I had my 9th treatment on Friday. Once again, the doctor walked in and said, "I know I say this every time, but man...you still have a lot of hair!"
My tumor continues to shrink--it's at a barely-noticeable range via palpitation. I'm clearly responding quite well to the chemo and the investigative drug. We tried to wean me off of the steroids that I've been given pre-chemo over the last 2 months with disastrous results last week. I felt awful and slept for most of 2 days. The reason behind the wean was because I was starting to gain some weight back. I decided that weight gain was worth the ability to function. So, I'm back to steroids again.
We have officially set up the next round of chemo. I finish this round on January 10th and immediately go into the 2nd round, January 17th. This round is every other Friday for about 2-4 hours (as opposed to 6 hours currently). It also comes with an extra visit to the clinic for a special, White Blood Cell (WBC) count booster shot on Saturdays. This is a $3-10k shot, per shot. Insane! This round is slatted to go through February, unless I have to take some weeks off due to low WBCs. Sometime after that (March-April?), I'll be looking at some kind of surgery.
So, this is what we're looking at, moving into the holidays: I'm continuing to rock-star this cancer thing and we're getting ready to transition to the next round.
I'll try to update again soon.
<3
Sunday, December 22, 2013
Wednesday, December 11, 2013
No news is good news!
I originally started this Thanksgiving weekend, but I don't think this is any less relevant because I suck at updating in a timely manner...
This holiday season, I have a lot to be thankful for--which may at first seem odd. Don't get me wrong. Having cancer remains one of the scariest and most horrible things I've ever faced. But it's also given me some time for reflection and introspection in the face of it all.
1. I'm thankful to be given the opportunity to be with my family. Cancer has made me pause my hectic life and remember what is truly important: my boys, Neil, my family and my friends (family by choice).
2. I'm thankful for my health. This may seem like an odd thing to be thankful for, but truly--I've not been truly sick despite receiving chemo on a weekly basis. Despite having both the stomach flu AND bronchitis in the same week, I've still been able to go to work and take care of myself and my family in a mostly "normal" way.
3. I'm thankful for the fact that I live in a major metropolitan area with access to some of the best and brightest docs in the nation. This means that I don't have to travel hours just to go to my appointments and I have the newest research and medications informing my treatment.
4. I'm thankful to have a "rare"-ish mutation that has been studied and has a pretty awesome treatment protocol! This also allows me to be in this amazing treatment study and be a part of science. :)
5. I'm thankful for the great friends and family that are there for us: by phone, in person, whatever! I've talked with other people who have had cancer and they said they lost a lot of friends in the process of dealing with it all. I'm so grateful to say that our friends and family continue to be there, even when I'm having a particularly "ugly" day. Thanks for letting me fall apart, and helping to pick me back up again.
6. I'm thankful for my amazing husband. Neil is so great about everything. If I have to go to hell, I'm glad he's by my side.
On to the newer info:
I've met with the doctors quite a few times (okay, so weekly). Before my treatment began (end of Sept), I received an ultrasound and MRI to measure my tumor size/density. It was pretty big (5 inches?). After the 3rd treatment (mid-Nov), I was required to go through the process again. In reading the report, we were pretty crestfallen--the size hadn't really shrunk all that much. Not necessarily surprising, given the amount of time that had passed between the two scans (nearly 6 weeks--I have an aggressively growing cancer) but a bummer none-the-less.
We met with the doctor after the 5th treatment. We discussed our disappointment at which point he replied--"Oh, this is a case where a picture is worth a thousand words" and proceeded to pull up both scans. I wish I had a copy to share; the results are startling. In the initial report, my tumors were lit up, bright white against the stark, black background of the MRI. In the subsequent report, my main tumor was a faded gray--still the same "size" but lacking all the density that was initially seen. The one in my lymph node had reduced in half! Incredible results for only 3 treatments!
Last week was the 7th treatment. The doc walked in and exclaimed--"You have a lot more hair than I thought you'd have..." Apparently I'm only one of two people (and the only woman) to have hair at this stage of this protocol. Way to be an outlier! He also informed me that for the first time, he can't feel the tumor in my lymph node and that my main tumor is significantly less dense than it has been.
So, better late than never! All this wonderful news in one big update. I think about updating you all, all the time--it's hard when the computer is in the frigid office and even getting time to sit down at a computer is a rarity.
Much love to you all,
Mary
This holiday season, I have a lot to be thankful for--which may at first seem odd. Don't get me wrong. Having cancer remains one of the scariest and most horrible things I've ever faced. But it's also given me some time for reflection and introspection in the face of it all.
1. I'm thankful to be given the opportunity to be with my family. Cancer has made me pause my hectic life and remember what is truly important: my boys, Neil, my family and my friends (family by choice).
2. I'm thankful for my health. This may seem like an odd thing to be thankful for, but truly--I've not been truly sick despite receiving chemo on a weekly basis. Despite having both the stomach flu AND bronchitis in the same week, I've still been able to go to work and take care of myself and my family in a mostly "normal" way.
3. I'm thankful for the fact that I live in a major metropolitan area with access to some of the best and brightest docs in the nation. This means that I don't have to travel hours just to go to my appointments and I have the newest research and medications informing my treatment.
4. I'm thankful to have a "rare"-ish mutation that has been studied and has a pretty awesome treatment protocol! This also allows me to be in this amazing treatment study and be a part of science. :)
5. I'm thankful for the great friends and family that are there for us: by phone, in person, whatever! I've talked with other people who have had cancer and they said they lost a lot of friends in the process of dealing with it all. I'm so grateful to say that our friends and family continue to be there, even when I'm having a particularly "ugly" day. Thanks for letting me fall apart, and helping to pick me back up again.
6. I'm thankful for my amazing husband. Neil is so great about everything. If I have to go to hell, I'm glad he's by my side.
On to the newer info:
I've met with the doctors quite a few times (okay, so weekly). Before my treatment began (end of Sept), I received an ultrasound and MRI to measure my tumor size/density. It was pretty big (5 inches?). After the 3rd treatment (mid-Nov), I was required to go through the process again. In reading the report, we were pretty crestfallen--the size hadn't really shrunk all that much. Not necessarily surprising, given the amount of time that had passed between the two scans (nearly 6 weeks--I have an aggressively growing cancer) but a bummer none-the-less.
We met with the doctor after the 5th treatment. We discussed our disappointment at which point he replied--"Oh, this is a case where a picture is worth a thousand words" and proceeded to pull up both scans. I wish I had a copy to share; the results are startling. In the initial report, my tumors were lit up, bright white against the stark, black background of the MRI. In the subsequent report, my main tumor was a faded gray--still the same "size" but lacking all the density that was initially seen. The one in my lymph node had reduced in half! Incredible results for only 3 treatments!
Last week was the 7th treatment. The doc walked in and exclaimed--"You have a lot more hair than I thought you'd have..." Apparently I'm only one of two people (and the only woman) to have hair at this stage of this protocol. Way to be an outlier! He also informed me that for the first time, he can't feel the tumor in my lymph node and that my main tumor is significantly less dense than it has been.
So, better late than never! All this wonderful news in one big update. I think about updating you all, all the time--it's hard when the computer is in the frigid office and even getting time to sit down at a computer is a rarity.
Much love to you all,
Mary
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