Twists and Turns

04.25.2012

So much has happened since my last update – as usual on this crazy roller-coaster ride! Where to begin…

Round 3 of chemo went well with minimal complications. It was a short one, only one week, as requested by Boston so that I can be free and clear for surgery which is still scheduled for May 10th. During my chemo I tend to feel pretty agoraphobic so I stay close to home reading and watching telly. The weather was starting to turn so we had a few nice days when I went for short walks with Jesse around the neighbourhood or sat in the garden. I experienced more of the tingly fingers and difficulty touching, drinking or eating cold (called peripheral neuropathy) this time around along with the expected GI distress in various extremes (which I will spare you of the details!) I was able to drastically reduce my reliance on anti-nausea medication which I was certain was only making me feel worse. I relied on a few drops of “special oil” to get me through moments of queasy tummy. This helped a lot so I was able to eat more regularly this time and not lose any more weight. A few days after the treatment week I was feeling surprisingly energetic back to normal.

I’ve had a few more diagnostic tests done including a recent brain MRI (a-ok!), and an ultrasound to check my liver (a-ok). I had a procedure done called a broncoscopy. They basically access the “walnut” in my right upper lobe and the lymph nodes by going down my throat/trachea and get needle biopsies for pathology. We had some good and puzzling results: the good news is that from the numerous samples they took, they did not find any tumor cells! Yahoo! This could mean a few things: 1) chemo & all the work I am doing killed off the tumor cells 2) it is possible there are a few there but they didn’t get them in the samples or 3) the walnut isn’t cancer. Because they did find mucin cells (the jelly-like fluid that my kind of cancer produces) it’s not likely #3 but hey, a girl can hope right? Either way, the fact that there are likely very few is good news. The strange and puzzling finding in the tissue samples was a type of fungus they suspect (but have not confirmed yet) called Cryptococcus gattii  At first I was very excited to hear this because I thought “hallelujah I don’t have cancer after all!” but the more likely scenario is that I have both. In immunocompromised people a fungus can grow opportunistically (i.e. like mushrooms on a dead tree, it probably liked all the necrotic tissue created from the cancer cells dying off). I am not riddled with this fungus (blood tests came back negative) nor is it contagious in any way. It is known to be somewhat common here in the pacific Northwest and in most people, it’s pretty harmless. There is concern when you are seriously immunocompromised such as people with AIDS. My immune system (white blood count etc.) stayed pretty strong throughout my chemo. They still don’t even know if the cells are in fact Crypto. I don’t really understand this, but as it stands now there are a bunch of propeller-head scientists at The Center for Disease Control excitedly examining my samples to make the official call. What does it mean if I do have it? Well, it could affect my surgery date as they may want me to go on a course of anti-fungal treatment before undergoing surgery. They understandably do not want any added risk whatsoever that my lungs could face in such a potentially major surgery. So we are all waiting with bated breath… with only two weeks until surgery and potential for a mountain of flights, schedules, and related plans waiting to be derailed for the second time. Gawd!!!!

Notwithstanding this news, we still don’t know for certain what the fluid in the pleural space is. It cannot be accessed via broncoscopy so the only way to know for sure is surgery. I have not had any more CT scans to monitor it’s progress because there is such a high degree of radiation every time, which in itself is a risk. I am due for another tumor marker test but on last check it is still elevated well beyond what is considered “normal” with no other reasonable reason for it to be so other than the presence of tumor (but still, you never know…) One bit of clarification I should mention is that my planned surgery is done with a technique called VATS Video Assisted Thoracic Surgery: they make three, one-inch incisions between my ribs under my right arm and towards my back. Dr. Sugarbaker felt pretty confident that the surgery could be performed successfully with this technique vs. open chest surgery where they crack open the ribs at the sternum. I mention this because it is much less invasive than one may think of for lung surgery and with a quicker recovery. Because I will not be cleared for air travel before 8-10 weeks post-op, I am actually looking forward to a warm and sunny stay on the east coast. I have plans to spend quality time with my family in Boston and in upstate New York as well as visits to Cape Cod with Jesse, Nantucket with my Vancouver girls, The Hampton’s with the Costa Rica Goddesses and a trip up to visit my old gang in Montreal.

Thanks to one of my special guardian angels, I am enjoying a new health program care of the amazing folks at Organic Lives. Every morning my daily delivery of the most delicious, wholesome and healthy food, smoothies and juices arrives at my door. The philosophy is basically plant-based with no dairy, soy, gluten, or animal based protein. That may sound like “what’s left?!?” but let me tell you it amazes me every day the incredible food that they create. I have never felt more energy and everyone keeps telling me that my eyes and skin look so bright. Truth be told I have some challenges downing four glasses of “grass cuttings juice” (as Jesse calls it) a day. The juice is made up from a special concoction of cucumber, celery, parsley, cilantro, ginger, lemon, burdock root and who knows what else! I am counting the days until they start sending me some of their orgasmic desserts (yes, made with no eggs, gluten or dairy… they are little miracles!) The concern with this kind of “diet” is that I will lose weight but rest assured I have not lost a pound! For any of you who have not yet heard about the compelling argument for a plant-based diet I highly encourage you to get your hands on the film “Forks over Knives“. To some it may seem inconceivable to never have a burger, cola or cheese pizza again – but when you consider the alternative, it’s really not that tough a decision and I am certainly committed to doing every single thing possible to stick around for another 40+ years with optimal health.

I’ll sign off now as I am off to do some yoga with Lucia and Kim on this rainy Vancouver morning!

With loving gratitude, now and always, for all your ongoing support,

Sam xo