Bipolar...

i am feeling a little bipolar right now... i am a gemini- the twins... very fitting.  i certainly feel like different people at different times... maybe i am thinking of schizophrenia and not astrology... nah, i am sticking with the twin thing. :)

today i had my first PET/CT scan & my first MRI... lucky me.  i had to fast for one of the tests... to be honest, right now i cant remember which one.  its been a long day... back to the testing- the pet/ct scan is kinda like a geographic map of me... the technician said they scan my entire body, and the dye should locate any cancer... this was actually the last test i did today.  the first was a mri-wo-w (thats how it was written on their forms- i couldnt stop thinking that wow was ironic... even tho i knew it was intended as without contrast then with).  but they performed the mri on my brain to make sure it is cancer free.  and that machine is noisy! but since i grew up in a beach/bar town in san diego i have learned to relax even with loud obnoxious noises around me... a trick that came in handy in that machine... at one point it sounded like it was saying "twirly" over and over again... another (keep in mind i just finished school for motorcycle mechanics) it sounded like a loose cam chain, then valve float... oh! i almost forgot the best part about that noisy machine... since they were scanning my brain they strap my head in... i am not claustrophobic, but plastic mask-ish thing inches from my strapped in head was a little odd.  not to mention the fun of being stuck, not once, but both tests... and the mri "stuff" they injected tasted metallic and gross... the pet/ct "stuff" stunk like acetone (nail polish remover)... both techs said most people dont notice those pleasant side effects.  why am i always one of the lucky ones?

since next week is thanksgiving i have to wait til the week after to follow up with my dr.  that is when we will discuss treatment options... so far the only thing she has mentioned is interferon.  i dont like that idea.  but i guess we will see once we have these results.  maybe i am fortunate and they removed the mets when it was discovered... and that is the glimmer of hope i am trying to grasp onto right now.  the wait is gonna be rough tho... i hate not knowing- always have. 

then there is the bipolar feelings about that group Girl Talk... i wrote about in previous post by same name.  i really, really want to talk with them... but they meet thursdays at lunch.  my hubby works with my sons class kinder-garden at that time.  and i kinda want to know what is going on before talking with them.  it is just proving to be such a challenge right now... very frustrating because i see this as a chance to help spread the word, i just cant seem to actualize it now. 

back to the treatment ideas... i was talking to auntie tiger about everything (as usual)... of course treatment was one of the topics... and i told her i would rather agree to be a guinea pig for a trial than choose something i already know doesnt have the greatest track record and WILL make me sick.  i hadnt been able to put that into words prior to that conversation.  again, it doesnt matter right now... i need to wait for scan results in about 2 wks before we discuss any treatment.... have i mentioned how i hate waiting? :)

half the time i know i am repeating myself... the other half, please just bare with me... i wasnt exactly all here to begin with, but stress is not helping.  i get stress headaches, always have... but that is one reason the brain scan.  the other reason, is memory loss... but stress does that too - you obsess on, or freak out about something and everything else gets lost... i used to be so good with numbers, i could always remember appts, dates, phone, numbers, etc... now, ha! no more...

to me its crazy how everything is so cyclical... and by that, i mean these scans are just a portion of this journey so far... but a necessary step to move along to the next step... to me, that is cyclical because it feels never ending... and if i think circles, i think infinity... i think of the way my mind works in the first place.  alright, i think i am repeating myself again... time to go to bed for tonight...

Little People...

today was my son's first day of kindergarten.  it was great! it started with me waking him up... he told me "there is NO excuse!" so i asked "no excuse for what, baby?" and he responded "there is NO excuse for waking me up while its still dark out!"  i was so proud... i know it sounds odd.  but my son is a mini clone of his daddy, both in looks and attitude most times.... this morning was all me tho.  i am the one who can hibernate, and surely do not like waking up early... once i told him it was his first day of school he reluctantly rolled out of bed.

it was sprinkling, or as i like to call it california raining, this morning... we left early to make sure we would be on time.  we did, in fact we were really early... i guess everyone else slept in because of the holiday yesterday.  i know that before i got sober you shouldnt expect to see me before 9am the day after a holiday unless you were my roomate or i had to work... and even 9am was early most times back then...  i had planned to play at the park next to the school if we were early... i didnt take into account it might rain... so we had a few issues because we got stuck waiting in the car until the sprinkles let up and it got closer to time to say goodbye.

when it was time to line up for him to go into class he was ready!!! made sure his sister wished him a good first day, flashed an "i love you!" to daddy and i... then he was off into the classroom.  i thought i would cry watching my oldest embark on such a big step, but i didnt.  at first i thought i was kinda out of tears recently because this melasuckanoma crap... then i decided to be more optimistic... mother nature was shedding enough tears for all of us parents saying goodbye to our little people as they took this HUGE step...

my daughter, who is 3yrs old, missed her brother alot.  she enjoyed the time we had alone at first because it almost never happens.  but by mid-day she was ready to go get her brother... was very upset with me for not just going to get him.  she finally fell asleep while i was on the phone with surgical nurse for my pre-op call.  of course, that was only about 20 mins before we needed to leave to grab her brother...

the nurse who called took all my info... but was unable to answer my questions because she didn't have the orders.  makes me nervous... but at the same time i feel like ive been living in a consistent state of nervousness since may.  she asked if i had any anxiety, or depression... umm, yeah... being told you have cancer growing on you doesnt exactly inspire a party attitude... or at least it didnt for me.  i had spent so much time partying when i was younger that i burnt out on that too.  i guess if i didnt have good reason to remain sober (like my gorgeous family) i might have gone back to being a lush (or whatever other phases i went through).  but now i have every reason to fight... and like my husband says "remember you are a strong woman, and a fighter... even if only by marriage."  when he and i first met i was a weak, defeated version of myself... he hasnt let a day go by without doing his best to help me change that.  and if i do say so myself, he's done a pretty good job... i now can see my own strengths after some patient reminders they were still there.

all in all it was a fantastic day!!! i just wish the nurse would call back to answer my questions since i already answered all of hers... but i am trying to be patient... and tomorrow is another school day for my little man... another day for my princess to get used to mama time... again, should be another good day...

Anxiety...

i have my appointment set for friday sept. 9th to resect the original site.  and perform the sentinel node lymph biopsy (snlb).  i think i am extra nervous this time because i was hoping it was over... my first dr to diagnose the melanoma was a dermatologist (derm).  he specialized in the mohs procedure for the removal of skin cancer.  sounds great, right? except he was an awful communicator.  when i asked questions he either ignored them or made light of my concerns... not what you are looking for in a dr when dealing with cancer in any form.  so i sought a second opinion.  i was unable to find a new derm with skin cancer experience that my insurance covered. 

i tried a new approach... i found a female oncologist (dr s) who has special interest in melanoma.  i thought that would solve everything... it did not.  apparently an oncologist is more like my treatment manager than the actual dr treating me.  so i ended up back at the original derms office for my biopsies... but i dont see that derm, i see his physicians assistant (pa).  i feel more comfortable with the pa who doesnt make light of my concerns.  since the onc doesn't biopsy and i will more than likely be a pin cushion for the next 2 yrs i am making the best of this situation.

that brings me to the majority of my anxiety right now... the new onc surgeon.  he is the dr my onc sent me to for a second opinion of the initial site.  he is very nice, patient and informative.  i will refer to him as dr b.  i saw him for my consult and he determined it is necessary to perform the resection as a wide local excision to verify all margins are cancer free.  and perform the snlb at the same time since the mohs didnt allow for final depth measurement on the intial tumor.  at first i was concerned that the snlb would not do as it is supposed to since the site has already been operated on.  dr b says that "it is not the most desirable timing, but its better than nothing." 

i've been thinking alot about that... and the snlb is supposed to follow drainage paths into the lymph system from the initial site then the dye will settle into the sentinel node (or first node to attract the dye) because in theory that would be the node infected with cancer if any.  makes sense... but if the area has been operated on those lymph channels may not be the same as they were.  so they might just inject me with some radioactive dye for nothing.  i am trying to remain level headed about it, but it isn't easy.  dr b already makes me way more comfortable that the original derm, so thats a plus.  and i think i would rather be paranoid and proactive than passively waiting because i am paranoid... hope that makes sense.

i will be going to the hospital on sept 9th... but that brings me to the part of my anxiety of the unknown.  i really didn't like the original derm at all... but that experience had some up-sides to it. 1) the whole mohs procedure was done at the derm's office (NOT a hospital).  2) i was new enough to this to not worry myself with the details.  3) the derm's office is right up the road from me.  but now, 1) dr b performs the procdures at the hospital.  2) i have worried myself silly with "what ifs?"  3) and the hospital is down south a bit from me.  4) i thought i was at derm's office forever for the mohs (something like 5 1/2 - 6 hrs), but i've been told to arrive at the hospital for 9am and be prepared to be there til around 6pm.  5) the morning of the 9th i can't eat anything... but i am supposed to be in the hospital as a cooperative patient.  i don't know about yall, but to me that is lame.  i will be in the hospital for an entire work day, but may not eat the whole time... 

then there are the differences between a derm's office and the hospital... at the derm's office they put you in a room with a tv so you can watch a movie.  not that the movie was so distracting, but it helped.  i chose 2 comedies to watch because i wanted something mindless to focus on.  and the room was private, so it was either just me or the derm and his team were removing the tumor.  i wasn't able to watch the movie while they were working on me, but thats because i am squeamish.  the tv was angled so you could see my reflection, so i didnt watch the movie while they were with me.  but having some background noise was much better than just the sound of their equipment because the procedure is only done with a local anesthesia.  i doubt i will have a tv for the next procedure at the hospital.  after all it is a hospital.  where as the derm not only works with skin cancer patients, but cosmetic patients too... so his office was plush.  not usually a word i would use to describe a hospital...

even tho i am trying to remain positive i feel like my anxiety is getting the best of me... i feel like once i get a handle on my anxiety about one incident i get thrown another more complicated thing to be anxious about.  since my parents are hippies i know that lacking certain b vitamins can effect your mood and anxiety levels... so i was going to buy a multi-vitamin (because i am also lacking vitamin d, calcium (dont much like milk), and magnesium), but then i vaguely remembered dr b's office saying that multi-vitamins can thin your blood... and i am not supposed to take anything that will thin my blood til i get the all clear.  i tried to get ani-depressant/anxiety meds from my gp (general practice dr), but everything they try to prescribe has side effects i am not willing or able to deal with.  but my hubby has a friend going to med school, so we asked him what i should do... he recommends prenatals because they dont have the ingredient that will thin my blood.  i am waiting for a return call from dr b's office to verify that is ok.

in the meantime i just sit and wait and wonder... and the more time i have to get lost in my own head, the more issues i think i create for myself.  i know this about myself, but still havent figured out how to change it.  if i had then i might not be lacking in so many vital nutrients... i might be able to actually eat a regular meal without my tummy practicing gymnastics... but until that actually happens i continue to give it my best to remaining optimistic.

It's Complicated...

since this is my first post i figured "It's Complicated..." is an excellent title.  if you are reading this its probably because Burnt Out Survivor Story got your attention.  i titled it that for a few reasons... 1-i burnt out a few braincells during my experimental phase of life.  2-because melanoma has been linked to uv exposure (from the sun and tanning beds). 3-melanoma is also where the survivor part comes from.  maybe it was one of the tags i hope to be able to attach to this blog so it can be found on a search that catches your eye.  that, or you are a personal friend of mine already.   but however you found my ramblings you are here... let me warn y'all that i am an odd chick... lmao.  i tend to write in all lowercase since reading ee cummings in highschool, well him and tom wilson (the author of ziggy comics).  i think in circles... so sometimes i jump around or seem to be completely off topic, but in my head i am just following my thought pattern. 

i am writing this blog in hopes it helps me make sense of things.  or maybe helps someone else.   i have so much going on in my life right now like most do.  but the things that truley have me rattled are health issues.  i was diagnosed with malignant melanoma stage 1 in may of this year.  i was pretty frightened and in shock after my diagnosis.  at first i didnt want to learn anything about it.  my mom was already a melanoma survivor and i had managed to be concerned and informed at the time of her diagnosis probably close to a decade prior.  but in reality, a decade prior, i was a mess... i was in the middle of my experimental stage in life.  so i absorbed just enough info to be able to be empathetic and sympathetic for my mom.  so when i was diagnosed i almost instinctively went to "my happy little land of denial" that i had dreamt up during my experimental stage.  back then, it was my way of disconnecting... knowing i was doing something wrong, but submerging myself in "my happy little land of denial" where i could pretend i wasn't.  does that make sense?

since fathers day in 2005 i have been trying to rebuild relationships i damaged in those days.  and i hadn't seriously even considered using "my happy little land of denial" to hide behind... until that diagnosis.  and even then it just happened, pure reaction... not well thought out planned action that i had been trying to actualize for myself the last 6 years.   i will go into further details on that experimental phase in a later post.  since my instinct was to deny i was just diagnosed with cancer a mere three weeks prior to my 32nd birthday, i didn't ask questions.  i simply made the appointment half listening to what the physician assistant was telling me.  not too bright.  because after the shock wore off and i admitted not really remembering much from when my mom went through it i attempted to gather info online.

talk about a bad idea... especially for a person with an overactive imagination like myself.  i scared myself into crazy... granted it wasn't far to go, but still.  my doc performed MOHS surgery to remove the tumor.  i didn't know the name of the procedure until the day it occured.  so again, like an idiot, i researched melanoma online with MOHS as treatment.  i was already well past crazy at this point.  and i found sites that said MOHS is great for most forms of skin cancer, but not melanoma... and i had the surgery on a tuesday, and scheduled reconstruction for the area that friday.  the day of MOHS i asked the doc if it was possible the tumor was deeper than initially thought would that change the stage of the cancer? he said yes.  then started the procedure.  i told him to be liberal in removing it, i wasnt worried about a scar.  he ended up coming back 3 times to take more because there was still evidence of melanoma.  i then asked if it was deeper than biopsy? he said it was, but refused to answer how much deeper.  i later learned that MOHS is performed in a way that doesnt allow him to answer that question, not that he could explain that to me.  he even made the comment that i was more likely to die being hit by a car leaving his office than because of melanoma.  so tuesday night there was no sleeping... only non stop concerns flowing through my mind.  how could a doc say that to me? especially when the internet says how deadly, sneaky, and quickly melanoma can spread. 

by the time i went back for the reconstruction of the area that friday i was a major wreck.  barely any sleep.  concerns i would miss my children growing up, or all dreams for my future were pointless.  i had just finished school for harley davidson motorcycle mechanics program, but wasnt feeling like i would ever do anything with it.  i had just undergone surgery to remove one of the sneakiest forms of cancer.  and i had let my mind get the best of me.  i was thinking things like "if this doc thinks melanoma is something to joke about how can i trust he was aware enough to remove it all?" or "the internet said melanoma can almost be undetectable with MOHS because the procedure freezes sections to be tested and it can appear to be gone when its really present in miniscule amounts." i think at this point i was my own worst enemy... i freaked out on my doc the day of reconstruct and told him his communication skills were awful, to which, he agreed.    he reconstructed the site, and i vowed never to return to his office.  i'll go into more detail on another post someday on how i ended up right back at that docs office.  but for now im trying to explain the complications.

i wish i had just asked my mom more questions instead of frightening myself with the internet. after all i consider my mom one of my closest friends, especially since i had kids of my own. but she has had 4 heart episodes in the recent months, 2 of them requiring a few days stay at the hospital.  and one of those hospital stays was less than 12 hrs after i told her my biopsy came back malignant melanoma.  so i try to protect my mom from stress.  but we did learn that her 3 major arteries to her heart have blockages.  the catch is that insurance doesn't care until the blockages are over 70%, and all three of my mom's were over 60% but under 70%.  so she was given a strict diet to follow.  lower her cholesterol, red meat intake, and salt intake... mom used to salt hot dogs, loved potato chips and almost anything salty.  plus my parents are total meat and potato people, and by meat i mean beef. and given a presciption for excersize.  so i will occasionally blog about moms health too.

i married an amazing man.  but this diagnosis was very hard for him to accept too.  he didnt seem to want to learn anything about what was going on with my treatment.  i learned later that was just his fear.  and i will go into more detail on life as a married woman dealing with newly diagnosed melanoma later in the blog.  thats just too complicated to get into tonight, or this morning.  and since i just noticed its already 3am i think i need to wrap this post up... my son's 5th birthday party is later today at chuck e. cheese.  sorry if i didnt wrap this up very well.. maybe i will get better at that with time, or sleep... lmao.  i will try to post a "It's Complicated 2..." very soon to finish explaining why i am writing, and what i hope to accomplish...  but for now i need to go force some sleep so i can keep up with the kids tomorrow.