Checking in with me as she tends to do. This dear cousin has impeccable timing with an overflowing abundance of love, beautiful prayers, and a sense of humor all dispensed from very far away as she lives in the Netherlands. It always seems to be the case that when she checks in its usually when I am in mid situation that I had not yet shared with the public at large while struggling to find words or desire to tell it. In fact quite a few blog entries were started with a back and forth between us. She not only helps raise my spirits but she unknowingly helps "get the story outta me". For that I could not thank her enough.
My latest blog entry talks of my low white blood cell count. A number of one. What I don't say is that during that week I had a noticeable soreness on my left side, as if I had been lifting weights which I had not because I don't do that and we don't have that kind of stuff lying around. Off to see my surgeon on Monday morning for a look see. At this point I was having drainage now coupled with persistent hurting. Yea I know (shuffling the dirt around with my feet as I look down) this ain't gonna be good. #sorrynotsorry. My surgeon does a skin swab while telling me unfortunately this can happen during chemo. When the body has infection it looks for ways to remove it. And that's exactly what my body did through creating a small, very small hole in my skin.
I was scheduled for another chemo last Thursday. Sure. Just when I'm feeling better. That's the roller coaster you get on for when ya got "the cancer", well the kind that needs chemo anyway. You get the chemo, you get the shots, you take the meds, you tough it out for a rough week or so and then, just then as you cycle up feeling like dancing you get another momma said knock you down chemo cocktail for another cycle all over again.
This past Wednesday still the same with more pain still knocking at my door. Knock knock. Who's there? Pain. We are coming to hang out. A bad knock knock joke. Aren't they all? I called doctor first thing to see if results were in. Wednesday was critical as it's day before chemo and she knows this. My surgeon calls me in the afternoon to say instead of chemo I will be meeting her up at the hospital for an emergency remove and clean out session. A common yet persistent hard to treat skin bacteria that decided to park itself in my left side is not gone. It was our last resort and I was prepared for it. It was discussed many times during the skin opening/painful new stitches sessions.
My oncologist called right after to conform this was the best course (they had spoken and consulted before she called me) and that it's important to be all clear for him to continue chemo. He tells me it's very hard to treat with antibiotics on a healthy person never mind someone with compromised immune and lowered defenses. Furthermore that even if I wasn't going to do chemo this would keep cropping up but slower. It's just strong chemo with low white blood cells unmasked it allowing that bacteria to gather strength and forces growing rapidly. Little effers.
There's this cartoon picture I was laughing over recently and shared on my Instagram account. It was a picture of a king germ (they have those right?) surrounded by his little germ minions with pitchforks in their germ hands gathered around a slice of pizza that had fallen on the ground. With a caption that read: Germs!! attack!! And the king germ says to the minions: NO-we wait five seconds!! Get it? Five second rule? Yes well my five seconds is long gone and the king had staked his place or was trying to.
On Thursday I return to the hospital I have been so many times. A semi reunion in a way with kisses and hugs from my nurses welcoming me back admiring my short hair. It's a bittersweet reunion as I'm not supposed to be there until around summertime. While surgery for me IS drastic, I wasn't resisting this plan. And the fear that used to grip me is lessened by these funny spirited strong women. In any case no one needed to tell me I had a raging infection, I felt something off all week. We tried to conquer it with several rounds of antibiotics each time it opened in efforts to knock the king and minions outta me. Strong ones that made me feel awful and as we see now didn't work. I come to find through school of hard knocks we can bear anything we once thought unbearable.
It's during my check in at the hospital I meet a nurse who herself is a breast cancer survivor. As we do check in we cheer on her overcoming cancer victory and share our stories a little. We talk about her nails (she just had them done) and my eyeliner (I had none on, it was mascara) like girlfriends chatting except I'm at the hospital in funny looking purple socks, a surgical gown and I'm naked underneath. And it's time for IV. I show her the marks from my two recent hospital visits where we were hopeful and start high in the crook of the arm, each time having to go lower looking for veins. She does her very best to be gentle and cause me no harm as she works to find it. She finds it. Nothing doing. Don't worry she tells me I'm going to call Jeannie over, (one of my favorite nurses who I have written about here-I have many favorites) to see what she can do. Team approach and I like it. When jeannie comes over she tells me sweetly: lovebug, we are going in pediatric style, so bear with me punkin while I get there, okay. After the IV is done she comes to give me another hug and cradles my face with her steady hands as I hold her arm while she does this. We are in this embrace as she kisses me on my cheek and whispers a beautiful prayer in my ear.
After surgery I'm in recovery with my usual recovery nurse who as I'm waking up catches me up on what's happening in her life as if we never stopped our conversation from over a month ago. It's soothing to hear her voice and listen to her. How's your pain sweetie she asks waiting for me to finish telling her before she continues catching me up. This nurse had the very same procedure I had months ago with no germ minions around so she is on her way to reconstruction followed by a celebration trip with a girlfriend to Europe after. Im thrilled for her and say her so except for it's muted with after surgery haze and fog. I'm sure it's no coincidence that these particular people are in my path or by my side now. It's all meant to be and stories I need to hear. I suspect people who have similar traveled paths to us are all around us, it's just that we don't know they came down from that mountain until we find ourselves on the very same mountain. They are my guides now, along with my team of doctors.
As I'm in recovery I see an extremely handsome young man in his twenties in scrubs moving about, working away. It's not a bad sight to see really. Usually it's all women nurses or assistants with the occasional surgeon who arrives to drop off his clipboard at the nurses station. The surgeons wear black scrubs so it's easy to tell who they are. This handsome young guy is a dead ringer for the actor Jessie Metcalfe or a younger Mark Consuelos (Kelly Ripas husband). Possibly even better looking. While he works never does it cross my mind for a second what he actually does there.
Soon enough all questions we have are answered as I say goodbye to my recovery nurse and wish her well in her upcoming procedures to move to the next section in recovery. The get dressed get up out of bed receive discharge instructions section. Here you go (she says his name-but we don't use anyone's real name in this public blog except mine and it's my middle name) I have another one for you. Great! Thanks replies the Mark Counsuelos look alike enthusiastically.
Either I was in a drug haze, woozy or both it did not strike me what that meant until he says to me: ok-I'm gonna help you get dressed now. Me: speechless blinking my eyes. Eventually I gain strength and stammer out: ok. He searches my bag for the first article of clothing. Yes, you got it. Jessie Metcalfe look alike will help me put my panties on. He pulls out my colorful sports bra first and says is this it? Noooo it's not that big I say almost laughing but only to myself, you know in my mind. Eventually he fishes out my undies as I ask him if he is any good at putting them on. Don't worry I'll help he says. It went right over his head. Fine by me. Let's get awkward moment over with. There it continues with each article of clothing except for my clasp in front-sports bra as I am wrapped around my chest over and over with an ace bandage. There is a God and He is merciful.
Another nurse calls Hercules and my parents to come meet me to bring the car around. As she gives after surgery instructions she mentions pain pills and stool softeners (this always happens) but in the direction of Hercules. I say nnuuurrseee we don't talk about poop with hercules. That doeessntt haaapeeen. She laughs and catches on real quick while finishing her instructions. Soon I'm free to go home and rest in my bed.
When nurse muneca calls me the next day to check in on me I tell her the story of my handsome underwear helper on-er. She cracks up into tears as I assure her the story was real and so is the resemblance. In fact I was waiting for her to arrive during that time so it could quietly point him out for her to have a compete visual later.
I type this as I am smothered in love and care again from Hercules and my family. They never stop it's just applied with more depth and concentration during these times. My pain -either I'm used to it or it's less- isn't so bad. I have a drain in me again and that's the most uncomfortable part about this new gig. I just can't complain much or at all as these lovely people around me do all they can (I couldn't list all the thing but try to imagine everything) so that I have nothing to do and nothing to worry about besides get up each day, and focus on healing with a smile on my face with conviction in my heart. So that's what I do.
This is my life right now. Not my whole entire life. Just right now. Quote: If you want to forget all your other troubles, wear too tight shoes. ~the houghton line, November 1965
Sunday, February 9, 2014
Monday, February 3, 2014
One is the loneliest number that you'll ever do
Know that song? You may or may not. It's the opening line to a song called One written by a man named Harry and performed by a band called Three Dog Night. A long time ago. It still rings true and popped into my head recently.
I received a little care package last week. From the very lovely people I work with. Instead of just my paycheck, which is enough to send by itself and I'm so thankful for by the way, also came a bunch of other little goodies.
A lovely card with lots of wishes signed by several people. This cute little tiara with a fancy black fun feather that sticks up, this pink pencil with some candy attached to the end (WHO doesn't need a pencil like that in their life??) some little trinkets and a few cute rubber duckies. Oh AND aaannndd twenty dollas. That's right, I got twenty dollas. You see, earlier in the week a few amazing generous people from my office actually bought me a fridge. And a microwave. Yes you are reading this correctly. The doorbell rings- ding dong. I open it and there's a box with a brand new mini fridge. Next day. Ding dong-there is a microwave! Amazing really. It was so I could have my own set up close to me (my house is kinda big with two floors). So the twenty dollars has a note attached that said: for snacks to put in your fridge with a smiley face.
When I tell you not to feel sorry for me I mean it. It's because I could share with you 25 stories about amazing generosity like this that comes to me every single day. What?? Who is that blessed or lucky? Well me. I am. These little acts of generosity I receive may not always be quite as large as a fridge or cute as little notes or funny little ducks but it's generosity all the same. And I'm humbled and awed into a state of grace.
Here's a funny thing about what thoughtful gestures mean to people and it's interesting coincidence on timing. This little package? It came to me on my "crash" day. They tell you all about it up at the chemo cocktail place. They sure do. Like this (talking like my sweet high voiced oncologist nurse Cynthia) "Well honey early next week after this first chemo you are gonna feel tired. Ok? Usually around Tuesday. And you are gonna want to stay in bed all day. But remember you need to be sure to try to get up a little and absolutely make sure you drink water and eat something. Even if it's ice cream. Okkkaayy?" She tells me this all the while looking over her glasses and nodding her head encouragingly. Looking at me first and then at nurse muneca. She says to nurse muneca "she's gonna feel tired honey."
Really I said while I raised my eyebrow a little suspiciously. Like that tired? Even though I haven't done that one day ever. Even after allllllll my surgeries? Ok, thanks for the advice my dear, I will watch for it, be ready and do my best to beg for ice cream if needed. She laughs and says oh good. And off I go.
So here I was all last week waiting for the crash. It was mmeeehhhh not great but not like I gotta stay in bed all day tired and weakly call out for ice cream please with a dry scratchy throat because I can't drink water. Tempting as that vision is that didn't happen. I was just doing my thing, moving around a little and well slowly ya know cuz If I don't it makes me nauusseeooouuusss (singing that word all operary like). This was tested several times when I acted like a stupida thinking I'm all normal moving at a normal pace then oooo boo, that queasy feeling comes on. So I chilled. And I def moved slow. Def slower while holding my nose during the FML I gotta open the fridge and possibly catch a stink drift that might be floating outta there. It seemed to be working. Except for once I forgot about the smells that wafts out and lingers there after you close the fridge and I walked right into it after. Calmate-no throwing up here, I got skills but I'll admit it was a close call.
All that was before I got my very own non smelly fridge. To place my non smelly items and not have to hold my nose or carefully strategically place my shirt over the top of my nose and do this awkward hold pattern. See timing? I didn't know I was going to need that.
It was during this week of wait for the crash time I thought to myself: weeeeellll this sure isn't the funniest time I had but it sure isn't----heeeellppp I can't get up, bring ice cream.
Thursday afternoon rolls around and I start feeling kinda chilly. I put some layers on. I feel more cold. I even put socks on. I never wear socks. Hercules gets home and I suggest maaaayybee we turn on the heat. Then I suggest (really I begged) he bring me a 4th blanket to go with my other three and maaaayyybeee he can tuck them around me like a burrito? You know to be sure that no heat escapes anywhere, up to my chin please I tell him. While he is doing that calling me his mami burrito he kisses me. Before I could smile and say thank you my teeth start chattering and my body too. I start to do some simple 2+2 math and realize.
Oh. Crash. This is the day. We call my doc who has me start taking some Tylenol right away and alternate with Advil every four hours. Usually when this happen with chills and low grade fever you are to go directly to hospital, do not pass go, do not collect $200 for an immediate IV antibiotic drip. Being that the Tylenol would stop my chills and I was to see my doctor the next morning anyway he said he will take care of me. I don't like hospitals and I was too freezing cold to move so I said fine with me doc. Except when your teeth are chattering it sounds different. Ooookkaay doooccc gooodd niightt while Hercules is going for the Tylenol.
So that's the day my package came. Earlier in the day. I could not open it when I was by myself. Cuz I was tiirirrrreeeddddd and weak in my arms (rolling my eyes) -no joke. When Hercules opens it there comes tumbling out those cute little things along with a card and a little play money. Well now, even a girl going through a crash day with some horrible chills wrapped up like a burrito would smile. So I did.
Thank you ever so kindly lovely ladies for thinking of me and by coincidence happens to be on one of my lowest days in a long time I tell my manager when I send an email thanking them.
To finish my story and give you some closure (as if you needed any but your getting it anyway, I ain't got anything else to do) the next day I dragged my aching body up out of my comfy warm bed, threw a wig on and some cute scarf (I have hair it's just dull like, lack lustery) to get myself out the door while my parents drive me to my oncologist. It's there they do my weekly blood draw that the culprit is found. And out of the closet for all to see and point at. My white blood cell count. It's supposed to be like 4.0 to 10.0. For me, for you, for anyone. Well mine is 1. Just one. A lonely number of one. Almost zero. Poor little guy. And absolutely the cause of my body aches chills rising temp and tired feeling, really tired like crash tired.
So I'm grounded now with restrictions. No raw food or touch dead things (raw chicken or fish) It could kill me if it had some nasty bacteria hanging around on it. No being around people, you know because they tend to breath and have germs. I have to wash my hands a lot. No problem there. Everyone else has to wash and sanitize their hands too and hold their breath around me. I'm put on a round of take two a day antibiotics to prevent infection. When I ask if I have any other restrictions my doc said nope, just try to be as normal as you can but be careful for at least 4 days. That neulasta shot they gave me after chemo to boost my white blood cell count is doing it's work, bringing on new immunity any day now. I know it's working because I was believing it to be and I was praying on it. But mostly I knew because the shot makes your bones hurt. Really bad. And my bones hurt. They tell me thats the marrow producing more of those lil suckas. Fine by me.
Here's what my dog mason thinks about the no white blood cell count situation. See pic below. Me? I got some words but they are not for the pious or young.
I received a little care package last week. From the very lovely people I work with. Instead of just my paycheck, which is enough to send by itself and I'm so thankful for by the way, also came a bunch of other little goodies.
A lovely card with lots of wishes signed by several people. This cute little tiara with a fancy black fun feather that sticks up, this pink pencil with some candy attached to the end (WHO doesn't need a pencil like that in their life??) some little trinkets and a few cute rubber duckies. Oh AND aaannndd twenty dollas. That's right, I got twenty dollas. You see, earlier in the week a few amazing generous people from my office actually bought me a fridge. And a microwave. Yes you are reading this correctly. The doorbell rings- ding dong. I open it and there's a box with a brand new mini fridge. Next day. Ding dong-there is a microwave! Amazing really. It was so I could have my own set up close to me (my house is kinda big with two floors). So the twenty dollars has a note attached that said: for snacks to put in your fridge with a smiley face.
When I tell you not to feel sorry for me I mean it. It's because I could share with you 25 stories about amazing generosity like this that comes to me every single day. What?? Who is that blessed or lucky? Well me. I am. These little acts of generosity I receive may not always be quite as large as a fridge or cute as little notes or funny little ducks but it's generosity all the same. And I'm humbled and awed into a state of grace.
Here's a funny thing about what thoughtful gestures mean to people and it's interesting coincidence on timing. This little package? It came to me on my "crash" day. They tell you all about it up at the chemo cocktail place. They sure do. Like this (talking like my sweet high voiced oncologist nurse Cynthia) "Well honey early next week after this first chemo you are gonna feel tired. Ok? Usually around Tuesday. And you are gonna want to stay in bed all day. But remember you need to be sure to try to get up a little and absolutely make sure you drink water and eat something. Even if it's ice cream. Okkkaayy?" She tells me this all the while looking over her glasses and nodding her head encouragingly. Looking at me first and then at nurse muneca. She says to nurse muneca "she's gonna feel tired honey."
Really I said while I raised my eyebrow a little suspiciously. Like that tired? Even though I haven't done that one day ever. Even after allllllll my surgeries? Ok, thanks for the advice my dear, I will watch for it, be ready and do my best to beg for ice cream if needed. She laughs and says oh good. And off I go.
So here I was all last week waiting for the crash. It was mmeeehhhh not great but not like I gotta stay in bed all day tired and weakly call out for ice cream please with a dry scratchy throat because I can't drink water. Tempting as that vision is that didn't happen. I was just doing my thing, moving around a little and well slowly ya know cuz If I don't it makes me nauusseeooouuusss (singing that word all operary like). This was tested several times when I acted like a stupida thinking I'm all normal moving at a normal pace then oooo boo, that queasy feeling comes on. So I chilled. And I def moved slow. Def slower while holding my nose during the FML I gotta open the fridge and possibly catch a stink drift that might be floating outta there. It seemed to be working. Except for once I forgot about the smells that wafts out and lingers there after you close the fridge and I walked right into it after. Calmate-no throwing up here, I got skills but I'll admit it was a close call.
All that was before I got my very own non smelly fridge. To place my non smelly items and not have to hold my nose or carefully strategically place my shirt over the top of my nose and do this awkward hold pattern. See timing? I didn't know I was going to need that.
It was during this week of wait for the crash time I thought to myself: weeeeellll this sure isn't the funniest time I had but it sure isn't----heeeellppp I can't get up, bring ice cream.
Thursday afternoon rolls around and I start feeling kinda chilly. I put some layers on. I feel more cold. I even put socks on. I never wear socks. Hercules gets home and I suggest maaaayybee we turn on the heat. Then I suggest (really I begged) he bring me a 4th blanket to go with my other three and maaaayyybeee he can tuck them around me like a burrito? You know to be sure that no heat escapes anywhere, up to my chin please I tell him. While he is doing that calling me his mami burrito he kisses me. Before I could smile and say thank you my teeth start chattering and my body too. I start to do some simple 2+2 math and realize.
Oh. Crash. This is the day. We call my doc who has me start taking some Tylenol right away and alternate with Advil every four hours. Usually when this happen with chills and low grade fever you are to go directly to hospital, do not pass go, do not collect $200 for an immediate IV antibiotic drip. Being that the Tylenol would stop my chills and I was to see my doctor the next morning anyway he said he will take care of me. I don't like hospitals and I was too freezing cold to move so I said fine with me doc. Except when your teeth are chattering it sounds different. Ooookkaay doooccc gooodd niightt while Hercules is going for the Tylenol.
So that's the day my package came. Earlier in the day. I could not open it when I was by myself. Cuz I was tiirirrrreeeddddd and weak in my arms (rolling my eyes) -no joke. When Hercules opens it there comes tumbling out those cute little things along with a card and a little play money. Well now, even a girl going through a crash day with some horrible chills wrapped up like a burrito would smile. So I did.
Thank you ever so kindly lovely ladies for thinking of me and by coincidence happens to be on one of my lowest days in a long time I tell my manager when I send an email thanking them.
To finish my story and give you some closure (as if you needed any but your getting it anyway, I ain't got anything else to do) the next day I dragged my aching body up out of my comfy warm bed, threw a wig on and some cute scarf (I have hair it's just dull like, lack lustery) to get myself out the door while my parents drive me to my oncologist. It's there they do my weekly blood draw that the culprit is found. And out of the closet for all to see and point at. My white blood cell count. It's supposed to be like 4.0 to 10.0. For me, for you, for anyone. Well mine is 1. Just one. A lonely number of one. Almost zero. Poor little guy. And absolutely the cause of my body aches chills rising temp and tired feeling, really tired like crash tired.
So I'm grounded now with restrictions. No raw food or touch dead things (raw chicken or fish) It could kill me if it had some nasty bacteria hanging around on it. No being around people, you know because they tend to breath and have germs. I have to wash my hands a lot. No problem there. Everyone else has to wash and sanitize their hands too and hold their breath around me. I'm put on a round of take two a day antibiotics to prevent infection. When I ask if I have any other restrictions my doc said nope, just try to be as normal as you can but be careful for at least 4 days. That neulasta shot they gave me after chemo to boost my white blood cell count is doing it's work, bringing on new immunity any day now. I know it's working because I was believing it to be and I was praying on it. But mostly I knew because the shot makes your bones hurt. Really bad. And my bones hurt. They tell me thats the marrow producing more of those lil suckas. Fine by me.
Here's what my dog mason thinks about the no white blood cell count situation. See pic below. Me? I got some words but they are not for the pious or young.
Wednesday, January 15, 2014
Chemotherapy
Seems like such a simple word. Only a couple syllables long. Then you might notice: weeeell it has the word therapy thrown in there, it can't be thaaat hard, and it's pretty easy to say, oh and it even has a short nickname so if you are feeling tired that day and don't want to use the whole word you can just say....chemo. Easy right?
When I think of chemo (and I force myself to) what runs through MY head is one singular thing, not a plethora of things. Just one thing. And for a few minutes you get the idea that indeed sounds simple enough.
What a simple, couple syllables, sounding like only one thing you have to do DECEPTIVE word. It's a charade of all charades.
To even get to the chemo part, which I refer to as "the cocktail" because I need to have myself walk down some path of disillusion in all this stark harsh lighting soon you gonna be a baldie take your shirt off constantly reality, there is lots of prep work to do before. Besides the visits with my oncologist to be sure I'm strong and healed up I visit a cardiologist for an echocardiogram. It's to get a baseline of my heart. Then back to the hospital for an IV port placement procedure. Member? Going in right next to my ticker.
When I think of chemo (and I force myself to) what runs through MY head is one singular thing, not a plethora of things. Just one thing. And for a few minutes you get the idea that indeed sounds simple enough.
What a simple, couple syllables, sounding like only one thing you have to do DECEPTIVE word. It's a charade of all charades.
To even get to the chemo part, which I refer to as "the cocktail" because I need to have myself walk down some path of disillusion in all this stark harsh lighting soon you gonna be a baldie take your shirt off constantly reality, there is lots of prep work to do before. Besides the visits with my oncologist to be sure I'm strong and healed up I visit a cardiologist for an echocardiogram. It's to get a baseline of my heart. Then back to the hospital for an IV port placement procedure. Member? Going in right next to my ticker.
Because the skin getting healed up, closed up part seems to be moving along from what recent doctor visits tell me it is important to keep it moving. Next??!! I call out in the imaginary waiting room of all the pending items that runs through my head. Next was the visit to my cardiologist for the echocardiogram. Done. I check that off on my imaginary clipboard I'm holding while I yell out again: neeexxxttt.
Ah yes, port placement. What that really means is this. I go back to the hospital (please know I constantly refrain from saying scene of the crime as I AM prone to use dramatic words) and get to stay for half a day. I'm put to sleep while they open me up a teeny bit and place something up on the left side of my chest for my chemo treatments. The chemo I will get won't be administered by IV in the arm. Couple of reasons: I have to go too many times. When you have lymph nodes removed you don't want that arm getting poked/prodded too much to avoid lymphodema. That ain't fun. It's permanent. So no blood pressure, taking blood and def no IV on the left side. Like forever. The chemo cocktail I'll get can cause tissue damage if the "special cocktail" drips out of my IV. See? I pay attention sometimes. So they use a port. My port procedure was put off and off due to skin not being closed all the way. All clear and ready for take off time. It's happening Tuesday the 21st. Neeeexxt?
The next "prep yoself before you wreck yoself" item is you go back to school. In a way. Except in the school I went to while growing up when they told me things like Lincoln freed the slaves or Washington was the first president it didn't make my mouth drop open in surprise and then flies gathered around.
Because when you are gonna get the chemo cocktail you need to attend what they call "chemo class" and it's there they drop some info on you that has your head spinning, your mouth opens and you start to drool which makes them stop teaching class occasionally and say "what, you're making that face again, what's the matter"? I didn't realize I was doing that face so I just said "oh me? Neh, just ignore me. New stitches and am trying not to curse out loud due to nerve pain so I can listen". Which was true at the time but that's not why I was making a confused or overwhelmed face.
A friend of mine who calls every week or so to get the live updates says "what's that mean" when I tell her I have to go to chemo class. I tell her "oh, I don't know. Maybe they are gonna tell me how to look good throwing up or something." She says "Oh wow really?" NOooooooo-that's my 14 year old immature brain processing it and then spitting it out in a dry monotone voice. Like hell if I know what they are going to tell me. Well I sure do now.
While there was talk about throwing up, how to feel good and look your best there was also A TON of other information. Overwhelming important stuff. And lots and lots of prescriptions with simple to read (allegedly) instructions on what to take when. Boy was I glad 3 other people were there listening too. At least I think they were listening.
Oh my, Stan! Stan! Shes talking about the chemo again and she always says really bad cuss words when she does- I imagine you say to yourself in that high sweet voice while clutching your hand to your chest.
Oh calm down now, no one is going to drop eff bombs, however I do reserve the right. Rough road ahead I'm told. Besides the shocking reason I needed the port and the shocking disappointing amount of other drugs I have to take both before and after each chemotherapy infusion there are just lots of things that can happen.
The next "prep yoself before you wreck yoself" item is you go back to school. In a way. Except in the school I went to while growing up when they told me things like Lincoln freed the slaves or Washington was the first president it didn't make my mouth drop open in surprise and then flies gathered around.
Because when you are gonna get the chemo cocktail you need to attend what they call "chemo class" and it's there they drop some info on you that has your head spinning, your mouth opens and you start to drool which makes them stop teaching class occasionally and say "what, you're making that face again, what's the matter"? I didn't realize I was doing that face so I just said "oh me? Neh, just ignore me. New stitches and am trying not to curse out loud due to nerve pain so I can listen". Which was true at the time but that's not why I was making a confused or overwhelmed face.
A friend of mine who calls every week or so to get the live updates says "what's that mean" when I tell her I have to go to chemo class. I tell her "oh, I don't know. Maybe they are gonna tell me how to look good throwing up or something." She says "Oh wow really?" NOooooooo-that's my 14 year old immature brain processing it and then spitting it out in a dry monotone voice. Like hell if I know what they are going to tell me. Well I sure do now.
While there was talk about throwing up, how to feel good and look your best there was also A TON of other information. Overwhelming important stuff. And lots and lots of prescriptions with simple to read (allegedly) instructions on what to take when. Boy was I glad 3 other people were there listening too. At least I think they were listening.
Oh my, Stan! Stan! Shes talking about the chemo again and she always says really bad cuss words when she does- I imagine you say to yourself in that high sweet voice while clutching your hand to your chest.
Oh calm down now, no one is going to drop eff bombs, however I do reserve the right. Rough road ahead I'm told. Besides the shocking reason I needed the port and the shocking disappointing amount of other drugs I have to take both before and after each chemotherapy infusion there are just lots of things that can happen.
Oncologist Nurse: Are you easily prone to nausea?
Me (stammering): Uh, does dry heaving if Im forced to go to Walmart or gagging if I see someone wear jean capris with socks AND sneakers count? Seriously, no one should try that look ever. I'm doing you a favor telling you that.
Oncologist nurse: So basically you're saying you are easily prone to nausea.
Me in quiet voice: Um yea, yup, basically (I don't want to come off as too smart in these meetings, they might expect me to help out or something).
Oncologist nurse: Ok, here's what you need to do.
And then she lists like 25 things. I only stopped her a few times to ask if this was all written down somewhere. She says it sure is, don't worry we will repeat it and are here to help you throughout. She sends me home with a thick folder.
Neeexxxttt? These days in between my doctor visits, I'm doing my after school homework and studying. Only it feels like some sort of bizarre detention from a class that has strange titles. How to get rid of constipation. Here a handy recipe for that. What to do if you throw up more than twice. How to deal with the metallic taste you will have. How to prevent or treat mouth sores (no lie folks). Don't buy that stuff that makes your eyelashes grow during chemo, wait until after. Note: that was when I found out I was going to lose my eyelashes, maybe my eyebrows and THAT caused my mouth to drop open in shock. I'm sure I made "that face".
Oh yes, there's homework and information for the people around me too. How to wash your hands to prevent the spread of infections. Don't bring smelly things around the "chemo patient." (I like those topics.) Be sure the chemo patient doesn't have more than two loose bowel movements without calling the office. Really. I'll be talking about that?? Out loud. With someone? I def want those conversations happening. How about don't let the chemo person sleep all day without drinking water or they could wind up in the hospital with severe dehydration.
I have a strong feeling and suspect I wasn't the only one in the room with a shocked open mouth and flies gathering round.
Saturday, January 11, 2014
The author Paulo Coehlo tells us
"When your legs are tired, walk with your heart." in his book- Manuscript found in Accra.
Amazing simple words from one of my favorite authors. "She always says that" you say. I know-I know! I could say this about 15 or 20 authors if pressed. It's words, remember? I love them. Especially ones that inspire me and move me. Or make me cry and scream with laughter. I could fill entire pages on my blog about him or quote him everyday if I didn't know a few things. First thing I know is in MY blog the words mostly need to come from my own heart and from the road I have traveled. Second because I believe everyone needs to discover good words and people like Paolo Coelho on their own terms in their own way. It's my hope that you do.
This phrase I share with you I happened to come across this morning while drinking my coffee in my sun filled and surprisingly chilly kitchen (Surprising? I live in arizona remember?). It stopped me dead in my tracks today. It struck me so that I read it over and over. For many reasons. I understand these words. I mean I reeaaaallllyy understand them.
Yes. My legs are real tired lately. All this forced lying around after surgeries and procedures got them that way. EFF U cancer. So my legs are weaker now. My legs that have carried me through so much. That helped me walk right over some high drama like it ain't nobody's business. My legs would do that quick -oh my, I think see some crazy ass stuff getting ready to go down- and walked me right out of it doing that quick walk half jog using your arms. But not lately. I often wonder what is the reason behind the reason I have been made to be so still lately. Who knows. I haven't figured it out. And I sure don't try to. It's important to not let that kinda stuff run too long in my head. You know what stuff I'm talking about. In case you don't I'll say it here. I don't care for vagueness too much (except for when it comes to my age then I'm all about that shit). The kind of questions that cause you to wonder what is it you did so terribly bad in your life that got you to where you are. Well it's nonsense baloney thinking and doesn't deserve space in my head now. So I don't go there. Well maybe for 3 seconds. Then I get distracted with something interesting my dog is doing or a funny email a good friend sent me.
So in all reality I HAVE been using my heart to help me walk. My strong heart loaded with conviction and faith. It's my heart that knows quite a bit how to handle adversity and it's my heart that's rooted in good thoughts about myself and others. And my mind. My steady focused mind that has helped me to not run screaming through halls saying awful non sensical things peppered with lots and lots of bad words. It's not like I haven't thought about it. The silly and outright irreverent thoughts that run through my mind as I go from doctor office to doctor office have kept me rooted in sanity. Mostly. I do say mostly because of my past blog entry about throwing baking products. That wasn't my most sane lucid moment. Wheeeeew aren't we glad that's not happening on the daily. It's not a question. It's a fact. We are glad.
It's the hearts of others that has carried me. The amazing and plentiful love of my family. The love and spirit of kind friends. And strangers. People I didn't even know until now. It's their hearts and love that has carried me when I simply could not stand much less walk. Their uplifting spirit, jokes, cards, words and love has downright snapped me out of ---oooohhhhh I wanna go sit in the I'll feel sorry for myself constantly corner.
Amazing simple words from one of my favorite authors. "She always says that" you say. I know-I know! I could say this about 15 or 20 authors if pressed. It's words, remember? I love them. Especially ones that inspire me and move me. Or make me cry and scream with laughter. I could fill entire pages on my blog about him or quote him everyday if I didn't know a few things. First thing I know is in MY blog the words mostly need to come from my own heart and from the road I have traveled. Second because I believe everyone needs to discover good words and people like Paolo Coelho on their own terms in their own way. It's my hope that you do.
This phrase I share with you I happened to come across this morning while drinking my coffee in my sun filled and surprisingly chilly kitchen (Surprising? I live in arizona remember?). It stopped me dead in my tracks today. It struck me so that I read it over and over. For many reasons. I understand these words. I mean I reeaaaallllyy understand them.
Yes. My legs are real tired lately. All this forced lying around after surgeries and procedures got them that way. EFF U cancer. So my legs are weaker now. My legs that have carried me through so much. That helped me walk right over some high drama like it ain't nobody's business. My legs would do that quick -oh my, I think see some crazy ass stuff getting ready to go down- and walked me right out of it doing that quick walk half jog using your arms. But not lately. I often wonder what is the reason behind the reason I have been made to be so still lately. Who knows. I haven't figured it out. And I sure don't try to. It's important to not let that kinda stuff run too long in my head. You know what stuff I'm talking about. In case you don't I'll say it here. I don't care for vagueness too much (except for when it comes to my age then I'm all about that shit). The kind of questions that cause you to wonder what is it you did so terribly bad in your life that got you to where you are. Well it's nonsense baloney thinking and doesn't deserve space in my head now. So I don't go there. Well maybe for 3 seconds. Then I get distracted with something interesting my dog is doing or a funny email a good friend sent me.
So in all reality I HAVE been using my heart to help me walk. My strong heart loaded with conviction and faith. It's my heart that knows quite a bit how to handle adversity and it's my heart that's rooted in good thoughts about myself and others. And my mind. My steady focused mind that has helped me to not run screaming through halls saying awful non sensical things peppered with lots and lots of bad words. It's not like I haven't thought about it. The silly and outright irreverent thoughts that run through my mind as I go from doctor office to doctor office have kept me rooted in sanity. Mostly. I do say mostly because of my past blog entry about throwing baking products. That wasn't my most sane lucid moment. Wheeeeew aren't we glad that's not happening on the daily. It's not a question. It's a fact. We are glad.
It's the hearts of others that has carried me. The amazing and plentiful love of my family. The love and spirit of kind friends. And strangers. People I didn't even know until now. It's their hearts and love that has carried me when I simply could not stand much less walk. Their uplifting spirit, jokes, cards, words and love has downright snapped me out of ---oooohhhhh I wanna go sit in the I'll feel sorry for myself constantly corner.
You see I need to declare this now. It's a reminder to me and a powerful one. For the reason we have only begun to walk on the cancer is a cray cray punk azz that will weaken you till you are down on your knees road. It will if I let it. So I don't. And I won't.
I have my chemotherapy dates now. It's seems this last little skin burning more stitches procedure did the trick. EFF U some more cancer. So after many months and procedures my skin has stayed closed, finally. We sure had some high fives up in my surgeons office the other day. This clears the road for chemotherapy. And going to the hospital to get my port placement done. After I smiled and did the high five I got a momentary look of confusion of my face. Like wait? what? Well, It's time.
I know this because my oncologist promptly said when I visited him last-two weeks. He took at gander at the latest work and without hesitation said- two weeks. Eeeeeee. I almost had spontaneous diarrhea. Not actual diarrhea. Just some kind of pre diarrheal bubbly guts movement in my stomach upon hearing those words. I knew it was coming but somehow when he said that I got that feeling and made noises. Then I gave him an opportunity to think it over while my legs nervously swung under the examining table. Nothing doing.
Two weeks it is. January 23rd. It's closed up he said and we are ready. We are??? Nurse muneca agreed. She came with me that day because he wanted to meet her. And she wanted to meet him. So they met and they both agreed.
Off we go to sit with the scheduler who looked at the order and started to punch a ton of things in the computer and there you have it. I'm booked for the next 3 months. There is more coming after that it's just they only go out so far. I get to have more chemo, a different drug, for 12 long weeks after these first ones. I'm gonna be pretty busy it seems.
So while I said before I got 99 problems and chemo ain't one. I of course shall amend that previous statement. A take back if you will. I tell you now that I will without shame or hesitation rely on the hearts and love of others to carry me through.
Love Covers a Multitude of Sins
First Peter 4:8 “Above all, keep loving one another earnestly, since love covers a multitude of sins.”
Wednesday, January 8, 2014
Excuse me, excuse me----cancer lady coming through
Or that's what it feels like it must sound when you get deeper into this cancer treatment process. To ME anyway.
At first you might be able to maintain mystery. Just have people only just wonder upon seeing the slow stiff movements you make after surgery. Although it's clear as light of day you are in pain, which you are, but they can't really SEE cancer or confirm it unless they outright ask you. Or happen to be psychic mind readers. I sure hope I'm not hanging around physics mind readers and they can read "my mind". That would be bad.
No, you can have people thinking you have a pulled muscle and get by fine. You don't actually wear the "hi-I have cancer" sign around your neck until you are bald, wearing wigs, cancer scarves and have 5th grade boobs.
There's a saying in Spanish:
Cado uno sabe donde le aprieta el Zapato
Which basically means each person knows where his shoe hurts. It's only when the shoe might be filled with painful sharp annoying pebbles that causes you to limp and walk in funny ways it becomes obvious for all to witness that you might have to talk about it.
You see I know pain and discomfort can be covered up as there are lots of things that have happened in my life, not outright tragedy, but tough stuff. And people had no idea. I would walk around all normal like but really inside I was a straight up country song. I mean the really bad country song where the guy lost his wife, the house, his dog and truck. But I could pretty much go about my day with no one noticing at all or commenting. And that was fine with me most of the time.
Previous to my cancer diagnosis I wasn't a fan of answering the phone while sick because even the mildest stuffed up nose causes immediate alarm and concern. Phone rings and there my hand would hover over it while clearing my throat so I sound better than I actually felt. It never worked. Of course I know my family loves me and wants to know how I am. But if you are really sick (you know the kind-the once every two years bohemian flu) the only real true answer is -weeellll..... I feel like absolute shit on a shingle. Except you can't say that, because people get confused. And they start to get weird images in their head. So you don't say that. Instead you make up big fat lies and say things like: oohh, I'm feeling better. Or please don't worry, the worst of it is gone, I'm sure. Or my favorite was: really I'm fine, I sound worse than I feel. It's not that I like lying, it's that I just want to skip over the I look and feel like crap, I have tissues stuffed up my nose to stop the constant leakage of mocos (boogers in Spanish) running outta my nose convo part and just get down to what you were going to talk about before you knew I was sick.
Except in cancer situations where your appearance will alter for all to see, you simply can't do the walk around like NOTHING has happened dance. You can't. It's too obvious. And as you start the walk fuuuurrtther down the "cancer is a punk azz and I'm gonna kung fu it's punk azz" road you have a lot more things happening. Like on your body, like that's real obvious.
To not talk about it or even tip your hat in that direction is to completely ignore the giant multi colored elephant taking a dump in the room. It's called awkwardness. And I'm not a fan of it. More important I haven't perfected that -lets ignore the straight up obvious what's going down right in front of both of our eyes and carry on as normal small talk-conversation. I must of missed that class in school.
Anyone who is a women of curves (or any kind of body really) can tell you they know exactly when they have conversations with a person who doesn't make eye contact and the person conducts the conversation all the while looking down at their breasts, the entire time. Its happens to almost every women. And I'm here to tell you there is NEVER a time it happens when you don't know it's happening. I'm not saying it's bad, it's good or otherwise. Im just saying it's awwwkkkaarrrddd.
Same exact thing when you are having a wild bad, and I mean bad hair day. Then you have run out of time to fix it and simply face facts you gotta leave the house like that. Then all day long you can see people looking "up" at your hair. Once I felt that my hair might have been a little too puffy up top like my old 80's jersey days but simply had to leave the house or risk being late. Lemme tell ya the last thing you want when you have really bad hair and don't want people looking at you is TO BE LATE and then-everyone looks at you. In the car I could see my sister was constantly looking "up" at my hair. I told her if she didn't stop that I was going turn around and go home to fix my hair. She said "well, I can't help it, it's just too big." There you have it. Someone pointed at the elephant instead of ignoring it.
And right now at this time in my life that's fine by me. While I'm not encouraging those "so what size will your new boobs be?" conversations or questions. Remember from my previous FAQ section of the blog---I ain't coming to the "lets talk about the size of our boobs party." I will say there's nothing wrong with allowing some kind of conversation around the obvious. Sorta like this:
You: so I see you must have cancer and are bald and wearing wigs now
Me: Yup
You: well that sure sucks
Me: Yup
And there we both go, carrying on with our lives as normal. No elephants around to be found.
Salivdor Dali
There's nothing as surreal as reality
Nada hay mas surreal que la realidad
At first you might be able to maintain mystery. Just have people only just wonder upon seeing the slow stiff movements you make after surgery. Although it's clear as light of day you are in pain, which you are, but they can't really SEE cancer or confirm it unless they outright ask you. Or happen to be psychic mind readers. I sure hope I'm not hanging around physics mind readers and they can read "my mind". That would be bad.
No, you can have people thinking you have a pulled muscle and get by fine. You don't actually wear the "hi-I have cancer" sign around your neck until you are bald, wearing wigs, cancer scarves and have 5th grade boobs.
There's a saying in Spanish:
Cado uno sabe donde le aprieta el Zapato
Which basically means each person knows where his shoe hurts. It's only when the shoe might be filled with painful sharp annoying pebbles that causes you to limp and walk in funny ways it becomes obvious for all to witness that you might have to talk about it.
You see I know pain and discomfort can be covered up as there are lots of things that have happened in my life, not outright tragedy, but tough stuff. And people had no idea. I would walk around all normal like but really inside I was a straight up country song. I mean the really bad country song where the guy lost his wife, the house, his dog and truck. But I could pretty much go about my day with no one noticing at all or commenting. And that was fine with me most of the time.
Previous to my cancer diagnosis I wasn't a fan of answering the phone while sick because even the mildest stuffed up nose causes immediate alarm and concern. Phone rings and there my hand would hover over it while clearing my throat so I sound better than I actually felt. It never worked. Of course I know my family loves me and wants to know how I am. But if you are really sick (you know the kind-the once every two years bohemian flu) the only real true answer is -weeellll..... I feel like absolute shit on a shingle. Except you can't say that, because people get confused. And they start to get weird images in their head. So you don't say that. Instead you make up big fat lies and say things like: oohh, I'm feeling better. Or please don't worry, the worst of it is gone, I'm sure. Or my favorite was: really I'm fine, I sound worse than I feel. It's not that I like lying, it's that I just want to skip over the I look and feel like crap, I have tissues stuffed up my nose to stop the constant leakage of mocos (boogers in Spanish) running outta my nose convo part and just get down to what you were going to talk about before you knew I was sick.
Except in cancer situations where your appearance will alter for all to see, you simply can't do the walk around like NOTHING has happened dance. You can't. It's too obvious. And as you start the walk fuuuurrtther down the "cancer is a punk azz and I'm gonna kung fu it's punk azz" road you have a lot more things happening. Like on your body, like that's real obvious.
To not talk about it or even tip your hat in that direction is to completely ignore the giant multi colored elephant taking a dump in the room. It's called awkwardness. And I'm not a fan of it. More important I haven't perfected that -lets ignore the straight up obvious what's going down right in front of both of our eyes and carry on as normal small talk-conversation. I must of missed that class in school.
Anyone who is a women of curves (or any kind of body really) can tell you they know exactly when they have conversations with a person who doesn't make eye contact and the person conducts the conversation all the while looking down at their breasts, the entire time. Its happens to almost every women. And I'm here to tell you there is NEVER a time it happens when you don't know it's happening. I'm not saying it's bad, it's good or otherwise. Im just saying it's awwwkkkaarrrddd.
Same exact thing when you are having a wild bad, and I mean bad hair day. Then you have run out of time to fix it and simply face facts you gotta leave the house like that. Then all day long you can see people looking "up" at your hair. Once I felt that my hair might have been a little too puffy up top like my old 80's jersey days but simply had to leave the house or risk being late. Lemme tell ya the last thing you want when you have really bad hair and don't want people looking at you is TO BE LATE and then-everyone looks at you. In the car I could see my sister was constantly looking "up" at my hair. I told her if she didn't stop that I was going turn around and go home to fix my hair. She said "well, I can't help it, it's just too big." There you have it. Someone pointed at the elephant instead of ignoring it.
And right now at this time in my life that's fine by me. While I'm not encouraging those "so what size will your new boobs be?" conversations or questions. Remember from my previous FAQ section of the blog---I ain't coming to the "lets talk about the size of our boobs party." I will say there's nothing wrong with allowing some kind of conversation around the obvious. Sorta like this:
You: so I see you must have cancer and are bald and wearing wigs now
Me: Yup
You: well that sure sucks
Me: Yup
And there we both go, carrying on with our lives as normal. No elephants around to be found.
Salivdor Dali
There's nothing as surreal as reality
Nada hay mas surreal que la realidad
Sunday, December 22, 2013
I got 99 problems but a chemo ain't one
Well not yet anyway. While that IS coming in a few short weeks it's not on my
mind or agenda as much. You see because of my reoccurring skin infections/skin not coming together issues I'm pretty busy. I probably should be focusing on that storm coming my way or at very least engaging in wild, carefree last days with hair feeling strong before I head off into that tundra. Storm/tundra=chemo metaphor.
But I'm not and I can't for the fact that the last month and in particular these last few weeks and days are all encompassing laser beam focused on one particular kinda hard to see small patch of skin area. Funny when I think that its in an area where later the war or battle that's occurring is supposed to not be easily found due to fine surgeons using their skilled hands. Unless, of course someone is all up in that funky town. I say with confidence that sure wasn't happening before and it definitely isn't after.
I have always believed pure unabashed total nakedness should come shrouded or cloaked in lots of mystery, very low faint lights (think small candle some 20 feet away) and strategic draping, maybe with some Barry White music. Not at all on the regular, out in the open, in the daytime with harsh non forgiving overhead lighting, take your shirt off and contort body to get a peek way-all the while showing others, over and over. I mean has anyone even been to a nude beach, like in the daytime?!?? Not me, however I feel strongly to my core it's not pretty.
Why do I believe this?? Simple. Because I'm not (and neither are you) a "super model" or this fictional person they call Gisele Bundchen. She doesn't even exist!! She is a made up fake person, who we are led to believe walks around all bronzed, toned and perfect in the daylight-daytime hours. Naked. I never even met someone who said they spoke to her. Mystery, background music and low lighting is what us real people need. But breast cancer just doesn't allow it.
Lately my favorite part of the "let's have Lolita be really uncomfortable and learn how to practice grace in action" experiment is the constant conversations about it. Yes-oh yes I realize the irony of that statement as I make statements about uh the situation. It's just this is a day in the life now that borders on ridiculousness at times. At least it does to me.
Without fail after the Wednesday surgeries/procedures (3x's and finished counting) I get the Friday call from my surgeon office that starts with a simple Hello Lolita! Hi doctor (or assistant person) I say calmly and nonchalant like I don't know why she is calling. Ok, today is the day I want you to take off the surgical bandages, wash it with soap and water (FYI it-my boob) take a look and gauze it all up, then call me back she firmly instructs me. I act like I forget for minute when all morning I'm saying to myself five more minutes for like 50 minutes. I say to her in a question sorta not all the way convinced voice: ooooh yeaaa, today's the day huh, how about let's not and say we did hehe?? She laughs says you're funny, call me back. Click.
Crap! Of course I know I have to do this and of course I know it's important. It's just I'm bratty, remember? And a scardy cat. No getting around it I realize as I slowly trudge off to the bathroom half dragging, half kicking my fresh nightgown or house dress I'm going to wear after I do "all that stuff". It's always nightgown or house dresses while convalescing as I find with constant constriction tight feeling in your chest the last thing you want to do is constrict your waist area with anything. Not to mention I don't really own sweat pants and T-shirt type clothes. In any case it would make it a little more complicated for constant gauze changing/wound checking that has to happen from wake up to go to bed time.
So these are my days now. It's a full time job lately. I do of course resist saying out loud melodramatically I quit this job!!! Eh, no one will hear and it doesn't matter. I'm at the P.O.N.R. now. The road is way too narrow for turn around and go back. This is my place.
After the latest procedure this last Wednesday a friend messaged me out of concern wanting to help saying "oh my gosh, this is terrible, what can I do to help"? First let me share with you this is hands down the best question to ask a -holding shit sandwich person- by the way. Because it allows them to answer telling you just what really is needed. The answer could be to ask for more prayers, more emotional support, send me funny stuff, or keep in touch. The keeping in touch and funny stuff for me is important as the unexpected procedure after effects have me way more isolated for a longer period of time than I normally am. This is happening during holidays when people are all ready incredibly busy and stressed themselves.
So I told her with frankness and honesty that besides the fact that I'm over myself and I imagine everyone else is too, as in we should be talking about how stupid chemo us, how much that sucks with me blogging chemo can kiss my grits blah blah blah is that I really needed all of those things I listed above. Of course my friend agreed.
This time is a true test of mind over matter. Belief and faith my father told me as he stopped by a few days ago with more healthy healing food. So that's my prescription.
Philippians 4:8
Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.
mind or agenda as much. You see because of my reoccurring skin infections/skin not coming together issues I'm pretty busy. I probably should be focusing on that storm coming my way or at very least engaging in wild, carefree last days with hair feeling strong before I head off into that tundra. Storm/tundra=chemo metaphor.
But I'm not and I can't for the fact that the last month and in particular these last few weeks and days are all encompassing laser beam focused on one particular kinda hard to see small patch of skin area. Funny when I think that its in an area where later the war or battle that's occurring is supposed to not be easily found due to fine surgeons using their skilled hands. Unless, of course someone is all up in that funky town. I say with confidence that sure wasn't happening before and it definitely isn't after.
I have always believed pure unabashed total nakedness should come shrouded or cloaked in lots of mystery, very low faint lights (think small candle some 20 feet away) and strategic draping, maybe with some Barry White music. Not at all on the regular, out in the open, in the daytime with harsh non forgiving overhead lighting, take your shirt off and contort body to get a peek way-all the while showing others, over and over. I mean has anyone even been to a nude beach, like in the daytime?!?? Not me, however I feel strongly to my core it's not pretty.
Why do I believe this?? Simple. Because I'm not (and neither are you) a "super model" or this fictional person they call Gisele Bundchen. She doesn't even exist!! She is a made up fake person, who we are led to believe walks around all bronzed, toned and perfect in the daylight-daytime hours. Naked. I never even met someone who said they spoke to her. Mystery, background music and low lighting is what us real people need. But breast cancer just doesn't allow it.
Lately my favorite part of the "let's have Lolita be really uncomfortable and learn how to practice grace in action" experiment is the constant conversations about it. Yes-oh yes I realize the irony of that statement as I make statements about uh the situation. It's just this is a day in the life now that borders on ridiculousness at times. At least it does to me.
Without fail after the Wednesday surgeries/procedures (3x's and finished counting) I get the Friday call from my surgeon office that starts with a simple Hello Lolita! Hi doctor (or assistant person) I say calmly and nonchalant like I don't know why she is calling. Ok, today is the day I want you to take off the surgical bandages, wash it with soap and water (FYI it-my boob) take a look and gauze it all up, then call me back she firmly instructs me. I act like I forget for minute when all morning I'm saying to myself five more minutes for like 50 minutes. I say to her in a question sorta not all the way convinced voice: ooooh yeaaa, today's the day huh, how about let's not and say we did hehe?? She laughs says you're funny, call me back. Click.
Crap! Of course I know I have to do this and of course I know it's important. It's just I'm bratty, remember? And a scardy cat. No getting around it I realize as I slowly trudge off to the bathroom half dragging, half kicking my fresh nightgown or house dress I'm going to wear after I do "all that stuff". It's always nightgown or house dresses while convalescing as I find with constant constriction tight feeling in your chest the last thing you want to do is constrict your waist area with anything. Not to mention I don't really own sweat pants and T-shirt type clothes. In any case it would make it a little more complicated for constant gauze changing/wound checking that has to happen from wake up to go to bed time.
So these are my days now. It's a full time job lately. I do of course resist saying out loud melodramatically I quit this job!!! Eh, no one will hear and it doesn't matter. I'm at the P.O.N.R. now. The road is way too narrow for turn around and go back. This is my place.
After the latest procedure this last Wednesday a friend messaged me out of concern wanting to help saying "oh my gosh, this is terrible, what can I do to help"? First let me share with you this is hands down the best question to ask a -holding shit sandwich person- by the way. Because it allows them to answer telling you just what really is needed. The answer could be to ask for more prayers, more emotional support, send me funny stuff, or keep in touch. The keeping in touch and funny stuff for me is important as the unexpected procedure after effects have me way more isolated for a longer period of time than I normally am. This is happening during holidays when people are all ready incredibly busy and stressed themselves.
So I told her with frankness and honesty that besides the fact that I'm over myself and I imagine everyone else is too, as in we should be talking about how stupid chemo us, how much that sucks with me blogging chemo can kiss my grits blah blah blah is that I really needed all of those things I listed above. Of course my friend agreed.
This time is a true test of mind over matter. Belief and faith my father told me as he stopped by a few days ago with more healthy healing food. So that's my prescription.
Philippians 4:8
Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.
Thursday, December 19, 2013
It's hard to dance with the devil on your back, so shake it off
That's what Florence sings to us in her song Shake it off. I feel like I hit the jackpot each morning when Pandora serves it up to me first thing. Every time I turn it up while drinking my breakfast shake in the sun filled kitchen and try to take it in. You know figuring how to make that feeling last a little longer after it's done.
What's the devil on MY back lately?
This problem left boob skin situation over here. Pointing at it talking in a tone of voice similar to how a stay at home wife tells her husband that "his kids" have attitude problems as soon as he walks in the door. In fact I would like to formally declare my desire to disassociate myself from that leftie right now. Oh that? Yea no that's not my boob if someone asks. Not that anyone has asked in addition to the fact I know that's not possible. It's there all day, every day reminding me. I don't want it to go away, I just want some cooperation.
We are now at prrocceeddurre #4 since the big "get the fu&$@ cancer"out surgery on October 31st. It seems each time I felt a little strength come back or a little better then boom here's a dead rat to park themselves in my bra and everything looks great as I make the doctor rounds then a few days later I start hooting and hollering ooo ooowwwww and there ya go-skin separating.
If you are tired of hearing about it I don't blame you. I am way over my sorry misbehaving boob myself. Oh hey, if your counting how many times I'm gonna say the word boob we are at number #4. Back to the being tired of me not healing right. I get it. Like come on Lolita I've been praying my buttoski off, so have the people up at my church and now I have to ask them agaaiinn!! Or listen girl we mention your name at the dinner table nightly, it's getting repetative!! Oh yea. I know, I know.
In an effort by my doctors to keep me out of major surgery and away from complete anesthesia the last couple procedures were with local anesthesia and a late night party at my surgeon's office. The first party was last week, Wednesday if you recall and the most recent was again on Wednesday this week. I check in at the surgeons office saying heeeyyyy, it's the problem child. Because the office at this time is closed it's just us girls. On Wednesdays the doctor doesn't go to the office because she is busy in surgery ALL day. Then after her 12 hour day saving lives or changing them she gets to come meet me and get it in some more. In addition if anyone there had plans well that's not happening. No one complains, no one ever gives the idea but I feel terrible.
While waiting for doctor to arrive yesterday I wanted to stay in the waiting room instead of the "other room" a little longer. Mostly so I didn't have a panic attack now that I know what's coming. In the waiting room there happens to be display of the gel fake boobs in various sizes. So because my right side has no issues I quickly looked around and put size number 2 in my shirt. Hmmm. I took a few pictures, sent that out. Put that back and grabbed the next size, more pictures. Of course suddenly someone is behind me and probably still laughing.
While my doctor is doing her work we start to go over all the reasons for this, again I crave or beg for action to do or not do. Although she has never said that this is highly unusual she confirms it when I outright ask her. Yes, people do have to return to surgery to skin snip or infection. It's just very unusual this keeps happening. Excellent. "I'm special". Not in anyway I want to be either. From day 1 of Lolita, you have breast cancer to now. I was perfectly happy to live out my life privately minding my own business with no excessive peeks at my boobs. Well too late for that. We both go over the list again, I confess to every foolish thing I might have done to find blame or the culprit and solve the mystery. She shares with me she has gone over the list several times herself to determine just why this is happening. I fit none of the criteria. So here we are. More stitches, more down time, more unsureness. Lemme tell ya I'm running out of room and skin down there which I was made painfully aware of last night and today.
All this while unfortunate, painful and unexpected causes a bigger issue in a bigger picture of this process. She always quizzes me on my next oncologist visit, what else needs to be done (port placement was put off) and chemo start date (have to be healed for that to start). My surgeon is a plastic surgeon but she specializes in reconstruction so she is well aware of a ticking clock we have going on and a small window of opportunity. Chemo needs to happen within 3 months of removal date of cancer for best results. She knows this and I know this and my family definitely knows this. All hands on deck type thing to keep this moving along.
My parents will arrive tomorrow to smother me with love and concern. My dad is bringing more vitamin packed food although lately he has been focusing in areas of skin and blood thickening foods. This is his area of expertise, in fact my dad could tell you the compounds in any food. When we were very young he banned soda, processed foods, pringles, bacon to name a few and had us eat our wheaties with wheat germ during a time when no one was talking about this. He is on "the job". My doctor highly approves.
Nurse Muneca's (my momma) concern is more centered around my pain (more severe this time) worrying I'm tense not allowing healing as well the issues I experienced with the narcotic pain med today. I detoxed my body for almost a month only to get back on the prune juice/hydrocodone train again. This time with terrible side effects. As I was severely nauseous all day and could barely move or eat she suggests that maybe she brings some potato to see if she makes me mashed potato with the marijuana butter that I got from the medical dispensary that's been sitting in my fridge.
Although nurse muneca is secretly a very funny and clever person she was in no way shape or form "yoking" as the way she says it. She was serious about wanting to ensure I'm not in pain and can eat. We'll see, we'll see I tell her on the phone while smiling.
What's the devil on MY back lately?
This problem left boob skin situation over here. Pointing at it talking in a tone of voice similar to how a stay at home wife tells her husband that "his kids" have attitude problems as soon as he walks in the door. In fact I would like to formally declare my desire to disassociate myself from that leftie right now. Oh that? Yea no that's not my boob if someone asks. Not that anyone has asked in addition to the fact I know that's not possible. It's there all day, every day reminding me. I don't want it to go away, I just want some cooperation.
We are now at prrocceeddurre #4 since the big "get the fu&$@ cancer"out surgery on October 31st. It seems each time I felt a little strength come back or a little better then boom here's a dead rat to park themselves in my bra and everything looks great as I make the doctor rounds then a few days later I start hooting and hollering ooo ooowwwww and there ya go-skin separating.
If you are tired of hearing about it I don't blame you. I am way over my sorry misbehaving boob myself. Oh hey, if your counting how many times I'm gonna say the word boob we are at number #4. Back to the being tired of me not healing right. I get it. Like come on Lolita I've been praying my buttoski off, so have the people up at my church and now I have to ask them agaaiinn!! Or listen girl we mention your name at the dinner table nightly, it's getting repetative!! Oh yea. I know, I know.
In an effort by my doctors to keep me out of major surgery and away from complete anesthesia the last couple procedures were with local anesthesia and a late night party at my surgeon's office. The first party was last week, Wednesday if you recall and the most recent was again on Wednesday this week. I check in at the surgeons office saying heeeyyyy, it's the problem child. Because the office at this time is closed it's just us girls. On Wednesdays the doctor doesn't go to the office because she is busy in surgery ALL day. Then after her 12 hour day saving lives or changing them she gets to come meet me and get it in some more. In addition if anyone there had plans well that's not happening. No one complains, no one ever gives the idea but I feel terrible.
While waiting for doctor to arrive yesterday I wanted to stay in the waiting room instead of the "other room" a little longer. Mostly so I didn't have a panic attack now that I know what's coming. In the waiting room there happens to be display of the gel fake boobs in various sizes. So because my right side has no issues I quickly looked around and put size number 2 in my shirt. Hmmm. I took a few pictures, sent that out. Put that back and grabbed the next size, more pictures. Of course suddenly someone is behind me and probably still laughing.
While my doctor is doing her work we start to go over all the reasons for this, again I crave or beg for action to do or not do. Although she has never said that this is highly unusual she confirms it when I outright ask her. Yes, people do have to return to surgery to skin snip or infection. It's just very unusual this keeps happening. Excellent. "I'm special". Not in anyway I want to be either. From day 1 of Lolita, you have breast cancer to now. I was perfectly happy to live out my life privately minding my own business with no excessive peeks at my boobs. Well too late for that. We both go over the list again, I confess to every foolish thing I might have done to find blame or the culprit and solve the mystery. She shares with me she has gone over the list several times herself to determine just why this is happening. I fit none of the criteria. So here we are. More stitches, more down time, more unsureness. Lemme tell ya I'm running out of room and skin down there which I was made painfully aware of last night and today.
All this while unfortunate, painful and unexpected causes a bigger issue in a bigger picture of this process. She always quizzes me on my next oncologist visit, what else needs to be done (port placement was put off) and chemo start date (have to be healed for that to start). My surgeon is a plastic surgeon but she specializes in reconstruction so she is well aware of a ticking clock we have going on and a small window of opportunity. Chemo needs to happen within 3 months of removal date of cancer for best results. She knows this and I know this and my family definitely knows this. All hands on deck type thing to keep this moving along.
My parents will arrive tomorrow to smother me with love and concern. My dad is bringing more vitamin packed food although lately he has been focusing in areas of skin and blood thickening foods. This is his area of expertise, in fact my dad could tell you the compounds in any food. When we were very young he banned soda, processed foods, pringles, bacon to name a few and had us eat our wheaties with wheat germ during a time when no one was talking about this. He is on "the job". My doctor highly approves.
Nurse Muneca's (my momma) concern is more centered around my pain (more severe this time) worrying I'm tense not allowing healing as well the issues I experienced with the narcotic pain med today. I detoxed my body for almost a month only to get back on the prune juice/hydrocodone train again. This time with terrible side effects. As I was severely nauseous all day and could barely move or eat she suggests that maybe she brings some potato to see if she makes me mashed potato with the marijuana butter that I got from the medical dispensary that's been sitting in my fridge.
Although nurse muneca is secretly a very funny and clever person she was in no way shape or form "yoking" as the way she says it. She was serious about wanting to ensure I'm not in pain and can eat. We'll see, we'll see I tell her on the phone while smiling.
Shake it off-partial lyrics by Florence and the Machines
And I'm damned if I do and I'm damned if I don't
So here's to drinks in the dark at the end of my road
And I'm ready to suffer and I'm ready to hope
It's a shot in the dark aimed right at my throat
Cause looking for heaven found the devil in me
Well what the he@l I'm gonna let it happen to me, yea
Shake it out, shake it out, shake it out oohh whoa
And it's hard to dance with the devil on your back
So shake him off, oh whoa
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