DustyMark's Journey Leave a Comment

November…nope December 1

Wow the time slides by now.

Latest update on Mark’s physical health….Monday we went to a consultation for his back. I orginally thought this was a procedure because the last neurosurgeon made it sound pretty easy. An oupatient procedure…an injection really. We started talking Sunday night that this makes more sense to be an consult. The way the medical world works now there is now way a doctor would work on you with detailed pictures of an MRI and recommendation from a neurosurgeon alone. The have to have eyes on you…Not your back or even any part of you body…they have to see YOU. Its a weird system but that is just how it is. Basically, this young doctor insecurally told us that the procedure they wanted to do won’t work because the outer membrane of the vertebrea (or maybe they meant spinal cord and are referring to the dura mater?) is gone at that L2. The bone there is deteriorated and so is that membrane and so a procedure to simply inject or paint “cement” in there isn’t possible as the cement can then leak out and cause more damage to the nerves…possibly leaving Mark paralyzed. There is another procedure called Kyphoplasty that can add support to his vertebrea but also they will do an ablation to remove a tumor that is in there and is pushing up against the spinal cord). This should take alot of pain away but of course the first couple of days after could be more painful than what he is currently feeling.

The doctor told Mark he would rather send him to Ann Arbor to his colleague who is much more experienced. That would involve waiting a week or so for a consult and then whatever time it takes to get in for the actual procedure. Mark was in terrible pain at the appointment and not willing to wait so we made the appointment. He said we waited too long to have this looked at (I’ve been hollering since the August hospital stay) and that if we dont’ do anything it is likely he will become paralyzed but even the procedure itself could cause more damage (if there is a leak) and he could end up with less or no mobility from this waist down. This was really hard news to take. Just getting Mark down there was hard, he was in so much pain and that makes everything worse. It makes me sad and I feel helpless. Then to hear…”well, you are really too late but we will try to help” was horrible to hear. We cried at the office…on the way home and much more that night. Plenty of thoughts went through our brain. A wheelchair on top of all of this? Our new house was more handicap accessible (we call it old people accessible) than our current house but I started to think we would need an addition already! I mean, why can’t we just have one thing. Dialysis. Cancer. Paralysis (back issues). Why all three? I mean, if I had to choose I don’t think I could but…why so much? We are once again reminded…this is not our home. We are not in control. We just have to trust. Its so hard when its so painful!! That night Mark was in awful pain. He did not sleep until after 4am…I was up with him…shifting pillows and wedges…placing ice packs and heat packs. Getting pain meds. None of those things really do anything for nerve pain. He would say his legs were burning on fire and that shocking electrical pain was shooting down from his hips to his knees. He would cry out, pray, plead. He would try to sing. Finally, I found a link my friend gave me of a youtube video of someone reciting scriptures over soft music. I put it on and put it between our pillows and let it play. Mark knew alot of the scripture by heart and spoke along with the voice until he finally relaxed and drifted off to sleep. I got up at 6:30 and let him sleep until 10:30 and so dialysis had to get put off until night. He woke in less pain and was able to get to our appointment at 1:40 with the nephrologist. It was a good appointment and he agreed that we should do this procedure and not wait. He has been a huge cheerleader for us from the begining and very proactive. Mark was able to go to that appointment and come home without the major sharp pain.

Here is our theory. The brace he wears makes him feel more supported and if the fell or got bumped it would protect him but we think it holds his body in a way that ends up causing more pain. Like it enflames that area or allows that area to get pushed on. Or it could be that the brace pushes on the bad vertebrea (that sticks out) and causes the nerves to flare up because…he didn’t wear it yesterday and he felt better.

Today (Wednesday) we had two appointments. One to his PCP to tell the surgeon he is healthy enough for surgery (Now tell me why there is no doctor at that office that can take vitals..look at history…check reflexes and push on his tummy???) and one to his Functional medical doctor at DBC. We went to Sparta for the first one and the nurse randomly said she read our blog???! What? She is a relative of a friend but its funny to run into people you don’t know who know your most inner thoughts!! (Hi Clarisa.). DBC are the most encouraging appointments. They do body scans and he told us that his body fat went up to 8%, his inflammation decreased, his hydration levels are good, his mitocondria function was maintained, and his muscle mass decreased. (interesting sidenote. People who come in and have gotten the CVid injection have had huge drops in mitocondria function) His goal was to get his body fat to 12%, and to add more mitocondria function. He is also a chiro and so he told Mark to absolutely get the surgery. He recommends it all the time. That’s another thing I like about him. He wants to work with the other doctors. He likes to come in and work on what is missed and pull the whole picture together. Also we like hat we can walk into his office with no mask. 🙂

We met with the nutritionalist and went over some more food ideas for max dense calories and then purchased our supplements and headed home. Between appointments I thought we would go back home and rest for an hour and then head to GR but Mark asked if we can stop at the church office. He needed to speak with two of the pastors for “5 mins”. Now, I’m no fool. Mark has never quickly went into that office. When he says he is going to get a haircut and then stop over to the church office I know I will not see him for at LEAST 1 hour if not 2. So our 5 min stop turned into 1 hour and filled the gap nicely. It was nice to visit and talk with everyone. I got a cup of coffee, talked potential baby shower, learned about a friends health, talked dating and helped with a house signing question. Mark was not in major pain and it was nice to see/hear him talk shop and shoot the breeze. He loves our church and loves to talk all about it and the great people there.

Home-dialysis- and figuring out food and supplements. Our doors for the house were delivered here….oops, so I need to get them up there now which is fine because we slid them off the Fed Ex truck into our truck. Brilliant.

In just 3 days we have definitely had a roller coaster of emotions. When Mark woke Tuesday he asked me if he was going to be paralyzed. I don’t know this answer. All we can do is keep going forward. I can be angry (and am sometimes) that no one ever would look at his back, or I can be grateful that we are getting to his back now.

Please pray that the surgery will create improvement so Mark can just work on dialysis and cancer. That he can find joys in each day through all this yuck. Each day brings some and we would like to enjoy it.

2 posts in one day. The next one is Mark alone. Check it out

Additional prayer requests: Marks cousing Tim’s wife went to the hospital with brain bleeds and was 32 weeks pregnant. The delivered the baby C-section but they are still there. I dont know all the details. She is quite young.

Our friend Sharlene from church. Battled breast cancer and is looking at going home to be with her Savior as there seems to be no more treatments for her and her health is declining.

My friend Amy who lost her husband this fall and today would have been their anniversary.

Theres so many but those three came to me just now.

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