meds would be quick and effective, as they had been after surgery. It would be the same medicine. I felt safe and comfortable.
Dr. Bickmann checked my wound again and said that it looked very good. He reassured me that everything had gone well in the operation and he had been able to do exactly what he set out to do. He had been able to release the tumor from most of the attachment points, and where it was attached to the skin he had removed the skin as well. There were layers of stitches underneath which would dissolve, and the outer stitches would be taken out in Dr. Kuebler’s clinic in 10 days. He checked the drainage in the collection flask and pronounced that the wound was doing very well. He said the drain could probably come out in two or three days.
I believe that the knowledge that I could have pain meds whenever I wanted them, coupled with the doctor’s assertion that everything had gone well and my wound looked very good, was exactly the comfort I needed overnight. That kind of security goes a long way to beating the pain rap.
Approximately every 2 hours the night nurse came in to take my blood pressure and heart rate, and to record the amount of drainage from my wound. So that served as incentive for me to get up and walk around a bit, to use the bathroom, to refill my two big water glasses one at a time, to do my pendulum stretch exercises, and then to get back into bed. Each time I got up I felt stiff and uncomfortable for a few minutes and then gradually came back to myself. The only real inconvenience was the collection flask for the drain in my chest. I had to hold it in one hand at all times when I was out of bed. It was simply a nuisance and I was already counting the days to being rid of it.
BACK TO MUNICH
On Wednesday morning Dr. Bickmann came in promptly at 7 o’clock. I was thoroughly checked over and he once again was happy with how I looked. He changed my dressing but I looked away and did not ask to see my surgery site. I was hungry and eager to hit the road, but I didn’t want to see what I looked like. The doctor pronounced me fit to travel. There was about 30 ml of blood in the collection flask at that point, and I was instructed that the blood would taper off and then there would be clear fluid, and then when all had stabilized the drain could come out.
Dr. Bickmann gave me two pain pills with codeine. He advised that I should take them for the travel. And he wished me well, and discharged me. The front desk called a taxi.
I was treated at the surgical clinic in Siegen without paying a single cent. The two clinics had arranged that bills would be sent to Munich and I would be paying all of my expenses there.
I took a taxi to the hotel, and Karen and I took advantage of the full breakfast buffet which was included in the price. I was starving! I ate enough to last me all day, and then brought an orange and an apple for the train ride back to Munich. We talked about whether I should take one of the pain pills with codeine that Dr. Bickmann had given me. I had taken narcotic pain pills back in May when I had costochondritis, and did not do well on them at all. I was not in pain as we ate breakfast in Siegen. But the prospect of a day on the trains was somewhat daunting. We decided that I should take one pill with breakfast, so that’s what I did. I put the other pill in my pocket.
Back in our hotel room, I took a one-handed shower, still holding the collection from the drain. What do people do who have two and three drains? I had all I could do to keep track of one, along with keeping my bandages dry. It made for very messy hair washing, but no matter. That shower was worth all the effort. People talk about how the first shower is such a victory, and that is exactly how it felt.
We had a very simple job of packing, having brought only one small suitcase for both of us. We took another taxi back to the train station, and boarded our 2-hr train for an easy trip to Frankfurt.
In Frankfurt we boarded our train to Munich, but we had not reserved seats and the second class passengers were clearly overbooked. We joined a crowd of standing passengers. This was not going to be good for me, so I set out on a mission to find seats for us while Karen stayed with the suitcase. Several cars later I did find two seats in the very back, and I took the chance of putting my coat on one and my sweater on the other to “reserve” them. Then I went back to get Karen. She had a devil of a time trying to wedge the suitcase down the aisles and through the connectors with people standing in the aisles and even sitting in the wheel wells. But we made it. And then we had seats for the long ride back to Munich.
I don’t know whether I needed that pain pill, but it didn’t make me sick and I’m glad I took it. I have never taken the other one. We arrived back at our apartment about 7 p.m. I was due at Dr. Kuebler’s clinic the next morning.
BACK TO CLINIC ON THANKSGIVING DAY
There was no interruption to my scheduled treatment in Munich. I had my regular infusion of NK cells and my vaccine shots before going to Siegen, and I had my next regularly scheduled infusion and vaccines the day after I returned from Siegen. That was Thursday, Thanksgiving Day in the U.S. Not a holiday in Germany, though, and it was a normal clinic day for all the patients.
Dr. Kuebler changed my dressing and admired his colleague’s work. I still wasn’t ready to see it. Dr. Kuebler said the drainage was finished and the wound looked perfect, so the drain could come out. That hurts, by the way, but it was so wonderful to get it out! I knew that the drain leaves a hole and I wasn’t ready to see that either. The doctor pressed a special wad of gauze into the hole and applied a new bandage over the wound which held it in place. Bye bye drain, after only two days.
Dr. Keubler spoke to me as he examined me. He said that he had spoken with Dr. Bickmann. The operation had gone smoothly, the tumor was cleanly removed and would not be shedding further stem cells. Therefore they felt that they had averted future metastasis. But the doctor also said much more than that. He told me that the removal of that tumor was a miracle. He told me that Dr. Bickmann was the only person who could have done such a perfect job of it. And he told me that my “starvation” diet (he means anti-sugar) was the key to shrinking this tumor and making it removable. He remarked that the final size of the tumor was less than 1 cm.
And as I listened I felt the strength of my choices.
I got this.