Wholistic Fitness

Jamie, a superfit triathlete and my landlord, now competing with Ovarian Cancer, shown here a couple of months ago with a relative.

Jamie again, taken last week…one more Chemo Treatment to go…

Coach’s Preface:
Steve Carothers, and his wife, Jamie, are my landlords
here at 3-Chi Manor. this entry may take a few minutes to read,
however, like all these DL’s…it’s well worth Practicing the ‘old art’ of
reading. ilg Trusts this entry shall inspire your Gratitude and Grim Determination to Rise Higher in your own efforts in self-cultivation. Nothing, nothing, nothing is more priceless than health and fitness. so do as i tell you:
take your Sunrider Regenerative Whole Food Herbs,
take your MAP Amino Acids,
at least do your WF Early Morning Ritual each day,
abide as best as you are willing to the WF 4 Lifestyle Principles,
enjoy your self-paced rhythm among the WF 5 Noble Fitness Disciplines,
and read your DL each day…

***

Monday, April 20, 2009 10:52 AM, CDT

Eroding Spirits or Spiritual Rebirth?

Six Months of Ovarian Cancer: The April Update

* The Vitals: Cancer Antigen-125 score = (9 u/ml)
* The 8th and LAST Chemotherapy – May 11

By
Steve Carothers

Saturday 18 April. It really is dark and stormy out this early Saturday morning. Austin has received almost three inches of rain in the last 24 hours, there is supposed to be lots more to come through the weekend, and everything is shaping up for a good day to stay in bed. Jamie is in her comfy boudoir with a favorite book propped on her lap, her dutiful man-servant having placed her morning’s hot tea within reach, her burgundy down comforter pulled up to her neck and her fuzzy bald head and those cute pixie ears dominating the scene. She is happy this morning and only a tiny bit of chemo-laced gastrointestinal discomfort distracts her from Nancy Horan’s Loving Frank.

I have been avoiding the writing of this update for a couple of weeks, but the untold story is never far from my thoughts. In so many ways I wish I had never started this journal, this uninhibited sharing of the most personal of details of our lives and Jamie Dickey’s life/death struggle with the “silent killer.” It was one thing to share the details of her sudden surgery, her strength of character, her relatively rapid recovery, the dozens of supporting friends and family, the cool medical staff, chemo class and the like—but even then, somehow, we were a little detached from the reality of what was really going on. Let there be no doubt, Jamie was well aware of the surgery and the hideous nine nights in the hospital, the gaping belly wound that would not close, the pain, the scars, the uncertainty of the five months of chemotherapy to come, but now we are closing in on the aftermath and I don’t really want to talk about it any more. Yet, here we are going on six months post-surgery, and this family unit, while showing some serious wear and tear is nonetheless getting back to some semblance of normalcy. This cancer thing is not even remotely fun to recount, to think about, talk about, or even less, to submit to the temptation of peeking into the future possibilities, like the end of this story so-to-speak. How does it end? We can’t help but wonder that every day.

Sunday 19 April. I (we) started this journal with the intent that we would share our “love” story of tragedy cum optimism through the CaringBridge site and thereby mostly keep family and friends updated on Jamie’s recovery. As the process began to unfold and we searched for information on what was ahead, we found very little of the information we felt we needed. So as the CaringBridge site got some steam we also saw the opportunity to provide something of a cosmic roadmap for those who have yet to go through the ordeal. It must be different for each patient, for each caregiver, but I guarantee there are similarities in shared emotions within each family when out of the blue moms and dads and sons and daughters are forced to come face to face with a potentially mortal disease in a loved one. As the months have gone by both Jamie and I have become more and more aware of dozens of friends and relatives that have endured or are enduring, so many horrific forms of cancer, and they often endure alone. Most of the cancer fighters and survivors we know don’t have the benefit of the catharsis of the CaringBridge Journal or the loving support of the Guestbook. So like it or not, I have a responsibility now to complete this month’s addition to the Journal. Family and friends are conditioned to get these updates and I can’t stop now, no matter how attractive slacking would be to a couple of my mostly hidden personalities. Jamie’s mom and dad (who is also in a pitched battle with his own cancer) anxiously await these updates. Some things are just to hard to talk about on the phone. And, since it is too wet to ride my new Turner Sultan 29er and I have a couple of hours before meeting Alan for our Sunday kayak, I’m going to buck up and get this report on Lady Jamie out of my head and just deal with the consequences. One bloody step at time, eh?

Jamie could not get her 7th Chemotherapy treatment on schedule on the 6th of April. We were all warned that she would not be strong enough to have the treatment. The medicos knew that it would be very unlikely when they first set up the schedule, but because they have their own standards and their own opinion of what we needed to know for our own good, they obfuscated on a few details in the early days of revealing what we were to expect during the cancer cure. Maybe it was for our own good, but it still irritates me a little. There are some other “details” they failed to mention too, including the possibility of potential permanent damage from the chemotherapy. Jamie had the 7th chemo treatment just 6 days ago on Monday the 13th. The Cancer Antigen scores have steadily dropped, from over 2,200 right after surgery to last week’s score of 9u/ml. Incredible response, the treatment, her strength, almost everything is going as well as it possibly can. We will return to the almost.

Jamie is getting pretty good at taking the treatment protocol and associated drugs, but one thing she learned about three treatments ago was to be very cautious about taking the anti-nausea drugs prior to getting any nausea. Many times in the early days of the chemotherapy we knew that there was going to be a general pattern of “chemo on Monday, hell to pay on Thursday.” Our good friend Nora had the treatments a year in advance of Jamie and her recollection was that the first couple of days after chemo, were not so bad, but the body’s reaction to the chemicals began to peak in pain by 3 to 4 days post-treatment—and so it was with Jaime for the first 3 or 4 treatments. While it was sometimes hard to distinguish the pain of chemo from the original surgery and the healing of that trauma, the chemo clearly exacerbated her discomfort and provided its own suite of unpleasantries. Once she learned that the anti-nausea drugs had their own nasty consequences, and she stopped taking them, the chemo experience has not been as bad.

Friday she felt strong enough to go to one of her dozen “best friends” birthday party—Jana Fain turned 40 or something like that, maybe 50 (she sure looks good for an old gal). While Jamie can’t hang like the party girl of her youth, she was able to mingle and join with her friends, in a social interaction that this social lady apparently uses to recharge her psychic batteries. Then Saturday night we had an intimate dinner at Pam Blain’s place with some of the “hood” friends, then today Jamie got in her kayak and paddled Lady Bird Lake for an hour, and tonight we go to another dear friend, Jennifer Tull’s for another gourmet dinner organized by Jen’s man, John Shobe—life is getting back to normal.

Ovarian Cancer Factoids

Peripheral neuropathy: chemo’s side effects. Peripheral neuropathy is a term used to describe damage to the nerves that are outside (peripheral) the brain and spinal cord. Some of the anti-cancer drugs can cause nerve damage, and it can be permanent. I am reminded of that permanence by the nagging presence of what seems to be a perpetual tingling at the back of my neck—nothing more than nerve damage from an especially irritating bout of shingles 4 years ago. My shingles caused some peripheral neuropathy, and chemotherapy seems to have done the same to Jamie, but so far her neuropathy may not be permanent. The manifestation of the malady in Jamie has been expressed mostly in her hands. She is sometimes bothered by a numbness, and a tingling sensation, like a hand or foot trying to awaken from having gone asleep. Ironically, while her limbs seem to have gone asleep, the associated pain often keeps Jamie tossing and turning and she goes without good sleep These pains we now know are not uncommon in the cancer patient and they are caused by the platinum and taxol based anti-cancer drugs she gets during chemotherapy. Interestingly, the drugs interfere with the transmission of electrical impulses and the production of the body’s own nerve ending enzymes that allow impulses to move from nerve to nerve. The longer the nerve the more the potential damage (hands and feet have some of the longest nerves in the body). She has also been recently plagued by an irritating “ringing” in her ears, that also may be a side effect of the treatment, but I find nothing on-line to verify this.

Why does the cancer come back? A depressing little factoid that we try not to think about is that a little less than about half the women with ovarian cancer survive longer than 5 years after diagnosis. I’ll never forget Dr. Teneriello looking me square in the eyes in the hour post-surgery and saying “I bought you a lot of time.” Jamie’s sister Lisa and my friend Terry Jones were there at the time and we all traded glances, but given our gratitude that Jamie survived the operation, none of us asked if he wouldn’t mind going into a little more detail. Well, as it turns out there has been a bit of a cancer mystery about the pattern of the ovarian cancer “reactivation” that may have recently (December 2008) been illuminated by the geniuses at M.D. Anderson Cancer Center in Houston.

We know that prognosis and survival of ovarian cancer depends largely on how much of the tumor is left at the time of initial surgery. Dr. Tenerellio told us in that same hour he said he bought us some time, that he got 99% of the cancer. He mentioned something about “lesions” on the liver and the aorta that he could not get, but the 99% sounded pretty good. What we now know is that patients who have no remaining tumor or with cancer nodules that are less than 1 centimeter in diameter have the best chance for cure and long-term survival. While I have not had the courage to ask Dr. “T” if any of the 1% was equal to or greater than a centimeter in diameter, I just assume that nothing larger than a snow pea was left in Jamie after the surgery. I just found out that the “reactivation” mystery, up until now, has gone like this: Dormant cancer cells are the huge issue in stifling the remission of many forms of cancer. Why if some of the cancer was missed and dormant cells are left alive, does it typically take 2-3 years for the cancer to return? If, after chemo stops, any cancer cells were to continue to grow normally, they should have returned in weeks or months, not lain dormant for years. This mystery has been somewhat solved. It appears that the expression of a single tumor-suppressing gene ARHI (Aplasia Ras homolog member I—how do they name these things?) that is under expressed in 60-70% of ovarian cancer patients is to blame. There is a very complex interaction within the cancer cells that allows the unexpectedly long dormancy that may now be understood, and there may be a mild drug therapy that can keep the little bastards asleep—this is all very new, all very encouraging.

So, we will take our “guaranteed” 2-3 years, maybe avoid dairy, accept all form of prayer, burn some sweet grass, put notes in a bottle on Lady Bird Lake, and perhaps even sacrifice some Mexican free-tailed bats on the full moon. We will try anything, and you can take that literally. Jamie continues with weekly acupuncture and massage, and to the mix we have recently added a family therapist to facilitate honest conversation in the face of the grimness. Most of all though, we really work on staying optimistic—and this is not all that easy any more. After 6 months of Jamie’s pain and our mutual fear of the unknown, our confidence has devolved a bit around the edges. One more chemo treatment. Stand by for more.

***
COACH RESPONDS:

Namaste Most Noble Warriors of the ChemoWard,

wow.
another masterful entry, Steve. i bow. as your HeartSpace opens in unity with Jamie’s ‘gaping wounds’ closing, a glorious, if cloaked, symbiosis arises. thank you for the courageousness in sharing.

and Jamie! to my eye, your muscles are holding glycogen extremely well which speaks of superb physiologic hard-wiring…surely a training effect from your sweat-based lifestyle!

one my Dharma Teachers told a young ilg,
“Just as man and his powers are called separate,
but in reality it is not so,
and to the contrary the power is the expression of the
man.”

Screw the statistics, is what comes to my spirit, as i read Steve’s words in CaringBridge.

I mean, really, how many Ovarian Cancer patients are packing your amount of fitness,
of chi,
of Love?

As i take leave of this amazing cyber desha (gathering place),
coach ilg has one thought left flickering for Jamie;

One more Chemo Treatment and, hate to tell you, you’ve got to start training to win 7 consecutive (womens) Tour de France as did a certain former triathlete turned road racer who hails from Austin once did…
and is
still doing…

i’ll be happy to train with you
out here,
beneath our resplendent Sacred Peak.

yesterday, Joy, Dewa, and i planted strawberries near the shed.

endlessly in spirit…

steve ilg