Holy cow
- I didn't mean to ignore my blog for this long. I am so sorry!
I'll do my best to update the what's happened over the past week.
Yikes!
Well, Monday morning, I went into work to finalize my move and to the new facility. It was also my last day before I went out on short-term disability. The decision to go our on STD was not as easy as I though it would be, since I really like my job and the folks I work with, but for me I needed to mental break.
Tuesday morning, Mom, Dad and I went into CTCA for a meeting with the chiropractor, mind/body therapist, and later in the day, acupuncture. The chiropractor (Chuck/Dr McDonald) is awesome! He's very concerned about making sure that he helps me in all areas, not just adjustments. He did find some stuff in my back that needed adjustments, and they have honestly seemed to help. He got some crackles out of my neck that were terrifying!
After that, we went off to meet with Steve for mind/body - he gave us some breathing techniques to help calm the mind, and they actually work! I've also met with him once more (more about that in another post), and I really am glad he's on my team. We also had a consult appointment with Dr Webber, the gastro dr. Another amazing person that I'm glad is on my team. He lost his daughter to cancer when she was 24, so he was really able to talk with my parents from that perspective. I know/hope that helped them. Dr. Webber was just amazing - kind, gentle, and another person I'm glad is on my team.
Once we were done with that meeting, Mom and Dad headed home, and I hung around a bit. Had lunch with my friend Marisa in their marketing department, and then just chilled. Went into acupuncture, with much hesitation. I have never done it before, but I think I'm going to go back. He's treating me for nausea, and I'm hopeful. :) It was definitely an experience - as someone who was petrified of needles, having them throughout my body (including one in my forehead, one in each ear, and some in my legs and arms) was definitely an experience.
Wednesday was treatment plan day, and the one I was most anxious about. You go in, wondering what they are going to say, what's going to happen, etc. We were supposed to meet with Dr Granick, but he had been double booked, so we met with Dr Shilte. And, I love him. He's awesome. So kind and gentle. The two doctors work with the same care team and they all work together as a team, so I'll get to know Dr Granick as we continue treatment. Dr S spent a ton of time with my parents and I, reviewing and updating his notes, asking me a ton of questions, and answering our questions. The good news is that my CEA level has gone down (yeah!!!). Granted, they are comparing two different lab results, but the number went from 10.8 to 5.3 after one chemo! So, it looks like the Folfiri/Avastin is working, and we are going to continue with that.
The thing is, we are going to continue it by making me my own chemo cocktail. I didn't know they could do this, but they are adjusting my drug levels, meaning they can decrease some by 50% and others by 25%, to try to give me the best fighting chance without making my life miserable (now there's a concept). They also adjusted some of my anti-nausea meds and added some naturopathic stuff to help with my diarrhea. In addition, they added IV fluids during days one and three, to help me flush the system and hopefully help with the nausea. Overall, we felt very confident with what we heard on Wednesday. It was amazing to sit there for hours, and have them all answer questions, explain to us the individual chemo drugs and how/why they work, why we are taking certain drugs to off-set nausea, etc. They also allowed me to push off my chemo until Monday the 16th, which was wonderful b/c Julia's 10th birthday was on the 13th, and I didn't want to be fighting off nausea, etc. while trying to celebrate her birthday. Amazing - this balance they are allowing me is just so reassuring.
Mom, Dad, Levi and I all agreed, after that appointment, that this is a good move. Now, the question is to see if they can walk the walk. So far, so good. :)
Well, Monday morning, I went into work to finalize my move and to the new facility. It was also my last day before I went out on short-term disability. The decision to go our on STD was not as easy as I though it would be, since I really like my job and the folks I work with, but for me I needed to mental break.
Tuesday morning, Mom, Dad and I went into CTCA for a meeting with the chiropractor, mind/body therapist, and later in the day, acupuncture. The chiropractor (Chuck/Dr McDonald) is awesome! He's very concerned about making sure that he helps me in all areas, not just adjustments. He did find some stuff in my back that needed adjustments, and they have honestly seemed to help. He got some crackles out of my neck that were terrifying!
After that, we went off to meet with Steve for mind/body - he gave us some breathing techniques to help calm the mind, and they actually work! I've also met with him once more (more about that in another post), and I really am glad he's on my team. We also had a consult appointment with Dr Webber, the gastro dr. Another amazing person that I'm glad is on my team. He lost his daughter to cancer when she was 24, so he was really able to talk with my parents from that perspective. I know/hope that helped them. Dr. Webber was just amazing - kind, gentle, and another person I'm glad is on my team.
Once we were done with that meeting, Mom and Dad headed home, and I hung around a bit. Had lunch with my friend Marisa in their marketing department, and then just chilled. Went into acupuncture, with much hesitation. I have never done it before, but I think I'm going to go back. He's treating me for nausea, and I'm hopeful. :) It was definitely an experience - as someone who was petrified of needles, having them throughout my body (including one in my forehead, one in each ear, and some in my legs and arms) was definitely an experience.
Wednesday was treatment plan day, and the one I was most anxious about. You go in, wondering what they are going to say, what's going to happen, etc. We were supposed to meet with Dr Granick, but he had been double booked, so we met with Dr Shilte. And, I love him. He's awesome. So kind and gentle. The two doctors work with the same care team and they all work together as a team, so I'll get to know Dr Granick as we continue treatment. Dr S spent a ton of time with my parents and I, reviewing and updating his notes, asking me a ton of questions, and answering our questions. The good news is that my CEA level has gone down (yeah!!!). Granted, they are comparing two different lab results, but the number went from 10.8 to 5.3 after one chemo! So, it looks like the Folfiri/Avastin is working, and we are going to continue with that.
The thing is, we are going to continue it by making me my own chemo cocktail. I didn't know they could do this, but they are adjusting my drug levels, meaning they can decrease some by 50% and others by 25%, to try to give me the best fighting chance without making my life miserable (now there's a concept). They also adjusted some of my anti-nausea meds and added some naturopathic stuff to help with my diarrhea. In addition, they added IV fluids during days one and three, to help me flush the system and hopefully help with the nausea. Overall, we felt very confident with what we heard on Wednesday. It was amazing to sit there for hours, and have them all answer questions, explain to us the individual chemo drugs and how/why they work, why we are taking certain drugs to off-set nausea, etc. They also allowed me to push off my chemo until Monday the 16th, which was wonderful b/c Julia's 10th birthday was on the 13th, and I didn't want to be fighting off nausea, etc. while trying to celebrate her birthday. Amazing - this balance they are allowing me is just so reassuring.
Mom, Dad, Levi and I all agreed, after that appointment, that this is a good move. Now, the question is to see if they can walk the walk. So far, so good. :)
Comments:
Sharon
R. said...
So
I'm sorry, but I had to chuckle at you doing acupuncture. I still remember
being on the phone with Mom when she had to run bec they were going to do an
epidural with Julia and I could hear you, clearly displeased, in the background!
:)
April
17, 2012 at 10:58 AM
Later:
When I
had Julia, I didn't want her born on the 13th of the month....I was worried she
would eventually have a birthday on Friday the 13th. Well, since that
happened, and her 10th birthday was on Friday the 13th, my views have changed.
This birthday was the best she's ever had. It was awesome.
My gorgeous
birthday girl - she got to dress up for school, and was the happiest little
girl on campus that day!
Couldn't
let the day go without getting a photo of us.
Julia had
4 friends over for a sleepover, and it was epic. They had such a good time!
We also
had a party on Saturday with some friends. This is the morning after the
sleepover, and they are recovering, while watching the new Muppet movie.
Fresh waffles, good movies, etc. All in all, a good morning!
I don't
know where this gorgeous young lady came from, but I am so proud that she's
mine.
God,
isn't she beautiful???
The past
two days caught up with her, and she crashed Saturday night.
Overall, it was an amazing weekend. We had a wonderful time
with family and friends, and we are so grateful for the many memories.
It's amazing to me to think that I've been a mom for ten years.
As a teenager, I didn't have a single desire to have children. Now,
I can't imagine what my life would be like without them. They are my life,
my pride and joy, my soul living outside of my body. Knowing that my
children are growing up to be such amazing people is such a
fantastic privilege.
They are
my reason for fighting.
Comments:
Ioana said...
Happy
(belated) Birthday to Julia and many-many-many happy returns of this wonderful
day to both of you.
April
18, 2012 at 12:05 PM
Later:
Well,
yesterday started chemo round two, day one. First round at CTCA. I
was anxious, but optimistic walking in there. Still don't want to be
there, but I feel like this is the best place to be.
We walked into infusion, and were sat in a small cubicle (videos of the infusion rooms here and here) for vital signs. Not surprisingly, my bp was up a bit, but the anxiety accounted for that. Once that was done, we got escorted over to my chemo cube. It faced the Estrella Mountains and an airplane parking lot, which was so cool! Paul (a volunteer - I think) was the one who escorted us to the cube, and he got me a bowl of fresh fruit, water, and warm blankets. Love him!
OH! My oncologist, Dr. Shiltde, came up to see me before chemo started. What an awesome treat - I hardly ever saw my previous oncologist, so to see him that morning was really reassuring.
And - the funniest point of the day was when my chemo nurse brought me preventative mouthwash. I almost fell out of my chair - of course, she didn't know of the debacle with Icky Nurse, so we had to explain it to her. It was epic, and spoke volumes to the differences between the two facilities.
My nurse Carla was awesome, and walked us through the entire day. She accessed my port (thankfully, they had given me Emla cream to put over the port an hour before chemo, which completely numbed the area and made the accessing totally pain-free!) and got me hooked up to my pre-meds. Next came the chemo, and I was good through most of it. Levi was able to make it to the hospital before he headed out to California for the week, which was awesome. He hadn't been to the facility past the front lobby, so I think it was really great for him to be able to see where I am being treated, and by whom. We had lunch together (courtesy of the executive chef...yum!), which was great. Then, he headed out to the airport and I continued chemo.
My chemo was pretty good overall, until they started my 5FU push. So, all of the other drugs are pushed via IV into my port, but the 5FU is the drug that is in my pump. They start it with a push manually, then hook me up to the pump. Apparently, I didn't react well, and I got really pale. The nurse got me an Ativan, which made me loopy but more relaxed, and seemed to help my nausea that kicked up. I think it's partially a physical reaction, and partially a subconscious reaction - knowing that this is the drug that likely causes me issues didn't help.
Getting home was okay - nausea kicked up some more, so I took a Compazine, which made me that much more tired. But, it helped with the nausea eventually, so no complaints.
Oh - almost forgot - they ran a blood test thinking that the spots in my lungs were Valley Fever, which is something that most folks in this part of the country are exposed to once you've lived here long enough. You can read more about Valley Fever here. Unfortunately, I haven't been exposed to it, which means that the spots in my lungs are still up for debate on the origin. Might be cancer. Might be scar tissue from something else. I'm banking on cancer, and pushing to make sure we do everything possible to stop it from growing.
Anyways, I woke up this morning with little nausea. The Zofran seems to be keeping that at bay, thus far. My energy level is pretty good this time around, and I'm grateful for that. The pump I have is a bit bigger and heavier than I'm used to, but it's also quieter, which I like. I'm feeling pretty "normal" today, which is great. On a scale of 0-10 for nausea, I'm at about a 1, which I'm totally happy with. Watermelon seems to be my new best friend, and is one of the only things that tastes delicious right now.
I'll try to keep this more updated as time goes on. Please forgive me for not updating as much as I think people would like - more often than not, after a day at CTCA, the last thing I want to do is to recount my day here. I will do my best to keep it updated, but please forgive me if it's not as timely as it could be.
I'm off to get my hair cut and colored (before it all falls out - the scalp tingling is a certain sign that I'll lose some of it). More in a bit - here's hoping for a day with little chemo!
We walked into infusion, and were sat in a small cubicle (videos of the infusion rooms here and here) for vital signs. Not surprisingly, my bp was up a bit, but the anxiety accounted for that. Once that was done, we got escorted over to my chemo cube. It faced the Estrella Mountains and an airplane parking lot, which was so cool! Paul (a volunteer - I think) was the one who escorted us to the cube, and he got me a bowl of fresh fruit, water, and warm blankets. Love him!
OH! My oncologist, Dr. Shiltde, came up to see me before chemo started. What an awesome treat - I hardly ever saw my previous oncologist, so to see him that morning was really reassuring.
And - the funniest point of the day was when my chemo nurse brought me preventative mouthwash. I almost fell out of my chair - of course, she didn't know of the debacle with Icky Nurse, so we had to explain it to her. It was epic, and spoke volumes to the differences between the two facilities.
My nurse Carla was awesome, and walked us through the entire day. She accessed my port (thankfully, they had given me Emla cream to put over the port an hour before chemo, which completely numbed the area and made the accessing totally pain-free!) and got me hooked up to my pre-meds. Next came the chemo, and I was good through most of it. Levi was able to make it to the hospital before he headed out to California for the week, which was awesome. He hadn't been to the facility past the front lobby, so I think it was really great for him to be able to see where I am being treated, and by whom. We had lunch together (courtesy of the executive chef...yum!), which was great. Then, he headed out to the airport and I continued chemo.
My chemo was pretty good overall, until they started my 5FU push. So, all of the other drugs are pushed via IV into my port, but the 5FU is the drug that is in my pump. They start it with a push manually, then hook me up to the pump. Apparently, I didn't react well, and I got really pale. The nurse got me an Ativan, which made me loopy but more relaxed, and seemed to help my nausea that kicked up. I think it's partially a physical reaction, and partially a subconscious reaction - knowing that this is the drug that likely causes me issues didn't help.
Getting home was okay - nausea kicked up some more, so I took a Compazine, which made me that much more tired. But, it helped with the nausea eventually, so no complaints.
Oh - almost forgot - they ran a blood test thinking that the spots in my lungs were Valley Fever, which is something that most folks in this part of the country are exposed to once you've lived here long enough. You can read more about Valley Fever here. Unfortunately, I haven't been exposed to it, which means that the spots in my lungs are still up for debate on the origin. Might be cancer. Might be scar tissue from something else. I'm banking on cancer, and pushing to make sure we do everything possible to stop it from growing.
Anyways, I woke up this morning with little nausea. The Zofran seems to be keeping that at bay, thus far. My energy level is pretty good this time around, and I'm grateful for that. The pump I have is a bit bigger and heavier than I'm used to, but it's also quieter, which I like. I'm feeling pretty "normal" today, which is great. On a scale of 0-10 for nausea, I'm at about a 1, which I'm totally happy with. Watermelon seems to be my new best friend, and is one of the only things that tastes delicious right now.
I'll try to keep this more updated as time goes on. Please forgive me for not updating as much as I think people would like - more often than not, after a day at CTCA, the last thing I want to do is to recount my day here. I will do my best to keep it updated, but please forgive me if it's not as timely as it could be.
I'm off to get my hair cut and colored (before it all falls out - the scalp tingling is a certain sign that I'll lose some of it). More in a bit - here's hoping for a day with little chemo!
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