Scared Spitless

OK, I am now officially scared spitless.I saw Dr. Zervos today.  The surgical oncologist.  He has never seen me alone and wanted to know where my 'entourage' was.  I told him they trusted me to get the information all correct on my own.  He just checked my weight - down 1/2 a pound from last visit and he wasn't happy about that, BP 111/77 - good.  Checked my port, happy I had started chemo.  Happy I was gonna get my trip to Oregon.  Said of all of the gallbladder cancer patients he has seen he is quite certain I can beat this.  Well, I felt that all along.  Besides, what's to 'beat', the cancer is gone right?  Except maybe some stray cells in my blood.So next visit is with the doc that will be doing my radiation.  REALITY CHECK!!  She was very nice explained about the CT scan, marking my abdoman for radiation, etc.  She leaves and the patient coordinator comes in.  SHE'S the one with the bad news.  Explained about the Hope Lodge.  I will need someone with me 24/7.  Doc will write an exemption for the 1st week (maybe 2), but after that I'll need a 'caregiver'.  Asked me what I was told about side effects.  I said well all the docs had said I COULD have these different side effects, wouldn't know for sure.  I explained I had been with my sis for part of her radiation for breast cancer.  No diarrhea, etc.  Much fatique and 'burned' skin though.  She says gallbladder cancer radiation is NOTHING like for breast or head or cervical cancer.  Because of where they have to aim the radiation it is absolutely gonna impact my gastro-intestinal tract.  I WILL have raging diarrhea, throwing up, problems with urination and terrible fatigue.  Can't take food to your room at Hope Lodge, hafta go to the kitchen and fix your own meals (or your caregiver fixes them), and you have to eat there in the dining room.  If I'm gonna have all these problems, how is that gonna work?I will have 28 days of radiation.  M-F.  As it stands I will PROBABLY begin Dec 7.  I'll have off Dec 24 and 25 for Christmas and then off New Year's Day.  My DH will be my 'caregiver' until at least after Christmas.  Then we will see who else I can enlist.  The lodge suites are 2 rooms.  A living area with a recliner, couch, TV and desk, and a bedroom with 2 single beds.  No need for a car.  They have a shuttle that takes you to and from your radiation and to the grocery store and drug store if needed.After I finish radiation I have to go back to the chemo!  I'm not sure I can do this.  I'm not sure I WANT to do this!!  I feel so good now, why do I want to put myself through all this misery?  I have to do some hard thinking and soul searching!

Grammy - this must be awful for you. I hate to have to see you go through this.  If it were me, I THINK I would want some statistics from the doctor, such as: what percentage of patients with my condition survive without the radiation and/or chemo and for how long; what's the survival rate with treatment;  what stage is my cancer; how would it affect my disease if I postpone treatment for a few months; what are the chances of a recurrence. 

No one can say for sure what they would do in your situation but I always want numbers that can help me make my own decisions and with additional information you can do some research using reliable internet sites. Then again, maybe I wouldn't be so logical and methodical about it.  I just don't know.

I am so sorry you have to do this. I wish I could be there to help you. This is a decision you have to make. You have a good life to live & lots of reasons to fight. When I went through chemo, & mine wasn't bad compared to what they told you, I also had doubts. Take everything into consideration. Your DH, kids & grandkids & of course your sister. Sounds like you have people to help you. You will be amazed at how strong you & everyone else will become. Please feel free to call or e-mail me if you want to talk.
Nan

Grammylew,
So sorry to hear you will have to go through this involved radiation treatment.  Have you had a lymphandectomy?  I am in remission for uterine and cervical cancer.  I had a full hysterectomy.  I was shocked to find out after my 6 to 8 weeks of recovery from that I had to have a lymphandectomy too.  This involved a cut from my sternum to my bikini line and took another 6 to 8 weeks recovery.  They went north, south, east and west and collected lymph node samples to test.  They all came back negative thank goodness.  So I had six weeks of radiation treatments twice a week after that.  I was told the lymphandectomy was to determine my course of radiation.  Yours sounds much more intensive.
I hope that all they have prepared you for does not come true.  You have much more of a challenge figuring out what you can eat and what you will help your intestinal tract tolerate the radiation treatments.
My thoughts will be with you.
Take care,
Bev

Carolyn,
I really wish there were words to comfort you and ease your stress.  I don't know what you're going through, but I do know that I too would be scared spitless or something like that.  The treatment won't go on forever, so you can see a light at the end of the tunnel, and hopefully the treatment will destroy the disease.  I'll continue praying for you, DH, Sister, kids and grandkids.  Strength and peace to you.
Jan

That was a whole bunch of information to absorb at one time. Sleep on it, take your time and let it sink in, THEN make your decision.

A big warm hug is headed your way. Don't be afraid to vent here.

Kisses
Annette

I'm truly sorry you are having to go through this.  It must be very frightening.
Try to get some sleep tonight (I know, easier said than done), and think about it tomorrow.  In the light of a new day I'll bet you are ready to fight and do what you have to do to get well.

Wish there was something I could do or say to help.
Just know there are lots of well wishes being sent your way.

Ruth

we're all here loving you and sending support in whatever you choose to do....prayers continue for you and your family...and the strength to do what you need to!

As has been said above, it is your decision.  But rest assured, regardless of the decision, you have lots of prayer partners here.  You will be in our prayers.

I've never dealt with anything like what you are dealing with so have no wise advice.  The only thing I can offer is sincere prayers for you and your family.  May God be with you all.