Back up the boat…I got a bit behind

DustyMark's Journey

October 9, 2021

It’s been over 2 months since this all started. August 5th we went to the ER the first time. Monday October 4th was the first treatment for his cancer. August 19th he went on dialysis. Next Friday, October 15th he gets his fistula and I’ll explain that later.

Today was the Portage Invitational. This cross country invite is huge and really fun to go to so it felt a bit sad to me that I had to go alone…yell alone…and didn’t have Mark to tag team at various spots to cheer the kids on. I saw some kids cutting through a baracade and then jumping the fence…and I thought to myself…”Mark totally would have done that” (but he jumps higher) :). I did run into a high school friend (christina H.) though and that was fun. Of course, and you know this is true, that always happens when you wake up late and do not have time to get ready fully and you look a bit like a hot mess. Every stinking time.

I think this season is extremely hard on Aly to not have her dad there. I think its really hard for him to not be there.

So…lets go back a few days. Monday was UofM and Tuesday was not very exciting (oh except for a super long day and not getting to my kids meet in time to see the full race). Wednesday I was suppose to make a Pak, actually Tuesday I was suppose to. I could not find ONE faucet in my house that would attach to the water line from my cycler and PureFLow. I went to bed tired and defeated and slightly embarrassed that I had to tell our nurse I did not complete my homework. I think that was also the day I had my pity party and I just did not want to have this machine hooked up in my home. I did not want to have to do this. Mark talked to a friend and he said he would help us hook water up in the office so we wouldn’t have to have tubes across the house. He showed up with a friend (both friends from church) and our plumbing fairies, the dynamic duo, worked on it until 11:30pm and when they left I had a water line and a drain line in my office. Sadly, I also had a chipped filter so when we turned the new water line on…it leaked all over the floor. Once, again. I could not prime a Pak.

Thursday was our first day of at home dialysis and since you have two options to run the machine, we could still carry on. We would hang 8 dialisate bags. ( I have no idea if I”m spelling these things right) On Thursday afternoon our home nurse came to the house to program our machine and to be there for our first day on our own. It was a bit…sloppy. Everything was still in boxes, we had to move the recliner…the light over the machine left much to be desired and right away we foudn out our machine didn’t alarm. It was working fine…but if there was an alarm, a sound wouldn’t be made. Thats not safe so we finished the session but had to get a replacement machine for next time. We successfully primed a Pak but when we went to make a Sak (of dialisate) the machine yelled at us. It was an alarm (this is the pureflow, it alarms) that the company was not even familiar with so…we also needed a new PureFlow computer. That means we could not make a Sak and the Pak we primed is not good and it all needs to happen again. Sigh.

On good note, it was good to not have to drive to Grand Rapids and to not have to drive back. Mark was especally cold during this home dialysis session and afterward and into the evening…he wasn’t “feeling too hot”. He did have a fever at night and we were just told this week that dialysis patients get like 2 degrees above normal before people freak out because the chance of a blood infection is high. We waited it out and by morning it was back to normal.

We have been doing several things in hopes of getting his GI back on track. We have been using a natural powder called Enodefen 3x a day (but he says it upsets his stomach) and we also started Castor oil pack on his lower GI. He has one new medication that is suppose to block opiods from his gut and he started that on Tuesday but by Tuesday night he didn’t feel awesome and starting vomitting. After that he spent several hours off and on the toilet. As excruciating and non pleasant as this was…his body was moving some things on its own. Not well, but moving and so we know that all the things (not sure which one in particular) are working and we need to keep going. One of the other things we do once a week is colon hydrotherapy. This is about an hour session where warm water can be slowly released into the colon (over and over again) to help move toxins (and poop) out of the system. Without this Mark would have fecal matter in him from the beginning of August. Its not pleasant but its helpful and important. Plus our therapist is great. This same day (Tuesday) he did get a chiropractic adjustment that he felt movement in so it could have been that as well

Okay fun story: I had someone reach out to me via Facebook. He said he had recently been told about Mark and that he had lots of friends and family in Kent City. He told us he also had cancer and that he recently had been put on dialysis and was also training for at-home. In fact, he was sure that we were training at the same center with the same nurse in an adjoining room. He is at the beginning of training and wondered how it was going for us. He is also a patient at UofM. Then his sister reached out to me and evidently she sees me at cross country meets! It was really nice to connect with people who are going through the same thing at the same time and connected to our community. I feel like its going to be one of those fun side stories God places in the big story. I’m curious to see where it leads.

We had a snafu with the oral chemo pill (Lenvima). I had been chatting with the UofM gal and she called me on Friday to tell me that it has to be re-appealed as it was denied. A few phones calls were made in the afternoon and it was pushed through. It truly is in who you know AND being on top of the phone calls and being proactive. Unfortunately, it will take several days to land at my door but it is coming. The immunotherapy works WITH the we want the Lenvima asap.

Mark craves spicy food so as soon as I’m done typing this I will go make him something with spice. We find soup is best for him to digest right now and then we try to get some really dense things in like fat bombs and shakeology. We NEED his GI to get better!!

My project this weekend (besides getting supplies etc set up for Newaygo house) is to get the office set up for smooth dialysis. Organized well enough so I can just do dilaysis like I learned how. When it gets crazy and you can’t find stuff you can miss important steps.

Photos: Mark at his first at-home (in his tortilla shell blanket), stretching on ice packs (with Bucky) and Aly with their 3rd place team trophy and her top 30 medal.

God is still good.