Moments Of Beauty

 

On a recent Friday my wife and I went to Brigham & Women’s Hospital for a follow up visit with my doc at the pulmonary clinic. Many of the patients are older and not always in great shape. While I was in line to check in at the waiting room, an older fellow eased his way in, moving slowly. Thin, casually dressed, good hat. He looked at me and I said, “Good morning, how are you today?” He smiled and we had a short conversation. He told me why he was there and I was amazed that that man is still alive. I said, “Well, it's not over, is it?” He replied, “I’ll never give up.” I was called in first and as I was leaving the waiting room he said, with a great smile, “Good luck to you buddy.” I said, “You too man.” I’ve noticed that guys like us know each other without knowing each other. B&W is a busy hospital. The halls are crowded with people, and then you see a guy and you know. There is eye contact, a nod or a word. It is such a wonderful moment. Good will between strangers, acknowledgement, a soul bump. I hope they feel it too.

As we left the hospital and navigated our way through the underground garage, we heard a man singing. Sabine recognized the melody and started to whistle. They harmonized their way through the song. Music is the universal language.   

 

Narrowing Down The Focus To The Spleen

 

A lot of test results came in this week, including analysis of the pleural effusion fluid that was drained from my chest cavity and a careful review of a full body PET/CT. I discussed all of this with my doctor yesterday.

1.    The pleural effusion in my left lung showed signs of mesothelioma cells. My doctor, one of the top mesothelioma doctors in the world, did not show great concern. In all of the recent imaging, there is no sign of disease spread. At this time there is nothing to treat, no lesions or nodules, so the strategy is ongoing surveillance. He also assured me that there are ways to treat any emergence of mesothelioma if caught early without damaging the actual lung. Phew, that’s a big load off my mind.

2.   The right lung is stable. For several years there has been a small pleural effusion and it has now cleared on its own.

3.   With the exception of the spleen, my abdomen is clear of anything that looks remotely cancerous; liver, pancreas, kidneys; all clear. This too is another big load off my mind.

4.   The question now is: What’s going on with the spleen? My doctor has never seen anything like this. His dedicated radiology team cannot come to a conclusion. Lesions of the spleen are “not favored” for mesothelioma, prostate cancer, or lymphoma, given the data that we now have. Nonetheless, due to my BAP1 mutation I am more likely to develop new cancers than the average person. My doctor is a logical thinker and troubleshooter, just like I am. He said that he can’t move forward with 80% confidence, he needs 100% confidence or as close to that as he can get. I agree. So the next step is a biopsy of the spleen. It’s an outpatient procedure and I expect that it will be scheduled very soon.

There is a hodgepodge of other things. I’m mildly anemic due to low hemoglobin, low hematocrit, and low iron. I’m on an iron supplement, and the blood metrics should sort themselves out now that I’ve stopped taking the prostate cancer drug. I’ve lost some weight, mostly muscle, and some appetite. Now suddenly I have the appetite of a horse. We’ll see if this lasts. I still have some dizzy moments that force me to sit down. No explanation for that.

After visiting the doctor yesterday, I came home and had a huge lunch. An hour later I went out for a short bike ride. Unlike other recent rides, it did not destroy me and I was up and moving around doing useful things after a short rest (the kind of rest that every cyclist takes after a ride). Then I ate a huge meal and collapsed in front the TV for a Netflix session.

So here I am, possibly bottomed out and on the road to improvement, but still with a mysterious spleen issue. The spleen problem can range from deadly to benign, so I am seriously looking forward to the biopsy. The prostate cancer problem is on the back burner for now. One last note; I could add a lot more detail and technical information. It would make this post really long, but if anyone has questions and wants to reach out to me, I’ll do my best to answer those questions.