This post
will likely be rambling, and I apologize. But, you'll manage.
:)
*****************************************
Well, as you hopefully have already seen, yesterday went well. When the doctor came in the room at the med-on appointment, he was smiling. And, I knew we were ok.
The long day started with the CT scan....which, I didn't realize, was a full-body scan. For the past three weeks, I thought that the scan would just be the lungs, like it was back in June. Because I thought this was lungs-only, I didn't understand that I had to cease eating/drinking an hour prior to the testing, or that I would have to drink the contrast. Luckily, the contrast was not barium; it looked and tasted like water, which was nice!
And, while I was waiting for the contrast-drinking to start, the nurse that accessed my port screwed up. I don't think she accesses ports regularly, so she wasn't familiar with the process, which didn't help my anxiety level at all. Then, she couldn't get blood return from the port, so she had to do pull my labwork blood from my arm. *sigh* And, to top it all off, she didn't pull enough blood (she only drew two vials)....this was in spite of the fact that I asked her several times. Every time we've gone in, they have pulled four vials of blood. She only pulled two.
Anyways, the CT scan itself went without a hitch. The contrast caused some nausea and other intestinal issues (which I'll spare you from detailing), but it was pretty easy other than that.
Leah, one of the awesome ladies on the PR staff, asked me if I would be interested in being in some pictures for the new collage (I think) in the expanded outpatient clinic waiting room. (CTCA is expanding their outpatient clinic by, I believe, 22,000 SF!) So, just before my massage, Leah and I headed into the radiation room and snapped some shots. Here's a few....
*****************************************
Well, as you hopefully have already seen, yesterday went well. When the doctor came in the room at the med-on appointment, he was smiling. And, I knew we were ok.
The long day started with the CT scan....which, I didn't realize, was a full-body scan. For the past three weeks, I thought that the scan would just be the lungs, like it was back in June. Because I thought this was lungs-only, I didn't understand that I had to cease eating/drinking an hour prior to the testing, or that I would have to drink the contrast. Luckily, the contrast was not barium; it looked and tasted like water, which was nice!
And, while I was waiting for the contrast-drinking to start, the nurse that accessed my port screwed up. I don't think she accesses ports regularly, so she wasn't familiar with the process, which didn't help my anxiety level at all. Then, she couldn't get blood return from the port, so she had to do pull my labwork blood from my arm. *sigh* And, to top it all off, she didn't pull enough blood (she only drew two vials)....this was in spite of the fact that I asked her several times. Every time we've gone in, they have pulled four vials of blood. She only pulled two.
Anyways, the CT scan itself went without a hitch. The contrast caused some nausea and other intestinal issues (which I'll spare you from detailing), but it was pretty easy other than that.
Leah, one of the awesome ladies on the PR staff, asked me if I would be interested in being in some pictures for the new collage (I think) in the expanded outpatient clinic waiting room. (CTCA is expanding their outpatient clinic by, I believe, 22,000 SF!) So, just before my massage, Leah and I headed into the radiation room and snapped some shots. Here's a few....
The
murals painted on the walls as you walk into the radiation rooms are stunning
works of art.
Floor to
ceiling, wall to wall....just breathtaking.
I really
like this one...the monkey makes me laugh.
The
orange thing you see? That's my port access.
After my massage with the amazing Pat, Dad and I met Mom and Lisa for lunch, then headed to the med-onc appointment. I was fairly nervous, but confident. Until we walked back there. Then, I wasn't so sure.
I think all of the preparation I did helped me be more calm, but the fact of the matter is, so much was riding on this test, and on the results. We were waiting to find out if the last 6 months of chemo worked, if I would shift to oral chemo, and if I would be able to go back to work full-time when my short-term disability ends next month.
And, remember the nurse that only took two vials of blood? Yeah - the med-onc appointment started out with the pod nurse (who works with my team) telling me that they had to pull more blood. And, since my port wasn't giving any blood back, they had to poke my arm. Again. Damn it.
I told them they could only poke me again if they waited until we got the results from Dr. Granick about the CT scan; I wasn't willing to wait on the bloodwork. So, Dr. Granick and team came in, and the smile on his face was enough. I knew we were ok. That didn't mean that I didn't ask a lot of questions, because I did. But, the gist of it is this...
First, we didn't do a PET scan, so we don't know (for sure) if what we are seeing is cancer or not. The reason we didn't do a PET is because chemo interferes with the results, and can throw false positives (which we definitely do not need). So, this scan was a CT, and only showed us the size of the things we were looking for, as well as looking for anything new.
The lymph nodes in my upper left abdomen are back in normal range. They have shrunk, and this is a good thing. Again, there is no way to determine if there is still active cancer in those nodes, but we are happy about the fact that they have gotten smaller.
And, the tumors in my lungs are stable. I was, honestly, hoping that they would be gone, but they aren't. However, there is no way of telling if what we are seeing on the scan is active tumors or scar tissue left over from what we killed with chemo. (I'm going with the latter....makes me feel better.)
Here's what the actual CT report says:
- Stable 1-2mm multiple bilateral pulmonary nodules suggest followup CT in 4 to 6 months to establish stability. (Basically, this means that the tumors - which were 2-4mm at rediagnosis in March - are down to 1-2mm and have remained stable since the last CT scan in June. We will rescan in 4-6 months to confirm stability, assuming CEA remains stable.)
- Nonspecific subcentimeter retroperitoneal lymph nodes. (Translation, as best I can figure - the lymph nodes in my upper right abdomen are non-specific, meaning there's no way to see if there's cancer there, and are all under 1 cm in size.)
- No convincing evidence for hepatic, adrenal or osseous metastasis. (There are no metastasis visible in the liver, kidneys or bones.)
And, I'm ok with all of this.
Based on these results, Dr. Granick decided to forego IV chemo yesterday (w00t!) and start me on Xeloda today. I was very happy about this; no chemo and I get my weekend back? Yes, please!
There were a lot of other questions asked, and answered. The biggest one is, how do we determine remission. Unfortunately, remission may not be possible in the traditional sense. Because of the fact that my lung tumors are non-specific, there is no way to determine if I am NED (no evidence or disease). And, NED is one of the goals to get to remission.
I was pretty bummed when I heard this. But, the PA reminded me that, in some cases, remission is a state of mind. Her mother has been on maintenance chemo for 7 years (I want to say she does chemo every few weeks or something like that), but is not NED....but, she considers herself in remission. The PA, Kia, said that remission is what you make of it.
So, as of right now, assuming I handle the Xeloda well, I'll consider myself in remission. If the CEA stays stable for a while, and I'm able to tolerate the oral chemo, I will be, in my opinion, in remission.
Oh, hell yeah!
So, for today, the gameplan is Xeloda for a while. Right now, I'm on (2) 500mg pills twice a day, at breakfast and dinner. I need to take them with food, to cut down on the nausea, and I need to watch my hands and feet. One of the side effects that is most common is hand and foot syndrome, which usually consists of red, hot hands, and a burning sensation. So, I'm keeping track of that. Basically, I need to drink lots of water, and make sure I'm keeping my hands and feet well moisturized. The reason the hand/foot syndrome is to prevalent is that they think the chemo is released by the body through the skin on the palms of the hands and the soles of the feet. The preventative measures should help, including walking at least 30 minutes each day. This is not a bad thing...
We will continue to monitor my CEA. Dr. Granick will make a determination, based on CEA levels and how I tolerate the current dosage, on whether to maintain this dosage or to increase it. Here's hoping we can maintain for a while...
What else? I think that's about it. I know there was more, but it's almost bedtime. Overall, yesterday was a good day. We got some really great news....while it wasn't what I wanted, it was probably the best news we could have gotten.
What did I miss? Do you guys have any questions? OH - apparently, the news interview aired last night. I didn't get to see it, as I was in bed already. As soon as I have a link to the website, I will let you know. And, I'm hoping that CTCA will burn me a copy....I promise to let y'all know.
Meantime, let's celebrate, my army! We won this battle....the war is still being fought, but we'll take this. Oh yes...we will take this!
Comments:
Tina said...
Overall
it's great news, Michelle! Hope the Xeloda isn't too hard on you. If I remember
right, that's the stuff that turns into 5FU in your body--or is somehow similar
to it. It's still chemo, but shouldn't be as bad as the other stuff you've been
taking! I'm sure you'll do fine on it, and you have a great team to help with
any side effects.
Enjoy your weekend!!
Enjoy your weekend!!
September
29, 2012 at 7:34 AM
Yea
yea yea and oh did I say YEA! Like I said a few months ago, unlike my aunt's re-diagnosis
with breast cancer almost ten years ago, I don't have the same feelings with
your situation. Her's was "how much time can she 'buy' with
treatment". Your's.... "how long will it take to get things back to
normal" :-) So excited with the news.... enjoy this wonderful weekend!
September
29, 2012 at 1:18 PM
I
was on Xeloda 3000mg dosage; three 500mg pills twice a day, if I remember
correctly. Keep a notebook reminder for when you took your meds and log in what
you've had to eat and drink and the times!!!!! You are awesome!
September
30, 2012 at 12:20 PM
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