Tag Archives: provenge

dear alcohol, we need to talk

dear alcohol,

it’s never good when a girl says “we need to talk”.. . . and this isn’t going to be good. but i have to do this.  i really do.

no question, you’ve been there for me all through the years. in cans, in crystal glasses, at parties, at bars, and sometimes when no one else wanted to be with me. best friends forever, you’ve always said!

i went to florida two weeks ago with some high hopes, and i didn’t think you were going to get so . . . . well, aggressive.  i was going to visit with facebook friends in tallahassee, tampa, and orlando.  i was going to bring my dad justin along with me.  we were going to bond.  you were going to be just something i had with dinner–or before flights.

bonding with my father is an ongoing process. he and my mother placed me for adoption when i was three years old. this is a picture of me and my new mother on the morning i was baptized, a few weeks after the adoption became final. i met my father and mother when i was twenty five years old–using a private detective to track them down.

 

the day before the trip, my dad texted me and said he didn’t feel he was up to traveling with me from his place in tallahassee to the other cities in florida.  i would stay with him and his wife on sunday evening, rent a car and sally forth throughout the state, returning on friday to catch a plane back to chicago.

but when i got to florida, i was surprised to discover that my father justin’s wife was going on a business trip.  and that justin was a lot sicker than i had ever imagined.  and that he was undergoing provenge treatment over the course of the week and the clinic wanted someone with him.  that person would be me.

i cancelled all the facebook friend visits outside of tallahassee. my friends were so understanding. i was going to bake a cake with jennifer in tampa and she said “no problem” and made the cake on her own and posted it on my wall. the cake tells the story of my visits to see facebook friends all over the world. thank you jennifer!

 

the first phase of the provenge treatment went well.  justin and i watched television while his blood was taken from one arm, processed through a machine and reinserted (minus white blood cells) into the other.  he was weak, he slept most of the days, he had no appetite.  he slept in the master bedroom, i slept in the guest room.

his wife came home on wednesday evening.  i volunteered to take justin to phase two of his provenge treatment on friday before my flight.  he would be given a very high dose of benadryl and his own white blood cells–new and improved by some mysterious process–would be reintroduced to his body.  he needed to have someone help him get home.  also, it’s just good to have someone be an advocate for your care.  especially since provenge is still in its experimental phase.

justin is actually the first person in tallahassee to get the provenge treatment. it went well, by the way, and he says he feels better. he will get two more treatments.  i’m not sure what happens after that.

the next morning my stepmother’s first words to me were “you need to get a hotel room because i can’t sleep with justin.  he snores and he disturbs my sleep.  he has to sleep in the guest room.”

i felt the hostility.  it’s always been there lurking beneath a surface of tight smiles–and it dates back to the total shock it must have been for her as a newlywed to have me show up saying “hi, i’m justin’s daughter!”  i sympathize.  i really do.

i sat at the dining room table.  she woke justin and an argument ensued between them, with each hushing the other as  if they believed i couldn’t hear.  she wanted me out of there. right then. it went beyond a desire to not sleep with a snorer.  and yes, i heard every word.

i felt rejected, belittled, demeaned, and exactly like a three year old who doesn’t understand why she can’t go home again.  to her real home.  why she has to be thrown away, because that’s what adoption meant to me.

and i would have left right then, walked out of the apartment and said “good luck to you guys”  but i was scared of leaving my dad.  she went to work.  i sat on the couch with him.  i said “this is exactly the horrible feeling that makes me want a drink.”  and he said “me too” and he got up, went to the refrigerator and we drank two beers.  it was nine thirty, alcohol, a little early wouldn’t you say?  but you were there for me.  and for him.

but that feeling, that wretched feeling followed me out of florida, back to illinois, everywhere i am, everywhere i go.  rejected, belittled, a failure, a wreck.  i’ve lost friendships, i’ve lost the respect of people i respect, i’ve lost love–the very things i have always wanted but you’re always there, aren’t you?  ready to console me.  ready to tell me it’s all right.   ready to tell me i’m pretty and witty and funny and i mean something.  and you keep saying you’ll never never leave me and i thought that was a good thing. what i’ve always wanted to hear.

but coming from you, maybe it’s not such a good thing.

i’ve tried breaking up with you before.  white knuckling it.  alcoholics anonymous.  a chinese acupuncturist who also threw in a few extra needles that were supposed to make me lose weight in addition to sobering me up.  nothing worked.  you always came back and always when i really need you and can’t resist you.

this time i’m getting outside help.  i’m scared.  i’m crying right now as i write this.  you have been a reliable friend.  but i can’t do this anymore.  i’m breaking up with you.

and really, it’s not you.  it’s me.

when i made a new years resolution to meet all my facebook friends, i met quite a few who have made the same decision, who have had the breakup talk with you.  some have been successful.  some not so much.  some have done it on their own.  some have needed what i’m about to do.  i hope all my facebook friends, all my friends, all my family can understand.  alcohol, i never meant for our relationship to be so . . . monogamous.

my biological mother gave me this picture when she met me. alcohol, this was a gal with promise and potential and i want to get that back.

 

 

 

 

 


when a cake tells a story!

the trip to florida has not been anything like i expected–and instead of fulfilling my mission of meeting all the facebook friends i know in florida, i spent the week with my father justin.  my father is undergoing a new cancer treatment called provenge.  it is the first time this treatment has been made available in tallahassee.  justin’s wife barbara was on a business trip and not available to go with him for the first phase–when the technician extracts blood over the course of three hours, harvesting white blood cells to be shipped to a laboratory in georgia.

justin’s white blood cells, the fighter leukocytes, will be enhanced in the lab and are being shipped back to tallahassee to be injected back into his body.

 

later this morning,  justin and i will go to the clinic to complete the provenge treatment.  the lab wants him to have a chaperone and in general it’s always a good idea to have an advocate, a helper, someone to make sure you get home safely.  justin’s wife is back from her business trip but she is a professor at florida state university, in charge of a department of three hundred people, and must take a conference call.  otherwise, she would be there for justin.

one of the treats, and it really is a treat, of the florida trip is getting to know my father better.  he and my mother put me up for adoption when i was three years old and i didn’t meet them until i was twenty five.  it is always interesting to spend time with either of them.

but a treat i missed was finally meeting facebook friend jennifer brand clair with whom i have been corresponding.  she and i were going to bake a cake together in her home in tampa.  she bakes cakes for all occasions and could bake one for you too!  but this is what she baked for me–

this cake is a book that i will write about my year and a half of meeting facebook friends. on the left hand page are two computers–mine and jennifer’s–joined by facebook. on the right hand page is a plane traveling to florida, where i will meet her. not this trip, maybe, but next one!

it’s a beautiful story and i have had a beautiful time in florida and i must look at it this way–i have one delicious reason to come back!  thank you jennifer!

 

 


white knights. . . .

i came to florida with my usual mission:  meet facebook friends face to face.  learn from them.   enjoy their avocations, their joys, their fears, and their lives.  and take friendship out from behind the laptop or the cellphone updates and into reality.

but i got a little sidetracked.

my father justin is receiving provenge treatment for cancer. experimental? yes. expensive? try ninety thousand a pop. weird? yeah, they take all your blood out and ship your white blood cells to a lab to be enhanced and reconfigured and then they put those white blood cells back in your body and say “cancer begone!”

 

i arrived in tallahassee and was a bit surprised.  my father’s wife was heading out on a business trip and asked me to take him to his first appointment the next day.  this required a cancellation of friendship appointments for monday and tuesday but i still figured i could do wednesday.

white blood cells (leukocytes) are the ruthless knights of our bloodstream. they fight diseases–cancer, strep throat, ebola. without them, we are without defense. tomorrow (friday) my father’s white blood cells–with new shields and swords–will be reintroduced to his body.

 

my father was feeling poorly and i cancelled the rest of the week’s travels through orlando, spring hill, tampa–but two facebook friends stopped by tallahassee to take me to lunch.  bill taylor, who lives in the city, and ron winegar who drove in from panama city.  the distraction was a great gift!

tomorrow i will take justin to his appointment to get back those white blood cells back into his system and then. . . alas, i’ll try to make it out of the state of florida!

 


provenge, the white knights, and my friends

i know what i planned to do–drive from tallahassee to orlando to spring hill to tampa and back again to tallahassee and then fly to chicago–but then there was reality.

the provenge treatment my father justin is engaging in requires that his blood be extracted from one arm and then processed in a machine which sorts out red and white blood cells.  the white blood cells are harvested and then couriered to a lab where, even as i write, they are being enhanced and changed.

leukocytes, or white blood cells, are the fighter cells and without them we have no immunity to disease.  the provenge treatment means an enhanced armor, a better sword before they are shipped back to tallahassee.  my father is the first patient to have his provenge treatment conducted in tallahassee, as opposed to jacksonville which is several hundred miles away.  provenge is a treatment which costs approximately ninety thousand dollars. 

 

justin was feeling pretty awful afterwards and when he has the white blood cells reintroduced into his system, he will not immediately feel better.  in fact, he might feel quite a bit worse.  i have been told that he will need a chaperone as he did on tuesday–this time, there will be a sedative.  for him, not for me, damnit!

we came back from the clinic and justin immediately fell asleep.  i cancelled all my facebook friend plans and was so grateful that everybody was so understanding.  sure, i felt guilty but i was the one creating the guilty–nobody was putting more on me.

but there was one friend i was too late to be able to cancel.  facebook friend #330 ron winegar and i have been facebook friends for about a year.  he drove in from panama city to meet me for lunch.

ron is an air force and marine veteran. he was initially stationed in alaska and we shared stories of our common experiences of the 49th state. he’s a firm believer in ufo’s because when he was stationed there, he had some experience with them. i was fascinated! so much so that for nearly an hour i forgot that i was supposed to be taking care of justin. no worries, justin was still asleep when i returned to the apartment.  sometimes a knight in shining armor is just the friend who has lunch with you and let’s you forget the real world! 

 

i am so grateful for my facebook friends, the ones i see and the ones i haven’t had a chance to see. .. . yet.

 

 


first we take all your blood out of you. . .

at the southeast community blood center in tallahassee, florida, i am watching a frankensteinian experiment.  for the first time in tallahassee, a provenge treatment is being performed.  my father justin is the lucky patient, and lucky is absolutely the word.

provenge is a cancer treatment which promises up to three months of continued health.  it costs $90,000.  luckily, justin is covered by insurance.

when i came down to florida, i had an expectation of renting a car and toddling all over the place meeting facebook friends.  i had a great sense of anticipation. but i was anticipating something that isn’t happening:  instead, justin’s wife left for a business trip and i am a witness to history.  although provenge has been done in other parts of the country, this is new . . . for tallahassee and for justin.

nurses adam and denise are referred to as “vein whisperers” because they can get a needle into the very smallest of veins. over a three hour period, all of justin’s blood will circulate through a machine that extracts white blood cells.

justin’s blood will go through tallahassee airport. .. . i hope it doesn’t get stopped by the t.s.a.  and then . . . they’ll put the blood back into him!