TREATING ADVANCED CANCER AS A CHRONIC DISEASE

“Treating cancer as a chronic disease”

The first time I heard this phrase, I was taken aback, to say the least. It was during a chance meeting in the hallway with “our” anesthesiologist, who hadn’t seen us in a while and was kindly inquiring about how we were doing. I explained about our current self-devised program of no chemo, monitoring John’s CEA levels closely with regular blood draws, moving quickly to a CT scan whenever his CEA spiked, and then scheduling a RFA frying of any tumor that showed on a CT or PET scan. His comment was,

“This seems to be the new frontier of cancer, to treat it as a chronic disease.”

I was taken aback because at this point, we still had some hope that the tumors that seemed to keep popping up would cease to reproduce and cancer would be part of our past. That didn’t seem like an unreasonable hope, at that time. So to think of it as “a chronic disease” was definitely not a perspective we had entertained, at least not until now.

In retrospect, that phrasing was actually very kind, in view of the way our education as cancer patient and family continued in the oncologist’s office several months later…

Interested in reading more about what we learned about treating cancer as a chronic disease, and how we discovered that John’s oncologist was, ironically, not the doctor with whom to discuss our options as far as treatment?  Read about another much less painful, far shorter duration and more targeted alternative to the onerous “chemo for life” program John’s oncologist was proposing for him– an alternative never mentioned by his oncologist.

You have stumbled upon a rare opportunity to learn first-hand from another colon cancer patient’s four years of experience in navigating the colon cancer maze. It is compiled here, in an easily searchable format: http://www.amazon.com/dp/B004T3331M

Our doctors told us we were the most informed patient team they had ever encountered– yet we felt utterly lost a great deal of the time. Every cancer patient I’ve talked to felt the same way. We learned so much about The System, and how critical being  an informed patient is to getting the treatment you need, how to deal with difficult doctors, troubleshooting and taking charge of pain control– and so much more, none of which you will hear about from your doctor.

You owe it to yourself and your loved one to benefit from all that we learned the hard way.  This is the kind of information that, until the publication of this book, could only become part of your database by living through it and  realizing in retrospect how all the pieces fit together: colon cancer from the patient’s and caregiver’s point of view.  $9.99 seems like a very small price, considering the emotional and physical suffering you will likely be saved by learning from our experience.

Shedding Light on the Cancer Journey: Navigating the Colon Cancer Maze http://www.amazon.com/dp/B004T3331M can now be read on any computer or other reading device. The reader interface is available free from Amazon and is downloadable in seconds.

I will realize absolutely no profit from the sale of this book.  All proceeds from the sale of this book will go towards the support of the 400 monks, nuns and yogis in the seven Tibetan monasteries of Tulku Orgyen Zangpo Rinpoche, who have devoted their lives towards building the foundation for peace and freedom from suffering for all beings in this world.

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About surfingon

I live in Hawaii. I surf in the winter and swim in the summer. I have been a hospice volunteer with a contemplative-care oriented hospice for 25 years have been part of their team that trains new volunteers for the last 9 years. I have walked the colon cancer path with my beloved husband these past 5 years. He died very peacefully in April 2009. I now seek to share what we learned, to shed light on the many dark corners of this often mystifying, heartbreaking and heart-opening journey.
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3 Responses to TREATING ADVANCED CANCER AS A CHRONIC DISEASE

  1. Jenhopesprays says:

    “Our original impression that the oncologist was the go-to guy for all options in treating cancer turned out to be unfounded.”

    This is so true. They make a living off of chemo. We often need chemo so there is not a problem there. The most important decisions I have made have come from the research I have done.

    I’m so sorry you lost your beloved.

    Jennifer

    • surfingon says:

      Thank you, Jennifer. Your comment:”The most important decisions I have made have come from the research I have done.” is exactly why I started this blog. Sitting in the chemo treatment room week after week and seeing the frightened desperate faces of patients and families made me realize that few understand the imperative of doing their own research. Any light that our experience can shed on this path not only makes our own suffering meaningful, but hopefully lessens that of others in the future.
      Aloha, Rachel

  2. Steph says:

    Rachel,

    I’m making my way through your blog from the beginning. I feel a real kinship with you, your relentless research, your need to share. I too can’t imagine the experience of (probably) 90+ percent of cancer patients without dedicated advocates. You can look at my husband’s caringbridge to see where we are at. It doesn’t have very much as to all the wheels I have spinning on the side, but I intend to share all of that in a similar way to your blog when I feel more confident as to what actually worked, what things (in retrospect) were the turning points. Thank you for sharing. It IS important.

    Very best regards,
    Steph

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