Today was a lot like that day only bad. After our oncology appointment I tried to reach all the people at the top of our little phone tree and couldn't reach a one. Leaving a message seemed just wrong. I believe people should be emotionally mugged live, not by a recording. After a lot of effort, I started reaching people--just as I did a few decades ago--but the tone was a hell of a lot more somber.
And what I had to share with everyone is this. Karen has Stage 4 metastatic lung cancer. The cancer in her lung is grotesque, the exaggerated shape and size that a six year old would draw in crayon, scribbling over and over until the crayon started flaking off the paper. The cancer has spread to multiple lymph nodes in her neck, her chest, and her abdomen. The cancer is in her adrenal gland. And the spots in her lungs we had half-suspected and entirely hoped were cysts are cancerous as well.
The treatment plan is undetermined at this moment because the busy schedule of the rock star biopsy guy we used for Karen's second biopsy meant that we couldn't have that procedure done until just last Friday, the 7th. As a result we are waiting on the results of one final test done on that tissue. We should get those results tomorrow or the following day at the latest.
We do have an idea what's ahead, however. This test will determine if Karen is EGFR positive, meaning that the cancer is a result of a genetic mutation. This would be good news, well, as good as news gets with Stage 4 cancer I guess. There is a 10% to 25% Karen will test positive and, as Dr. Sirott put it, she "really deserves a break at this point."
If Karen is EGRF+ then she is a candidate for a targeted therapy, a drug called Tarceva. It's a pill and although it's essentially chemo in a handy take-home form, it's not as rough a ride as IV chemo. If she responds to the Tarceva then her one year survival rate is 70% and her odds of a "long response" are good.
If she is EGRF- then she will undergo traditional intravenous chemo. The one year survival rate is 50% in this case, the 2 year drops to a dispiriting 20% to 25%, and you really don't want to know the 5 year rate.
So here's hoping Karen is some kind of mutant. I had gotten her a She-Hulk t-shirt assuming she'd undergo radiation but I'm guessing something from X-Men is going to be a more hopeful and accurate alternative.
Miranda went to the appointment with us and handled things about as well as could be expected. She held it together until after the initial meeting and began weeping only as we were waiting to set up our next appointment (that's next Wednesday the 19th). Dash is managing well. We all are, in fact, about as well as I'd expect you can. We are finding things to laugh about. Karen is pleased that she might finally have the leverage she needs to get me to go another godforsaken cruise in the near future.
By the way, the Festival of Pies was awesome, full of great surprises for Karen, and as soon as I get pix I'll be posting something sunnier about that. That said, odds are the next entry here will be about our soon to be determined treatment path.
We are immensely grateful for all the love and support from our heroic family and friends.
Feel free to leave suggestions as to which X-Man t-shirt I should get my lovely bride in the comments section or wherever.
STATUS UPDATE
- Karen has Stage 4 metastatic lung cancer. There is no Stage 5.
- Cancer has spread to multiple lymph nodes, her adrenal gland, and her liver.
- The fact that it's in her liver is especially frustrating because we had hope it hadn't gone there.
- We are waiting on final test results that will determine treatment.
- If we're lucky, Karen will be EGRF+ and a good bet to respond to the targeted therapy Tarceva.
- Luck in this case is a 10% to 25% chance that she will test EGRF+
- Tarceva is a pill with less side effects than IV chemotherapy.
- The one year survival rate with Tarceva is 70%. The odds of a "long response" are encouraging (our oncologist has other patients that are doing well after several years of the drug).
- If Karen is EGRF negative, she will undergo more traditional chemotherapy.
- The one year survival rate for this treatment is 50%, it's 20% to 25% for two years, and ridiculously low for five years.
- This whole thing sucks.
Been thinking of you all a lot tonight. Thank goodness for your ability to find humor right now. Keeping my fingers crossed for genetic mutation.
ReplyDeleteI think these are my faves:
http://www.thenerdybird.com/2011/06/marvel-girls-go-80s-retro.html
Lots of love,
Abby
I want that Phoenix shirt something bad. Now to figure out how to buy it.
ReplyDeleteIf there was ever a family that was tight and loving and crazy enough to pull through this, it's the California Coffey's. I fell in love with you guys last weekend. I don't know, maybe it was the hourly feeding of pie. I know you guys are strong enough to face this with the humor and love and irreverence you showed me last week. I love you guys! Go She-Hulk!
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