i'm sorry.. who are you again?

at my dad's funeral we all spoke... my brother, my mom and i... i think it was a testament to him that we were able to do so.. for him... in my mini eulogy i spoke about priorities.. all tying into how my dad made his family a priority... i wanted to get the point across that a loss makes us realize how short life is.. and how little room there is in our lives for people who do not wish us well.. for toxic relationships....

it was sad to realize, during this whole process, who really just could care less.. or maybe someone cared but wasn't willing to put themselves out there to express it... i realized i want people who are willing to be there for me.. for us... in my life.. and i wanted those who showed no interest.. no support for me.. for us.. out of my life... i deserve better.. my dad deserved better...

since his passing.. there are people i methodically cut out of my life.. in doing so.. i felt lighter.. and it allowed space for supportive people to further surround me...

in the same vein i hope that i have been able to evolve into a better person .. a better friend... i want to be the type of person that i would want in my own life...

my brother ended his speech by thanking people that were there... "and to those who were not there... you missed out on some special memories"... i was so proud of him for saying this.. it was a way of saying... we will be okay.... we know we did our best for him.. we know we did our best for each other... but you are pitied... for not having known him the way we do.. for not having the amazing memories he made for us...

and these people will miss out on the memories we continue to make...

5 things you MUST know about my papa

the entire reason for this blog is to give me a safe space where i can talk freely about my papa... in my intro post i expressed that sometimes i felt as though people avoided talking about him, were sick of talking about him, were sick of hearing about him... but.. that can't happen.. my papa was/is the most important person in my life... my life.. who i am... was shaped by him...

for as long as i can remember my mom would say "you are just like your dad"...and that wasn't meant to be a compliment.. she meant i was stubborn... i held my emotions close.. i was independent with no small amount of wanderlust...so yup... i am just like my dad in those ways...

they say you marry someone like your dad... yeah i did that... and i will never regret it... i feel just as safe with him as i did in my dad's arms... i know he will be the kind of father who enjoys his kids and makes them feel important.. entitled to his time...the way my dad

my dad's passing has also shaped me..in my fight and hate of cancer... in my choice to live my life to its utter fullest... to be sure of myself... to grab what i want... to grasp onto my brother even harder... to love with all i have...

in his life there are 5 things that shape me as well:

1. my dad was not afraid of the tighty whiteys... he would open the door in them.. unashamed.. and more focused on the reason you are at the door to begin with... when he was getting very thin and his shorts fell down in the front lawn (can you call rocks a lawn?) he just grinned.. and said the breeze felt nice....
2. my dad loved to dance... it was not surprising to catch him doing a little jig to whatever music was in his head.. and if there was music.. watch out!
3. my dad loved music (hence the new playlist) our lives were filled with music.. many times he would start singing and after a while we would all join in... sometimes he would sit and strum his guitar and my brother would get out his keyboard and it would sound just horrible! when his mp3 player was full of battery power, he was in his own little world of cindy lauper and old country (i am sure there is an entire blog entry on this a-comming)
4. my dad was strong... not in the way that most girls except their dads to be.. i mean STRONG... naturally strong.. he definitely had a steel working bull riding grip.. holding his hand when he prayed, even in his last days, felt like holding an anvil...
5. my dad was happiest outdoors.. hunting.. fishing... camping... even simply sitting on the porch... he was like an ocean mammal.. he had to get out for air in order to live..what i think he got out of it... is what i am ever in search of.. freedom...

if you know nothing else about my dad.. if you knew him.. you knew these things... if you know nothing about me.. if you know me.. you know these things make up my life as much as they made up his own....

what the hell did we say?

we said nothing.. we didn't talk about "it".... this morning i am angry at this fact.. because it has left me with so much to speculate... i have been following the blogs of some cancer patients and i am so envious of their openness... even to be able to vent about crappy side effects or the fear of dying... we didn't talk about any of it...

even when my dad was in the throws of major pain.. we didn't know... instead we learned to look for signs like the way he would ball his fists.... why did he let himself suffer? why not just say... i need more pain meds? all because we were too weak for him.. we couldn't take knowing.. is this what he thought? didn't he know.. did't we tell him enough that he was the most important thing in our lives.. that we would carry him.. that we would do anything for him.. that we COULD take it... ???? i guess we didn't...

instead i am left to dream the conversations we never had.. the conversations that i'm sure were in our hearts but went unsaid...

in my dream last night i was curled up next to him in the hospital bed we had delivered to the house... my head is on his shoulder.. my mouth inches from his ear.. he is telling me that life is wonderful and that i should grasp all i can get.. and i am promising him that i will live life to it's fullest.. that i want to live to be a hundred and every day.. every breath will be a tribute to him... i will live the life he can't... and he is proud of me for his...

but my god.. why wasn't this said when he was here? why am i left to dream the things i should have said.. he should have said.. we all should have said... ????

children always need their parents

my brother is sick.. the flu or something... it's amazing how a stomach ache can reduce a sixteen year old the size of a linebacker to my little bubbie who still needs his mamone... (binky)...he is enjoying that my mom is taking care of him... that's what moms do.. they soothe us and care for us when we are sick....

it makes me think though.. there is a point (usually it starts at preteen) when we pull away from our parents... we express a need for independence and convince ourselves that we don't need anyone...only to realize too late that we do....

we take moms and dads for granted... especially dads.. dads are supposed to be strong... indestructible... when i was home with him during his last few months, i accidentally set off all of the smoke alarms...i ran around trying to find a ladder high enough to reach the ceiling.. i literally ripped the alarms from the ceiling one by one until it was finally quiet... i was in full panic attack mode... meanwhile my dad retreated outside to read a magazine and escape the noise.....i crumpled to the kitchen floor and sobbed.... it was a turning point for me...my indestructible dad who has always carried us could not help me....it was the first time in my entire life that he could not help me... and it hurt like hell... to know that he was probably feeling just as helpless watching me panic...

today i need my daddy just as much as i needed him that day.... and my heart breaks for that 16 year old linebacker sleeping away the flu.. who still needs his parents...both of them....

ask a question... get preoccupation

recently someone (hi nicole) posted a blog post about the possibility of strange happenings being contributed to her dad, who was also taken by this monster... it got me thinking.. and thinking... yes.. i was a little preoccupied today...

i think i was perplexed on my ideas vs. my ideals...

when my tata passed years ago... our home smelled like him for days... then later i got a visit... my husband and i got home from a road trip and the radio was on, and loud (it was the song he was buried to... number one.. it's a spanish song and i don't listen to spanish radio stations... number two... why was the radio on?) our apartment smelled of him for hours after we turned off the radio... then i started having "dreams"...they aren't really dreams..because they happen just before i fall into an actual sleep... they are very real.. i can feel things..like the fabric of his shirt... i can smell the oil in his hair... and when i "wake up" i feel overwhelmingly empty....

when my dad was fighting the monster my tata came to me... i told him i did not want to miss my dad the way i missed him... his mouth moved.. no sound came out... then later that month... he visited me and my brother as we napped.. i saw him look at my brother and shake his head... he couldn't believe what a man he'd turned into....i very very very much believe my visits are actual visits...i think my tata comes to me because i need him to...

when my nana passed years ago.. my mom saw her in the hallway of the house the day after she passed....she was healthy looking.. rather than looking like she did when Alzheimers not only took her memory but ravaged her body.. i very very very much believe my mom did see her...i believe my nana wanted my mom to know that she was no longer sick.. no longer suffering...

knowing these things one would think i would welcome a visit from my dad or some inkling that he is still with us... I DON'T... i haven't yet wrapped my mind around it yet.. but i think i prefer to believe that he is in a far better place than earth.. and that he is not thinking of us... i once heard (not sure where) that when you get to heaven you forget your earthly life.. so that you don't miss your loved ones.. and the life you had.. that heaven truly holds no tears... i want to believe that my dad is happy.. and not missing us or feeling helpless that he can no longer carry us as he did in life... i want to believe that we assured him on his last day that we would be okay without him.. that he passed on without worry....so i find myself closed to the idea... in order to believe the ideal...

it's a paradox of thinking i know... like i said.. i don't quite understand it myself...

from the mouths of babes

kids... they seem to have a better handle on this grieving thing than most adults..

i left my special ed. student teaching assignment for three months to be with my dad...when i told my kids i was leaving to be with my dad and that i had no way of knowing when i would be back they had tons of questions:

why can't he go to the hospital?

why can't the doctors help him?

is he going to die?

each question i answered honestly...the question that seemed to stick with me was "when he dies, will you always have tears in your eyes?"... it's a loaded question... it could mean.. will i cry, or will i be sad... but it made me think that he could see my sadness.. and he wondered.. will that go away...it made me think of something someone told me about loosing a parent...it's a pain you never heal from.. you just learn to live with it...

when i came back to finish working with the kids they had many condolences to give... mostly they said i'm sorry...or nothing

it struck me that these kids understood more about grief than adults when one parent told me..."ehh.. it happens.. better him than you right?" when adults say things.. i have to remind myself that they really just don't know what to say... but even kids know that in that case.. you just don't say anything...

a few weeks ago my cousin's adorable son who loved his tio robert. asked when he was coming back.... his dog had died too and he said they were just taking too long to get back....

i know Ry... they are taking way too long!

a lifetime of lessons on his last day of life

my papa's last day is not one i like to think about.. but there are parts of it that i have to think about...that give me strength

he woke up in the morning and we knew it would be a different day because he wasn't able to get out of bed for the first time...he spent the morning in and out of sleep...at one point he called me close to him and gave me a message to tell everyone "just thank you, just thank you, just thank you"...by about 7pm. my aunt, who was a retired hospice nurse said that it would be a matter of minutes... his breathing was shallow.. he was non-responsive... we prayed and sang to him.. hours passed and he was still there... we took turns sitting with him.. sharing memories.. while it was a hard time.. sad.. there were tears... but there was also laughter... and more importantly...togetherness...

at midnight my cousin and brother put on papa's rodeo gear and took his cowbells out to announce the new year (this was papa's idea... days before he told my cousin that he could ring in the new year.. literally) the boys jumped in a convertible and we cheered them on...i cried and laughed at the same time... i was so sad that papa was in bed and possibly wasn't aware of what the boys were doing... and happy that they were doing what he'd wanted them to do....

more hours passed and at about 3am my brother and i went to lay down.. we left him with kisses and constant reassurances that it was okay for him to go... a half hour later we were woken up... he had passed... i will always believe he waited for his kids to leave the room... he didn't want us to hang on to him as he let us go....

i will take what i've learned for that day and put it to use for the rest of my life... appreciate those you love.. never fail to thank them.. to love them... and above all LIVE... live life... be crazy.. ring those proverbial cow bells every day... let everyone know...you are alive... that you are life!

Control

advice... want some?

never tell a cancer patient what to do.

consider it a pet peeve of mine.

think about it.... when you have cancer inside of you, you have no choice but to relinquish some control...

so who are we.. or who is anyone to tell a patient what they should do and what treatment they should or should not do? don't they deserve THAT much control over what happens to them?

i was thinking of my dad today.. and how much he wanted to live... he would have tried anything..had there been anything else to try.... we were right behind him...but always giving him control to try or not try a treatment... believe me i wonder all the time if he would have had a better quality of life if he hadn't had treatment... chemo ravaged his body which he never recovered from... and i wanted him to stop and just enjoy the rest of his life...but he needed to do it for him... for us...

he didn't sleep and many days he would drag... and we would nag him to sleep at night.. that would make him feel better during the day... finally one night he looked my mom in the eyes and said "listen, you aren't going to like it, but i am going to sit here in my chair and watch tv. and i will go to bed when i want to".... my mom and i looked at each other and giggled... pumping our fists inside ourselves shouting "you go with your bad self".... by all means.. he deserved control over his damn sleep pattern...in the end.. i'm so glad that my papa passed with dignitary.. a man in control of what cancer would allow.. till the end

on God.. and faith

my memories of church consisted of singing and falling asleep at my Nana's feet...the foundation was in Christianity...that about covers it...

my mom "gave her life to Christ" a few years ago..to be honest we all struggled with it... there were bible studies two times a week and church two times a week...there were different views and ideas... i think we all worried that we had lost her...

my dad and i had a conversation about it...he had started to go to some bible studies and to church on some Sundays....but he held fast that there was no plan to be baptized as well... (i have only shared the hilarious nature of this conversation with my brother and i like that we share it so i won't write it here)

after his diagnosis and as the cancer progressed he started to attend church more often..then in September 2009 he was baptized...i called the following day to congratulate him... is that what you do when someone is baptized? awkward! haha.... but he accepted the congrats... and i had to ask him... i had to know...was he doing this out of fear? was he tying up loose ends? what he worried about his fate?

you see before this i hadn't talked about death with him.. actually we didn't talk about it again... ever... but i needed to be sure.... "i did it because i felt it was right"... and that was all the assurance i needed...

my dad was considered a new Christian....but any old Christian could tell you he was a walking (rolling) example of pure faith... it broke my heart to hear him pray... he never prayed for himself.. he prayed for us to have faith... and for those praying for him not to give up.. to have faith....he prayed for other people far less sick than he was... to have faith

i struggled to not be angry with God.. to not place blame on something i was questionable about to begin with... i never failed to be amazed that he was not angry with God.. nor did he ever ask why?

Faith... in seeing that and being surrounded by it... i can no longer question God...i don't know if it will ever lead to my own baptism or assimilation into organized religion.. but i am sure.. without a doubt that God exists and worked within my dad.... and that God answers his prayers every day by giving us strength to live without him.

sleep? what's that?

i've gotten used to not sleeping. even when i DO sleep it's not a fitful sleep.

it started with the all night worry-fests. all night worrying about an appointment to the oncologist coming up. all night wondering what would happen to us if it didn't turn out right. all night thinking about him and how he was really feeling.

after the last dr. apt. i went home. i hated to face it but i went home to spend his last moments with him... he got worse and needed people to be with him at night. i took my turns. he didn't sleep. he tried to suck as much life out of the day as he could. night was too quiet. i'm sure this is when he let himself think of the worst. we watched tv, took multiple trips to the bathroom, avoided sleep. on my nights off i was woken up to give him morphine... i was his pusher :0)...or find the remote control... i got used to being fully awake upon being woken up...we all did....when he passed we all looked at each other at night.. wondering now what?

since i've been home.. i still don't sleep... my mind doesn't stop... even when i do sleep i can't escape my thoughts... i dream of telling him things i never did.. never had the guts to... time taken for granted....i wake up fully awake and my mind is not my own.. it belongs to him.. to them... night is too quiet.. it's when the tears come and i try not to wake my husband.....

last night was a particularly rough night.... in the day.. as in many of my days... i am like a zombie without having slept with left over bits and pieces of thoughts and dreams still floating in my head.

We Are

I am made of lost memories, of last breaths, of first cries

I am the stillness of laying awake, listening for a call that I will never hear again.

I am a legacy formed from the word Fight

I am fulfilled by purpose, I am without purpose

I am saved from the beautiful pain of hundreds of needles passing through skin

until the picture becomes clear

I live within the smell of witch hazel and of ink

I am his sister

I am his wife

I am her daughter

I am lost within life’s roles

like being in a house of mirrors… I can’t find my face

I am forever striving to be resilient… whole

I am forgotten then remembered when it’s too late

I am not yet who I will be tomorrow

He is stubborn, angry….typical

He is “Chubby” and “Papacito”

He is too young to remember

too young to matter, too young to care

He’s broken 10 goldfish, countless hearts, my dining room chair

He’s lost every grandparent, a dad, my Metalica CD

He’s taken candy from stores, bikes from open garages, my heart’s rhythm

He’s thrown away hours online, his first pair of glasses, my advice

He is my little brother in the middle of the night with pinches and wet willies

He is my big brother when he comforts, consoles and cares for me

He is amazing, endearing and infuriating

He is two, ten and 16

all in one

He is not yet strong enough to carry us

He will not let us fall

He is the man of the house… too soon

my family is like Jenga...

you ever play that game Jenga? you build this tower of blocks then you take turns taking out a block until the tower tumbles down...

since my papa's passed i feel like it's harder and harder to keep our blocks together...

we are all doing our best...we are all doing what we can and what we know how.... neither of us is ready to rebuild our tower without his block in it....

on a happier note i have begun to surround myself with cancer.. in a productive way this time... it's not all about worrying and waiting...and my anger can be put to better use than breaking things around the house or yelling at my husband....

i have signed up to volunteer for cancer society of america.. i will be involved in two 5ks next month...i am crocheting my chemo caps like a mad woman... i hate this disease but sitting around hating it is doing no good.... and my dad's legacy deserves more than anger... this is me officially OFF my ass!

adding yet another stage

there is a new stage to the grieving process....i am calling this one "taking music back"

this one sucks for me because i love music... i don't do anything without music... i am eclectic which i blame squarely on my father....but there are certain songs that i just can't listen to...sometimes i'll start a song but then turn it off because it ends up feeling like self opposed sadomasochism....i can not wait to get to this stage...i miss my precious songs!

i can not listen to:

I'm Yours- Jason Mraz - as my dad passed we sang some hymns around him...my brother sang this to him... months before he passed my brother asked him what his favorite song was...my dad said "the one that plays on sister's (that's me) phone when eric (that's my husband) calls"

Bobby McGee- Janis Joplin- one Christmas long long ago i wanted a Debbie Gibson CD... i got Joplin instead!

Most anything by Kris Kristofferson, The Eagles, Gordon Lightfoot or Michael Martin Murphy- actually add almost anyone who's played Austin City Limits (he never missed it)

Alison Krause make my eyes water when she sings just about anything.. but Your Long Journey is Russian roulette

Anna Nalik's Just Breath (2 AM) is off limits... for one line... yes... ONE LINE

Then there's the rally cry... Bonnie Raitt sings "Help me lord I'm feeling low"...... a song he would listen to and sing (shout)... loud... before his in office chemo treatments... I use it now when i need to feel near him... or get some courage.. figuring if he could do what he did for us then i surely am capable of more... but sometimes it just makes me think of what he must have been feeling....he didn't talk about it.. much... he never said "this sucks" "i hate this" "i'm dying".... he just rallied.... but what must he have been feeling?

There are more songs.. in fact... we all (all who have been touched by his mighty life) have our own off limit songs....

I can't wait to get to that stage...i'm a little tired of hip hop.. but hip hop is safe

the roller coaster

what are the stages of grieving again? everyone say it with me:

• shock and denial
• pain and guilt
• anger and bargaining
• depression and reflection
• acceptance and hope

i know them well... because this is the ride you are on after diagnosis as well.. in fact i went through the stages after every visit to the oncologist... every time a treatment didn't work, every scan that showed how aggressive the cancer was...then the loss of him....

i don't think it should end with acceptance and hope though.... i think the end stage should be the ability to remember someone fondly without pain... i am able to think of him and laugh... or smile.. but always later came the pain.. the hurt at the back of my jaw and burning behind my eyes...but today.. i reached a new step

my dad used to play this joke on my mom.. we would be driving and my dad would ask my mom to put her hand to the window

"did you feel it?" he asked

"feel what?"

"did you feel the pain?"

confused she'd say no she didn't

after a bump or passing of power lines he ask her again....

it took a while for her to "get" that it was pane.. not pain... as in window pane... hardee har har

so my mom called with this memory today... she said "i think he would do things just to prove that i was stupid!"

i've been laughing since... with no pain!

safe within my anger stage

my dad did what many patients do after a diagnosis... he spent time on line finding homeopathic "cures" and a multitude of reason for what was happening.

don't drink dairy... it'll give you cancer.

eat whole grains... they prevent cancer.

don't microwave plastic... it causes cancer.

he became a bit of a health nut for the extent of his treatment.

on his last visit with the oncologist he was told none of the treatments had worked. his cancer had progressed as it was very aggressive. palliative care was suggested.... he came home... and ate two doughnuts and a glass of cow milk.

yesterday i was told that my aunt (tia, mama) vera has been diagnosed with RCC and there are hotspots on her colon which indicates that it has most likely spread. before i was born she battled breast cancer and her breast was removed. she never had re constructive surgery and is proud of her win over cancer and big foamy falsie.

i thought about my dad's attempt to save us all from cancer by forcing us to consider food that was good for us and the overall avoidance of toxins...little did he understand cancer's true nature... but now we understand... cancer is the boogeyman

never thought i'd do this...

i'm a fairly private person when it comes to my emotions.... maybe that's why i mix up pain and anger... hurt and hostility... frustration and the need to throw things...

i suppose this blog is a last ditch effort to regain sanity...

my dad is dead... yeah..that stings...

my dad died on january 1st of this year.... it was less than a year from when he was diagnosed with rcc (kidney cancer)... by the time he was diagnosed it was stage 4.... it was in his lungs and lymph nodes...

people are tired of hearing about it.. i get the feeling people just want me to be better already... which is why i don't share much... unless i'm asked... and even then.. i have gotten really good at saying "i'm fine" in a way that makes people stop asking....

but when people stop asking i loose my outlet.. i loose my dad.. i can only keep him alive in my heart.. so i have to keep talking about him.. i have to tell his story.. our story... and this is where i will do it...

cheers