The cancer club

Before I start in on everything , let me say I can’t believe I missed the Golden Globes!  I don’t watch much television, but I’m always curious to know which films are carving out the cultural landscape.  Ah, but thanks to the trusty DVR, I might get to watch a rerun.

So, lights are down, tree is gone, all signs of the holidays erased except the cheerful red retro tablecloth and the IKEA curtain of snowflake lights on the fireplace.  More importantly, all sugary snacks have been exiled!  Why is this, you ask, at such a bastion of baking?  As we all know, sugar feeds cancer, and is the worst thing for you!  But this is a long story I should’ve posted in parts and it just keeps getting longer.

January is not cooperating, nor, I surmise, will February.  18 days into the new year and I’m writing off the entire first quarter.  Yes, cancer will do that.  My PET scan lit up.  Two new mets, which is definitely progression.  My young oncologist (he’s got braces, for crying out loud) is indeed a modernist.  He’s going out on a limb and gambling on radiating the two mets to see if Tarceva will continue to work  for a while yet.  He presented the results and his bright idea at tumor board and was shut down 4 – 1.  Somehow he’s still able to get it approved because I went for a consultation with a radiation oncologist and had my 4-dimensional CT simulation the same day.

Metastatic cancer is typically treated with systemic, aka Chemo, therapy.  Conventional wisdom dictates that “you don’t chase systemic disease with local therapy”.  The exception to the rule is palliative radiation for individual areas causing pain or difficulty breathing, or for inoperable brain mets (too many or inaccessible).  Otherwise radiation is used for curative intent in those who aren’t surgical candidates, or to consolidate, such as after surgery and chemo in curable breast cancer.  It’s not used to zap every metastasis that comes around in a Stage IV patient.  It’d be like playing whack-a-mole.

On the other hand, there’s new data supporting the practice, not for curative intent, but for extending survival (which palliation sometimes does, but it’s not really studied).  Apparently metastases have their own biology, different from the primary tumor.  This biology manifests different behavior, and its control may contribute to survival.   The patient also isn’t beating up their entire body to get at a couple of areas of progression.  This goes against the argument that if there’s one of two areas of progression, there must be many others which are too small to appear on a scan, therefore control has been lost and the whole system needs cleansing.

I’m no scientist but I try to keep up with the research.  It’s very time-consuming and often gets in the way of doing what I need to do– iron out my healthcare by the end of February, and find a clinical trial in case this doesn’t work.  And of course, make final arrangements.  Deciding to be cremated and having my ashes scattered so no one has to worry about them has been the easiest task out of the plethora.  Everything else and its mechanics is a pain in the ass.  The crystal ball tells me Goodwill will receive a large influx of clothing soon!

Ostensibly, I’m being radiated because on an individualized level, I’m an outlier.  I’ve responded well to treatment, had an extended response to Tarceva, have  good performance status, am relatively young and in good overall health (no other illnesses of any kind).  So the exception is being granted.  (I sure hope insurance is paying for this because time on those machines is probably like time in a recording studio, if not more.)

I’ll be receiving conventional external beam radiation to my T7, T8, and T9 vertebrae.  The “uptake” (where the cancer was metabolizing the radioactive sugar used for PET scans) was a 2 cm spot on T8.  (I’ve had new pain in my back in the last months of 2010, but then again, I was eating 6 cookies a day or more!)  Risk for unwanted effects, etc. = “very low”.

The second met is in the “left suprahilar area” of the left lung.  It appears to be near the bronchial structures, which is scary.  Those are delicate and necessary areas, which, if damaged or collapsed, would compromise breathing and lead to more complicated procedures such as the insertion of a shunt to keep the airway open.  This met is a 2 cm, irregularly shaped lesion.  For this I’ll be receiving SBRT, or stereotactic body radiation therapy, using a machine called Trilogy.  (The one commonly heard of is brand name Cyberknife. )   I appreciate the innovation and technology that has brought us this far into the future of treatment.  I’m also scared out of my mind that a mistake will be made in programming the linear accelerator, in calibrating the dose, or in any number of minutiae that precision instruments like these depend on to complete the task.  One mistake and I’ll be toast, and no one would know the difference, least of all me.  Risk of vessel damage = low.  Risk for pneumonitis or tissue damage causing deteriorated lung function = 10%.  Now I ask you:  is this not a high risk?  “There’s also the risk that you’ll come in  feeling pretty good, and you leave here in completely messed up.” (The radiation oncologist’s words, which he says would be unethical not to mention.)

It amazes me that of all the folks I’ve known with cancer, no fear or discussion is ever expressed about radiation.  No one describes it in very much detail (except my friend in Holland, who actually posted pictures, and Naomi, who complained about losing all her hair and the persistent fog and memory loss).  Is no one afraid their doses were too high and they would die?  Or that the wrong area was zapped?  What if they fry my thyroid or esophagus or…?

Perhaps at this point most people are resigned to the idea that it’s less harmful than chemotherapy, which does seem aggressive because most of the time they’re thinking of platinum therapy.  My daily pill is chemotherapy, and I’m very thankful for it.  But it’s targeted, as opposed to systemic, so most people fear the cytotoxic, systemic, IV variety.  And yet, radiation is so incredibly scary.  And I’m not a scaredy-cat about too many things.

As for the title of this post…my cousin in Florida started chemo today for HER2/neu-positive breast cancer.  She’s Stage Ib and has to have 33 radiation treatments after 4-6 cycles of Carboplatin/Taxol/Herceptin, and Herceptin single agent.  This, after just completing treatment for thyroid cancer in 2010.

My sister-in-law undegoes surgery next week to resect her 2 cm invasive ductal carcinoma (breast).  I’m hoping her tumor histology is the least problematic type.  There’s still great worry over the pathology of her husband’s biopsy.

We’re all going to be in treatment together.  What fun.

There’s more noise of the stressful variety in the background.  It distracts from end of life issues, which I consider in the dark.  I’ve worked through the Kubler-Ross levels (anger, denial, bargaining, depression, acceptance), although I think the last two pretty much follow you to your deathbed.  The library, as always, has books that tell you how to comfort those trying to deal with your impending doom (unfair but true and necessary), what dietary and natural interventions may aid in delaying the event, and how having a positive outlook does not affect your survival—what affects your quality of life is assuming the frame of mind that’s normal for you, whether it be positive or grumpy.  A better quality of life sometimes affects overall survival.  I’m going to say that, for the most part, if you didn’t hit the genetic jackpot, it’s a crap shoot.  So go ahead and tell people you’ve always been ornery and you might become more so in days to come.  I know I will 😉

In the weeks to come I won’t actually go all the way with Gerson Therapy, but the juicer’s on the counter, and the hubby’s going to have to enjoy his last hurrah with his SAD (standard american diet) this week.  He says he doesn’t mind:  he has 15 lbs. to lose.  Good thing he likes fish, rice, and vegetarian pizza.



7 thoughts on “The cancer club

  1. I’ve always heard that the cyberknife is really good. Anyway it was designed specifically to AVOID collateral damage. I’m sure they explained it to you but in case not, there are I think three beams, none of which is strong enough to damage tissue on its own. But the three are beamed in from three different directions so that they cross on the met; thus only there does the radiation reach damaging levels. Here’s hoping it leaves the little bastard a smoking ruin.

    • Hey Mark, long time no see! How the heck are you? I check your blog and it’s from November. I guess I need to get on FB again…

      Thanks for the input, I appreciate clarification. The exact mechanics wasn’t explained to me, except for the part where my breathing is timed and tumor movement is accounted for due to respiration, and that’s when the dose is delivered from a gantry that hangs over the CT machine. Next I’ll talk how radiation is just like performance art! I wish I could have someone videotape the thing so I could post it. It really is amazing.

      I hope the radiation oncologist was cocky because he does great work. He certainly had some body language that made me think he wasn’t on the up and up with this procedure. He was a private practice guy so every patient counts…

  2. New technologies coming all the time, but how many of them really address the need for genetic rehabilitation. It’s screwy DNA that often causes cancer or aids it when formations occur, so why aren’t more dollars being funneled into permanent fixes to the problem. That is what bugs me. If you could get an injection that would attack just the cancerous cells, helping them to come back to normal, that would be the ideal situation. reprogram cancer to not be cancer. That is my hope for the very near future.

  3. Hey babe, it all sound so very scary! Most people I’ve known with cancer don’t really want to go into the details, So thanks for describing it, it helps to understand how imense it all is!
    Keeping things crossed it works out & you gain what ever benifit you can from all those treatments!
    Your never far from my thoughts seeya hugya *G*

    • Thanks G. The cats have taken to sitting on either side of me to sleep or sometimes just stare. I think they’re on to what’s going on…I’m hoping they’re exercising some sort of psychic healing cat powers…

      Hugs Jazz

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