The power of fear

Hi:
I wanted to post about that which we all experience, to some degree. It’s fear. Of the unknown, the unsure, the unresolved, the future, etc.

For a little background on me: I was diagnosed in March 2011 with intrahepatic cholangiocarcinoma with lymph node metastasis. It is still inoperable. In April 2011 I had surgery to clean out the lymph nodes (most of which were caught… unfortunately there are still 1 or 2 in me wth cc). The surgeon also implanted a liver infusion pump to bring the chemo directly to the tumor. After lots of heartache we finally got it working in August. (see Liver Infusion Pump topic if interested in that story). I received 7 rounds of Gem/Ox and now am getting FUDR thru the pump and Gemcitabine only. The oxilaplatin is not being used as my neuropathy is not going away.

Anyway, my fear story goes like this: about 6 or 7 weeks ago (shortly after starting pump chemo) my back really started hurting. It was in the general “bra strap” area and radiated around to my side, much like the gall stone attacks I used to have. The pain stopped in the back, thankfully, as when the pain radiates around, I worry that I have more stones hidden in my bile ducts where they can’t find them. I have had a few of these instances which immediately send me to the hospital. So after complaining for a while, the pain was becoming too intense. I would get up in the morning with a 1 or 2 in the back, and within a few hours it was up to a 5 or so. By the end of the day it was around an 8-10. I was getting scared about what could be causing it. So we ordered a spinal MRI. I had the MRI a few weeks ago, but didn’t hear back from onc’s office. I wondered if that meant there were no definitive answers. So going against my normal “pushy” self, I waited to hear. And waited. Yesterday I met with the onc and my surgeon about my CT scan from last week and the MRI.
I have been stressing about meeting with my surgeon again. “What does he want to meet with me for? Is this good news? Will I be having surgery again soon? Has the tumor shrunk? Has the tumor grown? Is the back pain because the cancer is spreading?” and many more questions ran in circles thru my mind OVER AND OVER!!
The back pain was steadily increasing. I take as few meds as possible. Actually except for the meds needed because I have all this titanium in me, I hadn’t been taking anything. The pain was getting so intense that I finally broke down and took oxycodone to try to break it. It scared me so much I knew the stress and fear weren’t good but I got caught up in it. My nights became one pain-wracked, shaking, crying episode after another. With little sleep. Asking God over and over to please just get rid of some of the pain long enough for a couple of hours of sleep! And in the past week or so my abdominal area has had twingy pain and lots of discomfort: where the pump is, where the tumor is, and funnily enough, the other side of my abdomen from the liver, where there should be NO discomfort.
Thank God I don’t work right now. I don’t know that I could have handled much of anything.
So I went to the drs. yesterday. My onc said the back pain is from arthritis and a slightly herniated disk. And a few other spinal related problems. I saw the MRI results and am so happy there’s no sign of tumor or anything else. I knew about some of the arthritis but not about the disk. And guess what? My back still hurts, but it’s much more manageable now that I know what the problem is and now that I know it’s not cancer-related.
And my abdominal problems are from: the bloodwork shows my liver functions are too high for chemo thru the pump so we are taking a slight break. The pump also went dry, probably because of too many hot showers trying to break the back pain. The nurse DID get it working again, thankfully. It isn’t supposed to run dry or it stops working. But if the pain is anything to go by, it went dry on Sat. and my appt. was on Monday so it wasn’t too long. That could have caused some of the pain, too, knowing my body the way I do. As for the pain above the pump site, where there should be no problems? I don’t know, but it’s gone since the pump is working again so I won’t complain…

So to round out the story: the fear of the unknown and uncertainty of my results caused me to let it get the better of me. Just ask my friends: I’ve been a basket case for the past week, living with unbelievable pain that is now bearable because I have an answer!! And it’s a good answer!! So please, don’t let the fear win! Get your answers! Don’t sit and wonder like I did! And the funny thing is that I’m not like that. I usually call whenever something isn’t right. If I had called 2 weeks ago, I would have had a much easier couple of weeks. OK I would still have been stressing about the drs. appts. but at least I would have had ONE of my answers!

Kris