On December 13th and 14th of 2016, I had my two year stem cell transplant follow up appointment. It was intended to be one long day of testing on December 14th where the evening ending off with a visit with the oncologist to discuss all the findings.
I wanted to change this schedule a bit despite UT Southwestern’s groans to the contrary. They actually pushed back a bit over the phone stating it is hard to reschedule so many tests. I can respect that. I wanted to attend a meeting at work that was important for me on the 14th and told them to figure out what they could do. I held firm. They managed to do half of the testing between 7am and noon on the 13th and then 2-5 pm on the 14th.
My day started as usual: finding parking. I kept my parking ticket stub as UT Southwestern will only make you pay once a day for parking and I was going to several locations.
I started with a pulmonary function test on the morning of the 13th. I’m glad they did it then. I had started coming down with a lung infection the day prior.
Confusion reigned on the first location. They were moving in that very morning to a newly rebuilt location in an old building. No signs except the one above were visible. Elevators were working intermittently. I caught one on the way up, feeling fortunate to have got it.
I was a bit lost in the whole deal honestly. The information desk said to go up to the second floor and take a right as you come out of the elevators. There are elevators on both sides of the hallway facing each other. Which was “to the right?” That could vary depending on which one they meant you were coming out of. I starting opening doors randomly, walking around, and no one knew much of anything at that point. I eventually wound up in a lobby behind an unmarked door with a lady who apologized. She said they were moving that morning and it was chaos.
The first test was for lung function. I found that ironic considering I seemed to be coming down with lung junk. The PFT, or pulmonary function test, isn’t too bad a deal. They make one sit in a glass box that seals shut tightly. I have to puff in and out in a rhythmic pattern into a breathing device.
It is a bizarre test to be honest. The other half of the test involves breathing in certain gases and then the machine checks to see if my lungs are actually moving the gases into my body sufficiently or not.
When I was through with that, I found the stairs and went down to the first floor. I overhead a security desk tell an elderly couple their cardiology appointment was on the 9th floor and they would have to take the stairs. Nine floors worth of stairs for an elderly couple and one of them was clearly ill. The fella with the oxygen tubing stood there speechless. How was he to manage 9 flights of stairs? I walked on, not sure how this day would turn out for them.
I walked a ways to the second building. I didn’t get lost despite it being located across ‘the campus.’ That was a bone density scan. I had the pleasure of enjoying laying in odd positions while they scanned various bones to see if I had lost any bone density. Then I had to get in my car to drive to the next building for my next test. I have no choice but to use Valet parking at this location, they offer no other option.
The final test for today is rather a complicated test called a PET scan. It tests for the presence of tumor activity. That is always a joy. Got undressed and put on their paper gown. Then they started an IV, I received an injection of radioactive sugar (serious), drink this nasty liquid, and then lie still for one hour. Thereafter I walk across the hall and lie still under the machine for another 20 minutes while it checks to see if there is any hyper metabolic activity (tumors!) growing.
Altogether, it took 1/2 day to complete those three tests. My next event had a moment of friction. I went to retrieve my car from valet as I have done for over 2 years at this exact location. A new employee was working behind the desk. I have seen few people so clearly unhappy, she was literally frowning. No hello, goodbye, kiss my grits or anything, just takes the ticket and states “that will be $20.” I said, “nope, been doing this 2 years and I know the rules, once I pay somewhere on campus once a day, I don’t have to pay a second time that same day.” You wouldn’t believe how rude she was, it was quite the scene she created. I said only that one sentence, never said another word, and she was so grumpy. The security or manager dude apologized and told me to proceed.
I was done after that. Since I was in the neighborhood, hit my favorite burger shop: Maple and Motor. Yummy. Can’t beat their bacon jalapeño cheeseburger.
Then I went home and rested. The next day I made my meeting and then drove back to UT Southwestern for lab testing and then to meet with the oncologist. I first made the obligatory climb up “the stairs.” Won’t be denied that if I can help it!
They then managed to milk my body for a 55 gallon drum full of blood, testing me for everything and nothing. Then I waited. This is where it gets interesting.
I sat in the small oncology office waiting for the oncologist to come in. I have done this a lot since I was diagnosed with Burkitt’s Lymphoma the first time in 2008.
I can read their mood based on their entry and introduction into the room.
Today’s entry wasn’t good.
Instead of going directly to the computer to pull up results, he pulls up a chair and sits down looking directly at me. Then I realized he had nothing in his hands and he was resting his elbows in a compassionate way on his knees, eye level with me.
He didn’t say a word for a brief moment. An awkward silence filled the room. The position of empathy with a pause is a direct signal to take a deep breath and hang on.
He asked me how I doing. I shared that I was coming down with some kind of lung junk the last 24 hours, my nose was congested, coughing a bit, and otherwise ok. He said “we need to talk, your PET scan lit up with a possible tumor in your neck.”
You know, I’ve been through this twice now, once in 2008 and again in 2014. Nothing can prepare one for such news. I don’t care who you are and how ready you may think you are. I was caught off guard and the oxygen left the room. Time seems to stand still in such moments and the immediate sense of heightened everything is overwhelming.
He said the PET scan showed an area on my neck of hyper metabolic activity. The rate of uptake was a 4.5. As a comparison, the uptake of my tumor (seen in the pic below) was in the double digits.
He asked if he could biopsy it.
I stared at him and felt my blood draining away honestly. With only a moments pause to make sure I wasn’t going to get emotional, I said to the effect my position hasn’t changed on this topic. If my cancer returns, I’ll go straight into hospice. I don’t have another battle in me. This last battle lasted 15 months and sucked me dry. We had already had “the talk” and he knew my position. He again confirmed I would choose hospice and not any form of treatment.
He said he understood. Then he shared that the radiologist and he honestly had already decided it was probably more likely a lymph node doing its job. He said “I’m honestly glad to see you are sick, fits with the PET scan picture, although it could be the very start of a tumor. We won’t actually know unless we biopsy the tissue.”
These oncologists are good at just saying it like it is. He said the truth is, if it is my cancer coming back, we’ll know in about 14 days as the knot in my neck will balloon outward quickly, just like it did in July 2014. Below are two pictures, the first being the night I discovered the tumor, then 25 days later.
The first pic above was taken June 7th, 2014. Twenty five days later, you can see the size of the tumor on July 2nd, 2014 as I was preparing to enter for my first round of chemo. Burkitt’s lymphoma is the world’s fastest growing cancer and we both knew if I had Burkitt’s, it would be over with on a short order.
I walked down “the stairs” and the same grumpy lady was behind the desk. Her frown from a distance was clear and unmistakable. I was in no mood to tangle with her and found my wallet, prepared to pay the fee. Today she didn’t try to charge me and I was nice to her. She treated me the same as she did the day before. She clearly is not a people person.
I went home in a deep funk, needless to say. I was not in the mood for my normal hamburger stop. I shared with my wife and a few tears flowed. My wife and I decided to not really tell anyone else. I know mom might be mad (sorry mom!) but I didn’t see any reason to make people share the angst my wife and I were walking through.
I kept going forward, worked as usual, but it was not easy. I was pondering bucket list activities just in case. I rehashed several thoughts I have chewed over before, such as “what is the meaning of life,” “how to make every moment count,” “what is the most important thing for that one moment,” and other such depth of meaning topics.
It was a mind game and an emotional time for me. Insult seemed to add to injury. My six year old laptop then died on me. I ended up dealing with something difficult for me that I won’t otherwise share, but it was hard. I took antibiotics for 10 days to fight the growing lung infection. Scheduled an appointment for a hearing test, which will be on January 20th, as I have come to the conclusion I very well might have hearing problems. I shaved off my beard so I could watch my neck really closely. Despite such potentially heavy news, life goes on. I didn’t totally fall apart, but had some somber moments and emotional ones for sure.
Christmas was ok for me. I am alive and no knot appeared on my neck! I’ve slowly started sharing with one person here and there what happened. I didn’t choose to go public with this ordeal for a while or share it with many as I am honestly tired of the whole thing. I guess it is my burden to carry now.
I woke up Tuesday January 10th not feeling well. Got weak, couldn’t seem to quit coughing up nasty stuff. I have been in the hospital before for pneumonia and know it can take me down if I don’t act on it. Off to Carenow I went and they did an x-ray and blood tests. The x-ray confirmed fluid in the right lung and that both lungs ‘were really nasty’ according to the doctor. She did say I have pneumonia and the race is on to keep me from going into the hospital.
I endured my second most painful injection ever. I didn’t realize Rocephin IM hurt like that. I nearly saw stars. But it doesn’t hurt as bad as Phenergan; that still takes the cake for supremely painful shot. I was given Ampicillin to take 3 times a day for 10 days and a z-pack to munch on. Joy! I promptly went home and laid on the couch all night.
In the dark.
Just laid there.
Maybe that is just what I needed to do. I had *zero* energy and was wiped. I concluded my cancer is not back right now but I do have pneumonia.
It is now Thursday night and I’m feeling a touch better. The lungs have slowed down the production of yucky green stuff, the neck still has no visible knot. Life must go on.
I feel I have just dodged a bullet this last few weeks and am grateful to be able to write on my blog that all is going to return to normal. Thank you Lord!