Made it to Fort Lauderdale yesterday. It was a red eye nonstop flight but unfortunately could not sleep despite the comfy chair and inflatable donut pillow for the bum bums. So I pulled an all nighter for perhaps the first time in 25 years. But made it without further incident and dear friend and bro outlaw, John, was at the Miami airport to pick me up. Walked on the beach barefoot and it seemed to help the neuropathy. on the soles. So will do lots more of that.
Posting will be light this week but I promise to add pictures when I return to Seattle. It's cloudy today but the windows are open and the breeze is warm. Just perfect.
Wednesday, March 21, 2012
Wednesday, March 14, 2012
Update
But first some Captain Beefheart:
The last of the radiation treatments was Thursday March 8th. The radiation crew gave me a bell on a purple ribbon to commemorate our time together. And of course my mask:
My friend Anne suggested decorating with feathers and mardi gras beads, which I thought was a great idea! I had purchased the peacock feathers late last year because they reminded me of some real peacock feathers I had kept for years in an empty bottle of Gallo Sauterne that was featured in the only party I attended in Kirk 5, during college years, where my dear friend, Kim, got tipsy (hi, Kim!). So the bottle was worth saving for the memory.
At any rate, the side effects from the radiation are mainly fatigue and a metallic taste in my mouth. The weight loss seems to have stabilized a bit, but I am down to my college weight. And that, I think, is causing one of my problems. I can't sit for a long time because my butt is numb and it hurts. I attribute this to losing a lot of padding back there and perhaps as a radiation side effect. But my oncologist says it could also indicate metastases into the lumbro/sacral area of my spine. I mentioned this to Dr Halasz when I saw her last week and she examined the area but said that the numbness was not consistent with the dermatomal pattern (the way the nerves in the spine affect various areas of the body--it's sometimes counterintuitive). I meet with Dr. Martins on Friday and we will see what the next steps will be. Fingers crossed I can still go to Fort Lauderdale.
The last of the radiation treatments was Thursday March 8th. The radiation crew gave me a bell on a purple ribbon to commemorate our time together. And of course my mask:
My friend Anne suggested decorating with feathers and mardi gras beads, which I thought was a great idea! I had purchased the peacock feathers late last year because they reminded me of some real peacock feathers I had kept for years in an empty bottle of Gallo Sauterne that was featured in the only party I attended in Kirk 5, during college years, where my dear friend, Kim, got tipsy (hi, Kim!). So the bottle was worth saving for the memory.
At any rate, the side effects from the radiation are mainly fatigue and a metallic taste in my mouth. The weight loss seems to have stabilized a bit, but I am down to my college weight. And that, I think, is causing one of my problems. I can't sit for a long time because my butt is numb and it hurts. I attribute this to losing a lot of padding back there and perhaps as a radiation side effect. But my oncologist says it could also indicate metastases into the lumbro/sacral area of my spine. I mentioned this to Dr Halasz when I saw her last week and she examined the area but said that the numbness was not consistent with the dermatomal pattern (the way the nerves in the spine affect various areas of the body--it's sometimes counterintuitive). I meet with Dr. Martins on Friday and we will see what the next steps will be. Fingers crossed I can still go to Fort Lauderdale.
Wednesday, March 07, 2012
Radiation update
The gamma knife radiation went without a hitch at Harborview on February 28th. Here I am, styling in my headgear, prior to the radiation:
You will note the ITouch in my hand--I am playing Words with Friends like a fiend these days.
Before they did the gamma knife, they did additional brain MRIs. Luckily they gave me good anti-anxiety drugs so it was bearable this time. What they found was there were two or three more metastases in the cerebellum (you have to remember these were good drugs which lasted a while, so my memory of what Dr. Halasz told me after the procedure is somewhat sketchy here) but the metastases they thought was in the right parietal lobe (I had said left parietal earlier, but that was wrong) was not a metastases. Here's on of the MRIs:
Since last Tuesday, I've had radiation to my left shoulder and chest each weekday at the Univ. of WA. Once they get me on to the bed and strapped in, it takes 10 minutes to zap me. But things can get backed up and we've waited as long as an hour and a half. This is where Words with Friends really comes in handy. Of course my dear friends Anne, Diane, Barbara, Jolene, Shelley, Kathy, Melanie, Terry and my two sons usually beat me. But I just blame it on the radiation!
Last Wednesday I also went back to the GI doctor who did another endoscopy under anesthetic to see if he could insert the stent into my esophagus to help with my problems swallowing. But, again, when Dr. Saunders went in, he determined that that if heput one in it would probably not stay in place. As I understand it in layman's terms, the stent has to catch on something but the lining of my esophagus, although pinched from the outside, by the growing tumor, is still smooth interiorly so there would be really nothing for the stent to latch on to. So the doctor again dilated my esophagus, this time to a french 60, and swallowing seems to come easier.
My radiation regimen ends this Thursday. The main side effect is fatigue and that may continue for a bit, but I am looking forward to a return of energy and an enjoyment of spring!
You will note the ITouch in my hand--I am playing Words with Friends like a fiend these days.
Before they did the gamma knife, they did additional brain MRIs. Luckily they gave me good anti-anxiety drugs so it was bearable this time. What they found was there were two or three more metastases in the cerebellum (you have to remember these were good drugs which lasted a while, so my memory of what Dr. Halasz told me after the procedure is somewhat sketchy here) but the metastases they thought was in the right parietal lobe (I had said left parietal earlier, but that was wrong) was not a metastases. Here's on of the MRIs:
Since last Tuesday, I've had radiation to my left shoulder and chest each weekday at the Univ. of WA. Once they get me on to the bed and strapped in, it takes 10 minutes to zap me. But things can get backed up and we've waited as long as an hour and a half. This is where Words with Friends really comes in handy. Of course my dear friends Anne, Diane, Barbara, Jolene, Shelley, Kathy, Melanie, Terry and my two sons usually beat me. But I just blame it on the radiation!
Last Wednesday I also went back to the GI doctor who did another endoscopy under anesthetic to see if he could insert the stent into my esophagus to help with my problems swallowing. But, again, when Dr. Saunders went in, he determined that that if heput one in it would probably not stay in place. As I understand it in layman's terms, the stent has to catch on something but the lining of my esophagus, although pinched from the outside, by the growing tumor, is still smooth interiorly so there would be really nothing for the stent to latch on to. So the doctor again dilated my esophagus, this time to a french 60, and swallowing seems to come easier.
My radiation regimen ends this Thursday. The main side effect is fatigue and that may continue for a bit, but I am looking forward to a return of energy and an enjoyment of spring!
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