i *think* my last day of radiation was july 31. i was supposed to make an appointment the following week with my oncologist so he could evaluate my chemoradiation treatment and put an order in for my scans.
i waited.
and i waited.
i finally made the appointment for august 19.
yes, i know this is a long time from when my radiation ended. yes, i know it wasn't the best thing to do. but, i did it. and i will defend my decision. because in those weeks we went to the fair. we went to the pool. we had barbecues. we had the beach in the day and bonfires in the night. we had playdates. we just got to "be." and i won't regret that. the last week of my radiation bobby came and sat in bed with me as he often did and said, "so, how long are you gonna be in this bed anyways?" i owed it to my boys - all four of them - to be out of that bed. as i know it is more important for me to be here with them for as long as i can be, and to fight this disease with everything i have, i refuse for them to only remember me sick. and if it means taking a few weeks off in between treatments to erase the prior months (or atleast try to), i will do it. and it will always be worth it. (plus, a few weeks off brought *some* sanity back, which i'm sure they all appreciate. i know i do.)
so, i made my appointment a little later than expected, but figured because it was for scans, it wouldn't really be that big of a deal.
my appointment did not go as planned.
i expected one of those visits that you pay the $20.00 copay just to be told to make another appointment and get asked a bunch of questions. i took the kids with me as bob was out of town, but figured if anything it would make the appointment go faster because the boys would get rowdy and they'd want us to leave. instead, i walked in with the lot of children. the staff oooed and awed over my gorgeous looking guys (can you blame them?), and they directed me back to an exam room. exam? couldn't we just meet in his office? my doctor met me in the hall and walked us in and said, "i'm going to be doing an exam." huh? what? seriously? i have my kids? he didn't seem to care. i turned the boys to the wall and gave bobby his gameboy...and well, i'm sure the ladies know the rest. figuring there could be nothing else to ruin my day...
he wanted me to start chemo the next week. and he wanted to schedule a surgery to insert a portacath. the chemo he would like to administer has to be done over six months. it would be given three times a week for one week, then off for three, and again three times in one week and again off for three - for six cycles. i will lose my hair. i will be sick. i will need to drink lots of fluid as this chemo also attacks the kidneys. i would not be getting any scans until after this chemo was finished. my lymphnodes are still swollen from the radiation - and if he did a scan now, the results would be inaccurate. he wouldn't know if they were swollen from the radiation or if it was because the cancer had returned. so he will not be doing any scans for three months. another three months to find out if i still have cancer.
i cried.
i told him i didn't want to do it. and even if i did do it, i refused to get a portacath. this did not go over well with his nurse who hated me every week i had to go in during chemoradiation and could never seem to find my veins.
but they agreed to let me do it without the portacath since i had so far, done everything they had asked. i told them i would call them the next day after i talked it over with my husband.
i haven't called them yet. it's been 9 days.
i have this line from a movie stuck in my head - "it's not brave if you're not scared." and i keep hearing it over and over again. i don't feel brave. but i do feel scared. i don't have any other choice than to do what i'm told. i have to trust that this doctor knows what he's doing. i need to have faith that this will turn out how it's supposed to. and i need to know that i am never alone.
i emailed the doctor this week asking if i could delay treatment - wait for scans - basically kicked and screamed to not have to do this next round of treatment.
here is his response:
In the long run (and from an "emotional" standpoint) it would be best to aggressively treat your cancer. It does make a potential difference if there is a delay in treatment.
Years from now, if you are cured, you will not really remember the emotional difficulty you are going through right now.....this is why it is so important that everything is done in just the right way and in just the right order.
Once you get into the chemotherapy you will probably find (like most patients) that it is not as big a deal as you might imagine it to be.
You've got some pretty great young boys and, believe me, I know what you are going through right now raising them (been there, done that). I know you would do anything for them..........well, think of the treatment of your cancer as a job that you are doing for their future.
Karen and I and all of us on this end are going to get you through this.....
One final note.......please rethink trying to get through this without a portacath.....
i'll probably call the office next week. i'll most likely start chemo the week after. i don't like to be told what to do. but i'll do what i'm told. so i can travel the world with my husband when the kids are grown. and so i can see my kids grow.
but contrary to his belief, i will NEVER forget the emotional difficulty this disease has caused - or the strain it has put on my family.
and...
i won't get a portacath...
