August has been quite a month.
Almost three weeks ago I had an appointment at Duke with my new oncologist, Dr. Peppercorn. He is the replacement I have been assigned to because Heather left the oncology department at Duke. That whole process has been very painful for me. I ADORED Heather with a high school crush zeal. When I opted against surgery and radiation in January she was against it, but supportive. She assured me that she would be my doctor no matter what, and she was actively listening and participating in my alternative choices. Then with out warning Heather suddenly stopped communicating with me. Emails were not being answered, or were routed to her nurse practitioner who was being very minimal and cold at best with me. At worst the NP's emails had what felt to me like a hostile and dismissive energy. I felt very unmoored and anxious because having a Duke oncologist on my team felt absolutely right, good and important. Suddenly I felt like I was left to float.
This went on for several weeks, and then I was told that Heather was on a leave of absence. I waited for about another month, and then tried to contact her again. This time I was told that she had left Duke. I asked if there was a way to contact her and say goodbye.
Eventually I pinned down an answer on Heather's whereabouts and she did answer a very personal email wherein I expressed how deeply sad I was to be losing her as my doctor. She replied and told me that she was only leaving oncology, but would still be at Duke. She stated that "I need a break from Oncology for a while. It was getting too hard to lose people I had known for so many years." When I wrote her back and asked her if I could still go to her for advice, she did not answer and I have heard nothing since. I can't help but feel like she has been stifled somehow. That because I have left the box I am now seen as a liability instead of what I am: a patient who is making my own choices, and who wants advice and perspective even if I choose not to follow it to the letter.
So, I had an appointment with Dr. Peppercorn. For me it was a check in. I wanted to know what he advised I do, even though I felt pretty sure I already knew the answer to that question. I also wanted to get a pulse on whether or not he would support me and work with me and the other members of my healing team. My meeting with him went well, I think. He did indeed spend 90% of the time we had using every tactic at his disposal to talk me into surgery. He was totally balls out on that too. He was unabashed about wanting me to be scared. His perspective is that I am in imminent danger if I don't do it. In his words he 'hopes I am still curable'. He asked me to think it over, and make a decision quickly. He said he felt like this was the missing piece, and if I did this I could then move on with my life and feel really good about the future. He left it on a confident note...a sort of 'I know once you really think about what I have said you will know in your heart this is the right choice for you.'
More importantly to me, he also expressed a willingness to work with my other folks. He was willing to share his notes, and he told me he would communicate with Jason at Natura and listen to his reasons for wanting to run certain labs and tests. He also ordered two labs to be done on the tumor samples that give information about how aggressive and proliferative the cancer I had was. He essentially told me that if he was given compelling scientific reasons for doing any tests or labs he would be willing to listen and work with the Natura folks. On that note he refused to run some labs that Jason had asked I have redone because they were totally normal the first time. He felt it was not necessary to re-run any labs that were in normal ranges to begin with. When I asked if he would hear why Jason wanted them re-run he said he would. I felt very good about all of that. He seemed to me to be very 'no nonsense' but also open minded and willing to listen.
I left the appointment however feeling very very heavy hearted. I was once again facing this huge decision, one that I had already made. It felt a little bit like going backwards.
Then, I treated it like I have treated every other big decision. I went to work.
First, I emailed two women whose blogs I read faithfully. Both of them had breast cancer and both of them are currently cancer free with out the use of ANY traditional treatment at all. I told them both how alone I feel, and how terrifying all of this is for me because I often feel like I am being some how subversive. It's insane to me to feel that way about not wanting to cut my breast off. Nonetheless, I feel this crushing loneliness here because there are no websites dedicated to 'Young Survivors Who Don't Listen to their Doctors." Much as I enjoy these two blogs, I also admitted to them both that it's still hard for me b/c they are both not in my demographic. Both of them are older, and at least one of them had an estrogen fed cancer. (I'm not sure about the other one). My cancer was 'triple negative' which is in a class of it's own in a lot of ways from what I understand. I can't help but wonder...does that make a difference? Am I in even more peril because of it? Many women I found that had estrogen positive cancer were glad because there are a lot of long term drugs given to them to suppress the production of estrogen in their body. It is a feeling of extra insurance to them. I was actually delighted when I found out mine was not estrogen fed. To me the idea that my body was creating this problem because of something that occurs naturally was really terrifying. Also, it was deeply saddening to me to think of being medically forced into premature menopause as a way of keeping me healthy. That too seems very backwards to me. Very out of sync with nature and trusting our bodies to be able to heal.
Both women wrote me back and were wonderful, supportive, and empathetic. They both encouraged me in their own ways to listen to my own truth and to trust myself.
The next week I scheduled an appointment for a thermascan. I had been thinking of doing this since talking to a surgeon in April who urged me to have one done and consider removing the tumor bed if it came up 'hot' on the scan. I wanted that further piece of information.
I also had an appointment with a therapist I have recently started seeing. She is a Kundalini Yoga teacher, as well as a certified therapist and I found out on our first meeting that she has counciled cancer patients for umpteen years! I did not even know that about her going in. I just knew that she was a therapist and that I would be able to resonate with her spiritually. My appointment with her was VERY powerful. She listened to me recount the past week, the appointment, the emails with the other women, and my endless list of self doubts, worries, weighings of pro's and con's etc etc and she said "I hear you keep saying that this doctor is 'trying to make you feel' this way or that." She also noted that giving up on the way I am doing things now is like giving up hope on my body...that this body I have right now is capable of being a whole and healed body as is. She said that this kind of hope and the joy I have had because of it is immensely powerful to the immune system and that I should not overlook that. Then she said "It's like this doctor shot an arrow of fear into your heart center." When she landed on that metaphor it all came pouring out for me. Yes..I am afraid. I am so afraid that I am just a naive little nothing who can't possibly know enough to be making these kinds of choices...who am I to think I can do this my way? I told her that I can't help but go to those dark places where I see my loved ones gathered around my hospice bed and I have let them down and it was all my fault because I was so stupid to think I knew what was best and I was now railing against the sky WHY WHY OH WHY did I just not do what I was told?? She asked me to use a Kundalini technique we employ in class to 'tune in' to our greater creative consciousness so I did. I called on my infinite creative higher self and I went into a really deep meditative state...and when I was there I was calm and I could hear my own voice with out the overwhelming babble of fearful voices. When I was there I heard what I needed to hear. Yes, I would consider having surgery IF there was cancer in my body again. Nothing else would be compelling enough for me. Even though I know that this is the most extreme circumstance and if it were to happen it would mean my health was in very serious jeopardy, that and that alone would be my sign that I had been making wrong choices. That was a powerful and simple truth that I knew all along, but felt too afraid to really land on and express.
That same week I also had an acupuncture appointment with Barbara. I told her that I had this nagging little spot on my back that has been bothering me on and off for months. What I did not say was it was accompanied by a little voice of fear in my head that kept whispering to me that it was bone cancer...doom. Barbara worked on my back and the nagging spot went away.
Let's not forget also that the same week I had this terrifying appointment with Dr. Peppercorn was the same week I got my period back!
THEN...last week Barbara contacted me to tell me that she had emailed Donald Yance directly with some questions I had felt I was not getting satisfactory answers from with Jason. Namely, I have asked Jason 3 times now to please put me in touch with other patients on the protocol I am doing. I especially wanted to be connected to any other triple negative breast cancer patients they might have. He never gave me a very straight answer on the matter, which had me feeling like "Okay, why don't these people want their patients to talk to each other?" The end result of this was that Yance has decided to take me on as his patient personally...which is a HUGE BIG DEAL because he is in such high demand that he does not take on new patients. I am totally floored. In an email he wrote back to Barbara he indicated that if I am his patient he can put me in touch with his other patients. (Jason was trained by him, but they have different practices).
THEN, I heard back from Dr. Stocks and he told me that my thermascan was completely clear. There were no signs of any vascular hot spots at all.
So...let me count it up.
My period came back + encouraging emails from women who are doing it naturally + powerful therapeutic session wherein I was reminded that I do know the answers to my difficult questions despite my fears + amazing acupuncture session with Barbara + thermascan results entirely clear + Dr. Narula gave me a years supply of evoidiamine + unexpectedly Donald Yance has offered to take me on as his patient = Dr. Peppercorn is probably not going to like my answer.
It's just this...in the past few weeks all I have gotten over and over again are affirmations that I am making the best possible choices for myself. I am not going about this naively. I am not waving my magic new age incense wand and hoping I'll just be okay (which is how I think a lot of people must look at me) I am constantly gathering these amazing and brilliant teachers and healers around me and what I have is a network of experts who offer advice and encouragement. I am vigilantly having my health monitored and looking for any sign that the protocol I am doing is not effective. IF it ever proved itself to be ineffective I am ready to face the music and admit that it is time for radical but hopefully life saving procedures.
Not that I tend to dwell in 'oh what if' land too too often, but I must admit that when this all began I lamented to myself that I wished I was brave enough to forgo chemo. I wished I was brave enough to just do it all naturally and trusted myself enough to know my limits. I was scared. I was 30 years old, and I was told I had a huge aggressive tumor that was swiftly making a b-line to metastasis. I was told that if it did that I was doomed. I was told that I basically narrowly escaped a death sentence and really noone could promise me that I was going to be cured at the end of this ordeal.
My perspective is very different now. I look at the world we live in as a diseased place where it is extraordinarily difficult to be a healthy person. You can 'do everything right' and still get cancer. The world is sick; it takes an iron will to be healthy.
I will be meeting with Dr. Peppercorn in a week and I will tell him that surgery is still not the right choice for me right now. I will tell him that I want him to be on my team...not on some kind of opposing team. My health is everyone's goal, I know that. Sadly I feel like I am trying to be some kind of emissary between East and West but it's like asking Suni's and Shiites to learn to respect each other. I feel that my relationship with Duke may very well draw to a close. This appointment will make or break that. If I get the sense that his attitude is 'my way or the highway' I will be putting my thumb out and on the yellow brick road again, looking for an oncologist who wants to dialog about healing.
Putting in your two cents
1 year ago