Journey To Wellness

Hello, Colleagues, Friends and Acquaintances, and Family!

Below is a description of a journey I’ve been on in the course of the last year.  If you are inclined, I invite you to join me on this journey to whatever extent is possible for you.

Thank you for giving this your time and attention!



MY PROJECT and GOAL~ 

*Please feel free to share with colleagues, friends or family*

By way of introduction: 
Over the course of this last year I have had conventional cancer treatments for leiomyosarcoma. The treatments have been covered, for the most part  by insurance. While this has had some success, I was also informed from the beginning that the treatments would not 'cure' the cancer. It was clear to me that I would needed to augment conventional treatments with ‘alternative’ treatments, medications and therapy, as well as with lifestyle and dietary considerations. Since any curative measures beyond conventional treatments are not covered by medical insurance, it has been a challenge to pay for them with limited resources. 

My goal now is to intensify and increase the use of alternative treatments and bring an end to the conventional treatments, given the long term side effects they can incur. This is both an ambitious goal and a modest one.  It is ambitious in that it will entail periodic therapeutic retreats/treatments, as well as ongoing maintenance of medications.  It is modest in that the wider the circle of colleagues, friends and perhaps friends of friend and family that can be reached,  the easier it might be for individuals to consider participating in this project without it imposing undue hardship. It is difficult to envision the time-frame of this project. To begin, it may be realistic to think in terms of six to nine months at a time.

There are remarkable testimonials of people having had incredible results in mastering cancer with alternative treatments--particularly through ‘immunology’, an increasingly successful approach to cancer treatment for the future. Also, that there are a growing number of  integrative oncologists who are recognizing and taking up this approach of treatment is a testament not only to its effectiveness but to its becoming ever more an accepted part of the medical establishment.

Unfortunately it’s not yet part of the medical insurance establishment. 

So this is a story about a journey towards healing and wellness and about inviting others—who are so inclined— to participate in this journey.

MEDICAL SITUATION:

A bit over a year ago, at the beginning of July of 2017 I was diagnosed with leiomyosarcoma, a rare cancer of the muscle and soft tissue. Characteristically, it is fast-growing, aggressive and not very responsive either to radiation or chemotherapy treatments. At the time of the diagnosis, the cancer was in the fourth stage; it had also metastasized to the lungs.

Since August ‘17 there has been a series of radiation and several series of different kinds  and strengths of chemotherapy;  the chemo treatments continue for now. But parallel to this I have also been having natural and homeopathic intervenes infusions and injections that support the immune system and counter the negative effects of the chemotherapy.  Dietary and life style considerations have also factored in.

As of now, the CAT-Scans, PET-Scans and MRI indicate that the situation is stable:  there has been a reduction in the size of the tumors and the spots on the lungs have deminished significantly.

Financially, for the most part, insurance has been able to cover the conventional treatments.  However, it is also becoming clear and more urgent that more intensive and concentrated use of alternative treatments are necessary.

Medically speaking this lies in the realm of immunology and integrative oncology. These are proving themselves to be effective and profoundly life changing approaches to treating cancer. While some of these treatments are slowly becoming an accepted protocol in the medical community, most of them are not covered by insurance. This means they have to be paid for out of pocket.

At the time of my diagnosis, I was informed that the treatments I would be getting (radiation and chemo) would not be able to ‘cure’ the cancer, given the nature of this cancer.

I had decided at the time to include an alternative protocol as much as possible,  going parallel to these conventional treatments; this has been done to some extent with limited resources. It is becoming clear that in order to move forward—to enter a new phase towards healing—these alternative modalities will need to intensify and make possible a phasing out the chemo completely.

A colleague suggested that I create a Crowd Funding platform to help support these on-going alternative treatments in this new phase and strategy— on this journey towards healing.

BIO

In the process of setting up this crowd funding platform, a member of my little support team suggested I needed to become a bit more personal in reaching out, so people could get a sense of where all this comes from, of where my striving and engagement in life has taken me.  Well, sharing a bio is not so easy or straight forward.  I've been putting it off for more than several weeks, especially in light of trying to reach a significant number of people, and not necessarily those I knows well, or haven't met.  It's definitely not like sitting in a cafe and sharing something of your life with a close friend, where you can look eye-to-eye.....I think you know what I mean.

None-the-less I'll give it a try, because I understand what was being suggested--the two sections above on 'Projects and Goals' and 'Medical Situation’ are pretty matter-of-fact. And after all, if I invite you on a journey it's only fair that you should know something about me.

So I'm going to try and set the scene for a few little vignettes of this life:  I invite you to a virtual cafe, with the risk that it might become personal, hopefully not too boring, and maybe can offer some inspiration. With this you're obliged to be the listener....

There are three guide posts that will frame this story:  The first is how I've found myself inserted into life...with people, places and social engagement; the second is how my ideals and aspirations have led me through these situations; and the third is how economic circumstances play into all this. There will be an interweaving of all three, not necessarily clearly separate. 

Back in the eighth grade I recall a conversation with a few peers; we were discussing and searching for an alternative to the socialism/capitalism dilemma. We knew there must be a third way.... At the same time we were acutely aware that the Cold War was going on...how could we not be? This situation became a growing, nagging, subtle burden throughout the coming years of adolescence..... But even before that, in the mid 50's, signs directed to 'fallout shelters' were being placed on schools and other public buildings for seeming protection against a possible impending nuclear attack......and later I can recall overheard my father discussing the end of WW II with a friend--saying how American journalists in Germany knew more about the concentration camps than most Americans and of how oblivious Americans were of the Holocaust. 

Then, in 1961, the trial of Adolf Eichmann was televised live around the world. Americans were granted the opportunity to witness the reality and horror of the Holocaust. For us as teenagers, this was profound, witnessing an example of evil before us. (Only later did the term ‘the Banality of Evil’ become a realization to me.) Three months later, in August, '61, the Berlin Wall went up....The world was becoming ever more senseless, grim, burdensome. 

Then, thank God for The Beatles, who arrived on the scene !..... with their new harmonics, and lyrics that were right on, that told it like it was and unsettled the complacency of the post WW II gold--rush into materialism. This wasn't exactly comic relief, but it did usher in a refreshing breath of fresh air of possibilities to what was becoming increasingly dead-end gridlock in the social and cultural fabric of America. 

In 1962 I received my social security number. I was still in high school. I hadn't read 'Brave New World" or "1984", but I distinctly remember feeling something about my identity had changed...with a number attached to my name. It was odd and it was a significant moment.... Now a-days this would probably seem quite insignificant, considering the epidemic use of social media. 

My first summer job in high school, was working as a nurses' aide in 3 different hospitals in the course of three summers, with the aspiration of saving for college. I loved the work and the contact with the patients and nurses. The first hospital had an ingenious program that allowed me to work in conjunction with going through the training so that, at the end of the summer, I had a certificate, had gathered some experience and self-confidence and a little money in my pocket. I was given a lot of responsibility--at times beyond the usual. It was an 8-hour day, 5 days a week. In 1962 a nurses' aide received $.65 an hour. It didn't pay for college but I loved the work!

One evening, working a night shift, news came into the hospital that the United States was on the verge of a military confrontation with Russia--the Cuban Missile Crisis; we were holding our breath and waiting for an announcement from President Kennedy as to what would transpire.....

....... Fast forward into the late '60's and on.....in spite of my awareness of current events in high school, I was not really inclined towards political activism. So the Viet Nam War, the Civil Rights Movement and even the Environmental Movement begun in the ‘70’s, were peripheral to me--not that they weren't relevant or meaningful, but that I probably felt too naive and ineffective to effect change. So I focused on what I thought I could do with some positive results ...working with children--those with special needs as well as so-called 'normal' children, helping to craft and build intentional community, and embracing the arts as a way of healing social aberrations and challenges..... And this has been very much my journey's path ever since.

There are some milestones that effected me profoundly, that I still want to mention, events that were imprinted onto the collective conscience of most Americans and the world at large who were aware of their significance in making us into a world community, in recognizing our common humanity. They are:

~ the Tiananmen Square Standoff '89 
~ the fall of the Berlin Wall '90 
~ the arrival of Gorbachov on the world stage who midwifed the end of the Cold War, Peristroika and fall of communism '91 
~ the International Criminal Tribunal in the Hague for war crimes in former Yugoslavia,  1993-2017 
 ~ the genocides in Rwanda '94 and Bosnia '95
 ~ the Truth And Reconciliation Commission of South Africa and the end of
apartheid '96

These events, among others, marked a shift in a collective conscience that I was a witness to along with so many in my generation.

.....And now fast forward again, to the present....It is so difficult not to politicize everything these days, not to polarize, when what one observes seem so much more extreme,  when truth and civility becomes more and more rare and veiled in this ultra-super charged culture.

I look forward to contributing fully to upholding sanity, fostering beauty and a harmony towards peace for our common humanity as we move forward in these next years, ushering in a new generation, and creating changes and progress for the Good.

Who doesn't want to be on the right side of history? 
Who doesn't want to support the striving for the freedom of every human being? 
And who doesn't want to craft a third way of creating a social and cultural life that is not a relic of the past but fosters a future founded on brotherhood, individual freedom and dignity for all of humanity?

There's an interesting exercise I have on occasion afforded myself to practice, which causes me to wonder and give pause:  comparing the salary of a nurses' aide making $.65 an hour in 1961 to a 20ish- year- old dot com-er multi-millionaire of 2018..... How 'the times they are a changin'. 

But oh, it's so right to be a part of these times!


If you are so incline, I invite you to join me, on my journey towards healing.
Thank you again!

Johanna Rohde