Dancing With Details
It sucks to have cancer. I wish that were it. That there was just the big bad cancer wolf to deal with.
It doesn't stop there.
There is insurance. Special pharmacies. Drug side effects.
But, the $ aspect of dealing with cancer, the never ending paper work is what might kill me before the actual disease does.
And I am lucky. T handles most of our insurance. We have really good insurance. Yet, in ALL of our bills, notices, etc., there have only been a handful of times where all was accurate. Either the hospital is charging us twice for a procedure. Or for drugs that I did not take. Or, a procedure is charged to us and our insurance company questions it. It never ends. She deals with THAT part. I deal with the rest. When you have cancer, you do not simply take drugs that can be ordered from a local pharmacy. They must be ordered from places called specialty pharmacies.
Specialty pharmacies are like little ponds of hell.
I have yet to speak to a person who works at one who is knowledgeable and kind. And they are either ruthless or impossible to reach. There is no in between.
I am dealing with cancer, dudes. This is a hellish experience, anyway you slice it. The drugs that kill the cancer are almost as bad as the cancer itself. The side effects are terrible.
Mouth sores that make it nearly impossible to swallow.
Skin itching and rashes that are like dealing with 100 mosquito bites.
Stomach upset. This is a nice way to say puking. Gagging. Feeling as if you might puke and/or gag.
Diarrhea. Or constipation. Or....BOTH! Or maybe you will just feel as if you are going to have explosive diarrhea, but when you sit down on the toilet nothing comes out, so you just end up rocking back and forth.
High blood pressure. Or...low blood pressure.
Low blood counts. This means that your white blood cell count drops so low that if someone sneezes in your vicinity, you are terrified that you will catch a cold and die. Even a stubbed toe is scary because nothing heals. Your bruises have bruises.
High blood sugar. This is fun if you are diabetic.
Neuropathy. You know that feeling you get in the middle of the night when you sleep funny on your arm and you wake up and it has pins and needles? You have this in your feet and hands ALL OF THE TIME. Try brushing your teeth.
Bone pain. This sounds uncomfortable. It is not. It is unbearable.
Bloody Noses. Yes. You are the life of the party.
Some people get ALL of these side effects. Some get SOME of them. Some get NONE of them, or maybe one or two. Let's spin that wheel and see what you get, because it is exactly that random.
Besides all of this, you must deal with weekly labs to check your blood to see how you are surviving the chemo. Sometimes daily, weekly or twice weekly bags of chemo unless you are one of those of us who get oral chemo. This sounds preferable, doesn't it? But, keep in mind, if you get oral chemo, you have to deal with.....
......cut to drum roll.....
Specialty Pharmacies.
This is how the last few days have gone and I am not exaggerating:
1) Meet with oncologist on Wednesday to discuss change of treatment. My previous treatment stopped working after five months. Oncologist tells me that she really, really wants to put me on an IV chemo drug that has shown good results and has very few side effects, but alas...my insurance company will not pay for this as it is tres pricey. So, I have to endure a trial of oral chemo drugs. Unfortunately, these drugs are known to have really, really bad side effects. In fact, most people cannot tolerate them and have to be taken off of them within two months. But, hey....you must be a good sport and try them. No choice, really. Insurance WILL NOT pay unless you do this. Oncologist says that one drug can be sent to my local pharmacy and the other will be sent through a specialty pharmacy. They will both call me later on in the day.
The day goes by without a call. The next day, I call my local pharmacy. No. No prescriptions have been called in. Sorry. I call my oncologist. It is a Friday. The nurse says that the specialty pharmacy will call today. The other medication? Someone forgot to call it in. She's on it.
Later in the day, the specialty pharmacy calls. They want to send the drug right away. I tell them no. That I am going on vacation and that it can't be sent until July 15. They are not happy but comply.
The regular pharmacy doesn't call to say my other drug is ready. I really want to get this taken care of before we leave for vacation in a few days. I need this vacation like a drowning woman needs a boat. I am so in need of a vacation that I don't even care that my sister in law who will be in town on her vacation is going to house sit and see my dirty house.
It is the weekend now. I have to wait two days.
It is Monday. I call the local pharmacy. No. There has been no prescription called in. I call the oncologist's office again. This time, the nurse tells me that it has been decided that BOTH of my prescriptions will be sent to the specialty pharmacy because I have met my deductible this year and have no co-pay. I ask why this matters. It matters because my insurance company will now have to pay the outrageous cost for my new drugs and the specialty pharmacy can give them a better discount.
Ok.
The nurse tells me that the specialty pharmacy will be contacting me today. I reiterate that I am LEAVING FOR VACATION in a few days and want to get this figured out before I leave. She says, in a voice more tired than a new mother, that she understands.
She doesn't. No one does. They do this ALL DAY LONG. They are anesthetized to people like me.
The specialty pharmacy calls me. I talk to a woman named Megan. She sounds like she is 12. She asks me for the twentieth time for my full name, date of birth, and address. I repeat this again. She asks me what my decision is.
Um...WHAT?
She sighs wearily. I want to slap her through the phone. I want to tell her that I am the only one who gets to sigh here, missy. She says, "I spoke to your oncology nurse and she told me that it was up to you to either have your prescription filled by your local pharmacy or us."
I kid you not. The left hand NEVER knows what the right hand is doing in cancer treatment.
I tell Megan that I was told that I did not have a choice because I have fulfilled my insurance deductible and that it HAD to be her specialty pharmacy.
Silence. And then a slow....."Umm......okay?"
WHAT THE FUCK DO YOU MEAN "UMMM.....OKAY?" IS THIS OKAY OR NOT? I JUST NEED TO GET MY FUCKING PRESCRIPTION ORDER IN. I HAVE CANCER. I AM MORE TIRED AND WEAK THAN YOU HAVE EVER FELT, EVEN AFTER THAT TERRIBLE BENDER YOU HAD AFTER THAT ONE NIGHT WHEN YOU GOT SO DRUNK THAT YOU WENT HOME WITH A MAN WHOSE NAME YOU DID NOT KNOW.
Instead, I politely ask Megan if she is still with me.
"Umm. Yeah, I guess. So, you want us to fill this prescription?"
I want to beat my head against a wall. Instead, I say that yes, yes, that would be best.
HELL YEAH, MEGAN. I AM JUST DYING (LITERALLY) TO GET ON THAT MEDICATION THAT WILL MAKE MY SKIN ITCH AND FALL OFF OF ME, GIVE ME ACNE EVEN THOUGH I AM 61, AND MAKE MY BLOOD SUGAR SHOOT INTO THE STRATOSPHERE WHILE I PUKE MY GUTS OUT AND HAVE DIARRHEA THAT FEELS LIKE BATTERY ACID COMING OUT OF MY ASS.
Megan asks me again to verify my name, birth date, and address. I do this with my teeth gritted so tightly that I worry that they will shatter. She tells me that she sees that my other prescription is to be delivered on July 16. Would I like them delivered together?
July 16th?
I keep my voice civil. "I was told that it would be delivered on July 15th. Not the 16th. This is important because I have to SIGN for these drugs from UPS and if I am not home, we will have a whole new set of problems."
This information seems to stupefy Megan. She needs to go check the details. I wait for over five minutes. I am pretty sure that she checked 4 minutes ago and is now shooting the shit with her friends at the water cooler. She comes back and verifies that sorry....it IS July 15th.
Megan tells me that a pharmacist will call me later on to discuss side effects with me. I say okay. We hang up.
T comes in from mowing the lawn. I am crying silently in the lazy boy. I feel like an idiot telling her why I'm crying but....
For fuck sakes, WHY must this be so hard!?
T gets it. She does this dance with our insurance company nearly every week. She hugs me.
"Wanna go get some coffee?"
I smile at her. I have stomach cramps and I am so tired that walking out to the car sounds very hard. But...we have a friend from out of town coming to visit tomorrow. They want to see me and meet for coffee. And then there is the fourth of July shindig at our nephew's house. We should make an appearance. Now that I have cancer, it seems important for everyone to see me. I get it. I might kick off and they want to do their duty.
But, I am just so tired, people.
I say, yeah.....let's go get a coffee.
I truly don't know what I'd do if I had to have cancer, deal with specialty pharmacies, AND take care of insurance. I know people do it. I have no idea how.
Coffee. A simple cup of coffee.
I need this vacation so badly. Yet, the whole idea of packing up clothes and all my medications (even though I am off all cancer meds) makes me exhausted just thinking about it.
Think about the sea.
Yes. A cool ocean breeze.
I can do this.
It doesn't stop there.
There is insurance. Special pharmacies. Drug side effects.
But, the $ aspect of dealing with cancer, the never ending paper work is what might kill me before the actual disease does.
And I am lucky. T handles most of our insurance. We have really good insurance. Yet, in ALL of our bills, notices, etc., there have only been a handful of times where all was accurate. Either the hospital is charging us twice for a procedure. Or for drugs that I did not take. Or, a procedure is charged to us and our insurance company questions it. It never ends. She deals with THAT part. I deal with the rest. When you have cancer, you do not simply take drugs that can be ordered from a local pharmacy. They must be ordered from places called specialty pharmacies.
Specialty pharmacies are like little ponds of hell.
I have yet to speak to a person who works at one who is knowledgeable and kind. And they are either ruthless or impossible to reach. There is no in between.
I am dealing with cancer, dudes. This is a hellish experience, anyway you slice it. The drugs that kill the cancer are almost as bad as the cancer itself. The side effects are terrible.
Mouth sores that make it nearly impossible to swallow.
Skin itching and rashes that are like dealing with 100 mosquito bites.
Stomach upset. This is a nice way to say puking. Gagging. Feeling as if you might puke and/or gag.
Diarrhea. Or constipation. Or....BOTH! Or maybe you will just feel as if you are going to have explosive diarrhea, but when you sit down on the toilet nothing comes out, so you just end up rocking back and forth.
High blood pressure. Or...low blood pressure.
Low blood counts. This means that your white blood cell count drops so low that if someone sneezes in your vicinity, you are terrified that you will catch a cold and die. Even a stubbed toe is scary because nothing heals. Your bruises have bruises.
High blood sugar. This is fun if you are diabetic.
Neuropathy. You know that feeling you get in the middle of the night when you sleep funny on your arm and you wake up and it has pins and needles? You have this in your feet and hands ALL OF THE TIME. Try brushing your teeth.
Bone pain. This sounds uncomfortable. It is not. It is unbearable.
Bloody Noses. Yes. You are the life of the party.
Some people get ALL of these side effects. Some get SOME of them. Some get NONE of them, or maybe one or two. Let's spin that wheel and see what you get, because it is exactly that random.
Besides all of this, you must deal with weekly labs to check your blood to see how you are surviving the chemo. Sometimes daily, weekly or twice weekly bags of chemo unless you are one of those of us who get oral chemo. This sounds preferable, doesn't it? But, keep in mind, if you get oral chemo, you have to deal with.....
......cut to drum roll.....
Specialty Pharmacies.
This is how the last few days have gone and I am not exaggerating:
1) Meet with oncologist on Wednesday to discuss change of treatment. My previous treatment stopped working after five months. Oncologist tells me that she really, really wants to put me on an IV chemo drug that has shown good results and has very few side effects, but alas...my insurance company will not pay for this as it is tres pricey. So, I have to endure a trial of oral chemo drugs. Unfortunately, these drugs are known to have really, really bad side effects. In fact, most people cannot tolerate them and have to be taken off of them within two months. But, hey....you must be a good sport and try them. No choice, really. Insurance WILL NOT pay unless you do this. Oncologist says that one drug can be sent to my local pharmacy and the other will be sent through a specialty pharmacy. They will both call me later on in the day.
The day goes by without a call. The next day, I call my local pharmacy. No. No prescriptions have been called in. Sorry. I call my oncologist. It is a Friday. The nurse says that the specialty pharmacy will call today. The other medication? Someone forgot to call it in. She's on it.
Later in the day, the specialty pharmacy calls. They want to send the drug right away. I tell them no. That I am going on vacation and that it can't be sent until July 15. They are not happy but comply.
The regular pharmacy doesn't call to say my other drug is ready. I really want to get this taken care of before we leave for vacation in a few days. I need this vacation like a drowning woman needs a boat. I am so in need of a vacation that I don't even care that my sister in law who will be in town on her vacation is going to house sit and see my dirty house.
It is the weekend now. I have to wait two days.
It is Monday. I call the local pharmacy. No. There has been no prescription called in. I call the oncologist's office again. This time, the nurse tells me that it has been decided that BOTH of my prescriptions will be sent to the specialty pharmacy because I have met my deductible this year and have no co-pay. I ask why this matters. It matters because my insurance company will now have to pay the outrageous cost for my new drugs and the specialty pharmacy can give them a better discount.
Ok.
The nurse tells me that the specialty pharmacy will be contacting me today. I reiterate that I am LEAVING FOR VACATION in a few days and want to get this figured out before I leave. She says, in a voice more tired than a new mother, that she understands.
She doesn't. No one does. They do this ALL DAY LONG. They are anesthetized to people like me.
The specialty pharmacy calls me. I talk to a woman named Megan. She sounds like she is 12. She asks me for the twentieth time for my full name, date of birth, and address. I repeat this again. She asks me what my decision is.
Um...WHAT?
She sighs wearily. I want to slap her through the phone. I want to tell her that I am the only one who gets to sigh here, missy. She says, "I spoke to your oncology nurse and she told me that it was up to you to either have your prescription filled by your local pharmacy or us."
I kid you not. The left hand NEVER knows what the right hand is doing in cancer treatment.
I tell Megan that I was told that I did not have a choice because I have fulfilled my insurance deductible and that it HAD to be her specialty pharmacy.
Silence. And then a slow....."Umm......okay?"
WHAT THE FUCK DO YOU MEAN "UMMM.....OKAY?" IS THIS OKAY OR NOT? I JUST NEED TO GET MY FUCKING PRESCRIPTION ORDER IN. I HAVE CANCER. I AM MORE TIRED AND WEAK THAN YOU HAVE EVER FELT, EVEN AFTER THAT TERRIBLE BENDER YOU HAD AFTER THAT ONE NIGHT WHEN YOU GOT SO DRUNK THAT YOU WENT HOME WITH A MAN WHOSE NAME YOU DID NOT KNOW.
Instead, I politely ask Megan if she is still with me.
"Umm. Yeah, I guess. So, you want us to fill this prescription?"
I want to beat my head against a wall. Instead, I say that yes, yes, that would be best.
HELL YEAH, MEGAN. I AM JUST DYING (LITERALLY) TO GET ON THAT MEDICATION THAT WILL MAKE MY SKIN ITCH AND FALL OFF OF ME, GIVE ME ACNE EVEN THOUGH I AM 61, AND MAKE MY BLOOD SUGAR SHOOT INTO THE STRATOSPHERE WHILE I PUKE MY GUTS OUT AND HAVE DIARRHEA THAT FEELS LIKE BATTERY ACID COMING OUT OF MY ASS.
Megan asks me again to verify my name, birth date, and address. I do this with my teeth gritted so tightly that I worry that they will shatter. She tells me that she sees that my other prescription is to be delivered on July 16. Would I like them delivered together?
July 16th?
I keep my voice civil. "I was told that it would be delivered on July 15th. Not the 16th. This is important because I have to SIGN for these drugs from UPS and if I am not home, we will have a whole new set of problems."
This information seems to stupefy Megan. She needs to go check the details. I wait for over five minutes. I am pretty sure that she checked 4 minutes ago and is now shooting the shit with her friends at the water cooler. She comes back and verifies that sorry....it IS July 15th.
Megan tells me that a pharmacist will call me later on to discuss side effects with me. I say okay. We hang up.
T comes in from mowing the lawn. I am crying silently in the lazy boy. I feel like an idiot telling her why I'm crying but....
For fuck sakes, WHY must this be so hard!?
T gets it. She does this dance with our insurance company nearly every week. She hugs me.
"Wanna go get some coffee?"
I smile at her. I have stomach cramps and I am so tired that walking out to the car sounds very hard. But...we have a friend from out of town coming to visit tomorrow. They want to see me and meet for coffee. And then there is the fourth of July shindig at our nephew's house. We should make an appearance. Now that I have cancer, it seems important for everyone to see me. I get it. I might kick off and they want to do their duty.
But, I am just so tired, people.
I say, yeah.....let's go get a coffee.
I truly don't know what I'd do if I had to have cancer, deal with specialty pharmacies, AND take care of insurance. I know people do it. I have no idea how.
Coffee. A simple cup of coffee.
I need this vacation so badly. Yet, the whole idea of packing up clothes and all my medications (even though I am off all cancer meds) makes me exhausted just thinking about it.
Think about the sea.
Yes. A cool ocean breeze.
I can do this.
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