So Fed Up...

I am so fed up.  I'm just over it all.  I try to stay positive, but I'm really struggling with that right now.  

Last week on Tuesday (1/14) I saw my gynecological oncologist for a check up from surgery.  I told him that I still have ripping pains and the pain in my lower pelvic.  I am really nervous that the endometriosis is coming back.  They said there was a very small chance that it could come back.  It wouldn't surprise me because that would be my luck that it would come back.  I haven't had good luck with anything else, so it wouldn't surprise me.  He told me that he wanted to keep an eye on it.  He scheduled me for another appointment in 3 months, after my next CT.  But he said if my pain got worse to call and get in sooner.

Well, never fails, 2 days later I get horrible pain.  I woke up Thursday (1/16) and couldn't believe how much pain I was in.  It was a different pain.  More like a stabbing pain.  It was on the left side right above my incision.  It was so bad that I couldn't bend down or stand up straight.  It was even so intense that I had to leave work early and went home and took pain pills.  I hate taking pain pills, I only take them if I'm in lots of pain.  I went into work late Friday and took it easy the whole weekend.  I felt really good on Sunday.  But then Monday (1/20) I was at work and all of a sudden at about 2 p.m., I got these horrible pains again.  Out of nowhere.  The only thing I could think of was because I was busy at work so I was walking around fast and bending down a lot.  

I ended up calling my doctor Monday afternoon because I knew that this wasn't normal.  I shouldn't be having pains this bad this far post-op.  It's been 23 weeks since my surgery.  Unfortunately, I never got a call back Monday.  So I tried again Tuesday morning.  The first person I talked to wanted me to go to the ETC (City of Hope's version of ER).  I told them I did not want to go there because when I went there before nothing was accomplished.  I wanted to see when I could see the doctor next.  His P.A. ended up calling me back and first she brought up me going to the ETC and I turned her down as well.  She went and talked to my doctor and they were able to get me in Tuesday night.  

Just my luck, just like every other problem I have had.  They do not know what is wrong with me.  They think it is something muscular/skeletal.  Everything about me has been puzzling to my doctors.  He said that if I had increased the tamoxifen, he would connect it with that.  But I have DECREASED the tamoxifen, so I should be feeling better by now.  

So I will be seeing another doctor to see if can get some answers.  Ughhhh so frustrating.  

Tillllll then, I'll just veg out and take my pain pills...

3 More Months...

Just a quick update from today's appointment.  I saw both my medical and surgical oncologist.  I hadn't seen the medical oncologist since my very first visit to City of Hope in June.  

I went into this appointment all mentally prepared for chemo being the next step.  I was all ready for it.  Simply because I am so sick of being miserable.  I do not sleep at all.  The hot flashes have gotten so much worse.  All day and all night.  

Well, my medical oncologist didn't want to switch to chemo yet.  Since the Tamoxifen/Sulindac combo is working, he doesn't want to go to something that isn't guaranteed to work yet.  But, my dosage did get lowered.  They changed it from 6 pills to 2.  And added another medicine, Effexor, to hopefully help with the hot flashes.  

I was kind of frustrated because I tried asking for a lower dosage in August and my surgical oncologist instantly said no.  But on the plus side, they did think that the tumor had gotten softer than the previous visits.  

I have mixed feelings about how today went.  I mean, it's good because the Tamoxifen/Sulindac is working and it's good because it is a less invasive medicine.  But, I'm just frustrated.  I'm sick of being miserable.  I was just ready to start the chemo because the chances of it shrinking faster were much greater.  But they're the doctors, they're the experts, I trust them for that reason.

As long as I'm feeling ok the next 3 months, I will continue with 40mg of Tamoxifen (versus 120mg), Sulindac, Gabapentin, Clonidine, and newly added Effexor.  I sure hope get some relief with this!!  I go back in April for another CT scan and will see both of my oncologists again.  

My sister sent me a care package and included a journal in it.  I have been trying my best to write in it everyday and including something positive that has happened that day.  Some days I really have a rough time doing it, but I'm working on it.  It's my outlet.  So far, my high points in most of my days have something to do with work.  Only because that's all I do.  I go to work and put on a fake act because those around me have no idea what I'm going through. Then I come home and lay in my chair because I am just so exhausted.  I'm trying my best to stay positive.  Keyword=trying.  

Here's to a new year… can only hope it is better than 2013.  I will never ever forget the year 2013, when my life changed forever.