Tomorrow, God willing and no set-backs, I leave this hospital. However, it will be a very busy day. I must get one more 3- hour plasmapheresis session (to remove the bad cancer plasma), then receive my next chemo treatment, then race to Oak Harbor to register at their dialysis center before they close at 4 PM. If I don’t make the 4 PM deadline, I can’t get my dialysis on Saturday because they only register patients on week days.
It will be glorious, leaving the hospital. I can’t imagine. It is so exotic to me that it seems like going to walk on Mars.
I was thinking today how wonderful I would feel if I had just beat some god-awful disease, say bacterial meningitis, where I almost died and now am better. I would go out and dance all the way home like Gene Kelley in Singing in the Rain. However, it is different. I am thrilled and deeply thankful that I just beat, step 1, of a horrible disease. I did come out a live, which we had serious doubts I would at times. I am elated about that as I didn’t think I would ever sleep in my own bed. Sit with my own wife and breathe fresh air again.
Not to mix metaphors (I started this with putting on one crampon, as to climb Mount Everest), it is also like surviving the worst hell you have ever imagined, and as you are trying to stand up, you must now march into the Normandy Invasion (looking at what is ahead). It is daunting. It is helpful that I know I will not take this journey alone.
We are still praying for my kidneys to return (I would love to get this catheter out of my vena cava, through which they circulate my blood through these different machines). As I’ve said before, my kidneys are making lots of urine, but not doing a good job of filtering yer. The good news is that I went two days without dialysis (Monday and Tuesday) and during that time, my creatinine (one of the toxins the kidneys remove) stayed stable and my potassium went down. So, it is only a matter of them working better and not being damaged anymore by the cancer.
I am happy to report that Denise has now gotten some sleep. Of course, she is overwhelmed with exhaustion, but not as acutely as before. I want to focus on keeping her healthy in all areas of her being. I can’t imagine how hard this is on her. I want to do my best to not lean too hard on her.
We have a very busy schedule this coming week between running to Bellingham for one more plasmapheresis session, three times to Oak Harbor for 3-4 hour dialysis sessions, two trips into Anacortes for chemo. We see two days off over the next week for rest.
The Minnesota kids went home today. My daughter and two sons are still around for a few more days (one son lives here).
How do I feel?
I’m asked that a lot. I’m not in pain, except for soreness around the catheter in my chest. I am weak, with red blood cells about 3/4 of what they should be. Otherwise, I feel almost normal.
Today, Denise and I watched as the “System” in Health Care System became a bit dysfunctional. I will not expound on that, but it was a frustrating day and we have quickly realized that we will have to take be the captain of our own ships or we will fall through the cracks of the system and the “system” won’t care. If we were dealing with poison ivy, it would have been funny. But when you are dealing with cancer, you can’t miss treatments due to data entry errors or meaningless processing rules and miscommunications.
As a medical provider, being a sick person for the first time in my life (save the flu) I have learned a lot. I’ve witnessed a broad spectrum of professionals, from the superb to the wanting. I believe that you can teach almost anyone (with a little sense) to be a medical care provider. However, you can’t teach a medical care provider to “care.” They either have it or they don’t. If they don’t, they go through the motions to create data points and to get a paycheck. If they have it (real caring), you, as a patient, can feel it.
J. Michael Jones 
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