Guess I'm going to find out what we're going to do without a port today.
I know the oncology nurses are the best at finding veins, but can they really find even mine?
Hmmmm.
First step, draw blood work. Second poke and we have venous access for blood work and an IV started. Hooray! Not bad at all.
I wait about twenty minutes when Breanna announces she has terrible news for me. Oh no! Now what? Oh this one is easy. My blood hemolyzed (cells broke apart) so they need to poke a fresh vein and try to draw blood with cells that will stay together.
One stick later and one vial later, we're in business again. Hooray for exceptionally talented nurses who aren't afraid of being around what-sometimes-feels-like-we're-radioactive patients!
Apparently, there's a nation-wide shortage of IV Benadryl, so we get to skip that step entirely. Cool. No loopy sleep time for me today.
They hang Zofran, then Emend (both anti-nausea medications), and finish with Adcetris.
This is actually seeming easy today. Yahoo!
Purple Everywhere
Daily Herald picture
Wednesday, October 31, 2012
Monday, October 22, 2012
Bye Bye Port
There's something wrong with my port. It's oozing blood and yucky stuff--even after being on a strong dose of antibiotics for ten days. I don't know what I was thinking would happen; I just knew that something needed to change.
So into Dr. Wendy's I go and back to the nurses station. They're immediately concerned also, and involve Dr. Wendy. Her response after one two-second glance? "Okay. That's infected. I can't do anything with an infected port. Time to rip that one out."
Out? But I need my port. My veins have always been horrible before; now they're downright nonexistent. What now?
I'm whisked off to Timpanogos Regional Hospital once again. Yup, it's me. I'm back. It's the same nursing staff that was there about ten weeks ago when the port was originally placed. And they remember me.
It is NOT a good thing to be this well known in local medical circles!
"So we're taking it out already?"
"Yup. It got infected."
"Darn. That doesn't happen often."
"Leave it to my body."
"Still don't want any sedation?"
"Right!"
"Okay. Here we go."
A short thirty minutes later, no more port. I'm actually kind of sad because I know how much it helped to have it. Now I'm not sure what we're going to do with chemo. This could be interesting.
So into Dr. Wendy's I go and back to the nurses station. They're immediately concerned also, and involve Dr. Wendy. Her response after one two-second glance? "Okay. That's infected. I can't do anything with an infected port. Time to rip that one out."
Out? But I need my port. My veins have always been horrible before; now they're downright nonexistent. What now?
I'm whisked off to Timpanogos Regional Hospital once again. Yup, it's me. I'm back. It's the same nursing staff that was there about ten weeks ago when the port was originally placed. And they remember me.
It is NOT a good thing to be this well known in local medical circles!
"So we're taking it out already?"
"Yup. It got infected."
"Darn. That doesn't happen often."
"Leave it to my body."
"Still don't want any sedation?"
"Right!"
"Okay. Here we go."
A short thirty minutes later, no more port. I'm actually kind of sad because I know how much it helped to have it. Now I'm not sure what we're going to do with chemo. This could be interesting.
Sunday, October 21, 2012
Cyclical Chemo
I've had five different regimens of chemo so far: MOPP at 7 years old, ADV at 40 years old, ICE and BEAM about a year ago at 42 years old, and now Adcetris at 44 years old.
With each regimen, you're told that the side effects of chemo are very cyclical. You get one dose and it starts working immediately. However, it takes a while for it to do its worst damage, so about 10 days after treatment is when your blood cell counts are supposed to be at their worst. That time period is called the nadir, or low point. Then, your body starts rebuilding and healing from the chemo, which usually takes about 10 days--just in time for your next dose.
So I've heard the cycle repeated over and over to me throughout the years while dealing with Hodgkins. But I've never felt it or even really noticed it as much as I do with Adcetris.
Day 1, Chemo day. I'm feeling pretty good: good energy, not so much pain, not nauseated. Overall, pretty good. Immediately, I notice more neuropathy (tingling in the tips of my hands) and the metallic taste in my mouth is back.
Days 2-8, Dropping down. Still have good energy, not so much pain, but the nausea is really picking up. Maybe I should think about switching medicines again. I'm starting to itch in strange places also, but it's not the frantic, insane itching that's coming.
Days 9-12, Low point. So tired. It hit today, suddenly, from my last dose (day 10). I fell asleep on the couch, sitting up, while watching TV. Weird! Abruptly, I'm feeling way more bone pain than usual also. It's a deep pain that's in the middle of my bones and attacks everything from my forearms and hands, to my shoulders, to my hips, legs, and feet. If it gets really bad, the pain start pulsing. With every heartbeat, I can feel the pain in every area simultaneously. Not fun! Nothing sounds good to eat. Even the taste in my mouth is enough to make me violently nauseous sometimes. Plus, I itch in random places. It's not like a lotion applied to my skin will help. This is a deep itch--that's coming from the inside out. I can take two Benadryl when it gets to the driving-me-absolutely-insane stage, and that helps somewhat. These are the days when it's hard to honestly answer the question "How are you doing," no matter how genuinely it's asked.
Days 13-16, Building up. Can pretty much eat anything I want without feeling nauseous, but the weird taste still lingers. I can accomplish a few tasks like cooking or cleaning a room without needing a nap afterward. And the pain is receding to a dull, constant ache in the background again.
Days 17-20, Back up. I'm feeling pretty good again. Good energy, not so much pain, metallic taste is gone. Yay. Must be time for another dose on day 21.
With each regimen, you're told that the side effects of chemo are very cyclical. You get one dose and it starts working immediately. However, it takes a while for it to do its worst damage, so about 10 days after treatment is when your blood cell counts are supposed to be at their worst. That time period is called the nadir, or low point. Then, your body starts rebuilding and healing from the chemo, which usually takes about 10 days--just in time for your next dose.
So I've heard the cycle repeated over and over to me throughout the years while dealing with Hodgkins. But I've never felt it or even really noticed it as much as I do with Adcetris.
Day 1, Chemo day. I'm feeling pretty good: good energy, not so much pain, not nauseated. Overall, pretty good. Immediately, I notice more neuropathy (tingling in the tips of my hands) and the metallic taste in my mouth is back.
Days 2-8, Dropping down. Still have good energy, not so much pain, but the nausea is really picking up. Maybe I should think about switching medicines again. I'm starting to itch in strange places also, but it's not the frantic, insane itching that's coming.
Days 9-12, Low point. So tired. It hit today, suddenly, from my last dose (day 10). I fell asleep on the couch, sitting up, while watching TV. Weird! Abruptly, I'm feeling way more bone pain than usual also. It's a deep pain that's in the middle of my bones and attacks everything from my forearms and hands, to my shoulders, to my hips, legs, and feet. If it gets really bad, the pain start pulsing. With every heartbeat, I can feel the pain in every area simultaneously. Not fun! Nothing sounds good to eat. Even the taste in my mouth is enough to make me violently nauseous sometimes. Plus, I itch in random places. It's not like a lotion applied to my skin will help. This is a deep itch--that's coming from the inside out. I can take two Benadryl when it gets to the driving-me-absolutely-insane stage, and that helps somewhat. These are the days when it's hard to honestly answer the question "How are you doing," no matter how genuinely it's asked.
Days 13-16, Building up. Can pretty much eat anything I want without feeling nauseous, but the weird taste still lingers. I can accomplish a few tasks like cooking or cleaning a room without needing a nap afterward. And the pain is receding to a dull, constant ache in the background again.
Days 17-20, Back up. I'm feeling pretty good again. Good energy, not so much pain, metallic taste is gone. Yay. Must be time for another dose on day 21.
Wednesday, October 10, 2012
Third Dose and CT Scans
It's Friday, October 5 and time for CT scans to see what affect the chemo has had after two doses. The CT goes pretty smoothly (besides having to drink TWO containers of that ghastly, chalky contrast material), so now it's just a wait until Wednesday when I'll find out the results.
Wednesday, October 10 comes and time for another appointment with Dr. Wendy. Whoops! No one told me she was out of town, so I'm meeting with another oncologist. Now, I feel like I'm the teacher and not the patient.
This doctor has never known anyone that's used Adcetris and wants me to fill her in on all of its subtleties and complexities. Wow!
After being grilled for about twenty minutes, she tells me the chemo is having some affect on the cancer, but she can't really say how much. It almost seems like she's so interested in hearing about Adcetris that she doesn't have time to tell me about how much it's helping. Oh well. I can get my own printout and read about the CT results.
Time for my third dose of chemo. While I'm waiting, I read the CT results.
In one place, it says that the largest tumor shrank from 37mm in length to 27mm in length. That's not a bad reduction. But I'm confused because the summary statement says that the same tumor shrank from 30mm to 27mm. That's not very much at all. Which one is accurate? The width shrunk only from 20mm to 16mm, so it's probably the second measurement. And none of the other tumors showed any reductions. Crud!
So which part of this treatment will "exceed all expectations"? If it's not the side effects and it's not the number of doses I'll need, what is it? I'm banking on that this chemo will keep the cancer away longer then the other treatments have. Okay. I can live with that!
When I go back the next day for my Neulasta shot, Paula (one of the nurses that's been there through all three of the past occurrences with me) looks up the original PET scan for me to see what size it reported. The largest tumor was 38mm x 20mm, so the reduction is better than I originally thought. 38-37mm down to 27mm is about a 25% reduction. Not bad. Just not gone yet and lots more doses to look forward to.
Comme si, comme ca.
Wednesday, October 10 comes and time for another appointment with Dr. Wendy. Whoops! No one told me she was out of town, so I'm meeting with another oncologist. Now, I feel like I'm the teacher and not the patient.
This doctor has never known anyone that's used Adcetris and wants me to fill her in on all of its subtleties and complexities. Wow!
After being grilled for about twenty minutes, she tells me the chemo is having some affect on the cancer, but she can't really say how much. It almost seems like she's so interested in hearing about Adcetris that she doesn't have time to tell me about how much it's helping. Oh well. I can get my own printout and read about the CT results.
Time for my third dose of chemo. While I'm waiting, I read the CT results.
In one place, it says that the largest tumor shrank from 37mm in length to 27mm in length. That's not a bad reduction. But I'm confused because the summary statement says that the same tumor shrank from 30mm to 27mm. That's not very much at all. Which one is accurate? The width shrunk only from 20mm to 16mm, so it's probably the second measurement. And none of the other tumors showed any reductions. Crud!
So which part of this treatment will "exceed all expectations"? If it's not the side effects and it's not the number of doses I'll need, what is it? I'm banking on that this chemo will keep the cancer away longer then the other treatments have. Okay. I can live with that!
When I go back the next day for my Neulasta shot, Paula (one of the nurses that's been there through all three of the past occurrences with me) looks up the original PET scan for me to see what size it reported. The largest tumor was 38mm x 20mm, so the reduction is better than I originally thought. 38-37mm down to 27mm is about a 25% reduction. Not bad. Just not gone yet and lots more doses to look forward to.
Comme si, comme ca.
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