Renal Cell Live!

Friday, February 26, 2010

So, What Exactly Went On?

This is hard to get a handle on because we all want to put things in familiar context. As Dr. LA said, "Gamma knife surgery involves no knives and no surgery, but those are the terms people comprehend so that's our reference."

To help people understand the procedure, Cleveland Clinic has developed patient resources, including a Gamma Knife Treatment Guide. This gives a better overview of the procedure I went through than I can, but I can add some personal details about what I encountered. I hope the details will be of interest to you; they're certainly of interest to me!

First off: The head frame is fitted with screws directly against the skull in 4 places, very like installing a glass lampshade on a floor lamp. Small plugs (between 1/16" and 1/8" in size) are cut through the skin for direct contact with bone, but there's no penetration into the bone. The head frame in essence allows the patient to become a part of the table during the procedure. The only bleeding I experienced was at the pin site on the right side of my forehead. Given how head wounds can bleed, no surprise that something flowed at the end of the day!

What's so important about being "part of the table"? The precision involved with this procedure is mind-numbing. It takes longer to map the procedure than it does to perform it, for most patients. In my case, the mapping took 4 hours and the zapping took 2-1/2 hours. As Dr. LA and Dr. Sam C both stated, "We're dealing with the brain, not a toe." I am still blown away by the idea of radiation from 192 sources focused on tissue to sub-millimetric accuracy, but if it can be done why demur? So being "part of the table" allows that precision throughout the procedure, and the computer controls allow the team to start, stop and adjust as needed.

I realized part-way through the procedure that "women of a certain age" have a distinct advantage over men during gamma knife: we've all slept on a headful of curlers at some point in our lives, and from that experience we learned how to balance the skull on an uncomfortable surface while relaxing the neck. I haven't slept on curlers since high school over 40 years ago and I still remembered that trick! (Eat your hearts out, guys!)

Stopping and starting the table at will is an advantage for the patient as well. The cylinder is generously sized, the table is comfortable, and the imaging is quiet - no banging magnets, no buzzing, no disruption. I hadn't expected to feel quite so pampered, actually. A nurse was on call for me at all times. About half-way through the procedure my nose started to itch, so I asked that we stop so I could scratch it. That turned into a trip to the waiting room to visit with Saint H and sister/friend M while I retrieved some saline spray and got more comfortable, a little "walkabout" and stretch, and a trip to the bathroom. When I felt ready, I went back in, got repositioned, and continued.

I've given myself plenty of time this week to recuperate. Of all that happened, the most troublesome is the bruising at the pin sites but that's nearly cleared up, and I've had to take some non-aspirin pain reliever from time to time for slight headaches, but that is it.

Who wouldn't like surgery without cuts, bleeding, pain, or recuperation? I ask you!


Wednesday, February 24, 2010

Surgery in Street Clothes

Yesterday I sent out messages to my "sporadic updates" lists to let everyone know how the procedure had come out, and late afternoon I spoke with my dear sister J. I told her that, on the whole, everyone had complied with my request not to call; I had decided to take several days apart to make certain that I had no headaches, that I didn't overtax myself, that I could adjust to new medication schedules, and get my head wrapped around the whole process, before I settled into visits and talks. She commented, "This all seems to science-fiction! When we were kids, could you have imagined anything like this happening?" And I had to acknowledge, no, I couldn't.

The film Fantastic Voyage comes to mind somehow, with little miniaturized scientists jetting through my head, zapping tissue amidst all types of improbable barriers and dangers. That just doesn't square somehow with being comfortably placed on a table in street clothes, and having someone pop one of my favorite CDs by the Gipsy Kings into the stereo system.

We have friends here who have 25 years of experience dealing with her brain tumors and subsequent medications, surgeries, radiations, and life changes. She's maintained a loving relationship with her friends and her family; she's upbeat, and accepts the limitations that have come with her condition gracefully and inspirationally. Science fiction can't begin to describe how things have changed over the years with treatment options. Even more, science fiction doesn't approach the amazing abilities of the human body and mind to cope.

I'm back to knitting, working my way through small projects. It's a fabulous relief to be able to comprehend my "alternate universe" of stick and string without panic.

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Thursday, February 18, 2010

Wheel of Fortune

Last week's scheduled evaluation led to a pass to the next round of the clinical trial, so I made the next block of hotel reservations, and prepared to return to Cleveland this Monday past for the first treatment of Round 8. My friend and sister M volunteered to drive so we could catch up after a couple of weeks without time together. Last Friday I settled down on the couch with Marmaduke and my knitting to watch the Opening Ceremony of the Olympics, and realized to my horror that I couldn't comprehend a simple pattern and translate it into knitting stitches.

Then I tried to make some written notes on a photocopy so I could reduce my planned project packet to a more manageable size and leave a book behind. I couldn't write in a straight line and I couldn't control my handwriting. By this time I was thoroughly spooked, and sent an email to Dr. G to notify him of my concerns. As I was heading up anyway, we scheduled an additional appointment for an MRI of the brain, something that we hadn't done for some time.

Late Monday afternoon we completed the scan and returned to Dr. G's office for the results.

I am now off the clinical trial, as we discovered several lesions on the brain with attendant swelling that was causing my cognitive problems. I was immediately admitted to the Cleveland Clinic Hospital to start steroid therapy to reduce the edema in the brain, and for consultations with neurology and radiation oncology specialists on Tuesday. M's husband the valiant Mr. C battled a raging snowstorm to bring Saint H and sister C2 to Cleveland. We traded family members, and Saint H and C2 settled in at the hotel for the consultation results.

Tuesday I spoke with neurosurgeon Dr. LA and radiation oncologist Dr. Sam C, and we charted our next move: I'm scheduled tomorrow, Thursday, for a gamma knife procedure, an all-day funfest starting at 7:30 a.m. and ending who knows when?

I'm comforted to know that Cleveland Clinic has been doing this since 1997, and Dr. LA has done some 300 procedures and works closely with RCC patients. I'm surprised and somewhat startled that this is done on an outpatient basis - I stayed in the hospital on Dr. G's orders to avoid having to go home and return in a snowstorm and to get started on therapy as quickly as possible. I was discharged, moved into the hotel, and have enjoyed the time intervening with my dearest boy and my dearest friends.

I miss my cats, I miss my house, I miss sleeping in my own bed. I expect I won't get home until Friday due to the observation period required after the procedure.

I don't know what comes next. I consider myself lucky - we were able to take quick action and I'm in excellent hands. I know several folks who have gone through the procedure and done just fine, and I'm expecting to do just fine myself. I'm not looking forward to the expected headaches and the imposed immobility for however long the procedure takes.

I know the chances of survival with good results from this procedure are impressive; as I told Dr. LA, "I like your odds for me better than mine."

So I hope soon to be able to tell you what this turn of the wheel involves. Spare a good thought for me.

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Monday, February 08, 2010

Digging Out, Redux

Our snow removal buddy JR spent an hour and a half yesterday digging out our lane. I suppose we are lucky; we only got 18" of snow and we didn't have to go anywhere urgently, so it was no big deal that we were snowed in for 3 nights and 2 days. Snow drifted to about 4 feet along the lane and, as the wind had shifted several times, it was thoroughly plugged. JR was here 4 times over the weekend just "keeping ahead" until the wind stopped.

Hoarfrost in our west fencerow, 3/8/10This morning we were treated to a thick coating of hoarfrost, caused when water vapor sublimates on very cold surfaces; e.g., as last night, when heavy fog in the air met the surface of everything exposed to the subzero temperatures we had. It's beautiful and seldom lasts long; we've seen it quite a bit this year. If I could see the northern lights as well this winter I'd be happy!

Not to say that I'm not happy, of course - I am. Things continue well, in my opinion, and we'll head to Cleveland tomorrow for tests on Wednesday to see how things are going. I'm always edgy while waiting for the test results to come back, but have no symptoms to suggest that anything has changed drastically.

Oh - we're due for more snow tomorrow, possibly as much as 6". JR has already agreed to come back on Wednesday before we get home to dig out again, if necessary. We're very glad to know him!


Thursday, February 04, 2010

Thank goodness that's over

January, that is; such a dreary, fractious, whining month this year! It was 31 days of mostly unremitting grey skies, mostly disgusting weather, mostly unpleasant news - all together a forgettable period. Within a 10-day period friend and sister C2 had a heart attack (she's recovering nicely), friend A's mother died unexpectedly, and a former coworker was diagnosed with stage 4 lung cancer. The whole miserable month ended on Sunday, appropriately enough, with a major car problem as we were getting ready to head to Cleveland - but at least it didn't happen while we were on the road, and my beloved Outback was quickly repaired and ready to go again. February is bound to be better.

I'll be heading into town shortly to pick up kitty and people meds, kitty and people food, and a few other things in preparation for the winter storm that's heading our way. I'm not panicked and the larder isn't bare, but there's no reason not to have stuff on hand. Saint H is due to lead a winter tree identification hike on Saturday for the local park district, but we'll have to see if the weather cooperates. Hmmm, seems to me we did this last year too and squeaked the hike in before things got ridiculous. Maybe our luck will hold, or maybe we should think about a different scheduling pattern? Who knows.

I'm compiling all our tax paperwork for the accountant. Last year we put over 10,000 miles on the car for medical mileage, and the stack of medical receipts this year is about 8" high. Egads!

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