Like a River

DustyMark's Journey 6 Comments

Your veins are like a river…if the flow gets clogged or something slows it up…it will find another route and create a way to flow.

Monday we drove down to Davita so we could do dialysis there and keep working his fistula but it just wasn’t cooperating. In fact, I think she he had it put in in November (?) we have only been able to use it with both needles…twice? Usually when it doesn’t cooperate the nurse can do one in the arm and then use one lumen in the chest CVC but on Monday we were all CVC. Its slightly frustrating to leave our warm cozy houst to go to GR to do something we could have done at home. Nobody knows its not going to do well, though, its not something you can predict. Taylor, our nurse, told talked to the doctor and they decided we need to go home and exercise it more for 3-4 weeks and hope it gets bigger and stronger and then just use the CVC on the home machine. That was kind of a relief because winter is a good time to stay in (or fly south) and not go anywhere but even though he has been running well, I’m not excited to be in charge. So far so food though. It does allow us to be flexible. Cora was home on Wednesday and we could all have breakfast together and take our time. We can work it around appointments and visitors and errands. Mark can be in his own house, with his own things, watching whatever wants. It IS more comfortable. Today we got up and went to have the fistula looked at and they did an angiogram (is that how that is spelled?) and looked into it. It did have a narrowing and they were able to open that up with a balloon and they also saw a very large collateral vein that is almost as large as the fistula itself. Its like a river…it didn’t get the flow it wanted so it found another route and created a second stream. Now he will need to go in and get that “tied off” as well. Then….it SHOULD grow much larger and hopefully then it will work the way it is suppose to. If so, we can get the CVC out and he can hot tub and shower and bathe normally.

So Cora did come home. She came home with a friend to take Hatcher to a concert in Grand Rapids. We planned to all go out to eat but about 30 mins before we had to go Mark said he just couldn’t do it. Also, Aly had been feeling cruddy and she couldn’t go either. So Hatcher and I met Karson, Abby, Felicity, Cora and Scott for dinner. It wasn’t the whole crew but it was a nice crowd. The kids had a blast at the concert and came home and stayed up way too late (me too!). We did breakfast at home and Mark had a virtual meeting. After that we did dialysis in the basement chatting with the kids a bit. Hatcher ended up goign back to bed because he had the same symptoms as Aly and we figured he needed a head start of rest and getting better. Cora went on a coffee/thrifting run for a while and then we all hung out before they had to head back to Chicago. There may have been some movie sleeping going on but it was much needed as they didn’t quite get the sleep required to drive 3.5 hours back.

So overall, Mark still feels pretty cruddy. He is hungry and wants food…but his appetite stinks. He did eat a good amount today though so maybe things are turning around. His blood work is kind of not awesome due to the fact that he is not eating enough or getting enough nutrition. We think the chemo pill is the culprit. Today was day 6 and he is producing more urine. Not alot, by any means, but some. He is sleeping less and more awake and is trying to get one walk in a day on the treadmill but its hard to do when you feel so bad. He still had alot of water weight but we are consistantly taking off at each session so hopefully that will get better too. We have an appointment next Friday at Metro Health to talk more radiation. UofM did the hard precise stuff…this is more general. I have no idea how many sessions etc or any details until we meet but perhaps I’ll call the office to get some more information. This would hit the pelvis area, specifically the top of the femur and the scapula. Mark was surprised the hear the scheduler say “femur”. I forget sometimes what I’ve told him or not told him or what I talked about with him or with a medical professional. When Mark got his MRI in December….requested by his oncologist…she never went over it with us. In fact, it looked like she scanned it over on the fly with us on a virtual visit. It was very “off the cuff”. Do you remember me talking about it? I take the time to read the findings and the reports. Then I compare it to the last one. (there are only 3 but…). This last one mentioned the pelvis sacrum and hips. So when I talked to the NP of the radiation oncologist office about radiation, I asked her if we should be including those areas and she said they could. As it turns out, it would be more sessions and since its lessed detailed, it can be done here at home so we were referred to Metro. They can also do the scapula. Yes, there are spots there. This is what we are learning. Cancer in the bones….hurts. The back was hurting because not only was there nerve pain from compression but it hurts to have cancer “eating” away at your bones. So if you radiate it and can kill it…the pain can subside. Mark’s back and hips have been aching and hurting and its possibly from this cancer in the bones (not bone cancer but metastisized kidney cancer). To us, it was confirmed that it probably is the cancer because Mark’s left shoulder aches…and so I went back and looked and sure enough…his left scapula is the side with the lesions/tumors. So Mark can decide if he wants to go ahead and have more radiation on those spots and see if it can not only make him feel better but kill those areas as well. The only real holdup will be the chemo pill. If he has to go off it then I’m not sure he will want to do it right now. I think I was told since is was a more general radiation (palliative?) that he might not have to go off treatment…

Mark didn’t know he had spots on his scapula or his hips….and neither did I. Because we were not told this. I read it and then reacted by talking to the radiation oncology office. I’m frustrated that doctors dont go over the readings and findings with you. If you are like me and what to know what is going on…you need to ask! This is my advice to you. Ask to go over all the tests and images and ask lots of questions. You pay them to be your doctor (they get paid alot!)…..they can take the time to do that. Because Mark had surgery….they saw the tumors and did the radiation but honestly, if you look at how this played out…….we only had the surgery because at our last virtual appointment we were very adament that the back pain was not tolerable and something was wrong. We were given an option to be referred to a radiation oncologist. It was his suggestion to go to the ER to be seen. Its almost like she just thought his pain was from the tumors and that it should just be managed with pain meds and that is just part of the cancer “game”….but finally just said, well if you must, you can go see about RT (radiation therapy). Even Mark’s PCP said, after we found out he had a compression fracture and tumors, he would need radiation and that was back in late November! Once again, all I’m saying is…be your own advocate. They don’t know what you are going through specifically. They know what they know and will go through protocol. Push them past protocol.

I followed up with the Cancer Center Treatment of American in Zion IL because I still keep hearing how wonderful they are. After a few phone calls the nurse advocate there that I’ve been working with told me she went over the timeline with the doctor and he said he wouldn’t do anything different. So that saves us a trip there and even though I feel like the overall care there would be better…staying on task here saves hours of driving.


Last dialysis session of the week. We really look forward to the weekend. Mark really wants to go watch Jaxi and Josiah Long play tonight. I think he will give it a whirl.

Comments 6

  1. Do you go to Grand Rapids for dialysis? There is a Davida in Fremont. I’m sure you know that but just in case I’ll mention it. Praying for you guys every day.

    1. Post

      Yes but the one in Grand Rapids is a home training one and we are -or were- training to use his fistual but because its been so stubborn…we are just home right now doing it at home on our own and when the fistula is ready we will go back to Grand Rapids to finish training. Now if we decided to not do at home…we can start going to Davita in Fremont 3x a week but the whole idea is that we will be home and not have to drive at all. Time will tell what is best for us

  2. Dusty, you mentioned ‘palliative’ in your post. Has Mark’s physician specifically told you if he is on a palliative treatment plan versus a curative treatment plan? If not, it’s an important conversation to request in order to help you and Mark make healthcare decisions that fit your goals. You are 100% correct in encouraging others to advocate for themselves in their healthcare journey.

    We are all keeping you and your family in our prayers throughout each and every day. Thank you for sharing these blog entries with us.

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