Love on Ottomatic

Chemo Week One…

 

I started chemo last Tuesday, 1/22; although the last week hasn’t been ‘easy’…it’s been a lot less traumatic that expected!  Actually, the expectation and the ‘not knowing’ were the worst parts in the end!  Heading into chemo, I was carrying a lot of expectation about its possible effects on me and what the experience would be like, after all, it’s pretty scary stuff and most of what I’ve heard about it in my life has not been very positive.  That said; I really tried to head into last week with an open mind and open heart, knowing that whatever it was like I’d make it through it with the Love and Support from all of my Friends and Family…that much was sure.  As it has been at every step of this journey…Give thanks!

 

So, Tuesday morning we went over to the UCSF Infusion Center for my first dose of FOLFOX.  As I mentioned in my last post, it’s delivered via an IV for about 4 straight hours and then via a small mobile IV pump for another 48 hours.  My ‘chemo nurse’ was great; his name is Bruce, he was equal parts Cason Kressley and Lyle Lovett!  But all heart, and he really made the day as easy as possible.  The ‘Infusion Center’ is a nice enough place considering everyone there has cancer and is receiving chemo, or there to support them.  Indra and I were joined by my sister Elana, the Nurse, who came up from San Diego again to make sure the first round of chemo was manageable for us both…Give Thanks!

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Yesterday was the first day of Chemo for Otto.  He is handling it well and will need your thoughts and prayers at this difficult time.  Send some healing energy his way!

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Start @ the Beginning~

 

The problem with chemo is…it’s TOXIC!  Unfortunately, it is also one of the only proven cures for cancer.  From the beginning I’ve had some reservations about just signing up for chemo and hoping for the best.  The thing that I was struggling with the most is the Systemic, Non-Specific, Toxic nature of the therapy.  I know the term ‘chemotherapy’ is a loaded word; and some people, me included, have an immediate negative reaction to it.  Well, here’s what I’ve come to find out that has helped me understand it and its role in my treatment a lot more clearly. 

 

The way chemotherapy works is pretty simple; Its typically a mixture of several drugs called cytotoxins, or “cell-killer”, chemicals delivered through an IV in high doses.  The good news is that these cytotoxic agents are really good at killing the quickest dividing cells in the body, and since cancer cells divide much more rapidly than healthy cells, it gets them first.  On the down side; they also kill the quickly dividing healthy cells in your body, like hair follicles and cells in your digestive system.  That’s where the hair loss, nausea and other nasty side effects come in!  So, wouldn’t it be great to have some idea of exactly which cell-killing drugs have the best chance of killing the tumors in my body?  It does to me too…unfortunately; the way the “Standard of Care” is developed in the US health system this is not a priority among most oncologists.  In order to develop a standard chemo protocol for a class of disease, like ‘colon cancer’ for example, it makes most sense to the medical establishment and drug manufacturers to develop broad protocols that are most likely to help most of the people most of the time.  In the case of colon cancer, the protocol is called FOLFOX, sounds cute, but it’s not! It’s a mixture of three cancer drugs that is the current “Standard of Care” for stage IV colon cancer. However before I could commit to FOLFOX or any other chemo protocol I really needed to know if it would work, for ME.  Until very recently there was no way to know if the drugs in a chemo protocol would work on YOUR tumors until you tried it for a few months…can you imagine enduring months of cytotoxins injections and their side effects only to find out that your tumors were ‘resistant’ to the drugs chosen?  Yeah; bummer dood! 

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Are we there yet? 

After two straight weeks on the road, the last thing on my mind was another cancer road trip.  But, I was still lacking complete answers and I had yet to meet anyone that could really help me integrate all of this information into one cohesive ‘Protocol’ that made sense and just plain felt right.  Seriously; I was starting to feel like a proper Cancer-Carnie …taking my act from town to town!  Then, I read an excerpt from Kris Carr’s book Crazy Sexy Cancer, in it she quotes a 2003 National Cancer Institute study that states “Patients who traveled 15 or more miles for their care had one-third the risk of death of those living closer. Moreover, for every 10 miles that a patient traveled for care, the risk of death decreased by 3.2%”. Thanks Audrey!  So; what does all that mean?  A couple things; first that not all ‘care’ is equal, so getting out there and finding the best pays off eventually…and secondly that people who are proactive and keep searching until they find what sounds and feels right to them have a much better chance of KICKING cancer’s ASS!  So; try to picture my little cancer cells as Kareem Abdul-Jabbar and all of us as Bruce Lee in their classic battle from the movie ”Game of Death”…he is a MONSTER opponent, but our Kung Fu is fierce and we have Love and LIGHT on our side.  With enough will, and all of you, there is always a way! 

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The NYC~

• It’s always great to be in New York City during the late fall; absolutely beautiful time of year there…the leafs have turned colors and there is a refreshing chill in the air.  I love staying in Dex’s neighborhood; up around 147^th & Broadway, upper Harlem…even the Christmas tree salesmen & department store Santa’s call you “Papi” with a thick Puerto Rican accent!  Thanks for the use of your flat Dex!
• MSKCC & the “Standard of Care”: Well, Memorial Sloan-Kettering might be the #1 GI Oncology Unit in the US, but is certainly wasn’t a good fit for me.  I was joined on this visit by two of the most positive people I know; Sue Igoe, she’s been living in NYC for the past 8 years and she’s still 100% California Girl & my friend Jeff Stein from Jackson Hole. So; I was pretty optimistic heading in!  I had some lovely support and was on my way to meet the best minds in American Oncology.  Unfortunately, Dr. Shah was a total downer!  His views of cancer care and patient treatment were very conservative and he employed an almost dogmatic & religious belief in “the science” and “the standard of care”.  I felt like he was in the business of developing treatment protocols that benefit most of the people, most of the time…but had completely lost his focus on the individual!  Yeah; like, um…ME!  As it turns out; Sloan Kettering, did more to energize my desire to find or create my own path to complete healing than anything else. 

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