DustyMark's Journey 3 Comments

We did got to the Surgical Center, which is like some small hidden office behind Walgreens on 36th street, and Mark had his CVC taken out. Its a pretty simple and quick procedure. They numb it like you would a tooth and then they pull it out! They had to unstick adhered skin/scarring to the “cuff” of the lumen (and that looks kind of awful because they are NOT careful….because he is numbed) and then its pulled out. Pressure is applied near the neck and at the hole for 15 minutes. Bandages are put on and we were out the door. It was weird for me. Like bitter sweet. To me, that was his life line. I needed that to clean his blood for him. It was my only access to be able to do that and I’m familiar with it. Once its out I am forced to use the fistula. There is no turning back and if something were to go wrong, there is no back up. So I was a little nervy about it but I am glad its out. I did hate this tube sticking out of his chest.

I attempted a nap but then UofM called which is fine because I have been wanting to talk to the Nurse Practioner about the tests. She is just really kind and explained to me that even though alot of little things are happening (which are huge to me) they don’t assess each one because it is common to see this type of mestatisis in this situation and they have to really look at the big picture and do what they can do to do the most “damage” to the largest area in the quickest amount of time. Which makes sense but no one ever says anything. Like empathize with us. “I know this looks bad, and its not good, but this is why we are doing what we are doing.” (or not doing what you think we should). She did tell me I had to make an appointment for his MRI total spine. See, I thought they would call ME. Ooops. She also said that the fluid in his abdomen, even though its not a huge amount, can be drained out and that might relieve alot of the gut pain he is having.

Wednesday morning we saw Dr. Denboer and that is always encouraging. They do inbody scans there and to my surprise…Mark’s numbers look good! Fat percentage is down of course but weight is up and muscle mass went up? Whatever, we will take it! He wants to focus on the liver and the gut. So we switched up some supplements to be able to really get the colon working how it should, and hopefully it will relieve pain and increase appetite. The liver is just overloaded. Not only is it processing chemo daily but there are lesions there and so its just not able to do its job and so we added something for this in the regiment to see if we can’t make some progress there. He said for sure to go get that paretenesis (??) done and get that fluid off. It puts strain on the gut, the chest (lungs) and the liver. He thinks with that done and with this new regiment, we can start to feel a bit better. The only other main issue Mark has right now is skin rashes that turn to sores in some spots. Ouch.

Wednesday was a home track meet. The opposing team was just so small that there weren’t many people to run against. Alot of the kids were able to run new events or events that they could get varsity letters in. Aly asked to run the hurdles…I told her she should. Its not like she has some great hurdling form because she doesn’t practice but she is conditioned to run so she did it. She ran a decent time too! At least the sun was shining. Thats a start. This spring weather is harsh this year. By the time we got home Mark was exhausted and so was I but I knew I needed to go for a walk and get my body moving. I had been driving all day back and forth (baby appointment too for Felicity). Mark laid down to take a nap and I set out for a quick short walk with intentions of being back for a visitor coming. It wasn’t anyone I knew but he had connections through aviation. His son knew Mark and he had been following the story. Through our dicussion I learned something (again!). That I’m a doer and so I’m always wondering what I should be doing. I often wonder what God will have me doing in the next phase of life. Perhaps God doesn’t want me to DO anything but to be still…and relish is who He is and really develop a deep relationship with Him. Wow. See, that seems really intimidating for me and doing is easier….but I do like challenges. Mark didn’t wake up and even though I offered to wake him, our kind visitor told me not to. He did leave us with a gift and then Mark felt really bad that he didn’t set an alarm or ask me to make sure he got up. He was just so tired and he was out like a light. I enjoyed our conversation and continued to be amazed at the heart of people. Even people we don’t know!! Wow. Just mind blowing.

The most exciting part of the update….TBC

Comments 3

  1. Dusty you are heaven sent for all you have done and all you do.
    Mark is very lucky to have the love he does in his life.
    He is going pull through all of this and make of us shake our heads and say HE IS A CHAMP. Keep posting pls!
    Much love

  2. Good afternoon Dusty. This is Todd “Buddy”Kwiatkowski. I am so sorry to hear about Mark. He was one of my college roommates along with Phil Stevens. Mark was such a great roommate to have in college. We had a lot of fun together. We played in several Mackers together as well. My prayers are with you and your family. Mark is a Man of God. Please let me know if there is anything that I can do to help. I talked to Phil yesterday.

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