DustyMark's Journey 7 Comments

October 27th

Yesterday I hauled Mark up to the house…to see the new countertop but also with hopes of getting some work done. He didn’t feel awesome but knew he should get out of his chair and move and get a change of scenary. Earlier, whil he was dialyzing….I was texting a friend and told her it was my anniversary. She asked if we were doing something special. With some welled up tears, I responded…”maybe some lunch at the house”. We are just do limited. Riding in a car is awful. Sitting in a normal chair is awful. He often feels sick but is always in pain, and his appetite is hit or miss. The things he longs for he is choosing not to eat (well, I’m helping him choose). She immediently said “I’ll do it!!”. I could feel the excitement on my side of my phone. So I let her.

When we arrived she had made that whole back deck very pretty and inviting. Candles, table dressings, blankets, real dishes…table all set. Fancy glasses, sparkling cider, and coffee and dessert. We fired up our propane heater, got a few blankets on Mark and sat in the sun and enjoyed the view, the food and the company. So funny. Mark can’t stop talking about the wrap! Friends. Even the little gifts and talents you posess…as silly as you think they are. Use them and bless others with them! Thats why God gave the to you. I always say I’m good at alot of things but not great at any ONE thing. I always saw that as a curse more than a blessing. I’ve been thinking alot about that and I decided its a blessing and I need to (not right now but soon) bless more people with my many half way talents!

Given the circumstances. Our 2Oth was good and we will just halt our plans for another year right?



Mark has been urinating. This sounds strange to all of you reading because you do it several times a day and if you are well hydrated…more than most. So as his GFR plummeted, his urination did too. Like, pre-hospital he had to pee alot but it wasn’t producing a ton. After he went on dialysis…he really didn’t urinate much. After the biopsy of his kidney he has a ton of blood in his urine with clots…that subsided but he went home peeing red. Soon it turned to brown and then almost normal but he would only urinate once a day …maybe. Still reading? Ok. So this past weekend he started to pee red again…including clots. Clots are gone now and urine is getting a better color (brown) but he is peeing like almost a normal person. The dialysis nurse said they wouldn’t change his prespcription until he had 1000ml of output per day. He is doing that now in 12 hours. Probably 2000 per day right now. What does this mean? We are not sure if its good or not. Seems like it means his kidney function is increasing…I mean. I don’t need to be an MD to know that but why? What changed? When we do dialysis we are aiming to keep him at a certain “dry weight”. (which is no where near his real weight if he didn’t have all this edema. What I mean is his normal pre-sick weight is 172 all day and night. Now his target weight is 161 ish. We know for certain he still has at least 10 pounds of water on him. He probably weighs 145 ish with all water off. Your kidney filters and takes out toxins but this machine cannot totally simulate a kidney and it just can’t get all this water off. Plus if you take too much too soon you just feel sick). So each morning he weighs himself and that determines how much we “take off”. This week we haven’t taken off any because he is under the target dry weight. So non MD Mark and Dusty think….his kidney is getting rid of water on it’s own and his weight is going down. Once again. Not sure if its good or bad, but seems good. We see the nephrologist tomorrow. Stay tuned. Hoping for less dialysis, a new target weight and for him to agree it’s a good thing.

Now. His back. There is definately something going on there!! We are requesting a new MRI looking specifically at lower lumbar to make sure there is no cancer there or deteriation so that he (a chiro) can go ahead and push on this weird spot and give him relief!!! It’s pinching or something and now walking sometimes isn’t happening. Shooting pain!! Very nerve related. Lets pray for that to happen within the week and also we want to request a PET scan so that we can be sure its regional like they say. Everyone else gets a PET scan with a cancer diagnosis.. why not us!??We have halted massage as there isn’t alot of muscle there, alot of edema still and so much pain at this very specific location.


October 28th.

We see Dr Banga today. I will post or add to this later. Yesterday went off without a hitch (dialysis wise). Best day so far! The grouting at my Newaygo house was a different story :(. Time to get ready to go….update later. It was nice to sleep in and just drink coffee, take Hatcher to school and shop for sofas (except I really can’t find what I want so its not that fun!


October 29th

The appointment went well. His blood pressures look good enough to allow us to challenge him to take .5L of fluid off per treatment as long as his blood pressures don’t drop during treatment. He explained to us a few things regarding the kidney and did agree that the output he is having is great! The kidney is finicky though and that could come and go. Pray it keeps coming. We talked about weight gain as well and Mark is having so many problems just moving and he is getting very weak. With no glute muscles, your core doesn’t stablize, including your lower back. So not only does he has this little spot in his back that gives him a ton of problems….the wasting away of muscles offer no support for him. We will inquire about 2 meds from our UofM doc (one for weight gain and appetite and one for Epogen which is the hormone your kidney produces. That goes to your bones and produces hemoglobin.)Mark’s hemoglobin is still going down and if we can keep it up, we can avoid transfusions. But since this whole thing is a catch 22….producing more hemoglobin produces more growth overall (?) and that could defeat the cancer treatment. We will have to see what she says.

This morning’s start up was rocky…couldn’t get out of bed to even get started….lots of alarms..Mark is in extreme pain. If you are reading this this morning (Friday 8am-11:30) Pray for peaceful positioning so he can relax and sleep. The whole session will go better if he doesn’t move and if he is comfortable.

MRI for his spine is Tuesday and that seems like a long time to wait.

Oh. Mark got a personal handwritten note from one of the Wheaton football players. Very sincere and sweet and he shared some of his own struggles. It had us both in tears. God is working in so many ways and we won’t even see most of them. Mark was praying last night…and then handed it over to me. All I could say was “I don’t know.” I just don’t know.

Thank you everyone.

Comments 7

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  1. My heart hurts for you’ll.
    I love it that you were able to do a little sweet something for your anniversary.
    I am praying for you and hoping for good news.

  2. I’ve been reading all along and just realized I could comment here! My heart is so with both of you! It’s a long confusing haul, definitely not a sprint or a straight line.
    Hoping for more of the days u talk about above!!

  3. Oh, Dusty – what a sweet, sweet friend you have! What a special anniversary celebration. Thank you for sharing your journey. We pray for you both daily!

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