Wednesday, August 31, 2011

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.

Tuesday, August 30, 2011

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.

Sunday, August 28, 2011

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:
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...

Wednesday, August 24, 2011

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...

Wednesday, August 17, 2011

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.