On Wednesday, February 8, 2012, I transitioned from being under anesthesia for a little over an hour to a full consciousness of pain. Had I been shot or stabbed? Is there anything worse? The only word I could say was "hurting" over and over again. And when my friend, Jackie, came to take me home and gave me a hug, I only remember saying to her "hurting". What have they done to me? I could not lay still and when I sat up, I was still moving on the bed like a caged animal. I knew that moving around was making it worse, but I couldn't help myself. All of these people around me and no one can give me instant relief from this burning pain? Oh, God, please stop this pain!
One of the nurses told Jackie that the doctor had decided to keep me in the hospital for overnight observation. I would not be going home after this second ERCP. In fact, I was not dismissed from the hospital until Saturday. Two liver surgeries in two weeks may have been my body's limit. My entire midsection was hurting after the first surgery, but this was 10 times worse. I felt like I was going to die from the pain.
At some point, one of the nurses inserted a small amount of fluid from a small needle through the tubing of my IV. Within 5 minutes, my entire body became comfortably warm. That feels wonderful, I thought. Within another 5 minutes, I was laying still, enjoying this magical pain killer. On a scale from 0-10, I was now at a pleasant one, and all I wanted was to curl up into a ball and sleep. One of the nurses also noticed that I was grasping for air, finding it hard to breathe, so they hooked me up to supplemental oxygen. I hadn't even noticed. I was just so glad to not feel any pain that breathing had become inconsequential. I remained on the supplemental oxygen the entire hospital stay. Since I had calmed down and they had found a room for my next few days of stay in the hospital, I was wheeled away.
Over the next few days, I began to rely on that pain killer in that small needle. I could have it every six hours, which was torture because it only lasted for four hours. And I had to ask for it. The nurses would not offer it. But when I did ask for it, they would either tell me that I could have it because it had been six hours since I'd had my last dose or they would tell me that I could not have it because it wasn't time yet. It was embarrassing to ask for the pain killer. It made me feel like a drug addict. And I could not keep good track of time because once I had the pain killer, I would sleep for an indeterminate amount of time or until it was time for the next set of vital checks: blood pressure, temperature, sugar, and oxygen level. They would also occasionally listen to my lungs, give me potassium pills, check my blood, give me a shot in my stomach (not really sure what that was for), and give me a pink liquid to drink (not really sure what that was for either). I also had a constant IV drip for fluids and antibiotics. Any other time I would be conscious enough to ask what's the name of that drug, and why are you giving it to me, but pain and pain relief leave you with a cloudy mind and all you can think about is how bad you feel when the pain is there and how good you'll feel when the pain goes away for a few hours.
The gastroenterolgist came in every day to check up on me. The stent that he had placed in the bile duct during the first ERCP was plastic and although it was placed and working properly, it was not solving the problem. He decided that he would replace it with a more permanent, metal stent. But all of that movement with a tube through organs and by organs had irritated the pancreas. And it was pissed off royally! Pancreatitis, he told me, involved inflammation and swelling, but it was one of the hardest conditions to treat because the pain was so intense. Hah! Tell me about it! The only thing he could do for me was to give me pain killers until it healed on its own and that would take some time. Who knows how much time.
I couldn't breathe, and I was coughing a lot, even with the supplemental oxygen. I had to have three breathing treatments during my hospital stay. These treatments were also wonderful. All I had to do was breathe normally while my lungs filled up with the medication from the mask. It was the only time I wasn't struggling for air. I also had three chest x-rays. The problem with the chest x-rays is that they can't distinguish between the lung tumors and pneumonia. They look the same on the scan. More than likely it was the tumors causing the problem, but we had to treat the problem as pneumonia, because the lower half of my right lung was collapsing.
Two more of my co-workers came by to visit me on Thursday (another Jackie and Brenda) and one on Friday (Dennis). They really lifted my spirits, telling me of all of the happenings in the office. I was really out of my comfort zone, because I knew I looked bad with the jaundice in my eyes, hair all over my head, and tubes and IV bags everywhere, while the nurse is busying around poking and prodding me. When I feel bad, I just want to be alone. However, they were so upbeat that they made me feel better and took my mind off of the pain for a while.
On Saturday, I was finally released from the hospital. My only regret was that I would not get the pain killer any more. I was still hurting quite a bit and sending me home with Oxycodone was not going to get it. But I also wasn't turning it down, lol.
Eating was another problem. Up until Saturday morning, I was on a liquid diet (jello, popsicle, tea, water, and juice) and wasn't finishing those meals. My stomach feels full and after a few sips, I can't take anything in without pain or wanting to vomit. But on Saturday morning, when the dietary person brought in my tray of solid food, my stomach opened up some space. I had a scrambled egg, a biscuit with jelly, Cheerios with low fat milk, and juice. I was surprised that I was able to keep it down, but it was also after I had my last dose of the pain killer so that must have been the trick. Eat when you're not in pain.
The remainder of the weekend was spent in the comfort of my own bed. I didn't feel like doing much. I was burned out on the television, and I couldn't keep my eyes open long enough to get any decent reading done. My main concern was minimizing motion and controlling my pain level with the Oxycodone, which I was taking about every four hours, but not with the relief of the pain killer that I was given in the hospital. Did I mention how wonderful that drug was, lol?
On Monday, I was not able to return to work. On Tuesday, I had an appointment with my oncologist. If the second ERCP worked then I should be able to restart chemotherapy. My oncologist sent me to the treatment room to start me on a two hour IV bag of fluids, while we waited for the results of my liver numbers. The bilirubin was still increasing, higher than before the second ERCP. Would they suggest a third ERCP? The thought of it almost made me want to cry.
Instead, I was scheduled for a CT Scan of the chest, abdomen and pelvic areas on Wednesday. The gastroenterologist did not feel another ERCP would help. It was decided that the liver was failing because of the tumors and would probably work just fine if we could do something about the tumors. I had just had CT Scans in December and January, so something must have drastically changed in less than a month's time. There was definitely more progression in the lungs, but the most significant change was that my liver is now comprised of 50% tumors. Half of my liver is tumors, and the other half of my liver is barely functioning. I was immediately kicked out of my last clinical trial. Most chemotherapy drugs, especially the newer drugs depended on the liver for metabolization. My liver was not in a position to metabolize anything.
I'm distraught. My oncologist sits and looks about as distraught as I feel. She flipped through the file, reading and rereading. I could see the wheels turning. She was also thinking and rethinking. "There's one drug, an older, conventional drug that you've been on before with your primary breast cancer. Insurance may have a hard time justifying approval. Do you want to try another drug?"
She knew that I did. I could see the relief on her face when I said we should try it. She left the room for a few minutes to check files and to get me started on the drug right now. Gemcitabine (Gemzar) is a kinder, gentler chemotherapy drug if used by itself. She would also reduce the infusion time to 30 minutes from 60 minutes, and if I handled the toxicity, she would increase the dosage. The most important thing is that the liver does not have to work as hard to metabolize it as it does with other chemotherapy drugs. If the 50% of the liver that is remaining can help out just a little, we have a chance of shrinking the tumors in the other half of the liver. It will give me another two months (eight months from this past December) if this works. I'll take my chances. It's a 4 week cycle. Once a week for three weeks followed by one off week. So, on the heels of bad news, my oncologist comes up with some good news. Have I mentioned lately that I love my oncologist?
5 years ago