I didn't update two weeks ago because everything was the same. I knew I was going to have a PET scan this time and decided to just wait and post.
First of all, I had a PET scan on Monday, Jan 24th. It came back "miraculous." The liver met has completely resolved. They are a little skeptical, so we are doing an MRI to make sure. Also, the colon cancer didn't show up and that was totally unexpected. The chemo regimen was to stop the met (spreading) but they didn't expect it to shrink. More on this later in the post.
This trip has been interesting. I had a very good visit with the dr yesterday. I had my chemo and I also had an appt with my oncologist. They worked me in to see her early so everyone could leave because of the impending storm. The doctor is, of course, very happy and said this is the plan now:
She said she has been hesitant to take me off the Avastin because I was doing so well. She is excited about the outcome and gave me a complete report of the scan. She said we'd stop the Avastin now. YEAH!! Wednesday, Jan. 26 was my last. Mainly because I have to be off of it for 6-8 weeks before surgery. She wants me to complete the 12 regular regimens of Folfox, which is everything I do now, but the Avastin. This treatment is #9 and I'll probably have one more and then stop for surgery.
Dr. Dogra, the oncologist, said she isn't sure what we'll do afte the surgery. We'll probably finish any chemo - 2 sessions, and then depending on the CEA counts, if they stay down, she said she may just monitor me. . .blood tests every few weeks. That's awesome!!!! That means I could be through with chemo the first of May. All depends on the counts.
She told me how unusual it is that the PET shows nothing., . .and seemed a little skeptical. We know it is still there because the counts aren't at 1-3 . My last test on Jan 24th showed the counts were at 8. She then told me she would refer me to the surgeon.
I was able to see the surgeon as I was finishing my chemo. It worked out so well. The offices are across the building from each other - a two minute walk. It is very convenient.
Dr. Seid, the surgeon, went in and read my history - took him 30 mins because he also called Dr Dogra to talk to her. He walked in and said, "I just read your history. You've had an interesting year!" Understatement right? lol He was very nice and explained things thoroughly. He is either Japanese or Chinese. He also said it would be one operation. . . lapriscopically. He looked at my stomach to see if he could use any of the previous ports, . . but no such luck. So, we add four more to the dot to dot arrangement. I already look like I have been shot at - AND HIT!! lol I have 10 scars so far. Add another 4 and it will be very comical. He asked about my hysterectomy and who did it. I explained who I went to, Dr. Garg, and that it was done by the "DaVinci method." He has heard of Dr. Garg. He said, "That's all new technique and skill." He does major surgeries like that and I think was surprised that Kaiser let me go there. As I have said before, God said "You are on this path, and these are the people that are going to take care of you." It's been amazing.
Dr. Seid explained where he would cut and why. I will have a larger scar because he needs to remove the colon through some spot. . but the rest will be little ones. He also said he wanted me to have a colonosopy again because he wants to know exactly where the tumors are and they can "die the tumors or tatoo them" and he won't have to guess which part of the colon needs to come out. He will do it in one surgery, . . .disect and reconnect. . .that's exciting. No colostomy bag. He said I am not inflamed, infected, or an emergency so it should go smoothly. It will take about 4 hours to complete from start to finish.
As I was leaving, he said, "Do you realize how unusual it is not to see anything on the PET scan? I told him I have a son in Med school and a son-in-law that is an I/R dr., so I have an idea of how unusual my whole history is.
The MRI is scheduled for Feb 17 and the colonoscopy Feb 18.
I think that is pretty much it.
Again, thank you for all your prayers and care.
The only hang-up of the whole day was a storm that hit as I was driving to Bryce and Cathi's. On a good day, regular traffic, it takes 90 minutes. I left VA around 3:30 pm and didn't get to Bryce and Cathi's until after midnight, so it was nearly 9 hours to get here. I sat on one stretch of the road for nearly 4 hours. The weather started with sleet and then snow and dumped about 6-9 inches. I didn't see any real accidents, but any incline in the road was slick and stopped traffic. People had spun out, pulled over and it literally looked like dooms day movie. Some were literally just stopped in the middle of the lane and couldn't move. I saw abandoned cars in the far left lane which made me wonder what the plow would do. I had over a 4th of a tank of gas, but I had to fill up as soon as I got a chance to get off the road. Most of the exits were not plowed and people were stuck on the exits. I didn't want to run out of gas, so at times I turned the car off, lights and all, and just let the snow come. Within five minutes the entire car was covered and I was in a cave. The car stayed warm for up to an hour, and I'd get out, clean it off, and get back in and warm it up. It wasn't as bad as it sounds.
So the adventure continues. I'll post when I get the surgery scheduled. Again, thanks for all your prayers, concern and will wishes.
Friday, January 28, 2011
Wednesday, December 29, 2010
tests as of 12/21/2010
The last two weeks have been "cautionary" to say the least. My tests two weeks ago showed the CEA going down significantly, but the white blood cells were dropping too low and the platelets were bottomed out.
I asked the dr about the injection to boost the white blood cells and she said I could do it. However, I was already on the way home from VA to NC and didn't have access to a Kaiser pharmacy. I thought they would be able to send it to the Walmart pharmacy down there. However, protocals didn't allow for that, so I waited to have it sent by mail. It can take 8-10 business days, and with the holidays I wasn't surprised that it didn't come.
I had prayed all week that the white cells would be up. I haven't been working in the temple since I started chemo, but Wed, December 23, I felt I should go Thurs night with Dan and do something. I contacted the shift coordinator, Sis. Goodwyn, and she worked it out that I could come and help. It felt so good to be there and it felt "right" that I was there.
I have blood tests done two days prior to each chemo treatment. This gives the dr the chance to review the tests and give the ok for the oncology pharmacists to prepare the drugs. I normally would have the blood tests on Monday, and then the chemo Wed - Friday. Because of the New Year Holiday the oncology dept had December 31st off. That made it so I had to have chemo Tues, Wed and Thurs. . and that the blood tests had to be done on Sunday. However, this particular Sunday, NC got hit with a super duper snow storm. We got 8 1/2 inches of snow and it literally shuts things down when it snows. The forecast was to snow from 6:00 am Sunday morning until 6:00 pm Monday. We headed out at 6:30 am Sunday morning but after only being able to go 30 miles in a hour, and cars slipping and sliding in front of us and off to the side of us, we decided it just wasn't meant to be. We turned around and went home.
It stopped snowing about 10:00 am Sunday morning and the sun was shining. Monday morning they had cleared all the roads and Dan asked me about going anyway. He had an appt for Tues morning to have some minor skin cancer removed from his nose. I had called my drs office and told them I wasn't able to get the blood tests. They called back at 10:30 am and said to get there as quickly as I could and get them done.
The tests came back. I started with a CEA marker of 25 - it was 23 two weeks ago and 15 this time. The lower it goes, the better. Normal CEA counts are between 1-4. The white blood cells were miraculous. They went from 1.4 to 2.1 - we want them to go up. The platelets did the same. . .they went up too. And all without the injections!! Two weeks ago, the results had also come back great, and Bryce commented that night that one of the things he enjoyed about medical school (that's why they are in Maryland) is learning how things work. He said, "but you are not following the pattern and making this difficult." and then smiled. It's all in the hands of a higher authority.
I feel so blessed. I know they wouldn't have changed so drastically if it weren't for blessings and all those remembering me.
It took us 5 hours to get to VA on Monday. It is normally a 4 1/2 hour ride to the lab, then it takes 2 hours for the results to come in, and then the pharmacist has to mix it. The pharmacist got the chemo prepared. I appreciate whoever worked late Monday night for me.
Dan was able to get his skin cancer off, and I was able to get my treatment. We feel very fortunate that we were able to stay with the regimen. One of the things they said in the chemo class was to try to stay on track I honestly just put it in God's hands. I was doing everything in my power to make it possible. I just had to have faith that whatever was the best for me, would be done.
Jason, has a sister-in-law that writes a beautiful blog. They have had a tragedy this past summer and she shared one of her dreams on the blog. She said she had not been able to sleep, and she prayed that she would be able to. She then fell asleep and dreamed that she was on a roller coaster, in a car similar to that of a cattle car with bars. The train was traveling fast and the people were hanging on, scared and crying. She was also hanging on, and as she glanced around the car she noticed a little girl standing in the middle of the train car. The little girl "lifted her hands in the air and was laughing as the wind and the world swept around her." She followed the little girl's example and felt "life." I loved that post. It was right after my hysterectomy and I felt the same thing. We need to enjoy life. I have told several people since then, that God has a plan for me, and I am along for the ride. I need to keep my faith, serve when and how I can, and all things "shall work together for my good" - whatever that may be.
Before I end, I cannot begin to express my appreciation for my family. My children call and show concern and offer to do what they can. I love that I can talk to my grandchildren by video chat and on the phone. Nothing makes a day brighter than to talk to your 17 mo old granddaughter on the phone and have her just listen and seemingly "hanging on every word" (which I know she is not - lol- she just likes her mother's phone) and then to video chat with my sweet 14 mos old granddaughter and do "itsy bitsy spider" and have her do it with me. I also want to say how appreciative I am of my "in-law" children. They have been as close to me as my own. Ruth in the Old Testament holds nothing over my own "daughters." LaDonna and Cathi are always so caring. . and so are my sons "by marriage." I wondered how much we really plan out families in heaven before we come. . .because we truly have a blessed one. Our son-in-law, Jason, as interpreted scans for me, offered advice, and been a great support. It's nice not to have to wait for the drs report, and also to have a second opinion. Jason has kept me educated with good questions to ask the dr. She's been impressed as well. My brother and all of his famly, my extended family - my aunt, uncle and cousins. . .thank you for your preayers, concern and emails.
And the same to all my friends. . .my special "ward family" and "temple family." I know it is easier for me because of all of you. You have all been a great support and blessing in my life.
May the new year bring happiness and joy to all of us.
I asked the dr about the injection to boost the white blood cells and she said I could do it. However, I was already on the way home from VA to NC and didn't have access to a Kaiser pharmacy. I thought they would be able to send it to the Walmart pharmacy down there. However, protocals didn't allow for that, so I waited to have it sent by mail. It can take 8-10 business days, and with the holidays I wasn't surprised that it didn't come.
I had prayed all week that the white cells would be up. I haven't been working in the temple since I started chemo, but Wed, December 23, I felt I should go Thurs night with Dan and do something. I contacted the shift coordinator, Sis. Goodwyn, and she worked it out that I could come and help. It felt so good to be there and it felt "right" that I was there.
I have blood tests done two days prior to each chemo treatment. This gives the dr the chance to review the tests and give the ok for the oncology pharmacists to prepare the drugs. I normally would have the blood tests on Monday, and then the chemo Wed - Friday. Because of the New Year Holiday the oncology dept had December 31st off. That made it so I had to have chemo Tues, Wed and Thurs. . and that the blood tests had to be done on Sunday. However, this particular Sunday, NC got hit with a super duper snow storm. We got 8 1/2 inches of snow and it literally shuts things down when it snows. The forecast was to snow from 6:00 am Sunday morning until 6:00 pm Monday. We headed out at 6:30 am Sunday morning but after only being able to go 30 miles in a hour, and cars slipping and sliding in front of us and off to the side of us, we decided it just wasn't meant to be. We turned around and went home.
It stopped snowing about 10:00 am Sunday morning and the sun was shining. Monday morning they had cleared all the roads and Dan asked me about going anyway. He had an appt for Tues morning to have some minor skin cancer removed from his nose. I had called my drs office and told them I wasn't able to get the blood tests. They called back at 10:30 am and said to get there as quickly as I could and get them done.
The tests came back. I started with a CEA marker of 25 - it was 23 two weeks ago and 15 this time. The lower it goes, the better. Normal CEA counts are between 1-4. The white blood cells were miraculous. They went from 1.4 to 2.1 - we want them to go up. The platelets did the same. . .they went up too. And all without the injections!! Two weeks ago, the results had also come back great, and Bryce commented that night that one of the things he enjoyed about medical school (that's why they are in Maryland) is learning how things work. He said, "but you are not following the pattern and making this difficult." and then smiled. It's all in the hands of a higher authority.
I feel so blessed. I know they wouldn't have changed so drastically if it weren't for blessings and all those remembering me.
It took us 5 hours to get to VA on Monday. It is normally a 4 1/2 hour ride to the lab, then it takes 2 hours for the results to come in, and then the pharmacist has to mix it. The pharmacist got the chemo prepared. I appreciate whoever worked late Monday night for me.
Dan was able to get his skin cancer off, and I was able to get my treatment. We feel very fortunate that we were able to stay with the regimen. One of the things they said in the chemo class was to try to stay on track I honestly just put it in God's hands. I was doing everything in my power to make it possible. I just had to have faith that whatever was the best for me, would be done.
Jason, has a sister-in-law that writes a beautiful blog. They have had a tragedy this past summer and she shared one of her dreams on the blog. She said she had not been able to sleep, and she prayed that she would be able to. She then fell asleep and dreamed that she was on a roller coaster, in a car similar to that of a cattle car with bars. The train was traveling fast and the people were hanging on, scared and crying. She was also hanging on, and as she glanced around the car she noticed a little girl standing in the middle of the train car. The little girl "lifted her hands in the air and was laughing as the wind and the world swept around her." She followed the little girl's example and felt "life." I loved that post. It was right after my hysterectomy and I felt the same thing. We need to enjoy life. I have told several people since then, that God has a plan for me, and I am along for the ride. I need to keep my faith, serve when and how I can, and all things "shall work together for my good" - whatever that may be.
Before I end, I cannot begin to express my appreciation for my family. My children call and show concern and offer to do what they can. I love that I can talk to my grandchildren by video chat and on the phone. Nothing makes a day brighter than to talk to your 17 mo old granddaughter on the phone and have her just listen and seemingly "hanging on every word" (which I know she is not - lol- she just likes her mother's phone) and then to video chat with my sweet 14 mos old granddaughter and do "itsy bitsy spider" and have her do it with me. I also want to say how appreciative I am of my "in-law" children. They have been as close to me as my own. Ruth in the Old Testament holds nothing over my own "daughters." LaDonna and Cathi are always so caring. . and so are my sons "by marriage." I wondered how much we really plan out families in heaven before we come. . .because we truly have a blessed one. Our son-in-law, Jason, as interpreted scans for me, offered advice, and been a great support. It's nice not to have to wait for the drs report, and also to have a second opinion. Jason has kept me educated with good questions to ask the dr. She's been impressed as well. My brother and all of his famly, my extended family - my aunt, uncle and cousins. . .thank you for your preayers, concern and emails.
And the same to all my friends. . .my special "ward family" and "temple family." I know it is easier for me because of all of you. You have all been a great support and blessing in my life.
May the new year bring happiness and joy to all of us.
an informational post
Mark, our son, suggested I do a blog to keep everyone that is interested posted. You may pass the address to those that I may not have remembered to let know I was doing this. For some of my family, I will still send emails to because I know that's easier for them than finding a blog.
For those of you who don't know, I drive to Fairfax, VA ( 5 hours) for my chemo. I am in the oncology dept for about 4 hours receiving 3 drugs through an IV and then have a pump attached for 46 hours following. I am able to stay with Bryce and Cathi, our son and daughter-in-law in Maryland, for the two days waiting for the pump. It was been wonderful for me because they have a little boy, Mark (nearly two). The first two times in ran away crying, . .now he greets me at the door and runs to his playroom (my bedroom while I am there). It's been so much fun getting to know him. Mark, our son, works from home most of the time in North Carolina (we live on the same street) but his company is based Baltimore. He has been able to arrange to work in Baltimore the few days I have chemo and has been able to drive me home.
The last 8 months has been a truly awesome experience. I said that at the temple a few weeks ago and those around me smiled. Not many people can say cancer is an "awesome" experience. For those family and friends that are not members or active members of the Church of Jesus Christ of Latter-Day Saints, you may think that my posts are "over the top." Just know, I am a sane individual. I don't go out on street corners condemming those that are not members. I don't preach everytime I meet someone. However, my faith in God and Jesus Christ, my love of serving, my knowledge of a pre-existence, mortal life, and life hereafter brings me strength and solace. I know I have many loved ones here, and on the other side. Knowing my family is sealed for eternity in the temple is also a blessing. Their love, faith and prayers have strengthened me through all of this. There is nothing more humbling than to hear your grandchildren (all 6 and under) pray that grandma's treatments will make her better.
Now that you know where I am coming from. . .let me tell you about the last 8 mos. They didn't discover what kind of cancer it was until September 2010. It was diagnosed as cancer in April 2010 during a routine gyn exam. After months of tests, and a hysterectomy, it was diagnosed in September as colon cancer. Everyone feared for the worst. For it to show up on a gyn exam. . .I should have been showing many other signs, as that is the "53rd" place colon cancer goes quoting Jason, our son-in-law. He is a dr and it just doesn't go there. I wasn't showing any symptoms, or signs, and we wondered if the test had gotten mixed up in the lab. After a pect scan. . .it showed lymp nodes as well as part of the liver and colon.
I started chemo and the first round didn't show any improvement. I have blood tests every two weeks to check the cancer marker - CEA - (remember that) and to check white blood cells and platelets. The first week didn't show much change, and the CEA went up. Then they started a drug called Avastin. It's wicked, the side effects can be brutal. If you survive the treatment, you survive the cancer is how I look at it. I have had 7 treatments, and have been so blessed. The worst I have is high blood pressure now and a few blood clots in my right lung. Normally Avastin causes internal bleeding, legs swelling, etc, but no, I took the other route and have clots. So my assortment of meds is growing, but all in all, I am doing extremely well.
For those of you who don't know, I drive to Fairfax, VA ( 5 hours) for my chemo. I am in the oncology dept for about 4 hours receiving 3 drugs through an IV and then have a pump attached for 46 hours following. I am able to stay with Bryce and Cathi, our son and daughter-in-law in Maryland, for the two days waiting for the pump. It was been wonderful for me because they have a little boy, Mark (nearly two). The first two times in ran away crying, . .now he greets me at the door and runs to his playroom (my bedroom while I am there). It's been so much fun getting to know him. Mark, our son, works from home most of the time in North Carolina (we live on the same street) but his company is based Baltimore. He has been able to arrange to work in Baltimore the few days I have chemo and has been able to drive me home.
The last 8 months has been a truly awesome experience. I said that at the temple a few weeks ago and those around me smiled. Not many people can say cancer is an "awesome" experience. For those family and friends that are not members or active members of the Church of Jesus Christ of Latter-Day Saints, you may think that my posts are "over the top." Just know, I am a sane individual. I don't go out on street corners condemming those that are not members. I don't preach everytime I meet someone. However, my faith in God and Jesus Christ, my love of serving, my knowledge of a pre-existence, mortal life, and life hereafter brings me strength and solace. I know I have many loved ones here, and on the other side. Knowing my family is sealed for eternity in the temple is also a blessing. Their love, faith and prayers have strengthened me through all of this. There is nothing more humbling than to hear your grandchildren (all 6 and under) pray that grandma's treatments will make her better.
Now that you know where I am coming from. . .let me tell you about the last 8 mos. They didn't discover what kind of cancer it was until September 2010. It was diagnosed as cancer in April 2010 during a routine gyn exam. After months of tests, and a hysterectomy, it was diagnosed in September as colon cancer. Everyone feared for the worst. For it to show up on a gyn exam. . .I should have been showing many other signs, as that is the "53rd" place colon cancer goes quoting Jason, our son-in-law. He is a dr and it just doesn't go there. I wasn't showing any symptoms, or signs, and we wondered if the test had gotten mixed up in the lab. After a pect scan. . .it showed lymp nodes as well as part of the liver and colon.
I started chemo and the first round didn't show any improvement. I have blood tests every two weeks to check the cancer marker - CEA - (remember that) and to check white blood cells and platelets. The first week didn't show much change, and the CEA went up. Then they started a drug called Avastin. It's wicked, the side effects can be brutal. If you survive the treatment, you survive the cancer is how I look at it. I have had 7 treatments, and have been so blessed. The worst I have is high blood pressure now and a few blood clots in my right lung. Normally Avastin causes internal bleeding, legs swelling, etc, but no, I took the other route and have clots. So my assortment of meds is growing, but all in all, I am doing extremely well.
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