I Think We Lost October Too.

DustyMark's Journey Leave a Comment

October 21-10:20am

I thought appraisal day was tomorrow. Whoops. Good thing I already took the time to clean countertops, sweep floor and put dishes away. It helps but I would have preferred it to present better.

Mark is SOOO tired. We think it’s the Lenvima. Side affects are fatigue and headaches (among other things) and he is experiencing both. He walked yesterday but only .2 miles. He has really slowed down. He gets out of breath and his quads burn. We went for the ultra sound but are pretty sure it was super clear. He leg looked and felt better well before the appointment. We came home about 4? He fell asleep by 6 and slept for almost 3 hours (and most of dialysis in the morning and while I went into the store quick). We went to bed about 10 and he slept throught the night. The intention was for me to get up early and have some “me” time and maybe do a short workout…but I turned off the alarm and went back to sleep. The 6am start time became 7:30 as Mark didn’t rise early either. We did hang bags the night before so set up went fairly quickly. He was up for the first 1/2 hour or so but then went to sleep. I had to wake him to take his meds. Its super important that the Lenvima is taken at the same time each day so I give ourselves a 2 hour window.

October 22

I’m fine til I have to start marrying lines and filling syringes. I mean, I feel much better but the fight or flight feeling is still there. This invader in my home might be the death of me. I need more Ashwagandha.

We had to cancel an appointment this morning because Mark really just didn’t feel good enough to go. He forces food and we think he got in about 450 calories this morning so if he can do that once more and maybe twice, that would be great! I had to go to Grand Rapids anyways because since our Pureflow isn’t up and running I did not have enough dialysate to give him treatment so I dropped off our water sample (third time WAS a charm!) and picked up 8 boxes of liquid. I ran to the colon hydrotherapist since she was right down the road and picked up the cabbage soup she made Mark. After a quick trip to Lowes to grab two more outdoor lights, I was back home and getting the machine ready.

Mark says his back feels better. I still think there might be a pinched nerve or something…but he has backed off on the heat and has been icing and as uncomfortable as that is…it takes the inflamation down and so he was probably keeping himself in a state of inflammation with that heat on him all the time.. So that is a good report!

We hope to head up to the house so Mark can see progress and I hope to get three boards stained. Tomorrow I plan to finish tile (wow, it has taken a long time. I even had help!) and then grout it Sunday. If you want to follow that project go to Instagram and follow @jacknrubysreno.

October 24th.

I did not finish tiling but perhaps the friend I left there did. I had to stop at a friends and get home because it was Homecoming. I was hoping Mark might have the energy to go see the kids dressed up but he didn’t. He did take a photo with Aly though. They had a few close friends here at the house for photos and then went out to the Falls Golf Course for a large group dinner that was too big for me to host. This is something, for the life of me, I won’t totally understand. It’s Homecoming. Not a wedding. We do not need huge photoshoots on location or huge special dinners. I do think it should be fun, with food and friends and some shots should be taken but I think the whole school dance thing has gotten way out of hand. We have always tried to keep it pretty simple with some friends at the house, a nice potluck type dinner and then send them off. I don’t care that you all do this, if you did. I don’t think ill of you but when I take it all into prespective…I think its overkill and we are catering to our kids (including myself) beyond what we need to.

Mark decided to NOT take a pain meds before bed.  He slept well. We think the splitting headaches might be pain meds and not Lenvima.

I always worry that I’m not doing enough.  And I’m not.  I know there is much more you can do but its overwhelming and not only should Mark be on the same page but he needs to be willing and able.  Jumping from appointment to appointment is not feasible and going to the internet isn’t helpful.  His diagnosis is unique and always has a catch 22.  He dreams about food constantly and craves what he shouldn’t have.  (His kids get him a glass of milk with a cookie.)  There is a new remedy out…in Canada…that helps to heal kidney failure and end-stage kidney disease…but what does it do to a kidney with a tumor in it?  There are options and remedies and therapies…but are they good for Mark, can we obtain them and will they help?

Church was good today.   Expectations of Jesus.  It’s hard.  We do have expectations and hopes.  What if you feel like you have been doing what is asked of you and it still goes downhill? This could be an interesting and long winded conversation but I’m going to leave it here so I can ponder on it and go get something done today.

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