Home » Clinical Trial » Sunny with a Tinge of Dark

Sunny with a Tinge of Dark

This morning, after I checked a few posts and messages in an online cancer forum, hubby Gerry and I made a Costco run.  Our conversation en route was pleasant enough, but I found myself feeling increasingly grouchy.  Today was a crispy, brilliantly sunny day in Western Washington. Why was I leaning towards dark?

When I started talking to Gerry about conversations on the cancer forum, I realized why. A friend in my ROS1 lung cancer trial who has been on Xalkori for a year longer than me and whose cancer is slower growing than mine, told me his last scan showed a possible progression.

He was calm and composed about this.  Both he and I had been told the effectiveness of Xalkori against our ROS1 cancers won’t last forever, that we’ll eventually develop resistance to the drug.  We both were given contingency plans for treatment once progression showed up.  This wasn’t an earth-shaking, end-of-life event.

But yet, it was a noteworthy event for me.  Those hypothetical discussions had just become real.

I’ve had clean scans for ten months.  I usually feel good (I’m used to overlooking both the temporary and permanent side effects of treatment). I’m exercising and gradually regaining some of the muscle mass I lost in cancer treatment.  I’m writing again.  I’m going out with friends.  I’m even planning some vacation travel for next year.  Most days, I don’t think of myself as a cancer patient.  I can sometimes even blog about my cancer without the gut-wrenching realization “I have CANCER” sneaking into my awareness.  Life is … NORMAL (for unusual definitions of “normal”).

But normal will not last. Cancer survivor reality raised its ugly head. Someone among the thirty-some members of my ROS1 clinical trial — someone I know personally — probably has progressed.  We ROS1ers are NOT invincible.  Xalkori will NOT last forever.  This time next year, I might be dealing once again with radiation, chemo, or a new trial drug. My grouchiness was similar to that caused by scanxiety: I had to face the reality that my cancer will likely come back.

Once I identified the source of my fears, the momentary darkness passed, and life went on.

We bought a nice bottle of Bailey’s Irish Cream at Costco.

3 thoughts on “Sunny with a Tinge of Dark

  1. The reality of living with this disease. So sorry to hear about your friend’s situation. Well done for not accepting the dark side, for thinking through the feelings, and for getting back on an even keel. Hope you enjoy the Baileys!

    Like

  2. thanks so much for sharing. my brother (aged 50 this oct) has multiple myeloma, since this august only, and your blog helps me to put things into perspective. stay grounded yet positive. i wonder how to help him, father of two girls (4 and 7), self-employed, keep a balance between daily demands/work/ running around – and recuperation/ catching his breath/ finding some sort of peace/quietude. i for myself have started to meditate (due to own medical history, relatively minor) but find no way of access to him at times esp at times when he seems to be depressed perhaps also driven by medication. maybe there’s no answer and simply the option to be with the other. but i’d be grateful for any input from your side – and again – thanks for your open sharing. my heartfelt wishes to you! heike from zurich ( brother in NY )

    Like

  3. Love your writing Janet. So open and honest. Bailey’s Irish cream ! Made me lol.
    Thanks for all your help with my issues. I always feel listened to, cared about and given new useful information.
    Carol

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s