Yesterday I remembered a conversation we had with one of my docs when I was first diagnosed. He said that we should look at kidney cancer as something we would never "cure", but that we could "manage", like diabetes.I think that's where my thought processes are taking me currently. I am still trying to wrap my head around the strong possibility that this latest tumor is inoperable. But I can treat it and make it manageable. I am lucky that kidney cancer has no overt symptoms. So I could live with this in me for quite some time, as long as we can keep it from growing and spreading. That's where my thoughts are taking me today.
Wednesday, May 9, 2012
Tuesday, May 8, 2012
May 8 - Getting along
Today will be a day for knitting. I spent way too much time yesterday lost in the World of Warcraft and need to get back to my real life (tho' it is a great escape!). I have the afghan to finish for a PEO sister and have a PEO meeting tonight to prepare for. Just living my life.
Have given the news of the recurrence to just about everybody. Once again, I am overwhelmed at the outpouring of love, good thoughts, and prayers that are coming my way. I am so blessed to have such a supportive circle of friends and family. I will ask now that some of that support be directed to George. He is having a rough time of it. Of course, he doesn't want to talk with anyone, but I do worry that he keeps it all inside. If you are in Albuquerque, call and ask him to meet for coffee. If elsewhere, send him an e-mail just to chat. I know he will appreciate it.
I'll post pictures of the babies and the afghan soon!
Have given the news of the recurrence to just about everybody. Once again, I am overwhelmed at the outpouring of love, good thoughts, and prayers that are coming my way. I am so blessed to have such a supportive circle of friends and family. I will ask now that some of that support be directed to George. He is having a rough time of it. Of course, he doesn't want to talk with anyone, but I do worry that he keeps it all inside. If you are in Albuquerque, call and ask him to meet for coffee. If elsewhere, send him an e-mail just to chat. I know he will appreciate it.
I'll post pictures of the babies and the afghan soon!
Monday, May 7, 2012
May 7 - Back on the Rollercoaster
Saw Dr. Lee this morning. I had posted to FB that I was feeling a little spooky about this visit. Sure enough, the cancer is back. He showed us CT images going back 4 years. You can barely see something developing across time, if you are very carefully looking. Then, this year's scan showed a 1" tumor in the nephrectomy bed. There's a smaller tumor along side it.
So, what does this mean? First it means Dr. Heywood was right when he said he was fairly certain this cancer would recur. He took some tissue samples at the last surgery and the histology said there were still a few little cancer cells floating around.
The docs at MD Anderson also said "when" this cancer recurs, not "if". Looks like they were right.
There are several options. My preference, as most of you know, is surgery. As my friend Rose-Ann says ... When in doubt, cut it out. ... But this one is positioned very poorly. VERY close to a major vessel and right up against the posterior abdominal wall. The concern is that surgery would damage the blood vessel, which would be very bad and/or the proximity to the abdominal wall makes it almost impossible to get clear margins without damaging the wall.
So surgery is not a first option. Next best is tomotherapy. Much like a CT scan, this process focuses the radiation very tightly on the tumor. Now, I know you have heard me say that kidney cancer is specifically resistant to chemo and radiation. The best they can hope to do with tomotherapy is create scar tissue around the tumor, which will limit its growth and slow blood flow to it (also limiting its growth). Major side effect is extreme fatigue. Would be treated daily for a couple to three weeks. Could buy me a few years.
Next possibility is an oral therapy called an M-TOR inhibitor. Have lots to look up and learn about this one. Lee says it will shrink the tumor without cardiac side-effects of other oral therapies. Not chemo therapy, but close. Major side effect is mouth ulcers, which Lee described as "craters".
There's also about a 2.5% chance of spontaneous remission. Not counting on this one.
The high-dose IL-2 that was an option last time is not being recommended much any more because the quality of the success is not good. That means recurrences are almost guaranteed. And I believe it isn't very effective unless the tumor is in the lungs. I'll have to look that one up.
So ...
I have an appt with a radiation oncologist on Friday to learn more about the tomotherapy. I have sent Dr. Lee the name of the oncologist I saw in Houston several years ago and I will be making a trip to MD Anderson soon for their opinion on treatment options. Perhaps they will have a more aggressive surgeon or have some other radiation or oral therapy available or in clinical trials.
As I did last time I was going through this, I will post here as many details as I can and as soon as I know them. Keeps me from having to talk about this all the time and answer countless questions. Lets me get on with my life.
Thank all of you in advance for all the wonderful thoughts and prayers that I know will be coming my way. I could certainly feel them last time and I know they will be a great comfort to me this time.
Oh, and I'm still going on my Alaska cruise the end of this month! Can't keep a good cruiser down!
So, what does this mean? First it means Dr. Heywood was right when he said he was fairly certain this cancer would recur. He took some tissue samples at the last surgery and the histology said there were still a few little cancer cells floating around.
The docs at MD Anderson also said "when" this cancer recurs, not "if". Looks like they were right.
There are several options. My preference, as most of you know, is surgery. As my friend Rose-Ann says ... When in doubt, cut it out. ... But this one is positioned very poorly. VERY close to a major vessel and right up against the posterior abdominal wall. The concern is that surgery would damage the blood vessel, which would be very bad and/or the proximity to the abdominal wall makes it almost impossible to get clear margins without damaging the wall.
So surgery is not a first option. Next best is tomotherapy. Much like a CT scan, this process focuses the radiation very tightly on the tumor. Now, I know you have heard me say that kidney cancer is specifically resistant to chemo and radiation. The best they can hope to do with tomotherapy is create scar tissue around the tumor, which will limit its growth and slow blood flow to it (also limiting its growth). Major side effect is extreme fatigue. Would be treated daily for a couple to three weeks. Could buy me a few years.
Next possibility is an oral therapy called an M-TOR inhibitor. Have lots to look up and learn about this one. Lee says it will shrink the tumor without cardiac side-effects of other oral therapies. Not chemo therapy, but close. Major side effect is mouth ulcers, which Lee described as "craters".
There's also about a 2.5% chance of spontaneous remission. Not counting on this one.
The high-dose IL-2 that was an option last time is not being recommended much any more because the quality of the success is not good. That means recurrences are almost guaranteed. And I believe it isn't very effective unless the tumor is in the lungs. I'll have to look that one up.
So ...
I have an appt with a radiation oncologist on Friday to learn more about the tomotherapy. I have sent Dr. Lee the name of the oncologist I saw in Houston several years ago and I will be making a trip to MD Anderson soon for their opinion on treatment options. Perhaps they will have a more aggressive surgeon or have some other radiation or oral therapy available or in clinical trials.
As I did last time I was going through this, I will post here as many details as I can and as soon as I know them. Keeps me from having to talk about this all the time and answer countless questions. Lets me get on with my life.
Thank all of you in advance for all the wonderful thoughts and prayers that I know will be coming my way. I could certainly feel them last time and I know they will be a great comfort to me this time.
Oh, and I'm still going on my Alaska cruise the end of this month! Can't keep a good cruiser down!
Wednesday, April 18, 2012
Apr 18 - It's ALIVE!
Yes! I am back well and happy. My office still looks like the aftermath of a hurricane, but I now have the energy to deal with it. Still have a few PEO items on my TODO stack, but all-in-all life is good!
The scale said 218.0 this morning. That puts me 18.8 lbs down since the first of the year when I started this journey. And it hasn't been hard. Every now and then I get hungry for a hamburger, and I could satisfy that if I wanted. But more often than not, it passes and I go on my merry way. There is so much that is healthy to eat out there if one just knows what to look for. Salads, veggies, and chicken are your friend!! The most obvious change has been cutting out pizza for dinner and hamburgers and fries for lunch. But I'm never hungry or feel deprived.
I think I am more and more like my Mother every day. I remember, after her first stroke, she decided it was finally time to lose weight. And it just poured off her. She did basically the same thing as I am ... only her downfall was Blue Bell ice cream ... like 3 half-gallons a week!! We each have our Achilles heel, I suppose. Thank goodness I don't miss sweets ... somehow I think that would be harder to take.
Just finished up the planning with the Hamletts for a Disney trip in December. There will be more details on that, and my upcoming cruise on my travel blog, so check it out.
The scale said 218.0 this morning. That puts me 18.8 lbs down since the first of the year when I started this journey. And it hasn't been hard. Every now and then I get hungry for a hamburger, and I could satisfy that if I wanted. But more often than not, it passes and I go on my merry way. There is so much that is healthy to eat out there if one just knows what to look for. Salads, veggies, and chicken are your friend!! The most obvious change has been cutting out pizza for dinner and hamburgers and fries for lunch. But I'm never hungry or feel deprived.
I think I am more and more like my Mother every day. I remember, after her first stroke, she decided it was finally time to lose weight. And it just poured off her. She did basically the same thing as I am ... only her downfall was Blue Bell ice cream ... like 3 half-gallons a week!! We each have our Achilles heel, I suppose. Thank goodness I don't miss sweets ... somehow I think that would be harder to take.
Just finished up the planning with the Hamletts for a Disney trip in December. There will be more details on that, and my upcoming cruise on my travel blog, so check it out.
Wednesday, April 11, 2012
April 11 - cancelled everything
Yep. I even cancelled my nail appointment. THAT'S how rotten I feel. Am trying to wean myself off the Nyquil. I don't believe that doping myself up all day can possibly be good for me.
George has banished me to the upstairs. He doesn't deal well with me being sick. He thinks I should just go to bed and stay there until I am well. Two problems with that ... one, I can't lay down flat because that brings on a coughing attack, and two, I'm just not sleepy anymore. So I will stay upstairs and knit. The positive side of this is that I will likely get Yvette's afghan done!
The trip did not interfere with weight loss. In fact, I'm finally down below 220. Just barely at 219.8, but that's what counts for me! A little ray of sunshine in this otherwise dreary, coughing, sick day.
George has banished me to the upstairs. He doesn't deal well with me being sick. He thinks I should just go to bed and stay there until I am well. Two problems with that ... one, I can't lay down flat because that brings on a coughing attack, and two, I'm just not sleepy anymore. So I will stay upstairs and knit. The positive side of this is that I will likely get Yvette's afghan done!
The trip did not interfere with weight loss. In fact, I'm finally down below 220. Just barely at 219.8, but that's what counts for me! A little ray of sunshine in this otherwise dreary, coughing, sick day.
Tuesday, April 10, 2012
April 10 - Back to you
I have been out of town for two weeks. Visiting friends and seeing new grandbaby ... pictures will be posted in abundance in the coming days!
Back home and sick as a DOG! As I said on FB, I am amazed they let me on the plane to fly home, given my coughing and hacking! Tried Claratin, and Zyrtec in an effort to clear up my head without forcing me to a drug-induced sleep. Nothing worked consistently. So, once home, I have dosed up on Nyquil and slept most of the day. But I can breathe better and am coughing less. Let's hope this is the road to recovery and not the lull before the BIG storm!
Found the interesting article (here) in my Shelf Awareness e-mail this morning. Really fun reading about book designs that push the envelope! How about a cookbook you can eat when you are done? Or a Jungle Book book that has a cover sprouting grass? I hope you find it entertaining. And, if you love reading like I do, take a look at Shelf Awareness. I find lots of suggestions for my next Kindle purchase there!
Back home and sick as a DOG! As I said on FB, I am amazed they let me on the plane to fly home, given my coughing and hacking! Tried Claratin, and Zyrtec in an effort to clear up my head without forcing me to a drug-induced sleep. Nothing worked consistently. So, once home, I have dosed up on Nyquil and slept most of the day. But I can breathe better and am coughing less. Let's hope this is the road to recovery and not the lull before the BIG storm!
Found the interesting article (here) in my Shelf Awareness e-mail this morning. Really fun reading about book designs that push the envelope! How about a cookbook you can eat when you are done? Or a Jungle Book book that has a cover sprouting grass? I hope you find it entertaining. And, if you love reading like I do, take a look at Shelf Awareness. I find lots of suggestions for my next Kindle purchase there!
Tuesday, March 6, 2012
Mar 6 - Gaming is Good for You
I feel vindicated! WSJ published an article today about research that shows gaming is good for your brain!! Check it out here ... for all my comments, check out my WoW blog here.
Feel pretty good today. Lunch with a good friend ... so will be catching up on everything we have missed talking about for a couple of months.
Have had a PEO call almost every morning. I finally feel like I have the time to give now that I am retired. I remember the last time I was president and how rushed everything felt. Now I have the time to pay attention to the Chapter. Think it's going to be a great year for us.
Feel pretty good today. Lunch with a good friend ... so will be catching up on everything we have missed talking about for a couple of months.
Have had a PEO call almost every morning. I finally feel like I have the time to give now that I am retired. I remember the last time I was president and how rushed everything felt. Now I have the time to pay attention to the Chapter. Think it's going to be a great year for us.
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