I am “unique”

Today is five weeks since my surgery. Much has happened in that five weeks and honestly I have been trying to take it all in. I have wanted to write but not knowing where to start. We are still in the information collecting stage of our journey and do not have a absolutely clear path ahead yet. 

It turns out I am “unique”.  Honestly, I have known that my whole life but when that is a word used by my oncologist it holds a different space in my heart. There is not much literature or research out there about what my body did. That being said the path ahead has been unclear. Bright side – the mass in my pelvis very thankfully was not ovarian cancer. Only recently have I mentally let in the seriousness of that possibility when we were going into this surgery that it could have been ovarian cancer which is much more fatal than colon cancer. What my body did was this – a rogue cell of colon cancer attached to my ovary and made it grow at a very fast rate. At surgery my tumor, Cameron, was 10 by 6.5 inches and two pounds. Apparently most bodies don’t do this cancer hopping thing. What can I say I like to do things a little different. With this information my oncologist is not able to give me solid examples, statistics, paths, etc. She does try to give me statistics but I am not quite sure what they are based in if she is also telling me that there are not many examples anywhere of what my body did. They are based on cancer treatment in general I guess but that doesn’t seem pertinent to my particular case. It was clear she is out of her comfort zone. Her recommendation was “If you were my sister I would suggest you do the chemo.” It feels like the protocol is – when in doubt, drop a bomb. 

At this point in my follow up meeting Jenn asked, once again, for me to get a PET scan. We have been asking for a PET scan since my diagnosis and they have always declined saying – “That’s not how it works”. We were never quite clear why we were always declined a PET scan. Lucky for me I am now a unicorn and a curiosity. And if I am to be real – a potential case study in the medical world and she enthusiastically agreed to order me a PET Scan. A PET scan is where they inject you with a radioactive agent that lights up cancer cells with the scan. I had previously only had CT scans that show shadows of masses and lesions and if something showed up they were not sure what it may be if anything at all. 

I am not going to lie. I was terrified of the PET scan but knew it was information we needed to make decisions moving forward. I cannot help but feel every twitch and ache in my body and have a thought “is the cancer back?! in my bones? in my liver?…”. With a PET scan I would know if there was cancer still visible in my body through radiation and a very large machine, not just the eyes and opinion of a surgeon. I did not want to light up like a christmas tree. I had thoughts of trying to get out of it just because at the moment I was afraid to know. 

When the day of the PET scan came I was very quiet. I knew this was the day that could change a lot of things. At the hospital when I was first taken back for the injection, the tech was a very sweet young woman. I could tell she loved science and her job. As we were walking from the imaging waiting room to this trailer attached to the hospital at the end of this short hall that held the radioactive canisters and the imaging machine, I could not help but start to cry. I apologised for crying and she handled me so graciously getting me a tissue and a warm blanket. After being injected with the radioactive solution and drinking my two styrofoam cups of special punch flavored drink needed for the scan, I waited by byself for two hours in a little room. The woman said the radioactive agent likes to go to where there is activity so if I read it would also go to my eyes and so forth throughout my body. My 44 year old self tucked my legs up into a ball on the hospital recliner chair covered by the once warm blanket she gave me. I felt like my inner child was coming out in full form and I didn’t care who saw me like that. I mostly laid still trying to quiet my mind and rest. A mantra I repeated in my mind that I had helped me since my surgery was:

Let go

Just be

I am enough

I love my body

I am going to live

I sat in that chair and repeated that until my mind drifted to a resting state. 

A man came to get me for the scan. He was also very kind. The scan was easy. It only took twenty minutes in the scan tube and then I was done. We didn’t know when we were going to get my results but it was done. 

Jenn and I went to Pho House for a big bowl of broth and veggies after. I had not eaten yet that day so a big bowl of pho sounded amazing. While there, I noticed I missed a call from the nurse at my oncologists office. Jenn saw on my face how scared I was to return that call. As I held the phone to my head in the middle of the restaurant, right after they had delivered our food, Jenn said to me “I see you.” This is something we say to each other when we see the emotion that may not be able to be verbally expressed. Laura, the oncology nurse, got on the phone and said “Your scan is totally clear.” At that moment I started to shake and sob uncontrollably. Laura was wonderful and said if ever she is calling it is usually good news and she was sorry I was going through this again. She also checked in to see if they were tears of relief. I replied a blubbering “yes.” I sat and cried for about ten minutes in the middle of a mostly empty Pho House with Jenn by my side just holding me. 

At that moment I realised this was the first time since this whole journey started in July of 2018 that I felt we really knew that cancer was not in my body. Before the oncologists said it but we didn’t totally believe it. It was even harder to believe after the second incident. I feel like I could take a true deep breath for the first time in 18 months. 

One thing that we planned for, even before the surgery, was to look at all options of health care. The first time I was diagnosed with cancer we were recommended to go see this eastern medicine doctor – Dr. Lu at Nourishing Life in Ann Arbor. We made an appointment with him to check it out and then realized how expensive it would be and chose to work with neuropathic and acupuncturists friends who had offered their services to me. They were so amazing and key to my treatment the first time. 

This second time around, especially considering my “unique” status we chose to really check him out. Before my surgery on January 10th we made an appointment with him for January 27th. We were open to all avenues at this point. I am so thankful we were open to this path and were proactive even though we didn’t know what we were dealing with yet. 

I had heard Dr. Lu speak in April 2018 at the Zen Buddhist Temple that Jenn and I are members. He is a straight shooting knowledgeable man that was taken in by monks at the age of 3 to train in eastern medicine. He also is a M.D. trained in China. He works with doctors at both the University of Michigan and St. Joseph hospitals. On my first visit he was fast talking and to the point. He looked at my tongue, took my pulses, stuck me with acupuncture needles and talked about what he was doing all along. He said my liver is stagnant like a pond with no pump with scum and mosquitos. My t-cells were not well and neither was my blood. It was not good. Jenn and I were a bit like deer in headlights at this time trying to take it all in. He said for now we just need to focus on getting my liver in a better state especially if I am thinking about doing chemo. He informed us that if I did chemo they could treat me with cupping, acupuncture and massage but not herbs. He has agreements with the hospital that if a client is doing chemo, eastern medicine plays a support role for side effects and getting through. Only after the chemo could he use herbs and play more of an active part in healing. If I chose not to do chemo, for my case, it would be a five year relationship with him with an intense first year and it would be very expensive. I could also choose to do both – chemo for six months then eastern for five years as he first explained. Doing chemo only and not eastern medicine is not even an option in my mind. 

To get my liver moving he gave me a bag of tea that was $140 and yielded 6 cups. Two cups to be drunk each day at 10am and 4pm, give or take 15 minutes. It was to be brewed in a special pot that we purchased from them. It was to be brewed exactly by the instructions and it took 2 hours to prepare. The leftover herbs were to be used as nightly foot soaks for at least 20 minutes. If you know how I cook, following instructions to a `T” is not my thing. When I made this tea I set many timers and pulled up a chair right in front of the stove so I could keep my focus on it and not mess it up. I was religious about taking it. It tasted like bitter dirt water. Definitely needed a chaser of water. 

There was one day when I prepped my tea and put it in a closed travel container because I was going to my office hours at the prison. I planned to leave prison a little early to make my 10am drinking. On the way to the prison I started to smell the tea in the car. I wondered “why am I smelling the tea?” Once I parked my car and went to get my stuff out of my bag I noticed that my travel cup was not locked. The lid popped open and tea was all over my bag. That was devastating. Not only was it tea for my health, it was a $24 cup of tea all over the front seat of my car. I shortened my office hours even more and rushed home to take my 10am tea. I was now one short of my regimine. Even the best intentions don’t always work out.

Dr. Lu also recommended a new diet for me. It was not far off from the direction I have been headed but it did put boundaries on my consumption which I have actually appreciated. Instead of wondering how to eat he was just telling me. I am on a no dairy, no gluten, no sugar, limited fruit (avoiding high fructose fruit), organic, mostly vegetables and grains, limited oils, some animal protein (fish and fowl), and drink only green tea and ginger tea. Yes, no coffee for me. I have actually been enjoying eating like this. Jenn and I are going to hopefully try some new recipes this weekend. All this being said I do not eat out in restaurants much now. (But I do not mind being the person drinking hot tea out at a meal to hang out with friends and be social so please still ask us to hang out!) I have unintentionally lost 25 pounds from changing the way I eat. So if you see me around town, I am not wasting away from cancer I am slimming down because I am eating for my life and the long life it will be. 

I did respond well to the dirt water tea and new diet. Dr. Lu was able to give me one more bag of tea. He did say ideally he wanted me to have three bags of tea but it just was not possible at this time. These bags of tea are very rare and there is a waiting list. Dr. Lu shared with us that one of the ingredients in the tea is from the bark of a tree in china. There is only so much they can harvest at a time. He is not willing to sacrifice the tree in harvesting to meet the demand for human life. I really respect that philosophy even though I am one of those humans that could benefit. 

At this second visit Jenn and I were acclimated a bit more to this environment and we asked lots of questions, which Dr. Lu loved. He really likes to teach and inform his clients about what’s going on. Going to his office is always positive, empowering and educational. Even when he told me my liver is a stagnant pond, I felt like he had a path to work with that if my body responded to it. 

Dr. Lu has been out of two for two weeks but I have been going for treatment three times a week with his associates. This has included guasha, which is an intense massage with a hard tool, acupuncture and cupping. I have seen Jesse and Kelley who are both great practitioners. I have really enjoyed their energy. I can tell you that I have a very high pain tolerance but having cupping done on your shins was really painful for me. I am so happy I have taught coping techniques for pain for the past 20 years because I employed them hard that day. No joke. That was crazy intense. I dropped a few “M*%$#@ F@#*ers ” in that office when Kelley put the cups on my lower legs. She said if I needed her to remove them she could but I plowed through breathing and scanning my body for tension and releasing it for the entire twenty minute session. 

Post the PET scan and working with Dr. Lu I was feeling very positive and energized that I can work with what has come our way. Then I had my second follow up with my oncologist at the hospital. In that meeting she reiterated my uniqueness and informed us that if I did chemo they would use a different set of drugs. She shared the pros and cons. She shared statistics and timelines. To be honest my anxiety started to rev up about half way through the visit and I started to disassociate from the room. Jenn and the doctor were conversing but I mentally checked out. I remember telling myself to look at her hairline so I at least looked like I was able to listen and take in what she was saying. Luckily for me Jenn was asking all the questions and listening because I could not. That visit filled me back up with fear. We have left it that we are still information collecting and we will get back to her on what path we chose to take. The doctor wrote down very clear notes on what her recommendations are so we could share with Dr. Lu. He already has access to my files at St. Joes and I sent his office her recommendations, so when he returns we can hear what his thoughts are on it all. At which time we can decide what path we are taking. 

I really have taken a lot of time to reflect on how I feel at Dr. Lu’s office and how I felt at the oncologist. I do strongly believe that cancer is not just about my body. It is also about my mind and spirit. Dr. Lu said this to me on my first visit. It is not just the body but also the mind and the spirit that need to be healed “You need to decide you want to live.” Those words hit me like a ton of bricks. I am still processing them, and he is absolutely right. 

On this journey I have also sought out friends who do body work, meditated, found a great new therapist, I am listening to The Power of NOW by Ekhart Tolle and I have even spoken with a channel. Dee Wallace actually. Yes, the Dee Wallace that was the actress that played the mom in the movie E.T. My half hour session with her was amazing and brough my butt to the table. One thing she said was that I have created things to struggle with in my life to prove I am worthy and strong. It is time that I stop creating struggle and start just creating in my life. Somewhere when I was young I took on a belief that life needed to be hard. I need to drop that belief and stop inviting that energy into my space. In reflection on that session I can totally see what she is talking about – it is time to get off the struggle bus. She also said I knew in my heart the path I believed in going forward with treatment and the bottom line is whatever path I choose I need to believe in it 100%. 

This is the mantra that was given to my through my session with Dee:

“I am living and creating a healthy, well, joyous, vibrant being of me until the age of 90and then I am open to creating even more.”

She did say she has never been asked to use the verbage “being of me”. I just like to spread my uniqueness throughout all my endeavors. 

I am really noticing where I need to wake up. I can see where I was going through the motions the last time around. I am still uncovering little nuances of how I was walking through the world in mind, spirit and body that may not serve me on a path to health. I am more prone to this little cell mutation called cancer than maybe the average human. I could call it a struggle I have been handed but really there have been too many gifts of awakening to call it a struggle. Also that mindset keeps me on the struggle bus. I have choices everyday, all day of how I choose to look at the present moment. I have really been given a second chance…. again. I am going to see my kids grow up. I am going to get to know my grandchildren. I am going to celebrate my 50th anniversary with my wife at 87. I am going to do a lot of f#*%ing things in my life with joy in my heart and mind because that is just how it’s going to be. 

This is my long update for now. In the next couple of weeks I will have a path. In the meantime I am staying positive and taking life in stride. As I said before- It is all just another collection of experiences. 

NOTE: Deciding to take the path of eastern medicine with Dr. Lu will be an expensive choice for my family. It is not covered by any insurance. I do strongly believe in this as a path to optimizing my health and to create a body that cancer will not return. As I said in my post my relationship with Dr. Lu will be about 5 years and at least one year of intense work and expensive herbs. I have been going three times a week at $110 a visit with his associates. To see Dr. Lu is $160 a visit. The visits alone for the first year look to be $17,000-$18,000. That is without paying for any herbal medicine, organic food, or other supplements. I am considering reaching out to my community with a GoFundMe to help us pay for Dr. Lu. I will continue with my check ups of CT scans and blood work through western medicine  at the hospital through my oncologist whether I choose to do chemotherapy or not.

Side Note: I came up negative on all genetic markers for cancer when I did the genetic testing. This is great news for my kids. 

Just a moment of our lives in the past month. I have taken to intentionally reading more fiction. And we are just trying to take time to be.

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