I’M DOING SO WELL THAT I GET TO HAVE SURGERY, Part 1 – Staging of My Cancer
Blogs are a journey, and this one has received a lot of requests for more information and more details about the beginning of this journey. I decided that now is the time to go back to the beginning and expand upon previous notes which point to details of my experience so far. To my best recollection, this is the story which leads to my seeking cancer treatment here in Germany. That said, it’s a blog, not a scientific document, and I’m a cancer patient, not an expert.
This post begins with notice about my upcoming surgery which is scheduled in November. My path through cancer staging in the U.S. explains how this surgery represents such a win. So this blog post revolves around the process of staging my cancer here at home.
In the United States, before I was diagnosed Stage IV, the original treatment plan had been to perform a complete mastectomy of the left breast and to remove some or all of the axillary lymph nodes as well. That decision was abandoned when I was diagnosed Stage IV because it is assumed in the U.S. that my cancer cannot be cured and that surgery will not help me live longer. So being ineligible for surgery was one of the negative outcomes of my Stage IV diagnosis.
Except that it doesn’t look that way now. It is looking like a benefit now, perhaps a godsend.
My Cancer Diagnosis
Some students and people close to me could tell, and a few of them said so, that I did not look well. This had been going on for at least six months. The winter of 2015-16 was tough on me. The most annoying was my best friend Karen. It seemed she was continually adamant that I looked awful and was not myself. I was working hard and I was still moving to a new home. I had a lot going on.
I found a lump sometime during the move, and finally in May after teaching a two-day seminar I told Karen about it. She did not like it and said that it had to be examined. I said that I would call my doctor up north and try to move up my annual appointment. Karen said “No. You call right away. This is how that conversation goes: I found a lump in my left breast. I need to have a diagnostic mammogram scheduled as soon as possible.”
As obvious as that logic sounds, it was a shock to me that Karen thought it was urgent. I have had several “suspicious” lumps and findings on mammograms in the past, the most recent being two years prior in the same area of the same breast, and they never amounted to anything. Always in the past a lump was declared benign by the doctor reading the expensive diagnostic ultrasound which I could ill afford. I have dense and fibrous breast tissue, I truly was used to suspicious readings. But at a deeper level I had been concerned about this because I had been so tired for so long. So even though I thought Karen was being dramatic I did exactly as she said, and the appointment was made.
My chest had been sore with a case of costochondritis, which I had to look up when Karen diagnosed it. Never had that before. Inflammation of the cartilage attaching ribs to sternum, resulting in chest wall pain. I started ibuprofen and was doing fine, as it was no more than a mild nuisance. We assumed it would subside when I took a long weekend off to see family in Chicago.
I flew to Chicago for my niece’s graduation, and had a great time with family. I told my sister that I had a lump and was having a diagnostic. Her friend had just been through a cancer scare which was pronounced Stage 0. Neither of us talked about it further than that. But after I got home on Monday, May 16, I went about my agility training life and moved a lot of equipment into a training ring for a class which was to start the next day. Big mistake. I woke up Tuesday May 17 with such a severe case of costochondritis that I was unable to breathe or move. The pain was incapacitating and threatened to make it impossible for me to undergo the diagnostic mammogram scheduled for Friday May 20. We went to a walk-in clinic and I was tested for heart function and then prescribed narcotic pain medication. As it turns out, I do not do well on pain medication. But it was clear to all that it would be necessary in order to get me through the diagnostic mammogram on Friday.
I did teach my classes on Tuesday. Every student there still remembers how awful I looked. I also planned to teach my normal complement of classes scheduled for the next day at another location. I thought I would feel better in the morning. Even though the doctor at the walk-in clinic had told me that this condition can take months to heal, and that if it is not rested it can be chronic and severe. Nonetheless, I truly thought that it would be better and I would soon feel fine. “Healed” is different from functional.
I can see now that the concern by my students was not only for my health, it was for my very sanity. It wasn’t until Tuesday night that I gave in and did the unthinkable. I emailed the school where I had worked faithfully for 13 years of Wednesdays, and told them that I would not be able to teach my classes there the next day. I still feel the pain of that last-minute fail. But of course, as everyone else knew, I was not better in the morning, nor the next or the next. The next Tuesday I was forced to cancel those classes, and Wednesday as well. I was never able to resume my Wednesday classes again. If I had known that at the time it would have broken my heart. Now I understand.
On May 20 the mammogram was suspicious enough to warrant a follow-up ultrasound. Been there, done that. The ultrasound showed highly suspicious areas both in the breast and in the lymph nodes, and the doctor recommended further testing. That was different. I learned that biopsy is the next step. I was surprised, because that same area of the same breast had been pronounced benign less than two years before, at the same hospital. How could a problem area have become so large in such a short time?
A New PCP
The order for biopsy prompted a fire drill of changing my Primary Care Physician (PCP) to a local doctor affiliated with local hospitals. My doctor for years previously had been in the northern part of the state, but I had just moved to the southern part of the state. Karen and I met with my new PCP on June 3. She sent me immediately for a chest Xray to rule out the possibility that my debilitating chest pain could be caused by an injury from the physical exertion on May 16. My new doctor called me with results that same evening. The Xray was clear. I felt I was in good hands and well prepared for the new territory to come.
This PCP is very important to my American team now. She is the anchor. Through my patient portal with her office, I send her copies of my correspondence to my oncologist, so that the information is collected in one place. Before leaving for Germany I was concerned about the upcoming meeting to inform my oncologist of my decision. So I asked my PCP to send her appointment notes to him, thereby informing him of my meeting with her and passing on to him the information about my decision. She sent a copy to me as well. The report of my appointment with her served as a correct and concise synopsis of my decision along with the assurance that I have made my choice and am committed to it. By the time I met next with the oncologist he was already informed. My PCP is not in support of my decision! But she is still qualified and objective enough to lead my medical team in the U.S. I believe this road would be much more difficult to travel if I did not have one central doctor at home who can be the center of the record of my treatment. When I return home I will make another appointment with her to update her and let her see me for herself. I intend to keep this doctor, she is everything I could want in a personal physician.
On June 9, I underwent the biopsies. Two tiny tumor markers were put in place during the procedure, and then another mammogram was performed to provide an xray of them.
The biopsies proved that both my multifocal breast tumor and my lymph nodes contained cancerous cells. But again, I had had a mammogram and diagnostic ultrasound of the same area just two years before at the same hospital. The area was studied and pronounced benign with no further action necessary, nor was there any instruction to watch it. The tumor they were finding now was large and multifocal, so it was many years in the making according to all scientific accounts. Where was it two years ago? Why was the tumor not seen or even suspected? This is such a big miss that somehow “more mammograms” is not the logical answer. There has to be a better test. I would later meet thermography, elastography, and liquid biopsy through apheresis.
I was immediately scheduled for an MRI one week later, which would be my first. In addition to dealing with the diagnosis I now had to face something that I had always imagined to be unbearable. I’m claustrophobic. By this time I was at one hospital or another nearly every day for tests. Karen would drive me and I would hold a pillow to my chest to absorb the pain of costochondritis over the roads. I got permission to visit the MRI machine when I came for another CT scan. The technicians were welcoming and reassuring. But as a claustrophobic I was terrified. However, I am also a competitor, so I planned how to complete a successful MRI. Naturally, I felt I had to practice. This is the set-up I devised at home to help me acclimate to close confinement for nearly an hour. I devised a training program, because that’s what I do. I practiced faithfully, beginning with under one minute and working up to a nap with the cat on my chest in there.
I had my MRI on June 16. Of course I nailed it! I posted these pictures to facebook. I had not told anyone outside the family about the extent of my diagnosis, but the writing was on the wall that I was going to have to make it known. Although I avoided direct questions on this post, it helped me get ready to tell my students.
Certainly the rumors in my sport, which is also my profession, were already flying. I had some information, including a report of clear chest and sternum from the CT scan before the MRI. I had originally thought I would share when I got the final word about staging, but I realized that this was going to take longer than I had thought.
Telling My Students
So, on June 17, I wrote a letter to my in-person students and the owners of the in-person school and the online school where I teach. I invited the in-person school to print and share my letter. In the letter I told them what I knew, that I had breast cancer which had spread to the lymph nodes. I also told them that my sternum and internal organs had been pronounced clear via CT scans. “It could always be worse,” I said in the letter. Little did I know!
I had not been teaching much in person since early May, but I did continue to teach online where my condition was not widely known. I was able to work my online class around my appointments and my wellness from day to day. My in-person students were being very patient with well-qualified substitute instructors, but they all knew as time went on that something was very wrong. I think they were relieved to get the letter and know what was up with me. It’s a big crowd, and I didn’t have everyone’s email, but I trusted that the in-person school would share and that the letter would get around, as such things do. My students turned out to be a fine group of advocates. They were pressed from all sides to talk about my condition, and they did so with grace and while maintaining respect for my privacy. These people saw me at my worst. I looked awful, and frankly I felt awful. There is no paid vacation or sick time when you are a small business. I wanted to work and I did work, but it was a struggle and it showed.
It could have been a slippery slope into abject sickness with all the tests and bad result after bad result. It is simply debilitating to feel unwell and look unwell, and especially to be told daily by experts that you are unwell.
I did find one powerful tool which has turned out to be the biggest difference of my life. I had begun improving my diet in May. This was empowering, a strong and positive tool which I alone could control. I was not dramatic with the changes at first, as I have been a sugar addict my entire life. But as time went on I became more and more convinced that this was a critical part of my treatment.
You will read much more about my diet as time goes on. Over the course of my staging process it was diet alone which improved my strength and wellness. I refused the shipment of chemotherapy drugs and never took them. By the time two months had gone by since my diagnosis, with diet as my own medicine, I was feeling great, and I was back to teaching and training full-time. My chest was not healed, but it was manageable. I felt that my cancer could also be managed. I read a positive article about cancer as a chronic illness. It was based on chemotherapy, but why couldn’t I take the same approach with my diet as the medicine. Every meal became my medicine.
Diet gave me a new zeal for healthy choices and a new outlook on my disease. And the more healthy choices I made the better I felt. Contrary to all the negativity going on around my staging process, and knowing that I was more sick than I ever could have imagined, I felt better and stronger every single day because of my new healthy relationship with food. This was the medicine I chose. Once I began to feel it working there was no stopping me. To this day I take it very seriously and every day I benefit from healthy food choices.
Turning Bad News Into Good With Karen
Karen and Heather came with me to my doctor’s appointments. Karen also drove me to every test, no matter where or when. Heather’s schedule took her away regularly and she does not normally live with me. She came often and helped immensely around the house as I tried to get all of my affairs in order in the new home. Karen’s home is about 20 miles from mine, and she was driving every day. In early June Karen received notice that she would be losing her rented space where she had a thriving business in athletic rehab and strength training. Poor timing for such a blow.
We decided to combine forces and move her in with me. We worked to get my extra building, an oversized garage, into shape as her new professional space for human fitness training. We worked diligently throughout the month of June, coordinating work we could do ourselves (I was very limited!), and work that I needed to hire out. Karen bought top-notch equipment. She opened her doors on July 1. We are both just like that. We see a need and we get things done. We make good decisions and we solve problems well, and we usually see eye to eye. When we don’t, we have honest and respectful discussions until we agree or compromise. We don’t waste time stressing the small stuff and we treat each other well even if we are angry. Our country could learn from us! My illness has strengthened our friendship even further.
Meanwhile my tests and diagnosis were still ongoing. I now had a surgeon on the team, and we three met with her and liked her. She had said even before the biopsy results that she felt the tumor mass should be removed even if it is not malignant. I don’t remember at that point whether she felt that the entire breast should be removed in that case. But at any rate, even before I knew the biopsy results I knew from that first meeting that I would be preparing for breast surgery.
After more tests and the positive biopsy results, we had another meeting with the surgeon. That meeting was much more targeted to what we now knew and the treatment plan she would recommend. She said that I would need to have a round of chemotherapy before surgery, in hopes of shrinking the multifocal tumor mass. Then I would undergo a full mastectomy and sentinel lymph node removal. The condition of those lymph nodes would determine whether all of the remaining lymph nodes under that arm would be removed as well. After healing from the surgery I would undergo a round of radiation treatments, and possibly then more chemotherapy. Then hormone suppressants for 5 years.
At that second meeting my surgeon took a great deal of time to explain my tentative staging (IIB at that time), and to explain about hormone blocking, the surgery, and my type of cancer, which is estrogen receptor positive and progesterone receptor positive and HER2negative (ER+ PR+ HER2-). We all liked this surgeon. She was conversational, descriptive, she used words and diagrams and personal notes written on my pages of the hospital’s preprinted breast cancer information charts. And she was very patient with me.
Karen and Heather felt I was less than cooperative. I liked the surgeon too, but I did have some strong questions, especially about why it was necessary to damage my immune system by removing so many lymph nodes. I already knew from my research and my second opinion doctor that it’s possible in otherwise healthy people that lymph nodes which are malignant upon biopsy can later go back to normal. I also made it clear that I would not be able to tolerate hormone blockers for 5 years. Other than that, I remember myself as a willing patient, on board with the necessity of a full mastectomy. But my family said I should be less argumentative in the future. As Karen said to the surgeon: “Are you trying to tell her that you are trying to save her life?” The Patient is a new role for me. Of course I did have to learn to stop interrogating the doctors. I began to realize that the doctors were trying to give me information. They were not trying to have a conversation with me to decide best treatment. They deal in standard of care. Their plans are in place before I get there, whether they have read my individual chart or not.
I was given the hospital’s official booklets in a large binder and met with a hospital teacher who offered guidance regarding the various areas of concern. She was there to answer questions. I do not remember one thing that the well-meaning woman said to me. My head was spinning at that point. I did look up some of the guidelines, standards, and definitions as the next weeks went on. I still have that huge binder with my cancer things.
My surgeon also recommended an oncologist for me, and she made it very clear that I should have a first meeting with an open mind as to whether this person would be a good fit. He will be the one overseeing the chemotherapy end of the treatment. She also recommended second opinions. I have heard of doctors being threatened by second opinions, but this surgeon was quite the opposite and seemed very secure in herself. After that second meeting with her my next step was an appointment with the oncologist.
The Tumor Board’s Decision
In cases like mine it is common for the surgeon involved to bring the case before a mixed group of experts who comprise a Tumor Board. It is a good way of getting multiple inputs. In the meantime I also contacted another surgeon from a different hospital as another means of getting a second opinion. My surgeon did meet with the Tumor Board about my case. There was mixed opinion from the Board as to whether further tests of the chest should be obtained because of the costochondritis. Some of the doctors also recommended a full bone scan. That was the decision. The surgeon kept in touch with me as tests were ordered. The hospital called to give me an appointment, which was for a couple weeks later. I was scheduled for another CT scan, and a full bone scan. Ultimately I was able to change the CT scan date and combine the two tests on the same day.
Meeting My Oncologist
The initial meeting with the oncologist happened on July 1. I liked him immediately. We talked about possibilities. He wrote notes for me regarding drug names and standard of care chemo practices. He freely talked with us, complimented me on my overall vitality. He carefully measured my tumor mass. My bone scan was scheduled for the next week, and he did say that if that scan were positive then that would change the treatment plan, and I would also not be eligible for the clinical trial which we had discussed. He gave me a lot of information to look up online, including clinical trial findings and ongoing research. I was very satisfied with the prospect of working with him. He asked me to call his office the day after the bone scan and he would probably have the results that soon, before they appeared on my online chart.
If I had that part to do over again, I would NOT meet with an oncologist until after my staging was complete. There were too many “if this, then that” parameters on the table at that first meeting. Thank goodness I had Karen and Heather with me to help ask questions and sort it all out after the fact. It would have been simpler, it would have saved me many hours of research, and it would have been less traumatic, if I had not been holding the prospect of his clinical trial close to my heart only to have him necessarily take it away when my staging was complete.
The Full-Body Bone Scan
On the day of the bone scan, Wednesday July 6, I also underwent another CT scan, this time looking at internal organs in the abdomen and pelvic regions. On Thursday I called the office as directed but could not reach the doctor. A nurse took the message that I had been directed to call for bone scan results. I went about my evening plans to drive north for agility practice with my students. While I was there I got the call from the oncologist, and we spoke as I walked around outdoors on a beautiful evening. The scan had “lit up” in several places, including the sternum, the clavicle, the sacrum, and several places in the spine. He said that he would be speaking to colleagues about it, and that he would call me the next day to confirm whether a bone biopsy would be needed. He said that the best news was that the head was clean. See? It could always be worse.
The next day he called to let me know that I would be scheduled for a biopsy of the sternum. He said the finding in the sternum could be a lesion caused by the costochondritis. But they did need to know. That biopsy, with my chest still sore and not nearly recovered, was not going to be fun. By this time I was of a mindset to just put my head down and go forward. Just another nasty test. It is what it is, and we do what needs to be done. I will never submit to another biopsy knowing what I know now, but at that time I was simply on the wheel and going around.
Biopsy of the Sternum
The biopsy of the sternum is CT scan aided. I was not prepared that I would have to spend half an hour inside a tube before the actual procedure. And when the bed was slid out and I could feel the light on my closed eyes, I made the mistake of opening them thinking that I was in the open. I was not. That was difficult, because I was told not to move. Breathe, says the claustrophobe. Breathe.
Later the bed was brought out further for the procedure itself. That procedure is exact, the bone has to be taken from exactly where the bone scan lit up, there was a drawing on my chest from the template, and I must not move. The bone is deeper than you think. Of course a local anesthetic was used, so it was not painful through the skin or tissue. The sensation was more like pounding and pressure, torque, and pure bone pain, which is hard to describe except that I had been feeling it for two months.
I had refused pain meds because they make me feel sick. If I had known what a long and involved procedure this would be then I would have taken the pain meds. It was painful, but more than that it was long! The biopsy procedure was repeated in two different places. The surgeon told me when he was nearly finished with the second biopsy. As he finished he promised that he got two good pieces of bone, so the procedure was a success and would not have to be repeated. That experience was difficult in every way including that my nurses were uncommunicative. I cannot say enough good about the surgeon, but I will try never to go into a procedure so ill-prepared again. I am describing it here in hopes that someone else can benefit from this as a heads up. This one’s a bitch! Take the pain meds!
As with all biopsies, you have to wait some time for results.
It was Tuesday, July 26, when a nurse called to schedule an appointment with the oncologist for that Friday, July 29. Of course I said yes and put it on the calendar. My entire summer had been built around the medical visits here and there. Other plans had been routinely pushed aside.
I thought about the three days to wait before the meeting, and I found that unacceptable. I called the oncologist’s office back and I asked them this: “Please tell the doctor that I do not wish to wait until Friday to learn my diagnosis. Tell him that I will be much better prepared to decide our treatment plan if I have time to process the findings. Please ask the doctor to call me with the diagnosis and not make me wait until our meeting on Friday.” The doctor called back within the hour. There is cancer in the sternum. I am officially Stage IV. OK, thank you. I will be prepared on Friday. I hit the internet with renewed passion.
My daughter and a friend dropped in to visit that afternoon, and we had tea and good conversation. When the friend left, Heather and I were talking and something made her ask if I knew results. I told her. That was difficult. I don’t know why I didn’t cry then, in that safe and private space with my daughter who loves me so much and was suffering so much. All along the strange and awful path I never cried about my illness. It probably would have been easier on my daughter if I had cried. I think she did the crying for me in private, and with Karen. They both did a great job for me in person, but I now know that they suffered out loud when I wasn’t around.
I was taken by surprise to hear that cancer had spread to my bones. Only a month before, my sternum had been pronounced clear by CT scan. I had already told my world that my cancer had not metastasized beyond the lymph nodes. I was planning for a mastectomy in the months to come. I had had my hair cut and was mentally prepared to lose it to chemotherapy. Stage IV means all of that is no longer in play. My cancer is officially incurable according to standard of care. A different chemotherapy drug was prescribed which was expected to give me more time until it stopped working, at which time hopefully another chemotherapy drug would pick up the job of keeping my cancer at bay some years longer. In other words, chemotherapy for the rest of my life is the standard of care for my cancer.
Learning About Other Options
Ever the planner, I had also been pouring over clinical trials and treatment options online. And, most important, I had studied the entire documentary series called The Truth About Cancer, which I highly recommend. This series was presented as a free online seminar. It was 9 episodes spaced out over 9 days, including 18 hours of information from around the world. I watched many of the episodes at least twice, taking notes and learning more than I could have dreamed about alternative cancer therapies and healing practices. This material supported everything that my own mind and heart were finding. Why does “immunotherapy” in the United States continue to refer to pharmaceutical drugs designed to alter and force the immune system to do this or that, and continue to carry dangerous side effects? There are alternative treatments for cancer that support and strengthen the immune system rather than damage it.
I already knew of Karen’s client who had offered to talk with me about her alternative treatment which had saved her life years ago and continues to keep her well. You will get to meet Marilyn, my mentor, in Part 2 of this post. We all need angels at one time or another, and with this illness I have met quite a few of them.
After the second meeting with my oncologist and being told that my cancer was incurable and sad, I contacted Marilyn and asked if I might call her. We have been corresponding ever since. She is my mentor in this kind of journey, and she was the sponsor who introduced me via email to Dr. Kuebler at Labor-Praxisklinik in Munich.
As my journey goes forward I will share all I can in order to be a voice for others who might want to do as I did. Not that other people would end up choosing what I chose, that is not what I mean at all. I am not an expert, and many many possibilities exist in the big world of cancer treatment. I only hope I can inspire others to use their critical thinking skills, to examine their options and get to know what they really believe they should do for themselves.
END OF PART 1