In some ways my cancer journey has ended, but in other ways, it has just begun. My husband was diagnosed with Stage III colon cancer in March of 2005. Or was it Stage IIB? The doctors could never decide, because his colon basically exploded, in the middle of the night. With no warning that he even HAD cancer. Our long trip down the cancer path together ended  April 29th, 2009 when he died in total serenity in his own bed with me by his side. No doctors, no nurses, no medical equipment, just the two of us together, doing this our way– the way we lived our entire life.

I’m starting this blog in large part because of a chance meeting with my husband’s surgeon, at my favorite surfing spot. More on the incredible good fortune of having a liver surgeon who surfs ( a very rare combination!) later… We talked about my husband’s death. It was a comment he made that really lit the fire under my already simmering idea of writing about our experiences:

“We really pushed the envelope of medical technology with him.”

My reply was that we always hoped that  what we all learned through my husband’s experience would benefit many other patients in the future. There is no question that others will benefit from what our surgeon learned. This blog is to share what we learned: about medical possibilities, about making the system work for the patient and family, and about  nurturing compassion, in ourselves and in our medical team.

We said to ourselves, over and over during  our journey,

If we’re  in the top echelon of educated, informed, proactive patients, and we can’t figure out why the medical system isn’t working for us, what about all the rest of the cancer patients who don’t have the resources, the time, and most of all, the energy to figure out their own options?”

This blog is for you, wherever you are…

Now to the meat of the matter: “pushing the medical envelope”. What was our surgeon referring to? Three letters: RFA. Stands for radio frequency ablation. It’s one of the few options left when your colon cancer has metastasized, when it has moved out of your colon and taken up residence somewhere else in your body. The next piece of prime real estate for  colon cancer cells is in the liver. The best option at this point is surgery– if the new tumor in the liver is amenable to surgery. In my husband’s case, it was. He had half his liver removed and a chunk of his colon taken out– at the same time, in a marathon 11 hour surgery with two doctors operating.

Once they’ve removed half of the patient’s liver, surgeons are generally reluctant to operate on the liver again if more tumors pop up. There is still a possibility of surgery, but the location of the new tumor is the determining factor. Another surgery was not an option for us. What was suggested instead was RFA. Basically, it involves inserting a probe directly into the liver and using radiowaves to effectively fry the tumor in place. The procedure is done by an interventional radiologist, who uses a CAT scan machine to visualize the tumor and ensure that the probe is in the correct location.  We came to have huge respect for the interventional radiologists at our hospital– these guys do amazing things.

RFA is a huge improvement over the shotgun approach of chemo. The radiologist can see the tumor, and kills just the tumor and a small margin around it. If he is skilled, no other tissue is damaged. He can confirm, with the patient still on the operating table, that he has destroyed the tumor. The patient stays overnight in the hospital and can usually go home the next day. Afterwards, it feels like a mild (or sometimes a major) case of the flu. There is none of the hellish psychological uncertainty of chemo– the radiologist either got it or he didn’t. It’s a one-time deal, as opposed to the  long, drawn-out anguish of chemo.

Here’s the real beauty of RFA for tumors in the liver: it can be repeated for new tumors. In John’s case, seven times. Our doctors told us that it is highly likely that my husband had more RFA procedures than anyone yet. We may be world authorities on RFA from the patient’s perspective.

I mentioned that RFA is done under CAT scan, which enables the radiologist to actually see both the tumor and his RFA probe. That alone is cutting-edge technology. In John’s case, his radiological team took their skill level several notches higher by daring to continue to perform RFA procedures even after John’s liver had been fried so many times that the CAT visualization showed only a field of grayness. Because the treated tumors remain in the liver as hyper-dense dead tissue, after a certain number of RFA’s,  CAT visualization becomes increasingly compromised. Our doctor’s solution was to more or less triangulate the location of the new tumor by using  internal markers from John’s previous liver surgery as guideposts. This required much more time and planning than the “standard” RFA, and it was a very gutsy proposition, but it seemed that his doctors were magnetized by this new challenge and quite amenable to taking the extra time.

John and I both had huge  respect for his radiologist’s technical skill as well as his compassion; we were confident that he would never have suggested this if he wasn’t certain that he could pull it off.  His pushing of the envelope of medical technology was successful– twice. John’s last two RFA’s were essentially done without his doctors being able to actually see the tumor they were trying to fry.

I should mention that John also had an RFA  procedure on a lung metastasis. Those, I suspect, are much less frequently performed that procedure on the liver. The danger is that the lung can collapse during the procedure. That happened to John. It required the insertion of a chest tube to re-inflate and stabilize the lung. In the big-picture perspective, this was just a slightly painful temporary obstacle. The tube was removed 24 hours later. For us, knowing that the cancer had advanced to this point, to still have a direct-kill option was monumental.

RFA. Remember those letters. A vital option for tumors that have spread to the liver and cannot be cut out.


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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  1. Tom and Rita Watkins says:

    Rachel, so wonderful so see what you are doing to salvage, from your experience and John’s, a positive aspect that can help other cancer survivors. We all do survive for a time, one that depends on so many things like treatments and just plain luck. Rita and I call your efforts at sharing your knowledge for the benefit of others “Typical Rachel!” We admire you so much and are so enriched by the times we have spent with you and sometimes John, both in Hawaii and Tucson.

    My three colon cancer surgeries and two courses of chemo are fading into the background as more time passes. It is 5 1/2 years now since last colon surgery and the frequency of my colonoscopes are decreasing. Also I am once again volunteering my time in Hospice, be it a lighter involvement than before.

    Rita and I look forward to your blog entries

    Much love from us both, Tom

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