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 
8 responses to “UPDATE: Discharge?”
Wow, that’s a busy week, but freedom to smell the great Pacific Northwest air again!! Praying all will go smoothly for you and you will feel and know many many people do care, love and support you thru this trial. Many hills to climb but you can do it Mike, one step at a time. Greater is He that is in you than he that is in the world!🙏🙏💕
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That last paragraph hits home and is very well said! We experienced the same feeling when Jeff was in the hospital. Discharge is a fantastic end (?) to this story…maybe not ‘end’ (because your ‘new normal’ is about to begin) but a fantastic continuation of what started a week or so ago! Enjoy discharge day…it will prove to be the most frustrating day of red tape yet! 😉 Praying it will go smooth and you will soon taste the fresh air and feel the sun kissing your cheeks!
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Yes, leaving the hospital can feel ‘glorious and exotic’ after such a long stay filled with the intensity of treatments and emotion. I love your honesty…blogging in that sense is a good thing–keep blogging as you are able. It has helped me to understand you and the road on which you have suddenly found yourself, Johnny (and Denise). One more thing…I totally agree that you personally must take on the management og your own health care. The system indeed will only do so much of that.
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Love keeping up with this through your own words. I can not imagine what it is like, but I feel you are strong enough to fight this. God has a way of seeing us through our trials. I love you, just as I do all the kids honour street. We were like a family, and of course your mom got the brunt of our mischief because she welcomed us all. She even let us use you as our own live baby doll.😁 I will continue to keep you in my heart and prayers.
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Mike, I have been thinking of you since you’ve been admitted to the hospital. Sending positive vibes and prayers your way. I hope for a smooth transition for you this upcoming week. Being home will be a nice change of pace for you. And I know your dog must be missing you immensely! If you need anything, please don’t hesitate to ask. We are hear for you 🙂
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Mike, your Sisters are thinking of you every moment of every day. Your Aunt Helen had a good cry about you being sick but then we prayed and ask the Lord and Mom to help you through this. Thankfully, I guess that Helen has short term memory loss so she isn’t constantly worrying about you but then again every time she hears me talking about you to Sandy she goes through the pain of finding out for the first time again. She has been on antibiotics for a UTI this week and that has made her mental state a little less predictively. Otherwise she’s doing great and we say a prayer for you every night when I put her to bed as I put Moms last jar of ponds face cream on her face. It’s funny how something so benign can bring such emotion. I touch where Moms fingers were and know she’s still here forever in our hearts and always on our minds. And she is your guardian angel. I pray for strength for you and especially Denise and the rest of our family. We are here for you whenever you need us. Julie has offered to come stay with Helen and Alan’s Dad so I can come and see you. I told her I would wait until you get through some of your immediate treatments but if Denise needs some help, I can drop everything and come out and help on a moments notice. We love you and miss you and are praying harder and more than we have ever prayed in our lives for our baby brothers’ successful fight against this disease. If Love could make it happen, you would be dancing and signing in the rain every moment of every day! Love, your Sis
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Mike, when I read about you having cold sores from the chemo I wanted to call you immediately. When my sister Linda received chemo she also got sores in her mouth. Thankfully someone told her to eat popsicles while the chemo is being given. It was a great relief and the sores went away. Maybe you already knew this but a reminder never hurts.:) Prayers continue and so glad you get to go home. Luann
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You have a lot of work ahead of you but there is nothing like being in your own environment with a bed and a dock where you can enjoy the soothing lapping of the blue water. I am proud of you and your fighting spirit which is making this possible. We look forward to you and Denise joining your church family in worship and prayer.
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