Here is my cancer playlist. I probably forgot some songs, but did my best. There is a reason for each song choice. (Just click on a song in the list to go to YouTube.)
If you need to feel like a warrior (and like rock music) "Last Man Standing" and "Invincible" are good songs to start with.
If you want songs from a Christian view, try Moriah Peters' "Brave" or "It's Not Over Yet".
If you want songs about cancer survivors, try "Skin (Sarabeth)" and "Live Like You Were Dying".
If you need to feel like someone has your back, listen to "Stand by You' (either one), or "My Wish".
If you feel like you just can't handle it anymore, start with "If You're Going Through Hell", "Every Storm (Runs Out Of Rain)", or "The Whole World is Watching".
If you just need a couple of toe-tapping songs to lighten the mood or celebrate completing treatment, "Happy" and "Can't Stop the Feeling" have you covered.
There are a lot of different choices here. I really hope you find at least one song that helps you through.
I'm cheering you on, cancer wayfarers and warriors. You are not alone.
____________________
Aloe Blacc - The Man (Explicit)
Imagine Dragons - Believer
Imagine Dragons - Radioactive
Kelly Clarkson - Stronger (What Doesn't Kill You)
Jamie Foxx - Winner (ft. Justin Timberlake & T.I.)
The Script - Hall of Fame (ft. will.i.am)
Demi Lovato - Skyscraper
Demi Lovato - Warrior (Audio)
Demi Lovato - Confident
Idina Menzel - Defying Gravity
Lea Michele - Cannonball
HAMMERFALL - Last Man Standing
Queen - Princes Of The Universe
Sara Bareilles - Brave
Moriah Peters - Brave
Rascal Flatts - Skin (Sarabeth)
Rascal Flatts - My Wish
Rachel Platten - Fight Song
Rachel Platten - Stand By You
Daniel Powter - Bad Day
Alicia Keys - Girl On Fire
Pat Benatar - Invincible
Marlisa - Stand By You
Survivor - Eye Of The Tiger
Katy Perry - Roar
Katy Perry - Rise
Katy Perry - Firework
Andra Day - Rise Up
Des'ree - You Gotta Be
Destiny's Child - Survivor (ft. Da Brat)
Avicii - Hey Brother
La Roux - Bulletproof
Tim McGraw - Live Like You Were Dying
David Guetta - Titanium ft. Sia
for KING & COUNTRY - It's Not Over Yet
Maddie & Tae - Fly
Lee Ann Womack - I Hope You Dance
Pharrell Williams - Happy
Within Temptation - Whole World is Watching (ft. Piotr Rogucki)
Sia - The Greatest
Jo Dee Messina Bring on the Rain
Melissa Etheridge - I Run For Life
Gary Allan - Every Storm (Runs Out Of Rain)
Rodney Atkins - If You're Going Through Hell
Sixx A.M. - Skin
Nickelback - Lullaby
Justin Timberlake - Can't stop The Feeling
Thursday, August 31, 2017
Tuesday, August 29, 2017
Labor Day and desserts
My husband, sister, and I are in charge of desserts for the family get-together, so says the mom. It's kind of my fault, though. I'm researching dessert recipes lately.
I loved baking, once upon a time. Baking is easier than cooking meals (on average) because most desserts require only a few steps without constant stirring, extra cutting, etc. The lower difficulty level really appeals to me as a disabled person, though Mr. Davicob will still have to fetch things and handle the oven.
My mom is a fantastic cook/baker. She made Mr. Davicob's and my wedding cake, and it looked professional. I spend quite a few holidays in the kitchen with my mom, learning something new each time. The making is the highlight, not the consumption.
For my contribution, I plan on making a "cheat" pumpkin spice recipe. I love autumn, and Labor Day, to me, signals summer's end. It might not fit in with grilled meat, Jell-O, and fruit salad... but it works for me.
Mr. Davicob and I have a couple extra recipes on hand in case something goes awry.
________________________________________
Looking up recipes is a nice diversion from the icky things in my life. This type of research and planning feels... comforting.
I loved baking, once upon a time. Baking is easier than cooking meals (on average) because most desserts require only a few steps without constant stirring, extra cutting, etc. The lower difficulty level really appeals to me as a disabled person, though Mr. Davicob will still have to fetch things and handle the oven.
My mom is a fantastic cook/baker. She made Mr. Davicob's and my wedding cake, and it looked professional. I spend quite a few holidays in the kitchen with my mom, learning something new each time. The making is the highlight, not the consumption.
For my contribution, I plan on making a "cheat" pumpkin spice recipe. I love autumn, and Labor Day, to me, signals summer's end. It might not fit in with grilled meat, Jell-O, and fruit salad... but it works for me.
Mr. Davicob and I have a couple extra recipes on hand in case something goes awry.
________________________________________
Looking up recipes is a nice diversion from the icky things in my life. This type of research and planning feels... comforting.
Monday, August 28, 2017
The 2nd opinion & minus 3 weeks
Dr. R. will send my files down to a gynecologic oncologist. I await a call from the new doctor's office. She's one of the best in the country/world and has more options under her belt. She's an even farther journey but, if she's the best...
I want my ducks in a row. I want to know, by the time treatment begins, I've done everything I can to assure the best possible outcome.
I cringe at the pain of another, farther appointment. I worry more time will be spent talking than treating. My two-month Cancerversary was the 26th... and no one has a definitive plan.
After I see the new oncologist, Dr. R. will talk to her about my situation. Hopefully, I will be receiving radiation by the end of September.
________________________________________
On an excellent note, Dr. R. said my external radiation treatment will be between five and six weeks... not nine. I guess the scans were promising enough for me to not need as much. I can do this...
I want my ducks in a row. I want to know, by the time treatment begins, I've done everything I can to assure the best possible outcome.
I cringe at the pain of another, farther appointment. I worry more time will be spent talking than treating. My two-month Cancerversary was the 26th... and no one has a definitive plan.
After I see the new oncologist, Dr. R. will talk to her about my situation. Hopefully, I will be receiving radiation by the end of September.
________________________________________
On an excellent note, Dr. R. said my external radiation treatment will be between five and six weeks... not nine. I guess the scans were promising enough for me to not need as much. I can do this...
Sunday, August 27, 2017
Busy weeks before treatment
Two or three weeks. That's how long I think I have before radiation treatment. If the stars align, I will be seeing Dr. R. this week. But, things will take time to set up for the treatment itself. Next Monday is also a holiday in the United States.
I planned on seeing Dr. R. this week. Next week, Mr. Davicob and I were going to go out on a date. Otherwise, I didn't have much planned. Well, now I do.
One day this week, my sister will be coming over for the day. She's home from a three-week vacation and we haven't seen each other in over a month. I'm looking forward to it.
On Labor Day, Mr. Davicob and I are going to my mom's for a grill-out. We just heard about it this weekend. Two of my brothers (our baby brother should be at college) and my sister plan on being there. It promises to be a good family afternoon.
Things in life often just spring up but, even when they're enjoyable, they drain me. Extra outings mean more pain flares. A visitor (regardless of how much I love the person) means one less day of relaxation.
My family is worth it. They are all candles within my darkness. I love them with all pieces of my heart. When treatment begins, I might say "no" a little more. For now though, I'll create memories.
I planned on seeing Dr. R. this week. Next week, Mr. Davicob and I were going to go out on a date. Otherwise, I didn't have much planned. Well, now I do.
One day this week, my sister will be coming over for the day. She's home from a three-week vacation and we haven't seen each other in over a month. I'm looking forward to it.
On Labor Day, Mr. Davicob and I are going to my mom's for a grill-out. We just heard about it this weekend. Two of my brothers (our baby brother should be at college) and my sister plan on being there. It promises to be a good family afternoon.
Things in life often just spring up but, even when they're enjoyable, they drain me. Extra outings mean more pain flares. A visitor (regardless of how much I love the person) means one less day of relaxation.
My family is worth it. They are all candles within my darkness. I love them with all pieces of my heart. When treatment begins, I might say "no" a little more. For now though, I'll create memories.
The Ways I'm Lucky
It's hard to see the good things when you're facing hardship. Sometimes, it's even more difficult with a cancer diagnosis. But, I'm lucky in so many ways.
I'm not going through this alone. My husband, mother, brothers, sister, and parents-in-law are all behind me. I'm on a program where I have a two-person team helping me with "quality of life" stuff and they're great. I can't imagine not having someone rooting for you during this.
I'm on Medicaid. Cancer is an expensive disease. I don't have to worry about affording treatment. So many people go bankrupt or become homeless just trying to survive cancer and get well.
My cancer hasn't spread far, is an "early" grade, and exists in a place that's common and easier to eradicate. No major organs show signs of it. My outlook is good.
The doctors (outside of the surgeon) are keeping on top of things and are conferring with other doctors about my "unique set of challenges". They interact with me like I'm a human. They aren't making me wait six weeks for another appointment.
Though I wish I could work, I'm glad right now that I don't have a "regular job". I can barely plan treatment being a homebody. Juggling radiation while trying to keep a job sounds impossible.
____________________________
Cancer still sucks. I just can't deny that I'm better off than some people. Not that the knowledge helps me during the sad or frustrating parts.
I'm not going through this alone. My husband, mother, brothers, sister, and parents-in-law are all behind me. I'm on a program where I have a two-person team helping me with "quality of life" stuff and they're great. I can't imagine not having someone rooting for you during this.
I'm on Medicaid. Cancer is an expensive disease. I don't have to worry about affording treatment. So many people go bankrupt or become homeless just trying to survive cancer and get well.
My cancer hasn't spread far, is an "early" grade, and exists in a place that's common and easier to eradicate. No major organs show signs of it. My outlook is good.
The doctors (outside of the surgeon) are keeping on top of things and are conferring with other doctors about my "unique set of challenges". They interact with me like I'm a human. They aren't making me wait six weeks for another appointment.
Though I wish I could work, I'm glad right now that I don't have a "regular job". I can barely plan treatment being a homebody. Juggling radiation while trying to keep a job sounds impossible.
____________________________
Cancer still sucks. I just can't deny that I'm better off than some people. Not that the knowledge helps me during the sad or frustrating parts.
Saturday, August 26, 2017
MRI/CT results
Tuesday, I went through my second-ever CT scan. I also had my first MRI scan. I would endure fifty CT scans before I'd submit to another MRI.
With chronic pain, the MRI scan is unbearable. There is no movement allowed during it, which might be tolerable if I weren't squeezed tight in there on my (normally painful) back with pads around my exposed skin making it tighter. It also felt like I was still lying on the plastic transfer board they first used to move me, though I could be wrong. I spent a good half hour in there... around twenty minutes of it with numb fingers, hurting back, and my right hip burning so badly, I actually thought my skin was melting. I cried.
___________________________
Wednesday, I went alone to see Dr. C. because Mr. Davicob wasn't feeling well (he's under a lot of stress). Dr. C. said that a couple of nodes in the expected region show signs of cancer. There is also still residual cancer where my tumor was removed.
The anomaly in my sternum is a node between my lungs that's enlarged or reacting to the injections for some reason. People don't tend to get cancer right there, so Dr. C. isn't worried about it. When Dr. R. comes back from vacation, Dr. C. will ask Dr. R. if he wants to test it.
I'm relieved the cancer seems contained to the same area. Radiation is still what I need.
Next week, I will likely end up seeing Dr. R. again. We'll talk about the best course of action for my radiation treatment.
With chronic pain, the MRI scan is unbearable. There is no movement allowed during it, which might be tolerable if I weren't squeezed tight in there on my (normally painful) back with pads around my exposed skin making it tighter. It also felt like I was still lying on the plastic transfer board they first used to move me, though I could be wrong. I spent a good half hour in there... around twenty minutes of it with numb fingers, hurting back, and my right hip burning so badly, I actually thought my skin was melting. I cried.
___________________________
Wednesday, I went alone to see Dr. C. because Mr. Davicob wasn't feeling well (he's under a lot of stress). Dr. C. said that a couple of nodes in the expected region show signs of cancer. There is also still residual cancer where my tumor was removed.
The anomaly in my sternum is a node between my lungs that's enlarged or reacting to the injections for some reason. People don't tend to get cancer right there, so Dr. C. isn't worried about it. When Dr. R. comes back from vacation, Dr. C. will ask Dr. R. if he wants to test it.
I'm relieved the cancer seems contained to the same area. Radiation is still what I need.
Next week, I will likely end up seeing Dr. R. again. We'll talk about the best course of action for my radiation treatment.
Friday, August 25, 2017
MRI (What to expect)
On Tuesday, I had my MRI. I might not remember everything, but I thought it might be beneficial to go through the steps... in case anyone is scared. Your experience may differ.
________________
Notes: Depending on what part of your body is scanned, you may have to fast.
Eyeglasses, hearing aids, jewelry, shoes, etc. will have to be removed before you get to the machine. (If you wear a bra, find one without hooks or metal stays, like a sports bra. Leave clothing with zippers, metal buttons, metallic studs at home.)
Tell them if you have a pacemaker, insulin pump, or other internal machinery because the MRI can cause them to malfunction. Tell them if you have any metal rods, pins, plates, or replacements (and about metal dental work).
If you are (or ever were) a metalworker, tell them! Shavings can get inside your body and cause havoc during an MRI scan, potentially injuring you internally.
On extremely rare occasions, pants may burn skin in an MRI machine. You may have to pull down or take off your pants before being scanned.
Tell people if you're claustrophobic. If you are, an MRI will be rough.
It might help you to have a conversation with your doctor before scheduling. Some of these things may mean you can't be scanned safely or thoroughly.
___________________
1. A technician comes into the waiting room and gives you a card to read about metal and MRI machines. Certain metals can obscure parts of you. Metals that are magnetic will be attracted to the machine... hurting you.
2. Before you enter the scan room, you will be asked questions about past surgeries, implants, etc. (When you scheduled the appointment, you might have been asked some of the same questions.)
3. When you are brought to the room (maybe before), you will have to remove anything metal or with metal components, including shoes.
4. You will be scanned with a metal-detecting wand, like at the airport.
5. They will start an IV on you. They need to give you an injection near the end of the scan. This doesn't have a metal needle in your skin, so don't worry.
6. You lie on the table. They will put pillows under your head and (possibly) parts of your body and position you. They may put a pillow between your legs, depending.
7. They will put (and secure) rectangular things on the parts of your body that need scanning. These are antennas. It doesn't hurt.
8. You will be given something to help with noise (the scan is LOUD). Many hospitals give you music via headphones, which is also how you will hear the person running the scan.
9. They give you a ball to squeeze if you need them, put pads around you anywhere your bare skin might touch the inside of the machine, and move you into it. If you are fat, this might be more uncomfortable because it is a snug fit.
*The scan is a cylinder. There is a gray stripe at the top middle. If your head is near the opening of the machine, air will blow in your face. It might feel a bit warm in there during the scan (especially around the antennas), but never like you're burning.*
10. Over the next (how many minutes) you will be scanned multiple times. The machine will whir, beep, bleat, and vibrate during the scan phases (loud and annoying barely covers it). There will be periods (brief) where the machine will be silent and still. Once and awhile, they will adjust the table you're on... slightly. You will be glad for those headphones. A good technician will tell you what is going on each time and will check on you verbally.
11. Right before the last scan phase, you will be given an injection through the IV. You might taste (or smell) metal. It shouldn't make you feel hot or anything (to my knowledge).
12. You're done! Yay!
________________________
End note: If you have chronic pain, this will be hard on you. I was crying silent tears about halfway through the ordeal. But, you will get through it. I did.
________________
Notes: Depending on what part of your body is scanned, you may have to fast.
Eyeglasses, hearing aids, jewelry, shoes, etc. will have to be removed before you get to the machine. (If you wear a bra, find one without hooks or metal stays, like a sports bra. Leave clothing with zippers, metal buttons, metallic studs at home.)
Tell them if you have a pacemaker, insulin pump, or other internal machinery because the MRI can cause them to malfunction. Tell them if you have any metal rods, pins, plates, or replacements (and about metal dental work).
If you are (or ever were) a metalworker, tell them! Shavings can get inside your body and cause havoc during an MRI scan, potentially injuring you internally.
On extremely rare occasions, pants may burn skin in an MRI machine. You may have to pull down or take off your pants before being scanned.
Tell people if you're claustrophobic. If you are, an MRI will be rough.
It might help you to have a conversation with your doctor before scheduling. Some of these things may mean you can't be scanned safely or thoroughly.
___________________
1. A technician comes into the waiting room and gives you a card to read about metal and MRI machines. Certain metals can obscure parts of you. Metals that are magnetic will be attracted to the machine... hurting you.
2. Before you enter the scan room, you will be asked questions about past surgeries, implants, etc. (When you scheduled the appointment, you might have been asked some of the same questions.)
3. When you are brought to the room (maybe before), you will have to remove anything metal or with metal components, including shoes.
4. You will be scanned with a metal-detecting wand, like at the airport.
5. They will start an IV on you. They need to give you an injection near the end of the scan. This doesn't have a metal needle in your skin, so don't worry.
6. You lie on the table. They will put pillows under your head and (possibly) parts of your body and position you. They may put a pillow between your legs, depending.
7. They will put (and secure) rectangular things on the parts of your body that need scanning. These are antennas. It doesn't hurt.
8. You will be given something to help with noise (the scan is LOUD). Many hospitals give you music via headphones, which is also how you will hear the person running the scan.
9. They give you a ball to squeeze if you need them, put pads around you anywhere your bare skin might touch the inside of the machine, and move you into it. If you are fat, this might be more uncomfortable because it is a snug fit.
*The scan is a cylinder. There is a gray stripe at the top middle. If your head is near the opening of the machine, air will blow in your face. It might feel a bit warm in there during the scan (especially around the antennas), but never like you're burning.*
10. Over the next (how many minutes) you will be scanned multiple times. The machine will whir, beep, bleat, and vibrate during the scan phases (loud and annoying barely covers it). There will be periods (brief) where the machine will be silent and still. Once and awhile, they will adjust the table you're on... slightly. You will be glad for those headphones. A good technician will tell you what is going on each time and will check on you verbally.
11. Right before the last scan phase, you will be given an injection through the IV. You might taste (or smell) metal. It shouldn't make you feel hot or anything (to my knowledge).
12. You're done! Yay!
________________________
End note: If you have chronic pain, this will be hard on you. I was crying silent tears about halfway through the ordeal. But, you will get through it. I did.
Thursday, August 24, 2017
My mask slid off (on not coping)
I knew I'd be here, after everything. I wondered what would do it: The fact that our household is short on funds this month? The realization my cancer spread farther than I thought (though radiation is still the plan)? Nope. It was chicken breasts... and Mr. Davicob's unwillingness to talk to my mother for thirty seconds on the phone.
I screamed at him. Not even a minute after, I was crying and apologizing to her and him both. Mr. Davicob just looked at me as I'm sobbing and coolly responded: "I don't think I deserved that". No, he didn't.
My mask slipped. The one I wear to lie to everyone, even myself. I felt so blissfully numb, yesterday. My entire emotional episode lasted less than five minutes. I must do better.
I tell myself I'm handling this "cancer thing" and just can't cope with anything else going wrong. But, if something tiny causes me to hit the ceiling... am I coping? Am I truly okay?
No. I'm not.
Maybe crying over chicken dinners lets me deal with my diagnosis and the feelings stemming from it indirectly. When I think of my cancer, I feel a tiny spike of fear, then numbness as though anesthetized. I just hope I can keep people from the pain of me releasing my own pain.
I screamed at him. Not even a minute after, I was crying and apologizing to her and him both. Mr. Davicob just looked at me as I'm sobbing and coolly responded: "I don't think I deserved that". No, he didn't.
My mask slipped. The one I wear to lie to everyone, even myself. I felt so blissfully numb, yesterday. My entire emotional episode lasted less than five minutes. I must do better.
I tell myself I'm handling this "cancer thing" and just can't cope with anything else going wrong. But, if something tiny causes me to hit the ceiling... am I coping? Am I truly okay?
No. I'm not.
Maybe crying over chicken dinners lets me deal with my diagnosis and the feelings stemming from it indirectly. When I think of my cancer, I feel a tiny spike of fear, then numbness as though anesthetized. I just hope I can keep people from the pain of me releasing my own pain.
Monday, August 21, 2017
And the answer is: No!
It is confirmed: I must have photo ID to stay at The Healing House. I suspected as much. Unsure which unappealing option for treatment I'll have to go with, but I'll think on that more after my scans... which are tomorrow. By the end of the week, I hope to have a plan and a clear visual of my future.
Besides calling about The Healing House, I also confirmed when my accessible transportation is arriving the next two days and emailed my primary medical provider. My Nurse Practitioner is in yet another network from either hospital I'm looking into and, because of this, she's often not in the loop on my medical issues once she refers me to a specialist. I have to keep her updated. She didn't even know I had cancer until I told her.
Anyone giggling over my hesitation to get treatment across different hospital networks really has no idea the difficulty (and possible danger) it proposes.
On an unrelated (but still exasperating) note: My tachycardia is quite prevalent, lately. I know it's worse because of stress.
Besides calling about The Healing House, I also confirmed when my accessible transportation is arriving the next two days and emailed my primary medical provider. My Nurse Practitioner is in yet another network from either hospital I'm looking into and, because of this, she's often not in the loop on my medical issues once she refers me to a specialist. I have to keep her updated. She didn't even know I had cancer until I told her.
Anyone giggling over my hesitation to get treatment across different hospital networks really has no idea the difficulty (and possible danger) it proposes.
On an unrelated (but still exasperating) note: My tachycardia is quite prevalent, lately. I know it's worse because of stress.
Sunday, August 20, 2017
Being strong
I'm not a cancer warrior. This is not a battle. You cannot cry in war, or the enemy will strike. You cannot show fear because the opposing side will slaughter you. There can be no uncertainty, no hesitation.
I will break down at some point, probably to the extreme. If I were to bet, it will take place when the side effects from whatever treatment will be at their worst. I'm already going through much without the extra issues.
Right now, I'm strong because I have to be. My husband looks at me like I'm dying before his eyes. My (very strong, quite grounded) mother's voice cracks when we talk about my disease. My older brother looks away and his voice trails off with his thoughts before a swift subject-change.
I'm unsure how people around me will handle things when I'm unable to stay stoic. My mother thinks my serenity is a facade because I let slip a fraying edge on occasion. Even a rock erodes with enough water and time. I'm aware.
But, people around me deal with everything better (though, still not amazingly) if they see me navigating through with no tears. I can try to grant them my strength. I'm (sort of, but not really) the one who made them sad in the first damn place. I hate being the reason for their distress.
I know they have my back when I need it, something a lot of people can't boast. I know I can crumble and they'd fix my pieces. But, I can give them this version of me, just for a while. Then, maybe, we can trade places or fall apart together and be reforged into better people ready for the road ahead.
I will break down at some point, probably to the extreme. If I were to bet, it will take place when the side effects from whatever treatment will be at their worst. I'm already going through much without the extra issues.
Right now, I'm strong because I have to be. My husband looks at me like I'm dying before his eyes. My (very strong, quite grounded) mother's voice cracks when we talk about my disease. My older brother looks away and his voice trails off with his thoughts before a swift subject-change.
I'm unsure how people around me will handle things when I'm unable to stay stoic. My mother thinks my serenity is a facade because I let slip a fraying edge on occasion. Even a rock erodes with enough water and time. I'm aware.
But, people around me deal with everything better (though, still not amazingly) if they see me navigating through with no tears. I can try to grant them my strength. I'm (sort of, but not really) the one who made them sad in the first damn place. I hate being the reason for their distress.
I know they have my back when I need it, something a lot of people can't boast. I know I can crumble and they'd fix my pieces. But, I can give them this version of me, just for a while. Then, maybe, we can trade places or fall apart together and be reforged into better people ready for the road ahead.
Friday, August 18, 2017
The Healing House
My local hospital is on the smaller side in Network A. The hospital I'm having all my tests done through is better-equipped and in Network B. The two hospitals don't communicate well across networks (which is why they don't even have my last name as my married one in Network B).
My local hospital (Network A) can do my external radiation treatment... possibly. I'm not sure. But, with getting my internal radiation done at the bigger hospital, I was hoping to have it all completed there. No mixed information delaying my treatment. No misreading dosages or appointments jeopardizing my health.
Since the hospital in network B is approximately a two-hour drive, I was hoping I could stay at The Healing House, a free place to stay for cancer patients receiving treatment. Mr. Davicob and I would be a lot closer to the hospital in Network B. There would be no crossed wires. I would be working toward a cancer-free diagnosis with doctors I've already met.
Researching The Healing House, I got discouraged today. You need a photo ID to get in there (and I don't have one). You can't eat in the bedroom suites (I have chronic pain and rarely exist outside of my bed, even to eat). You can't use devices on their Wi-Fi due to security risks (so, I would have to either use my wheelchair or crawl through the facility to use the Internet). The place has rules that don't accommodate someone with my issues.
On Monday, I'm going to call them with a list of questions. I doubt anything can be done to assist me with what I need. Being a disabled cancer patient is harder than most people realize since most things (even treatment and resources) are made for an able-bodied populace.
If The Healing House can't make exceptions for me, I have difficult choices ahead. Do I go with my local hospital and pray nothing gets lost between networks? Do I get transported five days a week to a closer hospital in Network B (which is still over an hour away)? Do I travel to the hospital I'm currently dealing with (which means four hours a day on the road)?
I tend to get ill if I do too much, so even going out at all on consecutive days is a severe risk.
We'll have to see.
My local hospital (Network A) can do my external radiation treatment... possibly. I'm not sure. But, with getting my internal radiation done at the bigger hospital, I was hoping to have it all completed there. No mixed information delaying my treatment. No misreading dosages or appointments jeopardizing my health.
Since the hospital in network B is approximately a two-hour drive, I was hoping I could stay at The Healing House, a free place to stay for cancer patients receiving treatment. Mr. Davicob and I would be a lot closer to the hospital in Network B. There would be no crossed wires. I would be working toward a cancer-free diagnosis with doctors I've already met.
Researching The Healing House, I got discouraged today. You need a photo ID to get in there (and I don't have one). You can't eat in the bedroom suites (I have chronic pain and rarely exist outside of my bed, even to eat). You can't use devices on their Wi-Fi due to security risks (so, I would have to either use my wheelchair or crawl through the facility to use the Internet). The place has rules that don't accommodate someone with my issues.
On Monday, I'm going to call them with a list of questions. I doubt anything can be done to assist me with what I need. Being a disabled cancer patient is harder than most people realize since most things (even treatment and resources) are made for an able-bodied populace.
If The Healing House can't make exceptions for me, I have difficult choices ahead. Do I go with my local hospital and pray nothing gets lost between networks? Do I get transported five days a week to a closer hospital in Network B (which is still over an hour away)? Do I travel to the hospital I'm currently dealing with (which means four hours a day on the road)?
I tend to get ill if I do too much, so even going out at all on consecutive days is a severe risk.
We'll have to see.
Monday, August 14, 2017
Not driving is hell when you have cancer
My appointments for my scans are set, but the van company I get my rides through is booked. It took seventeen minutes on the phone to coordinate everything and everyone. I don't want to give my cancer more time to grow than it already has, so I have to reschedule two different days close together.
Next Wednesday, I have a meeting with Dr. C. to discuss the scans, so I'm hopeful for a Monday or Tuesday scan date. Rescheduling things is upsetting to me, more uncertainty and stress when I've had enough. What other choice do I have? No other company can take me so far that exists close by.
My husband and I don't drive. We can't afford a handicapped van if we did. We are at the mercy of other elements. I'm grateful to have the access I do, but it's so difficult maintaining calm. I have to trust that everything will get where it needs to go. I have to trust... and call to reschedule tomorrow.
Next Wednesday, I have a meeting with Dr. C. to discuss the scans, so I'm hopeful for a Monday or Tuesday scan date. Rescheduling things is upsetting to me, more uncertainty and stress when I've had enough. What other choice do I have? No other company can take me so far that exists close by.
My husband and I don't drive. We can't afford a handicapped van if we did. We are at the mercy of other elements. I'm grateful to have the access I do, but it's so difficult maintaining calm. I have to trust that everything will get where it needs to go. I have to trust... and call to reschedule tomorrow.
Sunday, August 13, 2017
Radiation plan and anomaly
We woke up at 4:30 in the morning to get ready for my appointment with Dr. R. (the radiation doctor). We are not morning people, my beloved and I. Sleep didn't approach easily that night, either.
The PET scan shows an anomaly in my sternum. It's a shocking thing, like someone slapping you in the face with a frozen salmon. I am sure I don't have cancer elsewhere, I'm sure it hasn't spread. I've convinced myself of this. I don't know what to think.
I moved around during the administration of the glucose agent for the PET scan. I had terrible muscle cramps in my torso. Maybe that's what it was. Yes, yes, it must be. Movement attracts the serum, throws off the scan.
I am to have another CT scan and an MRI. Clear pictures on which to base my treatment. Will I have radiation, chemotherapy? What are my odds?
Dr. R. has outlined my radiation regimen, if I am to need it. Nine weeks of external radiation at five times a week. After, I am to receive five doses of internal radiation. He outlined the nasty side effects of treatment. But, what illness is too severe for extra sand in the hourglass?
The PET scan shows an anomaly in my sternum. It's a shocking thing, like someone slapping you in the face with a frozen salmon. I am sure I don't have cancer elsewhere, I'm sure it hasn't spread. I've convinced myself of this. I don't know what to think.
I moved around during the administration of the glucose agent for the PET scan. I had terrible muscle cramps in my torso. Maybe that's what it was. Yes, yes, it must be. Movement attracts the serum, throws off the scan.
I am to have another CT scan and an MRI. Clear pictures on which to base my treatment. Will I have radiation, chemotherapy? What are my odds?
Dr. R. has outlined my radiation regimen, if I am to need it. Nine weeks of external radiation at five times a week. After, I am to receive five doses of internal radiation. He outlined the nasty side effects of treatment. But, what illness is too severe for extra sand in the hourglass?
Friday, August 11, 2017
My Thursday (PET Scan and Dr. C.)
Mr. Davicob and I went to three different appointments on Thursday. The first two were scan/labs (the PET scan taking longer than anticipated because I need more time with bathrooming and transferring). The last appointment was for Dr. C. (the chemotherapy doctor).
I liked Dr. C. a lot, but am hoping I don't need him as my doctor because that means my cancer has spread beyond what radiation can help. He told me that Dr. S. (the surgeon) said I'm not a good candidate for surgery at all. Dr. S. merely said to me that I wasn't a good candidate until the PET Scan results came back to see if it spread. It was a bit shocking to know Dr. S. washed his hands of me completely without saying a word to me about it. A hysterectomy is often the best option with cancer confined to the uterus/cervix and now, my outcome isn't as certain.
Between needing to lie down for the PET Scan and taking painkiller at the hospital (I took some with me) I wasn't hurting as bad when I got home as I did on Tuesday, though it was still more than usual.
Sitting in my wheelchair without moving for over an hour (when the IV for the PET was administered) was a slow torture. I had spasms, and there were times I had no choice but to adjust. I did what I could.
I liked Dr. C. a lot, but am hoping I don't need him as my doctor because that means my cancer has spread beyond what radiation can help. He told me that Dr. S. (the surgeon) said I'm not a good candidate for surgery at all. Dr. S. merely said to me that I wasn't a good candidate until the PET Scan results came back to see if it spread. It was a bit shocking to know Dr. S. washed his hands of me completely without saying a word to me about it. A hysterectomy is often the best option with cancer confined to the uterus/cervix and now, my outcome isn't as certain.
Between needing to lie down for the PET Scan and taking painkiller at the hospital (I took some with me) I wasn't hurting as bad when I got home as I did on Tuesday, though it was still more than usual.
Sitting in my wheelchair without moving for over an hour (when the IV for the PET was administered) was a slow torture. I had spasms, and there were times I had no choice but to adjust. I did what I could.
Thursday, August 10, 2017
PET scan (what to expect)
I had my PET Scan today. I realize most doctors and hospitals don't tell you everything until it occurs, so I thought I'd go through the steps of a PET Scan for anyone wondering what it entails.
1. You go into a room with "mood lighting" with a bed or chair inside. The room may also have a camera.
2. They run through your medications and allergies, like every appointment.
3. Your glucose level is checked with a drop of blood. If it is below 200, the next step begins. (I don't know what they do if it's not.)
4. An IV is started, just a regular one. You are left to sit or lie still for about fifteen minutes.
5. Glucose stuff is put into your IV line. You must continue to sit or lie still... completely still*... until the Nuclear Med person comes to get you. This takes about an hour.
6. The IV is removed (lucky you!) and you are instructed to use the bathroom. The glucose stuff will settle in the urine and light up, creating a difficult (or even false) indicator on the scan. So, go if possible.
7. You are put on the machine's table and strapped in. There is positioning that goes on (they use a light guide so you'll have to close your eyes for a bit). They sometimes use pillows for your head, legs, and hands to rest upon so being stationary is more tolerable. Once they get you where they need you, do not move! For around a half an hour, different parts of you are scanned, painlessly. Unlike a CT scan, you don't have to hold your breath at any point.
8. Finished!
*Not moving is tremendously important during the IV because used muscles attract the glucose solution (much like the full bladder will) and create fake readings.
1. You go into a room with "mood lighting" with a bed or chair inside. The room may also have a camera.
2. They run through your medications and allergies, like every appointment.
3. Your glucose level is checked with a drop of blood. If it is below 200, the next step begins. (I don't know what they do if it's not.)
4. An IV is started, just a regular one. You are left to sit or lie still for about fifteen minutes.
5. Glucose stuff is put into your IV line. You must continue to sit or lie still... completely still*... until the Nuclear Med person comes to get you. This takes about an hour.
6. The IV is removed (lucky you!) and you are instructed to use the bathroom. The glucose stuff will settle in the urine and light up, creating a difficult (or even false) indicator on the scan. So, go if possible.
7. You are put on the machine's table and strapped in. There is positioning that goes on (they use a light guide so you'll have to close your eyes for a bit). They sometimes use pillows for your head, legs, and hands to rest upon so being stationary is more tolerable. Once they get you where they need you, do not move! For around a half an hour, different parts of you are scanned, painlessly. Unlike a CT scan, you don't have to hold your breath at any point.
8. Finished!
*Not moving is tremendously important during the IV because used muscles attract the glucose solution (much like the full bladder will) and create fake readings.
Wednesday, August 9, 2017
Cancer has a way of distorting
Big things become little and little things become big. No, we aren't in Wonderland. We're dealing with cancer, which distorts aspects of life I didn't think about.
I'm good at internalization. So good, my digestive system hates me and will never be anything close to "normal"... hasn't for years. I try everything I can think of to reduce stress: Breathing, listening to music, singing, reading... more. Books can take me away for a while, music helps a bit. Nothing makes a significant dent.
I need my marriage license so the hospital can copy it. Right now, they have me under my maiden name. It doesn't matter that my referral came under my married name, that I never had a record there to conflict with "new" information, that I married Mr. Davicob over a decade ago... nope. They need it, or a photo ID. I, like a lot of people who don't drive, don't have an ID. My marriage license, turns out, is missing. No real problem, just need a copy from the county.
But... my husband and I searched and searched. But... we need it for my insurance to go smoothly. But... it's another trip in a hell-fire week my body will have to endure. It will get to the hospital eventually. But...
The missing marriage license is a small thing, easy to fix. It feels huge. It can make me cry where my cancer diagnosis didn't. I'm a plate-spinner keeping twelve plates rotating when three more spring up. I can't handle more. More just keep appearing.
When I'm not overwhelmed, I try to commit various aspects of people I love to memory. My husband's beautiful eyes, the sound of my mother's voice, my brothers' laughs, my sister's sarcasm... so many things.
When I'm not overwhelmed, I go through my memories: The chirp of morning birdsong, family camping trips from childhood, meeting my husband for the first time, my grandma's gorgeously decorated cakes...
I've always done this, went through my life like I could one day lose the tiniest piece and never possess it again (though I have trouble with wanting more, ever more). There is a new urgency to remember life.
I'm good at internalization. So good, my digestive system hates me and will never be anything close to "normal"... hasn't for years. I try everything I can think of to reduce stress: Breathing, listening to music, singing, reading... more. Books can take me away for a while, music helps a bit. Nothing makes a significant dent.
I need my marriage license so the hospital can copy it. Right now, they have me under my maiden name. It doesn't matter that my referral came under my married name, that I never had a record there to conflict with "new" information, that I married Mr. Davicob over a decade ago... nope. They need it, or a photo ID. I, like a lot of people who don't drive, don't have an ID. My marriage license, turns out, is missing. No real problem, just need a copy from the county.
But... my husband and I searched and searched. But... we need it for my insurance to go smoothly. But... it's another trip in a hell-fire week my body will have to endure. It will get to the hospital eventually. But...
The missing marriage license is a small thing, easy to fix. It feels huge. It can make me cry where my cancer diagnosis didn't. I'm a plate-spinner keeping twelve plates rotating when three more spring up. I can't handle more. More just keep appearing.
When I'm not overwhelmed, I try to commit various aspects of people I love to memory. My husband's beautiful eyes, the sound of my mother's voice, my brothers' laughs, my sister's sarcasm... so many things.
When I'm not overwhelmed, I go through my memories: The chirp of morning birdsong, family camping trips from childhood, meeting my husband for the first time, my grandma's gorgeously decorated cakes...
I've always done this, went through my life like I could one day lose the tiniest piece and never possess it again (though I have trouble with wanting more, ever more). There is a new urgency to remember life.
Why wasn't I told?
Yesterday, I had a meeting with one of the best gynecologic oncologists in my state. It took approximately six weeks for the appointment (after being told it would be "a week or two"). But, if he's the best, he's probably quite busy.
The hospital he's a part of is approximately two hours from my home by vehicle. My body aches after a couple of hours of sitting in any chair... and my wheelchair is treacherous. But, if he's the best, he's probably worth it.
When my husband and I met him, he told us he has questions. I suspected this, of course, this man is going to be doing my hysterectomy (surgical cures, for the win!) so he needs to know my history. He (instead) tells me my tumor was big enough to worry about the cancer spreading and I need a PET/CT scan done.
As of this moment, I'm not a good candidate for surgery. I travelled hours to find out I need another test... waited over a month with stress and anxiety and tentative fear thinking that this consultation was the first step back to zero cancer. The cancer had six weeks to grow.
He uttered words like "radiation" and "chemotherapy"... things I was told I probably wouldn't have to consider. Things my mother didn't have to entertain when she was diagnosed (and cured) six years ago.
Tomorrow, I have my scan, blood tests, and a meeting with another doctor at the far-off hospital. Friday, I have a meeting with the Nuclear Medicine specialist. If I have too many busy days I tend to get sick, but there is no choice.
There is a new, darker fission of fear, now. Treatments making me ill for a chance to make me well. Days of chronic pain and brain fog for the opportunity to weigh my options. My brain keeps whispering what if, what if.
The hospital he's a part of is approximately two hours from my home by vehicle. My body aches after a couple of hours of sitting in any chair... and my wheelchair is treacherous. But, if he's the best, he's probably worth it.
When my husband and I met him, he told us he has questions. I suspected this, of course, this man is going to be doing my hysterectomy (surgical cures, for the win!) so he needs to know my history. He (instead) tells me my tumor was big enough to worry about the cancer spreading and I need a PET/CT scan done.
As of this moment, I'm not a good candidate for surgery. I travelled hours to find out I need another test... waited over a month with stress and anxiety and tentative fear thinking that this consultation was the first step back to zero cancer. The cancer had six weeks to grow.
He uttered words like "radiation" and "chemotherapy"... things I was told I probably wouldn't have to consider. Things my mother didn't have to entertain when she was diagnosed (and cured) six years ago.
Tomorrow, I have my scan, blood tests, and a meeting with another doctor at the far-off hospital. Friday, I have a meeting with the Nuclear Medicine specialist. If I have too many busy days I tend to get sick, but there is no choice.
There is a new, darker fission of fear, now. Treatments making me ill for a chance to make me well. Days of chronic pain and brain fog for the opportunity to weigh my options. My brain keeps whispering what if, what if.
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