I’M DOING SO WELL THAT I GET TO HAVE SURGERY, Part 2 –
The Tumor Chronicles
SURGERY – MY NEXT BIG STEP
I am scheduled for surgery on Tuesday, November 22. I will be traveling north to Frankfurt, and from there to Siegen, Germany, to the clinic of a specialist. The multi-focal tumor is so close to the surface that it is attached to the skin, making for a delicate operation. The skin may have to go, but no promises are made as to how extensive the surgery will have to be. This is always the case with cancer, and with many other surgeries as well. No one really knows the extent of what will be found.
Here the cell biologists look from their perspective, and the doctors also look at thermography and elastography. That analysis gives much information about the topography of the tumor along with insight into the active state of the tissues, including blood flow as well as cellular activity. My tumor has a big blood supply, and it is “hot” on the diagnostic. That is not good, it is more difficult to work with.
My cancer is aggressive. That fact had been determined by cellular analysis in the lab at home, and it is confirmed here as well. But that is where the agreement with the standard of care ends. At home I would have had weeks and weeks of chemotherapy before having surgery. That would be in an effort to shrink the tumor and make it easier to remove. No other means of shrinking the tumor would be explored at home. Of course the unintended but well known side effect is that my immune system would be damaged and severely weakened by that same chemotherapy. I would be heading to surgery weaker than ever.
Being diagnosed Stage IV changes my prospects for surgery at home. The standard of care believes that removing the tumor would not help me live longer because my cancer has already metastasized to my bones. Therefore surgery is not scheduled.
By contrast, here in Germany at Labor-Praxisklinik my doctors feel that the tumor should be removed. Metastasis does not alter that fact, because they are helping my body to clear the metastasis. Here the plan of attack is to begin by fortifying my immune system and making my overall health stronger. Now that I am doing so well, they feel it is time to have this tumor removed.
At home, before my Stage IV diagnosis, surgeons planned a full mastectomy of my left breast. During surgery my sentinel lymph nodes would also have been removed and examined for cancer while I was under anesthesia. Then, if any two nodes were positive at that time, an axillary would have been performed, meaning all of the lymph nodes under my left arm would also have been removed.
But here’s the thing now: those enlarged lymph nodes, which were biopsied at home and found to be malignant, have now returned to normal size. They are now completely “cool and clear” on elastography. In other words, they have been doing their job. They have been clearing cancer cells, and the tide is turned in my favor now. Once malignant, always malignant? Do you think that if you have cancer in your lymph nodes you should take them out asap? That’s not how I think, and that is not how people think in this resourceful and optimistic clinic. We clear cancer out. My lymph nodes are heroic. My body is working.
The lymph system is the drainage system of the body. My lymph nodes are doing their job, and none of them need to be removed. So now I have to ask the surgeon: what do you do about that nasty little tumor marker “clip” which was inserted into an enlarged node during my first set of biopsies? I will ask that question. It is the foreign body placed there by modern medicine that I want out. I need my lymph nodes and want to save them.
The doctors here hate biopsies. Biopsies spread tumor stem cells. The visiting elastography doctor asked me in our interview before the procedure, “And, no biopsies?” When I told him that part of my history he was dismayed. His reaction was identical to Dr. Kuebler’s reaction. They wince, they tsk tsk, they shake their heads. They deal with it all the time. The standard of care in Germany is pretty much the same as at home. In the U.S., the doctors and insurance companies would give no credence at all to the diagnosis of cancer if there were no biopsy. That is the standard of care.
It is assumed at home that my cancer is not curable and that surgery will not lengthen my life. If I were undergoing standard of care treatment at home right now I would be on chemotherapy drugs for the rest of my life. When one drug stops working, as it eventually does, then another drug would be started in hopes of restraining the cancer for some time longer. There are women with Stage IV breast cancer who live ten years or more under this care. I am taking a chance on something completely different. I am betting – a lot – that I can live cancer free. That is the option that is not offered to me at this time in my cancer treatment center at home.
At home I was being treated at a fairly new breast cancer center only half an hour from my home. The center has a cheerful look, a positive feel, and caring professionals all around. During testing my hope was that my cancer would be uncomplicated enough that I could continue to stay this close to home for my treatment. I felt in very good hands. I wanted Karen or Heather to be able to go to treatments with me. At that time going “far away” for treatment meant going to Boston, just over an hour away from my new home. How ironic! Now here I am in Germany. And I fully believe in what I am doing, so, as homesick as I am, there is nowhere I would rather be.
MY CONDITION NOW
My prognosis here is opposite to anything I have been told at home. It is assumed here at Labor-Praxisklinik that my immune system can be strengthened and incited to beat this cancer. I will have to be vigilant in the future, but I can be treated and cured without carcinogenic agents, and I can live cancer free.
During my first three weeks here, while I was having collections but no returns, I slept a lot and had little energy. I did not feel ill but of course I was sick when I came and I was additionally tired and weak from the procedures. The collections do not damage the immune system, but the body is being taxed by the process. It takes three weeks to culture the returns which do the real work of fighting the disease. My first collection was Monday, September 19. I began getting returns on Monday, October 10, three weeks after my first collection. It took a few returns before I started to feel strength returning, but by now, at 11 returns and counting, I am unstoppable. I also receive personalized natural vaccines made from my own tumor stem cells, which stimulate my immune system to recognize and kill my cancer cells. More on that in a later post.
I have now been here exactly two months. The process of strengthening my immune system is well underway. A total of 18 collections and 18 returns will be administered. As of this writing I am in my last week of collections. My last collection will be on Thursday, November 17. I will receive my 13th return on November 21, just before I go to Siegen for surgery. I feel great! Anyone who knows me can see that I’m stronger, my color is better, I am simply more myself.
But something else is happening as well. My tumor is still shrinking. I have to tell you the story of the sizing of my tumor. And then later I will have to tell you how I did it!
TUMOR SIZING BY MY ONCOLOGIST
JULY 1 – First meeting
I first met my oncologist on Friday, July 1. He is about my age, and he has a lot of experience with malignant tumors. He explained that he measures the tumor at every appointment, and he does that in a very specific way. I had come away from my breast biopsy with a measurement taken by ultrasound, and this doctor had that report, but he has his own system and he took several minutes each visit to measure the tumor himself. He was religious about measuring, carefully and in the same way each time, and I saw him write that information on each report. He has been taking such measurements for many years, and I trust his numbers to tell the relative story over my three appointments with him.
On that first visit, he confirmed that he agreed with the ultrasound and spoke of the tumor as 3 cm. Not small, of course, but he was reassuring in how “normal” that was. At that time we were all optimistic that the standard course of chemo, then mastectomy, then radiation, and then possibly more chemo, along with 5 years of hormone blockers, would “cure” my cancer. This was a new world for me, and it made me feel sick. And the more I read, the more I doubted that simplistic result. That was the cognitive dissonance which had been going on in my brain since June. It had already begun to take me in other directions.
I had not made any decisions about my treatment at that time, and we talked extensively at that meeting about my hope to be included in a clinical trial, specifically one which my oncologist himself was leading. The doctor also wrote a prescription for Femara, a hormone blocker which I was expected to begin immediately and take for 5 years, with or without the clinical trial. Heather and Karen were eager for me to begin treatment. But I did not fill the prescription.
Staging of my tumor was not complete at that point. The only treatment I had received since May was my own drastic change in diet. I had eliminated sugar and switched to organic whole foods. A sugar addict my whole life, I made these changes gradually over the course of a month or so. Immediately after the onset of severe costochondritis on May 17, I started to see the poison in sugar. I did not quit sugar all at once, but by the time this meeting took place on July 1, I ate almost no sugar except for the natural sugars in whole real foods. Different people have different ways of doing better for themselves. Many people would have sworn off sugar all at once. Do it your own way. The important thing is to get there in such a way as to become comfortable with your life without sugar. I do not miss it anymore. I have been here in Munich for two months, with wonderful bakeries and sweets on every corner, and I will complete my treatment without even one bite. I’ve seen how much diet can do. For me there is no going back to unhealthy ways.
JULY 29 – Second Meeting
The next recorded measurement of my primary tumor by the same doctor was July 29. I had spoken with him several times during the month of tests, and most recently just three days before when he confirmed that there was cancer in my sternum. Although the meeting was difficult and not at all optimistic, he did say one positive thing, which was a source of strength for me. He said “your tumor is not growing, so that’s a good sign.” Looking back now with measurements in hand, I think that was a caring and prudent thing to say. I took it as proof that my diet, the one thing I could control in this maelstrom, was working.
I had begun making better dietary choices back in May, but by July I was on a personal mission. I had not taken any conventional drugs for cancer, but I was meticulously treating every meal as medicine. I had met with a herbalist and with a mycologist, and was taking several new supplements. My costochondritis was also improving by then. I was back to teaching and training, writing and working around the house. I was feeling so much better! And as time went on, with my success with diet and my ongoing research into alternatives, the tumor sizing itself became a big factor in my thinking.
More tests, more bad results! The tests were more and more invasive and the results were more and more dire. I believe that the reason I remained so optimistic was simply that I was feeling better and better. Everything about what I was doing with my diet was working for me. By now I had been eating organic and without sugar for two full months. I can’t describe how healing it felt to open the refrigerator and let my body respond with what nutrition it wanted to eat now. I will blog about food separately because it is pivotal and critical to my wellbeing, during testing and through to this day.
Heather and Karen had been pressuring me to start the hormone blocker which had been prescribed on July 1, but I still had not filled the prescription. I had to know about nutrition. By then I had a perfect faith that food was effective medicine and that I was on to something which could save my life and my future health. I did not want to confound my results with Femara.
In early August I did as I was scheduled to do and attended the “chemo teach” class at the oncology clinic. I did speak several times with the providers of the very expensive chemotherapy drug Ibrance which I was scheduled to begin immediately. I went through the process of applying for assistance to reduce the $830/month copay on Ibrance, and indeed my final out of pocket price for the drug would have been only $10/month for the first year. But when it was to be mailed I refused the shipment.
My daughter Heather was especially distressed that I was not beginning treatment. She told me she feared that every day that went by was a day of damage being done and that I needed to begin treatment while I was researching. I tried to talk with her, and with Karen, about how differently I saw the situation. That is not what is happening, I said. The tumor is not growing, I said. I believe that every day that goes by, with me treating my body in this new and much more loving way, is proving to be a day of improvement and gradual return to health.
Karen picked up the Femara prescription for me. On August 14 my agility students from up north gave me a terrific “pre-chemo party,” and we had a lovely afternoon with friends. At the party I took my first pill. I was fairly compliant with taking that pill once a day for the couple weeks before seeing the oncologist again on September 2. I skipped my pill a couple of days each week. But during those couple of weeks my personal plans for my treatment changed drastically.
During late August I made my decision to come to Germany and not undergo traditional treatment at home. Now things happened quickly as we scrambled to make plans for Karen and me to make the trip and for Heather to take over our household. I liquidated retirement funds to make the first round of treatment possible. I did not know how I would afford ongoing treatment, but I felt compelled to go forward and embrace the treatment that I believed could make me well. I did not want to settle for managing my cancer, I wanted to fight it with my own immune system. Heather and Karen lent full support. I do not know if they were fully in agreement, but that does not matter. They did the right thing and were happy for me to have made my choice. We made our plans for me to be admitted to this clinic, and for Karen to escort me here and be with me as I started treatment and learned my way around this big foreign city.
When I met with my PCP to discuss my decision and ask her to write to the oncologist, I felt undeterred by the fact that she did not see this departure from the standard of care to be a good idea. When I went to my next scheduled oncology appointment, on September 2, that doctor was clearly also not in support of my decision, but he did not behave in the overall supportive way that my PCP chose to behave. He was dismissive and ignored the elephant in the room. He did not want to talk about it.
SEPTEMBER 2 – Third Meeting
It is one thing to disagree, as my PCP does. But she had pointed questions, such as “is this doctor affiliated with a university,” and she wrote down specifics so as to look up this German immunologist, his clinic, and his credentials. My oncologist, by contrast, has turned away from any interest in my case. I know he respects my brain, because we previously had interesting conversations about my possibilities under his plan. He was forthcoming with opinion and follow-up about various clinical trials and new drugs. But he has no interest in me now that I refuse to accept the standard plan of passive resistance that he offers. He has no longterm hope for me, and has honestly said so. But now that I want to do more than that he has disconnected.
He measured my tumor in his exacting way. I appreciate his systematic approach to every detail as he does that work. I trust his measurements. Karen and Heather were there with me. Although we had all been made uncomfortable by his failure to address the elephant, we were all interested in what he would find by way of my tumor size. He measured just as he always did. He put the instrument down and picked up the pen to write down his findings. He studied his papers and did not write. He picked up the special ruler once again, and systematically went through the entire measuring process a second time. It’s an uncomfortable process, so I know every detail. He went through every piece of his ritual again, and used the slide ruler again. Karen said later that she could not see the numbers, but could see that the slide closed below the 3 cm mark. And I said later that I could shoot myself for not daring to ask, for the first time, “what is the measurement?!”
He had never told us the measurements, and this third time was not different. At the last appointment he had assured me that my tumor was not growing. Now this time he recorded the measurements without saying anything about them. I already knew. No way he would have remeasured if the measurements had been larger, or even the same. But I’m grateful that he is scientist enough to remeasure. That has only made me more sure of myself in my choices.
I knew I was doing the right things to help myself. I knew that my diet was working because of how I felt. I dearly wanted to know the measurements which he had found just then, but I didn’t quite have the courage to ask, nor did my companions. That is the power of the doctor. He controls the atmosphere in the room. One thing I remember very clearly. I actually felt an unjustified but smug sense of moral superiority in watching this meeting unfold. The oncologist couldn’t control my choices, and clearly he was not happy for some improvement that the measurements indicated, but he was exercising the power of the nocebo effect just the same. I felt it, but I swear it was not working against me, it was empowering me. I can’t explain that, but I was all the stronger for my clear perception that he did not want me to be successful.
He sat and looked at me and said, quoting as best I can, “IF you choose to come back and see me, we should administer the Zometa shot for your bones, because cancer has a habit of just chewing up the bones,” and he made the chewing motion with his hand as he spoke. I assured him that I did want to come back for the shot in December when I returned home.
I still do feel that way. I’m not of closed mind. I had read the articles on Zometa and I believe that drug will be of benefit to me. I wish that my oncologist were of a more open mindset. He has chosen to refer to my metastasis as “sad,” which is a defeatist emotion. And he has chosen now to behave in a very demoralizing way about my treatment choice.
Many of the world’s great medical discoveries were accidental, and therefore would have been missed if the scientists were not open minded. Being closed minded is very poor science and very poor medicine. We’ll see what happens when I come home, and I will let you know.
READING THE MEASUREMENT REPORTS
I did not know the exact tumor measurements until I obtained all of the official reports and discs in order to bring the materials to Germany with me. I had to piece this tumor story together myself by using the dates and the notes on the oncologist’s reports. Although he gave me a general feeling at each meeting, he did not tell me the measurements.
On September 15 Heather drove me to pick up all of these materials at various locations. When we got to the oncology clinic, I picked up the packet of information from the front desk. I ripped it open as soon as I got outside. I poured through the information sitting on the grass with my daughter Heather who was driving me here and there to pick up various reports and discs. The information had to be there, and it was. There was no mention of the measurements in the doctor’s notes, but the numbers were there in a section marked “breast” in each standardized report form. I collected the three different sheets which contained that section with the three different tumor measurements.
July 1: 3.0 cm x 3.0 cm. This is almost exactly the same as the biopsy report.
July 29: 3.0 cm x 2.8 cm. I agree with the doctor’s telling me simply that the tumor was “not growing.” It would have been wrong to be jumping up and down over a tumor which had shrunk by only .2 cm in one direction. That was .2 cm in less than one month, so it was good news, but certainly my optimism should not be based solely on that.
September 2: 3.0 cm x 2.0 cm. In only two months from the original measurement, the tumor now had shrunk by fully a third. That is amazing. No wonder he measured twice!
When I read it all out loud, Heather and I rejoiced. Sitting on the green grass lawn of the clinic in the September sunshine, it was a beautiful day in every way. Unbelievable, and wonderful! I never dared hope for such a drastic improvement so quickly.
We were on a high as we started off to the next hospital. And suddenly, with Heather driving, I had a meltdown and cried my heart out. I used an EFT “tapping” rant, a very helpful coping mechanism for heartbreaking difficulty. Run an internet search on EFT if you are interested. It helped me immensely. My Buddhist daughter has helped me understand this technique. I had tried to understand it, but I had never needed it before. Now I told her I needed to tap and thankfully she helped me begin with the positive affirmation that the doctor did wish he could cure me. Then it just came pouring out through sobs at the top of my voice. I couldn’t hold it in. Didn’t he want to know what I was doing? How I could have such success without drugs? All my personal efforts meant nothing to him! No matter how hard I was working for my health, he didn’t care to know?! He had to know how important that measurement would be to my optimism! To my very ability to get well!
And the deepest cut of all, the real source of all my tears: How could he be so heartless?
I still can’t deal with this concealment of information. My oncologist chose to be disinterested in my obvious improvement. Nothing I can think serves to rationalize that terrible decision by a doctor who was hired to help me do well. I will have another meeting with him in December. I will get my first Zometa shot then. The tumor will have been removed by then. If it were there for him to measure, I would ask plainly and directly for the numbers. I know how I plan to meet him the next time, and I will have my act together and handle myself calmly, as the educated consumer who wants a Zometa shot for her bones. But it’s doubtful that the bridge can be mended. My oncologist demonstrated a vested interest in my NOT doing well.
MY FIRST ELASTOGRAPHY
The elastography readings here at Labor-Praxisklinik are done by Prof. Dr. E. Staehler, an endocrinologist and breast specialist. He comes about every three weeks. I was the first appointment of the day with Prof. Staehler on Monday, October 10. He and Dr. Kuebler hovered over the machine, deep in conversation about my findings. As they talked, Dr. Staehler manipulated the head and the controls with the intimate dexterity of someone who uses the machine with unconscious competence, automatically pinpointing whatever area and information they wanted to address. They shared with me occasionally, pointing out the good news and the bad news of the findings. The machine looks like an ultrasound machine, but the pictures it presents are incredibly detailed in amazing ways, using numbers and color to create a topography of the breast and a full picture of what is going on at the cellular level.
As the doctors showed me the irregularities of the tumor, the red hot aggressiveness of it and the infiltration up into the skin, they were very clear with me about needing to have it removed in order to achieve a full recovery. They decided there and then that Dr. Bickmann in Siegan was the specialist who should do that, but that it could not be done until I was strong enough to travel and undergo the procedure.
My lymph nodes were unquestionably enlarged and malignant in June. But on October 10, the entire axillary area under the left arm was completely normal, not enlarged and not inflamed. Perfectly clear to both doctors that the area has returned to normal and does not need surgical intervention. In contrast to the reds of my tumor, the lymph system was cool and blue.
The best news is that my primary tumor is continuing to shrink. Back on July 1 the area of the tumor was 9.0 sq cm. On October 10 the official measurement was 2.5 cm x 1.5 cm., an area of 3.75 sq cm. That is more than hopeful, that is a major victory!
From 9.0 sq cm down to 3.75 sq cm. My tumor has shrunk by more than half. And I can’t describe how motivating it is to be here with doctors who celebrate that fact by congratulating me on my diet as well as continuing to build my body’s defenses. I am delighted at my progress, but I am no longer surprised. I have learned a lot. I am not the patient I used to be.
Now, more than a month after that elastography, I will be going on that next journey. I will complete my 18th and last collection on Thursday, November 17. On Monday, November 21, I will receive my 13th return. Karen and I will travel that day, via three trains, up to Siegen. We have a 7 p.m. appointment with the surgeon that evening before my surgery on Tuesday, November 22. We will spend that night in Siegen and make the return trip on Wednesday.
On Thursday, November 24, I will be back in Labor-Praxisklinik for my 14th return. That is Thanksgiving day in the United States, but not a holiday in Germany. We will get the chance to speak with our families after a long day in the clinic. We are 6 hours ahead of our loved ones on the east coast, so our work day will be done by the time they are having Thanksgiving dinner.
I am forever thankful for the people here who are making me well, of course. But I’m equally grateful for my best friend Karen who has been with me every step of the way, for my daughter Heather who is taking care of the complexities of our home and our animals while we are gone. And I am deeply grateful for the many many students, friends, and strangers at home who are helping me in every way to be here and to recover fully from Stage IV breast cancer. We are on to the next step of the journey. I feel strong and well. I am now doing so well that I get to have surgery. I’ll talk to you soon!