Friday, August 28, 2009

it's not brave if you're not scared...

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...

7 comments:

shari berry bo-berry said...

Dear Jenny,

You are brave, even if you don't think you are. I think you are. I think you are an amazing woman, wife and mother.

Kudos to you for taking a few weeks of to be "normal" again...I know it was much needed and DESERVED.

We continue to pray for you and hope that you will receive the strength and comfort needed to make it through this.

By the way...are you the Jenny J. who won the Shopping Cart Caddy from Blue Cricket?? I am pretty sure it was you. Congrats!!!! I'm jealous. :)

Jillyboo said...

Please tell me that you won that shopping cart caddy after seeing it on my blog and then entering it. That way I will not feel bad lifting it from your home next week while we are partying.

And on a serious note, as we are so rarely on one, I love you. I admire you and every single step you have made along this heart-wrenching journey. My heart literally hurts for you. And I hope you know how much I want to just take this all away. Far away from you, your boys, your Husband... everything. But I know that Heavenly Father , in his wisdom, has chosen you to travel down this path. I have no idea why. I dont think its fair. I have to remember to not be angry. But I also know that he has been through every single pain and emotion that you are experiencing. And that he has promised you that he will NEVER leave you alone.

What a great month for you. I am happy that you have been able to enjoy your days and to gain the strength you'll continue to need to fight this. And though I am far away I am fighting it with you, somehow.

And I agree, never forget. It is what will help add to who you will become after all of this.It is what you will use to inspire and to give faith and hope the lives of so many others, you already do this for me.Its molding you into who you have the potential to be and the end result is going to be glorious.

I know its selfish but you have already inspired me to be better at all I do. You are what helps me to be more patient and loving with my kids and to aspire to be better. I owe you so much already.

You are my hero. I am so grateful to be able to call you one of my best friends.

Okay. Im done. I love you. I am proud of you. Call the office tomorrow:)

And im so excited for our little vacation, its going to rock.

Jillyboo said...

Wow!! I just re-read that comment of mine... sorry for the cheese. Not that it's not all true but, you know.

See you in 3 days!!

Debbie said...

You are brave! I marvel at how brave you've been. As I have watched you go through this, knowing you are scared to death inside, I marvel at how strong you are. This time next year when you are feeling back to normal, this will be just a bad memory, yet you will be a stronger person with a stronger testimony. Just know that I will be there for whatever you need. As a nurse, I say " get the port a cath" It won't bother the boys as much as you think and it makes it easier for you for lots of reasons you probably aren't aware of. We can put a dressing with a pretty Fower on it when not in use. Give youself a break, you are entitled. I love you, Deb

Wendy Ferguson said...

I just wanted you to know how awesome i think you are. Hip hip hooray for you in taking a "break" for some normal fun time. Im glad that you came to club fergie and we got to laugh it up. You got some mean ol school dance moves. :)
I say...(not that it matters ) that you are a strong, courageous ,spiritual woman who can make inspired decisions. you go girl. Let me know if you wanna take an afternoon temple trip. i can watch the boys or go with! Im gonna find you a stylin hat. hair's overrated. :)

Just The Four of Us said...

You are amazing, and I mean really amazing. I can't imagine your pain and your aching heart. However this is your trial in life you are only given what you can handle and your Heavenly Father is right there with you. We think about you guys more then you think and you are in our prayers all the time. We love you guys.

Susanne said...

I just wanted to tell you that you are in my most heartfelt prayers. And in my thoughts. I want so badly for you to beat this to enjoy your beautiful boys and do live every good dream that you have. I think you're brave. And I admire your courage. Not much else to say... you're in my prayers.