Podcasts, Junk Removal and Uncertainties.

DustyMark's Journey 5 Comments

April 4th

I think its my dads birthday. I can never remember if its the 4th or 5th. There was a gal I went to school with, her name was Tyana. Her birthday is the 5th. It has alwasy messed me up since 2nd grade. Crazy…I know. He is 79 years old. Its weird to have your parents age into the 70’s and almost 80’s because that was my grandma’s age. They can’t possibly be that old. I can’t possibly be past 28 myself…right?

I met a gal named Luna through some group I’m a part of on Facebook. I read her comment about her husband being on dialysis and so I decided to be that crazy person and reach out. We chatted for a while Saturday night. Her husband lost kidney function at age 34!!! due to PKD, a genetic kidney disorder. She had been doing dialysis at home with him for 10 years!! I cannot believe it. That is so long and I thought Mark told me people can’t stay on dialysis for that long but I guess they can because he has. It was good to connect with someone that understand your language and who is also a caregiver. I’m sure we will keep in touch.

Lets see where did we leave off……the oncologist contacted Mark per my request except I requested she look at the MRI and go over it with us but she just told Mark to take it easy on his left arm and asked if he wanted to radiate the found mass on his shoulder. He told her he thought she should probably tell him if he should. (sometimes its so backwards) He asked what would happen if he didn’t and she said it would continue to deteriorate the bone and he would lose the usage of that arm. So yes. Yes, we want to do radiation. I had already reached out to Metro Health to the same office we went to for the last referral and made an appointment for this coming Thursday so she can not only look at the shoulder MRI but the upcoming hip and brain as well. A couple days later UofM called to schedule Mark there and I told them, no worries, I took care of it already. Its what you have to do. I have a huge concern that something will go wrong with that arm and if it breaks or something like that…then we have an issue because thats the fistula arm. If you think about it…you can understand why thats a concern. So I’ve been feeling VERY anxious and it makes me snappy and grouchy. It also makes me want to eat all the sugar and chocolate. Our bodies are weird.

This weekend I gathered my brothers and another close friend as well as Karson and we put up a wall in our garage to seperate the garage space from not garage space. It took all day to put this wall up. I was hoping the the whole space would get framed out but that was me being unrealistic…again. Its a metal garage so you have wood to metal and there are angles and the guys are all amatures. BUT we got started, I’m grateful and we did get some junk pulled out and disposed of but there is a long way to go. Can I just lead you all in a lesson here? Just becuase you have the space does not mean you need to fill it. Just because you CAN keep things doesn’t mean you should. Don’t be the typical American and buy buy buy junk or things you really don’t need. Periodically go through your house and get rid of unwanted and unneeded items. Always know exactly what you have where. Its so good for you mental health to see the space you own and to have eyes on all items. If its buried…you don’t need it. I’ve been purging for over a year and I still feel overwhelmed. I hope to go gung ho here this month (come on dry weather and sunshine) and then have a killer FREE SALE for whatever is left! I need the brain space as much as I need to see my garage and house space clear and free of clutter and junk.

Sunday Mark was determined to go to church. It made me anxious. (are we seeing a pattern here?) We did pile into the car and go together…a little late on purpose and then we left early so Mark could easily navigate out of the building and to the car. He felt bad because our church family has been awesome to us and he knows many of them would have liked to have said hi or chatted but we all agreed that might turn into too much and so we slid out like thieves in the night. We hope to continue to go and maybe once our faces are a normal a sight again it will be easier to leave and come at normal times. Afterward, Karson helped up record or first podcast. It was fun but a little long. I personally won’t listen to anyting longer than 45 minutes so I won’t assume other will either but some people perfer to listen than to sit down and read so mayb we can meet all those needs. Hopefully that will be up this week and we need ALL the feedback so we can keep doing it better.

I found myself especially up in arms this morning…I knew I needed to get up but once I realized it was spring break…I wanted to sleep. I used to be such a morning person and now I just want to sleep. I used to say “I’ll sleep when I’m dead” but I want to sleep now! I dragged myself out of bed and today was the day I had to collect water samples, sak samples and blood samples. I also need to collect urine samples and so it took forever to get started. I hate feeling behind. I think you guys know this by now…that time and I always battle and she is never on my side. I also don’t fair well when I don’t know whats happening. I know I feel extra on edge because I’m not sure what all is going on in Mark’s body and I don’t know when it will be handled or how. Also, we have company stopping by this morning…and I don’t know when. I don’t like people to come in (or any chaos) when I am trying to hook Mark up and take labs etc…I have to concentrate. I also do my workout when Mark is dialyzing…and I can’t just start up the treadmill or start my workout if someone is coming over and so I can’t plan my morning at all. It makes me unsettled. I do NOT mind at all if people come see Mark while he is on the machine. It makes time go much faster for both of us. I just want to make sure I state that.

This week Mark has an MRI (Tuesday) on his hip and his brain because he has a lump on his head and since this cancer is so aggressive…we need to look at all the aches and pains. Since they did see stuff in the shoulder one, I am certain we will see stuff in this one. I’m not trying to be negative, just realistic. Wednesday is normal for him but I take Felicity to a baby appointment. She is in her last month and so she goes weekly now. Thursday we see the Radiation Oncologist to go over MRIs and to get a simulation and scan. If that day gets away from us we will have to do dialysis on Saturday and thats a bummer because we were thinking we might try to drive to Chicago to see Cora for the day and maybe stay over. I guess we will know more on Thursday. I can’t tell ya how to pray. There is cancer there. It seems to be everywhere….and you can still pray for clear reports but maybe more importantly we should be praying that we can handle all the upcoming news emotionally well. Clear scans and reports would be an awesome surprise though!

I would like to request….if you have or know anyone who has one of those small Amigos…like a little electrical scooter….we would love to borrow. If we go to Chicago and mark feels good enough to go…he can’t walk around, he needs a scooter. Call or message me!

Mark is stil crazy about food! He wants all the stuff. Lasagna, burgers, chinese, etc. He makes odd requests and he has one of use running to the store to get what he needs. He did make dinner…Friday night I think. Smoked venison he smoked on the grill/smoker and then he had Aly help him with veggies and potatoes and when Hatcher and I came in from working out in the garage…they had a nice littel spread for us. It was really good. That takes alot of energy from him but I do think he likes to be able to do something and also make the food he is craving. I like food but sometimes I think eating is over rated!

I’m struggling. Not that you asked but its my blog so… I want to meet Mark’s needs but never feel like I really can. I don’t know why I get angry. Not at him…just angry. I don’t want to be short and aggrevated. I want to be patient and loving and sweet. The evil emotions always win. I want to meet the needs of my kids…even though I don’t have a clue what they are sometimes and I still want to protect them from the world and people. I want to get projects done so Mark will know they are done and he doesn’t have to worry about them but it’s a catch 22 because he wishes he could be the one doing it so I know he struggles with that as well. I think alot of this stuff will be in the podcast so make sure you tune in. Not only for the drama (lets face it…we love other people’s drama) but also maybe to glean from our mistakes or maybe it will help you to understand other people in your life, or even yourself. From medical chaos, to kids, to adoption, to the Bible and even fun stories from the dating days and airplane excursions. I think the podcast will cover it all. The first one was an interview with me and with Karson. I think the next one I need to turn on him and ask the same questions and I know he plans to interview all the kids one at a time. Should be fun.

Comments 5

  1. So much I want to respond to. I can understand you struggling…it’s a lot. Sometimes I get angry that even after making good choices with food and exercise, cancer still comes…then I struggle with all the sugar and chocolate too. Bill and I are in the difficult before…hoping for clear scans…relief, grief, anger…it’s a hot mess, but it leaves us in the place of drawing close to God, and that’s the best place to be. It’s both hard and good to read your and Marks written words. We’re praying alongside of you…((hugs))

  2. Dusty we have a power wheelchair. Brand new. Was bought for my mom who is in a nursing home and she can’t use it. You are welcome to it if you want.

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  3. Dusty we have a power wheelchair you are welcome to use. I am Danielle’s mom and have known Mark forever. If we can help contact me.

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