It's been a bit of a time here the last two weeks. It's harder than I'd like to admit waiting to get scans done. Waiting 5 days for results is also a huge challenge. Not that fretting will change any outcome-I'm well aware of that, but these crazy things do seem to have the capacity to alter the lives of those who need to access their information. So...here's how these latest scans have gone...
The two lesions in the brain seem to be completely stable from August. This is good. I really like stability. And we all especially like stability in Mom's brain. It just seems to be good news for everybody. The lesions in my spine also are still inactive. This I appreciate as the cancer in the spine seemed to be going so quickly through the bones.
The liver, however, decided to become a bit finicky and the two lesions that were previously inactive became active again, and they added a third to their ranks. Drat. This obviously is no good, and means that my body is beginning to develop a resistance to the chemo. Dr. Kenyon recommended that I not recieve any after our appointment on Friday, and no chemo over Thanksgiving. The week after Thanksgiving I get to change concoctions (sometimes called a "chemo" cocktail.)
There is a relatively new drug called Avastin which is a monoclonal antibody against vascular endothelial growth factors. Got that? It basically means that it helps to stop the blood vessel growth to the tumors. This is not an actual chemotherapy drug, but has shown promising results in reducing tumor load and seems to be tolerated quite well. I'd still be getting the monthly Zometa for the bone strength and anti-cancer effects, and they'd add probably two chemo drugs-one from the Taxane family, and maybe some Carboplatin for good measure. These are supposed to have a higher chance of making the hair fall out, a bit more neuropathy, etc., but are also supposed to be tolerated ok. Go figure. I did tell Dr. Kenyon that it wasn't very nice to be making me lose my hair in the middle of winter as it's getting colder.
I'll still taking all the herbs. Jonathan is in England and I'll be chatting with him on the 30th of Nov. to alter things as needed, or maybe just add more of the same. I admit I was getting sloppier about taking 1 tsp. of pwd. herbs vs. the 3 that he'd have preferred. Wrong move!! There is another oncologist in Seattle that I'd talked with at the beginning of this, and he said he'd had good results with the Taxane/Carboplatin regime. Dr. K. had given us a choice of 3 combos, and that was also his first pick.
On the good side, my blood work looks great with all my tests in a good range-normal white and red blood counts, etc. etc. The CEA came back higher that I'd wanted, though, which reflects partly the added cancer growth. It also is an indicator of what a drag it is to be dehydrated and drink two Banana flavored pints of Barium after fasting all night and morning, then get a double dose of contrast media injected into the veins and be in a cold room with a thin blanket over you while you lie on your back in a tube and have 45 minutes of jack hammer like pounding in your head for one test, then lie on your back on another skinny table in another cold room in a very expensive donut shaped machine while the dye stings various internal parts of your body as it's working it's way through. MMmmmm. I highly recommend NOT getting any blood work done after that experience if you want it to look normal.
God did provide me with a vision of Guardian Angels surrounding my big donuts and self, and when the brain MRI machine began, one especially compassionate one stood up and was present over me throughout the procedure. Pretty Cool Stuff. Thanks, God!
Well, with tough times, good times come too, and you all know that my kids are a big part of the good times at our house (as well as the laundry and food budget). Today we went up to Portland so Daniel could participate in a huge Special Olympics swim meet. He did awesome, with a big grin on his face all the way down his lane, and took two gold medals, one in each of his two events. Very cute. Uncle Chris and Aunt Cheryl came and got to see him receive his last medal. Dan would probably improve his time a bit if he'd quit looking over his shoulders to see where the other guys were behind him, and also looking for family and fans in the sidelines. We all have our issues, don't we??? He's a tired pup tonight, so we'd better get moving toward bedtime here...
Thanks for continued. prayers for wisdom, healing, trusting, and just being in God's amazing hands.
Love you all,
Jeanne H.
Saturday, November 19, 2005
Tuesday, October 25, 2005
Quite the Year!
I can hardly believe that it's been a full year since the first symptoms of this dragon called cancer appeared. It's a balancing act at this time thinking "I'm going toward remission-now things can seem normal again" vs. "I'm going toward remission, we're not done yet, I'm still on 2 chemos and another strong drug to keep this at bay, and I have to still monitor how much I can do." That's never been a strong point of mine, and this is where Pat has been a huge help. He enjoys saying no, whereas I agonize over it. He has protected me from so many extra activities this last year, and I think "Geeze-this poor guy is going to get sick of babysitting me at some point." A couple of friends are trying to counsel me in this area,(how to decline things) but I think in general that the male gender is the best at it. I can lay the blame on Pat and say "No, Pat doesn't think I should...", and he doesn't care!!! I think he kind of thinks it's fun sometimes to have the reputation of "the Ogre". Maybe I'll grow up someday and stand on my own feet...we can all hope...
We had an appointment with Dr. Kenyon yesterday. Everything looks good from the outside still-no enlarged lymph nodes anywhere, no swollen liver, no external signs of cancer. My last CEA test was a little higher at 4.9, but he's ok with it fluctuating between 3 and 5. The desire is to keep after it(the cancer) for this year until it is gone completely and can't remember my address I guess. Dr. K. says I can go with no chemo for the weeks of Thanksgiving and Christmas-he says he's letting me off for good behavior. Maybe it helped that I took him a huge piece of Pumpkin Ginger Cheesecake that Nicole had just made, and a big Ghiradelli Chocolate Truffle that Valerie had made. I'm not beneath bribery for these people who have my life in their hands. (We had a couple of birthdays that somehow got trounced on this year and had to compensate.) Do you people know how HARD it is to not eat sugar with these girls around??? "...But we have to make the gingersnap cookies for the crust, and there are some leftover..." I've been good though. If I keep up my protein, and eat a LOT of fresh vegetables (red peppers rival any candy) it helps a ton. I'm getting more and more sold out on these dietary guidelines as time goes on, and it makes it easier to stay committed to it.
Well, needless to say, the Lord has been faithful beyond what I could've imagined, with my body's handling of these toxic drugs, Dad's death and the ability to be with him as much as I was, my immediate family holding it together for the last year-there is a lot to be grateful for. We're praying still for total remission, (that lasts and lasts) and that my body can tolerate this next year of treatment. Hopefully we'll be able to plea bargain for some more breaks in the chemo here and there-wisdom is so much needed here-as is God's hand. It's all really in His court. Always has been, always will be. And a few treats thrown in for the hospital crew can't hurt!
Thanks for your thoughts and prayers-please keep the doctors, radiologists, pathologists, nurses, herbalists, naturopaths, etc. etc. in your prayers. They are working hard on all of our behalf, and carry a big load! Hopefully they can all work together one fine day!
Love you, Love one another,
Jeanne H.
We had an appointment with Dr. Kenyon yesterday. Everything looks good from the outside still-no enlarged lymph nodes anywhere, no swollen liver, no external signs of cancer. My last CEA test was a little higher at 4.9, but he's ok with it fluctuating between 3 and 5. The desire is to keep after it(the cancer) for this year until it is gone completely and can't remember my address I guess. Dr. K. says I can go with no chemo for the weeks of Thanksgiving and Christmas-he says he's letting me off for good behavior. Maybe it helped that I took him a huge piece of Pumpkin Ginger Cheesecake that Nicole had just made, and a big Ghiradelli Chocolate Truffle that Valerie had made. I'm not beneath bribery for these people who have my life in their hands. (We had a couple of birthdays that somehow got trounced on this year and had to compensate.) Do you people know how HARD it is to not eat sugar with these girls around??? "...But we have to make the gingersnap cookies for the crust, and there are some leftover..." I've been good though. If I keep up my protein, and eat a LOT of fresh vegetables (red peppers rival any candy) it helps a ton. I'm getting more and more sold out on these dietary guidelines as time goes on, and it makes it easier to stay committed to it.
Well, needless to say, the Lord has been faithful beyond what I could've imagined, with my body's handling of these toxic drugs, Dad's death and the ability to be with him as much as I was, my immediate family holding it together for the last year-there is a lot to be grateful for. We're praying still for total remission, (that lasts and lasts) and that my body can tolerate this next year of treatment. Hopefully we'll be able to plea bargain for some more breaks in the chemo here and there-wisdom is so much needed here-as is God's hand. It's all really in His court. Always has been, always will be. And a few treats thrown in for the hospital crew can't hurt!
Thanks for your thoughts and prayers-please keep the doctors, radiologists, pathologists, nurses, herbalists, naturopaths, etc. etc. in your prayers. They are working hard on all of our behalf, and carry a big load! Hopefully they can all work together one fine day!
Love you, Love one another,
Jeanne H.
Monday, September 19, 2005
Dumb move!
(This is the same message as the 9-19-05 email.)
I need your help (Pat here). I may have inadvertently erased most of our email addresses and previous messages! If you sent a message recently, and we have not responded, please re-send.
The real crime is that I may have lost all of the saved messages that you all sent, offering encouragement and kind words to Jeanne throughout the last year! (Man, I will need to buy lots of flowers!) So, if you have saved some messages you sent previously, please please please re-send them. Jeanne would very much enjoy reading them again. And I would enjoy Jeanne being able to read them again!
I want to avoid putting our email address out here on the blog, and I do not want you to put yours on a post either. So, if you do not receive an email from us, using our hopefully-correct address book, please contact us in some other way (phone, postal mail, in person, or some other analog method.)
When you send us your email, you may get the "Earthlink Spamblocker" message. We will respond.
PS Jeanne got good news again today. Her CEA level dropped again! I do not know the actual number, and she has already fallen asleep. The number obviously was good enough to compensate for this major blunder of mine. I do not even need to sleep on the couch!
Thank you again for your prayers, support, and especially, showing kindness that goes beyond dependence on electronic systems, (or husbands that think they know how to operate them.)
Pat
I need your help (Pat here). I may have inadvertently erased most of our email addresses and previous messages! If you sent a message recently, and we have not responded, please re-send.
The real crime is that I may have lost all of the saved messages that you all sent, offering encouragement and kind words to Jeanne throughout the last year! (Man, I will need to buy lots of flowers!) So, if you have saved some messages you sent previously, please please please re-send them. Jeanne would very much enjoy reading them again. And I would enjoy Jeanne being able to read them again!
I want to avoid putting our email address out here on the blog, and I do not want you to put yours on a post either. So, if you do not receive an email from us, using our hopefully-correct address book, please contact us in some other way (phone, postal mail, in person, or some other analog method.)
When you send us your email, you may get the "Earthlink Spamblocker" message. We will respond.
PS Jeanne got good news again today. Her CEA level dropped again! I do not know the actual number, and she has already fallen asleep. The number obviously was good enough to compensate for this major blunder of mine. I do not even need to sleep on the couch!
Thank you again for your prayers, support, and especially, showing kindness that goes beyond dependence on electronic systems, (or husbands that think they know how to operate them.)
Pat
Thursday, September 08, 2005
flex time
Well, I WAS going to get a break from one of the chemos...but Dr. Kenyon spoke with a collegue at Fred Hutchinson Cancer Center, who recommended that I stay on the Navelbine with the Xeloda for another year. When I asked Dr. K. about the outlook for this, he replied that there are some people who can come through this, and the chemo really works for them. Then he mentioned that when I'm 10 years out we can have a toast. He was encouraging, and we knew that altering it as we go was a possiblity, and that we don't want to quit too soon if the best results would be to hold out for a while. We'll check in with him again toward the end of October, and will be assessing the progress and the drugs about every 6 months, with scans I believe more frequently than that. Dr. K.'s outlook was very hopeful.
Hi-ho, hi-ho, it's off for drugs I go...my appointment is in 45 min. for this weeks dose. Mmmmmm can't wait. I did have one week off, and Pat took me to Mary's Peak for a very sweet sunrise that day. Good guy!!!
Love you,
Jeanne
Hi-ho, hi-ho, it's off for drugs I go...my appointment is in 45 min. for this weeks dose. Mmmmmm can't wait. I did have one week off, and Pat took me to Mary's Peak for a very sweet sunrise that day. Good guy!!!
Love you,
Jeanne