I didn’t make it into see the doctor last Thursday on the 12th. The pain was just too much and I thought there was no way I’d make it up and down the stairs, muchless spend a half hour writhing in the wheelchair.
It turns out I didn’t even need to go. Dr. Kukunoor didn’t have the CaT scan results; they were never delivered. He told us he would get them by Friday and call us then. Kasha and I thought it fair enough, but I was pissed that the scan office didn’t get them over; or that Kukunoor’s office didn’t at least request them earlier. One full week?
The next day my doctor called midday to say the results were in. And the tumors were…
the same. No changes. Buster was still sitting there full-sized in my pelvis, smirking. The ones along my spine continued to dig in and threaten the health and mobility of my body.
“So there’s a chance the chemotherapy did nothing for me?” I asked.
“That’s a possibility,” said Dr. Kukunoor, “But the likelihood is that the chemo kept your tumors from growing any further.”
I was confused and even angry. Five months of hell for a likelihood. Chemotherapy is not easy. It saps your body and takes away life, all for the possibility of giving it back. It’s not a sure thing.
Jennifer from the Center for Pain and Supportive Care (my pain pump people) also called that afternoon, concerned about the level of pain I’d had. She asked if I would like to come in to the westside office and I said no. I thought about this and realized I’d have to get up sooner or later. Especially considering Michael’s (my brother) wedding the next day! I asked Ruth to call back and say we’d go. It turned out, as long as we arrived by 3pm we could get an appointment.
I called my sister to see if we could use her van. I figured I could lay down in the back of the van, instead of sitting upright in our car. She agreed to come down at 2:30, and when she arrived she had our dad with her. He was in town for the wedding and came along to help. I was dressed and stood at the edge of the bed. PAIN! I sat in a rolling chair, getting to the front door. I used the walker to get out to the front steps. My dad stood close by with his hands out, ready to steady me or catch me in any way he could. I started down the steps and, though there was pain, I managed to make it to the foot where the wheelchair was waiting. Into the van, Melissa had prepared a blanketed bed for me. I laid down all the way to the center, with Kasha looking back at me with concern every few minutes.
I got in to see Dr. Berger soon after arriving. He was really only able to increase the rate of my pain pump. I agreed to a 30% increase, along with a small increase in my bolus- the remote device I carried with me to administer pain relief. I was again told about the medication that may be able to help me with nerve pain. It wasn’t available right then, but I could have it added to my pump at the main office in Scottsdale.
I made it back home and into bed. It was nice to see my dad and Melissa. I had felt cramped up all week long, in pain with nowhere to go. I would be going to Michael’s wedding the next day. It was in doubt earlier, since the thigh pain began, but I would go after all. I was a groomsman, after all!
The wedding was a tremendous experience and I hope to tell you more about it soon. Michael & Shauna were married amid over 100 people. The audio and visuals made it all like a major performance. I was glad to be a part of it and be there for Michael. At the end of the night I told him how proud I was of him and hugged him.
Today I went back to the hospital for a dye test. I had been having extreme pain in my chest during intravenous pushes of an antibiotic. We couldn’t figure out why it was happening. A nurse who comes to the house said it could be due to a hole in the catheter of my power port. Oh, no. If that were true I’d need more surgery to take it out.
I arrived at the hospital at 9:30. Getting down the stairs of the condo hadn’t been hard. I’ve been getting into a groove the last few days. I went through admitting, then sat in the radiology lobby for just 15 minutes or so. Vince came to get me. I like him. He had helped me on my very first hospital appointment 5 months ago. I changed into my hospital gown and then was taken to the same bed I had on that very first visit for a biopsy.
Ruth was with me (my mother-in-law). We waited quietly. I hadn’t been able to have any food or water since 4:30am. My mouth was incredibly dry, like a cotton ball. I knew there was no use asking for a smidgin of water to ‘wet my whistle,’ so I just laid there.
I was taken back to surgery around 10:45am. The doctor had already come to my bed a bit earlier to tell me what would be done, so I was prepared. The surgery team put me on a very narrow slab and then attached plastic pieces along the side for my arms to rest in. An IV had been prepared in my hand, but this wasn’t used yet.
A large, square device hung over my chest, and on a screen I could see an X-ray of my chest, complete with ribcage, my power port, and the catheter running through my vein. The doctor came in, attached a needle to my port and squeezed dye into my chest.
“Yep, there’s a hole,” he said. “You see that?” he said, pointing to the screen. “As I pushed the dye, a very small amount leaked out near the top of the catheter. It looks like we’ll need to replace your entire port.”
I went on to learn that the catheter had been threaded between two bones, causing it to weaken as I lifted my arm and finally create a hole. Damn, surgery. I agreed to it right away, though. The surgeon told me it may be possible to do it that day, if my insurance company signed off on it. I would need to wait about an hour as they worked it out.
I went back to my room and watched TV. Nothing really on, even though shows are geared toward poor folks like me, who are home from work due to an accident or some unfortunate state. Within 45 minutes or so we had an answer. Surgery had been approved. Soon I was wheeled back into the room and hooked back up. This was surgery with only local anesthesia, so I wouldn’t be knocked out.
I was given a series of painful shots around my port, and finally one through my jugular vein. I felt ripping, as though something in my chest was being forcibly removed. All of this was almost too much for me, though no going back now. I graciously fell asleep, waking to the voice of a nurse telling me it was over. Really? Yes, all done. I could go back to my room for food and liquids, a brief recovery time before going home.
I was given a turkey sandwich, chips and an orange juice. Ruth had bought me a large bottle of water. I finished it all, and in no time I was heading out the door, home free.