Unplugged. Week Two Follow Up.
I had my two week follow up today with my surgeon. My drainage has decreased to 5-10ml's for the last few days, so the drain is coming out! After two weeks I can finally take a shower!!! My plastic surgeon didn't want to risk infection from any thing getting in the drain tube so she advised "No showers/baths" until the drain was removed. She said some patients get creative with saran wrap or garbage bags and tape, but that seemed too complicated so I stuck with sponge baths.
I was really nervous about getting the drain removed. Terry and Scott did a great job distracting me, talking about everything except what was happening, which was really helpful. My pain meds make me a little wonky so when I felt a poke I thought it was my doctor injecting an anesthetic to numb the area, but she was actually cutting and pulling out the sutures. I was thinking, if I can feel the tube coming out with anesthesia, it must be really painful without. In truth, no anesthesia was given and it wasn't that bad. It was just weird to feel the tube sliding out from under my skin. It wasn't nearly as bad as I'd imagined. (I have read on forums that some drains have barbs on the end that hurt like hell when they are removed. Talk to your doctor about what kind of drain you have. You may need to take something before hand to take the edge off.)
The combination of drugs has made me nauseous, light headed and has increased my insomnia. I feel like I'm walking around in a foggy haze and not able to think clearly. I've felt dazed and confused but not in a good way, more in a paranoid the cops are coming way. My doctor recommended backing off of the narcotic pain killers and only using them as needed and instead scheduling the muscle relaxer into my medicine routine to help control the pain. After the mastectomy, my plastic surgeon put the temporary expander under the muscle that will be filled gradually and then replaced with the implant. I can feel the muscles tightening around the expander which has been painful and sensitive to the touch. The muscle relaxers should help everything loosen up and hurt less.
When I'm up and active for too long I get fatigued and more sore, so I'm still trying to stay in bed as much as possible. I've been listening to podcasts and farting around on the inter webs. "It's Time" by Imagine Dragons really struck a chord with me and when I looked up the video I found this non-official one below and learned about Tyler Robinson. If you don't want to cry you can watch the band's video here https://youtu.be/sENM2wA_FTg to hear the song, otherwise check out the home video below that Tyler's brother took.
So this is what you meant
When you said that you were spent
And now it's time to build from the bottom of the pit, right to the top
Don't hold back
Packing my bags and giving the Academy a rain check
I don't ever want to let you down
I don't ever want to leave this town
Cause after all
This city never sleeps at night
It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am
So this is where you fell
And I am left to sell
The path to heaven runs through miles of clouded hell right to the top
Don't look back
Turning to rags and giving the commodities a rain check
I don't ever want to let you down
I don't ever want to leave this town
Cause after all
This city never sleeps at night
It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am
It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am
This road never looked so lonely
This house doesn't burn down slowly
To ashes
To ashes
It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am
It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am
2/18/16
I was really nervous about getting the drain removed. Terry and Scott did a great job distracting me, talking about everything except what was happening, which was really helpful. My pain meds make me a little wonky so when I felt a poke I thought it was my doctor injecting an anesthetic to numb the area, but she was actually cutting and pulling out the sutures. I was thinking, if I can feel the tube coming out with anesthesia, it must be really painful without. In truth, no anesthesia was given and it wasn't that bad. It was just weird to feel the tube sliding out from under my skin. It wasn't nearly as bad as I'd imagined. (I have read on forums that some drains have barbs on the end that hurt like hell when they are removed. Talk to your doctor about what kind of drain you have. You may need to take something before hand to take the edge off.)
The combination of drugs has made me nauseous, light headed and has increased my insomnia. I feel like I'm walking around in a foggy haze and not able to think clearly. I've felt dazed and confused but not in a good way, more in a paranoid the cops are coming way. My doctor recommended backing off of the narcotic pain killers and only using them as needed and instead scheduling the muscle relaxer into my medicine routine to help control the pain. After the mastectomy, my plastic surgeon put the temporary expander under the muscle that will be filled gradually and then replaced with the implant. I can feel the muscles tightening around the expander which has been painful and sensitive to the touch. The muscle relaxers should help everything loosen up and hurt less.
When I'm up and active for too long I get fatigued and more sore, so I'm still trying to stay in bed as much as possible. I've been listening to podcasts and farting around on the inter webs. "It's Time" by Imagine Dragons really struck a chord with me and when I looked up the video I found this non-official one below and learned about Tyler Robinson. If you don't want to cry you can watch the band's video here https://youtu.be/sENM2wA_FTg to hear the song, otherwise check out the home video below that Tyler's brother took.
www.youtube.com/watch?v=mqwx2fAVUM0
Tyler battled a life threatening staph infection when he was 12 years old, he fought and beat it after 8 surgeries and a month in the ICU. Followed by 6 months of heavy antibiotics and hospital visits.
4 years later, at the age of 16 he was diagnosed with stage 4 Rhabdomyosarcoma, a rare form of cancer that had infected 95% of his bone marrow. After a year and a half of chemo (20 rounds) and 6 weeks of radiation he was declared cancer free. No doubt he fought like a champion during his battle with cancer. Just 4 months after being declared cancer free, at the age of 17, he unexpectedly passed away due to complications from 3 large cancerous tumors that had formed in his brain. This video is a memory of the great man that he is.
The story of Tyler's life and how Imagine Dragons got involved to start the Tyler Robinson Foundation is perfectly told in this additional video: www.youtube.com/watch?v=ISpAgxW1vQw
"It's Time" by Imagine DragonsTyler battled a life threatening staph infection when he was 12 years old, he fought and beat it after 8 surgeries and a month in the ICU. Followed by 6 months of heavy antibiotics and hospital visits.
4 years later, at the age of 16 he was diagnosed with stage 4 Rhabdomyosarcoma, a rare form of cancer that had infected 95% of his bone marrow. After a year and a half of chemo (20 rounds) and 6 weeks of radiation he was declared cancer free. No doubt he fought like a champion during his battle with cancer. Just 4 months after being declared cancer free, at the age of 17, he unexpectedly passed away due to complications from 3 large cancerous tumors that had formed in his brain. This video is a memory of the great man that he is.
The story of Tyler's life and how Imagine Dragons got involved to start the Tyler Robinson Foundation is perfectly told in this additional video: www.youtube.com/watch?v=ISpAgxW1vQw
So this is what you meant
When you said that you were spent
And now it's time to build from the bottom of the pit, right to the top
Don't hold back
Packing my bags and giving the Academy a rain check
I don't ever want to let you down
I don't ever want to leave this town
Cause after all
This city never sleeps at night
It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am
So this is where you fell
And I am left to sell
The path to heaven runs through miles of clouded hell right to the top
Don't look back
Turning to rags and giving the commodities a rain check
I don't ever want to let you down
I don't ever want to leave this town
Cause after all
This city never sleeps at night
It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am
It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am
This road never looked so lonely
This house doesn't burn down slowly
To ashes
To ashes
It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am
It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am
2/18/16
Tarp and towels = clean hair solution
Dry Shampoo Fail
It's annoying that most of the products targeted for breast cancer patients are not in my demographic. Sadly, I know too many people in their 30s and 40s dealing with cancer but in all of the pamphlets and marketing materials, everyone is in their 60s and 70s.
Since I can't shower until I get the drain out, they sent me home with this dry shampoo to wash my hair. I'm not sure if it only works on short hair but after using this and blow drying my hair looked like I had an inch of grease at my roots. Complete product fail.
2/13/16
Since I can't shower until I get the drain out, they sent me home with this dry shampoo to wash my hair. I'm not sure if it only works on short hair but after using this and blow drying my hair looked like I had an inch of grease at my roots. Complete product fail.
2/13/16
Post Week One
It's been up and down. Being confined to bed for the first week was really limiting, but necessary to save as much skin as possible and hopefully save the nipple that had been biopsied from the inside. In order to get clear margins my surgeon had to cut really close to the skin during the mastectomy. Turns out I also have pretty thin skin, so there were a few sections my doctors were concerned might lose blood supply and become necrotic tissue. After my first follow up appointment they said it was looking good and I could move around more. But I overdid it and gravity took a nasty toll on my boob and my drainage doubled, so now I'm bedridden by choice.
I have to keep the drain in as I have too much fluid still coming out. The drain is one of the painful parts, especially at night when I'm trying not to sleep on it. My shoulder feels like it was dislocated as they had my arm out perpendicular to my body for the lymph node removal. I got a higher dose of pain meds that I hope will help. Right now I feel like the end of this video...
"This Too Shall Pass" by OK Go https://www.youtube.com/watch?v=qybUFnY7Y8w
You know you can't keep lettin' it get you down
And you can't keep draggin' that dead weight around.
If there ain't all that much to lug around,
Better run like hell when you hit the ground.
When the morning comes.
When the morning comes.
You can't stop these kids from dancin'.
Why would you want to?
Especially when you're already gettin' yours.
'Cause if your mind don't move and your knees don't bend,
well don't go blamin' the kids again.
When the morning comes.
When the morning comes.
When the morning comes.
When the morning comes.
When the morning comes.
When the morning comes.
Let it go, this too shall pass.
Let it go, this too shall pass.
Let it go, this too shall pass.
(You know you can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)
Let it go, this too shall pass.
(You know you can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)
Hey!
Let it go, this too shall pass.
(You know you can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)
When the morning comes.
(You can't keep lettin' it get you down. You can't keep lettin' it get you down.)
When the morning comes.
(You can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)
When the morning comes.
(You can't keep lettin' it get you down. You can't keep lettin' it get you down.)
When the morning comes.
(You can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)
When the morning comes!
2/11/16
I have to keep the drain in as I have too much fluid still coming out. The drain is one of the painful parts, especially at night when I'm trying not to sleep on it. My shoulder feels like it was dislocated as they had my arm out perpendicular to my body for the lymph node removal. I got a higher dose of pain meds that I hope will help. Right now I feel like the end of this video...
"This Too Shall Pass" by OK Go https://www.youtube.com/watch?v=qybUFnY7Y8w
You know you can't keep lettin' it get you down
And you can't keep draggin' that dead weight around.
If there ain't all that much to lug around,
Better run like hell when you hit the ground.
When the morning comes.
When the morning comes.
You can't stop these kids from dancin'.
Why would you want to?
Especially when you're already gettin' yours.
'Cause if your mind don't move and your knees don't bend,
well don't go blamin' the kids again.
When the morning comes.
When the morning comes.
When the morning comes.
When the morning comes.
When the morning comes.
When the morning comes.
Let it go, this too shall pass.
Let it go, this too shall pass.
Let it go, this too shall pass.
(You know you can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)
Let it go, this too shall pass.
(You know you can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)
Hey!
Let it go, this too shall pass.
(You know you can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)
When the morning comes.
(You can't keep lettin' it get you down. You can't keep lettin' it get you down.)
When the morning comes.
(You can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)
When the morning comes.
(You can't keep lettin' it get you down. You can't keep lettin' it get you down.)
When the morning comes.
(You can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)
When the morning comes!
2/11/16
Suck it Cancer. You're next Pain!!
I had my follow up appointment today with my surgeons and the pathology reports are in...
We caught it early, it’s stage 1, they removed enough tissue to have clear margins, my lymph nodes came back negative for cancer. I have some complications from the surgery that I'll go into later but I have to keep my drain tube in for another week. I have some new drugs to try to help manage the pain better.
I meet with my oncologist next week to see what the next steps are. I’m really hoping I get to skip chemo and radiation and go straight for the drugs that cause menopause! Woo hoo, bring on the hot flashes. Ugh.
2/11/16
We caught it early, it’s stage 1, they removed enough tissue to have clear margins, my lymph nodes came back negative for cancer. I have some complications from the surgery that I'll go into later but I have to keep my drain tube in for another week. I have some new drugs to try to help manage the pain better.
I meet with my oncologist next week to see what the next steps are. I’m really hoping I get to skip chemo and radiation and go straight for the drugs that cause menopause! Woo hoo, bring on the hot flashes. Ugh.
2/11/16
Flat out tired
I'm pretty much sleeping all of the time and getting up to walk to the bathroom every few hours when I get pain meds. My plastic surgeon is concerned about the thinness of my skin, so to try to make the implant as successful as possible, I need to be flat on my back 95% of the time trying to keep the area as warm as possible to increase blood flow to the area. I never sleep on my back so it's a bit uncomfortable but if it can save my nipple and skin I'll deal with it. The heater is cranked up in my room and I have a mound of blankets to keep me warm. Downside... I'm super sweaty stinky, but can't take a shower or get the incision wet until after my follow up appointment next Thursday. I'm hoping to have some results early next week to know what stage the cancer is or if it spread to my lymph nodes. Just sleeping as much as I can now.
2/7/16
2/7/16
Surgery
Normally you can only have one relative at a time in the pre-op room, but my Aunt Terry was able to get both my Mom and Dad in. I love my parents, but I guarantee I was the only 41-year-old being serenaded with "Hush Little Baby, Don't Say a Word" while waiting for a mastectomy. Facepalm.
I completely don't remember putting on the hairnet, so the anesthesia must have been kicking in. I do remember being wheeled into the operating room. As they slid me onto the operating table, my anesthesiologist said we heard you like listening to music, do you prefer Spotify or Pandora? Pandora! What station? Pop Punk Radio! I recognized the song that started playing and then was out cold. I can't recall which song it was, but I so wish it could have been "I Wanna Be Sedated". The Ramones classic should be a hospital standard.
Post-surgery, my Dad (the selfie king) was standing by to capture the moment. I was happy to oblige. He didn't see the first pose until later.
PSA: Don't watch "Guardians of the Galaxy" after a mastectomy; comedy hurts, laughter is not the best medicine.
2/4/16
I completely don't remember putting on the hairnet, so the anesthesia must have been kicking in. I do remember being wheeled into the operating room. As they slid me onto the operating table, my anesthesiologist said we heard you like listening to music, do you prefer Spotify or Pandora? Pandora! What station? Pop Punk Radio! I recognized the song that started playing and then was out cold. I can't recall which song it was, but I so wish it could have been "I Wanna Be Sedated". The Ramones classic should be a hospital standard.
Post-surgery, my Dad (the selfie king) was standing by to capture the moment. I was happy to oblige. He didn't see the first pose until later.
PSA: Don't watch "Guardians of the Galaxy" after a mastectomy; comedy hurts, laughter is not the best medicine.
2/4/16
Bags are almost packed. Surgery tomorrow.
The countdown is on. My surgery got bumped up to 11am tomorrow. Today I had to go to Nuclear Medicine and get 3 radioactive injections which I'm pretty sure means I will be developing superhero powers any minute now. Or it's to see which lymph nodes the area by my tumor is draining to so they can determine if the cancer has spread or if it is contained in the tumor.
Technically I'm only supposed to bring loose clothing, ID, insurance card and payment for deductible (no jewelry, no personal belongings), but since I'll be staying overnight I'm packing some warm and comfy supplies (hospital AC is usually too cold for me).
• button down shirt
• comfortable pants
• warm comfy pajamas
• pillow
• warm soft blanket
• Kleenex
• toothbrush and toiletries
• camera
• water bottle
• throat lozenges
• chapstick
• scarf/soft jacket
• Comedy DVDs (I got these free from work)
• ear buds and music
(...I know I'm forgetting something)
Off to bed for me. I'll try to have someone post an update after surgery. THANKS FOR ALL OF THE SUPPORT!!!!
2/3/16
Technically I'm only supposed to bring loose clothing, ID, insurance card and payment for deductible (no jewelry, no personal belongings), but since I'll be staying overnight I'm packing some warm and comfy supplies (hospital AC is usually too cold for me).
• button down shirt
• comfortable pants
• warm comfy pajamas
• pillow
• warm soft blanket
• Kleenex
• toothbrush and toiletries
• camera
• water bottle
• throat lozenges
• chapstick
• scarf/soft jacket
• Comedy DVDs (I got these free from work)
• ear buds and music
(...I know I'm forgetting something)
Off to bed for me. I'll try to have someone post an update after surgery. THANKS FOR ALL OF THE SUPPORT!!!!
2/3/16
Radioactive Injections
The day before my surgery I had to go to Nuclear Medicine to get 3 radioactive injections. I'm a little disappointed I didn't develop any superhero powers. The radioactive injections are typically a blue dye injected near the tumor to locate sentinel lymph node.
My doctor gave me the option to have my boob numbed by 3 injections of anesthesia first or just the 3 radioactive injections. 6 shots versus 3 shots. I hate needles and since the needles were the same size, I went with 3 stabbings instead of 6 to speed things up. Since I'd survived the ultrasound core needle biopsy and stereotactic breast biopsy, I figured how bad could it be.
He told me they progressively get worse. The first injection barely hurt and was followed by a little burning sensation. I said "Oh that wasn't bad at all". Then the second shot, "that definitely hurts more than the first" to which he replied slowly in a kind voice "yeeeaaaah". Then the third shot, "oh crap that burns!" and he replied "I told you it would get worse" in a sympathetic voice (he was pretty calming through it all). After the 3rd shot I regretted not getting the anesthesia. If I had to do it over again, I'd have asked to numb the area for the 3rd shot as that was by far the worst.
The radioactive fluid was injected around my tumor so my surgeon could follow it to determine where it drained. If the cancer cells had developed the ability to spread to other parts of the body they would go to those lymph nodes first. Tomorrow my surgeon will identify and remove those nearby lymph nodes and then test if cancer cells are present. More info on sentinel node biopsy here.
The whole time I was there I had the song "Radioactive" stuck in my head.
"Radioactive" by Pentatonix and Lindsey Stirling (Imagine Dragons cover)
Whoa, oh, oh
Whoa, oh, oh
Whoa, oh, oh
Whoa
I'm waking up to ash and dust
I wipe my brow and I sweat my rust
I'm breathing in the chemicals
I'm breaking in, shaping up, then checking out on the prison bus
This is it, the apocalypse
Whoa
I'm waking up, I feel it in my bones
Enough to make my systems blow
Welcome to the new age, to the new age
Welcome to the new age, to the new age
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
I raise my flags, don my clothes
It's a revolution, I suppose
We're painted red to fit right in
Whoa
I'm breaking in, shaping up, then checking out on the prison bus
This is it, the apocalypse
Whoa
I'm waking up, I feel it in my bones
Enough to make my systems blow
Welcome to the new age, to the new age
Welcome to the new age, to the new age
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
All systems go, the sun hasn't died
Deep in my bones, straight from inside
I'm waking up, I feel it in my bones
Enough to make my systems blow
Welcome to the new age, to the new age
Welcome to the new age, to the new age
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
2/3/16
My doctor gave me the option to have my boob numbed by 3 injections of anesthesia first or just the 3 radioactive injections. 6 shots versus 3 shots. I hate needles and since the needles were the same size, I went with 3 stabbings instead of 6 to speed things up. Since I'd survived the ultrasound core needle biopsy and stereotactic breast biopsy, I figured how bad could it be.
He told me they progressively get worse. The first injection barely hurt and was followed by a little burning sensation. I said "Oh that wasn't bad at all". Then the second shot, "that definitely hurts more than the first" to which he replied slowly in a kind voice "yeeeaaaah". Then the third shot, "oh crap that burns!" and he replied "I told you it would get worse" in a sympathetic voice (he was pretty calming through it all). After the 3rd shot I regretted not getting the anesthesia. If I had to do it over again, I'd have asked to numb the area for the 3rd shot as that was by far the worst.
The radioactive fluid was injected around my tumor so my surgeon could follow it to determine where it drained. If the cancer cells had developed the ability to spread to other parts of the body they would go to those lymph nodes first. Tomorrow my surgeon will identify and remove those nearby lymph nodes and then test if cancer cells are present. More info on sentinel node biopsy here.
The whole time I was there I had the song "Radioactive" stuck in my head.
"Radioactive" by Pentatonix and Lindsey Stirling (Imagine Dragons cover)
Whoa, oh, oh
Whoa, oh, oh
Whoa, oh, oh
Whoa
I'm waking up to ash and dust
I wipe my brow and I sweat my rust
I'm breathing in the chemicals
I'm breaking in, shaping up, then checking out on the prison bus
This is it, the apocalypse
Whoa
I'm waking up, I feel it in my bones
Enough to make my systems blow
Welcome to the new age, to the new age
Welcome to the new age, to the new age
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
I raise my flags, don my clothes
It's a revolution, I suppose
We're painted red to fit right in
Whoa
I'm breaking in, shaping up, then checking out on the prison bus
This is it, the apocalypse
Whoa
I'm waking up, I feel it in my bones
Enough to make my systems blow
Welcome to the new age, to the new age
Welcome to the new age, to the new age
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
All systems go, the sun hasn't died
Deep in my bones, straight from inside
I'm waking up, I feel it in my bones
Enough to make my systems blow
Welcome to the new age, to the new age
Welcome to the new age, to the new age
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
2/3/16
Insurance paperwork stress
Tomorrow is my last day of work. My surgery got bumped up to 11am on Thursday, so now I have to go in Wednesday to do the pre-surgery injections (which I have no idea exactly what those are yet). I've been in a mad dash to get all of the necessary paperwork for my medical leave of absence submitted. After finally getting my request to the right department at Kaiser I got the completed "Medical Leave Certification Form" back today. My doctor said we won't know if I need chemo until surgery when they will see if the cancer has metastasized or spread to my lymph nodes, but just seeing this 'No' checked gave me a little more hope that the mastectomy might be all I need. Knock on wood.
2/1/16
2/1/16
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