Tag Archives: low blood counts

Just As Likely

My blood counts were once again too low for treatment today.  This is a little disconcerting, a little frustrating – but I understand that it’s not the end of the world.  This chemo is serious stuff and my body needs to recuperate a bit.

What was more than a little disconcerting was all the conjecture today about my back pain. When I told the nurses about it they said that maybe I’d cracked a rib, but reassured me that it didn’t mean anything, that this can happen to people who cough a lot.  However, I needed to be seen by a doctor and since my oncologist wasn’t there, I met with a resident.  I explained the whole pain-when-I-cough scenario and he, like the nurses, said it was likely a fractured rib. 

Here’s where it gets troublesome:  I asked if fracturing a rib was fairly normal with a serious cough or whether it means that the cancer has likely spread to my bones.  He didn’t even pause before saying “Yes, it’s likely that it has spread and I would expect your bone density is low.”

Okay, here’s a tip for all you up-and-coming oncologists out there:  your words are powerful – wield them with caution. You are not a mechanic, the patient is not the driver of a malfunctioning vehicle. You’re a doctor and this is my body, my life we’re talking about. If you are going to tell someone with metastasized disease that it may have further spread – in other words that the treatment isn’t working and things are getting worse – consider that this information might have emotional consequences.  Consider that it might freak the patient out a bit.  Don’t just throw it out there like you’re talking about a carburetor or a transmission that blew, because it’s not a car, it’s a human being and there are emotions attached to that carburetor; there are questions of mortality attached to that transmission.

Seriously. I was shocked. I immediately began processing the implications of yet another treatment not being able to stop this cancer. Tears started to pool in my eyes and I had to focus on breathing so that I wouldn’t suffocate from the g-force of fear pressing down on me.  The doctor began looking extremely confused and stressed out about my tears.  At the same time, my mother seemed to rise from her chair and materialize protectively at my side in far less time than it is humanly possible to cross a room.  Also, she had somehow procured a box of Kleenex enroute.

But then the voice of reason kicked in.  It said: Check out the look of horror on his face. Does this guy even know what he just said? So I dug deeper.

I asked what else could be causing the pain, whether it was possible that I haven’t cracked a rib at all, that I just pulled something?  He said it was just as likely.

Just. As. Likely.

A bruised rib or pulled muscle is not an indication of disease progression. I had to resist simultaneous urges to hug him and smack him in the head. I even managed not to shout What’s wrong with you? Why didn’t you say so in the first place?

The pools in my eyes began to evaporate and the weight of the air was suddenly more bearable.  In other words, fear left the room.  It didn’t leave the building – in fact it has maintained a respectful following distance all day – but at least it’s not sitting on my lap anymore.

Dr. Still a Little Inexperienced (Let’s call him Dr. SiLI for short) and I decided that an x-ray today would reveal either a fracture or potentially indicate other possible causes of the pain.  He would call me with the results.  Of course the CT scan on Tuesday will tell us much more, but I pointed out that waiting approximately ten days from now for those results would not be psychologically ideal for me.

Then Dr. SiLI examined me.  (Not a bad idea, since after all he’s a doctor and I’m a patient with a complaint of physical pain.)  He listened and tapped and prodded and poked around looking for the supposedly cracked rib, asking, “Is it here?  Here?” while I replied, “Um, I don’t know… maybe up a little…” and ultimately resorted to coughing in order to locate the pain.  Then, when he pressed it, I didn’t yelp or jolt my body away — in fact it felt kind of good, like a massage.  This I take to be a good sign, because the only time I ever officially fractured a bone you couldn’t even look at it too closely without causing me pain.

So Dr. SiLI gave me a ‘script for the pain & sent me for an x-ray, and then my mom and I left the hospital and did what any normal people would do after such a roller-coaster of a morning: we went to the movies.

And here I am a few hours later, eating vanilla ice-cream right from the tub as I transcribe the drama of the day from the safe distance of a few hours spent with George Clooney. And you know what?  I’m actually thinking how far I have come in this role of Person With Cancer.  It wasn’t so long ago that I would have staggered out of the doctor’s office in a state of shock and trauma, without the experience or presence of mind to stop the panic, dig deeper, and question further.  The doctor’s first comment would have immediately convinced me that the disease has spread to my bones – and who knows, maybe it has. But it’s just as likely that it hasn’t. Just as likely.

Those three words don’t get me any closer to knowing the facts, but they are enough for now.  And I know fear is still camped outside my front door, but I’m not sharing my ice-cream.

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White Blood Cells Also Do It

Just came home from the hospital – my white blood cell counts are too low for treatment this week.  When my nurse Pat came over with the news I immediately saw the sympathetic, “I’m sorry” look on her face – and I’m sure she saw the disappointed, “@#*&%!!” look on mine. I guess my white blood cells have gone into hibernation too.

On the upside, it appears my neck bumps are also hibernating — or, dare I even hope it? – perhaps they’ve left the region completely since neither my oncologist nor I can find them when we go a-poking and a-prodding in the neck parts.  She examined me, said she couldn’t feel them, and then she smiled. I think I’ve mentioned before her (possibly Swiss) frugality with effusiveness? She’s not exactly an open valve of gushing emotion.  But I like her, and I trust her.  So she smiles and I think, that’s the equivalent of “whoo-hoo!” in her world.

But… I’ve been fooled by shrinking lymph nodes and smiling oncologists before.  I’ve let myself get swept up in a wave of hope, only to be sucked down into the undertow of disappointment and fear – and frankly it knocked the wind right out of me.  Not just once but a few times now.  I don’t want to get all beat up again – but at the same time I can’t quite manage to keep the hope out completely.  It’s leaky, this fortification against disappointment that I’m trying to build; the hope seeps in.  Then again, fear finds its way in too, and this persistent, worsening, and supremely annoying cough certainly helps to keep me from busting out a premature victory dance.

What to do? Wait, of course.  I know this game by now: I have a CT scan scheduled for February 23rd.  All will be revealed.  Until then, my job is to get those white blood cells back up and running, get treatment, and try not to vacillate too wildly between hope (shrinking neck bumps!) and fear (worsening cough!)

Steady as she goes.  And back under the duvet, to wait and wait and hibernate.

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A Victory!

Well, turns out  I didn’t get to have chemo today – my blood counts are too low. This worries me, but also explains why I feel soooo tired.  No matter; I will get my treatment next week instead.  

But now for some good news: I recently blogged about a couple named George and Deborah Warkus who were fighting to get Deborah coverage and access to Tykerb & Xeloda – the drugs that I was on at the time.  We’ve become friends through e-mails and phone calls, and I have been following their battle closely.  It just never seemed acceptable that Deborah and I live only a few kilometers apart, have exactly the same type and stage of cancer, and yet I was receiving the very same drugs that she was denied.

Anyway, I’m thrilled to say that they have won their fight for government-covered access to these much-needed and crazy-expensive drugs! Below is an excerpt from Georg’s e-mail to me:

“Saw the doctor today with Deborah and he told us that the game has changed. Ontario health will… are you sitting down for this? Will COVER Tykerb and Xeloda under ODB and EAP with a special code, if the conventional chemotherapies do not work. It is a victory for all women with advanced or metastatic breast cancer whose tumours overexpress Her2. We have to wait for Jan. 5 to be sure if this is true, tomorrow is the date for it to kick in. If it is true I then have to e-mail all the thoughtful people that wanted to help pay for her treatment a thank you, we had a hard fight but we won. Finally the Government is going to cover it, as they should have in the first place.

(I should point out that this is not the e-mail in its entirety.  He also suggested a celebration, and included both the lyrics for, and a You Tube clip of, Lionel Richie’s All Night Long. That song has been in my head for the last couple of days. Party. Karamu. Fiesta. Forever…  Thanks Georg.)   

The determination with which Georg campaigned on behalf of Deborah — and their relentless pursuit of what I think everyone would agree is the only just outcome — has meaning for me beyond the victory of the everyman helping shape our so-called Universal Health Care into what it should be.  These people have inspired me.  Georg is like the Erin Brockovich of breast cancer husbands, and the lessons from their story are pretty straightforward: don’t give up, do whatever it takes, keep your eye on the prize.  Rage, rage against it, whether it’s Ontario’s health care system or the cancer.

Deborah and I — and so many others like us — need to keep the lessons in mind, because our fight continues every single day.  So a big hooray for Georg & Deb for stomping out injustice — now let’s show cancer the underside of our boots, shall we?

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