Hi Everyone!
We just got home from the spring Denver Gem & Mineral Show. I have been on three trips lately and hardly been home. My family has wanted me to rest, so they've kept me away from the computer and phone. So I'm sorry I've been out of touch.
MEDICAL UPDATE
I couldn't have FOLFOX last week because my white blood cell/platelet count was too low; however, I'd been on vacation with my sisters to Texas and wasn't about to take the shots on the road. I was able to have my Avastin infusion last Wednesday.
This week, I have been on the shots to improve my white blood cell/platelet count, so hopefully, on Wednesday, I can do FOLFOX. I go in at 9:45am, they take blood, and we'll see what happens. I need to check in with them about other stuff as well.
I'm down to two steroids per day. While my feet and legs are still swelling and bruising, probably from the chemo Avastin or FOLFOX, my left leg is doing much better. I think I'm getting my muscle back. Every day it improves. I'm still using my cane (thanks Mr. Park for the four-pronger), but I'm able to move my leg more easily and with less pain. I'm starting to bend my knee a tad. I'm really excited about that. This is the issue related to radiation recall which was induced by the chemo Gemzar which I'm not on any more.
I have completely lost my hair. But it's growing back in pretty fast and I think I look good bald!
Thanks everyone for your indulgence while I have been on all these heavy medications. Some days, I don't know how long I can go on like this taking all this medication, but if I can get off the steroids, if the FOLFOX will stall the tumor growth, if I can have radioactive seeds, maybe, just maybe, there's hope for me. Sometimes, I feel like I should just die and get out of the way, not drag everyone through this. But I'm not there yet. I think there's a chance. I think there's more time for me. If there's a duty to die, I'm not ready to do my duty. Besides, the daffodils are blooming in my yard, the grass is turning green. I've just reconnected to so many good friends from the past. No, I'm not dying anytime soon.
In the mean time, I do feel myself coming off the steroid taper and calming down. I'm hoping we'll drop the dosage this week.
I do want to post more about the three trips and some photos, but again, I find myself up too late, and I need to go to bed.
While in Denver this weekend, I got to see my Denver girlfriends: Jody Curphy, Susan Asher, Darlene Ritchie, Diane King, and Marcia Karshmer. Thanks to all of you for coming down to see me at the show or meeting us for dinner. We also spent time with Robert's son Ian. We were pleased with our sales, and Robert and I both did some buying for our businesses, but we were so busy, it was hard to get out of our room. I got to see many old friends from the Denver gem & mineral community, including Sandy & Chauncey Walden who introduced me to Robert twelve years ago, and for which I am eternally grateful.
Again, thank you everyone for prayers, gifts, books, recommendations, and support. Thank you for rooting for me. You can't imagine how it helps!
Just up here in Colorado looking forward to warmer weather and staying put for a while.
Sincerely, Caroline
We saw a fox on the side of the road near Ridgway coming home tonight. Of course, there were elk and deer and lots of baby calves in the valley.
Monday, April 30, 2007
Thursday, April 26, 2007
REAL GOOD NEWS!
REAL GOOD NEWS!
This is Caroline' s oldest sister, Suzie. Caroline and Robert are on their way to Denver for a gem and mineral show and she asked me to post the good news.
Caroline was unable to have FOLFOX chemo yesterday due to low blood count but she was able to have an Avastin infusion. The blood work prior to chemo yesterday showed her CA19-9 tumor marker to be 5,545 --- which is down from the 14,000 range. YEA!!!!
Caroline wants to thank all of you for your love and support. I want to thank you too.
After spending 11 days with her on our Gray Girls' Texas Trek, I can tell you she is one determined woman. It is beyond me how she manages to do all she does. When she undressed the first night of our trip, I was shocked to see her leg. The leg from the knee down, the ankle, foot, and toes were all incredibly swollen and there were a number of big bruises on that leg as well as other parts of her body. I was afraid the skin on her ankle was gong to split open. Ice packs and wrapping her leg definitely helped but she said it's beginning to swell again after yesterday's Avastin infusion.
Caroline will blog again as soon as she can ---- heaven knows she'll have a lot to report!
Please continue the prayers and good thoughts for my amazing sister,
Suzie Gray West
Tuesday, April 24, 2007
Back Home - More Later
Hi Everyone!
I just got home from the most incredible trip to Texas to "touch my roots". We saw lots of old friends, family, found our "dead people" at the Cleburne Cemetary and Laureland in Dallas.
I can't thank my sisters enough for their indulgence, patience, and laughter. All three of us had "meltdowns" where we had to bitch at each other, but hey, at this point, we are close enough to do that.
I see Dr. B tomorrow - first we haveto see where my bloodwork is at. Pray for healthy red & white blood cell counts and PLATELETS! I hope I can have my FOLFOX tomorrrow!
I will post more later about the trip with pictures.
My hair is growing back in pretty fast, so I don't think I'll completely shave my head. Thanks to AC & Jean in Texas and Margaret & the Park family for all the hats. Margaret, her daughter Taylor (my new adopted daughter), and my sisters were in a Cancer Walk in Duncanville last Saturday. (We spent 1962-1969 in Duncanville and had a great experience growing up there. ) I had to ride in a wheelchair, and my dear friend from childhood, Margaret, pushed me most of the way. It was so good to reconnect with some old friends, especially Margaret and her family.
Okay, I gotta go take some pills.
My condolences to the McCrea Family. I cannot tell you how much I will miss Valerie. She was a great inspiration to me. Also, our sympathies to the Ken McKenzie (his wife passed away this week and she as well was a real fighter and inspiration to me), Warren Doyle's family, and Mary's family from Ewe & Me in Ridgway. (Sorry I can't think of Mary's last name.)
Congratulations to new parents and grandparents: Trevor & Erin from our local bakery - a boy, their first, Catcher Easton Latta; the Swim Shop people in Ouray (Jennings, fun people to bowl against),; and Julia Gregory of Austin with her new grandbaby whose name I cannot find at the minute.
Thanks everyone for your prayers, good wishes, etc. You have been a big help!
Just up here in Colorado, glad to be home, but we should be leaving town on Thursday for the spring Gem & Mineral Show in Denver if all goes well, and I can find someone to clean my port in Denver.
Sincerely, Caroline
I just got home from the most incredible trip to Texas to "touch my roots". We saw lots of old friends, family, found our "dead people" at the Cleburne Cemetary and Laureland in Dallas.
I can't thank my sisters enough for their indulgence, patience, and laughter. All three of us had "meltdowns" where we had to bitch at each other, but hey, at this point, we are close enough to do that.
I see Dr. B tomorrow - first we haveto see where my bloodwork is at. Pray for healthy red & white blood cell counts and PLATELETS! I hope I can have my FOLFOX tomorrrow!
I will post more later about the trip with pictures.
My hair is growing back in pretty fast, so I don't think I'll completely shave my head. Thanks to AC & Jean in Texas and Margaret & the Park family for all the hats. Margaret, her daughter Taylor (my new adopted daughter), and my sisters were in a Cancer Walk in Duncanville last Saturday. (We spent 1962-1969 in Duncanville and had a great experience growing up there. ) I had to ride in a wheelchair, and my dear friend from childhood, Margaret, pushed me most of the way. It was so good to reconnect with some old friends, especially Margaret and her family.
Okay, I gotta go take some pills.
My condolences to the McCrea Family. I cannot tell you how much I will miss Valerie. She was a great inspiration to me. Also, our sympathies to the Ken McKenzie (his wife passed away this week and she as well was a real fighter and inspiration to me), Warren Doyle's family, and Mary's family from Ewe & Me in Ridgway. (Sorry I can't think of Mary's last name.)
Congratulations to new parents and grandparents: Trevor & Erin from our local bakery - a boy, their first, Catcher Easton Latta; the Swim Shop people in Ouray (Jennings, fun people to bowl against),; and Julia Gregory of Austin with her new grandbaby whose name I cannot find at the minute.
Thanks everyone for your prayers, good wishes, etc. You have been a big help!
Just up here in Colorado, glad to be home, but we should be leaving town on Thursday for the spring Gem & Mineral Show in Denver if all goes well, and I can find someone to clean my port in Denver.
Sincerely, Caroline
Thursday, April 05, 2007
CHEMO RESCHEDULED DUE TO WHITE BLOOD CELL COUNT
Note: This first post will be for medical update purposes. The next post will give you the juicy details of our trip to the South.
CHEMO POSTPONED UNTIL TOMORROW
I was not able to have chemo due to high white blood cell count. We're going to try again tomorrow. We did have a productive session in getting medications straightened out - what's for pain, nausea, sleep, and other side effects and the timing of when during the day to take them. Some meds address more that one side effect. My sisters were there to get informed as well, so Robert and I don't have to remember everything. It's always nourishing to my soul to be with my two sisters.
As I taper off the steroids for the pain in my left leg due to radiation myositis is coming back. I increased my dosage for the pain right after the doctors's appointment yesterday and fell asleep eating Ravioli di Portabello at the Olive Garden. (I did get about five bread sticks in before I got too sleepy.) I took a nice nap in the car and later at home. I took more pain med at bedtime and slept until about 4:00 am. I did not need a sleeping pill.
The steroids and lack of sleep really sent me into a manic state. I did not want to go to bed because I had lots of energy and creative rushes. But I also got combative as well. For those of you that have had to experience my argumentative side, I apologize. (I was in a carpool in 9th grade, and this one boy's mother would tell him, "Robert, you're so argumentive." And he would reply, "Mother, the word is argumentative and I am not." To this day, I have to look the word up to remember which spelling it really is.) I specifically apologize to Barbara Peterson and James Pettingill of the Elks for demanding a few last ads as the Elk's cookbook went to press last week to be ready in time for Fourth of July. So we will have a new, local cookbook this summer! I missed the deadline to get my recipe in, but I'm sure there will be some great ones.
We stayed with George & Glenda Moore last weekend in Marble Falls, and they were wonderful to us. George has given me lots of information and inspiriation as I go into this new FOLFOX chemo regime which he was on. We also hooked up with an old high school friend of mine, Julia Gregory, who is a naturalist for the State of Texas. We visited the Bamberger Ranch where Julia often volunteers. It is a ranch that started out very run down, and through many simple conservation techniques has been turned into a very productive operation on many levels. We were all excited about and impressed by what the Bamberger Family has done. You can get more info at their website - bambergerranch.org. I do owe an apology to the Moores as I was on the grumpy side on Sunday night. Thanks George & Glenda for putting up with me! And by the way, my friend Julia's mother (Shirley) is dating Doris Sutton's brother, and the couple may be coming for a visit this summer. I hope to get back to Austin later this month for another geololgy outing with George and Glenda.
We did managae to catch Jill Patterson for lunch in Lubbock on our drive home. I called her up and said, "Jill! I need to do a major face plant in a plate of Tex-Mex." And she so understood. So we met at El Chico. Her maternal grandmother recently passed away. My condoloscences to the Patterson Family. Jill will be working at Buckskin Booksellers this summer. I have stolen her from the Variety Store, but the Williams are still speaking to me.
MY HAIR IS FALLING OUT
Okay, it's finally happening. My hair is coming out in clumps. No, I don't really want to lose my hair, but then again, consider the possiblities. When they made the first Star Trek movie and they had that bald, gorgeous V-ger woman, I said "That's the planet I want to be from." I've always wanted to be a Vulcan. I already have the ears. Really. I wanted to wear them to bowling with my Quark Bar bowling shirt, but I never had the time to get them glued on. So if you see me around town with pointy ears. . .
TUMORS, LOTS OF TUMORS
After my last scan they counted about 12 tumors in my liver, four to six of which look troublesome including one on the left side which has had little or no tumors. Some of the tumors have "daughters". The biggest ones have not grown thtat much.
We are hoping the FOLFOX will halt or slow down the tumor growth. We also plan to look into some other procedures at Anschutz Center at CU.
In the mean time, I am enjoying life. Another spring for me. Seeing old friends, making amends, and planning for one crazy funeral to go out in style.
But I still say, tumors, hairballs, who cares. I really don't plan to leave until I'm ready. Not sure I get to choose, but I think God, the universe, or whatever you believe in is going to give me more time than the doctors think. Besides, I want to channel Verena Jacobson one more time for the Ouray County Historical Society's "Vignettes of History" to be staged this fall in Montrose.
Just up here in Colorado watching the sun go in and out of the clouds and having my sisters here. God bless us all.
Sincerely, Caroline
P.S. Thank you Diane King for sending the box of Smooth Move tea.
And thanks to Dorothy Davis from my cancer support group in GJ who came by to see me at the cancer center yesterday. Her family owned the Wiesbaden at one time.
CHEMO POSTPONED UNTIL TOMORROW
I was not able to have chemo due to high white blood cell count. We're going to try again tomorrow. We did have a productive session in getting medications straightened out - what's for pain, nausea, sleep, and other side effects and the timing of when during the day to take them. Some meds address more that one side effect. My sisters were there to get informed as well, so Robert and I don't have to remember everything. It's always nourishing to my soul to be with my two sisters.
As I taper off the steroids for the pain in my left leg due to radiation myositis is coming back. I increased my dosage for the pain right after the doctors's appointment yesterday and fell asleep eating Ravioli di Portabello at the Olive Garden. (I did get about five bread sticks in before I got too sleepy.) I took a nice nap in the car and later at home. I took more pain med at bedtime and slept until about 4:00 am. I did not need a sleeping pill.
The steroids and lack of sleep really sent me into a manic state. I did not want to go to bed because I had lots of energy and creative rushes. But I also got combative as well. For those of you that have had to experience my argumentative side, I apologize. (I was in a carpool in 9th grade, and this one boy's mother would tell him, "Robert, you're so argumentive." And he would reply, "Mother, the word is argumentative and I am not." To this day, I have to look the word up to remember which spelling it really is.) I specifically apologize to Barbara Peterson and James Pettingill of the Elks for demanding a few last ads as the Elk's cookbook went to press last week to be ready in time for Fourth of July. So we will have a new, local cookbook this summer! I missed the deadline to get my recipe in, but I'm sure there will be some great ones.
We stayed with George & Glenda Moore last weekend in Marble Falls, and they were wonderful to us. George has given me lots of information and inspiriation as I go into this new FOLFOX chemo regime which he was on. We also hooked up with an old high school friend of mine, Julia Gregory, who is a naturalist for the State of Texas. We visited the Bamberger Ranch where Julia often volunteers. It is a ranch that started out very run down, and through many simple conservation techniques has been turned into a very productive operation on many levels. We were all excited about and impressed by what the Bamberger Family has done. You can get more info at their website - bambergerranch.org. I do owe an apology to the Moores as I was on the grumpy side on Sunday night. Thanks George & Glenda for putting up with me! And by the way, my friend Julia's mother (Shirley) is dating Doris Sutton's brother, and the couple may be coming for a visit this summer. I hope to get back to Austin later this month for another geololgy outing with George and Glenda.
We did managae to catch Jill Patterson for lunch in Lubbock on our drive home. I called her up and said, "Jill! I need to do a major face plant in a plate of Tex-Mex." And she so understood. So we met at El Chico. Her maternal grandmother recently passed away. My condoloscences to the Patterson Family. Jill will be working at Buckskin Booksellers this summer. I have stolen her from the Variety Store, but the Williams are still speaking to me.
MY HAIR IS FALLING OUT
Okay, it's finally happening. My hair is coming out in clumps. No, I don't really want to lose my hair, but then again, consider the possiblities. When they made the first Star Trek movie and they had that bald, gorgeous V-ger woman, I said "That's the planet I want to be from." I've always wanted to be a Vulcan. I already have the ears. Really. I wanted to wear them to bowling with my Quark Bar bowling shirt, but I never had the time to get them glued on. So if you see me around town with pointy ears. . .
TUMORS, LOTS OF TUMORS
After my last scan they counted about 12 tumors in my liver, four to six of which look troublesome including one on the left side which has had little or no tumors. Some of the tumors have "daughters". The biggest ones have not grown thtat much.
We are hoping the FOLFOX will halt or slow down the tumor growth. We also plan to look into some other procedures at Anschutz Center at CU.
In the mean time, I am enjoying life. Another spring for me. Seeing old friends, making amends, and planning for one crazy funeral to go out in style.
But I still say, tumors, hairballs, who cares. I really don't plan to leave until I'm ready. Not sure I get to choose, but I think God, the universe, or whatever you believe in is going to give me more time than the doctors think. Besides, I want to channel Verena Jacobson one more time for the Ouray County Historical Society's "Vignettes of History" to be staged this fall in Montrose.
Just up here in Colorado watching the sun go in and out of the clouds and having my sisters here. God bless us all.
Sincerely, Caroline
P.S. Thank you Diane King for sending the box of Smooth Move tea.
And thanks to Dorothy Davis from my cancer support group in GJ who came by to see me at the cancer center yesterday. Her family owned the Wiesbaden at one time.
Wednesday, April 04, 2007
Home from Our Trip South
As it is late, I'm just going to say at this point that we had a really wonderful trip to Mississippi and Texas. We got home last night about 2am.
My sisters Suzie & Diane arrived from Prescott today. We will be seeing Dr. Bergen tomorrow to discuss various plans and to get my second chemo on the FOLFOX pump. I will have physical therapy on Friday and am checking in with my local doctor as well. A home health nurse will be in charge of flushing my port.
I'm tapering off the steroids which will make life easier for everyone. My leg is starting to hurt as I'm tapering off, so we are concerned about that. The leg pain is from the radiation recall, not cancer or any other treatment.
Just up here in Colorado, headed to bed.
Thanks again for prayers and so forth.
Sincerely, Caroline
My sisters Suzie & Diane arrived from Prescott today. We will be seeing Dr. Bergen tomorrow to discuss various plans and to get my second chemo on the FOLFOX pump. I will have physical therapy on Friday and am checking in with my local doctor as well. A home health nurse will be in charge of flushing my port.
I'm tapering off the steroids which will make life easier for everyone. My leg is starting to hurt as I'm tapering off, so we are concerned about that. The leg pain is from the radiation recall, not cancer or any other treatment.
Just up here in Colorado, headed to bed.
Thanks again for prayers and so forth.
Sincerely, Caroline
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