Myelogram/CT scan

DustyMark's Journey Leave a Comment

Jan 31st

So it truly is like…February. How the heck does that happen??!!!

We had our Buick in the shop for over 2 weeks. Remember, some kid at the high school slammed into Cora driving my car and we finally got it into the shop. We drove it home Friday and parked it and then drove it one other place and heard a rattle in the back. We were 30 mins into our drive to Ann Arbor yesterday when I said to Mark “that rattle is going to drive me crazy!”. We didn’t know what is was or if we were going to lose a part on the highway or find ourselves sitting on the edge of it. We decided to be safer than sorry and asked the kids to gas up the truck and meet us on M37. 45 mins later we were back on track and on our way.

Dinner consisted of Miki Japanese at the hotel (it was less than a block away so I ran over and got take out) and some football. I didn’t sleep well again, because Mark didn’t and all I could think about was contacting Radiation Oncology and making sure I knew where to park so I got up at 6:45am

First Mark had to go to a Myelogram. This is where they inject dye into his spine so they can get very clear and precise pictures of his spine at the CT. I waited in the waiting room and finally started looking at dresses to wear at Karson’s wedding. It’s only 4 months away! I was reunited with Mark in a recovery room where he had to contine to be flat on his back and even declined so his head was lower than his feet because the dye is heavier than spinal fluid. Next he was off to the CT scan and this is where they do their “plan of action” for radiation. After that he got dressed and we were off to “pop in ” on Dr V the oncologist. Thats kind of funny. We checked in and waited over a 1/2 hr to be told we were on the schedule and would be called back. We finally made it to a room at 12:40 and told ourselves we would wait 20 mins and then were out of there. I did a preregistration call with the surgical center for the next day and then the doctor arrived (yes that is how long those calls take. Total ridicuousness to ask ones life history to make 2 very small incisions in ones arm while completely awake.) The meeting was quick. We talked new med, new immunotherapy, she looked at his back and then she was confused as to why we didn’t have the new chemo pill yet. I wanted to be sarcastic and asked how long it took her to get her latest. I think as a doctor you really don’t know what it’s like on the other end. Mark forgot his cane in the office (for the second time). This is good. It means he feels stable and doesn’t need it.

When we were in the appointment the Nurse Practioner for Dr Evans (radiation oncology) called to talk to us but we couldn’t talk. When she called back I was in the truck going to pick Mark up in the lobby so she said she would go down there. When I pulled up to the Cancer Center Mark was waiting outside so I told him to quickly get in so I could get him to the doors. I could literally see her looking for Mark. Well, if you have been around Mark lately…he isn’t moving quite as fast as he was on the bball court a few shorts months ago. After he got in I pulled up but there was a car in the pull around so I pulled a Jason Bourne and went over the curb and pulled in hot. I had to tap my horn because she had gone back inside. We were successful in getting her attention. Now this is my kind of practioner. She was chasing Mark around the hospital so she could talk to him in person. She didn’t need him to check in..she didn’t need him to “pop in”, she went and found him because she felt it was important to speak to him in person and explain the next step and why they may or may not radiate in the hips. She said there wasn’t significant amounts of lesion/tumor in the hip area and that maybe they would let the immunotherapy take care of it and if it doesn’t then we can get radiation later. I understand what she is saying but also we both are like “take care of all of it now!” So she told us she would look close again at the CT and decide.

Lunch was a the Plate a couple miles from the hospital. Its new and we like the asian lady that owns/works there. She was so nice and knew we had a long drive back and would be eating in the car so she made sure I had plenty of napkins and supplied me with water bottles. She was being very sweet and mom like. We scuttled toward Grand Rapids with a gas stop and then got to the Davita office right at 4pm for his neuphrologist appointment. Dr Banga has always been really aggressive in Marks care. We like him. It was a fairly uneventful meeting but he gave Mark tips on how to get more fluid off and be more comfortable with the fluid on his legs. He also prescribed a med for him to take 30 mins before dialysis to help keep his BP from going to low. Its funny….Marks pressure was always great and normal. Then all this and it was high. It slowly went back to normal after things settled down and he was urinating….now its lower than normal and when he is dialyzing, it drops a bit lower still. We don’t want another pill but decided we should try it so we can keep taking fluid off.

In order to make everything happen today (Tuesday) I got up at 5:45am (made a SAK last night) and got his machine started, coffee started and got Mark up. I was hoping to get him running by 6:30 and I was successful. We were taking 3L off again and even though we did the new med…his pressure dropped the lowest I have seen it and so we had to stop taking fluid off but other than that, the session was seamless. I forgot it takes like 20 mins to get off and clean up so we were running late to his fistula appointement which was way south of GR. It was a really nice surgical center. Not too eventful and really nice staff. His procedure was pretty quick and his fistula should get better faster now. The Dr took out his staples as well (the 6 he had left) and we were on our way back home with a quick Aldi stop for paper goods and a few other items.

When we got home we were greeted by a box of frozen (fresh) Alaskan salmon from one of Mark’s friends in Alaska. Mark is super excited to smoke it and eat it!

Yesterday I was able to speak to the specialty pharmacy on the way home and Mark’s new chemo pill is being delivered tomorrow. So even though Monday was crazy….with people like Jenny the NP, the asian resturant lady and getting the med delivered, it felt successful. Getting the fistula fixed also felt like we were putting pieces of a puzzle in place and maybe we could start moving forward to try to gain back ground we have lost.

Next: radiation.

The Monday appointments have been cancelled because she wants to wait til after radiation to restart immunotherapy. I’m not going to complain about NOT having to drive to Ann Arbor again. 🙂

Mark did start to write today…hopefully he will come up with something soon for you all.

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