No, not whiskey. Or sarsaparilla for that matter. Hey, did you know sarsaparilla was spelled SARS-a-parilla? I’ve always (yes, I use this word all the time – not) pronounced it SASS-parilla. Yeah, you know you do too.
But as usual, I digress.You know what bottles I’m referring to, doncha? Yup. A little over two weeks after my drac-doc sucked out 2 1/2 liters (5 bottles) of fluid from around my lung, I hadn’t had enough punishment and I returned for another 4 bottles. I’ll spare you the pic since I got so much “yuk” grief the last time I included a photo with all of the bottles lined up. He warned me the first time that the fluid could return fairly quickly and he was right. My breathing, chest pressure and bloated feeling had returned big time and they rushed to get me in yesterday for another lung-suck. This time was not quite the slam dunk the first time was as they (he and his 2nd-cutest-person-in-the-room assistant) really had to work it to get things flowing. See, learned my lesson. 🙂
Thus, I am not recovering nearly as well as the last time when I powered down 4 pieces of pizza the night of the procedure. I think my lung is having growing pains trying to re-expand to its mostly regular size. Right now I feel like I have the flu and a couple of broken ribs. Obviously that is not the case but it’s the best description I can muster. I opted to postpone my monthly Zometa infusion yesterday afternoon because it would have just added one more variable into the mix I do not need this week.
OK, enough whining. Now to mostly good stuff. Emphasis on mostly.
Yesterday I finally received formal news that the lab that was testing my tissue sample, did indeed have enough to test, and confirmed the T790M mutation. Thus, I do not need a poke in the back for another lung biopsy. Yea! I’ve already begun the battery of tests that will be necessary prior to my first pill popping day with AZD9291, now affectionately called the “A Team” per reader consensus. Thursday I started with a vision test at Shiley Eye Center which involved dilating my eye. The picture shows me styling the disposable eye shades they give you because the sun is virtually blinding since your eyes can’t adjust when artificially dilated. Not a big fan of having things poked into my eye. Doubt if I could ever do contacts. Although after the very good results for the test, I may never have to worry about contacts.
After the eye test, I stylishly walked next door in my cool shades for the first of what I assume will be a zillion blood tests. Again, they need to get a baseline to monitor any potential changes to my chemical makeup from the medication. That was my first poke of the day. I drove home like Mr. Magoo with my regular sunglasses over these temp shades as the sun was very blinding.
Rested up a couple hours and then headed down to Sharp to get, yes, another blood test. This is my regular monthly poke. And of course UCSD (because of the trial) and Sharp cannot share results so it involves getting nailed twice. Of course.
After that I headed over to the Sharp MRI/CT office to get a full body kitty-scan for another trial baseline. This involved my 3rd poke(y) of the day since they needed to do a contrast test. If you remember from a prior post, this meant I was injected with some hot-flash inducing juice. I waited around to get a CD of the test although the written summary would not be available for 24 hours. I would flunk anatomy but the attached picture (prior to my lung-suck) seems to confirm the huge pool of fluid around my right lung. This is what triggered the emergency need for the thoracentisis.
Now some not-so-good news. The CT scans show “innumerable new bilateral pulmonary metastasis” meaning fuzzy has had lots of babies since my last test. Doubt if being off Tarceva for only a few days had much bearing on that. And what’s funny, if there is anything funny about this, is that this increase in cancer is called “progression.” Really? I thought words that began with “pro” should be good things. It should be called “congression.”
But I am on track to begin the trial this coming week pending any totally unforeseen hiccups. Thursday would be my first day popping the A Team. And the test results have been pretty good for those on this drug at other trials. And it works pretty quickly for those that it works for. Hope I am one of the 60-percenters and that these fuzzies get knocked on their ass in short order.
I would be remiss if I didn’t acknowledge my wifey (the saint) who has been my rock in this whole journey. Yeah, she gave up her planned-a-month-in-advance golf game yesterday to attend my lung-suck. And anyone would say, of course she should. But that is just a microcosm of what she has sacrificed over the past year and 5 months. Remember “Left in the Lurch” post from a while back? Well, I can’t say I’ve been very good at keeping my word. She has been catering to my every whim without complaint. So if you know her personally, please help me get her out of the house for some Kim-time. She overwhelming deserves it.
So here is my schedule for the upcoming week:
Mon: work as usual
Tue: 10-12 hour day at Moores for a full battery of tests
Wed: Quick ECG
Thu: First day of A-Team popping. 10-12 hour day. They need to monitor me all day to be sure nothing drastic happens.
Somewhere in here they need to squeeze in a echocardiogram. That’s the last piece of the puzzle.
Most likely you will not hear from me until the end of the week after I get through the schedule above. Wish me luck.
Business as usual. Day at a time.