I have had another little bump in the road. I had a CT Scan a week ago Friday in preparation for my trip to MD Anderson tomorrow (Sunday) afternoon for a Monday appointment. My lymph nodes have been growing and this tells how much and where. (The report talked about "innumerable" nodes that apparently glowed - must be the report writer got tired of counting- ha!) And yes, they have grown, but not as much as they feel like they have grown.
However, the scan showed something else that captured my doc's attention. I will skip some details (believe it or not), including my self-diagnosis on the Internet that I sure didn't like. Earlier this week my oncologist called me at home around 6 p.m. and said he was arranging for me to see a pulmonologist on a walk-in basis the next day and asked me to be there at 8:30 when the pulomonologist's office opened. The reason for my visit being that both lungs in the lower lobes showed multiple areas of "ground glass opacity" on the CT Scan. Now, I promise you I have not been inhaling broken windows, broken dishes, or even fiber glass insulation. Apparently it is a type of fluid in the lung that looks like ground glass to the docs when it displays on the scan.
I was at the pulmonologist's office bright and early, and he saw me as soon as he arrived. I really, really liked this guy even though he failed the "He Can't Be Younger Than My Kids" test. As Cheryl said, he looks like he is ten, but I say early to mid 20's. My oncologist did say he was very good and recently trained. He was very thorough, took lots of time with me and explained everything in detail, going through the CD ROM of my scan explaining things and didn't chide me for doing Internet research and trying to self diagnose - actually, I was almost spot on with all the possibilities, but I had the possibilities in reverse order of likelihood.
The pulmonologist said this is rarely caused by lung cancer, sometimes caused by heart problems, and almost always caused by bacterial or viral infections. The various types of pneumonia that present this way are often quite nasty. This doctor is puzzled because I am not showing any symptoms and, if I do have any of those types of pneumonia, I should have fever, etc. As my oncologist said when he called, I should be "sick as a dog."
What other explanation? Well, the pulmonologist suggested this might be infiltration of leukemia cells into my lungs -- not lung cancer, but cancer in my lungs. Oh goody. Also, perhaps it is a pneumonia infection and my compromised immune system refuses to mount an attack against it and therefore no symptoms of fever, coughing, etc. If you remember last year, I did have pneumonia without any symptoms and that one also showed up on a CT Scan as fluid in my lungs -- but not ground glass. Antibiotics and a couple of weeks later my lungs were clear again.
My type of Leukemia/Lymphoma is known for spawning other cancers and we have a greatly increased risk for lung cancer, whether one smoked or not, and I used to smoke. Lung cancer was my initial fear, but the pulmonologist really feels this is a remote possibility right now.
Well, we had to find out which of these alternatives is the culprit. So yesterday, Friday morning, under conscious sedation, (Cheryl says it was unconscious sedation) I had a flexible scope inserted through my nose and down into the bottom of my lungs.
We had to be at the hospital at 9 to fill out paperwork etc. I insisted on a blood test just to make sure my platelets were still up. Sure didn't want to bleed out on the table. Cheryl dubbed me "doctor Wagner" as I was explaining to my nurse as to why I wanted a CBC test first, just to be safe. Turns out they were fine at 107 (above 150 is normal, but not dangerous until below 50). I was hooked up with an IV in my hand because they didn't want to use my port as the nurse said that gives higher risk for infection. Not sure that is true, but I was in no position to argue. I was then taken into an operating room about 11 a.m. There were two nurses and a guy who was going to operate a fluoroscope machine, and my doctor. They hooked me up to oxygen and then the doc stuck two, maybe three, very, very, very long Q-tip sticks with lidocaine way up my nose till I thought they were going to come out the top of my head. Then he left them there as I tried to wipe away the tears without anyone noticing. Then he leaned over me and asked if I was getting sleepy yet. I said, "No, not at all" and that is the last I remember until I woke up at home in bed at 8 p.m.! Actually I remember a couple of little snippets -- at some point my chest hurting really bad and my throat was sore. Probably that was some point during the procedure as I imagine a tube down to the bottom of my lungs through my nose would hurt. Then I remember a quick scene of Cheryl driving her car up to the front door of the hospital to pick me up and that is it. Cheryl said she thought they sent me home way too soon as I was definitely out of it. She had to dress me and she said I didn't talk all the way home, just zonked out. Then she and Jimmy had to get me into the house. She said I flopped onto the bed stomach down with my legs hanging way off and she and Jimmy had to pull me up the rest of the way as I wouldn't move. I woke up at 8 p.m. and couldn't figure out why I was home. I had a bowl of soup, napped in my chair, finally went back to bed at 11 p.m. and slept until 9 this morning.
The doctor told Cheryl he saw just what he expected (not sure what that meant), collected some of the fluid that was collecting in the bottom of my lungs and took several lung tissue biopsies. I have an appointment to see him on September 2nd. He said he would call if he got any reports back, but it can take up to two weeks for the results of all the cultures and tests.
He also said he thought I had sleep apnea and wanted to send me to a sleep specialist. Well, I don't need another doctor and I don't have trouble sleeping. Apparently he said I would snore during the procedure and then semi-wake myself up snoring. I don't know how he could judge anything like that while I was under heavy drugs. I would think snoring with a tube through the nose and down into the lungs would wake a dead man up.
There are two other "fuzzy nodules" visible in my lungs on the scan that are in areas he wasn't able to get to or biopsy, so he will track those with further CT Scans every six months, looking for growth and or becoming more solid.
I am coughing today, but I guess that is because he stirred things up in there. No sore throat or pain, though. I'll let you all know when I get any results.
So, my schedule for the next two weeks: Travel to Houston tomorrow after church and get blood drawn at the hotel lab tomorrow afternoon. (The hotel is the Rotary House International which is part of MD Anderson complex.) MD Anderson appointment on Monday with my specialist, Dr. Wierda. Tuesday, Sept 2, back to see my pulmonologist and hopefully get some results. Wednesday, Sept 3, my local oncologist appointment and my day long IVIg infusion. If this is pneumonia, I will be a little surprised as these very expensive IVIg infusions are supposed to help protect me from infections.
As always, we covet your prayers for a good report and that it will be something easily cured.
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