How I'm doing. I tell her oh fine, except for the fact that I received a letter from my insurance company that I call "we are sorry you are now a drug addict and p.s. we have told all your doctors on you, the gig is up" letter.
She cracked up. Noooo, stop narrowing your eyes. My sister isn't laughing at me or the fact I'm now a druggie. I meant for her to laugh. You see when I tell you that I don't pander to anyone on this blog it might be a lil fib. I pander to my sister (who I call sister) because: she gets me and my wacky sense of humor, she has the best laugh, seriously you will make stuff up to hear it too, and she understands how very badly I need to laugh at some ridiculous stuff. She and I are willing participants in the lets step back and look at this from another view point experiment.
I have talked long enough in this blog about my aversion to narcotics and the facts that my surgeries required them for after care. That if I even tried to test the waters a few days after there I was writhing in pain. Still- I haaaaaaatte them. Besides being highly addictive. Besides the fact that it's toxic for your liver. Besides the fact that they rob me of my true self. Besides the fact the pills made me itch like a loca. And (my goodness I am taking you down this path) besides the fact that each time you are handed the prescription you are reminded to have those stool softeners (eff you hydrocodone) and prune juice handy in front of anyone and everyone. Perfect. I def want to have those conversations. Fun times. Fun times.
So reason #14 why I intensely dislike narcotic medicine is in addition to all I listed above you get a I'm sorry your a druggie letters from your insurance company and please seek alternatives (I asked and begged) and here are links for help. Second page was list of all controlled substances filled in last 3 months, who gave them and how much (looking at it scratching my head-well now that you put it like that) and notice we are mailing out to everyone. Please understand that I understand why it's tracked and why they send this out. There IS an epidemic out there. Just not at Casa de Lolita.
Because I'm all about the relationship and improving it I wrote a letter back. You know they offer advice, tips and "help" so I wanted to be sure the relationship is balanced and I offer advice, tips and help.
Dear insurance company,
I received your letter of concern for me regarding my use of narcotics or as you say controlled substance. I thank you very much for thinking of me and your offer to help in my time of need.
However I'm concerned one department may not be taking to the other? Just a guess. Maybe controlled substance department can partner with the department handling customers who have been given terrible shit sandwiches with multiple surgeries and that type stuff? Surely you have departments like this. I get letters from all of you fine people.
I know, I know what your thinking hehe, I talk a lot of smack about pain meds and marijuana. It's just that-talk. The truth is I chucked the pain pills 6 days ago and didn't tell anyone and I'm just not convinced about the mowie wowie part. I like to say it to tease my almost 80 year old parents (maybe you can offer counseling about that?). Although I admit I kept the prune juice. I have gotten accustomed to the taste. It's because what I'm left after this last surgery is a few new incisions and bruises that are causing discomfort, not outright pain. Not pain that I need to "be high" to forget. As well that nerve pain I say bad words over is going to hang around sometime I'm told and it sticks it's middle finger up at anything I take so why not make peace I say.
Oh hey! Speaking of making peace instead of spending money worrying bout me and sending letters out can you agree to pay for my wigs, hairpieces and all that jazzy stuff? In return I can offer my services to find money to pay for it. I have lots of thinking time on my hands.
Your partner in eradicating addictions and saving money,
Lolita
P.S. To make you comfortable and regain trust I'm willing to submit to pee tests. A few conditions. You pay for it (I'm good on that getting more bills thing) and just for fun lets say we ALL do it. $87.23 says I have the cleanest pee around. Seriously let's do that because that's one of my co-pays and I can cross that off my list.
Thursday, December 12, 2013
Wednesday, December 11, 2013
FAQ section of the blog
Frequently asked questions and answers section of the blog
Q: Why the blog? Why such a public way to document your personal/private experience with cancer?
A: Easy way to communicate to a large group. Many who want to know a variety of things especially to answer the "how do you feel" question. Hopefully that you read the blog so on the day I blog on and on about pain and lots of eff words isn't the day you innocently ask-how are you? To protect the innocent I have to fakely answer that question and lie my azz off. I can't add lying on top of cursing to the growing list of transgressions I'm committing. To share what I call moments of-are you friggin kidding meeeee?!!?!?- that happens in the life of a cancer patient. You have an idea, but really you don't. I'm shielding you like a mother hen in my blogging. As explained to a family member, there isn't much privacy I realized early on. That I simply could not go from size va va voom to itty bitty titty committee size (yes, I said that) without way more questions, as well I'll disappear some and sound slurry when I talk. Conspiracy theories would abound.
Oddly lots of questions about my hair even though I'm constantly told it's NO big deal, it'll grow back, you'll be fine, you will look gorgeous. Blah blah blah. Mmmmkay.
Q: Are you sure your hair will fall out? Maybe it won't.
A: (blankly staring at you blinking my eyes). Listen I have a hard enough time getting myself off the island on the daily, I just don't have time to yank you off the island. You know the island. Fantasy island. (holding your hand now) Honey, that was a show in the 70's, it wasn't a real island where dreams come true. It was fake for tv. No one lives there, not even Tattoo or that guy with the Spanish accent. The type of chemo I am gonna get all of it is gonna drop off of me. Hair on my head, eyelashes, eyebrows the whole thaaaaannnngg.
Q: Are you bald yet? Or when is your hair coming off?
A: This one is mostly for my niece. When my brother and his wife told the kids the news explaining what they would see or experience her main question is-am I bald yet? When she came over during my wig party and we were alone admiring all my lip glosses she tells me she wants to see under my wig to see if my hair is still there. The same another time when I had a hat on. As of today, it's there. Week of Jan 6th it will be gone with first chemo treatment so I'm told.
Q: Are you going to wear wigs, scarves or rock a bald look? Have you decided yet?
A: I have no idea really. I think that's why this week I turned my blonde hair (almost 15 years) to the screaming-look at the elephant in the room- purple. Yup purple like. It was to see if I could walk around in the outside world while people looked at and commented (or not but wanted to) on my hair. It wasn't that easy. The second day I wore a hat. Plus I started making "I'm different friends" each place I visited. While all my life I've been used to people, strangers, always striking random conversation or talking to me (new people who hang with me find this interesting and amusing) I'm just not sure I'm all that comfy yet with instant bonding. I like to take things slow. If this confuses you talk to a pregnant women and she will tell you all about it.
Q: Can't you go on a special diet, or take herbs or xx? My friend did that. (It's always a friend never someone's momma)
Q: Why the blog? Why such a public way to document your personal/private experience with cancer?
A: Easy way to communicate to a large group. Many who want to know a variety of things especially to answer the "how do you feel" question. Hopefully that you read the blog so on the day I blog on and on about pain and lots of eff words isn't the day you innocently ask-how are you? To protect the innocent I have to fakely answer that question and lie my azz off. I can't add lying on top of cursing to the growing list of transgressions I'm committing. To share what I call moments of-are you friggin kidding meeeee?!!?!?- that happens in the life of a cancer patient. You have an idea, but really you don't. I'm shielding you like a mother hen in my blogging. As explained to a family member, there isn't much privacy I realized early on. That I simply could not go from size va va voom to itty bitty titty committee size (yes, I said that) without way more questions, as well I'll disappear some and sound slurry when I talk. Conspiracy theories would abound.
Oddly lots of questions about my hair even though I'm constantly told it's NO big deal, it'll grow back, you'll be fine, you will look gorgeous. Blah blah blah. Mmmmkay.
Q: Are you sure your hair will fall out? Maybe it won't.
A: (blankly staring at you blinking my eyes). Listen I have a hard enough time getting myself off the island on the daily, I just don't have time to yank you off the island. You know the island. Fantasy island. (holding your hand now) Honey, that was a show in the 70's, it wasn't a real island where dreams come true. It was fake for tv. No one lives there, not even Tattoo or that guy with the Spanish accent. The type of chemo I am gonna get all of it is gonna drop off of me. Hair on my head, eyelashes, eyebrows the whole thaaaaannnngg.
Q: Are you bald yet? Or when is your hair coming off?
A: This one is mostly for my niece. When my brother and his wife told the kids the news explaining what they would see or experience her main question is-am I bald yet? When she came over during my wig party and we were alone admiring all my lip glosses she tells me she wants to see under my wig to see if my hair is still there. The same another time when I had a hat on. As of today, it's there. Week of Jan 6th it will be gone with first chemo treatment so I'm told.
Q: Are you going to wear wigs, scarves or rock a bald look? Have you decided yet?
A: I have no idea really. I think that's why this week I turned my blonde hair (almost 15 years) to the screaming-look at the elephant in the room- purple. Yup purple like. It was to see if I could walk around in the outside world while people looked at and commented (or not but wanted to) on my hair. It wasn't that easy. The second day I wore a hat. Plus I started making "I'm different friends" each place I visited. While all my life I've been used to people, strangers, always striking random conversation or talking to me (new people who hang with me find this interesting and amusing) I'm just not sure I'm all that comfy yet with instant bonding. I like to take things slow. If this confuses you talk to a pregnant women and she will tell you all about it.
Q: Can't you go on a special diet, or take herbs or xx? My friend did that. (It's always a friend never someone's momma)
A: Shut your pie hole and go please (pointing at the door) no worries we are still friends but we are on a break.
Q: What do you do most of the day now?
A: Lots of doctor/surgeon/test visits. A get up and get out of the house doc visit is an exhausting day. I walk slower so getting around takes up time. I stare at my nails or the walls because staring at the walls didn't make me use my arms causing pain. I focus on healing, how will I handle what's next. Because I doze off when I'm doing this I have to start all over again when I wake up. I take pictures of my dog. I send pictures & emails to friends/family of incredibly stupid silly stuff. Then when they don't respond in 30 seconds I call them to be sure their phone isn't broke. I'm very busy.
Q: Do you have good insurance or insurance at all?
A: Yes, Hercules has insurance which covers me. Quite a few places tell me: you have the good insurance. Still it doesn't cover everything and we have 20% co pays for things. I have this process: receive mail, snort sorta maniacally laugh at the figures, fan myself with some, categorize and label: Pay right away category or the special category I call "they will send Carmen and the boys after me" or "kiss my grits till I get to it". It's all fine and I always find my way.
Q: So you really don't sit around crying?
A: No I sure don't. Sometimes I think maybe I should because I'm asked so much. Like I worry I'm suppressing deep emotions. So I make a cry face then it doesn't happen then I worry that will cause wrinkles so I stop. What does make me cry at times is when I receive unexpected gifts or unbelievable generosity from the most unlikely sources, sometimes people I don't know or didn't expect to reach out. And just the generosity and spirit of my entire family. That and when my friends or family make me laugh so hard I cry or pee my pantalones.
Q: So um, what size will your new boobs be?
A: When you send out the invite to the "let's talk about our boob size and show our boobs party" with accept or decline for me to check either, I shall promptly cross it out and write in--hell naw in bold letters and fedex it back to you. To be sure you get it back as soon as possible.
Q: Do you really say bad words that much?
A: During the worst of the nerve pain, after surgery pain time and during the time that infection was brewing (it made sections of my body hurt SO bad)- oh yes, I cussed my tail off. I simply could not help myself and couldn't believe myself. You will be proud to know that my mantra prayer is the Hail Mary. Always has been and runs through my head daily so there are times I yell out---pray for us sinners! Or great balls of fire! Or instead of can of beans just omg BEANS!! I have no idea why on that last part.
Q: What do you do most of the day now?
A: Lots of doctor/surgeon/test visits. A get up and get out of the house doc visit is an exhausting day. I walk slower so getting around takes up time. I stare at my nails or the walls because staring at the walls didn't make me use my arms causing pain. I focus on healing, how will I handle what's next. Because I doze off when I'm doing this I have to start all over again when I wake up. I take pictures of my dog. I send pictures & emails to friends/family of incredibly stupid silly stuff. Then when they don't respond in 30 seconds I call them to be sure their phone isn't broke. I'm very busy.
Q: Do you have good insurance or insurance at all?
A: Yes, Hercules has insurance which covers me. Quite a few places tell me: you have the good insurance. Still it doesn't cover everything and we have 20% co pays for things. I have this process: receive mail, snort sorta maniacally laugh at the figures, fan myself with some, categorize and label: Pay right away category or the special category I call "they will send Carmen and the boys after me" or "kiss my grits till I get to it". It's all fine and I always find my way.
Q: So you really don't sit around crying?
A: No I sure don't. Sometimes I think maybe I should because I'm asked so much. Like I worry I'm suppressing deep emotions. So I make a cry face then it doesn't happen then I worry that will cause wrinkles so I stop. What does make me cry at times is when I receive unexpected gifts or unbelievable generosity from the most unlikely sources, sometimes people I don't know or didn't expect to reach out. And just the generosity and spirit of my entire family. That and when my friends or family make me laugh so hard I cry or pee my pantalones.
Q: So um, what size will your new boobs be?
A: When you send out the invite to the "let's talk about our boob size and show our boobs party" with accept or decline for me to check either, I shall promptly cross it out and write in--hell naw in bold letters and fedex it back to you. To be sure you get it back as soon as possible.
Q: Do you really say bad words that much?
A: During the worst of the nerve pain, after surgery pain time and during the time that infection was brewing (it made sections of my body hurt SO bad)- oh yes, I cussed my tail off. I simply could not help myself and couldn't believe myself. You will be proud to know that my mantra prayer is the Hail Mary. Always has been and runs through my head daily so there are times I yell out---pray for us sinners! Or great balls of fire! Or instead of can of beans just omg BEANS!! I have no idea why on that last part.
Tuesday, December 10, 2013
Today a friend sent me a message
It was a simple message with a few words of encouragement and wishes. It lifted me up a great deal. I'm always struck and left with the realization we will never ever know just how much tiny gestures we do can mean to another person on any given day. Just how powerful we really are. I've always used a silly phrase: I use my powers for good. Meaning that I put a best foot forward to use my words to or towards another for good. I try this everyday and then reset and then try again. How amazing to get this back to me, unexpectedly.
Unexpectedly for reasons I have not known this person for very long. What a nice surprise to know they thought of me enough to send a simple message. Also because before I took leave to do my cancer battle with my nunchucks and high heels (as I draw in picture form in my cards I send out) I had a conversation with this person about some tough times they are having in their life as well. We all have something terrible or tough we need to face from time to time. I am so painfully aware of that fact. I guess it's how we face it is the true determining factor how you will get through each day that defines you as a person. And this amazing person spends a great deal of their day laughing and making others do the same just by being themselves. I can testify as the message they promptly sent me back had me indeed laughing out loud, very loudly. Deciding in advance how we will face tough times isn't something we can always plan out. You stumble along, tripping around, somewhat blindly like, hands out in front feeling your way while stubbing your toes on things you didn't foresee. And then finally just figure it out. Sometimes though the stuff keeps coming. In a big dump truck with that loud beep- beep sound you hear as it's backing up at your front door. You hear the truck and the song from that old show Cops starts running through your head. "Whatcha gonna do, whatcha gonna do when they come for you". This figuring out how you are going to behave part starts from the moment they hand you the shit sandwich at the shit sandwich shop. Don't go there on purpose. Ever. Their product is horrible and costly.
As I go out in public on my little journeys these heal get better soon days I have a new set of eyes. During quick jaunts to the doctors, pharmacy/tests I view people I see out and about differently now. I sometimes wonder which of the people I come across are in crisis, you know "holding the sandwich" or pain that was covered up with a cute hat, lipgloss or in my friends case-laughter. We might never know, will we?
So besides telling this person how very happy I was to receive their message and how very badly I wished the same they did. To a fervent degree. The wish was that I heal fast and be 100% soon. I also asked them to please take care. To do all they can to be strong in their mind as well as their body for all they must face on a daily basis. It was my wish back and sort of plea. Because I converse in Spanish more often than English with this lovely person our conversation today was in Spanish.
I finished my message with some words I'll share here.
Cada dia tenemos que ser.......
Positivo
Fuerte
Carinoso
Alegre
Listo
Lleno de fe y amor
Tambien gracioso o chistosos--- hehe :)
Everyday we must be.....
Positive
Strong
Loving
Cheerful
Ready or clever
Full of faith and love
Also witty and funny :)
Clearly this person needs no lessons from me on that last part.
Unexpectedly for reasons I have not known this person for very long. What a nice surprise to know they thought of me enough to send a simple message. Also because before I took leave to do my cancer battle with my nunchucks and high heels (as I draw in picture form in my cards I send out) I had a conversation with this person about some tough times they are having in their life as well. We all have something terrible or tough we need to face from time to time. I am so painfully aware of that fact. I guess it's how we face it is the true determining factor how you will get through each day that defines you as a person. And this amazing person spends a great deal of their day laughing and making others do the same just by being themselves. I can testify as the message they promptly sent me back had me indeed laughing out loud, very loudly. Deciding in advance how we will face tough times isn't something we can always plan out. You stumble along, tripping around, somewhat blindly like, hands out in front feeling your way while stubbing your toes on things you didn't foresee. And then finally just figure it out. Sometimes though the stuff keeps coming. In a big dump truck with that loud beep- beep sound you hear as it's backing up at your front door. You hear the truck and the song from that old show Cops starts running through your head. "Whatcha gonna do, whatcha gonna do when they come for you". This figuring out how you are going to behave part starts from the moment they hand you the shit sandwich at the shit sandwich shop. Don't go there on purpose. Ever. Their product is horrible and costly.
As I go out in public on my little journeys these heal get better soon days I have a new set of eyes. During quick jaunts to the doctors, pharmacy/tests I view people I see out and about differently now. I sometimes wonder which of the people I come across are in crisis, you know "holding the sandwich" or pain that was covered up with a cute hat, lipgloss or in my friends case-laughter. We might never know, will we?
So besides telling this person how very happy I was to receive their message and how very badly I wished the same they did. To a fervent degree. The wish was that I heal fast and be 100% soon. I also asked them to please take care. To do all they can to be strong in their mind as well as their body for all they must face on a daily basis. It was my wish back and sort of plea. Because I converse in Spanish more often than English with this lovely person our conversation today was in Spanish.
I finished my message with some words I'll share here.
Cada dia tenemos que ser.......
Positivo
Fuerte
Carinoso
Alegre
Listo
Lleno de fe y amor
Tambien gracioso o chistosos--- hehe :)
Everyday we must be.....
Positive
Strong
Loving
Cheerful
Ready or clever
Full of faith and love
Also witty and funny :)
Clearly this person needs no lessons from me on that last part.
Saturday, December 7, 2013
I start with some borrowed words today
I read something this morning from Dr. Wayne Dyer about happiness. He writes:
St Francis shows us how to be happy. The secret of happiness from St Francis of Assisi
You come into this world with nothing and you leave with nothing. The only thing you can do with your life is give it away. This is the true essence to feeling purposeful.
"Lord, make me a channel of thy peace.
...that where there is sadness, I may bring joy"
From the Prayer of St. Francis
I have done lots of reading about and by these two men throughout my life. Both at different times or another have brought me incredible amounts of comfort, peace, self understanding, acceptance and just purpose. In fact the book by Dr. Wayne Dyer called The Power of Intention was practically life changing for me many years ago. I have a worn copy close by that I may open from time to time reading words I know so very well. The same goes for the St. Francis prayers (amazing simple words about love, peace and light). I don't even look, I just open and read whichever or whatever is right in front of me. And sure enough very often happens to be exactly what I very much needed to hear at that exact moment. Coincidence?
Oh that cancer lady is getting weird talking about strange things, I think she's cracking with the thought of being bald soon or the pills and the cursing!!! (You yell out over your shoulder)
The reasons I wanted to share this with you was in an earlier blog I posted something about thoughts and watching them with care as from thoughts often forms words and then habits. It's why that little snippet from the prayer of St Francis means so much.
Bring sadness to joy he says. Oh sure sounds easy we snort. But what I know to be true is I'm so lucky to have a lot of that in my life. Especially now. Please hear me that I'm not that person that says false words of I'm soooooo blessed or jeepers imma a lucky gal blah blah blah. Nope neh. Trust me I don't. First off I don't use that word jeepers or shucks. Second point is If I don't tell you your baby is cute it is def cuz I don't think it is. Sorry. The end. Once long ago I told nurse muneca that a baby everyone was saying is cute was ugly and she said oh my goodness jew stop that, jew don't say that, he's cute. I crossed my arms and said well I'm not saying that.
The truth is during times of stress, sadness or struggle I have incredible amounts of joy. It is not a false front presented, then the door closes while I turn around sobbing sliding down with my back to the door. Doesn't happen.
Is it because I happen to be born into a family and surrounded by fun wisecrackers or people who are funny, ready to laugh? Is it because of my refusal to become totally mature? Is it because I internally process terrible or serious things in the way I do and laugh inappropriately or irreverently? Who knows I shrug. Please note: do NOT take the time to respond below with your thoughts on my immaturity trying to be helpful and answer. These "questions" require NO answers, I repeat NO answers, kindly remove your fingers from the keyboard.
Then (goodness gracious) I made some coo coo for cocoa puffs decision to actually document thoughts here publicly for all to bear witness? I don't try to write this blog pandering to a supposed reader. Why would I do that?? I say boobs like 10 gajillion times. How embarrassing. The truth is to get the words out at all and press publish before I delete is I use Jedi mind tricks. Telling myself don't worry Lolita no one is reading, no one will see this girl, go ahead and say that. And it works. Jokes on me when quite a few people or friends message me privately to say girlfriend that entry was killing me! Or omg you are too much! I silently die inside remembering that hehe oh yea I did write that. Woops.
So I will gladly testify that where there is sadness those who bring me joy lift me up. That when you tell me I'm positive, I believe the only thing I'm positive about is when you laugh, I laugh. That and if you fall I'm def laughing (terrible, terrible!!). When you tell me I'm brave the real truth is imma chicken who is scared of the dark, smelly things, and extreme awkwardness to a degree I want to run from it while saying feet don't fail me now. I only borrow my courage from others who I see with real daily struggles. That and I tell myself to get over myself. A lot.
Thursday, December 5, 2013
I realize I've been dancing around
A few things these days. Not physically of course. I can't, I'm an invalid. Or that's the phrase I use at the pharmacy when the lady with short arms can't reach over to my car to get my prescriptions nor can I in anyway do that stretch reach thing. Painful and not allowed. I'm sorry, I'm invalid is there someone who can help? It's much easier than to get into the whole long sorry story. Besides a girl has to maintain mystery these days.
The dancing I'm referring to is about the upcoming chemotherapy part. That I hadn't talked about. Until now. I say the word with an extreme look of distaste on my face, a semi frown (I don't ever do full frowns they can cause wrinkles) and a middle finger ready to salute. That's how I feel about that. Well much more but I do try to keep my foot in the may get to heaven someday door.
Each different doctor I bring certain people for a few reasons. Their energy/vibe or humor, their physical ability to keep me from running out the door and the questions they may ask because as we well know I'm not the most focused these days until they start saying the words here's how it will look in the end. So for oncology visits it's always the same. Me, my brother and Hercules.
The after surgery visit to my oncologist is an important one. I had previously been to see Dr. GQ with my crew. (No I'm not trying to rap). That first visit was to review lab results for his thoughts on chemo before surgery or move onto surgery. Cleared for no chemo prior, surgery first.
I say Dr. GQ because thats what my brother calls my oncologist. He is a well respected doctor, a very dignified man with a calm aura, low speaking voice who has been doing what he does for many years. And he wears very nice suits. Because of the way he talks I sometimes expect him to say Lolita San this is what you must do. Lolita San this is why we need to do this. Quite different from my other doctor or hospitals visits where shenanigans may occur.
So here we all are a few weeks after surgery in his patient visiting room. He goes over the pathology report. Clear margins. Good. A couple lymph nodes removed (not all) and nothing there. Ok good. I'm fine, you're fine, we're all fine. Peace out. Drops mic. Buh bye. Not so fast Lolita San.
You see there are a few things I keep being told during all my visits, which has determined my course of action concerning surgery and now my chemo treatment plan. It's the type of cancer I have. Once again please take note: anything medical I say is what I understand that's happening to my body, everyone is different. I have the attention span and maturity of a 14 year old, I take lots of drugs now and soon apparently marijuana so do not repeat what I say medically. You could possibly look like a dum dum and it's not my fault. I have excuses. You don't.
Start at the very beginning. Doctors view pathology reports with several factors. I have what's called invasive ductal carcinoma. Most women who have this terrible disease will get this kind. I have a family history. And I am considered young (stop snickering-seriously I will kick you). I have heard it 10 times now. Once I looked at my brother who is very helpful by reminding me I'm older and said "howdya like that bro she says I'm young". Although I have been a reluctant $& year old for some time (oh woops sorry about that, I'll get my number keys fixed) it's just well the novelty wears off soon about the fact that I'm "young". Apparently not the best thing in this scenario.
Other important part: I have fuck face triple negative cancer (oh dear she's cursing and she used that f word). That my dears is where I might divide in the road with a person's friend, aunt, sister or anyone we know with breast cancer. That they were able to do this or that in their treatment or they did this surgery and they are fine or they take pills or not have to chemo or why do you have to have chemo? Or why aren't you taking those pills? Why can't you eat tumor shrinking food? Or see this healer In Brazil? My loved ones, I say to you with the heaviest heart that you will never ever have any idea how very much I have struggled internally over everything. Grappled with decisions to move into acceptance and action. And that is why my brother goes with me to oncology visits. To keep me honest. Because in the parking lot after when talking to him I do tap dances. He gently helps me move into reality. He is the face of my family looking at me lovingly telling me I must do all I can do at this moment. Especially chemo, toxic chemo. So of course I wish so very badly any or all of the above could be true. That I would have an easier road that allows me to live in peace, that allows my family peace that we did all we could. That I would not need to look over my shoulder for the next 30-40 years. It is the single most frustrating thing that has ever happened in my life. It can sometime seem I don't get much say in how I would like to move forward.
Because some years ago smart people discovered not all breast cancers are the same. Triple negative means I don't have the estrogen or progesterone receptors typically treated with pills. Triple negative likes it's ass to be kicked with chemo. Sometimes a lot. It's a more rare type. Like 1 million women with breast cancer (how terrible, really terrible) only 15% or around 150,000 women have it. It tends to favor African American/Latina women and it likes them young. How nice. Sounds like a real asshole.
So my cancer is considered an aggressive type cancer with slightly higher chance to return in other ways, like in my bones my liver or my brain. And those Lolita San are not curable my doctor tells me. I know because I asked him. I asked my family to pretend they were not in the room and that I'm joking but what if-WHAT IF I decide not to do chemo doctor? Doctor seemed ready for my question and calmly listed those reasons I have heard over and over. Because I need numbers, I really do, I ask him to rephrase it for me that way. He again has his homework done and tells me if I choose not to do this treatment plan that it's a 30% chance or likely cancer may return to my body in those uncurable ways. Silence. I'm proud of my brother who held his words until then and finally calmly said, loleets, this is just too high. And if I do the chemo, what then I ask as I pinch the spot between my eyes. Likely to reduce down to 5 to 10%. And that's still too high my brother says.
It happened that I knew before surgery I was stage 2 cancer, grade 2, I knew the tumor size was considered a little bigger. It was a new area of concern not on previous mammograms exams going back over 10 years. I also happen to know and been told several times that Dr Jones, my radiologist saved my life. Had I not followed a sequence of events I did, had she not stopped, and caught it in another year I could have easily been stage 4. Let's take a moment there. It's enough to digest and I know you have to catch up to me as I've been with this in my head and heart for some time, along with some family members.
Stages I'm told aren't as important as size (unless it's stage 4) and then size isn't as important as how it behaves in your body. Like what is it doing and where is it going? Mine was a acting a fool but caught early enough. So the reasons why my chemo recommendations are more and longer than I hoped. Instead of a few rounds and a few months it will be 16 or more rounds and 6 to 8 months if my body allows. Then more surgeries.
It happened that I knew before surgery I was stage 2 cancer, grade 2, I knew the tumor size was considered a little bigger. It was a new area of concern not on previous mammograms exams going back over 10 years. I also happen to know and been told several times that Dr Jones, my radiologist saved my life. Had I not followed a sequence of events I did, had she not stopped, and caught it in another year I could have easily been stage 4. Let's take a moment there. It's enough to digest and I know you have to catch up to me as I've been with this in my head and heart for some time, along with some family members.
Stages I'm told aren't as important as size (unless it's stage 4) and then size isn't as important as how it behaves in your body. Like what is it doing and where is it going? Mine was a acting a fool but caught early enough. So the reasons why my chemo recommendations are more and longer than I hoped. Instead of a few rounds and a few months it will be 16 or more rounds and 6 to 8 months if my body allows. Then more surgeries.
While I may not like or care for all that life has given me from time to time to struggle with. What I have always known is that I'm never alone. None of us are.
Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus.
Thessalonians 5:16-18
Wednesday, December 4, 2013
When you say you are tired exactly
How tired is tired is the question two of my doctors have asked me this week because that's my main complaint besides some expected discomfort a week out of surgery. Of course we want to ensure I heal quickly and as expected from my second surgery in less than a month. However my energy levels and how tired I am is a big deal to me and to them as it gives indications on how well I really am doing. As such it warrants investigation and at least a few minutes of discussion. People throw that tired word around quite a bit or we tend to say wow I'm so exhausted. We just do. It has become part of our vernacular to a degree that when we really are it could be hard to discern just how tired is tired. Well I usually don't say that and most of the time feel pretty good so when I say I gotta sit down and take a break because I'm standing for 4 minutes or that I have to prop my head up to eat a little something I wasn't even hungry for in the first place or basically my days are spent either sleeping or wanting to sleep after I just slept some. I know that might be something to bring to my doctors attention. Is there something I can do or not do? Or maybe this is something I ride out for x period of time? Either way I want to know. As you read this you might think (in your high sweet voice I always imagine) well that poor cancer lady needs to rest, goodness gracious she should be tired. Sure, I get it and I agree. And also I get that I need some teeny weeny energy to be able to eat or want to eat. I need energy to be able to get up and walk around a little bit to keep blood flowing avoiding further complications with blood clots, and finally I need a lil get up and go to be able to stay somewhat connected and remain sane.
Basically my loved ones after talking with my doctors it seems I have been handed a straight up "can of azz whuppin". You know that can? The one you got lying around just in case someone is being so ridiculous making you so cranky that you start shaking your arm until someone asks you- what ARE you doing??? And you say oh yea, hold up, I'm shaking up this can of azz whuppin I'm about to lay down. Yup, like that. Like a yea-no, lay down, just where do YOU think YOU goin type of whuppin. Like super duper can of whuppin that I'm slow slurry talking now and I'm not even taking things that would make me do so. It's just my tongue weighs 20 pounds and makes me, well, tiiiiirreeeddd.
Three surgeries in less than three months, being put under anesthesia each time, pain pills and other pills I have never taken, an infection where my body had to use everything I had to fight off plus throw in some mental processing has led me to have one of the toughest weeks in my life in terms of not being able to move my body a few inches to the right some days. I am not fighting it. So calm yourselves thinking I'm trying to do kungfu fighting moves to get up. Not the case at all. I rest and then I take another rest after that rest. I just want to know how long the rest and rest again thing might last. And what's "normal". Quotation marks for normal because none of this is. At all.
Because I'm so very lucky and blessed to have loved ones who care and want to know how I am or what's next I'm taking advantage of a moment after a doctor visit where I am upright and ate something to write out what jumbling around in my head and next steps. Thank you to the many who reach out to me personally through calls, texts (I'm never gonna tell you what the doctor said in text, sorry not gonna do it) Facebook messages and emails asking what's next or just to send me silly pictures of animals because they know that makes me laugh.
First up is get well from all this I got going on (gesturing all around my chest area). These new incisions and bruises must heal. The original healing process has been delayed because of the second surgery. And I must be absolutely clear of any sign of infection and that's not 100% as of today. Once my two surgeons talk this afternoon I'll know if I take oral antibiotic, just slather it right on topically or continue stare at walls and rest thing. We will see.
The next two or three weeks will be lots of doctors visits (surgeons, oncologist and cardiologist) and back to the hospital. Why? Because after I heal and get better-relatively speaking- I get to look forward and prepare for punk azz bitch face chemo. It seems you must be better before you can have your azz handed back to you in this cray cray cancer world I live in these days. A blog entry right after this one coming about my chemo, my thoughts on it and more exact details. Beware, it's raw. The hospital outpatient procedure is to put a chemo port in me as they don't use IV each time. It's put into my chest by my heart. Mmhmmmm. And we can't do that fun stuff until I do this sleep, heal, sleep some more recover thing.
Because I'm not allowed to take ibuprofen due to upcoming port procedure the only thing for pain I can take is hydrocodone narcotic type stuff or Tylenol. My pain laughs at Tylenol. My nerve pain sticks it butt out and pulls it's pants down at over the counter Tylenol. But take narcotics? Ask me what I think about that and I make a sound that sounds like a fart. No words, just a sound. I usually only take it at night to sleep with less discomfort, even then I forget. Hercules (my boyfriend-please catch up on other blog entries to make me stop saying this word at my age) hears me moving around in the dark all awkward and quietly lovingly asks me if I took anything. I tell him no. Then I offer him a dollar if he can get it for me because It will take me 20 minutes to get back up into sit position, reach to my left to grab one and slurp down some water. No need, he's usually on his way to get it before I'm finished with my pathetic bribe. In any case I told my surgeon today that I don't wish or want anyone else touching me, opening me up putting things in me or taking things outta me until I'm 10000% better and she agreed. So that has to get pushed out some.
Heal and wait is the short answer if you were smart to just skip to the bottom. :)
Basically my loved ones after talking with my doctors it seems I have been handed a straight up "can of azz whuppin". You know that can? The one you got lying around just in case someone is being so ridiculous making you so cranky that you start shaking your arm until someone asks you- what ARE you doing??? And you say oh yea, hold up, I'm shaking up this can of azz whuppin I'm about to lay down. Yup, like that. Like a yea-no, lay down, just where do YOU think YOU goin type of whuppin. Like super duper can of whuppin that I'm slow slurry talking now and I'm not even taking things that would make me do so. It's just my tongue weighs 20 pounds and makes me, well, tiiiiirreeeddd.
Three surgeries in less than three months, being put under anesthesia each time, pain pills and other pills I have never taken, an infection where my body had to use everything I had to fight off plus throw in some mental processing has led me to have one of the toughest weeks in my life in terms of not being able to move my body a few inches to the right some days. I am not fighting it. So calm yourselves thinking I'm trying to do kungfu fighting moves to get up. Not the case at all. I rest and then I take another rest after that rest. I just want to know how long the rest and rest again thing might last. And what's "normal". Quotation marks for normal because none of this is. At all.
Because I'm so very lucky and blessed to have loved ones who care and want to know how I am or what's next I'm taking advantage of a moment after a doctor visit where I am upright and ate something to write out what jumbling around in my head and next steps. Thank you to the many who reach out to me personally through calls, texts (I'm never gonna tell you what the doctor said in text, sorry not gonna do it) Facebook messages and emails asking what's next or just to send me silly pictures of animals because they know that makes me laugh.
First up is get well from all this I got going on (gesturing all around my chest area). These new incisions and bruises must heal. The original healing process has been delayed because of the second surgery. And I must be absolutely clear of any sign of infection and that's not 100% as of today. Once my two surgeons talk this afternoon I'll know if I take oral antibiotic, just slather it right on topically or continue stare at walls and rest thing. We will see.
The next two or three weeks will be lots of doctors visits (surgeons, oncologist and cardiologist) and back to the hospital. Why? Because after I heal and get better-relatively speaking- I get to look forward and prepare for punk azz bitch face chemo. It seems you must be better before you can have your azz handed back to you in this cray cray cancer world I live in these days. A blog entry right after this one coming about my chemo, my thoughts on it and more exact details. Beware, it's raw. The hospital outpatient procedure is to put a chemo port in me as they don't use IV each time. It's put into my chest by my heart. Mmhmmmm. And we can't do that fun stuff until I do this sleep, heal, sleep some more recover thing.
Because I'm not allowed to take ibuprofen due to upcoming port procedure the only thing for pain I can take is hydrocodone narcotic type stuff or Tylenol. My pain laughs at Tylenol. My nerve pain sticks it butt out and pulls it's pants down at over the counter Tylenol. But take narcotics? Ask me what I think about that and I make a sound that sounds like a fart. No words, just a sound. I usually only take it at night to sleep with less discomfort, even then I forget. Hercules (my boyfriend-please catch up on other blog entries to make me stop saying this word at my age) hears me moving around in the dark all awkward and quietly lovingly asks me if I took anything. I tell him no. Then I offer him a dollar if he can get it for me because It will take me 20 minutes to get back up into sit position, reach to my left to grab one and slurp down some water. No need, he's usually on his way to get it before I'm finished with my pathetic bribe. In any case I told my surgeon today that I don't wish or want anyone else touching me, opening me up putting things in me or taking things outta me until I'm 10000% better and she agreed. So that has to get pushed out some.
Heal and wait is the short answer if you were smart to just skip to the bottom. :)
Thursday, November 28, 2013
I'm pretty sure your lovey isn't like my lovey
The Lovey in question here is my daughter. That's what I call her because I'm her mama and allowed to make up names she might not like so much.
Yesterday for "operation get dead rats outta my left boob side" lovey was right there. To help me out the door (member I'm slow) waiting for me to take selfies. To accompany me making sure I don't flee the scene, to stick around for hours in a boring hospital waiting, to reassure me many times in her calm lovey voice that I don't stink like a dead rat. This she reassured me of several times. I know because I would open up my shirt or if I happened to even move my head in that direction I would yell out to say urrgghhh or bleeee or dee sgusting!!! Then ask each time lovey! are YOU sure lovey??!!
Yes, mama I'm sure she would reply. No, mama you don't smell or no, mom you don't smell like a dead rat. That last reassurance was because I asked her to be specific. She has a special voice for me when I ask her things. Some serious, silly or downright childish entirely due to who I am and always have been as a person. It's the voice I'm perfectly aware she will use when I'm old, at the sunny shades nursing home and I tell her that Bertha down the hall is stealing my chocolate that I don't like Bertha because she's smelly and I'm sure she doesn't brush her teeth. She will use that kind loving patient voice then as she does now.
Before we went off we stayed a moment in the parked car. I looked at her to ask her to make some promises to her mama. Because I wanted to be absolute sure about viral videos or repeating silly stories of me loopy I tell her: lovey no videos right? She laughs. no mama no videos. For added emphasis I touch her arm gently, pat it and say: we must be united in this front my daughter. ( ya know in case she forgets I'm her mama) or if the situation is so daing funny all bets are off with me yelling dead rats dead rats after surgery and she needs proof it happened. Again she reassured me.
Oh my gosh, why would that lovey girl or anyone in her family do that to this poor women with "the cancer"??? I imagine you saying in your high very sweet all naive voice as you read this.
Well my folks its because I have been laughing my ass off for over 20 years when: people's pants fall down accidentally (yea right), when they fall or smack into doors or glass doors or just trip over stuff. I beg and implore those whom I love dearly to never ever do stuff like that or fall around me. I am that person who will laugh, I am that person who might or might not even try to hide the terrible fact I am laughing, then straight up do a sorta snort laugh cough while asking are (laugh) you (snort laugh) ok?!? I may even have told a few stories of when lovey came out of sedation about things she said. I'm just an inappropriate laugher, one day I shall pay dearly for it but am hoping it wouldn't be day of surgery. Hence my need for reassurances.
Once when a family member walked into a glass door I laughed for like an hour, I wasn't alone in laughing though but I'm sure I was alone in the fact that days later I would recall the image and bust again laughing. Yuuup, write that down people. Lolita swears like a sailor/truck driver and laughs when people could be hurt. I'm not proud of this I'm just saying and helping you understand where my concerns are coming from.
Well my Lovey my dear daughter true to the wonderful person she is never once did any such thing and or even hinted at it.
With nurses checking me in, noting my vitals it got pretty silly, you see I have been at that surgery center more than a few times now, I have some gals who enjoy me and we laugh and laugh while they do their Lolita check in. During serious question part I see a handsome very well dressed man in a suit walk by I interrupt nurse to ask...oh my who is that?! The nurse 2 who attempting an IV insertion at that time said who who??! While she pushes curtains back to look. Nurse 1 without missing a beat says out loud oh Doctor such and such, my patient would like to meet you. Delicious man in suit comes over to meet me, shake my hand while I say wow you look like you smell good. He laughs and says what do you need done, I'll do it looking me up and down joking. He's a plastic surgeon so nurse 2 says oh I'm sure we will think of something. Meanwhile at nurse station behind him gathers a crowd to peer over at this scene. When he leaves I say to nurse 1 really? You stinker. She cracks up at me saying to him that he must smell good and there it goes for the hour they finish checking me in. Patients and nurse or assistants peer over often to look at what is so daing funny in our little bay.
Yesterday for "operation get dead rats outta my left boob side" lovey was right there. To help me out the door (member I'm slow) waiting for me to take selfies. To accompany me making sure I don't flee the scene, to stick around for hours in a boring hospital waiting, to reassure me many times in her calm lovey voice that I don't stink like a dead rat. This she reassured me of several times. I know because I would open up my shirt or if I happened to even move my head in that direction I would yell out to say urrgghhh or bleeee or dee sgusting!!! Then ask each time lovey! are YOU sure lovey??!!
Yes, mama I'm sure she would reply. No, mama you don't smell or no, mom you don't smell like a dead rat. That last reassurance was because I asked her to be specific. She has a special voice for me when I ask her things. Some serious, silly or downright childish entirely due to who I am and always have been as a person. It's the voice I'm perfectly aware she will use when I'm old, at the sunny shades nursing home and I tell her that Bertha down the hall is stealing my chocolate that I don't like Bertha because she's smelly and I'm sure she doesn't brush her teeth. She will use that kind loving patient voice then as she does now.
Before we went off we stayed a moment in the parked car. I looked at her to ask her to make some promises to her mama. Because I wanted to be absolute sure about viral videos or repeating silly stories of me loopy I tell her: lovey no videos right? She laughs. no mama no videos. For added emphasis I touch her arm gently, pat it and say: we must be united in this front my daughter. ( ya know in case she forgets I'm her mama) or if the situation is so daing funny all bets are off with me yelling dead rats dead rats after surgery and she needs proof it happened. Again she reassured me.
Oh my gosh, why would that lovey girl or anyone in her family do that to this poor women with "the cancer"??? I imagine you saying in your high very sweet all naive voice as you read this.
Well my folks its because I have been laughing my ass off for over 20 years when: people's pants fall down accidentally (yea right), when they fall or smack into doors or glass doors or just trip over stuff. I beg and implore those whom I love dearly to never ever do stuff like that or fall around me. I am that person who will laugh, I am that person who might or might not even try to hide the terrible fact I am laughing, then straight up do a sorta snort laugh cough while asking are (laugh) you (snort laugh) ok?!? I may even have told a few stories of when lovey came out of sedation about things she said. I'm just an inappropriate laugher, one day I shall pay dearly for it but am hoping it wouldn't be day of surgery. Hence my need for reassurances.
Once when a family member walked into a glass door I laughed for like an hour, I wasn't alone in laughing though but I'm sure I was alone in the fact that days later I would recall the image and bust again laughing. Yuuup, write that down people. Lolita swears like a sailor/truck driver and laughs when people could be hurt. I'm not proud of this I'm just saying and helping you understand where my concerns are coming from.
Well my Lovey my dear daughter true to the wonderful person she is never once did any such thing and or even hinted at it.
With nurses checking me in, noting my vitals it got pretty silly, you see I have been at that surgery center more than a few times now, I have some gals who enjoy me and we laugh and laugh while they do their Lolita check in. During serious question part I see a handsome very well dressed man in a suit walk by I interrupt nurse to ask...oh my who is that?! The nurse 2 who attempting an IV insertion at that time said who who??! While she pushes curtains back to look. Nurse 1 without missing a beat says out loud oh Doctor such and such, my patient would like to meet you. Delicious man in suit comes over to meet me, shake my hand while I say wow you look like you smell good. He laughs and says what do you need done, I'll do it looking me up and down joking. He's a plastic surgeon so nurse 2 says oh I'm sure we will think of something. Meanwhile at nurse station behind him gathers a crowd to peer over at this scene. When he leaves I say to nurse 1 really? You stinker. She cracks up at me saying to him that he must smell good and there it goes for the hour they finish checking me in. Patients and nurse or assistants peer over often to look at what is so daing funny in our little bay.
Soon my lovey is allowed to join the party and come sit with me. Doctor anesthesiologist comes in to tell me his part, asks more questions to get ready for surgery. Any questions? Yes I do, I think now would be a good time for me to make one last trip to restroom and then I'm ready to get it on. Can I do that? Off he goes to find me an open bathroom, comes back to help me and my IV bag up all the while listening to me telling him the rules. Doc no one gets to see my ass, you gotta pay for that shit. He laughs saying its good, walks me to the bathroom holding me closed while carrying my IV bag. Apparently this never happens because when we walk by the nurse station several necks crane over. A few say out loud well I'll be! Nurse 2 says girl how'd you do that? Looking at the doctor and another man waiting to hold door open for me. Nurse (waving her away) I'm good I'm good I got a few cutie men helping me. I see that and there's a first for everything is her honest funny reply.
At one point nurse 1 says to lovey something like your mama is a hoot, too funny.
Calm patient lovey nonplused says oh yes, this is how my mama rolls and the way she is every day. I'm used to it by now.
See? I told you that I bet your lovey isn't like my lovey. She gets me. She really does.
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