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.