Well, the
port's in. I was able to convince the dr (well, all I had to do was ask)
if we could put the port in on the left side, so as not to ruin my tattoo on
the other port scar. She was immediately ok with it, then proceeded to
show me her Ironman tattoo on her left calf. Cool! It was fun to
talk with her about something completely unrelated to what's going on, and to
hear her enthusiasm. And, Dad and I both recognized her - she's the dr
who took my port out back in 2009.
I was totally ok yesterday, until we (Mom, Dad and I) started walking into the hospital. That's when reality hit, and I started tearing up. Knowing that this was the beginning of this all kind of hit me. I never wanted to have to go through this, even though in my heart, I think I knew that it would come back some day. I don't know why - maybe I was mentally preparing myself for the worst? (I tend to do that - have since I was a kid.) Mom and Dad took each hand, and helped me get through it before we got to admissions. At the admission desk, they handed me a call beeper, like you get at a restaurant. The lady there commented on my nails (now sparkly blue), and I said that I may have to fight this again, but I'm going to do it looking damn good. :) And, I will.
After getting the admissions paperwork done, we headed into intake, and they started the long process of getting my vitals done, getting the IV put in (blech), and doing all the routine stuff. I will say, the drs and nursing staff at this hospital are just wonderful. I've been at this place more than I care to admit, and they have been really good to work with. They made sure I was comfortable, that we didn't need anything, etc. And, more importantly, they talked with us about what's happening, why they use the PowerPort, showed us how it works, let me access the port on a sample one, etc. It was much more in-depth than I remember, but in a good way. Perhaps I just remember it more.
They took me into the OR (is that the right term?) for the placement. It's always cold in there, but they gave me warm blankets to stop the shivering. I don't know if I can describe the room to you - there are a lot of technical pieces of equipment, including an ultrasound machine, which allows them to accurately find and thread the catheter through the veins into my heart. The port they put in is called a Power Port (pictures and more information here and here).
I was totally ok yesterday, until we (Mom, Dad and I) started walking into the hospital. That's when reality hit, and I started tearing up. Knowing that this was the beginning of this all kind of hit me. I never wanted to have to go through this, even though in my heart, I think I knew that it would come back some day. I don't know why - maybe I was mentally preparing myself for the worst? (I tend to do that - have since I was a kid.) Mom and Dad took each hand, and helped me get through it before we got to admissions. At the admission desk, they handed me a call beeper, like you get at a restaurant. The lady there commented on my nails (now sparkly blue), and I said that I may have to fight this again, but I'm going to do it looking damn good. :) And, I will.
After getting the admissions paperwork done, we headed into intake, and they started the long process of getting my vitals done, getting the IV put in (blech), and doing all the routine stuff. I will say, the drs and nursing staff at this hospital are just wonderful. I've been at this place more than I care to admit, and they have been really good to work with. They made sure I was comfortable, that we didn't need anything, etc. And, more importantly, they talked with us about what's happening, why they use the PowerPort, showed us how it works, let me access the port on a sample one, etc. It was much more in-depth than I remember, but in a good way. Perhaps I just remember it more.
They took me into the OR (is that the right term?) for the placement. It's always cold in there, but they gave me warm blankets to stop the shivering. I don't know if I can describe the room to you - there are a lot of technical pieces of equipment, including an ultrasound machine, which allows them to accurately find and thread the catheter through the veins into my heart. The port they put in is called a Power Port (pictures and more information here and here).
Because the surgery is pretty topical, I don't need rx pain meds. I was back in the recovery room for about 15 minutes. They gave me water and a fruit tray to snack on, which was awesome. Then, about an hour later, I was in a wheelchair, being shuttled to my parents' car and being taken home. Start to finish - about 5 hours.
This morning, the areas around the port are tender. The port itself is fairly think (maybe 3/4"), so the skin around it is tender from being stretched. Plus, they cut me open. Skin tends to not like that. And, my back is bothering me, probably from lying in the hospital bed and on the hard, long, straight OR table. I'm hoping my back doesn't start to tweak today while I'm in the chemo chair. We'll see. Need to set up an appointment with my chiro. Need to put that in a note NOT in the blog.
Today, when they go to access the port (which is the term for when they *use* the port), they will insert a very large needle into the port (hopefully, after they numb the area), bandage me up to make sure it stays in place for three days, and then start the process. I'll try to update more later today or tomorrow morning, and let you know. I know for sure that they will draw blood to do my cbc (complete blood count), then administer the Avastin and Folfiri. What those are going to do to me are a mystery, but I trust my nurses and know that they will do everything in their power to make sure that I don't get sick.
Thanks again for the love and support. It definitely helped me get through yesterday, and it will absolutely be needed today.
Comments:
Tina said...
Hope
you are not too sore today. Remember to ask for a prescription for Emla cream!
Also remind your nurses how well Emend(?) worked for you so you can get it right away. Knowing what worked for you last time will help avoid problems this time! You are the one who first told me about Emend--what a wonder drug that is for nausea!
When I had to go back to the chemo room for my 2nd dx, I started taking ativan before I went because I would start to panic on the drive there. The nurses told me that is a common reaction and go ahead and take the ativan (also helps with nausea!) After receiving prayer at church, I never needed it again, but it was nice to know it helped if I needed it.
I'll admit it will be tough for me to read some of the things you are going through (esp. the part about the pump!), but I will be here for you supporting you all the way.
Now go kick some cancer butt!!
Also remind your nurses how well Emend(?) worked for you so you can get it right away. Knowing what worked for you last time will help avoid problems this time! You are the one who first told me about Emend--what a wonder drug that is for nausea!
When I had to go back to the chemo room for my 2nd dx, I started taking ativan before I went because I would start to panic on the drive there. The nurses told me that is a common reaction and go ahead and take the ativan (also helps with nausea!) After receiving prayer at church, I never needed it again, but it was nice to know it helped if I needed it.
I'll admit it will be tough for me to read some of the things you are going through (esp. the part about the pump!), but I will be here for you supporting you all the way.
Now go kick some cancer butt!!
March
27, 2012 at 6:46 AM
I've
been MIA from the blogosphere and just getting caught up. So sad to hear you've
got to kick cancer's ass again. Sending good vibes your way and know you are in
my thoughts.
March
27, 2012 at 7:12 AM
I've
been thinking about you all day today. I've been praying and my mother's Bible
study group was also praying for you today.
March
27, 2012 at 3:34 PM
Later:
So, day
one is down. Well, sort of. It's about 3:45 local time. Right
now, I'm not feeling great. I was nauseous this morning almost from the
moment I woke up. I imagine that is part anticipation, part left-over
meds from yesterday, and legitimate nausea from the chemo.
Rambling from here on out:
I know that my own memories are tainting this round. I'm remembering (consciously and non-consciously) things from last time. Every sound, touch, taste, smell, experience is a reminder. Walking across the threshold from the waiting room into the chemo room was, exactly as I expected, horrific. I felt like I was walking through a really long hallway - it couldn't have been more than 15 feet. I felt like it was the beginning of the end - it's not; it's the beginning of the end of this cancer. Walking into the room itself was the hardest. Just seeing the purple chairs lined up, empty, as if they were waiting for me.
My parents and Lisa, the AMAZING chemo nurse, got me through accessing the port. I can tell you that the whole process is pretty much a blur, like pieces of a puzzle sitting on a table, waiting to tell a story. My story.
I remember picking a chair, at the end of the row along the wall. I don't know why I picked that one. Anyways, I sat down and just blanked out. I wasn't sure what to do - it was very surreal being there. I was worried about the port being accessed. I was worried about being sick, since I still felt nauseous. I was worried about how I would feel. The smell of the office wasn't helping. It's a smell that sticks with you.
Okay, so they access port, and pull cbc's (complete blood counts), to make sure I can get chemo. They didn't need to do it, since they did the same thing yesterday for the port placement. I think that it was a matter of giving me the time and space to come to grips with everything.
Accessing the port didn't hurt. Lisa numbed me up good, and I didn't feel the needle go in. I can tell you, I tasted the saline. Blech - dirty sweaty sock taste. Very fun. Thank God for mints.
First bag of drugs were pre-meds - aloxi, decadron,Ativan, and Emend. All good things. I had her only give me half a dose of Ativan, and the other half just before I left. After we got those in, the Leucovorin andCamptosar. Then, once those were done, the chemo nurse administered a push of 5-FU (into my port), then sent me home with my chemo pump. All in all, it took about 3 hours. By the time we headed home, stopped at Walgreen's to pick up the meds, and grabbed a sandwich, we made it back to our house and I rested up. Mom and Dad left shortly thereafter, and I rested. I'm feeling - ok. Not great. Still a bit nauseous, but I just took a Compazine, which should help. I also have Ativan to take if I need it - trying to hold off, even though that works, b/c I'm waiting for the kids to get here. Ativan makes me tired. :)
The good news is that I don't have to go into the office tomorrow. Last time, each cycle was three days in the office. This time, first day is about 3 hours in the office. Then I go home with my iPump (still need a better name - any suggestions?) until Thursday. Thursday's appointment will start at 8:30am, and should be less than 2 hours. My first round of Avastin is 90 minutes, then I'm disconnected and FREE for two weeks. Next cycle, the Avastin is an hour, then subsequent appointments are 35 minutes. Not too bad at all, in the overall scheme of things.
I'll probably start getting my Neulasta shot next cycle. They expect my white blood counts to go down pretty quickly, so I'll need to watch who I'm around and what I expose myself too. But, for now, I'm okay.
As I'm sitting there, the sound of my pump pushing the 5-FU to me makes me nauseous. The Compazine seems to be helping, as did Mom and Dad arriving with the kids. Stories about drama at 4th grade recess are the best medicine against nausea.
Smells are bothering me right now. All of my senses are heightened, but I'm definitely more sensitive to smells. My son is sitting next to me right now, and all I can smell is kindergarten boy. I don't mind that too much. Means he's having fun. :)
I think that's about it, especially now that the kids are here. Thanks for your help in getting me through this first, emotionally difficult day. Together, and only together, can we beat this thing.
Rambling from here on out:
I know that my own memories are tainting this round. I'm remembering (consciously and non-consciously) things from last time. Every sound, touch, taste, smell, experience is a reminder. Walking across the threshold from the waiting room into the chemo room was, exactly as I expected, horrific. I felt like I was walking through a really long hallway - it couldn't have been more than 15 feet. I felt like it was the beginning of the end - it's not; it's the beginning of the end of this cancer. Walking into the room itself was the hardest. Just seeing the purple chairs lined up, empty, as if they were waiting for me.
My parents and Lisa, the AMAZING chemo nurse, got me through accessing the port. I can tell you that the whole process is pretty much a blur, like pieces of a puzzle sitting on a table, waiting to tell a story. My story.
I remember picking a chair, at the end of the row along the wall. I don't know why I picked that one. Anyways, I sat down and just blanked out. I wasn't sure what to do - it was very surreal being there. I was worried about the port being accessed. I was worried about being sick, since I still felt nauseous. I was worried about how I would feel. The smell of the office wasn't helping. It's a smell that sticks with you.
Okay, so they access port, and pull cbc's (complete blood counts), to make sure I can get chemo. They didn't need to do it, since they did the same thing yesterday for the port placement. I think that it was a matter of giving me the time and space to come to grips with everything.
Accessing the port didn't hurt. Lisa numbed me up good, and I didn't feel the needle go in. I can tell you, I tasted the saline. Blech - dirty sweaty sock taste. Very fun. Thank God for mints.
First bag of drugs were pre-meds - aloxi, decadron,Ativan, and Emend. All good things. I had her only give me half a dose of Ativan, and the other half just before I left. After we got those in, the Leucovorin andCamptosar. Then, once those were done, the chemo nurse administered a push of 5-FU (into my port), then sent me home with my chemo pump. All in all, it took about 3 hours. By the time we headed home, stopped at Walgreen's to pick up the meds, and grabbed a sandwich, we made it back to our house and I rested up. Mom and Dad left shortly thereafter, and I rested. I'm feeling - ok. Not great. Still a bit nauseous, but I just took a Compazine, which should help. I also have Ativan to take if I need it - trying to hold off, even though that works, b/c I'm waiting for the kids to get here. Ativan makes me tired. :)
The good news is that I don't have to go into the office tomorrow. Last time, each cycle was three days in the office. This time, first day is about 3 hours in the office. Then I go home with my iPump (still need a better name - any suggestions?) until Thursday. Thursday's appointment will start at 8:30am, and should be less than 2 hours. My first round of Avastin is 90 minutes, then I'm disconnected and FREE for two weeks. Next cycle, the Avastin is an hour, then subsequent appointments are 35 minutes. Not too bad at all, in the overall scheme of things.
I'll probably start getting my Neulasta shot next cycle. They expect my white blood counts to go down pretty quickly, so I'll need to watch who I'm around and what I expose myself too. But, for now, I'm okay.
As I'm sitting there, the sound of my pump pushing the 5-FU to me makes me nauseous. The Compazine seems to be helping, as did Mom and Dad arriving with the kids. Stories about drama at 4th grade recess are the best medicine against nausea.
Smells are bothering me right now. All of my senses are heightened, but I'm definitely more sensitive to smells. My son is sitting next to me right now, and all I can smell is kindergarten boy. I don't mind that too much. Means he's having fun. :)
I think that's about it, especially now that the kids are here. Thanks for your help in getting me through this first, emotionally difficult day. Together, and only together, can we beat this thing.
Comments:
Tina said...
Reading
what you went through today, I can smell it and I can taste it. I always plug
my nose when they flush my port. This keeps me from tasting it--the taste makes
me nauseous! Other people smell tea bags or something, but plugging my nose has
always worked for me.
Glad you are done with your first day. Kids definitely help! I remember thinking I was too sick, or too tired to visit with my girls--but then they'd all come plop on my bed and I ended up feeling so much better. What a blessing our children are!
Hope the steroids don't keep you awake all night!
Glad you are done with your first day. Kids definitely help! I remember thinking I was too sick, or too tired to visit with my girls--but then they'd all come plop on my bed and I ended up feeling so much better. What a blessing our children are!
Hope the steroids don't keep you awake all night!
March
27, 2012 at 6:51 PM
chaoticfamily said...
Hope
the first round goes well.
Erinne
Erinne
March
27, 2012 at 7:44 PM
You
got it right - the beginning of the end of this cancer. Now you got me thinking
of another name for the Ipump (we call it "Mom's waterbottle" cuz it
kinda looks like one). But we need something catchier. Hmmmm. Wishing you heaps
of rest and calm
March
28, 2012 at 5:15 AM
I
can't believe that I forgot about the fanny pack! You may not need the
Neulasta. My blood counts never went down on Folfiri like it did with Folfox. I
never had any of the side effects they expected me to except for hair loss. It
came out in clumps and was extremely thin but never lost all of it. I was so
happy not to have nausea like with Oxaliplatin!
March
28, 2012 at 8:08 AM
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