it's been a while...

I cried myself to sleep last night. This comes after a long day at Mass. General Hospital. I am fine... For those of you who don't know, I was diagnosed in 2001, with a benign soft tissue tumor in my knee. This tumor is very rare. (2 in 9,000,000). Yeah, that rare. Well, I had a bunch of seriously intrusive surgeries, with no real cure. I still am battling this tumor. Still... I haven't had surgery since 2004, when i found out i was pregnant... (good reason to not have surgery)... well, i lost that baby. As we planned yet another surgery, and all that it entails (3 months of rehab...) I found out i was pregnant again, with Owen. So surgery was on hold again. When Owen was 5 months old, i had planned on looking into surgery when he was about 1, i got pregnant with Addie... surprise!!! In the years following Addies birth, i couldn't imagine taking 3-6 months off from life to; a. think about myself, and b. become immobile for a long time, and c. not go to work, and earn money for things like food... well, now it's 6 years since my last surgery... my knee is a wreck, seriously. I haven't had a pain free day, in who knows how long, and i am just ready for someone to wiggle their nose, and be done with all this!!! Not so easy... The dr. told me my options... which looks like this...

option 1. Do nothing. I have "made" it this far, why take action now...

option 2. Have an incredibly invasive surgery AGAIN... this in no way guarantees a fix, but will take away most of the tumor... for now...

option 3. Have the above invasive surgery AGAIN, and follow it with a monday-friday for 5-7 weeks, of low dose radiation, which has a decent success rate in other benign tumors, but not enough people have PVNS to know if it is really successful... oh did i mention that radiation can cause, yeah, cause, malignant tumors when used to zap benign ones... right... tempting.

option 4. claim insanity, chop off my own leg, and see where i end up...

i am in a pickle... (mmm, i want pickles...) well, this is not all the choices i have to make... the last, slightly less important, but highly difficult, timing... when do i do this? (if i chose option 1, i guess i am already doing it... go me!) I have a lot of things in planning stages for this summer,(including our 10 year wedding anniversary!) and frankly the last thing i want to do during the summer, is lay on my back in searing pain, waiting to be driving in for radiation therapy... If this was all up to just me, which it is not... i would have not left Mass Gen yesterday. I would have had the surgery, and then dealt with the rest as it comes. Mike, not the bad guy, wants (or in his head needs) to wait until we don't have to buy oil again for the year... me being out of work, him being unable to pick up overtime... it all adds up to hard times... but it's kinda like waiting to get married/have kids/buy a house, until all your bills are paid... THAT NEVER HAPPENS!!!!! Something always comes up... always... the longer we wait, the less likely i am to have a knee at all... the dr. also mentioned that if i end up waiting too long this tumor is going to cause such bad arthritis that i would need to have my leg amputated... now, i am not jumping the gun, and saying that i think that this is going to happen in the next few months, or even years... but i guess this little bit of info really makes me realize how scary this all is... it is not going away... i am not ever going to be able to have the life i imagined having... camping, hiking, skiing, biking, all those fun out door activities, i love, are lost to me... for now... unless this whole thing turns around, and the radiation ends up being what i chose, without complications... now, do you see my problem... everything hinges on "IF"... nothing is really in my hands. and that is what is making this so difficult. well, that and then there is last night... i was searching for other PVNS, let's call them victims, in Maine... last i knew, there was me, and two older men. One of the men died in a car accident... (totally unrelated)... the other had ONE surgery... ONE, and was completely cured (which makes him no longer a "victim")... i am so glad for him, and so jealous my skin burns... so last night, i found a thirty something woman living in southern Maine... her blog is something like, ihavepvsn... i was hopeful to have found a soul mate... i had to read back a bit in her blog to find the entry of her diagnoses, and then the entry of her surgery, and then i found the entry of her appointment where she discovered that the surgery was a complete success, and she was and would always be tumor free... i am sorry, truly i am... i am a selfish, mean spirited, jealous, hateful, sinner... why can't i be cured... why won't i ever be cured? why do i have to have this forever? why do i have to chose between "sucking it up", and risking getting CANCER... (mike has forbidden me to take any action that may lead to cancer... he just can't bare losing me... )... how do i tell him how lost i am... i didn't expect all this to hurt as bad as it does... really, i am tough, i have a great handle on pain tolerance, and i realize that "this could be much worse"... (thanks)... but man, this really sucks. in the mean time, i have ice on my knee, and a headache. i am going to take a nap... and most likely cry a bit...