After reading my last post, I see how optimistic I was about getting surgery and being pain free. What a joke. I've come to realize that maybe God doesn't want me pain free. I'm not supposed to live pain free. I sure would like to know why.
The back surgery was a huge success. I walked out of the surgery center pain free. I was so happy. No more shooting pains, no more sleepless nights. I was loving life and making plans. Therein lies the problem. God laughs when I make plans. I think my mom was here for a month or so before and after my back surgery. And she was back four days later. I was without pain for one week. Seven days. Had I known I was only going to have seven more days without pain, I would have lived that week much differently.
A week later, I was getting ready to go swimming with Ken at the YMCA while Cody played water polo. As I was putting on my bathing suit, I got a sharp, stabbing, shooting pain in my upper chest, just below my collar bone on the right side. I thought I just pulled some weird muscle, and it would go away. Ha. Ha. Ha. I went swimming, but the pain was getting worse. The next day, it was agonizing. A day or two later, I was in the ER. Long story short, I have a tumor in my sternum, or breastbone. It was turning the bone to mush. The tumor fractured the bone from the inside out. So, I started radiation, every day for three weeks. At least UCSD has a radiation oncology satellite office very close to my house, where before, I had to go 30 miles one way for a 10 minute treatment. Now, radiation is pretty easy. You lay on a table while a machine does what it does. Takes about 3 minutes start to finish. But don't let it fool you. The side effects sneak up on you like a ninja. This treatment had to go through my esophagus. If you've ever had acid reflux, I had it 100 x worse. I woke up one morning about 4:00 am with what felt like fire coming out of my throat. I have never felt anything like that. Back to the ER for pain meds, and sent home.
Radiation for pheochromocytoma patients is strictly for bone metastases. The rays are aimed at the cancer cells to render them inactive so they stop growing, and then the bone can heal on its own. Just like any other broken bone, it takes time. So, as my fractured sternum was starting to heal and I finished my radiation treatment, it was less than a week when I got screaming pains in my upper left arm (femur). There has been a tumor there for a few years that has never caused any trouble. Until now, of course. But it doesn't just hurt at the top of my arm, it screams through the left top part of my chest and back through my shoulder blade. Back to radiation for my arm.
Currently, I am about 10 days into 15 days radiation treatment on my arm, and this time, the pain is only getting worse. Lying down is the most painful position I have. Laying down on a hard, flat table that is 18 inches wide for my treatment makes me cry every day. Sleeping is a luxury. I can't just roll over to the other side, I have to get out of bed and crawl in to position myself to lay in a different position.
I've come to the realization that I may never be completely be out of pain. We went to a different doctor in the pain clinic who is going to give me a pain pump that is implanted under my skin and gives me pain meds on a regular basis. I will have a little remote control that I can push for extra meds for breakthrough pain. He said some people feel so good, they take off on vacation, and forget to come back for a refill, and then have a really bad time with withdrawals, so I have to stay close to home for awhile. Not that I would be going to Europe or anything. I liked this doctor. He said that he has been following my case, and he was really happy to see me come in. The procedure is done on Mondays, and then I'll be admitted to the hospital for about 3 days while they figure out the right meds and dosage. Then I think I'll be wearing a little fanny pack until the surgery is scheduled to implant the pump under my skin in my abdomen. I was scheduled for the next Monday after the holiday, and was really looking forward to having some relief in less than 2 weeks. And, of course, I got my hopes up, and then the procedure got pushed back another week. I guess my new doctor friend is going to be out of town for Thanksgiving, and didn't want any other doctors caring for me, so I have to wait another week. I'm glad he wants to make sure I'm taken care of, but another 7 days of pain that is worsening every day just made me break down in tears.
So, here I am, whining to you. And for my friends who are texting me and calling me who want to come by and see me, please don't stop trying. I promise that when I stop feeling sorry for myself, I'll call you back. I really do want to see you, I just don't know how to say "come on over" right now. I lost a very close friend a few weeks ago from my support board who has ... oops ... had the same cancer as me. We had very similar circumstances for a long time. And then she got sicker. And then she was gone. We never actually met face to face, but we texted, talked and Skyped. She is why my Facebook picture is a candle. Another family on the support board lost someone about the same time. All the pain makes a person a little wonky anyway, and losing two pheo friends so close together scares the crap out of the rest of us.
My friends, please don't give up on me. And please pray that God doesn't give up on me either.
God is love, and Angie is with Him.
