Monday, I was scheduled for an EGD in Portland. The appointment was set for 1 PM. I had breakfast at 11 AM and shortly after we were off to Portland. As we approached the outskirts of Portland my memory cells started working again and I recalled my last EGD in January. That memory helped me remember I had been on a fasting order from Midnight to 5:30 PM the next evening. All of which made me realized I had screwed up and broke my fast which would postpone my EGD. I shared with the nurse my predicament. She checked with the doctor who canceled the EGD. Staff then went to work finding me a spot in the schedule ASAP. They found one for Tuesday, early afternoon the next day, and I was in the clear as long as I remembered the fasting expectation.
Tuesday morning, I had a brain MRI in Salem. Then Dameon and I were off to Portland for my EGD.
Wednesday, I had a Fluoroscopy scheduled in Salem. I had to look the word up and found a definition indicating it was a way of X-rays to take motion pictures. I got into the fluoroscopy room, and while I was engaged in a pleasant conversation with the tech person I saw on a screen or a piece of paper, I saw the phrase, Lumbar Puncture. I had my gasps, mostly internal, before I recalled the conversation with my OHSU oncology doctor who said they would need to look at my spinal fluid for signs of cancer. I settled in for the puncture process. I was on the table for approximately an hour. Several punctures later the doctor was yet to see my body giving up any fluid. The puncture process was ended without any fluid. It was determined I may need to come back for a second try. The thought of going through what I had just experienced was one I wanted to avoid at all costs. We went home. I applied ice and heat throughout the evening.
Thursday, it was back to Portland for afternoon appointments, with the Aphersis nurse who examined my veins to see where they would be extracting my T cells, a blood draw, and a conversation with my OHSU oncologist. The conversation with my oncologist started with an uplifting note. The doctor had already heard about the lumbar puncture. If the brain MRI showed no abnormalities, then there would be no need for a lumbar puncture. During this conversation the oncologist presented the reason for moving the T cell extraction back one week to June 2. It was important the chemo drugs from my Cycle 3, day 1 and day 8 were completely gone from my system. The nurse practioner (NP) had been monitoring email notifications during the conversation and at one point got up and went to the computer. After looking at the message turned to the oncologist with a wry smile. The oncologist couldn’t help but noticed she seemed pleased with what she had read. The oncologist read the message and relayed to me the MRI report noted there were no abnormalities in the scan and therefore I would not need a follow up lumbar puncture. YAYYYYYY!!! To those of you reading this if you are scheduled for a lumbar puncture be well hydrated, exceedingly so. I was not.
Friday, no appointments, but several phone calls from MSWs, OHSU and Kaiser, and a person calling to schedule a needle biopsy for my stomach B cell. Tuesday’s EGD led the doctor to assert the B cell was on the exterior of the stomach and thus a biopsy from the stomach interior was not possible. The appointment date offered was June 3 which to my way of thinking was a day late and a dollar short. I referred the person back to the source of the referral for clarification. Later Friday, I began to experience an intense headache, actually a neckache. I was able to sleep during the night.
Saturday, I awoke without any sign of discomfort other than some mild nausea. Maybe a couple hours after arising the headache returned and this time the discomfort was behind the eyes. I chose to lay down on my bed. I, apparently, fell asleep as I was awakened by a phone call from Dameon. The discomfort was gone and did not return the rest of the day. I attributed the headache/neckache to the lumbar puncture, but who knows? Energy level was minimal and as a result I didn’t go for any walks. Standing on my front porch was the extent of my outdoor activity.
Sunday, a day of rest. A couple of walks with Lizzie.
Monday, I was brought back to reality, so to speak. My sister-in-law wondered what time we would be arriving. She had not been informed in the change of dates until I responded to her email stating the date had been moved. The good news for me was I still had a place to stay on June 1. I had complained about my memory during past visits to the infusion nurses and had gotten a response “cancer brain.” Chemo drugs can cause confusion. An excuse to be avoided and yet a very real issue. My thinking had settled into Memorial Day weekend, but not associating the weekend with any specific dates. When May 26 had been chosen as the original date for Aphersis I did not associate the date with Memorial Weekend. I assumed I had another week, which is true now but wasn’t last Thursday when the reasons were provided for the change in date. It took me until last night just before going to bed for the light to go off in my brain and I could see how I screwed up. Until that moment, which was set off by a date I glimpsed before going to bed, I was still holding the weekend and the current dates as two separate items in my head. Talk about a day late and a dollar short!
Tuesday, May 26, I am catching my blog up. I feel OK. Energy level is up. No current discomfort whether in my head or my abdomen. So far, no appointments this week. It could be a complete week of rest. I may not be adding any blog entries if the week remains appointment free. I would like to catch you up after the Aphersis appointment, June 2.
Until the next time, Peace Be With You.
2 comments:
Dennis, So sorry to hear about all of this running around and various tests and drama. Hopefully this too will pass.
The trips and appointments are fatiguing. The next stage in the T cell transplant promises to be just as exciting or do I mean fatiguing?
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