The Saga Continues…

Feb 24th 2022

Who knew you were suppose to order special T-shirts for a day of the month..2-22-22??? Who has time to even think this up Like hmmmm….let me study the calendar. Oh look! There is going to be a Tuesday in Febuary where the date is 22 and the year is 22 . Lets make a bunch of T-shirts and sell them and if people are twins….whoa!! Big bucks. Personally, I was like “it’s Tuesday. or wait is it? Yeah, I think so? ” not even sure what year it is and I’m certain I don’t know the actual date unless I look at my watch. But in all honesty….even if like was “normal”, I would not have know that. That stuff does NOT get me all jived up but if it does for you…to each their own.

Mark is on day 13 of his Chemo pill and he has started to urinate on his own. Its not massive amounts but it is way more than he was and it is helping the fluid to come off his body naturally. This is a really big deal and we pray it continues. His blood pressures continues to be low while on dialysis and so they have asked us to not take off fluid if it drops and since he weight is coming down on it’s own….slowly…then to not take off much per session anyways.

Today was beautiful wasn’t it!!? Sunshiney, clear roads and you can see dirt! Our driveway requires ice picks on the bottom of your shoes but the rest of the area shows signs of spring. Mark said the sun on his face in the car felt so good. Mark had a dental appointent today. He hasn’t had a formal teeth cleaning in years!! He traveled alot and then worked for himself and traveled just as much that I told him he had to schedule his own dental appointment. I didn’t know his schedule and so I was adament that he make his own and left that ball in his court. But now…since I make all the appointments, I finally was able to get him in. He said it felt good to get them cleaned but he wished they had made them whiter. I told him I think he has to make special arrangements and requests for that. So once again, they told him his teeth looked great and he has no issues. Here’s a good story though. The dental hygentist that was working on Mark knew his story (I’m assuming because Aly’s best friends mom works there but it could be from another source) and finally she stopped and told him the Lord was just nudging at her and she could no longer work on him without asking if she could pray with him. In fact, she physically could not work on him as she was shaking because she knew she needed to obey the Holy Spirit (those are my words not hers). Of course, he said yes, and she asked if he had issues with his appetite, which he does and so they prayed specifically for that. Cool huh!? The door is completely open (the real door) and she was totally transparent, not ashamed. I visited Kendra at the BBB to catch up on all things life and car shopping and then when Mark was done we went to see Tricia for colon hydrotherapy. I would say this last session wasn’t as “successful” as the last one but needed all the same. Don’t neglect your gut!! Its your second brain. We grabbed food and got home in time to visit with his parents and then we had to start dialysis. It was a late start but that’s the beauty of doing it at home. Its 7pm and he has 30 minutes left. We tried to keep his BP up by internet shopping and talking but he is tired so I stopped taking fluid off and let him sleep.

There is so much going on in my brain and in our lives. I can’t tell it all to you or you will think I’m crazy or rotten or whatever. Being a caretaker is hard. I was talking to our insurance case manager and she totally understands this. That poor lady called me Tuesday and as soon as she asked if it was a good time to talk I totally fell apart and started crying, I couldn’t even talk. No, it was not a good time to talk and no I don’t want to talk about it. I just want to dissappear for a little bit. Stop time, right…with my fingertips. I told her to call back tomorrow and when she did I learned that she was the caregiver for her husband who had kidney failure and then when she found out she was a perfect match for him, she donated her kidney to him. So then she was the patient as well so she knows both sides. I just thought it was really cool that she also donated a kidney and could really resignate with Mark and also “feel” more of our pain as now he has no kidney function in the one he has left. I just start to really look at our life…and it hits me. The reality of all of it hits me. I just want it to go back to before. I want him to rise up strong and well and start running and jumping and laughing that hard laugh he does. I want him to enjoy life again, heck, I want to enjoy life again. We take it all for granted. I mean we all go through our hard, and when you are in it, its hard! I will never say what you are going through isn’t hard just because mine seems harder. Your hard is hard. And you don’t think you could ever take on more but then you have to and you do. You just do. Its then when you look back and chuckle (not in a funny way) at the fact that you had a very cushy life with lots of flexibility and blessings…and you thought life was too “busy”. Well honey (I say to myself and maybe you) you did it to yourself. Most of the things you were doing, you chose to do. You chose to make your life crazy and you didn’t have to. Now you don’t have a choice. Maybe God was prepping me for the necessary crazy? I don’t know. I’ll ask Him someday. In the meantime, I’m trying to not dwell in my muck feelings. I’m trying to not feel sorry for myself, my husband and my kids. I’m trying to juggle the (what seems) impossible and still wear a smile on my face. Yes, I walked out of the house Tuesday and checked out for a few hours. I might have to do that again but it might be necessary in order to do this for the long haul. I just get sad. I know Mark does too. Maybe more days of sunshine will help perk our spirits and get us through a bit more of this crazy journey.

Tomorrow we go to Metro (UofM health-west) to meet with Radiation Oncologist there to talk about radiation to some spots in his pelvic area and his shoulder. He feels alot of pain there, especially the hip. Finally, his back feels better and now he is sort of limping. We have many questions regarding this such as, how long, how many sessions and does he have to go off chemo. He doesn’t want to stop and start again. We will know more tomorrow and of course, can share that all with you.

Specific Requests:

Aly is struggling to select a school for next year. She wants to run in college and enjoy the dorm life but also doesnt’ want to go deep into debt. We did get her fasfa done and so that helps us to make clearer decisions regarding cost etc.

Mark needs to keep peeing and he really needs to gain weight again. He loves food but this time his appetite is gone. He eats because he knows he needs to but doesn’t always want to.

We would really love to go away for a vacation but there are several pieces of the puzzle that need to fall into place (God knows what they are) in order to make that happen (some we will know better tomorrow) and it really seems impossible and unrealistic but I’m still hoping.

That our family stay united and open with each other through all of this.

That Mark’s immunotherapy gets approved by the insurance because as of right now…its not.

That’s it for now.