Job 30:17

DustyMark's Journey 10 Comments

“The night racks my bones, and the pain that gnaws me takes no rest.”

Jan 17th

Its been a very rough 3 days for Mark. Its been rough for us too despite how I might appear. I am trying to get task done and keep busy….If I wait by the phone for a phone call telling me I can come to UofM…I’ll just waste time and go mad.

Without all the details (because I don’t have them all) I will just try to update you on how Mark is doing. I was able to talk to him Saturday but not for long…his blood pressure was acting up and there was alot of beeping and nurses so he hung up. I think I talked to him later as well but I did speak to the nurse who was attending him and she asked the nurse practicioner to call me and suprisingly, she did. Exactly about the time I was on 94 looking for my exit to go into the city to get to Moody. With speakerphone and a map, I was able to handle it. I felt like I was firm with her on needing to be informed and communicated with. She gave me the low down on Mark and said they switched him over to a pain pump that he could hit every 8 minutes and that seemed to get his pain under control. I think I talked to him again but can’t remember. He can’t hold a conversation for long and his phone was blowing up with texts. I told him to ignore them. Sunday I missed a call from him when I was driving to church. I called him back and he said he has gained 16 pounds of fluid and wasn’t urinating anymore. He can’t sleep because the pain is too much. The pain in his gut is awful as well and his kidney really hurts. He asked me to contact his oncologist.

Today I tried to get in touch with the case manager for him and the nurse didn’t really want to share that information and then said she would have them contact me. They did not. I also tried to contact his PCP because I had some questions but I guess today is a holiday. I just recently talked to the NP again and she informed me that the pain does NOT seem to be under control and that they will get him on Ketamine which is a super strong pain med that has to be administered and controlled by an anesthesiologist. There are some possible negative side affects but if any of those happen then they can take him off. Surgery comes with so many sides affects. Not only pain… but there is stress to the body and it always takes its toll on the systems and sometimes they are slow to get back on track. This always happens to Mark as well. His digestive track is not picking up the pace and so that is causing alot of pain but they, thankfully, are not waiting for him to be in the hospital for 2 weeks before they get on top of this. He has had several enemas with little result but some is better than none. His body is now retaining fluid (16 pounds plus) because his body is not urinating. They tried to explain to me that its normal for dialysis patients…blah blah blah…I was quick to tell them that his body doesn’t work that way. He urinates and we don’t take off any fluid when he dialyzes. When I talk to them yesterday she said she forgot to ask Mark how much he usually pees so I told her and she was very surprised. So what she thought was good….really isn’t. He is walking for rehab and to get the bowels moving.

So that’s it. He really can’t hold a conversation with me…I’ve barely talked to him. He says he hates it. He hates the way he feels and the pain. I can’t read to him….play music for him…rub digize on his belly….pray with him…nothing. Because I’m not there. Yesterday I was all worked up in the car and my stomach was in knots you know…but then I realized I was focusing on me. How I felt, how I was going to handle things etc…and that I needed to focus on Mark and the knots went away.

He is highly discouraged you guys. Highly.

They are suppose to start him on a new chemo pill soon, only to stop it again for radiation in 3-4 weeks (3 sessions to be completed in one week) and then he can go back on it. He still has a fistula fix scheduled for Feb 1st and it is my hope he can still do that, work the fistula, get it trained (and us trained) and then get his CVC (port in the chest out) before March. I don’t know if I am being hopeful or not. We will take it one step at a time and then if he can, we would like to get to a warmer climate for a little bit for a handful of reasons.

I have NO idea when they will discharge him. This pain has set him back as far as recovery and discharge. Of course I do not want to hurry him home until all pain is managed and his body is ready but I do want him home. Its also scary to me. Will he be able to walk up the stairs to the house? Will he be able to do dialysis downstairs or do we need to move the machine? Will I be able to take care of what he needs?

Pray for good communication between me and hospital.

Pray for pain managment and for it to get better. I don’t know how much more he can take.

Pray that I can get in there or that he can come home soon.

Pray for urination and bowel movements.

Pray for no more complications!! No new procedures.

Pray for my kids.

We took Cora to Moody and dropped her off. We spent a little time there but then headed back. It was easier to leave her this time. She was not as emotional and she has good friends there now.

Here is a photo of Mark’s back. That drain tube has to also come out before he can go home. Sorry if it grosses you out.

Next are some photos from dropping Cora off. I always joke that if I took a photo of the moon it would look stupid but when she does it, it seems to look awesome.

Romans 8:18 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

Comments 10

  1. Thank you Dusty for the pics of dropping Cora off and of Mark’s incision. It actually looks good but they really made a large incision. Praying that his pain subsides and he urinates and his bowel begins to work so they don’t have to do any more procedures. Narcotics do good but also bad things to the body. His body needs a rest, In Jesus Name!! Carol

  2. We are praying for you, Mark, and the kids. We can not even imagine what your family is going through. Our family is going through Glenns kidney failure, however he doesn’t have cancer, or had any operations. He is just on dialysis 3 times a week, which still is a struggle with the other issues he has with blood clots and his lupus. He just started this week not being able to urinate, which he was told also it is from the dialysis. Glenn is retaining fluid and has to have fluid taken off everyday before his treatment. I am so thankful for your updates they help me to not focus on what I’m going through, but to see it from Glenns view. We love, support, and pray for you all. Lots of (((((HUGS)))))…♥️♥️♥️♥️

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