WHAT YOUR ONCOLOGIST DOESN’T TELL YOU ABOUT CHEMO

This chapter was inspired by a conversation with a neighbor who was describing the difficulties  of her friend who was taking the chemo road. She commented,

“Sometimes they get so angry and mean, you know…” .

That sparked a memory of a really baffling aspect of John’s chemo: he often seemed unreasonably euphoric on the drive home after a four-hour infusion….

The second aspect of John’s puzzling behavior was what my neighbor was referring to: the rages. They were extreme and had an uncontrollable quality to them that was  unlike anything I’d seen in 40 years of marriage

How I figured out the cause of these mood swings, verified my suspicions with an oncology pharmacist, and learned to deal with them is the topic of the remainder of this chapter in  Shedding Light on the Cancer Journey, my newly-published E-book now available on Amazon: http://www.amazon.com/dp/B004T3331M

I can’t tell you what a huge relief it was for both of us to understand what was going on with the mood swings. It was infinitely preferable to wondering if the cancer was moving into John’s brain or if he was in the process of losing that brilliant mind that was such a part of who he was.

The somewhat disturbing aspect of this deduction on our part was that it was very probable that we would have never reached this basic understanding without my hospice background AND my extensive note-taking. It is horrifying to think that other cancer patients and their families suffer through these alarming changes  with no understanding of what is happening. For all you chemo patients out there: I’m hoping to shed some light on your journey.

This and much more about this cancer journey that can only be learned through hard experience is now available in an easy-to-search format that can be read on any PC or Mac, Kindle, Blackberry, Ipod Touch, Ipad or Android. The reader interface is available free from Amazon and is downloadable in seconds.

One simple question was my guidepost and motivation in writing this book: how can what we learned– about the medical system, dealing with arrogant doctors, about the treatments and side effects, about coping, pain control — how could  I present all of that in a way that might be helpful to other cancer patients?

I will make no profit from the sale of this book. All proceeds 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. It was their prayers and the gentle guidance of Tulku Orgyen which so profoundly influenced John’s ultimately serene death.

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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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7 Responses to WHAT YOUR ONCOLOGIST DOESN’T TELL YOU ABOUT CHEMO

  1. Annette says:

    Good points, I think I will definitely subscribe!🙂. I’ll go and read some more!

  2. SaveMyArchie says:

    It sounds like we share similar traits! I’m a compulsive note-taker and researcher and finding this blog is more helpful than you can imagine. Thank you for documenting this for others.

    -SaveMyArchie (Colon Club username)

  3. I just found your blog and am so excited! I’m a newbie at all this. My 50yr old husband was just diagnosed at Thanksgiving with stage 4 colon cancer with mets to the lymph and liver. I know it’s going to be a long road, but after he suffered a cardiac arrest last week due to the 5-FU, I decided I needed to put my researching skills to better use! I need to be more informed, and your blog is an amazing resource. I’ve only read a few articles so far and already feel like I have a friend who really gets it that I can turn to. Thank you for taking your tragedy and putting it to good use! I can’t wait to get home from work tonight and read on!

    Mahalo! (I love Hawaii!!)
    Julia

    • surfingon says:

      Julia,

      I’m so glad that you’re finding that our experiences are illuminating your own journey. If you haven’t already done so, I strongly recommend that you join the most-excellent Colon Club forum: http://coloncancersupport.colonclub.com/viewforum.php?f=1
      There you will find many Stage 4 colon cancer patients and gain the benefit of the perspective and experiences of many others besides myself.

      Blessings on your journey,
      Rachel

      • Julia Gallagher says:

        Rachel – thank you for sharing your wisdom and insight and for passing on the link to the colon club forum. As I’ve read more of your blog tonight I feel sad about some of your really crappy experiences with your oncologist! It’s a good reminder to me to remember how blessed we are to be where we are. I work at Mayo Clinic…so my husband has world class care with the most caring and compassionate people you could ever meet! We are so blessed – thank you for that reminder!

        Julia

      • surfingon says:

        While it is true that some of our interactions with some of the doctors and nurses at our hospital were less than satisfactory, John and I always kept out focus on the overall quality of the care he received– and when the pluses and minuses were all tallied up, the absolutely outstanding, above-and-beyond compassion from the many definitely canceled out the shocking insensitivity of the few. And then there was the additional satisfaction of knowing that had our way with some of those who were initially emotionally distant/ arrogant, and actually converted some of them into more compassionate, caring human beings.

        In the end, despite the obstacles along the way, we both felt that we had received both very high-level, cutting-edge medical care that was often highlighted by great kindness.

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