Musings by OZ

Last week I met with a doctor at a Cancer Szpital (hospital) that had previously declined treating me due to my lack of insurance. Based on my past experience with language issues at this Szpital I arranged a friend to tag along and translate to help make the process a bit easier for both sides.

As the doctor walked into the room we all stood up to shake hands and I gave him my best dzień dobry (good morning) to which he replied in perfect English, ” You don’t require a translator because I can obviously speak English very well, as you can hear.”  I looked him in the eye and in all seriousness I said “Przepraszam (excuse me), I’m sorry but I didn’t understand a word you just said.”……… A moment passed leaving me wondering if I just made a joke at the wrong moment, not the first time I have wondered this, as I was pontificating my history of ill timed jokes the doctor smiled and laughed and we shook hands again as we headed into his office where we had the best meeting that I have had with any doctor in any country since I was diagnosed three years ago. 

Last Friday I had a bone marrow biopsy, it took half a year of being declined by other hospitals in Warsaw Poland including this one but they have figured out how to work around the insurance issue and have decided that they are able to treat me. The bone marrow biopsy is the first step in the process. This is not a matter of settling for the first doctor or hospital that came along. The fact is that this is the place that all the doctors I’ve spoken to have suggested as the best Cancer hospital in Warsaw. Because of my lack of European Health Insurance this has been a long process and it has been very difficult to navigate the Polish health system but thankfully there have been many people that have helped me on this journey. The only way this was possible was with the help of some local friends here in Poland that stepped up and put a lot of time and effort into the search. Many phone calls and emails were sent on my behalf by a small group of friends, some of which I have never even met in person. The help that I have received by this group of new friends here in Warsaw was an unexpected gift, quite a few people went out of there way to help in my search for a doctor that was willing to treat me, without this help I would not have been successful. I am humbled by the help that has been offered to us, there is so much love in the city of Warsaw!

My new doctor who is my age give or take a few years and has such an enthusiastic attitude towards helping me not just to beat this cancer into remission but he believes that with the latest developments in hematological medicine that he may actually be able to offer me a cure. 

When I was first diagnosed in the US the only option that I was offered was to receive chemotherapy or die, I chose life, I chose chemo. This time it is different, I have now seen multiple doctors in two countries, I have visited with professionals in both western medicine and alternative medicine. I am living a healthier lifestyle more so now than any time in my life and I feel fantastic, I feel healthy and full of energy. I initially thought that I would continue this path towards beating this cancer the natural way by combining diet, exercise, natural herbs and essential oils. Unfortunately even though I feel great there is one thing that has not changed for the better, my swollen lymph nodes. When I arrived in Poland last year the nodes under my arms were barely palpable, they were the size of grapes. These grapes have grown and are now the size of eggs, not quail eggs but big ole’ goose eggs and they have multiplied. The obvious ones are under my arms but scans show that they are throughout my body, everywhere, and they continue to grow.  

A decision needing to made, a choice of paths, should I travel the alternative path or the western medicine path?

I believe that if I continue down the path of attempting to beat this cancer the natural way without involving western medicine that my overall health will continue to improve. I believe that I will indeed continue to feel better than I have in many years. I also believe that if I choose the alternative path that at some point, a year from now or ten years from now that this path will have led me to a dead end, literally.

I can change my lifestyle and diet until I am a perfect specimen of health but I don’t believe that this will cure the cancer, it will slow the growth of the cancer, but it will not cure the cancer and eventually the cancer will win, and this is not an option. 

I understand that there are many alternative medicines in the world that people claim can cure cancer and we have researched many of them including diet changes such as vegan raw and Ketogenic as well as other alternative medicines such as THC, CBD, Essential Oils of various kinds, Ayurvedic herbs and even baking soda therapy or Blue scorpion venom from Cuba. I have Lymphoma which is a cancer of the blood, it is not contained in a specific place or organ in my body, it is everywhere and for this reason it is an extremely difficult cancer to cure. After researching many alternative medicine approaches I know that the majority of them are targeted to specific types of cancer and these specific types of cancer don’t generally include blood cancer.

Can I take a year, two, three five years to test the theory that alternative medicine will cure me?

If I choose that route and am successful then life will be good but if I choose that route and am unsuccessful then I will be dead. It’s a big risk that I am having difficulty talking myself into taking. 

Having said this I have still yet to make a final decision but I am leaning towards western treatment combined with alternative medicine. A healthy diet and a healthy lifestyle will possibly dampen the impact of the treatments that I will have to go through. I believe that combining a healthy lifestyle with the latest in cancer treatment technology will give me the best chance to live a long and healthy life.

We are now waiting for the results of this bone marrow biopsy. Once the doctor has these results in hand he will research all of my options and will share with me the pros and cons of each option as well as the costs. I did not have the luxury of having options when I was first diagnosed. Unfortunately, I believe that insurance companies don’t offer all of the options that a patient may have, they always offer the least expensive options first. I don’t blame my doctor in the US for not giving me choices, his hands were tied,  I do however blame the bureaucratic nightmare that we call a health care system.

I understand that there are risks involved with western medicine, many risks and side effects that are often worse than the side effects of the cancer itself.  I have already experienced six months of chemo, surgeries and radiation, I know what I am getting into yet I am still considering that this is the right path for me.

 My doctor in the US has once again offered me one road, one option, he suggested that I should do the exact chemo treatment that has already failed me and if that fails I should repeat it …. yet again, and if that fails then my insurance will consider whether or not I qualify for bone marrow transplant treatment or a new stem cell treatment called CAR-T Cell Therapy. With my US insurance I would have to fail at chemo 2 or 3 times before I would qualify for bone marrow transplant. I would spend the next decade repeating chemo before I would qualify for a treatment that gives me the best chance of finding a cure. I was told that this new CAR-T treatment is not even available in Europe, this, as it turns out is Fake News, it is not only available in Europe, it is available in Warsaw and is a potentially viable option for me. 

When I explained to my new Doctor the protocol that my insurance company has put in place for cancer patients such as me he couldn’t believe that it was true, he couldn’t understand why I would be asked to repeat a treatment that put my cancer in remission, with so many negative side effects, for only a couple of years. Essentially the treatment that is being offered to me in the US is a temporary fix.

Ginny and I spent more time with this new Doctor than we have spent with any doctor in the past, he patiently answered every question we asked with answers that we could actually understand. We also talked about the after effects of my last treatments which I am unfortunately still dealing with. His opinion is that the worst side effects that I had were caused by one specific drug that I was given. It is commonly known among cancer doctors that this specific drug is one of the biggest culprits for ongoing medical issues caused by chemo and he will avoid prescribing this particular drug to me.

I was asked what my goal was, I have never been asked this by a doctor. I told him that the last thing I want to do is put my body and mind through a treatment as I have already done that will only mask or slow the cancer, I am not looking for remission, I am looking for a cure. I told him that I would rather take the long road and that I am not looking for a quick answer, I am willing to put the time and effort into a treatment that has the greatest possibility of leading to a cure. This was the answer that the doctor was hoping for, when he heard this he got a twinkle in his eye, I could see that I had offered him a challenge and the challenge was excepted. He suggested that chemo alone was not the answer, just a stopgap measure. By combining chemo with a bone marrow transplant or even better the new CAR-T  treatment offers a better possibility of curing my disease.

I am not excited with the possibility of going through another 6 months of chemo combined with bone marrow or stem cell replacement, as it is not an easy road to travel.  I am excited about the possibility of finding a cure for my cancer. I am excited about living a long and healthy life with my wife by my side living life to it’s fullest.  I am still young and I have time, I can invest another year of my life if it means that I will live a long and healthy life.  I am also hopeful that by sharing my thoughts of my journey with cancer that this may help someone else that is suffering with this disease by learning from my experiences.

The direct path is not always the answer, sometimes the best rewards are found at the end of a bumpy road. I have been on this bumpy road for 3 years now, lots of starts and stops and unexpected detours. Just up ahead around the next curve I hope to reach the end of this road and with my wife by my side I will start a new wonderful journey.