Wednesday, August 3, 2011

Roller Coaster Ride

I’m back in town for a few weeks, just in time to catch what appears, finally, to be a real Northwest Summer, complete with sun and warmth and lots of really, really bad drivers on the roads—i.e. plenty of opportunity for me to redirect the continuing flow of frustration and anger and disappointment that comes along with this cancer carnival ride I’m still on.

If you’ve been following along in Dilettante Traveler, you will have noticed that I’ve been very busy living and not spending so much time in clinics these days . . . well, that’s been true—the living part—but during the 19 days that I have been in Seattle since 13 June, 11 of those have included some form of medical treatment/preparation/test/infusion, varying in intensity from racing home to retrieve expensive ($50k/year) medication from the front porch, to walking around for several hours with one eye dilated, to Witch Doctory, to crawling out of bed at 6:00am after four days of no exercise (the last two enforced by a new PET/CT prep protocol) and 12 hours of fasting, to go be injected with radioactive glucose and drink down a liter and a half of barium sulfate, berry flavored.  I asked if they had a simple “no flavor” one, but no.  If I were just getting a CT, “water flavored” is possible, but since the CT part of the PET/CT happens a couple hours after I’ve imbibed the contrast, it has to be barium, which sticks around longer, and it has to be Berry.  I cross my fingers and hope that my friend L never has to have a PET/CT.  She is not a big fan of berry flavoring.  My guts are growling and squeaking at me as I type this.

From the above rant, you can probably guess what I was doing this morning.  Yep, PET/CT.

During the three days in July that I was home between Idaho and the San Juans, I had medical stuff every day, and it was all more proof that I need to have those medical stuff days, that, in fact, they are still necessary to allow me to have the glorious, feral days in Idaho, or the beautiful, reminiscent ones in the San Juans. 

My MRI on 20 July showed a tiny new spot off in a new place in my brain, not big enough to notice from the inside by me, or, indeed, from the scan by the radiologists who read it and declared it stable. Eagle-eyed Dr Jason, however, did notice it, and went back to May’s scan and saw the faint shadow of its beginning there, and decided that now—with three, maybe four teeny spots visible—might be a good time to talk about my next Gamma Knife procedure, to happen sometime this fall, working around my travel schedule (see, it’s good to catch these things early enough to work the cancer around the travel schedule, instead of vice versa).  Nurse Sarah brought in my latest tumor marker scores to get as much evidence as possible about the below-the-neck disease, and my score had jumped from 39 (slightly high) to 52 (slightly higher).  Huh. 

On 21 July I saw Dr Specht (she had chatted with Dr Jason the afternoon before) and she told me of my proposed regimen change, which would begin after the San Juans trip, and after the next PET/CT.  No more Xeloda, the hyper-expensive drug I take at home; instead, back to Navelbine for a bit, which is an infused chemotherapy (low side-effects to the body; higher side-effects to the schedule); and, finally, the dreaded and much put off Lapatinib. Lapatinib is somewhat like Herceptin, from what I understand, working with the body to form antibodies against HER2Neu-receptive cancers, and it’s something I take at home, but it’s also very expensive and, the clincher for me, has pretty extreme gastrointestinal side-effects, occasionally causing a patient to need infused fluids to make up for all the water lost through violent diarrhea.  Doesn’t that sound like a fun affliction to take horseback riding. 

I won’t get any results from the PET/CT until next Thursday’s appointment with Dr Specht, and on that day I’ll probably resume Navelbine with my Herceptin infusion, and probably begin taking Lapatinib as soon as the insurance company can be wheedled into sending it on to me. 

It was better, in July, easier, getting the MRI results and the blood test results after having such an experience of freedom in Jerome Creek; but I still want, desperately want, to be done with all this.  This job, it sucks.  I’d like to change careers, please.  Maybe be a veterinarian, or a park ranger.  Saw down trees legitimately, blaze trails others will use—literally, not figuratively anymore.  Now that would be fun.



Anonymous said...

Yes, I want you to change jobs too. Hang in there lady. Love coming to you from p-town. Lee

Anonymous said...

Yes, I wish you were done with it too so that you can have more time for that luminous living you so beautifully describe in The Dilletante Traveler.

Andrienne said...

Just checking in, and so glad to see you are so literate about a job you hate so much... San Juans, and Idaho sound much better. I am finally off to a great place - tomorrow morning - Edinburgh, Scotland. We (The Conciliation Project) are about to embark upon the Edinburgh Fringe Festival. Our play has been nominated for an award from Amnesty International, so we could not be more excited about doing our play for a world-wide audience. Needless to say, I am pumped.

Laura said...

Not only do I wish you could change careers, I wish the job was as obsolete as the guy who delivers the ice for your ice box. But if you are going to do the job, keep doing it well.