Saturday, December 10, 2011

Unexpected Day...

i have been feeling pretty weak emotionally... not sure i could make the choices i need to make... basically feeling super overwhelmed.  then today comes along and shakes everything up again... but for the better.  i had seen a post on one of the melanoma bulletin boards i look to for answers... it was for Cancer 101, and a planner they sell (for $20) that they personalize to your specific cancer.  they also work with you if you are unable to afford the cost.  their site was http://www.cancer101.org/.   i called and asked about the melanoma planner to be told that it was temporarily out of stock, but would be mailed to me in 4-6 wks.  i think that was maybe 2 wks ago... and i got the planner today.  it is really awesome! so full of info, resources, and charts to track treatment or symptoms.  i am really impressed.  they also sent an accordion file organizer with tabs for pathology/test results, research, patient education materials, and more... 

"pretend" sent me an early text saying she admired me for making these difficult decisions, and basically just surviving all these changes recently.  then she went on to blog about it too.  it was so hard to read through the waterworks pouring out of my eyes.  but i really needed to hear everything she said.  i suppose that is how people end up becoming close friends when they know without you ever having to say.  its kinda funny we rarely talk on weekends anymore because we are both wives and mothers... but for whatever reason this particular morning we did... and i needed to hear everything she said... i was beginning to doubt myself, and my strength to make important choices...

yesterday, my hubby and i were being very snappy with eachother... which any married person will tell you is very normal every once in awhile.  but today we were able to work past that and actually not be irritated with each other.  honestly, there are some days there is nothing you can do without consistently rubbing each other raw... so today to be such a polar opposite is very nice.  those days aren't always so easily worked through. 

and the cherry on my saturday morning/afternoon-ish time... my dad randomly called and said get the kids ready and he will take them to the park.  the kids love their granparents, so they were very excited at this idea... a little bummed nana wasn't coming (or working on dolls, i think that would have been acceptable to them).  that is how i am actually able to blog in the middle of the day on a weekend. 

i have gotten so used to my unexpected days being all bad news i kinda forgot they can be all positive too.  and it was nice to have that reminder when it was so desperately needed.  thanks again "pretend" i don't think i can thank you enough for your encouragement and support, even from 3,000 miles away!!!

Tuesday, December 6, 2011

OCD...

Obsessive–compulsive disorder (OCD) is an anxiety disorder characterized by intrusive thoughts that produce uneasiness, apprehension, fear, or worry, by repetitive behaviors aimed at reducing the associated anxiety, or by a combination of such obsessions and compulsions.  thanks to wikipedia for the definition.  this post is for papa "pretend"... he has been reading my blog and discussing it with "pretend".  after reading my last post he said i seemed slightly ocd about treatments... and he is 100% correct.  i find myself sitting at this computer researching my options almost non stop... i know this cant be good for me... i just cant seem to get past it.

in fact... my first name begins with a d... so maybe i dont have a disorder, i am just obsessive compulsive me.  when i was 16 yrs old i worked a bagel shop as a sandwich maker... this company's name tags said "totally completely obsessed" and then your name with a little icon of a bagel baker.  my parents thought this was hysterical... and swore they must have known me to put that on my name tag... i insisted it was on everyone's name tags... my parents persisted with their harrassment by saying "yeah, uh-huh... sure they do".
so you can see this diagnosis is not the first my ocd has flaired up... but honestly, if you dont know me well you might assume it is. 
back to my obsession- treatment options... i was so dead set against interferon... but it seems to be my only option besides watch and wait.  it frustrates me that this disease is as sneaky as it is... my dr tells me i am stage 3b with high chance of recurrence... but also that i am ned (no evidence of disease).  unfortunately this particular cancer can be dormant in your body until it decides to attack... so those scans didnt show anything, but that doesnt mean its not there... its like it has internal organ camouflage... wth.  so i could watch and wait because as of now i seem disease free... or i can agree to a year of interferon.  and dr s had a valid opinion saying that i am relatively healthy now, so this is the best time for me to try interferon as an option while strong enough to combat the side effects.  not to mention i have every reason to fight.

at this point, i cant believe im saying this, but i think i am going to agree to interferon... i figure now is the time to try it... instead of after this disease decides to come alive inside me and i am already sick.  besides, i figure if i lose weight as a side effect i am alright with that... i have seen patients lose average 20 - 30lbs in the first month of being on interferon.  and that puts me at my goal weight.  not the best way to lose it... but once its gone it will be easier to keep off.  i know it sounds kinda morbid, but hey, thats my silver lining for now...

i was hoping to be part of a study for stage 3 patients that tested ipi vs. interferon... but i found the treatment center doing the study does not take my insurance.  i thought these trials were covered because they are using you as a guinea pig... apparently i was wrong.  and that really upset me.  i thought trials were to find a cure, or at least more research towards said cure.  aparently not... they bill your insurance, then profit off the research you made possible... disgusting.  why do they get to double pad their wallets at someone else's misery?  i was anxious about the trial because i wanted to help... at least then whatever i put myself through in the name of treatment could benefit others in my position... to find that the trial too is part of the greed machine...

thanks papa "pretend" for the topic idea... and thanks everyone else reading this too.  i just hope my ocd, and crazy ramblings help others too.  and i really appreciate the feedback you guys have given me over the past few months.

Saturday, December 3, 2011

Decisions...

that used to be a philosophy i subscribed to... and i still tell those stories from time to time... but its because i learned from them.  and i am all for anything i learn from.  which brings me to what is on my mind now... i saw my oncologist on thursday.  dr. s wants me to meet with the surgeon dr. b to discuss a lymph dissection... i will see him next wed.  but dr. s also wants me to do a year of interferon... she says because of my age, family, and stage of disease that she feels it is the best course of action for me.  she had once mentioned a new way they infuse the interferon during one of our previous meetings... but when i asked about it this time she said she would rather i "stick with the tried and true method." 

that confuses me greatly... "tried and true method"? the same method i keep reading about how hellish it is... hmmm... its easy for the dr to say this, she isnt the patient... she states i may just feel like i have the flu the whole time i am on the interferon... then there is a trial being done near me... its actually closer than the cancer center i currently go to... but the trial is for interferon vs ipi.  i have read great things about ipi.  but i could still end taking interferon... and if i did, i wouldnt be able to choose to stop if i felt it was necessary... i would be at the studies mercy... i wouldnt want to drop out and potentially harm a study needed to advance in melanoma research.  not to mention i would need to decide asap... apparently if i decided to avoid surgery and go with the trial i would need to start treatment by december 28th... my follow up with dr. s when she expects a decision is december 29th.

also on thursday was my son's first ever field trip... i attempted to be there for it... and i was able to walk with his class from the school to the christmas tree... i was even able to hang out while they waited their turn to add their handmade ornaments to the tree, and see santa.  i was almost able to do it all... but not quite... i had to leave when they were the next class up to make it to my drs appt.  but my dad was able to fill in for my hubby and i.  he made sure he even got pics for me.  little man was pleased i tried my best to do both, but ultimately understands i had to talk to my dr.  and princess was pleased because she also got to sit with santa. 

in the end, i know the choice is mine... but so many things factor in as a wife and mother.  my hubby is the kind of person who was raised to not question drs... and i was raised to be informed about my decisions... usually meaning to have a ton of questions and not minding if i bothered the dr by making them explain, after all it is part of their job.  my little people are 3 1/2 & 5 yrs old.  so being sick for a year will be very difficult while princess is still with me basically 24/7.  so i am leaning towards not wanting interferon, like i have already stated in previous posts... but at the same time dr s brought up a very valid point- with my age, health, stage, and family it would be a decent decision.  so i have alot to think about right now.

Thursday, November 24, 2011

Something to Remember...


i know when you have alot to stress about this is harder to remember... but it is so true.  i have put myself into alot of bad situations in my life... but i am thankful for each them because i learned from them... including this damn disease.  i have heard it alot in the melanoma community... or any cancer community really... this disease gives you a new outlook on everything.  you find yourself getting irrate reading everyday posts on facebook where people are whining about the little things... i kinda feel like this disease blessed me with the wisdom of an 80 yr old woman that has learned what is truley important to her, and embraced it.  seriously, i get irrate at those mundane posts too... but then i find myself thankful for them because they remind me i know what i want in life now.  so i get frustrated by them less, and less...  think about telling an older woman bad news... they handle it well... and its not that they aren't upset by it... its like life has calloused them to hearing bad news... and the lucky ones have used that to learned to be thankful for everything that brought them to that point- the good and the bad...

i am lucky to have the family that i do... and the friends that over the years have become family.  especially my amazing hubby! he makes me speechless... we have been together since june 05 and he still gives me butterflies... he is so strong, and i wasnt when we met... i feel like his strength has just kinda worn off onto me... just by being with him i am stronger.  and i am human... so usually i show that by arguing with him.  sorry baby... it seems like every holiday we just want everything to be perfect so we argue.  he is the one who cooks for everything... i have only cooked for 1 holiday.  i know most women arent blessed with a husband who cooks anything for them, nevermind nearly everything!  at one point, the kids would not eat anything i made for dinner, or any meal really.  but if he made the same thing the kids would eat seconds... it was very frustrating, but i am so lucky those were my frustrations then. 

princess and little man spent the night with my parents last night... they will be returning home in time for thanksgiving dinner.  i am thankful that my parents help as much as they do! i have always heard "it takes a village to raise a child."  i agree, and am so thankful others in my life do too.  the kids love having nana and paw paw so active in their lives.  and it is very helpful to my hubby and me.  my hubby is a very involved parent, but he does work alot... so its nice to have back up when daddy is out earning to keep the roof over our heads.  and the little people i am so thankful for!!! i never thought i wanted kids when i was a younger adult... then i met my hubby... and i knew he would make an amazing dad, and help make me an amazing mom... not to brag, but i was right ;)

i am thankful for the friends that became family over the years.  i can call them up being a raving lunatic and they understand... and they help to calm me down.  i recently watched an episode of gilmore girls that showed the main characters best friend completely freaking out about her baby being past due... it was hysterical! and it made me think of a few of my friends that have been there for me when i was being insane... i am lucky to have them.  probably my closest friend is actually the farthest away... we will refer to her as "pretend" because princess always blames "pretend" for anything thats going to get her in trouble.  then we have auntie tiger here... but she is crazy busy with 2 jobs and life... when we do get time to catch up its like no time has lapsed since we last talked... and a couple other friends also back east that i miss dearly.  so many friends i am thankful for.

try not to lose sight of the spirit of this holiday all year long... i think that is the statement was i was fumbling on earlier... when i was rambling about an old lady.  i figure if you read this far maybe i should clarify that was what i was trying to say earlier.  and on that note... i am going to see how long it takes to get kicked outta my hubbys kitchen...  happy turkey day!!!

Friday, November 18, 2011

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...

Saturday, November 5, 2011

Exercise...

yesterday i went to the health food store... i always thought i ate pretty healthy.  i was a vegetarian for a decade... from 16 yrs old - 26 yrs old.  then i got pregnant with my little man.  we actually knew i was prego when my hubby, at that time my honey, asked "what do you want for dinner?" my response was "pork chops" and about 11 different side veggie side dishes... and since i hadn't wanted meat in so long it was a dead give away.  so even when i began eating meat again because my body was craving it i still was very cautious about what i ate.  i added a ton of white meat to my diet, but still very little red meat.

so shopping yesterday was an eye opening experience... i thought i ate healthy before... but since i have researched melanoma, and cancer in general, i have read about lots of foods that are better for me.  i bought most of them.  tons of fruits and veggies.  i even bought some naked juices... and i dont even like them, or at least i didnt when i tried them years ago.  i read somewhere pomegranates are really good for me... i dont like em, but i bought em... i am hoping to start juicing... my mom says she has a juicer.  and anyone reading this with some good recipes please comment with them.  i need direction... and since most people willing to give direction also want money i am trying to figure this out on my own... or with the help of you all.

beside the dietary changes i am also trying to make other lifestyle changes... but i have never excersiced for the sake of excersicing.  i was always an outdoor person.  i loved to go hiking... and i used to bicycle everywhere, including to and from work (4.44 miles one way) for about a year.  now i am afraid to go out during peak sun hours... so i am trying to figure out what i can do to get back into shape.  my little man just got a wii for his birthday this year... i was using it alot before surgery... but since they sliced both underarms i haven't found any motivation to try it again.  i am hoping to start that soon, and maybe even upgrade from just wii sports to actually using wii fit.  the only problem with that is we dont own a wii fit... but i have a friend who does, and i am hoping to borrow it.

this is my newest scar... since the resection.  i didnt get pics of the snlb sites yet,
i have been waiting til they heal more.

any suggestions on juicing or indoor excersize would be amazing... i need guidance... in the meantime, i make due by aimlessly looking all over the internet.  so far i think i am doing my best to make these changes... but if anyone can help with some motivation or ideas it is appreciated... thanks in advance... as you can see i have good reason for wanting indoor options for excersize.

Wednesday, November 2, 2011

Anger...

i woke up this morning... and i am not a morning person to begin with... i am still exhausted from halloween.  so i am even more cranky than usual... the morning did not go well in my house.  and that just seems to flavor the day...

my hubby has started his new job, been there about a month... right after he started one of his co-workers got hit by a car.  so my honey has been working crazy hours again... we thought that would stop when he changed jobs, but it didnt exactly work out that way.  he is feeling "overworked", for lack of a better description... don't get me wrong, we need the money... and he is very aware of that, and willing to do everything in his power to change it... but i think that is the real stress stretching him so thin.  since we got together in the first place we have been struggling... first it was my dui that strained us financially, then he injured his back at work... and so many more reasons since then.  needless to say, my cancer diagnosis didn't relieve any stress... financial or otherwise.

we have 2 small kids... princess is 3 1/2 yrs old... little man is 5 yrs old.  anyone with kids knows that they are still at an age that they are very reliant on mom & dad.  which is difficult on any relationship... especially one with other contributing factors to the stress level.  my mom is our usual babysitter... but she has been having health issues also.  not only is she dealing with her heart issues, she has had shingles... so, not only have we been craving normal kid free time, but just any kid free time.  i had to go to my onc, dr s, alone... which i have been doing all along, but i wasnt stage 3 all along.  my hubby was going to go with me last time since the onc surgeon, dr b, told me about the mets (metastasis)... but my mom came down with shingles instead. 

i think the lack of kid free time, crazy hours for my honey, and feeling all alone while trying to figure out how to proceed has made me a very bitter bear today... i know anger is a normal step to grieving, but why now? why not right after the diagnosis? or 3 weeks ago when i first heard about the mets? why wake up today feeling like a fire breathing dragon (wishing i just breathe on & burn up some people)? and why do so many problems have to be money related? can't we just go back to barter & trade days? or a time when values meant anything besides just wasted breathe by the person expressing them?

for whatever reason- i am way more frustrated and angry today than i am on most other mornings.  then i turn into a weepy mess... and before anyone thinks- oh she must be pms ing... i am not.  i am just a wreck.  i have been trying so hard recently to get back my usually sunny disposition... but its like this damn disease stole that too...

Sunday, October 30, 2011

Wishes...

i have so many wishes right now... a lot of them due to fears.  but instead of focusing on the negative like that... let me instead share the positives... i wish i had more understanding of medical jargon.  it seems all of these reports are filled with code i need deciphered.  thank goodness for the melanoma bulletin boards out there!!! her are two that i have found very useful, and usually comforting: http://www.melanoma.org/community/mpip-community-central   Melanoma Research Foundation
http://forum.melanomaintl.org/toastforums/toast.asp   Melanoma International Foundation

yet i still wish i knew more... i have a desire to learn more about fighting melanoma homeopathically.  but i can't afford an herbalist or DO (dr of osteopathy) which wikipedia explains: "Osteopathic medicine is considered by some in the United States to be both a profession and a social movement,[7][8] especially for its historically greater emphasis on primary care and holistic health."  so i have been researching... but without the knowledge of medical jargon i am finding myself easily confused, or distracted.
which brings me to dandelions... my daughter calls them "wish flowers."  but i found a site that shows they are so much more: http://www.naturalherbsguide.com/dandelion.html  and honestly it looks great for me for a few different reasons... but then it says "Some individuals experience stomach pain because of hyperacidity."  and then i think of being recommended a book called The pH Miracle: From Acid to Alkaline... so do i want something that will increase acidity?!? i have no idea... and can't afford to run out and buy the book (i'm not even sure if it would answer that specific question anyhow).

then, there is a supplement i found... and it sounds fantastic! but i am a skeptical person... i used to be very trusting, always optimistic... but recently was burnt one too many times... i instantly became more cynical and pessimistic... but that is kinda off topic.  i was trying to explain interferon is a drug that is often treatment for stage 3 melanoma patients... and it scares the @#$% outta me.  you could have to give yourself home injections!!! i HATE needles! i used to say "if it's not leaving birth control, jewelry, or ink then get it away from me!" so when i found this supplement NutriFeron at http://www.shaklee.com/products.php?sku=20960
i was very excited, but curious too... is this too good to be true? is there validity to their claims?

what about the different teas out there? i would love to try sir jason winters tea, or read his book... again, money is the issue... but you can read about him here: http://www.sirjasonwinters.com/story.htm - i think the original & green tea flavors sound great... but pricey.  i was also told a little about essaic tea http://www.essiacinfo.org/ again hindered by money, and medicinal knowledge... i don't want to risk interactions... or decide to go with one treatment a pro would know i never should have tried...

my hubby asked me for a wish list for christmas... i laughed because its bascially just knowledge, supplements, teas, and UPF clothing.  those are the things i want for now... i am working towards a campaign for melanoma awareness already... so that wasn't something i could ask him for.  if any of you readers who happen upon my blog know anything about these things please comment... that knowledge will make some of my wishes come true...

Friday, October 28, 2011

Panic...

i am so proud of myself... i found a comic that ties together 3 of my posts...  "Procrastinistic...", "Calvin...", and, of course, this one -"Panic..."  and if you have read any of those posts you get the idea this comic sums me up decently.  yet, panic isn't only inspiration... it can be paralyzing fear.  in "Heliophobe..." and probably a few other posts i discuss my fear of the sun... especially during peak hours... well, i have about 3 hours to figure out how to seem normal to a bunch of kindergarteners while working the outside playdough craft area for their fall festival today.

i am thinking i will be going incognito... sunscreen a must... hat, sunglasses, long sleeves to cover up... but i do that every day i go out.  but i still avoid being outside during peak sun... then something like this comes along... and the festival is from 12:30pm - 2pm.  all the parents already know my story, i kinda had to share one day because i had become a weeping mess while attempting to drop little man off for school... but the kids are all between the ages of 4 yrs & 6 yrs old.  the only thing they will understand is how uncomfortable i appear being outside...

then there is the panic i feel about my overall health... i think i can handle anything... except the not knowing.  dr s has ordered the tests to be able to answer my questions... now the insurance needs to approve them.  i am hoping once they are scheduled i will feel some relief... then even more relief when the results are discussed with dr s.  but for now that leaves me with the panic of the unknown... not good for a woman with an overactive imagination like myself.

*update* more panic ensued that day... but my panic about being outside turned out to be unnecessary... when i arrived to little man's classroom they had decided to keep the playdough station indoors, and the popcorn station outside because it was messier.  so i let myself get worked up for nothing for 3 hrs... instead i discovered my breast had swelled in size since surgery... apparently normal after yanking lymph nodes from the underarm... even for guys, according to a fellow warrior.  i just hadn't noticed (because i hadnt worn a bra because of healing since surgery), so noticing 3 wks later really freaked me out.

on a positive note... i may not have been ready to talk with those girls yet, but i have been sharing my story with parents from my son's class... a lot of the parents take their kids to the park around the corner from the school right after class... and i think initially the moms started talking to me because they thought i was a little odd to be hiding in a corner of the playground... but that is the spot that is shaded by a large tree, i even sit there on cloudy days.  at any rate, i have shared my story with these women... many of them keep me in their prayers (which is comforting even if i can't exactly define my own beliefs), but one made an appointment and saw her dermatologist.  fortunately, her biopsy came back as "one of them i would need to worry about, but before i need to worry."  i asked if she wanted to bring her pathology report and i could see if i could decipher some, but i assumed that probably means it was an atypical nevus only mild to moderate.  we will see what happens.  either way it felt like a victory in the awareness department.  and it seemed to coincide with a fellow melanoma awareness blogggers victory.  so if we all keep spreading the message it will get out there...

Wednesday, October 26, 2011

Lame...

that is how i am feeling... it is wednesday and i was supposed to talk with the girl talk group tomorrow.  i was all ready to do this... then i found out my cancer is more advanced than thought.  at first, i was all the more ready... then my onc, dr s, ordered more tests (pet scan & brain mri).  i have mentioned before i hate waiting... which is really kinda ironic considering i am "Procrastinistic..."  but i feel like i am being obsessive.  i just want to know where i stand.  i think alot of you will agree that the unknown is the hardest part.  once we have some answers we can come up with a game plan.

for now i feel like a hypochondriac... seriously every ache and pain scares the *bleep* out of me... dr b, my onc surgeon, says the pains i have been experiencing in my arms since surgery are nerve pain... and he could not say when it might dissipate... more uncertainty... by now, you would think i would be used to this but i am not.  i have always known drs "practice" medicine because it is not an exact science.  unfortunately that doesn't make it suck any less.  

i spoiled my kids... as i think everyone with kids should... they have always known how much their mama loves them... even when i get pissed off and yell at them i accompany that with an i love you... so it is my own fault that my kids turned our bed into a family bed.  never really bothered me before may... sure it was slightly inconvienent when my hubby and i wanted "adult time" but we are creative and always seemed to find a way around that issue.  but the surgeries is another story... my kids want to snuggle as usual and i can't... otherwise i wake up like i did this morning... sore, achey, tired, and cranky... feeling very lame.  if my body were not betraying me i would be able to snuggle my munchkins...

more uncertainty... i am hoping once the tests are scheduled i will feel a little more normal... or as close to normal as i ever get... then i can reschedule talking with those girls about the dangers of melanoma... i really think that will be helpful to my sanity.  just not while i feel like i am being driven insane by uncertainty.  i don't want them to dismiss my message because i am a wreck while i deliver it...  lets hope tests are scheduled soon, the girls get the message about being sun safe, and i stop feeling lame- both, physically and emotionally...

Saturday, October 22, 2011

Calvin...

when i was in jr high this specific strip, and one other about calvin having lost his marbles, earned me the nickname calvin.  well, maybe that and the description of calvin as imaginative, bratty & precocious earned the nickname.  my family loves me.  and unfortunately it is accurate... i am not the quickest.  and i definetly have a bratty streak... i am working on that tho. and i've already told you a little about denial in previous posts, so i am not lacking in imagination either...

so i found it ironic that i felt my hubby had a calvin moment... and the funniest part (to me), was it wasn't even a true calvin moment... i think he was just hopeful, not knowing for certain... when i told him dr s, my onc, was ordering a PET scan, and brain MRI because she wanted to be able to stage me before deciding on treatment... he asked so hopefully "so you may not be stage 3?" and when i replied no you could hear excitement in his tone... until i clarified the only stage i would be otherwise is 4... even tho this isn't really funny at all it makes me laugh.  i think its because i am the type of person that prefers to laugh than cry... so sometimes that translates to finding humor in some of the seemingly most inappropriate ways...

i am hoping to raise awareness for melanoma by talking to a group of girls at my alma mater high school this thursday.  but i think the same qualities that earned me this nickname are the ones making me nervous as hell about public speaking.  i was always kind of an odd duck... i am ok with that.  but even as judgemental as i was, i hate being judged myself...  i am hoping these girls listen to what i have to say... not assume anything as soon as they see me.  but i know i will be talking with high school girls... i am just trying to save them from ever feeling the way i did when i heard the term malignant melanoma in relation to myself... i hope they see that from presentation, and that is what they remember...  along with the basics about sun safety and knowing your skin...

Wednesday, October 19, 2011

Remember When...

i guess that is only half true... i kinda always knew i would end up a cancer patient.  it runs so rampant in my family.  i just didn't expect it to be so soon... i thought i would be old like the rest of my family was when they were diagnosed... and for the record 32 yrs old is NOT old... neither is 31 yrs old- which is how old i was when i got my diagnosis.  honestly, being in your 50's and 60's doesn't even seem so old anymore...

i keep thinking of the movie Bucket List... i always thought it would be simple to come up a list of must do's before dying... now that i am older i don't feel that way anymore... maybe if i was even older like morgan freeman or jack nicholson i might... but instead, now i all i want is to see my kids grow... my hubby walk our daughter down the aisle... and the other things too many people take for granted. 

right now i am torn on how to proceed... i know i speak with my onc dr s tomorrow... she will give her input.  but ultimately the decision is mine.  i am trying to make major dietary & exercise changes... trying to decide if i can skip harsher treatments (ie. interferon or other chemo).  i know my hubby thinks i need to do what the drs say... but i know their suggestions will be to rev up my immune system, and i can do that naturally with out poisoning myself too.  but this is a HUGE decision... so i will continue to obsess over it until i finally decide.

i always thought only the good die young... and i never thought of myself as that good... and i know this is not a certain death sentence.  in fact, i know i want to fight! i am just not sure on how... so in the meantime i hope to speak with the girl talk group and start fighting by educating others... they meet on thursdays, so this week is out... but maybe next will work.  i also contacted Melanoma Research Foundation for help with informational brochures... they are sending me a package.  so i will focus on that for now... no need to stress trying to make a decision without all the info.

Saturday, October 15, 2011

News...

they say that no news is usually good news... the theory behind that being that if it was bad news the person involved would need support... so if it slips their mind then it must not be bad, right? *i am making that loud incorrect buzzer sound now* i went in for my follow up appt yesterday with the onc surgeon dr b...

on the 5th i underwent surgery to resect the initial tumor area as well as snlb.  To perform a sentinel lymph node biopsy, the physician performs a lymphoscintigraphy, wherein a low-activity radioactive substance is injected near the tumor. (thanks again wikipedia).  that dye settles into the sentinel lymphs so the surgeon knows which lymphs to remove & biopsy.  the dye settled in nodes under both my underarms.  dr b said he took 3 from one side, and 4 from the other side... but was unclear on which side was which number.  he said they found micro mets (small metastasis) on the left side.  i am to speak with my onc (dr s) about this next week then return to dr b the following day.

at first dr b was saying it is micro mets so we can wait & see what happens... until i started asking questions about increased risk of breast cancer.  that is when he heard my family history of the disease.  so he started saying to talk with my onc... ask her about genetic testing to see if i carry the gene.  i don't think my insurance will cover that.  but he also wants me to ask dr s if we should perform a complete axillary dissection (remove all nodes left side) for testing to see if there is any more melanoma... or systemic treatment such as interferon or other chemo... he even went as far as to talk about a profalactic mastectomy if i have the gene because of the family history and the melanoma mets.

as my hubby likes to say... that confused me as much as a baby in a titty bar.  how can you go from a wait & see approach to the drastic profalactic mastectomy? does my family history really say that much? or like my brother pointed out- my family worked in an industry that increased their odds of cancer... since most were women it seemed logical it was breast cancer.  i don't know, but will be asking dr s. 

when i broke the news to froggie she reminded me there are tons of great trials out there.  i will be looking into everything this weekend... i meet with dr s on thursday, so i have time to research.  i just wish i had been clear headed enough to get my path report... but i wasn't.  i will ask for that on monday.  in the meantime i will use the details i do know to see what i might qualify for.  besides, since i had already had surgery in that area it is possible the lymph channels (kinda like roadways or paths) were changed... that means that the micro mets that was found might not even be the area the initial channel went to.  i know, i know... i am gonna drive myself crazy... but finally some good news- i am already there...

i am sure i will be writing more soon... but for now i dont know what else to say... i think mets, no matter the size, means i just advanced past stage 2 direct to stage 3...

Friday, October 14, 2011

Crazy Mess...

yesterday i was able to catch up with an old friend... i will call her froggie... she was once of my closest friends imaginable.  but i wasn't too bright, i made some dumb decisions in the past... one of the biggest being letting our friendship slip... to make a long story short i was with a guy that was very BAD for me... and doing lots of experimental behaviour at the time.  i let him basically force me into choosing between her & him... since i was young & dumb i felt stuck... i lived with him and didnt feel i had anywhere else to go so i basically screwed froggie royally.  we lost touch... but we still have common friends, and i will always love her. 

i heard from the grapevine (auntie d aka tiger lady) that froggie lost her dad.  of course i immediately told her to pass along my condolences, and asked what he died from... to my surprise it was melanoma.  i HATE this disease!!! but my silver lining is that i spoke with froggie again... we talked for about an hour... about everything... but mostly this awful disease and my ideas for raising awareness... she is willing to let me share her dad's story.  she loves what i am trying to do...

when froggie called in response to a text i sent saying it was me & please call when you can i could tell she had no idea what to expect... and it was the same strained converstaions we had had since i chose my ex the @$$hole... until i filled her in on why i was calling, and what had been going on for me... when she asked how i was i replied a crazy mess... but i wouldn't be me if i wasn't... she agreed it is all part of my charm.  and understood the mess when i shared my diagnosis of melanoma was in may...  i am waiting for an email with the details of her dad's story... but the pieces i do know are typical of this awful disease... tumor removed, no further action needed... a few short months later he was hospitalized and never released...  more reasons this awful disease needs more awareness - even drs don't fully know what it is capable of.

speaking of drs, this crazy mess has my follow up appt today.  i find out what "icky" meant in terms of my nodes... i also hope to have the staples & stiches removed... bc yesterday i don't think i rinsed the area well enough after shampooing & conditioning my hair... so it started to get pink and inflammed.  i will post when i know more... for now i need to get ready for my appt.

Tuesday, October 11, 2011

Girl Talk...

hehehe... if you know me, then you know why i am giggling.  if not, then let me explain... i am female, but NEVER been much of a girly girl.  in fact, i would say i am the polar opposite.  i feel at home in a hardware store (worked at 2 of them for a combo of 4yrs), or a shop (i just finished school for motorcycle mechanics).  since my diagnosis i have wanted to do something to educate people about melanoma and sun habits... i have ideas for a t-shirt line i will someday introduce... but in the meantime, i decided that reaching out to high school kids is a good way to start.

i contacted my old high school to figure out where to begin.  i spoke with the school nurse because i thought she might be the most understanding.  i was right... she suggested the school has a club called girl talk that i might start by addressing.  i immediately emailed the contact she gave me for the teacher who mentors these girls.  i recieved an email back, and she was very interested.  my information will be passed along to the student president of the club to arrange the specifics.  so exciting...

since i am not usually a public speaker i asked for any ideas or suggestions from a melanoma warriors group i am a part of... the response was amazing! i just wish i could get the whole group together for this... imagine 115 people directly affected, with their scars... sharing their experiences, their stories... with that many people you can just about guarantee a portion of people listening would connect to someone's experience... i think that is what i am a little nervous about... what if the girls don't connect with my story? i know its normal to connect with something familiar... since i am not a girly girl i am hoping these girls connect to my story as a person who grew up in san diego...

the recent tanning bed ban for minors in CA really got me thinking... it is a great start!  but i saw some people were talking about it being useless... that really confused me.  how could such an important step be useless? so i researched... one of my melanoma information sites answered my questions (one of these days i will figure out how to connect you all to said sites, for now i am technologically challegend).  there was a person joyously boasting about the new bill... and one person saying she hopes it works because its hard to enforce... in her state the health dept didn't care, and the police don't think they should be enforcing it either... that is when i decided to reach out to the kids themselves... if we can get a campaign going like wildfire through high schools educating these kids that might make a difference.  anyone interested in helping in any way would be greatly appreciated!!! 

"you may say i'm a dreamer, but i'm not the only one, i hope someday you'll join us, and the world will be as one..." -john lennon

Saturday, October 8, 2011

Waiting...

my procedures were done on wednesday... i am very sore... i won't know anything until friday the 14th when i go in for follow up.  when the nurse was hooking up my iv she missed the first vein... i tried to tell her that meant no more... and my hubby said something about taking pain for me if he could... so i tried to talk the nurse into poking him from then on and leaving me alone... i told her he is my soulmate, that has to count for something... she didn't agree.  but she did like my sense of humor.  i even tried to let my hubby hitch a ride on my gurney with me... again they said no... but laughed.

when they injected me with dye to see where my sentinel nodes where they light up under both arms... so they sampled from each side.  i am still hoping this is all precautionary.  and they took about a centimeter more from the initial scar around all sides.  i was prepared for them to take from my left underarm since the initial site was my back/left shoulder blade... wasn't prepared for them to take from my right underarm... but am glad the procedures are over now.  so i wait... until friday the 14th to find out if there was anything there.  the dr said both lymphs were icky, but we wont know until later what that means.  such a technical term tho... icky... i can only hope it means i am fighting off a cold and not more cancer.

i am way too sore to type anymore.  sorry if this makes little sense, they gave me vicodin... and since i got sober in '05 i turned into a lightweight... i think i am going to take another nap.  i will let you know as soon as i know anything.

Thursday, October 6, 2011

Surgery...

i had my procedures yesterday... i will post in full detail later.... for now i am sore, sore, sore...

Tuesday, October 4, 2011

Tomorrow...

in 2 and 1/2 hrs i won't be able to have anything more to eat or drink... because tomorrow is surgery.  i will be there for 8am... hopefully out by 5pm.  auntie d has princess for the morning shift.  my hubby and i are taking little man to school... but it's supposed to be ride your bike to school day... little man is bummed he wont be able to bring his bike.  but it is also dads take your kids to school day, so he is happy dad will be taking him.  i am still a little nervous about the procedures, but glad to finally be getting it over with... as long as the power stays on.

Sunday, October 2, 2011

"Procrastinistic..."

my hubby says i procrastinate on procrastinating... so he made up a new word for me... procrastinistic.  he loves me so much... and he knows i have great intentions.  just not always the best follow through... yet he loves me anyhow.  so i've been working on it.  most people make new years resolutions... i feel like i've been making new cancer resolutions...

one of my previous posts i mentioned i wanted to organize my house before surgery... i'm not sure which one, because i honestly have no memory (but knowing me, it was probably awhile ago)... and i just started yesterday.  so far i have an immaculate kitchen (or it was before my hubby got in there to cook, but he is such an amazing cook so even when he is messy it is well worth it- homemade chicken & dumplings)... 3 bags to donate from my bedroom... and a clean organized kids' room... the living room is mostly clean, i just need to organize my paperwork clutter... the bathroom isn't bad because that's the one room i stay on top of... basically i saved the worst for last, our bedroom... but sunday's productivity has almost been depleted... that leaves me monday and tuesday to finish up.  i am hoping to be done monday night, but we will see... i always have the best intentions...

a different post (again, i don't remember which one) i said i was trying to be less judgmental... this one i didn't procrastinate on.  but it is still a daily battle... for instance, at my son's back to school picnic (Picnic...) i was challenged... there was a mom that was dressed like it was a singles picnic, not a kids' picnic... not only that, but she liked to play damsel in distress... and if you knew me then you would know neither of those are my style... don't get me wrong, i used to dress that too when i was going to the bar... but i have never been the damsel in distress type- i've always been a do it yourself type of chick...  i caught myself letting my irritation with her consume me.  honestly, that is probably what distracted me from my normal heliophobe paranoia (being outside during peak sun hours)...  so, as you can see, i am still a work in progresss on not being so judgemental...

i am also trying not to procrastinate so much... but you can probably guess by the title of this post that hasn't been exactly the case.  in my own defense, i am getting better about it... before i probably would have procrastinated my organization goal until after surgery (even tho the goal part is before surgery)...  and i am realizing how much simpler it is to keep up when i dont put things off... so there is hope! (i will SOON include a post about how horrible procrastination is when it comes to checking your skin)

pessimistic is the other half of my hubby's made up adjective... which is truly ironic... when we first met he was the pessimist... and he loved my optimism.  well, times have changed... we seemed to have slowly switched roles... and it happened so gradually that we didn't notice until recently.  he and i are both geminis, split personalities to a degree...  and it seems as if we switched personalities in perfect balance.  even with all of that, i want my optimism back!!! i don't like feeling like eeyore... charlie brown... or any other sad sack that comes to mind... i don't know how to get there tho.  i continue trying, and i would like to think that is the important part...

my hope is after these procures wednesday i will continue to keep working on these changes... because i can see it is helping... feels like program de ja vu... "fake it 'til you make it"... and it's not so much faking it, as slow progression.  but like i said before patience isn't my strong point either... maybe that will work into my hubby's next new word.  (i crack me up ;) )

Wednesday, September 28, 2011

Today...

what a day! so much going on right now... one week from my surgery... my hubby's oldest turns 18yrs old today... and i am trying to call around for donations for my son's school program run san diego... i am stuck on an idea i have for shirts to raise melanoma awareness (just clueless on how to turn these ideas into reality)...

first off, one week from today i will be at the hospital undergoing these next procedures... a resection (wle), and a snlb.  i am scared to death... but trying not to be.  reminding myself this is to verify i am ned, and hopefully stay that way... then i have my mind that won't shut up... it keeps thinking things like: "maybe it's not just precautionary... maybe they really do see satellite... what if there is something and they choose to only moniter it?" and there is plenty more, but you get the idea.  i am trying to be optimistic, but my brain didn't seem to get the memo...

then my little man loves the run san diego program... basically, the kids run laps before school so when the bell rings they have expelled some energy and it is easier for them to focus in class... after 3 laps they earn a mile... and they selected different locations in san diego the kids can pretend they ran to (according to the miles they acquire).  that brings us to the part i am trying to coordinate... they are asking for donations from these locations as incentive for the kids... so i am calling around finding out who to forward these letters to... i am pleased to say most places are very interested in supporting the program.  but i am disappointed some places i have called were very rude asking me how their location could donate anything when they are already in financial hardship... i get this is tough times everywhere... but my thought is a brochure they already have tons of might generate business to help their establishments.  call me crazy...

plus i have ideas to promote melanoma awareness and no idea how to actualize them.  i am still waiting for a return call from a foundation i have left several messages for... i even considered making a deal with the devil (my hubby's boss) to actualize them... but i am holding off on that for now.  i am hoping for a miracle... somehow, someway to make these ideas happen... but i am getting really frustrated in the meantime.  so if any readers out there have any suggestions i would really appreciate them... or if anyone wants to financially back a melanoma awareness campaign let me know... lmao.  -can't blame a girl for trying ;)

all in all, it has been a good day so far... just alot on my mind.  as you can see by my involvement in little man's school, i like to help... i have always been this way.  it makes me happy to help... any way i can... i just need to keep reminding myself that not everyone is like-minded.  i will get it someday, until then i continue doing what i can...

Monday, September 26, 2011

Picnic...

sunday was a back to school picnic at little man's school.  it was held from 1pm - 3pm on the pe field.  and i went! of course i was sunscreened with a cover shirt, but i was outside during peak sun hours.  it was alot of fun, and all the money made goes to making the school better. there was supposed to be a kickball game, but the kids got distracted by the hula hoops they brought out instead.  i can't say enough how much i love his school...

they have a garden on the main campus for most of the school, and kindergarten has their own kinder garden on their part of campus.  they teach the kids to reduce, reuse, and recycle.  then they even have them compost lunch scraps... and my hubby is helping to get a worm bin created for the kinder garden.  its great how involved he has been, feels like he is picking up the slack where i can't.  and he keeps reassuring me that after this next surgery is complete and i have recovered i can volunteer... apparently alot of parents start off wanting to help, but few continue year round.  so that is a huge plus for me... i want to be very involved in my kids' education. at one point i had wanted to homeschool them... but as they got older i realized they already knew i was a soft touch... i didn't want them to exploit that and have their education suffer.  besides, my patience with children was alot higher before i had any...

little man is excited to learn there... it is so great to watch him be so excited for school.  i just hope he is always so excited... there is always more to learn in life.  i know recently i have been trying to learn how to get past the heliophobe stage since my diagnosis... i think what i am discovering is everyone is right by saying it just takes time... i remember thinking i knew that was probably true, but could you be more general? even though i am not completely over this stage yet i can see light at the end of the tunnel.  last weekend i even helped my hubby out working at the bay, again vigilant about sunscreen (for me, the kids, and a couple customers)... so that's 2 sundays in a row that i was outside most of the day... so much better than only leaving for needs (ie. dr, store, appt).

not everyday is a picnic... and i've been pretty depressed recently.  i've known all along that i shouldn't let my paranoia get to me, but it was... i finally feel like i am really being optimistic, not just faking it til i make it.  i have this one last surgery to tell me i am cancer free, then new and improved life to look forward to.  i've always enjoyed helping others, and doing what i can to give back... i feel like i am returning to normal just in time to feel like myself before a serious effort to do my part to raise melanoma awareness.  and maybe that is what is motivating me to feel normal again... i don't really know.  but either way i am really enjoying it...

Wednesday, September 21, 2011

Battle...

there are lots of things to battle... for me, today it was my princess... we had a 55 min. battle of the wills.  that girl has some lungs... oh my.  she was super tired and apparently felt it necessary to battle until she fell asleep.  i called my mom for a little guidance... when i asked "when did i stop tantrumming & fit throwing?" to which my mom replied "you tell me, have you stopped that yet?" ... gotta love family...

after her humor, mom told me to try comforting princess... not giving in, but allowing her to be upset... and trying to calm her down.  i think that lasted another 20 something minutes... princess just kept on fitting & throwing her tantrum... i summoned all the patience i could muster... and i won!!! it may have taken almost an hour, but i did it!

i also had to battle my own inner demons today... i made a choice i have to live with... doesn't mean i have to enjoy it every minute of it... but i can't let it bother me like i almost did this morning... my little man's school needed volunteers.  i didn't complete the application in time because i can't make a consistent commitment right now.  i have surgery in 2 weeks... and i'm not sure how long it will take to recover.  since my hubby has wednesday off, he volunteered for helping compost & recycle during lunch.  i think this is awesome! but part of me was SUPER jealous... i really want to volunteer, but with the young kids they need consistence... right now that isn't an option.  at first, i was really upset with my hubby... the one time he could actually watch princess so i could help at little man's school he already signed up for.  then i realized it's not his fault... i made the choice not to complete the application in time... i know i can't commit like they want right now.  all i can do is make it through his first year, get my treatment squared away, and hope to be able to do more in the future...

i feel i am truly blessed that my biggest battle today was with my 3yr old... if only that was a daily truth...

Monday, September 19, 2011

Plans...

john lennon said "life is what happens while we're busy making other plans" in the song "beautiful boy" that he wrote for his son sean.  i couldn't agree more... i always have intentions of sticking to a plan, it just seems to never work out that way...

for instance, i had a surprise derm visit today... i wasn't due back there until late next month.  but i know i have mentioned in my previous posts (i think it was scars... & anxiety...) that two of my biopsies from july healed fine at first, then about a week later started getting very DARK... i finally decided to figure out which dr to talk to about them.  i hadn't done that yet because i was pretty sure i was going to end up back at the derm's office.  i was right... the pa (physician's asst) told me it was good i went in because normally they would perform a wle if a biopsy site came back DARK like this, but since the biopsies came back as 2 compound nevus and 1 intradermal nevus we didn't need to.  i knew i didn't want to end up at the derm's office, but at least i now have the pathology report from july.  when i called this morning i was fit right in.  i had been expecting them to say they would see me next month... so when they rushed me in i felt panicky...

my son was at school, but the princess was home with me... i had 45 mins to get 1/2 hour away and no babysitter.  i called my hubby to put him on notice he might have her at work... then my folks to see if they could watch her.  it worked out better than that... my dad came and drove me & princess went to their house with nana.  that way my hubby can work without being on dad duty.  i didn't have to drive. and princess had fun.  so even if they got me feeling panicky in the begining, i am glad it's over... trying to focus on the positives... i won't have to go back to the derm's office for another 3 months and he didn't slice on me today.

the surgery is planned for oct. 5th.  i seem to be much calmer now about it being rescheduled... but that was not a good day.  it was just my luck tho.  seriously, a power outage that affected southern california, part of arizona, and some of baja (mexico) the day before/of my surgery.  then auntie d (aka back-up babysitter) has jury the day after my surgery (the new date) so she is unable to switch days off (like she can every other week).  as you can see i don't have the best of luck.  but i am working on changing that..

just hoping my october plans actually work out... i want surgery to just be over with.  and i want to know it was just precautionary.  just to show i am ned (no evidence of disease).  so even if i haven't had the best of luck i am hoping to change that... actually see this plan through.  i don't want anymore surprises...

Friday, September 16, 2011

School Song...

today was friday morning assembly at little man's school... they sang the school song.  i was glad to be there.
even if it was really off key and quiet.  i figure as the year goes on i will enjoy the assemblies and the school song more... as more of the kids remember (or learn) the words. 

i even ran laps with little man for run club.  a bunch of the other parents were looking at me like i was a crazy lady... and i thought i wouldn't get those looks until they got to know me... but it was a lot of fun.  i am learning to get past my insecurities for my kids.  i haven't been going out alot since my diagnosis... at least not during the hours of 10am - 2pm, unless i have an appointment.  both because of my recent heliophobia and because the sunscreen clogs my pores and makes me breakout like a tween during puberty... i have never really felt like a vain person... i have always been all natural... never wore make-up, never dyed my hair... never saw a need.  i guess i was just lucky as teen, never really broke out... but, now at 32yrs old, i find myself kinda wishing i knew how to apply cover-up... not really; just something, or anything to not be so self conscience...

a lot of the parents look at me, breaking out, and give truly snide looks... or let their child play with mine at the park until they realize i am my childrens' parent.  i know i used to be very judgemental, so its even harder... i know where my judgement came from, my experience... but this damn diagnosis has changed my experience.  i've developed social anxieties when i used to be a social butterfly... i have a difficult time chit chatting casually anymore. 

most of the melanoma sites i've joined or follow say the same thing... time allows the paranoia to subside... but as i've mentioned before i am not great at waiting... but i continue to work on it... hoping time really does make a difference.  and trying to not let this fear control me...

Tuesday, September 13, 2011

Just Curious...

i started this blog for myself more than anything... writing helps me think things through.  but i am also hoping it might help someone else down the road... i have been getting a decent amount of readers, but not alot of feedback.  do you all think i am crazy? agree with me? understand me? what? i am way too nosey to just be satisfied knowing people are reading this... i would like to know what you think...

i am trying to reach an established foundation that promotes melanoma awareness... they have a program that helps sponsor you in raising awareness in your own community.  sounds fantastic to me... i have 2 small children, so not alot of extra money to launch my own campaign.  but i have some ideas to get younger people talking about this disease, and tanning bed bans... just no outlet for them yet.  once i actually know more info on the program i will write all about it.

my husband told me last night he didn't understand why i was blogging... he went on to explain he realizes it is helping me... but am i doing anything for others? i couldn't answer... i didn't know.  but i did tell him that others might relate if they are going through similar.  that is what sparked this post... i see my numbers (of readers) are going up... but have no idea if i caught anyone's interest... i know my hubby had no intention of upsetting me with his comment, but it did... i want to help people and actually know i am making a difference, not just have an internet diary.  any feedback or suggestions is appreciated...

Monday, September 12, 2011

Monday...

always seems to be a busy day... was the begining of little man's 2nd week of kindergarten.  he loves it! was very upset that friday was cancelled because of the power outtage... so getting him ready was relatively easy for his daddy.  (btw- his dad has taken over getting him up and ready for school since i am not a morning person... he loves me...)  and running club began today at the school.  i wasn't positive little man would like it, but i love the idea of him running out some energy every morning so he can focus more in class.  and apparently he loved it too.  i think it helps that his teacher is the main staffer for the club... and she told him he could be her running buddy.  so i am pleased my kids are developing healthy habits early...

princess is getting used to her mama time too... not as bad about missing her brother.  she just carried around pippo her stuffed hippo (almost as big as she is) around most of the day.  she is excited to help me clean and organize her room tomorrow... let's just hope she still feels that way tomorrow. 

i felt very accomplished today... i folded mt. laundry that had invaded our loveseat.  and i cleaned the kitchen.  plus, i found a promising lead for raising melanoma awareness... i am hoping to get a chance to call and inquire about it tomorrow.  then i will look up all the specifics on actually being professional about sharing the info... for now i just wanted to mention it...

surgery was also rescheduled today... it will be wednesday october 5th.  i had chosen wed because my gf has usually that or thur off from her 2nd job... meaning, on a normal week she could just rotate her work days to help watch the kids... but that week she has jury duty.  just my luck... but she is going to watch princess til 11am, then my parents watch her the rest of the day (and pic little man up from school).  so it seems to be all working out.

Sunday, September 11, 2011

Black Ribbon...

what cause do you associate with a black ribbon? chances are if you are reading this you might know it has been associated with raising melanoma awareness.  but did you know its been used to mark some major tragedies? i didn't know that until i opened my computer this morning... google has a black ribbon on its search page (which used to be my home page) to commerate 9/11.  that bothered me... it seemed like the deaths were only being remembered as simply deaths... not like the individuals lost... or the commraderie that day brought to our nation...

i am married to a die hard sports fan, especially football... so it's on in the background alot... i never thought i'd say something like this, but i think the nfl has the right idea of commerating the day with a flag ribbon...

 i think it not only captures the spirit and emotions associated with today, but focuses on something positive... just like i think the melanoma ribbon should be black, not for the people who have died because of this vicious disease, but because Melanoma (Listeni/ˌmɛləˈnmə/) is a malignant tumor of melanocytes. Melanocytes are cells that produce the dark pigment, melanin, which is responsible for the color of skin. (thanks wikipedia).

apparently the united states often choose black ribbons in remembrance of death... like the devastation mother nature produced with hurricane katrina... the death of celebs like princess di and heath ledger... i just think it is kind of morbid... in my family we always tried to celebrate life, similar to an irish wake, when we experienced loss.  i mean it is definetly understandable to be sad... but celebrate what you learned or accomplished or enjoyed from these things... not just the deaths.  i guess for heath ledger i kinda get it might have been in honor of his fantastic ability to play a psychopath... but the rest of those examples, it feels so morbid to focus simply on death... learn from everything, then treasure that... create a symbol of remembrance from beauty, strength, and hope... not just death.

i guess it was truly upsetting to me that google has such exposure... now many people will look at a black ribbon only remembering 9/11 deaths... not the way i would prefer to remember the black ribbon, in honor of the warriors battling or affected by this disease... because in thinking of them it goes to show their efforts in bringing awareness to this awful disease were not lost.  i'd rather focus on the inspiration they were for so many... the light of their lives, not the darkness of their deaths.

my mom is also a melanoma survivor... when she was first diagnosed i was in the middle of my "experimental phase"... i knew she was being affected by cancer, but i didn't really understand melanoma.  i, like alot of people, thought "it's just skin cancer."  after all it was happening to my mom and i was too busy trying to party to accept something so serious... in alot of ways i was like an ostrich with my head in the sand... it took me being diagnosed to realize "cancer is cancer."  and i think alot of people are using the black ribbon to try and drive that point home... i just don't want that message lost amongst the rest...

sorry if this offends anyone... it's not meant to... it's just my opinion.  and don't worry, i don't often focus on politics... i find it is usually too touchy a subject... but i hope you understand the spirit of what i was trying to say...

Saturday, September 10, 2011

Coffee...

i drank a pot of caramel coffee this morning... my house looks amazing... but i am exhausted.  i had a ton of nervous energy... i never heard anything from dr b's office on friday.  so i have no idea when surgery will be... i just hope to get it over with soon...

cleaning, for me, is usually done when i am either nervous or upset... i put that energy to good use.  this morning was also fueled by my favorite yummy caramel coffee... i will probably have a spotless, organized house by the time surgery gets rescheduled.  but i need to lay off the coffee... i made myself jittery... almost as jittery as i used to be after 3 days with no food or sleep... so i know i need to chill.  coffee should not have the same effect as street drugs... and i suppose it didn't because i actually finished my projects today.  back in the day i would have just had a bunch of half completed projects.

i still think i need to come up with better ways to energize myself.  i used to be very active, then i had kids... don't get me wrong, they keep me busy, i just don't feel as active as i used to.  i haven't been hiking, or bike riding in years... the kids are still a little too young to ride bikes on the san diego streets.  i have a link to laughter yoga i am planning to check out, but not sure if it is for me.  i am looking for something to do that i feel productive for having done, as well as, increasing my activity level... any ideas?

Friday, September 9, 2011

Cancelled...

power went out all over southern california yesterday... didn't come back on til somewhere around 3:30 am... so it was out for roughly 12 hrs.  normally that wouldn't bother me a bit... it was a long time ago, but i am from CT where weather causes power outages frequently... but today was supposed to be my surgery.  it was cancelled.  that bothers the f*** outta me... i can't say i was ready for it, but i was as ready as i will probably ever be.  keep in mind that a few weeks ago i went for this second opinion thinking i was just going to blow this off.  then he said he saw "satellite" growth... and they were going to rush me in for surgery before my son started school (which happened tuesday of this week)... they tried to schedule for the day of his kindergarten orientation, i didn't let them... i've been double guessing myself for that decision since... saving questions to ask, waiting for today... now it's just more uncertainty...

more waiting... i'm not so good with waiting... trying to be... not very succesful at it tho.  my positive lining for this is that school was cancelled... so no morning assembly to learn the school song missed!!! for today, anyway... but little man does have a rash, no good... it could be just the heat with no power combined with the chlorine from the few minutes we sat with our feet in the pool (of our apt complex) when he would not stop splashing... just checked on him soaking in tub and it seems to be going away... good news! probably was just the heat...

surgery being cancelled sucks major @$$ tho. i was ready just to get this over with.  i have been so anxious since this all started in MAY... finally started to get distracted by life... was not expecting second opinion was going to happen with my insurance... definetely wasn't expecting to hear anything about satellite growth... and who expects a 12 hr power outtage that blankets southern california? seriously... i will have the pre-surgery anxiety until i get a new surgery date scheduled... or until it's done.  i hope it's only until it's scheduled.  time will tell...

and my questions... 1) mole was biopsied, pa said complex nevi not atypical... now it's very DARK... after it had healed pale... 2) satellite- can only be confirmed via pathology, right? might not even be more melanoma... 3) when can i start taking vitamins? my nails are getting ridges in them... they haven't done that since i got sober, think i am lacking serious nutrients for this to be happening.... and i know i have more questions i can't remember right now... i know, i should have a medical notebook for these questions, but i don't yet...

i got into a fight with almost everyone this morning... i am NOT a morning person... and i have been dealing with some major anxiety over all this, especially surgery... i was lashing out... oops.  but, at the same time, i think that should have been understood... everyone around me knows of my recent anxieties... it's hard to miss... and they also know i am NOT a morning person... so it goes with the pattern to guess the morning of surgery i might be in rare form... i am scared to death... not thinking straight... don't know if the others involved will realize that... i can hope...

back to the waiting... i will write again when i know more... or if i need to vent again... (coming soon: rant about my son have slight sunburn... then rash...???)

Blackout...

today is my surgery date... i hope... but all of southern california was without power yesterday... it went off around 3:30 pm... and was supposedly restored around 3:30 am... they cancelled all the schools and colleges.  so there is a positive... i wont miss assembly at little man's school.  and i should be there when they learn the school song. 

without power in the whole county i am only assuming my surgery is really happening.  but they haven't called to say otherwise... was kinda cool that my last post i asked yall to keep fingers crossed i could do both assembly and surgery... power outtage wasn't exactly what i had in mind, but ok...

since the power is back on i need to go get ready to get to hospital... will try to post soon to let you know how it went...

Thursday, September 8, 2011

Fingers Crossed...

tomorrow is my surgery date... so i am not sure when my next entry in here will be.  i was hoping to have written a few more entries by now, but oh well.  with my little man starting school this week we have been very busy.  i am not a morning person, so my hubby has been helping get little man ready for class.  they are both enjoying their time to bond.  i am feeling a little left out, but so grateful... i went on the first day to get pics... but since then daddy has taken him. 

on fridays at little man's school they do a morning assembly... this week they invited the parents to learn the school song.  i called the office of the school to ask how long the assembly would last... they can't really say because it depends on how quick the kids cooperate and learn the song.  they told me that it would definetly be over by 8:30am... i thought that was fantastic because the hospital wants me there for 9am and its about 1/2 hr away.  until yesterday... i got a hold of the pre-op nurse to get my questions answered.

they had me go in yesterday for pre-op bloodwork.  and told me that 9am is supposed to be the time of dye injection, they want me there for 8:30 am.  grrr... i don't wanna do this anymore... but its not something i can just forget about.  i have to do this.  i also found out that dr b is prepared to take sentinel nodes from left underarm or neck if needed.  i guess i knew that already... but somehow i was only prepared for underarm surgery.  so the thought of looking more like frankenstein with scars visible on my neck, and missing the school song sent me into tears again... my amazing hubby just grabbed me and held me tight.  he let me cry, all the while telling me he understood and it was gonna be ok... fast forward a little bit and thats when he decided we will be able to go to morning assembly, might be late to the hospital... but thats what they get for not giving us the right time in the first place...

it's not like i am not going all together.  i am just not gypping my son either.... or myself for that matter.  if all the stars line up then i could do both without being late, but wont know about that until tomorrow.  wish me luck it all works out for the greatest possible good... and that they dont actually find anything more, its just precautionary...

Tuesday, September 6, 2011

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...

Friday, September 2, 2011

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...