Jiggety Jig (cont’d)

DustyMark's Journey 5 Comments

Jan 27

Well now I don’t know what all I had intended to write yesterday but I’m sure I can manage to type out a few paragraphs.

After dialysis we were able to get to the pharmacy and pick up meds however, one of them wasn’t approved by the insurance. Its a pain really. In the hospital, for some reason, they decide to swap out one med for another. They both serve the same purpose but perhaps their pharmacy carries one versus the other….or its a perference, I don’t know but for me it means, calling insurance, enrolling in a program or calling the doctor and asking him to just switch the script back to the old one. I chose the second option. A quick jump over to Leppinks for milk and we were home. (still have to pick up that med but waiting to hear back)

Mark’s friend stopped by and visited for a bit and then moved a bunch of stuff in the garage for me so that our window guy could come next week and installed windows in the garage. We are determined to finish projects and have this house done. (Aly graduates this spring and we have a party to hold plus I don’t want to live in another house that took us 10 years to put up the trim) That means we rely on help from friends and family because Mark can’t do these projects and frankly, I’m just tired. The guys can move stuff so much faster than I ever could. The only problem now is making sure I know what is where. I know exactly what is where now…even in their totes and boxes. Hopefully, I don’t need anything.

The main thing we are dealing with right now is edema. Fluid build up in Mark’s belly and legs and feet. Its not painful but its uncomfortable. He had this issue when he first left the hospital in August/September (if you recall) and we had to take fluid off in dialysis slowly over time and man was it slow. After he started taking his chemo pill (about 15 days in) he started urinating blood and urine and after a week of that he was urinating like a normal person and all the fluid came off on its own over the next couple of weeks It was like someone opened a drain. (Well, really that IS what happened) You could see how thin he was once the water weight was off and we worked really hard over the next couple of months to gain weight. I say we because I play a large part is the food prep and serving and trying to think of ways to get the most nutrition the easiest. Now I feel like we are back at square one. We have to do the whole process over again. I know he has lost any good weight he put on but he does walk stronger so that part is great. We can only hope the new chemo pill will urge the kidney to urinate again like the last one. We don’t have the chemo pill in our possession well, because, its a medication. An expensive one that they don’t dispense easily and its also a waiting game. If we had it he might be able to take it but there are two hiccups. One: you can’t be on chemo when having surgery…it can prohibit healing. So its always held before and after. I’m assuming that he might be able to take it if we had it but since we don’t I don’t have to actually find our right this second. Second: you can’t be on the chemo pill when having radiation. He SHOULD start his round of radiation the week of the 7th (should) if all goes as planned but we are learning there isn’t ever a solid plan. He would have started Monday had they done the Planning CT and myelogram but since the bloodthinner wasn’t held…he can’t do that til Monday. So we are a week behind (in my brain) but after the radiation (3x total. every other day) he can start the chemo pill. So I feel a sense of urgency to get him back on the treatment. There is also urgency to get the radiation done because as far as I have been told, it will kill of the tumors and lesions and as long as the cancer stops spreading, they won’t return. The tumors and lesions on and in his bones (not bone cancer, kidney cancer metastisized) cause him deep pain. If that can be gone…the surgery totally healed….my thought and hope is that he will no longer need as much pain medication. Less pain medication means clearer head and thoughts and less consitipation.

Always a catch! There’s always something it seems. So the other issue he is dealing with is constipation. Going to the hospital, having surgery, being in extreme pain, having a ton of medication in you including anesthesia…..makes a recipe for a gut disaster and that also takes weeks and months to get back to “normal” and so we are on that journey as well.

There are some good things :). One is that he walks around so much better. Slow, but better. His posture is better too. He got on the treadmill at a speedy 1.0mph and did a lap around the track. Its too icy to go out walking so this will be great for him. Also, he set alarms on his phone for his pain meds so he has been doing that on his own which seems so silly but is SO helpful.

I’m off to make a frittata even though Mark will only eat a couple bites. We have colon hydrotherapy today and then dialysis as home that I’m not excited about but also keep telling myself it’s something I can do FOR Mark. A way to serve him and help him. Perhaps we will start a new series or something. I hate how much TV we are watcing lately but I guess its just a small piece of our life. One goal today is to make him a temporary bedside table until I can make the real ones. Its good to make goals each day right?

Mark-a model for Coras workshop two years ago

His chubby ankles in the morning.


Its later. We just got done with dialysis. Went perfect and we took off 3 L. No, I did not meet my goals. I did not walk either.

Mark really is doing great walking around but he seems to be very tired all the time. I mean when I talked to him after his surgery, he could barely hold a conversation and the effort it took sounded like he was trying to pull his body out from underneath a ton of bricks that crushed his body. I remember talking to him Saturday morning and it was like a new person. The relief was huge!

I don’t know if I said this or not but we can choose from two options for upcoming radiation. We can go back to UofM and do their simulation and then go back for 3 sessions every other day but then he is done. Their machines and techniques are much better and the radiation is more exact. OR we can get it done in Grand Rapids over a 10 day period. Evidently their machine is more “old school”. We are choosing UofM because it is more precise and up to date and it gets done quicker (so we can get back to cancer treatment) and also I added up the drive time and its less driving to go to UofM but harder to get all the dialysis treatments because it will be an all day event for a 10 min treatment.

Tomorrow is another long day and we always look forward to Saturdays. Its not like you wait and wait for him to get home and then when he is there you can just sleep in, sip coffee, get his meds, see to his needs and watch him get better as if he only had back surgery. (can you tell we long for that a bit?) Its not like that. Yes, I get the meds, and make the food and see what he needs but we have appointments and dialysis and all of that takes up your whole day and it just feels like it doesn’t end. Same for Mark. They assess one thing but the other things are just there. You don’t feel like you are getting better. Don’t get me wrong. I’m glad he is home and so is he but the craziness doesn’t stop just because he is here.

Comments 5

  1. Mark – his name is on a sticky note on my monitor at work – praying praying and hoping. Dusty, your diligent care and knowledge of all of this is beyond my comprehension. Father God, please meet each of their needs as only you can.

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  2. I like the sticky pad idea, and if you’re working you might need that. We’re retired but still quite busy. But Mark and Dusty’s names are in my brain and not much time goes between prayers.
    Joshua 1:9 Have I not commanded you, be strong and courageous. Do not be discouraged, do not be afraid; for the Lord your God is with you wherever you go.

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  3. When Tom was on so many meds from surgeries last year, he found the natural way to work with constipation is eating two dried prunes after each meal (which he still does). So happy to hear Mark’s home. Continuing to pray daily strength for both of you.

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