Tuesday, July 8, 2014

A Day Off...

i just finished my first week of work in about 9yrs... it went well... but i am having a really hard time keeping my mouth shut about melanoma... customers and coworkers need to be warned to check their skin... but i am afraid to expose myself as a survivor... if i do, they could use any excuse to let me go before i pass the probation period... and i was originally hoping to keep quiet until i make full time, but doubt i will make that goal... it is just too difficult to not say something when you see a mole that needs to be looked at... since may 2011 i have been very vocal about sharing my experience in hopes of saving others from experiencing something similar... but with the new job i am trying to keep it to myself... very difficult... in a little over a week i go back to the new derm to get 3 biospies... still only worried about the one on my foot... can handle the 2 on my back... but not looking forward to a foot biopsy then work at 7:30 the next morning... also, my appt is wednesday and i know i work thursday - sunday... won't know when the next day off after biopsy is until this week is over and the new schedule goes up... also, i need to find a new oncologist... i thought i found one... but then my derm told me there is one that works with them that he highly recommends... hubby thinks i need to see that guy... i am torn... i can see the benefits that having 2 of my drs in same building- they might actually better communicate about how best to help me... but, i am huge on instincts also- not that the guy derm recommends give me heeby jeebies or anything... but the oncologist i initially chose gave me a warm fuzzy feel when i was researching her... so should i continue with my gut, and original pick from before i had an ally in tx? or do i go with the dr that my other dr recommends? i have no idea- any feedback is welcome... in the meantime, i procrastinate until i return to derm for biopsies... i am hoping it makes it an easier choice when i know the derm better...

Friday, June 27, 2014

Work...

we are all settled in to TX... trying to make the best of it... it is definitely not southern california... i found a new primary dr here... not so sure i like her, but for now she gave me the referrals i needed... and the derm's office got me in quickly... was the first time in a long time i did not get cut visiting the derm... i was super excited... until he stated it was bc he needed insurance approval first... so i am scheduled to return july 16th for 3 biopsies... normally this would not bother me, i am way too used to being cut on... but i just got my first job in 9 yrs, i start on the 2nd... i figure if i can handle 2 kids with all the previous cuts i should be good... but one of my moles is on my foot between the big toe and the one next to it... so as i am getting used to being on my feet all day again i am also going to let my foot get cut... i feel like such a baby... whining... but this is so important to me... i haven't worked in forever... and when i got my initial diagnosis and treatment it was really hard on us financially... i didn't qualify for state disability bc i hadn't worked in so long... and social security said i "handled treatment too well" to qualify... so i am trying to learn to keep my mouth shut about melanoma for awhile... i am being started as a part time employee, but hoping to work it into a full time gig with benefits... but i fear that if i mention melanoma too early they will find any excuse to not give me full time... so now i need to figure out a logical, non cancer related explanation for always being covered up in 90-100 degree days... wish me luck... oh yeah, and for the dr appts that have started again...

Friday, May 9, 2014

tanning police...

the laws are rapidly changing across the US... states are determining that tanning beds CAN be deadly... one of the statistics i see a lot is that indoor tanning before age 35 increases your risk of melanoma by 75%... so it is a good thing that regulations are being put into place for kids' safety... i know some people think it isn't necessary... but it really is. i heard a story about a girl whose mom took her to a local tanning salon on the same saturday i was participating in the dallas AIM at Melanoma Walk... the girl was 14 yrs old, her mom signed permission to fry her child... which is actually illegal here in TX. you are not supposed to be allowed to tan until you are 18 yrs of age, like smoking cigarettes... would you buy your child smokes at 14 yrs old? wake up people- it is the same thing!!! my dad was 3 yrs old when he started smoking cigarettes... and drinking black coffee with truckers (grandparents owned a truck stop)... why? because back then cigarettes didn't come with warning labels... no one knew how bad they were for you... the warning labels came out when my dad was 5 yrs old... but he had already smoked for 2 yrs at that point... his parents still tried to make him quit, he didn't... he finally quit about 20 yrs ago... after he lost his father to lung cancer, and mother to emphysema... my point is we are educating people on the dangers of indoor tanning- or tanning period, but it is still relatively new... we need to continue educating... we also need to do whatever we can to stop the businesses that are profiting on our health... cigarettes now have so many taxes it is ridiculous... but it worked to cause many former smokers to quit. maybe we should tax tanning salons like cigarettes... then use that money to police them. i reported the salon i heard about allowing a 14 yr old to tan with parental consent... i was kinda sad to find out the only punishment will be a strong worded letter and threat of a fine if they continue. the gentleman i spoke with was very nice and understanding why i was so upset... but that does not save anyone... he did say that if upon investigation they find the salon has been serving many minors the punishment could be more severe... well, that is a start... but it leads me to believe that the only way these businesses will ever learn is if we act as the tanning police... which quite frankly sucks. i have never been the type to snitch... but under these circumstances i felt it was justified, even necessary. if i had known all of my outdoor time, spent worshiping the sun in as little clothing as possible (cut offs and tank tops), would lead to a melanoma diagnosis than i would have been more cautious... i will be 35 yrs old in less than a month... and my journey with melanoma started 3yrs ago... i would not wish anyone to have to live with the constant anxiety and fear i do... or to have to endure any treatment- whether it is the interferon i did... or one of the many other treatments currently approved or being tested...

Monday, May 5, 2014

frustration...

today is melanoma monday... lots of awareness efforts focus on today... last year there was a battle over color... someone was using an orange ribbon to promote awareness... but in the melanoma community the black ribbon represents us... i think the color war might have clouded some important efforts... with my kids i am a helicopter parent- meaning i am always hovering over them waiting for teachable moments... i used to get very upset with my hubby for not doing things the way i would do them... then my sis in law gave me some advice- allow the help, even if its not done the way you would choose to do it... that is what i think happened with the color war- instead of joining forces we split the message... does that make sense? saturday i participated in the AIM at Melanoma 5k... it was my second year... last year was just in october, but that was before we left CA... i was pleased to meet one of the women i have made friends with online... sad, i missed one of the others... i was amazed that i was able to complete the walk in less than an hour this year (not much less, but still)... in october of last year it took me almost 3 hrs to complete the 5k- i think that has a lot to do with the fact i finished treatment in february of last year... my body was still tired when october rolled around... but this year, with a possible broken toe and my kids walking, my time was more where i felt it should be... here in texas the weather is far different than this southern california girl is use to... the day of the walk was high 80's- 90's... my new melahomie saw i was wearing long sleeves under my survivor shirt and asked "girl, aren't you hot?" well, yes i was more than hot... i thought i might have been melting... but i am still scared... of everything and anything outdoors- especially between the hours of 10am-4pm... i know i was one of the most dressed people there... but i don't know when i will ever be able to be comfortable in tank tops and shorts again... i haven't exposed my legs in almost 3yrs... i was proud of myself for wearing a skirt around the house with no leggings- and that was just last week... also this week, i went without an overshirt for the first time... i know i have come a lot farther than i make it sound... but wish i could feel normal again... the first pic was my original tumor site... the second was my picc line, i had for the 1st 6 weeks of treatment- the insurance only covered it for high dose when i was at the cancer center daily... after that i just got poked and proded a lot... but after having these experiences i have a hard time holding onto hope that someday i will fell normal again...

Monday, March 24, 2014

Texas...

i finally have home internet again... let's hope that means i actually remember to write on this thing... we have relocated to TX from sunny San Diego, CA... i miss home... but, at the same time, this was a really good choice for our family... the little people seem to really like it here... they miss so cal too, but more bc of the people than anything... it is hard to stay strong for them when they cry bc they miss things, especially when sometimes i just wanna cry with them... i just keep reminding myself this is for the greater good... last year in october i participated in the AIM at Melanoma walk in escondido, CA... we really enjoyed it. this year i am in TX- the walk closest to me is on may 3rd... so again i signed us up... i'm not sure how my fundraising will go since i don't really know anyone here yet... but i didn't want to skip a year either... wish me luck... i haven't been to a dr since leaving san diego... i know, not good... but it's been nice to kinda get a break. my hubby is worried bc one of my many scars is getting some weird pigmentation... and we never got answers to what caused my breathing issues, or PET scan to light up last time... i am finding myself using that dreaded inhaler i hate more and more often... i am hoping its just bc of the weather change and allergies... bc in san diego it was almost always sunny & mild... not the case here... i am learning that in TX the temperature high doesn't mean it's during the daytime... and the lows aren't always at night... making new friends when you move is never easy... fortunately, the kids haven't been having too hard a time. even tho princess tells me "i only have 7 friends here... in CA i had hundreds!" i, on the other hand, have been having a harder time than usual... i've moved alot in my life... but that was all before melanoma... before i cared if anyone was or wasn't a sun worshipper... before, when i could look at strangers and not just see their moles... or sunburns/tans... i am just hoping the walk will introduce me to some new friends... that, unfortunately, understand... well, i just wanted to post a quick update... and plan to be doing so more often...

Sunday, December 1, 2013

all over the place...

alright... saw the specialist for bronchoscopy biopsy... got the call, it's not cancer!!! happy dance! but no answer on what it is... they are leaning toward damage done by interferon to an already weak organ... see, i was born with lung issues... had childhood asthma... then spent many years polluting my lungs... so i am to see a pulmonary specialist, get a cat scan and go from there... so we made a huge decision for our family... we are leaving beautiful southern california, my home, to restart in TX... hubby has family there... md anderson is there should i need them... life is so much cheaper there... so many reasons... but such a hard decision... but i am hoping i can find more continuity of care there... see, here its a gamble every drs appt... some are great, like dr. s... some are not, like my primary care clinic where i NEVER see the same dr twice... i have so much more to say... but no time right now... but am hoping in TX where its cheaper to be able to return to this blog completely... so for now i am taking another break... but hope to return soon after the first of the year...

Wednesday, November 13, 2013

distractions...

i know i disappeared for awhile... sorry. but i haven't had home internet in quite some time... and to be honest i felt like i had nothing new to share... same old complaining... until i got thrown a curveball last friday... my pet/ct scan showed junk on my lungs... now i need to have a bronchioscope ultrasound/biopsy within 10 days according to dr. S... i had a feeling that something showed... then when they called and asked me to come in earlier... driving there we hit traffic 2 exits from our destination... took 30 mins to get to our exit... all this time that feeling that something was wrong just kept increasing... and when the nurse took my oxygen reading, it was low, and didn't try to redo the reading... all brought me to when dr. S broke the news. alot of years i spent polluting my lungs... so i am very concerned about this procedure. actually, i am more nervous about the results of this test than anything... never thought i would hope for a respiratory infection, but here i am... and when dr. S told me to be the "squeeky wheel" with my insurance company i doubt she realized that would begin with her own staff... don't tell me to be the "squeeky wheel" on a friday before a 3 day weekend... because i will... and the office staff didn't appreciate that much. too bad. the quicker i get an answer the less distractions i need to occupy my time... my kitchen sparkles... and my bedroom has carpet, not dirty laundry all over the floor... and today i am babysitting... anything i can to attempt to distract myself from letting my mind get carried away... at this point i am waiting... for insurance approval... for scheduling, then procedure... and finally results. supposed to follow up with dr. S on friday the 22nd... will know more then... will update as soon as i am able to after that... just wanted to post while i had internet access...

Wednesday, July 18, 2012

Scattered...

i know i disappeared for awhile... sorry.  i kinda figured i have complained enough about interferon... and if i didn't have anything new to say i stayed quiet... then i had something new happen and i stayed quiet... then the melanoma community lost an amazing warrior... so here i am again.

let me start with the new thing that happened... after a shot i had a large swelled up bruise in the location of the injection... turns out it was a cellulitis... and i think wikipedia explains better than i do...
Cellulitis is a localized or diffuse inflammation of connective tissue with severe inflammation of dermal and subcutaneous layers of the skin. Cellulitis can be caused by normal skin flora or by exogenous bacteria, and often occurs where the skin has previously been broken: cracks in the skin, cuts, blisters, burns, insect bites, surgical wounds, intravenous drug injection or sites of intravenous catheter insertion. Skin on the face or lower legs is most commonly affected by this infection, though cellulitis can occur on any part of the body. The mainstay of therapy remains treatment with appropriate antibiotics, and recovery periods last from 48 hours to six months. 
i was very fortunate that i was immediately put on antibiotics and it went away-ish... i don't have that particular infection anymore... but have since noticed that now my injections cause a rash.  i am just grateful they haven't been bruising up, that was really scary. 

i am also dealing with insurance issues... and a few other stresses that made me go underground for awhile... i know writing this helps me process everything, but i lost sight of that recently.  i felt like all i was doing was being whiny... ya know they warn you interferon will affect your emotions... but i didn't realize how much until recently.  i have 2 little people, and i thought pregnancy was an emotional time... but in comparison i was a rock then. 

that brings me to the loss of another amazing warrior... as part of an online melanoma community it is hard to hear about the loss of another melanoma warrior... but some are harder to hear about than others... maybe its more similar personalities... maybe its similar family dynamics... whatever it is- some news is harder to hear than others.  unfortunately we have lost a few warriors recently... maybe it was all that added together... i don't know.  but all this loss has got me sitting here typing again... in hopes that i don't just help myself, but others...

sorry if this post is hard to follow... i feel kinda scattered recently... and i have a dermatologist appointment tomorrow... will try to post more regularly...

Thursday, March 15, 2012

yuk...

feeling gross... had my shot late yesterday... it was my little man's fieldtrip to the zoo... he had a fantastic time.  my hubby went as a chaperone... wish i could have, but my energy level would not have kept up with 3 kindergarten boys... and since my hubby gives me my shot it waited... i've already known that the later in the day i do the shot, the worse i feel the next day... but some things are worth sacrifice for our little people.

i know its been awhile since i posted... sorry... but i honestly havent felt like i have anything new to share.  i really dont want to be taking the interferon anymore... i am tired of feeling like crap...

Wednesday, February 15, 2012

Home Shots...

last friday was my first at home injection... mondays i still go to the cancer center for labs so they will continue to give me monday shots... and last wednesday i brought my hubby with me so he could learn to administer them... then friday was our first.  we experienced some technical difficulties... apparently the center forgot to tell my hubby to use the larger gauge needle to draw the shot, then switch to the smaller gauge to give the shot. 

not to mention we all overslept on friday... so my hubby had to dread giving me the injection all morning at work.  not good.  i think its bad dreading the shot period... but my hubby, like myself, hate needles... yet he is willing to do anything for me... it may have taken a little longer than should, but we got it done...

i have mentioned my past a little in previous posts... i used to party hard... gave that up in 2005.  but to some of you you might consider me off the wagon after i discuss this next issue... i am a medical marijuana patient.  i was taking zofran, and compazene for my nausea at first when my chemo started... i realized they only seemed to make my nausea worse... to the point where i was so nauseaus my back would begin to hurt, almost like back labor pains... so very painful.  then a friend of mine talked to a friend of theirs who is highly involved advocate for medical marijuana... they said to find certain strains- those were the ones in the purple and lavender families... said they are the best for chemo and helping with nausea and appetite (in my first month of high dose i lost nearly 20 lbs)... oh the difference a joint made... no more back labor pains... and i could actually eat again...

now my only issue is the medicine is doing its job... breaking down my immune system... i have had an awful cough for almost a month now... can't seem to shake it.  drs say to try using a vaporizer for my medical marijuana... i did, but then all i taste is the plastic tubes from the vape... i would eat it, but that gets pretty expensive... and since it is an election year all the medical dispensaries are currently shut down.  if they were still open i could continue to discuss compassionate care with them... basically meaning that they help patients like myself with either extreme discounts or for free.  but like i mentioned its an election year... so the federal government ignored our presidents wishes to allow states to choose for themselves... 

i am actually having more issues with the interferon... but now that i can eat again they seem so small... i still experience the chills/fevers after a shot... but fortunately thats only 3 times a week now... not everyday.  i also get very bad joint pains... mostly in my hips and legs... but i have gotten joint pains in my hips since i had little man, and they got worse after having princess... now they are just way more intense and radiate down my legs.  when i first told the cancer center they tried to prescribe me demerol... i refused it.  in my past i had issue with narcotics, and demerol is no joke of a narcotic... so i only smoke to get through the pains.  and it does help, but if anyone can think of any other more homeopathic ways to control the pain i am all for hearing them...

oh, and on the day of my first home shot my hubby noticed a bald spot.  i was sitting in front of him at the time... i immediately went to the mirror to try and see it... that didnt work because of where it is located... so i made my hubby take a pic so i could see what he was talking about... almost like i didnt believe him.  so as he took said pic he reminded me he has often seen the back of my head... but never a bald spot, until then.  i knew i was losing some hair.... but i was hoping for it to just thin some.  apparently i am not so lucky.  but for now its only one spot... but if i get too many i will go for the g.i. jane look... then get a wig... i will try being a redhead because i have always wondered what i would look like with red hair.  i never wanted to dye it because of all those chemicals.

sorry this post took so long to get to... i still want to get the word out... its just hard while doing treatment.  hopefully we get used to this home shot stuff soon... then i hope to get back to posting more often.

Friday, February 3, 2012

Week 4...

my arm hurts so this will be a short post... but i wanted to let you all know i made it through 4 weeks of high dose infusions daily... monday will be a shot instead of infusion... then wednesday and friday too... i just don't know if i will get shots at the cancer center, or do those myself... i won't find out until monday. 

Saturday, January 28, 2012

Week 3 Complete...

this was a rough week for me... after treatment on monday i ended up with an awful headache... the physian assistant for chemo said it was probably a migraine... and it lasted 3 days... but thursday it wasn't there when i woke up... and friday was a better day too.  i have to be really cautious to stay hydrated... and it is difficult... i drink about a gallon of water a day now... and i still get dehydrated.

that didn't stop me from going out today tho... it was a gorgeous day... and there was an event for little man's school.  we went for about an hour and a half... basically just long enough to have lunch so the proceeds would go to the kids' school... and for the little people to get crazy amped up... 

we also tried to take those crazy children to the store... but we ended up leaving early because i don't have the energy or the patience i used to... i even had to take a break on a random empty bottom shelf in the store... an older lady offered me assistance... i explained i was just tired.... but there was alot of concern in her face so i briefly explained "i am in chemo monday through friday... my energy just isn't what it used to be."

i have one more week of daily infusions at the cancer center... then it is on to self injections for the next 11 months... they are sub cutaneous shots so i have been told they go someplace fleshy... i have plenty of cushion so it shouldn't be too awful... it's just the idea of giving them to myself that is wicked scary...

Friday, January 20, 2012

week 2 done

i am  halfway through my first month of interferon... still no internet at home... that should be back on late next week... and i will write more then... just wanted you to know i am alright

Friday, January 13, 2012

Friday the 13th...

friday the 13th and the last day of my first week of interferon.  my iv cocktail infusion has been making me super tired.  i got home from my cancer center around 1pm then slept til almost 5pm.

to be honest i am still kinda out of it.  i just wanted everyone to know i am ok.  i will write more another time.

Wednesday, January 11, 2012

Day 3...

i just came from my third infusion... day 1 was monday the 9th... they had to do lab work first... then saline drip connected to my picc line... then 3 more little iv bags- 1 was for nausea, one was for pain, and one was benadryl... i had never knowingly had benadryl before and told my nurse... she said it will go one of two ways- it would either knock me out... or it would give me restless legs... but before she could get that last sentence out my legs were jumping all over the place... so she gave me something for that too... then the interferon after all that... so i was kinda out of it on day 1.  i ended up sleeping most of the day away.

day 2 seemed to be much better at first... my iv cocktail was only the saline, half the amount of benadryl, and the interferon.  i felt great after the infusion... i had energy and wasnt all groggy... until early afternoon i noticed my hip was hurting again... i took a tylenol, it kinda helped... but within the hour i was getting the chills.  i ended up under 3 large quilts... with a space heater aimed at me... it wasnt warming me so my hubby came home early to take care of me... once he got me warmed up i fell asleep.   when i woke back up i was dehydrated and feverish... took more tylenol and tried to eat... not the greatest idea... but i tried.

day 3 just finished my infusion about an hour ago... so far i feel fine, but i learned yesterday that doesnt mean much...  i just wanted to update everyone on how things are so far...

Friday, January 6, 2012

Just My Luck...

picc line was inserted yesterday... my hubby drove me... that is both fantastic and frustrating... he is not patient when at a drs office or similar... especially if they provide free coffee in their lobby... or if they go more than half an hour over a scheduled appointment... and yesterday was 1 1/2 hrs after my scheduled time.

after i was given a gown, changed, then brought to procedure room... my hubby calmed as i was changing... thank goodness he did or i might have ended up running away after you hear what happened next... the nurse called 911 to rush the person who was ahead of me to the hospital.  fortunately my hubby was in good spirits at this point and started cracking jokes to keep me mellow.

there was some question over why a picc line and not a port for treatment... i am hoping to have a better idea monday.  but i believe picc line was prefered because the first month of interferon is daily infusions.  i do know they placed the picc line in my dominant arm... the non dominant arm has a severely atypical mole that will be getting cut out.  i am hoping my arm will feel normal again once this thing heals...

Tuesday, January 3, 2012

MIA...

sorry i have been MIA... i wasnt trying to be... but first my comp had 123 viruses... and then we let the internet bill lapse to make a better christmas for the little people.  not sure when i will be back online since the bill is part of a bundle... but i will be back.  i go in thursday to have a PIC line inserted... then start interferon on the 9th.  i am not looking forward to it, but i am doing it...

i hope the holidays were pleasant for all... i know i discovered another warrior lost her battle just before the new year... the silver lining is she was able to spend christmas with her family... just didnt make the new year... randi will be greatly missed.  she was an inspiration to me and many others.  my thoughts and prayers go out to her family and friends...

i was also trying to stack my luck for this new year... i have heard if you eat black eyed peas on new years day then you will have a good year... the last time i tried this was 2006... and that was the year my son was born, and i married my soul mate.  since hindsight is 20/20 i see that was a really good year... and even if i didnt like the taste of em... i shoveled as many black eyed peas as i could stand... 2011 was a mixed year- some good, some bad... but i gave in to my superstitious side this new years and tried to stack a little luck to make this year a good one... i know it sounds a little crazy... but if you knew me then you knew i was already a little crazy... then a cancer diagnosis.  i am just happy 2011 didnt bring me a rubber room... but i am learning i have more strength than i knew i had...

i will try not to be absent so long before my next post... i want to be able to share my experience on interferon... since that starts next week i will try to pop in at some point and update... 

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!!!