05.07.2012
Jesse (superstar boyfriend) and I are at the airport waiting to board our flight to Boston. I’m feeling a mix of anxious and “let’s just get on with this”!
I had a second broncoscopy last week which, on prelim biopsy check, came back with necrotic tissue (dead cells), no tumor cells, no crypto. They will be doing more specific tests this time including growing a culture to try to rule out crypto once and for all. I know this crypto mystery puzzled a lot of you – me too! And apparently all the docs as well. Apparently it’s not one of those black and white things. Because they think a cell may resemble crypto it throws us into this guessing game. And into $500/month of anti-fungal pills that thy want me to take for 6-13 months!!! All because of a very slight possibility of maybe having seen a cell. Yeah, I know, it’s crazy! I’ve pretty much decided that if the culture is negative and the post-op pathology is negative I will seriously give thought to continuing past a month or two!
I also had a PET scan last week which showed no further progression of the walnut or the lymph nodes but more mucin in the pleural space. I have had a bit of pinchy pain near my diaphragm which may explain this. So our decision to move ahead with surgery feels like the right move for sure.
Alison (superstar BFF) will be joining us in Boston on Tuesday evening. We have a few appointments and pre-op tests in the days to come and then I am admitted on Wednesday evening. My surgery is scheduled for Thursday at 7:30am (EST).
I’ll aim to post one more time before Thursday. Alison and Jesse will take over the ropes and keep you all updated from outside the OR.
If you can , please plan to hold space, pray, meditate, walk or whatever works for you on Thursday morning for me! Ask that my team of surgeons make the right decisions for my best outcome and higher purpose.
I love you all more that I can express.
With gratitude,
Sam xo
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
04.06.2012
Hi Everyone,
A little update to keep you up to date on my progress.
My week in Hawaii was truly amazing. Thanks to beautiful sunrise meditations on the beach, yummy donuts, 12 domesticated chickens, and lots and lots of laughs with Alison and the kids I feel that I truly I returned to a connection between my body, mind and spirit.
Ah yes, as predicted we’ve had a few little changes. My surgery date has been moved to May 10th. This allowed for a window to do one more short round of chemo which I started this past Tuesday. Bittersweet…
since I really didn’t count on fitting another one in before heading to Boston but… good news is my most recent blood work showed that my tumour maker went waaaaaaay down again after round two! Yay! As you may recall, we started chemo at 2600. It went down to 1900 after round one. And now it is at 1000! That is a significant drop. We are all thrilled. So I’m shooting for 300 pre-op!
I was able to bounce back fairly quickly after round 2 of chemo so I’m looking forward to getting back in shape over the next month (look out Level 10 here I come!).
Happy Easter to everyone – with lots of love and gratitude always,
Sam xox
03.14.2012
Hi Everyone!
Sorry for the delay with an update! I’m happy to report that round 2 of chemo has gone much smoother than round 1. Outside of some nausea and overall yuck I’ve been managing quite well. Whew! Why the improvement? They reduced my dose for the 14 days of chemo pills so that is a big factor. I also made a concerted effort to reduce the amount of symptom drugs (for nausea mainly) that I was taking. They alone have many side effects including GI distress and terrible malaise. I also made some changes and additions to my holistic helpers. I consulted with my wonderful homeopath in Montreal (Judy Ann McNamara) for remedies. I added to my vitamin and natural supplements including: aloe juice for calming the stomach and GI, Bio-K probiotics to help the GI stay full of good bacteria, melatonin (known to have many anti-cancer properties in addition to a natural sleep aid), L- Glutamine (to help with rebuilding lining of GI), along with a bevy of vitamins from multi, D3, calcium/magnesium, tumeric… I’ve also been doing acupuncture, one reflexology session a week at Footworks (highly recommended!) and enjoying massages with the magic healing hands of my good friend Lisa Lafleur. I’ve continued my wonderful healing sessions with the beautiful Jenett Ashley and have been the recipient of healing energy from far and wide including from “Momma B” Barb Cook who is the mom of one of my hero’s, the unstoppable Roxanne Wiseman. I have also started some very interesting enquiry with the magnificent Dr. Lee Pulos who was referred by my friend Harry.
I did a CT scan last week to see where we were at as compared to the last CT which was 6 weeks ago. The good news is that the lesion in the upper lobe (we call him ‘the walnut’) showed no sign of growth. The lymph nodes also look like they have stabilized and not changed. Yay! The not-so-great news is that growth of the jelly-like tumor (called “mucin”) appears to be progressing. The mucin is in the pleural space (the space between the lung and the wall of the chest). Boo.
So… after weighing the choice between continuing chemo for a few more rounds or proceeding with surgery, I’ve pretty much decided to go with surgery. I say “pretty much” because hell knows I’ve been dealt a few curve balls on this journey leading me to remain open and ready to change plan should a persuasive argument or option present itself! We’ve booked April 25th with Doc Sugarbaker in Boston and I’ll start getting back in shape as soon as I finish this round of chemo (which will be at the end of this week). This includes trying to gain a few of those pounds I lost in the first round. Not so easy with a no- dairy, no-meat, health oriented diet! I did cheat a bit today and had two croissants for a snack. mmmm.
I’ll be heading to Hawaii this Sunday for a week to join Alison and the kids for some much needed warmth and sunshine (and regular intake of freshly made donuts from a place near her house… oh yeah!) I’m really looking forward to it.
Thank you to all of you for continuing to send your love my way. I receive every ounce with gratitude and have no words to express how much it has helped me cope these past few months.
With love always,
Sam
02.29.2012
Ok, that’s something I never thought I’d hear myself saying! But we had some great news on Monday: My blood work showed that my tumor markers came down by almost 20%!!!! That is HUGE! What a great sign that this was the right course of action… and that the rough go of the first cycle was not in vain!
I start cycle two tomorrow (Thursday) morning at 9:30. I get a few hours of IV chemo and then I take pills for 14 days. Then one week off. I’ve circled the wagons with all my wonderful healers (acupuncture, pranic energy, homeopathy, hypnotherapy, vitamins etc.) so I am feeling better equipped to face this next round. My oncologist is also adjusting the dose a bit as he felt that the side effects I experienced were pretty harsh. He’s a nice guy.
I was truly amazed at how quickly my body and spirit bounced back after the first cycle. Once I turned the corner and started feeling better, my return to feeling “normal” was fast. I have decided to return to my home and Alison, Jesse, Lucia, Gabi and all my lovely angel friends are close by and will keep an eye on me here. My appetite posed a challenge last time so I have stocked up on comfort foods that I found I was able to tolerate. I also have a personal chef extraordinare around the corner planning and awaiting food requests – thanks Carlos!
My mantra is “I am healthy – I am healed”. I focus on future adventures and have started a “bucket list” for the next 40 years.
Huge hugs and gratitude to all of you for your continued outpouring of love, energy and healing light.
Sam xo
02.27.2012
Hi everyone,
I won’t lie, the past three weeks have been nothing short of hell. I could never have expected how challenging the first round of chemo would be, and the toll it would take on my mighty little body. I worked hard to get in top physical shape (and as close to mental shape as one can expect to be in my circumstance) in preparation for surgery. I have done chemo before and although it was not easy, it did not prepare me for what was suppose to be “a well tolerated protocol” this time around. I’ll spare you of the details but suffice to say my little body took a serious beating. I lost around 6 pounds that I could not afford to lose and more critically, the pain, nausea and discomfort did a lot of collateral damage to my mental outlook.
That being said, I am sitting here typing this update in disbelief that in only a handful of days I am feeling almost back to feeling “normal”. As recently as Wednesday, walking to the sofa was a challenge. My dear friend Harry held a healing circle for me surrounded by friends near and far – I turned a corner that day on many levels. More on that in a minute. I cannot express enough how much all your emails, cards, art projects and special deliveries have meant to me during this time.
I am scheduled to start round #2 today (Monday) but I have decided to delay by a few days to get my system back into as close to optimal as I can. I will be meeting with my oncologist Monday morning to see how we can adjust the doses to make it more manageable and to review my first set of blood work. Fingers and toes crossed for some good news in the tumour marker results (it’s a bit early to have any measurable results, but hey, any drop in numbers would be good right now).
Over the past two days, with my mind and body returning to me, I’ve been pretty introspective. Harry asked me “what is my purpose” (at least I think that was the question, heard through my slumped over heap of tears). When you are at the proverbial bottom – and let me tell you I was at the bottom of the deep end at that moment – there is a surrender I cannot fully describe. My answer came from this deep place inside me. My voice answered but it was not the me I know answering – it came from deep inside me, it was like my soul had a voice for a moment – it was pretty wild. The answer was so simple it surprised me. Because this is a question I have struggled with for as long as I can remember. A question I have had this deep, deep need to know but have always felt eluded me. I guess I always thought it was going to be some kind of “change the world” purpose of life epiphany so I was kind of scared of it somehow. The answer was simply: “I just want to be me” (I may have also said something about gardening…) I’ve been thinking a lot about that answer since. And the universe, it it’s strange and mysterious ways, has been helping me with confirmations – in the form of your emails. yes, your emails.
My whole adult life, I have felt like I have not lived any great purpose – it has eluded me, always a few steps ahead of me. Unreachable. But I realized that just by being me, my little life and my little world – has touched and changed others. It is so simple it scares me and at the same time makes me laugh. It’s that proverbial ripple effect. The little stone that is plunked in the smooth lake. Except all this time, I truly did not realize it. It was two emails in particular that illuminated this to me, but inspired by so many others from all of you. The first one was written by my friend Dana. You can read it in the ‘send a message to Sam’ section of this blog. This email arrived when I was at the depth of misery. I read it and felt so humbled, so deeply touched by her words. Dana and I met around 8 years ago in a 2-hour customs line-up in Costa Rica airport. I could never have imagined how this chance crossing of two souls could have had a ripple effect so great – for both of us. Until I received Dana’s beautiful note, I had NO IDEA that I had an impact on her life. All this time, I felt that SHE had an impact on MY life. I wondered if she knew that? Guess what Dana, you did.
The second email was from my friend Lara. Lara is getting ready to spend 6 months living in a hut in a rural village in Uganda doing research work on her PHd. She is one amazing girl and I am so proud to know her. Lara’s email went like this:
Where would I be without having met you?
Surely not as happy, not as fulfilled,
not here, not now….
and most importantly, I would certainly not be
me.
I would not be me
without you.
I am without words to express how I feel reading this. I know this to be true, and am so grateful that this powerful woman is now doing HER LIFE’S WORK, thanks in part to one day years and years ago, she and I had lunch and I suggested that she would be great for a project in, you guessed it, Uganda. This ripple had an effect I could never imagined, it also led her to her perfect man who last year became her husband.
Now of course I don’t mean to say that I alone am responsible for this, just that over the course of everyday life, it is so amazing to think of how each and every one of us is so inexorably and beautifully connected. And the magical part is that could be the person next to you in a line-up, a chat with a friend over tea or a smile across a room. We can never fully know the impact we have on others and in turn, ourselves. How beautiful is this? For the first time, I truly understood this. And for the first time, I feel that my life purpose is such a simple yet magnificent, radiant and powerful force – without even thinking about it. Just by being me.
So thank you, Mr. C, for this gift. Damn you for coming into my life again. But thank you for this wisdom that I may not have realized without hitting bottom. It’s only when you hit bottom that you can feel the ground under your feet and decide to push upwards. You can leave now.
Love, light and gratitude,
Sam
02.22.2012
Sam is finding comfort in day time television. At least she has made the healthy choice, watching PBS over soap operas!!! Does anyone else remember seeing this show as a kids? Sam and I had a good giggle!
02.21.2012
“Samantha, what I love most about you is your unconditional acceptance of all of those around you. What I look forward to the most is our joint 50th birthday celebration on Necker Island.”
With all my love and strength,
Alison
02.15.2012
So we are now about halfway through the first cycle. Sam has been feeling pretty good at times mixed in with some nausea. She was actually feeling good enough yesterday that her and BFF Alison planned a short trip to Hawaii. They had booked a departure for tomorrow. Sam had a bit of a rough morning today with nausea and some trouble keeping breakfast down. With that in mind Hawaii will have to wait. She hasn’t lost her lunch much since chemo started so that’s good. What’s not that great is that that we expected nausea to be done by now. We will be adding Stemetil (yet another anti-nausea drug) to help ease the rest of this cycle.
Having said that, I will also be heading back to West Van(Alison’s house) shortly to try and get Sam to drink/ eat something. . .anything. Coconut ice cream may work. If she can keep it down it will keep dehydration away and add some calories.
Jesse
02.14.2012
