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 ;) )