5 Years, still breathing

Barely, but above ground and calling it out!

Beautiful, glorious early-summer day, dotted with birdsong, a lilting breeze, and the promise of more air…in my lungs, that is.  Today is not just the fifth anniversary of the life-changing event called cancer diagnosis, back in 2006, it marks three weeks into the clinical trial I’m on at UC Davis.  So today I set out in the morning sun and:

  • Drew study labs
  • Checked out several M.F.K. Fisher books and David Lebovitz’s Ready for Dessert: My Best Recipes from the library
  • Bought birthday and father’s day cards
  • Thought about eating Cantaloupe or Salted Caramel ice cream at Tucker’s but just couldn’t do it without M.
  • Tried to buy a rubber flap for the shower door
  • Drove along the shore, where loads of people were enjoying summer vacation (which just started)
  • Came home and drank two mango-pineapple-raspberry-coconut-yogurt smoothies with tapioca pearls (oh yes I did!)

and now I’m writing this, which seems increasingly like a complete luxury.  I might watch the movie Another Year, since M isn’t home yet…or I might embark upon a celebration cake.  On the other hand, I’d rather go out for sushi and pick up some macarons at the bakery.  I deserve it!

Hard to believe it’s been 5 years.  I know I couldn’t imagine living this long back in 2006.  I also know I couldn’t imagine death – not really – and I still can’t.  When I start to imagine what my decline might look like, M tells me to stop.  He’s afraid it’ll be a self-fulfilling prophecy.  Anyway why bother?  We don’t know if that decline will come.  I may go in some fashion I haven’t ever thought of, or maybe I’ll just go quickly and save everyone the wringing of hands and sleeping in chairs, and wondering whether to knock me out with extra morphine or what.

For those who know me, in the event M doesn’t know what to do, please call him and reassure him that I do indeed want morphine, no feeding tube unless he thinks I’m going to snap out of it and be myself again, and if the organs are packing up and leaving the building, then he should crawl in bed with me and hold me till I’m gone.  Those are the instructions.

But for now, I want to eat cake – hyperglycemia be damned!  (It’s one of the side effects of the study drug)  I just did labs so I have until Monday 20th to level out the blood sugar for the next lab.

I get my second Zometa infusion (for the bones) this week.  Saw the oncologist yesterday.  He was surprised, and maybe relieved, to see that I was actually okay, after he let me spiral into progression.  I could stick with him, or I could be sneaky and see another doctor while he’s on vacation in Alaska (he said it, not me).  I don’t know, maybe it’s his inexperience?  I like interacting with him, but now I’m sort of wondering if he’s a little afraid of me.  He blurted out, “You’re a cat!”  To which I thought, why yes I am, that’s what my Mom keeps saying about me.  I think I’ve gone through a number of lives already though, and I’m not counting.

So, how am I?  I’m still short of breath, but I can climb the stairs in the library,  walk a few blocks carrying heavy books,  not as apathetic as I was towards everything,  still 13 lbs. lighter than in April (I gained some back, but the lack of sweets has made me lose it again) but am watching my carbs due to the hyperglycemic effects of the study drug, and all-in-all, objectively I think I’m feeling much better (said Monty Python style).  Closer to normal than I’ve been in three weeks, so I’d say not bad for 11 doses of MK-2206.

I’m still a little confused about the mechanism of my resistance to Tarceva (erlotinib).  Being more of a visual person, I’ve had to study animated cell diagrams of the mechanism of action for Tarceva (an EGFR (epithelial growth factor receptor) inhibitor) in order to understand the potential causes of resistance.  In ridiculously simplified terms, there are three ways Tarceva stops working.  Either one develops a second mutation – called a T790 mutation (~50%), which negates Tarceva’s effect on the EGFR,  or one has cMET over-expression/amplification (the cancer creates additional signalling receptors to get around Tarceva’s blockade) (~20%), or Other (all these other pathways that only cellular biologists and researchers can explain).  The study I’m in, MK-2206 and Erlotinib (Tarceva), seeks to block the AKT pathway (it’s these proteins that help cancer cells survive and proliferate), which I now understand is activated downstream of BOTH the T790 mutation and c-MET genes.  In theory, the combination blockade of Tarceva (inhibits EGFR) and MK-2206 (inhibits AKT) should keep the tumor from growing (if not actually causing it to shrink).  My tumor tissue is being tested to determine which mechanism led to progression.  Unfortunately, the tissue is from 2006, so I’m guessing there’s a rebiopsy in my future.  Which is fine.  I want to know, or rather, I NEED to know, to determine what I might do next, in the event MK-2206 doesn’t make it out of the lab.  I need more time though, about 3 years more, so all the drugs in trial now can be approved or be in Phase III at least.

Science lesson aside, I’ll mention some other stuff in case June passes me by without another post.  June is when ASCO (American Society of Clinical Oncologists) holds their annual conference in Chicago.  It’s the world’s largest oncology conference, and many pharma companies’ stocks rise or fall, depending on the optimistic or negative data released in the form of abstracts, in May.  Projections are made based on the marketability of particular drugs, whether there’s competition, what other drugs are in a company’s pipeline, etc.  I used to read the reports in my search for novel therapies.  Now I’m wondering if I shouldn’t play the market against my disease.  Why shouldn’t I make some money off this illness?  It’s volatile and sort of creepy, like Jack Nicholson in The Bucket List.  But then, why shouldn’t I own stock in OSI/Genentech (or Roche, actually)?  I’ve been on Tarceva for almost 4 years (at $4500/month).  Is that a weird thought?

Also this month, M’s company is being bought by a large company in Ohio.  His boss has already nipped the relocation question in the bud.  And insurance obviously remains with Kaiser, as now both the boss’ wife and I have cancer (she had a double mastectomy yesterday, so this is no small negotiating factor).  There will be changes…none of that loosey-goosey stuff anymore – M will be in Ohio quite a bit, I think.  More than he thinks.  No more free gas and insurance for the truck, no more free plane flights to interesting places (there weren’t that many interesting places, but I could’ve gone)…Change is always difficult, but M is looking forward to it, so I hope he’s right.  If it doesn’t work out, he and his boss joke that they’ll open a dive business.

My Mom came up to watch over me for the past three weeks.  I think her blood pressure actually stayed somewhat normal here.  I wish I could take care of my parents.  They’re really getting up there in age, and it’s time for them to have a housekeeper and some sort of part-time driver (for my brother’s appointments and that sort of thing).  This is probably what keeps me going, more than the idea that there’s something new I need to do before I die.  I need to stay alive so I can help them in a meaningful way…

So with that, I say Thanks to all of you who are still on the journey with me.  Your friendship means the world.

Hope is itself a species of happiness, and perhaps the chief happiness this world affords.  – Samuel Johnson

(“The Mikado” opera cake, from Gabi of http://www.thefeastwithin.com)



7 thoughts on “5 Years, still breathing

  1. I am glad you are still on oyur journey…I so get what you mean by telling m what to do..I am sure he will need that from the friends around him. I was thinking of you the other day when i was reading this book about Henrietta Lacks…and all i could think of after that and after what you said about cancer in this post is that we just really need to work on making cancer stupid…because it just seems so sneaky,tricksy and adaptable but then they are our cells and we humans are sort of amazing!

    • My dear Miss Karen – where on earth have you been? So nice to hear from you! When I think of you, I’m tempted to join Facebook. And now you’re here! Hope all is well in beautiful Scotland, and life’s been good to you. I sure miss you!

      • None of these blogging places has peaked my interest. I am sadly longing for the good old Vox days. You should join FB…only interetsing people on my stream and we often have great political,historical,medical(just had one about assisted dying)and even just fun stuff…come…join us…

  2. Hi Jazz,
    Thank you for your note and for asking to use the photo. I am inspired by your attitude and am sending the best pink bubble of healing energy in the world your way. It is obvious that the force is strong in you- keep feeding it. Take care of yourself!

  3. I set this aside to come back to when I had five minutes of free time. You can see by the date that I’m a busy guy. Bad part is, I run around doing stuff all day, every day and your post, as most of your posts, make me realize that what I am actually doing is far from what I’d like to or should be doing, enjoying all life has to offer. Living in the Now. I truly admire your spirit, your will to live, your tenacity. it is my fondest wish that you kick this cancer’s ass and get many more years of healthy living. And meanwhile, I need to figure out how to stop this crazy thing I’ve created and gotten myself into so I too can enjoy the good things life has to offer. (((HUGS)))

  4. Hi Jazz,
    I too am glade your still on our journey, I know I’ve dropped off the blogesfear, but I do come back & read you.

    And often think happy thoughts & send them your way

    seeya hugya *G*

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