Cattle Drive

Jan 20

I sit here contemplating what photos and prints and shelves to put up where….but I’m a bit haunted by the fact that I need to blog to keep everyone updated.

I was thinking as I went to close the garage door after my walk…this journey (and my life and more specifically, my brain) is like a cattle drive. You think that you are just sitting atop your horse strolling across the green praire. The sun is shining on your face as you scan the beautiful horizon while you drive forward on your journey. And then BAM…lighting or a gun shot and all the sudden chaos breaks out and the cows are going in the wrong direction! Thank goodness for cattle dogs (like alexa, calendars and lists) to help round things back up but we don’t always have those. Then you spend the next (who knows how long) rounding up those heffers and getting everyone and everything back to where you think you should be so you can re-evaluate and go forward on your journey. But you have lost time, a calve here or there (to wolves or coyotes) and bit of your mind. You are tired and hungry. Then a rain storm comes.

This is like my brain daily…I have good intentions and start strong but am easily pulled away (by my own brain or by life) but somehow I make it around full circle in the end and accomplish what I intended. Sometimes….little things fall through the crack….well alot of the times but I can go back and get them.

Our lives (your lives) feel like this too I bet sometimes. We think we have planned it all out and we think we know how it will go and we are so wrong. So many rainstorms and and thunderstorms come in and leave us soaked on our horse leaving us longing for that sun.

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took sitting down three times to get this far

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Okay I have to back track. I cannot wait this long to update or I forget things. As I mentioned before that this is for me as much as it is for you…so I can look back and remember what happened when. I know sometimes i put more info in here than I need to but that is why.

I think one of the most frustrating things besides that I can’t be in the hospital, is that it takes alot of time and energy and remembering (brain) cells to make phone calls and follow up and then when no one calls you back…it makes me angry.

So they put him on ketamine Monday and at dialysis they were able to take off 2L. Remember now, he is holding fluid and dialysis is the only other way to take it off aside from urinating. I think the swelling in the legs is not painful but not comfortable. The plan was to keep him on ketamine for 5 days (thats the max). They also had him on an oxycodone pump to click on every 5 mins. No one can sleep if they need to administer drugs to themselves every 5 mins. Mark told me he set a timer for 5 mins all night long to click the button. That means he hasn’t slept.

When you combine pain, high doses of pain meds, and no sleep…it gets messy and IMO, recovery gets harder.

So, just so you know…I have asked daily, either the social worker, case manager, NP on the clock or made a phone to patient relations to ask for an exemption. I pleaded that the pain meds leave him groggy and unclear. I pleaded that I knew his care better, that I could make sure he got food, that I could help him walk. But most importantly, studies show (and we don’t need them to know this) patients recover better and faster with loved ones around them and in a positive environment. I was always and continue to be, shut down. I actually didn’t talk to Mark over the phone alot until yesterday. I would get very choppy short mispelled texts to pray for dialysis. To pray for him. I had very short coversations where he would tell me he can’t do this. He would tell me he needed me there. There was alot of emotion and tears on both sides. He was and is losing track of which day it is and today he woke up not sure where he was at, scared. I know its all the pain meds adn the situation but it doesn’t make it better. Being on the Ketamine allowed him to at least talk to me but it didn’t really change anything else. He must have been more relaxed but he was still in a constant state of pain. By Wednesday night I was sure something else must be wrong so I went down the path of asking the nuerosurgeon to double check his work through imaging to ensure that it indeed did go as well as he thought it did and that nothing was out of place etc. I think they did take those Wed or Thursday and they showed up looking good. They stated that the GI is the source of the pain and some inferred pain as well but that just sounded like it was made up to me. (I said sounded) Mark has been constipated in the hospital for way longer than this so I had a hard time swallowing that pill. I went down the CRPS path and asked them to rule that out (chronic regional pain disease previously known as RSD) because he has a famly member with it and he is autoimmune and its possible. They did agree that his pain is excessive for this surgery and so of course I thought they should think outside of the box. I was told they ruled it out. I didn’t feel bad asking 4 times to 4 different people, and I dont’ mind being wrong.

They were considering a tube in the nose to help with stomach discention (didn’t happen thankfully)

On Wednesday day Mark talked to me really quick and he told me he really needed to have a good dialysis session and be able to finish it to get fluid off etc and that he had had a BM. He asked me how I was, and all you ladies know..when someone asks you, thats when you fall apart. He told me not to cry and to keep praying for him.

I think yesterday (thursday) is the day he woke and decided no matter how he feels he needs to make bigger efforts toward recovery such as getting up to walk, eating even if it hurts and staying on top of GI regiment but that is hard to do when you are so groggy with drugs. How can you really be on top of your own care in this state? But he recognized it and got up to walk first thing. He had also just work from a 4 hour “nap” for the first time. Over one week with only sleeping boughts less than 4 hours.

I’m getting the last couple of days mixed up but Mark feels emotionally and mentally and spiritually attacked. He just was feeling like if he couldn’t get things turned around, he will die there. The pain has not gotten better until maybe today, this afternoon, according to the NP. The PT cleared him for home….the GI team says his bowels are more empty and he is looking so much better but the NP still states they would like to see him have a BM. He is recieving enemas multiple times daily. His drain tube is out…he is NOT urinating much, and the pain team took him off the IV Oxy last night and put him on the oral to prepare him for home. Last night he called and told me he can’t do this. This is so hard to hear from him. I want to keep saying “yes, you can” but maybe it is just too much for him. I’m wondering and gathering that the pain is too much and he wonders if living is worth it.

I talked to the NP this morning and then tonight. This morning was discouraging as basically she said he has an acute period of surgical pain that may be chronic. That doesn’t make total sense but basically…he just might always be in pain. It might slowly go down as he fully recovers but like this is the hand he was dealt. She asked me how he sounded this morning but I had not talked to him yet so I could not access wheather the pain was better or if he sounded groggy and drugged up still. I talked to him later on and he did still seem pretty groggy but he was determined to walk. He said he was having weird dreams and such (ketamine can actually in some cases cause hallucinations) that seemed dark. He was scared because he knew that they were taking him off ketamine and since he was still in a large amount of pain, he was scared it would be worse again without it. (I guess it works best really only for the first 72 hours anyways). They were going reassess pain during the day, get dialysis tonight and hope for more BMs and then she would call me later. Mark said he has work after he kind of passed out after they gave him Oxy in pill form and he didn’t know where he was. He told his nurse he needs me there. He said he was so out of it, he doesn’t know where hes at (I think I just repeated that). The oxy hurts his gut but when he eats his stomach cramps up. I listened as his nurse helped him decide what to order so he could try to eat something and then they would space out the oxy so he got it right before dialysis…which conveniently was rescheduled 3 hours later so I hope that all worked out pain med wise.

Once again today I was told Mark doesn’t meet criteris for an exemption but I was thankful she followed through and asked. The NP called me tonight and said that as long as Mark goes off the ketamine well and can tolerate the pain, he can be discharged very soon. I’m not counting on tomorrow but its possible so I’m preparing myself to head there soon. I have no idea what I am bringing home with Mark in terms of needs etc. I’m clueless. They told me I can come in for a handson PT session. Yes, I can come in for that but I can’t come to sit by his bed. Even the nurses and staff know how ridiculous that sounds but I’ll take it because I need to go. The PT helped me work through some future appointments etc and then we got off the phone.

Next up:

Get Mark home.

Get on top of new chemo med and when it can be taken. (hopefully it kicks the kidney back into action)

He needs a wound check but we are not going to have to do that and can find local physician to take out staples next week.

Tuesday is the myelogram and planning CT scan. This is when and how they plan out the radiation treatments for the following week. Then the following week will be 3 days of radiation in his back and pelvis and that should be it for that. We shouldn’t have to repeat it. After that he can go back on his chemo pill which is part of the new treatment they were are deeply hoping will make the cancer back off a bit or alot. He also starts new immunotherapy ( I think) and we got back to UofM the 7th for that visit. We are contemplating a new opinion. The NP told me if we didn’t feel we were getting the care we needed we are not committed to the dr we have. I know this but its nice to hear if from within. She encouraged us to talk to the NP in oncology and see who else might be an option but honestly we might vear from there. Mark and I have to talk about it more and so I hope that can happen soon

We have alot of traveling over the next few weeks. We wanted to plan an warm get away but not sure yet how Mark will handle traveling.

I wanted to write more, differently but I’m just really tired now and still have shelves I want to put up before I go to bed. So I’ll just end this here and be better over the weekend with updates.

Mark needs to come home! Pray he can have good pain managment and come home and that me and the kids can handle all it contains. Join us in asking the Lord to sustain us!