Friday I went in for surgery to implant the Medi-port. It looks like this before it goes in. I was going to post a photo of what it looks like AFTER it goes in, but I know some of you (Meaghan Burdick) are a little faint of heart when it comes to the blood and guts. If you're into that kind of thing, you can check out the More Images from My Hodgkins Adventure gallery. Instead, for this post, I decided on a picture of me wearing this awesome, sequined, bald eagle tank top that Jen Bradwell and Todd Boekelheide sent me as armor. They said they chose it because it reflected the perfect mix of my midwestern, Michigan roots and rock star sensibilities. It seemed like the perfect choice for surgery, and I can't wear it without making my signature, patented Ozzie Osborne Face.
Okay so back to the port, let's just say....ouch. They implant the device under your skin, just above the um, "lovely lady lumps" and then attach the tube to a main artery. The nurse can then "access" the port (that's fancy doctor speak for "stick a needle there") and administer chemo drugs that way instead of having to go through the delicate little veins in the arm. It also means that during chemo treatments, I'll have both hands free for arm wrestling competitions and other cool stuff, provided I can stay awake for more than 15 minutes.
The downsides are: a) they cut me; b) they cut me; and c) they cut me.
Other downsides (besides the fact that they cut me) include that you can see the port through my skin (ala “Alien” - so weird) and that it will leave a scar. Actually, come to think of it, the scar part is not so bad. I'll just add it to the collection I started before I got cancer, back when stupidity was the main reason I ended up with scars. (Remember to have me tell you about the time that I accidentally did a flip over a friend's couch and broke a glass coffee table...with my knee.)
The recovery time was supposed to be a day or two, but here it is 3 days later and I still feel a little the Nupogen horse's evil twin has kicked me in the chest. Bastard. I always think I'm prepared for them, but somehow they still manage to sneak up on me. No small feat for a horse.
I’m up and around, just sore. Mostly it hurts to stretch my neck, I can’t carry my purse on the right side and I can't sleep on my stomach - which means I can't really sleep. On the upside, I’ve made a sizeable dent in my reading list.
Here’s the history of the port: I was going to try to ride out the chemo wave by getting drugs via IV in my arm. I (foolishly, as it turns out) thought ports were only good for people who don’t like needle sticks. I don’t mind them and never have...definitely not enough incentive for surgery, more pain, more scars. Then my first day of chemo, my favorite nurse Dionne, said “you don’t have a port? I highly recommend the port.” I asked her why, at which point she said something *no one*, especially no one with letters after his or her name, had mentioned before:
“the Adriamycin can be necrotic to the skin.” Necrotic is doctor speak for “causes tissue death”. As in, acts like a flesh eating zombie.
WTF??!?
“Oh yeah,” Dionne explained, “if it leaks it’s really painful and you might need plastic surgery to fix the damage.” Um….THIS is a whole other conversation entirely -- as in "I’ll take 'Information That Would Have Been Nice to Have From My Doctor a Month Ago' for $1,000, Alex."
Upon further research I learned that chances are small, but…still. Much like every other decision with all things cancer-related, I feel like the choice is “do you want to get bitten by the lion or the grizzly bear?” Ummm…. “The lion has serrated teeth and it will leave a nasty scar, but the bear’s bite is likely to give you a nasty infection. Think it over and let me know which you prefer.” Ummm….I would prefer to be on the beach with a margarita...
Mostly it’s a good reminder of something I keep learning over and over. As many of you know, this year has been a mash-up of all things life and death: Losing my mom, watching my sister give birth to my beautiful niece Aubrey, and then finding out 9 days later that I have cancer. And through it all, I’m realizing that as much as I hate them, many clichés exist for a reason. Things like “her death left a hole in my heart that can never be filled” or “a baby brings you so much joy” or "information is power" and “you need to be your own best advocate.”
The last part is a lesson I *keep* learning throughout in this process -- first, when I felt the initial lump three years ago (and the doctor in SF sent me for an ultrasound, said it was just a swollen lymph node that would go away.) And most recently last week, when the head chemo nurse told me I could have the surgery whenever because "we can use the new port the same day it's inserted!" (really? because if anyone had come within ten feet of my new port on Friday, I would have shanked them. I'm not kidding.) What I'm trying to say is that being your own best advocate is a real skill - a skill that I am constantly honing. Ditto with things like trusting your instincts, asking questions and then more questions, and pushing back against the “experts” when what they tell you doesn’t jive with what you’re feeling or what you know to be true when you're really quiet and just listen to your body.
Charlie gave me the best advice on this front: "pretend like it's Aubrey who is sick and needs something. How far would you go to get her what she needs?" And the answer is: as far as it takes. And I wouldn't care if I offend some doctor, or some nurse thinks I am being "pushy". So take that cancer - I got the info, I'm all ported up, I'm not afraid to push back and I'm coming for you.
Okay so back to the port, let's just say....ouch. They implant the device under your skin, just above the um, "lovely lady lumps" and then attach the tube to a main artery. The nurse can then "access" the port (that's fancy doctor speak for "stick a needle there") and administer chemo drugs that way instead of having to go through the delicate little veins in the arm. It also means that during chemo treatments, I'll have both hands free for arm wrestling competitions and other cool stuff, provided I can stay awake for more than 15 minutes.
The downsides are: a) they cut me; b) they cut me; and c) they cut me.
Other downsides (besides the fact that they cut me) include that you can see the port through my skin (ala “Alien” - so weird) and that it will leave a scar. Actually, come to think of it, the scar part is not so bad. I'll just add it to the collection I started before I got cancer, back when stupidity was the main reason I ended up with scars. (Remember to have me tell you about the time that I accidentally did a flip over a friend's couch and broke a glass coffee table...with my knee.)
The recovery time was supposed to be a day or two, but here it is 3 days later and I still feel a little the Nupogen horse's evil twin has kicked me in the chest. Bastard. I always think I'm prepared for them, but somehow they still manage to sneak up on me. No small feat for a horse.
I’m up and around, just sore. Mostly it hurts to stretch my neck, I can’t carry my purse on the right side and I can't sleep on my stomach - which means I can't really sleep. On the upside, I’ve made a sizeable dent in my reading list.
Here’s the history of the port: I was going to try to ride out the chemo wave by getting drugs via IV in my arm. I (foolishly, as it turns out) thought ports were only good for people who don’t like needle sticks. I don’t mind them and never have...definitely not enough incentive for surgery, more pain, more scars. Then my first day of chemo, my favorite nurse Dionne, said “you don’t have a port? I highly recommend the port.” I asked her why, at which point she said something *no one*, especially no one with letters after his or her name, had mentioned before:
“the Adriamycin can be necrotic to the skin.” Necrotic is doctor speak for “causes tissue death”. As in, acts like a flesh eating zombie.
WTF??!?
“Oh yeah,” Dionne explained, “if it leaks it’s really painful and you might need plastic surgery to fix the damage.” Um….THIS is a whole other conversation entirely -- as in "I’ll take 'Information That Would Have Been Nice to Have From My Doctor a Month Ago' for $1,000, Alex."
Upon further research I learned that chances are small, but…still. Much like every other decision with all things cancer-related, I feel like the choice is “do you want to get bitten by the lion or the grizzly bear?” Ummm…. “The lion has serrated teeth and it will leave a nasty scar, but the bear’s bite is likely to give you a nasty infection. Think it over and let me know which you prefer.” Ummm….I would prefer to be on the beach with a margarita...
Mostly it’s a good reminder of something I keep learning over and over. As many of you know, this year has been a mash-up of all things life and death: Losing my mom, watching my sister give birth to my beautiful niece Aubrey, and then finding out 9 days later that I have cancer. And through it all, I’m realizing that as much as I hate them, many clichés exist for a reason. Things like “her death left a hole in my heart that can never be filled” or “a baby brings you so much joy” or "information is power" and “you need to be your own best advocate.”
The last part is a lesson I *keep* learning throughout in this process -- first, when I felt the initial lump three years ago (and the doctor in SF sent me for an ultrasound, said it was just a swollen lymph node that would go away.) And most recently last week, when the head chemo nurse told me I could have the surgery whenever because "we can use the new port the same day it's inserted!" (really? because if anyone had come within ten feet of my new port on Friday, I would have shanked them. I'm not kidding.) What I'm trying to say is that being your own best advocate is a real skill - a skill that I am constantly honing. Ditto with things like trusting your instincts, asking questions and then more questions, and pushing back against the “experts” when what they tell you doesn’t jive with what you’re feeling or what you know to be true when you're really quiet and just listen to your body.
Charlie gave me the best advice on this front: "pretend like it's Aubrey who is sick and needs something. How far would you go to get her what she needs?" And the answer is: as far as it takes. And I wouldn't care if I offend some doctor, or some nurse thinks I am being "pushy". So take that cancer - I got the info, I'm all ported up, I'm not afraid to push back and I'm coming for you.
RSS Feed