Saturday, April 30, 2011
technical stuff
For those who want to know when I post something, I threw in a couple of ways onto the blog. If you go to the right and scroll down, there is a "subscribe to" section. If you can't figure out how that works, you can also just have the blog sent to your email. Just trying to keep my customer's satisfied...
Medical happenings
Short version for people on the go:
Tuesday: The hearing test went great. Hearing loss it s possibility with cisplantin, so they monitor it well.
Wednesday: Met with the nice oncologist, Dr. McMullen. Two things changed: chemo starting Friday (radiation Monday) and I will only have three chemos but at double doses.
Thursday: The "Mock radiation" appointment took longer than they expected so I was in that nasty aspirating headgear too long plus I almost missed my CT scan appoint. One radiologist tech got mad at me that I didn't want to blow off the CT folks. But the CT folks were nice and rescheduled to later in that day. So all was well. My CT tech, Ethan, was great. Good end to the medical day.
Friday: Chemo begins. Went well. Full report when I have time to write it.
The long version for people with nothing better to do, after the break.
Tuesday: The hearing test went great. Hearing loss it s possibility with cisplantin, so they monitor it well.
Wednesday: Met with the nice oncologist, Dr. McMullen. Two things changed: chemo starting Friday (radiation Monday) and I will only have three chemos but at double doses.
Thursday: The "Mock radiation" appointment took longer than they expected so I was in that nasty aspirating headgear too long plus I almost missed my CT scan appoint. One radiologist tech got mad at me that I didn't want to blow off the CT folks. But the CT folks were nice and rescheduled to later in that day. So all was well. My CT tech, Ethan, was great. Good end to the medical day.
Friday: Chemo begins. Went well. Full report when I have time to write it.
The long version for people with nothing better to do, after the break.
Friday, April 29, 2011
Hell week (but finally chemo!!)
I think it is clear that things are clearly awry because the one thing I was really looking forward to this week was my chemo. At least, I would get to sit still for 5 hours. No responsibilities—peace and quiet. And, as I sit here, I was right. Certainly the imposed rest is a good thing. For those who just want the medical facts, read here. For those who want a summary of my really bad week, read on.
Thursday, April 28, 2011
Changes (treatment starts Friday)
I will just quickly put this out and redo it later with more detail.
They decided it was ok to start the chemo on Friday and the radiation on Monday. So, we are set to go on that. I have the "mock" radiation session today to make sure they are happy with everything. Then I have another CT Scan to get a detail of an area that they wanted more detail on. (That is the one that you feel like you are pissing after they give you the shot.) Oh, lucky me... While I have had many needles in my arms—and I will have more—I don't look like a junkie yet.
I need to go tire out the puppy (which is very hard) so I can leave her happily in her crate. So, we will do the 4-mile walk on West Cliff, including a stop at dog beach. That should do it.
My friend, Nancy, and her lovely daughter, Ellie, are going to stay with me for the days while Leslie is still in LA tending her father and mother. (He is doing fine.) That is a huge relief for me that people will be with the pup.
More later
They decided it was ok to start the chemo on Friday and the radiation on Monday. So, we are set to go on that. I have the "mock" radiation session today to make sure they are happy with everything. Then I have another CT Scan to get a detail of an area that they wanted more detail on. (That is the one that you feel like you are pissing after they give you the shot.) Oh, lucky me... While I have had many needles in my arms—and I will have more—I don't look like a junkie yet.
I need to go tire out the puppy (which is very hard) so I can leave her happily in her crate. So, we will do the 4-mile walk on West Cliff, including a stop at dog beach. That should do it.
My friend, Nancy, and her lovely daughter, Ellie, are going to stay with me for the days while Leslie is still in LA tending her father and mother. (He is doing fine.) That is a huge relief for me that people will be with the pup.
More later
Saturday, April 23, 2011
Timing just doesn't quite work
So, my radiologist said that she thought they would be ready to start my treatment next week. Yay!! Finally!!
But, alas, it isn't going to work. Although they will probably will be ready, they can't say for sure. The problem is that the chemo is supposed to start two days before the radiation (as it increases the effectiveness of the radiation). But, they really need the radiologist to give a date certain. If they promised they could be ready by Thursday, then I could have my chemo on Tuesday. But, no promise was forthcoming. And they won't start radiation on a Friday. And they don't do chemo infusions on a Monday.
Therefore, treatment will probably start the week after next. Chemo will most likely be on Tuesday, May 3rd; Thursday, radiation will begin. Therefore, if all goes well, I should be done on June 23rd.
A little frustrating, but what can I do? The absolute worst thing for me—yes, this really is the worst thing—is that I don't know if I will be up for seeing Wagner's Ring cycle in SF, which I have looked forward to for many years. I always do standing room, but one can actually sit down (though without seeing the stage.) I'm gonna try! But, thank you Lisa for the Siegfried dress rehearsal tickets—that will help! And, the HD Met performance of Walküre on May 14th will help, too. At least we will get to see Ziggy's namesake, Sieglinde, on the big screen. (Yes, we know that it should be spelled more like Siegy—and, Jean, keep spelling it that way—but then people would say Cig-gy and we couldn't stand that.)
But, alas, it isn't going to work. Although they will probably will be ready, they can't say for sure. The problem is that the chemo is supposed to start two days before the radiation (as it increases the effectiveness of the radiation). But, they really need the radiologist to give a date certain. If they promised they could be ready by Thursday, then I could have my chemo on Tuesday. But, no promise was forthcoming. And they won't start radiation on a Friday. And they don't do chemo infusions on a Monday.
Therefore, treatment will probably start the week after next. Chemo will most likely be on Tuesday, May 3rd; Thursday, radiation will begin. Therefore, if all goes well, I should be done on June 23rd.
A little frustrating, but what can I do? The absolute worst thing for me—yes, this really is the worst thing—is that I don't know if I will be up for seeing Wagner's Ring cycle in SF, which I have looked forward to for many years. I always do standing room, but one can actually sit down (though without seeing the stage.) I'm gonna try! But, thank you Lisa for the Siegfried dress rehearsal tickets—that will help! And, the HD Met performance of Walküre on May 14th will help, too. At least we will get to see Ziggy's namesake, Sieglinde, on the big screen. (Yes, we know that it should be spelled more like Siegy—and, Jean, keep spelling it that way—but then people would say Cig-gy and we couldn't stand that.)
Friday, April 22, 2011
Radiation Planning
Two nice folks did my fitting for my "radiation mask" today. Like virtually everything related to medicine, it was a trip. Not a pleasant trip, mind you. But, a trip. So, the crucial thing is they have to get me in a fixed position that they will be able to recreate for the 35 treatments. (My six week treatment has now expanded to seven...).
They first put me on a table with my head in a sort of rest. But, the head rest has to be perfect to get my position just like they want it. To that purpose, they have some material that they activate with water to shape to my head for each treatment. After that head thing hardened, they put my knees over a hump (it helps the back), with my feet against a board. I had to hold some straps to pull the board towards me thereby keeping my shoulders where they wanted them. I happened to wear the "radiation wear" of choice: a tank top. They needed to put a little tattoo on my chest for later when they line me up...All that was quite comfortable.
They first put me on a table with my head in a sort of rest. But, the head rest has to be perfect to get my position just like they want it. To that purpose, they have some material that they activate with water to shape to my head for each treatment. After that head thing hardened, they put my knees over a hump (it helps the back), with my feet against a board. I had to hold some straps to pull the board towards me thereby keeping my shoulders where they wanted them. I happened to wear the "radiation wear" of choice: a tank top. They needed to put a little tattoo on my chest for later when they line me up...All that was quite comfortable.
Wednesday, April 20, 2011
quick update Wednesday, 4/20
I saw both my SC radiologist and oncologist today. Things are now moving much faster. I am very happy that is the case. Let's get this show on the road! My wonderful friend Sharon has given us a house to live in until we can get back to Miramar...(thank you!!!)...so things are looking up after the Stanford fiasco.
Sunday, April 17, 2011
My treatment will be in Santa Cruz (short version)
My medical group declined to cover my chemo at Stanford even though it covered my radiation there. I was going to appeal the decision to Health Net, but I needed clear medical reasons, not just that it was a complete schlep. Stanford's Cancer Center has horrible communication systems which failed me on several levels. And though they readily agreed that it was a bad idea medically, no one would put that in writing. I got very frustrated with Stanford. For people who like tedious detail or hate Stanford, the long version is here.
Saturday, April 16, 2011
Stanford's "tight communication"
“I think one of the best things about doing your treatment at Stanford is our tight communication.” Dr. Colevas, medical oncologist at Stanford.
Warning: This blog post is only for people who enjoy reading tedious details about bureaucratic inefficiency. For a capsule summary, go here.
Thursday, April 14, 2011
A lot of stuff happening...
Maybe I will come back and make this more entertaining but I will just quickly get folks up to date who are curious.
My teeth are good. They were cleared on Monday, so that is off my list. The radiation can go forward. My (new) dentist did find a couple of small cavities but took care of them the same day. I spent 4 hours there but had a fine time. I am not a dentist-phobe at all. My dentist, who sort of reminded me of the golfer Phil Mickelson, is a lefty—like Phil. And, they have wifi in the office—can't live without that!
My medical organization, Physician's Medical Group, did approve my radiation at Stanford but not my chemo. Since it is being done concurrently, this means I will have to go to Stanford in the morning for radiation followed by chemo in the afternoon in Santa Cruz. Argh. Double argh. Triple argh. I am appealing this decision but I have been told that most of these aren't overturned. My PCP, though, is going to bat for me, and I think that is the best hope. I will give a longer report about this in the future.
And, in other news...
My teeth are good. They were cleared on Monday, so that is off my list. The radiation can go forward. My (new) dentist did find a couple of small cavities but took care of them the same day. I spent 4 hours there but had a fine time. I am not a dentist-phobe at all. My dentist, who sort of reminded me of the golfer Phil Mickelson, is a lefty—like Phil. And, they have wifi in the office—can't live without that!
My medical organization, Physician's Medical Group, did approve my radiation at Stanford but not my chemo. Since it is being done concurrently, this means I will have to go to Stanford in the morning for radiation followed by chemo in the afternoon in Santa Cruz. Argh. Double argh. Triple argh. I am appealing this decision but I have been told that most of these aren't overturned. My PCP, though, is going to bat for me, and I think that is the best hope. I will give a longer report about this in the future.
And, in other news...
Sunday, April 10, 2011
Pour mes amies français
J'ai beaucoup d'amis qui comprennent plus le français que l'anglais. Alors, je voulais écrire un blog en français pour vous. Salut!
J'ai été à Hawaï jusqu'au Juin, et j'ai trouvé boule dans la gorge (en fait, l'amygdale sur la gauche). Je suis retourné en Californie parce que mon assurance ne paiera pas pour le problème si j’y suis resté là. (Oui, le système est très, très stupide aux États-Unis). Mais aussi parce que les soins médicaux sont meilleurs en Californie.
Nous avons des locataires dans notre maison jusqu’en Juin donc nous allons rester avec Doug et Laura (la sœur et le frère de Leslie)
Le problème a été diagnostiquée tôt. Le cancer est au stade 2. Je vais prendre un traitement en l’hôpital de jour (lundi-vendredi). L'hôpital est Stanford, qui est l'un des meilleurs dans le pays. Le traitement dure 6-8 semaines et la radiothérapie et la chimiothérapie seront en même temps. Mon pronostic est très bon il n'y a donc rien à craindre. Mais je vais avoir un gros mal de gorge!
L’essentiel: Je me sens très bien, physiquement et dans l’esprit! Je suis heureuse et calme et ne m'inquiète pas. Mais, je voulais que mes amis en France sachent la nouvelle! (Et, j'ai un nouveau chiot et elle me rend très heureuse!)
J'ai été à Hawaï jusqu'au Juin, et j'ai trouvé boule dans la gorge (en fait, l'amygdale sur la gauche). Je suis retourné en Californie parce que mon assurance ne paiera pas pour le problème si j’y suis resté là. (Oui, le système est très, très stupide aux États-Unis). Mais aussi parce que les soins médicaux sont meilleurs en Californie.
Nous avons des locataires dans notre maison jusqu’en Juin donc nous allons rester avec Doug et Laura (la sœur et le frère de Leslie)
Le problème a été diagnostiquée tôt. Le cancer est au stade 2. Je vais prendre un traitement en l’hôpital de jour (lundi-vendredi). L'hôpital est Stanford, qui est l'un des meilleurs dans le pays. Le traitement dure 6-8 semaines et la radiothérapie et la chimiothérapie seront en même temps. Mon pronostic est très bon il n'y a donc rien à craindre. Mais je vais avoir un gros mal de gorge!
L’essentiel: Je me sens très bien, physiquement et dans l’esprit! Je suis heureuse et calme et ne m'inquiète pas. Mais, je voulais que mes amis en France sachent la nouvelle! (Et, j'ai un nouveau chiot et elle me rend très heureuse!)
The Stanford Tumor Board
After my ENT looked at my ugly throat lump, he said, “I want to send you to the Stanford tumor board.” OK—whatever that is. I googled it, of course, and saw this little video.
My ENT told me that there would be different specialists all checking me out – they would all want a good look at the tumor from the outside (‘say aaah’) to the inside (‘we are sending this little camera down your nostril’).
My ENT told me that there would be different specialists all checking me out – they would all want a good look at the tumor from the outside (‘say aaah’) to the inside (‘we are sending this little camera down your nostril’).
Saturday, April 9, 2011
The treatment plan
Upfront, let me just say I am wild about the tumor board!! That was just a great experience from start to finish. If you have cancer, certainly try to get there. They treat you really well. Here's more about the tumor board .
I have stage 2 cancer— it is a large enough tumor that it is past stage 1, but it isn't in my lymph nodes—which is really good news. Most throat cancer is caught at a later stage for a variety of reasons, so I am lucky this way.
The treatment will be non-surgical. Instead, it will be a concurrent radiation/chem program of 6-8 weeks. I will be getting treated daily, Monday-Friday. It will probably start in 2-3 weeks. My first step is to get a dental clearance—that my teeth are all sound, no cavities and a cleaning for the protection of the fluoride. I have an appointment Monday.
I have stage 2 cancer— it is a large enough tumor that it is past stage 1, but it isn't in my lymph nodes—which is really good news. Most throat cancer is caught at a later stage for a variety of reasons, so I am lucky this way.
The treatment will be non-surgical. Instead, it will be a concurrent radiation/chem program of 6-8 weeks. I will be getting treated daily, Monday-Friday. It will probably start in 2-3 weeks. My first step is to get a dental clearance—that my teeth are all sound, no cavities and a cleaning for the protection of the fluoride. I have an appointment Monday.
Friday, April 8, 2011
General introduction (long version)
If you want the short version it is here.
I had stopped blogging because I just had no time to do it. Or, at least, I no longer prioritized the time to do it. I wanted to work on my house in Hilo. Or help my friends in one way or another. Or visit friends. Or go to an opera. Not blog.
But, I'm back! I was in Hilo trying to get my long to-do list done when my left tonsil interrupted the process. An ugly lump developed there. Maybe I will tell an even longer version of this sometime, but suffice it to say, I went to the Urgent Care place in Hilo for them to take a look. Dr. Warsh took a look in my throat and was immediately a little cross with me. "Why didn't you get this checked earlier?" I felt a bit guilty. I mean, I wasn't slacking—I did talk to my PCP in Santa Cruz about it; I followed her directions. Anyway, I realized he was just being like a parent to a kid—being freaked out about something the kid did, knowing that the kid would have no reason to know any better.
I had stopped blogging because I just had no time to do it. Or, at least, I no longer prioritized the time to do it. I wanted to work on my house in Hilo. Or help my friends in one way or another. Or visit friends. Or go to an opera. Not blog.
But, I'm back! I was in Hilo trying to get my long to-do list done when my left tonsil interrupted the process. An ugly lump developed there. Maybe I will tell an even longer version of this sometime, but suffice it to say, I went to the Urgent Care place in Hilo for them to take a look. Dr. Warsh took a look in my throat and was immediately a little cross with me. "Why didn't you get this checked earlier?" I felt a bit guilty. I mean, I wasn't slacking—I did talk to my PCP in Santa Cruz about it; I followed her directions. Anyway, I realized he was just being like a parent to a kid—being freaked out about something the kid did, knowing that the kid would have no reason to know any better.
Thursday, April 7, 2011
General introduction (short version)
If you want the long version it is here.
I had a lump on my throat and went to Urgent Care in Hilo. The doctor said that it looked bad. Cancer-bad. He sent me to get a CT scan. The results were actually good, but he wanted to send me to an ENT (Ear, Nose and Throat) specialist STAT, but the HMO wouldn't pay in Hawaii. I flew home to get it checked out (figuring that it probably was cancer so I shouldn't mess around). I went to the ENT. He said it looked ugly and it was probably cancer. He did a biopsy. He sent me to get various tests (MRI, PET scan). The biopsy came back as squamous cell cancer. The tests show that it is, at worst, in very early stages of lymph node involvement. He is sending me to the Stanford "tumor board" for a treatment plan.
I am a very chipper patient, with a stellar attitude about it all (thus far). So, don't worry about me...We are living with Doug and Laura (my beloved brother and sister-in-law) for the time being since our Santa Cruz house is rented until mid-June.
I had a lump on my throat and went to Urgent Care in Hilo. The doctor said that it looked bad. Cancer-bad. He sent me to get a CT scan. The results were actually good, but he wanted to send me to an ENT (Ear, Nose and Throat) specialist STAT, but the HMO wouldn't pay in Hawaii. I flew home to get it checked out (figuring that it probably was cancer so I shouldn't mess around). I went to the ENT. He said it looked ugly and it was probably cancer. He did a biopsy. He sent me to get various tests (MRI, PET scan). The biopsy came back as squamous cell cancer. The tests show that it is, at worst, in very early stages of lymph node involvement. He is sending me to the Stanford "tumor board" for a treatment plan.
I am a very chipper patient, with a stellar attitude about it all (thus far). So, don't worry about me...We are living with Doug and Laura (my beloved brother and sister-in-law) for the time being since our Santa Cruz house is rented until mid-June.
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