School...

my son starts school on tuesday! we went to his kindergarten orientation this morning... i was very pleased he got the teacher i was hoping for.  he is my oldest, so i based that hope on the school's website... his teacher was the first to update her page for this upcoming school year, as well as having a few quotes and proverbs about patience and teaching.  my son was extremely nervous... but i think he will be right at home after he gets used to it.

during the orientation we were informed that next friday's assembly was open to the parents so we can ALL learn the school song for school spirit... i began to cry.  next friday is my surgery date.  originally they wanted to do it today, but i said no because of orientation.  i didnt expect activities so soon... it broke my heart to think i might not be able to go learn the school song.  my hubby was very understanding, and tried to reassure me that if i wasn't able to be there he would.  and that is fantastic for my son... so why am i so bummed out about it?

i suppose thats the part of me that wants to be there for everything... i dont wanna miss a thing.  but it looks like i am going to have to... and i am going to have to accept that sooner than expected.  plus, i tried to ask his teacher if i left sunscreen could she help make sure it is used before lunch.  i mentioned that i understand it can't be applied every time they go out... i was just hoping that before lunch (and the mid-day sun) it could be done.  the teacher asked "can't you just sunscreen him in the morning?" i gently explained i will, but by lunch it will no longer be effective.  her solution was to leave the sunscreen at the office and teach my son to go get it applied after lunch.  she completely missed my concerns - they eat lunch outside!!! then have maybe 15 mins of recess before returning to class... i am NOT worried about that 15 mins, i am worried about the total 45 mins of outside time in the mid-day sun.  besides, i am teaching both of my kids to sunscreen themselves... i just don't want a bottle of sunscreen exploding in my son's backpack.  and i made that clear, but it didn't seem to matter to anyone but me.  i am very frustrated right now...

i am hoping that his teacher was just extremely busy meeting her new students and their families.  and maybe next week she will realize how important this is.  and if she doesn't, then what? am i being unreasonable and paranoid?  both my kids glow... and since my diagnosis even more so because of the sunscreen we use before going out during peak sun hours (10am - 4pm).  i nearly had a panic attack on my parents for my daughter getting slightly sunburnt while they babysat her... it seriously is very upsetting to me.  my mom was first diagnosed in her late 30's, early 40's... and my diagnosis was less than 3 weeks prior to my 32nd birthday.  i don't want my kids dealing with this in their 20's or EVER for that matter...

i suppose all i can do is see how things go once school actually starts.  and make sure my son is a sunscreen expert by then.  he is only 5 yrs old, so wish me luck... he does a decent job, but is easily distracted so sometimes the sunscreen ends up everywhere.

i just finished school last year in late october.  my husband and i both did (well, he finished in december).  the plan was to return home, he would find work, then i would.  we thought it was going to be easier than it was.  we had gone to school for motorcycle mechanics... even tho the school warned it would be difficult to find work in the "off season" we thought we knew better.  we live in san diego, there is no real winter.  so no real riding season, people ride their bikes all year long.  but that is not true of hiring... so it took awhile for my hubby to find work in the industry.  then my daughter turned 3 yrs old (the magic age for head start programs).  so i was getting set to look for work also... but then i was diagnosed with melanoma.  and now i have these procedures scheduled... so i will need recovery time.  but i had specialized in harley davidson at school... and had done their phd program... but those phds only remain valid if you began working in a dealership within one year of school.  doesn't look like i will be keeping my phds.  and i worked my butt off for those...  i had never done anything mechanical before school, and i worked very hard to do well there... and to not give up on it just because it wasn't easy.  and now i am feeling like that hard work isn't going to benefit us like we planned.

i am not an extremely religous person, but i would consider myself spiritual.  so i included the serenity prayer because it has helped me in many instances... and i am hoping this is one of them...

Another Call...

i am begining to not like my phone anymore... i keep getting these calls that make me be responsible.  today it was from the hospital.  they are having the surgical nurses call for a phone consult next tuesday.  then they can go over everything with me.  but i did find out that i will be asleep according to the woman who called today. 

i guess i will know more after tuesday...

but now that i know i will be asleep i am no where near as nervous as i was.  i had wanted my hubby to go with me because i thought i was going to be awake like i was last time... and no one can make me laugh or feel better the way he does.  granted, my mom is also willing to go with me, can make me laugh and has always been there, but its not the same...  i had made a stance, demanding my hubby by my side... then the call came letting me know i was being put to sleep and i tried to let him off the hook.  i thought he would be pleased, but i think it was actually frustration.  i made him deal with this with me... and then like someone flipped a switch i am letting him off the hook.  we have talked alot about this... he is as scared as i am.

but we know we are doing everything we can.  so that helps some.  and i hope he realizes why i seem even more bi-polar than normal.  i know he does... just with everything going on i lose sight of that sometimes.  i am truly blessed to have him by my side. 

and my parents are also awesome to have... they have been helping with babysitting whenever they can.  and they have always been there.  just waiting for me to wake up and become the responsible "young" (even if i don't feel young) woman they raised me to be.  over the last 6yrs i have definetly made some improvments... i thought sobriety matured me, but in reality - not really.  but i certainly feel this has... i can't be selfish, even tho i may wanna be at times.  i can't pretend none of this is really happening.  i have to deal with it.  i have to think of everyone else involved in my life. 

i think that is my silver lining out of this awful experience... i am finally learning to deal with the bad, as well as the good.  i even called a bill collector to explain why i couldn't pay them... before i would have just dodged their phone calls.  ignored thier letters.  and when they started calling my parents house looking for me i would tell mom to tell them "she is an adult, and does NOT live here."  partially true, i don't live there... but the whole "adult" part i wasn't so sure of.  but now i know i am working on it... calling bill collectors, trying to not be so judgemental, and talking instead of yelling. 

so remaining optimistic... maybe melanoma will help me to become a more mature and responsible member of society.  i guess that only time will tell...

Scars...

i keep forgetting to specify the location of where my melanoma was discovered... it was my left shoulder blade / upper back area.  the scar is somewhere between 5 1/2 - 6 inches long.  i am not sure what it will look like after the next procedures, or if there will then be multiple scars... i have had 5 punch biopsies since may.  2 of those were from the tumor bc it wasn't tiny.  the other three were done on my first follow up in july and fortunately came back as compound nevi not atypical according to the derm's pa. 

one of the those recent biopsies is beginning to come back very DARK... but i will discuss that with all my drs because i am not sure which one i should direct that to... i tried to get a pic of that too, but i seem to reflet too much for my camera to get a clear pic.  its ok tho, i am used to it.  i have always glowed, or else i was bright red and sunburnt... until i peeled and began glowing again.  i never really held a tan very well.  now, i wish i had never tried... sa la vie.

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.

Heliophobe...

Right after my initial surgery to remove the melanoma my nephew was turning 3yrs old.  he happens to share his birthday with our country... at first, my sis in law was going to throw either a beach or park party.  i explained i wouldnt make it, but would send the kids with nana and paw paw.  she wasnt sure why i wasnt going to go.  i explained i am afraid of the sun right now.  she knew what was happening as far as my treatment and diagnosis... but she still started to poke fun.  she said "what? are you going to become agoraphobic now?" to which i replied "no.  i am not afraid to go outside." (now i know wikipedia says agoraphobia is an anxiety disorder defined as a morbid fear of having a panic attack or panic-like symptoms in a situation that is perceived to be difficult (or embarrassing) from which to escape).

but that short conversation got me thinking... what am i? that's when i discovered i am a heliphobe.  according to wikipedia-
Heliophobia has two meanings:

• in psychology, heliophobia refers to a morbid fear of sunlight.^[1]
• in medicine, heliophobia (more commonly photophobia) refers to an excessive sensitivity to sunlight.

i definetly fit the psychological meaning... and really hadn't looked into the medical portion yet to determine if thats accurate as well.  i do know that everytime i go out now during peak sun hours (10am-4pm) i get a itchy red rash.  i know some of you are probably thinking "get over it! wear sunscreen!"  i wish it were that simple... i know its an irrational fear, but i can't make it go away.  i try to wear sunscreen now, and it makes me break out like a tweeker or a tween- neither of which i am.  i even went to original dr once because the surgical area was breaking out and i had convinced myself it was a staph infection.  long story short, the physicians assistant treated me like a crazy lady because it was just acne.  i am 32yrs old, never used to break out like this... might get A pimple once a month during my cycle.  but now, i am a mess...

trying to focus on the silver lining... i have learned some valuable lessons about being so judgemental.  you never know what someone else is going through.  people now look at me like i used to look at others, like no good drug addicts in the midst of their addictions.  i suppose i was always so judgemental because of my past... i used to try almost anything... and if i liked it i was doing it until i didnt like it anymore... but in 2005 i changed that.  i sobered up... and when i did i became very judgemental and intolerant.  i had gone down the path towards destroying and alienating everything i cared about.  and i had no patience for others still on that path.  i would judge people on their surfaces, never taking the time to hear their stories...  i have since vowed to work on that... its no fun being judged for something that is happening to you, that you have little control over.  and to look at me, you wont see anything wrong.  you might see my scar... but will probably have no idea what caused it. 

you might see some signs of heliophobia if you know what it is... people a few shades paler because of so much sunblock, large brimmed hats, long sleeve shirts on sunny days, etc... again, i know i used to look at those people and assume they were tourists (because i live in gorgeous sunny san diego ca).  but now i am one of them...  again getting those disapproving looks i used to give...  please- before judging like i did, think about it... not everything is so black & white.  you never know what is going on in that gray area...

a couple of weeks ago i was finally getting past that fear.  i had actually gone out twice forgetting a long sleeve shirt or sunscreen.  when i realized i didn't panic, i was just cautious about sun exposure.  then the call came from the new surgeon.  and the fear came back with a vengeance when he mentioned "satellite" growth.  i have an appointment for friday sept. 9th to perform the resection (wle) and snlb.  they told me to be there for 9am, and be prepared to be there until 6pm.  i am not looking to forward to it.  plus, as i got out of the shower, i noticed one mole that was taken off for biopsy is now coming in very DARK...  but i am doing everything i can to fight this, and get over my fears.  i am hoping that after i pass through the treatment phase i will be able to relax again, but only time will tell...

Caught Off Guard...

i thought i was finally getting a handle on myself since my diagnosis.  i had just gotten past my imagination running wild with my fears.  i was getting to the point that, not only, was life getting back to normal... it was getting to a more organized, efficient, and comfortable normal.  my son starts kindergarten in a couple of weeks, we were starting to gear up for school schedule.  we just celebrated his 5th birthday last week at chuck e cheese.  that is when it happened... i was Caught Off Guard...

i had just run to the car to get the coupons i had forgotten there.  when i was re-entering CEC i got the call.  it was from a new surgeon.  my insurance apparently approved "resection" that my new dr recommended in june.  she had also recommended scans for 3 different areas, they only approved one area -my lungs.  i had the scan, and it came back clear.  the other 2 areas were denied by my insurance.  i had assumed after those denials and clear scan the resection wasn't going to happen.  i was wrong!

but here i was trying to begin my son's 5th birthday party, standing inside CEC on the phone with a surgeon's office.  the whole experience was kinda surreal.  the lady who schedule was very sweet and explained they had a cancellation and wanted to get me in ASAP.  so last friday i went to meet the new surgeon.  before i went in i had decided i didnt want them to do anything.  i just wanted to meet him in case there was any need to surgery in the future since my last experience was a bad one.  the last dr had a really awful bedside manner and poor communication skills.  but, by this point, i had assumed i wasn't going to get approval from my insurance to proceed any further.  so i had made my peace with the situation... decided to try and remain calm and trusting that the dr got it all the first time.

then that phone call... i told my hubby i didn't even want to go meet the new surgeon at first.  but he insisted i needed to go listen to what he had to say.  i begrudgingly did...  and the new surgeon says he wants to go back and perform a wide local excision (wle) AND a sentinel node lymph biopsy (snlb).  he says the wle should have been performed in the first place to achieve the proper margins.  and with the original biopsy breslow depth being .72mm without final depth measurement that the snlb also should have been done earlier. 

i am to melanoma experience... so i listened as i promised my hubby i would.  i heard the surgeon say he saw "satellite".  i knew as soon as i heard that i was no longer just a listener... i was going to have to be a participant.  i have a beautiful family to fight for.  and my understanding of "satellite" is suspected cancer growth within a certain distance of the initial growth.  i asked if the snlb can be performed after the mohs.  the surgeon says it is not the most desirable timing, but it will work.  i left his office in shock again... didn't ask any questions about scheduling, just left... quickly.

i realized i had not asked about the scheduling, but not until it was too late on friday to call.  so i called on monday.  the surgeon's office says they are hoping to have scheduled and completed by the time my son starts school.  i was not ready for that either.  it had taken so long to even see him for a second surgical opinion... but at the same time, i think thats why they are trying to hurry it along.  i just hate being caught off guard... and since they are trying to expedite things as much as possible i can look forward to that again soon. 

i will write more by next wednesday... or when i hear a date for these procedures... but for now i am going to join my hubby playing the wii... i could use some fun, mindless entertainment...

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.