So,
apparently, I suck at this "updating the blog" thing....I really
thought I had updated more recently than Dec 23rd. My apologies.
Anywhoo....Happy New Year! We had a wonderfully calm holiday season....thankfully! Levi had a week off, so spending the time together as a family was just amazing. We haven't been able to do that (while I was feeling good) in a long time.
As I said, the good news is that I am feeling better than I have felt in many moons. I am walking completely upright, and mostly without the walker. (Knocking on wood as I type this....yes, I'm serious.) I am mostly pain-free (thanks to the pain meds), and my mental state is better than it's been in a while.
Christmas was, as I had hoped, epic. The kids were spoiled, thanks to the help of many, many Santa's. If you sent the kids something and I haven't personally thanked you, please know that I am working on thank you notes, and they will be going out this week. Levi had spent many weeks making me a bed...yes, a bed. As in, he took wood and hardware from home improvement stores and made us a bed frame. He didn't think it would be done until January or February, but we ended up setting the bed in our room on Christmas morning. It's just gorgeous....I don't have pictures on me (they are on my facebook page, though), but suffice it to say it's made of poplar and black hardware, giving it a very contemporary, rustic look. He also had to make me a step stool - the bed sits very high (I'm 5'4", and the top of the mattress hits just above my belly button), and I was having issues getting into the bed. He's also working on plans to make us matching bed stands, and is working out the logistics for making us each a dresser.
You'd think the man didn't have to work, but all of this is being done on top of working full-time (this month, he's travelling to California each week!). He's a keeper.
He and I celebrated out 12th wedding anniversary on the 29th; we took the kids to a local zoo and spent the day just enjoying the gorgeous weather (it was in the 70's) and each other. Believe it or not, I was able to walk through the entire zoo, using my walker mostly as a carrier for my purse and only sitting for a few brief moments. When we got to the end of the day and it hit me what I had just done.....I was so damn proud! 2 months ago, I couldn't walk around the inpatient unit of the hospital, and today, I walked around the zoo!
It's like a Christmas miracle.
Chemo seems to be working well. I'm now into cycle two of the Erbitux/Xeloda regimen. I'm tolerating the Xeloda fairly well, although in the past day or two, I'm seeing some slight cracking on the tips of a few fingers. Needless to say, that's not unexpected given the dry conditions in Arizona this time of year. Combine that with the potential for hand/foot syndrome from Xeloda...let's just say my hands have been drenched in various lotions the past few days, and I'm heading to the store to get more thick, butter-style lotions today. Last night, I actually slathered my hands in lotion and slept with moisturizing socks over my hands. They didn't stay on all night, but anything helps, right? :)
As far as the Erbitux goes, the rash is still there. Dr. K put me on a hydrocortisone cream to help combat the redness and swelling, and it's actually helping. Between that (which has a moisturizing quality to it) and the 3 other moisturizers I'm using, I seem to be able to combat the dryness pretty well. Last time, the rash was pretty much isolated to my face. This time, I do have some on my face (especially around my nose/mouth area), but the rash and dryness is also on my shoulders and upper torso. The dryness is particularly bothersome - I'm slathering myself with lotion in the morning, and using ultra-moisturizing soaps/washes in the shower.
I feel like a broken record. Moisturize this, moisturize that....
Anyways, I do have some good news to report. Last Friday, we had a check-up with my team. It was day one of round two of chemo, and I had a lab draw for a CEA check. I didn't sleep the night before, worried about how that was going to turn out.
When the team walked in, Dr. K. was with them. As I was only supposed to meet with Kia (my PA) and care team, I was more than a little worried. What bad news did they have to deliver now?
None. My CEA dropped from 101 back in December to 14.6.
Let me repeat that. My CEA dropped from 101 to 14.6!!!
I was shocked, speechless, and in disbelief. I immediately asked them to rerun the test. There had to be a mistake. There was no way....NO WAY....that my number had dropped that much in a month's time. We chatted some more about how I was feeling, and Dr. K said that he took more stock in the fact that I'm feeling better and better each time I see him than he does in a single data point. But, to be sure, we were rerunning the test to ease everyone's minds.
An hour later, we had our answer. The next CEA level came back at 13.7. 13.7!!!!
I don't know if it's sunk it, even now. My number dropped by 80%, by over 86 points.
Honestly, I'm floored. I think I'm still in shock. I will feel much more confident about it when we get a second CEA back (later this month) with similar numbers. Having another result like that will help me feel much better about trusting those numbers.
Even still, I can tell you.....it feels freaking amazing. Just amazing. It made walking into the infusion room a whole hell of a lot easier, and it makes swallowing the Xeloda a lot easier each day. Maybe....maybe, this is the break I've so desperately needed.
I do still feel like there is always this part in my brain that is waiting. Waiting for the next reaction, waiting for the next blood test to come back negatively, waiting for what lies ahead. I've been through so much over the past 6-7 months, that just freely and completely accepting this good news is very, very difficult to do. I am waiting for the other foot to drop, so to speak.
On that note, I'm still dealing with this new body of mine. It's still my body, but there are times lately when I just don't recognize it. Why?
Well, in the same 6-7 month period, I have lost well over 35 pounds. As a result, I have dropped 4 pant sizes. I had to go jeans shopping this weekend because the clothes I have been wearing are literally falling off of me.
*****This next part is going to be hard to type, and may not make it into the blog post at all...we'll see if I have the courage to post it...*****
All right - I decided to post it. I did promise to be honest on this blog, and I think this is part of that. Don't judge me. Just, please....don't judge me.
I can't even believe I'm going to type this, but here it goes. I was up into a size 16/18 pants, depending on the style. I have been used to shopping in the women's clothes for most of my life - I was always/usually in the smallest sizes there, but it was pretty seldom that I shopped in the ladies or juniors department. I frequented Lane Bryant, Torrid, etc. for clothes, and even then, I didn't always find what I was looking for. I usually fit in between the two departments (almost too small for womens, just a bit too big for ladies).
This weekend, I bought size 12 jeans. Several pairs, some that are going to get returned. I am having to buy smaller tops (sizes medium or large), because my current wardrobe is hanging off of me. I tried on a few size 10 jeans this weekend, and they almost fit.
As I have started dressing this new body with the new clothes, it's almost like I feel like an imposter. I don't know this body I'm in. I wore a new pair of jeans yesterday - they are slim cut, sassy little design on the back pockets, adorable little detailing on the front, and a fun wear pattern on the thighs and calves. Very "in" style. I then tucked my shirt in and wore a belt.
I literally cannot tell you the last time I left the house a) wearing a belt, and b) with a tucked in shirt. I did this yesterday, and walked around, asking my friends at CTCA if I looked okay. They were all amazingly generous with their compliments, and it helped, but I still feel like I don't belong in these clothes. I'm hoping that, as I continue wearing these new smaller sizes and trying out new styles, I'll get more comfortable with it. We'll see. Between the new size clothes, the newly (though extremely cautious) confidence, and the vain concern about how my Erbitux rash is making my face look, I really feel like I'm learning a whole new body.
It's so odd.
I had an evaluation with physical therapy last week. I expressed my concern that my weight loss is solely from muscle loss; she reassured me that this is likely not the case. I'm still able to function in life, meaning I'm able to walk, I have good balance, I can do household chores (grocery shopping, laundry, house cleaning, etc.), and I was able to do a lot of the eval tests without much difficulty. She thinks a lot of my issue is related to endurance, and we need to reteach my heart and lungs to work. I'm simultaneously looking forward to and dreading these "workouts," but am super excited because I set two long-term goals with her.
1) I want to go back to work. I need to, for my own mental well-being. I miss my team, I miss feeling productive, and I miss that sense of normalcy.
2) I want to get back to running. I miss that time to myself, that knowing that I'm doing something I love, and that complete understanding that I'm making my body stronger (and thus, better able to fight off the cancer).
She seems to feel that these are not unreachable, and that with some work, I can reach both! Woot!
There was some sad news this past week. The colon cancer world lost two amazing souls, Gloria and Debbie. I was shocked by both. That's compounded by the fact that there is another shining star in the colon cancer world that is spending her last days on earth with her family and being watched over by hospice. Kathryn was my Imerman Angel, and became a lifeline for me when I needed someone to talk me down from the ledge or walk me through what the doctors were saying. The loss of Glo and Deb, along with the impending loss of Kathryn, has weighed heavily on my mind and on my heart lately. I won't lie - my sorrow and grief are compounded by survivor's guilt. Why them? Why me? I'm trying to use those feelings in a positive way, and reach out to other survivors and help them as those amazing ladies helped me. I hope I can make them all proud.
Let's see...what else? I can't think of much. I *will* try to be better about updating this blog, and keeping better track of how my treatment is going.
Here's to an amazing 2014, for all of us!!!
Anywhoo....Happy New Year! We had a wonderfully calm holiday season....thankfully! Levi had a week off, so spending the time together as a family was just amazing. We haven't been able to do that (while I was feeling good) in a long time.
As I said, the good news is that I am feeling better than I have felt in many moons. I am walking completely upright, and mostly without the walker. (Knocking on wood as I type this....yes, I'm serious.) I am mostly pain-free (thanks to the pain meds), and my mental state is better than it's been in a while.
Christmas was, as I had hoped, epic. The kids were spoiled, thanks to the help of many, many Santa's. If you sent the kids something and I haven't personally thanked you, please know that I am working on thank you notes, and they will be going out this week. Levi had spent many weeks making me a bed...yes, a bed. As in, he took wood and hardware from home improvement stores and made us a bed frame. He didn't think it would be done until January or February, but we ended up setting the bed in our room on Christmas morning. It's just gorgeous....I don't have pictures on me (they are on my facebook page, though), but suffice it to say it's made of poplar and black hardware, giving it a very contemporary, rustic look. He also had to make me a step stool - the bed sits very high (I'm 5'4", and the top of the mattress hits just above my belly button), and I was having issues getting into the bed. He's also working on plans to make us matching bed stands, and is working out the logistics for making us each a dresser.
You'd think the man didn't have to work, but all of this is being done on top of working full-time (this month, he's travelling to California each week!). He's a keeper.
He and I celebrated out 12th wedding anniversary on the 29th; we took the kids to a local zoo and spent the day just enjoying the gorgeous weather (it was in the 70's) and each other. Believe it or not, I was able to walk through the entire zoo, using my walker mostly as a carrier for my purse and only sitting for a few brief moments. When we got to the end of the day and it hit me what I had just done.....I was so damn proud! 2 months ago, I couldn't walk around the inpatient unit of the hospital, and today, I walked around the zoo!
It's like a Christmas miracle.
Chemo seems to be working well. I'm now into cycle two of the Erbitux/Xeloda regimen. I'm tolerating the Xeloda fairly well, although in the past day or two, I'm seeing some slight cracking on the tips of a few fingers. Needless to say, that's not unexpected given the dry conditions in Arizona this time of year. Combine that with the potential for hand/foot syndrome from Xeloda...let's just say my hands have been drenched in various lotions the past few days, and I'm heading to the store to get more thick, butter-style lotions today. Last night, I actually slathered my hands in lotion and slept with moisturizing socks over my hands. They didn't stay on all night, but anything helps, right? :)
As far as the Erbitux goes, the rash is still there. Dr. K put me on a hydrocortisone cream to help combat the redness and swelling, and it's actually helping. Between that (which has a moisturizing quality to it) and the 3 other moisturizers I'm using, I seem to be able to combat the dryness pretty well. Last time, the rash was pretty much isolated to my face. This time, I do have some on my face (especially around my nose/mouth area), but the rash and dryness is also on my shoulders and upper torso. The dryness is particularly bothersome - I'm slathering myself with lotion in the morning, and using ultra-moisturizing soaps/washes in the shower.
I feel like a broken record. Moisturize this, moisturize that....
Anyways, I do have some good news to report. Last Friday, we had a check-up with my team. It was day one of round two of chemo, and I had a lab draw for a CEA check. I didn't sleep the night before, worried about how that was going to turn out.
When the team walked in, Dr. K. was with them. As I was only supposed to meet with Kia (my PA) and care team, I was more than a little worried. What bad news did they have to deliver now?
None. My CEA dropped from 101 back in December to 14.6.
Let me repeat that. My CEA dropped from 101 to 14.6!!!
I was shocked, speechless, and in disbelief. I immediately asked them to rerun the test. There had to be a mistake. There was no way....NO WAY....that my number had dropped that much in a month's time. We chatted some more about how I was feeling, and Dr. K said that he took more stock in the fact that I'm feeling better and better each time I see him than he does in a single data point. But, to be sure, we were rerunning the test to ease everyone's minds.
An hour later, we had our answer. The next CEA level came back at 13.7. 13.7!!!!
I don't know if it's sunk it, even now. My number dropped by 80%, by over 86 points.
Honestly, I'm floored. I think I'm still in shock. I will feel much more confident about it when we get a second CEA back (later this month) with similar numbers. Having another result like that will help me feel much better about trusting those numbers.
Even still, I can tell you.....it feels freaking amazing. Just amazing. It made walking into the infusion room a whole hell of a lot easier, and it makes swallowing the Xeloda a lot easier each day. Maybe....maybe, this is the break I've so desperately needed.
I do still feel like there is always this part in my brain that is waiting. Waiting for the next reaction, waiting for the next blood test to come back negatively, waiting for what lies ahead. I've been through so much over the past 6-7 months, that just freely and completely accepting this good news is very, very difficult to do. I am waiting for the other foot to drop, so to speak.
On that note, I'm still dealing with this new body of mine. It's still my body, but there are times lately when I just don't recognize it. Why?
Well, in the same 6-7 month period, I have lost well over 35 pounds. As a result, I have dropped 4 pant sizes. I had to go jeans shopping this weekend because the clothes I have been wearing are literally falling off of me.
*****This next part is going to be hard to type, and may not make it into the blog post at all...we'll see if I have the courage to post it...*****
All right - I decided to post it. I did promise to be honest on this blog, and I think this is part of that. Don't judge me. Just, please....don't judge me.
I can't even believe I'm going to type this, but here it goes. I was up into a size 16/18 pants, depending on the style. I have been used to shopping in the women's clothes for most of my life - I was always/usually in the smallest sizes there, but it was pretty seldom that I shopped in the ladies or juniors department. I frequented Lane Bryant, Torrid, etc. for clothes, and even then, I didn't always find what I was looking for. I usually fit in between the two departments (almost too small for womens, just a bit too big for ladies).
This weekend, I bought size 12 jeans. Several pairs, some that are going to get returned. I am having to buy smaller tops (sizes medium or large), because my current wardrobe is hanging off of me. I tried on a few size 10 jeans this weekend, and they almost fit.
As I have started dressing this new body with the new clothes, it's almost like I feel like an imposter. I don't know this body I'm in. I wore a new pair of jeans yesterday - they are slim cut, sassy little design on the back pockets, adorable little detailing on the front, and a fun wear pattern on the thighs and calves. Very "in" style. I then tucked my shirt in and wore a belt.
I literally cannot tell you the last time I left the house a) wearing a belt, and b) with a tucked in shirt. I did this yesterday, and walked around, asking my friends at CTCA if I looked okay. They were all amazingly generous with their compliments, and it helped, but I still feel like I don't belong in these clothes. I'm hoping that, as I continue wearing these new smaller sizes and trying out new styles, I'll get more comfortable with it. We'll see. Between the new size clothes, the newly (though extremely cautious) confidence, and the vain concern about how my Erbitux rash is making my face look, I really feel like I'm learning a whole new body.
It's so odd.
I had an evaluation with physical therapy last week. I expressed my concern that my weight loss is solely from muscle loss; she reassured me that this is likely not the case. I'm still able to function in life, meaning I'm able to walk, I have good balance, I can do household chores (grocery shopping, laundry, house cleaning, etc.), and I was able to do a lot of the eval tests without much difficulty. She thinks a lot of my issue is related to endurance, and we need to reteach my heart and lungs to work. I'm simultaneously looking forward to and dreading these "workouts," but am super excited because I set two long-term goals with her.
1) I want to go back to work. I need to, for my own mental well-being. I miss my team, I miss feeling productive, and I miss that sense of normalcy.
2) I want to get back to running. I miss that time to myself, that knowing that I'm doing something I love, and that complete understanding that I'm making my body stronger (and thus, better able to fight off the cancer).
She seems to feel that these are not unreachable, and that with some work, I can reach both! Woot!
There was some sad news this past week. The colon cancer world lost two amazing souls, Gloria and Debbie. I was shocked by both. That's compounded by the fact that there is another shining star in the colon cancer world that is spending her last days on earth with her family and being watched over by hospice. Kathryn was my Imerman Angel, and became a lifeline for me when I needed someone to talk me down from the ledge or walk me through what the doctors were saying. The loss of Glo and Deb, along with the impending loss of Kathryn, has weighed heavily on my mind and on my heart lately. I won't lie - my sorrow and grief are compounded by survivor's guilt. Why them? Why me? I'm trying to use those feelings in a positive way, and reach out to other survivors and help them as those amazing ladies helped me. I hope I can make them all proud.
Let's see...what else? I can't think of much. I *will* try to be better about updating this blog, and keeping better track of how my treatment is going.
Here's to an amazing 2014, for all of us!!!
Comments:
Carol
Pack Urban said...
I
read just to the part about your CEA dropping! FREAKIN WONDERFUL! WOW! WOW!
WOW!!!!!!!!!
January
8, 2014 at 9:38 AM
I've
been following your blog for some time and it's so heartening to hear that you
are feeling good! I so hope it stays that way and that you can enjoy every
moment with your family and friends! Great news!
January
8, 2014 at 5:05 PM
YOU
GO GIRL. A hundred hugs from the east coast. Listen, a million billion people
didn't die today and we are not feeling guilty. There is no rhyme or reason to
this crap. ENJOY!!!!!!!!
January
8, 2014 at 5:48 PM
by
the way, I did not mean to dismiss your sadness and grief for your friends.
Incredibly sad.
January
9, 2014 at 1:43 AM
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