So a week ago I posted this blog about my hubby’s pain issues and the surgeries that were scheduled for next week. We had, quite literally, no idea what we were walking into. That’s some scary stuff. Looking back at all we’ve been through this week, it still awes me how much we didn’t know.
I meant to update Friday evening. And then again on Saturday. But it’s taken me a couple of days to get my head together enough to put my thoughts into something coherent. Writing always helps me process. So this blog is as much for me as it is for you. Yesterday I was exhausted. Couldn’t even put a complete thought together. I told hubby I couldn’t see the next step. This, for me, is panic. Today is much better. (Hence the quote about Sunday in the image. It works really well for me today!)
So let me back up and give you a quick update on hubby’s surgeries. (Yes, he had two!) On Monday morning, we found out that the first procedure would only take about 15 minutes total. He went back and in less than an hour, he was sitting up in a chair eating crackers and drinking juice. They even skipped a portion of the recovery area because he ended up being awake for the surgery. Yup. They needed him awake and talking during the procedure so they could tell if the leads were in the right places. Unfortunately, they weren’t able to give him any pain relief at all, because it would mess with whether the trial was working or not. So other than a local in his back, he felt most of it. And no, they didn’t give him pain relief after. So his back was pretty spectacularly painful Monday through Thursday last week. But the key question everyone wants to know – how was his groin? Well, it was pain free for the first time in 7 years. The trial worked! So we decided pretty quickly that we would definitely do the permanent implant on Friday. He felt so great that he MOVED A WASHING MACHINE ON TUESDAY. It was the first time in 19 years of marriage that I ever raised my voice at him in public. (We were in the front yard.) You see, they loaded him up with TONS of steroids so he was nesting all over the place. Getting him to stop and calm down LESS THAN 24 HOURS AFTER SURGERY was miserable. The only thing that worked was me telling him that his bandages on his back were bleeding. I was pretty ticked about it. I admit that I held on to that one for a couple of days too.
By the time Friday morning rolled around, we knew two things about the surgery. He was ready for it. And they were probably going to need to insert another lead because the pain relief coverage missed part of his pain field. So I was ready for surgery. Or so I thought. I expected it would take more time. They were implanting another lead and the battery pack all inside his body, so I figured about double the time. They told me to expect a couple of hours max. He was rolled back before 8. I figured I would hear something by 10 or so. But the clock ticked and crawled past 10:15. 10:30. 11:00….11:30. I admit that I was doing the tennis tournament head swivel between the clock and the door to the OR area at this point.
Around noon the doctor came out. They had decided during surgery to implant 3 leads rather than just the one. They wanted the most coverage they could give him. I can agree with that reasoning and both hubby and I would have told them to go for it anyway, but it still came as a surprise. Adding that 3rd lead adds another level of pain for his back. It brings it higher up for his back pain. But it’s a trade off we’re happy to do. And then there’s the recovery. Oh did I forget to mention that? Funny – so did they. Nowhere in this entire process have we been told what to expect from this. It’s so new that they don’t have paperwork on it, systems, expectations. And they forgot to mention one little thing. The next 8 weeks he can’t do ANYTHING. AT ALL. This was a stunning blow for both of us. I mean he moved a freaking washer on Tuesday and when I called the doctor about it, he laughed. But he cannot do a single, solitary thing for the next eight weeks.
The next eight weeks are going to be rough. You see, they loaded him up with a second dose of steroids. When I say dose, I use that term liberally – it’s actually about double what he’s used to with his typical pain treatments. He usually gets about half of what they initially gave him on Monday. He gets that once every three months. Now they’ve doubled that and given it to him twice in a span of 5 days. The steroids send you on this amazing journey that’s like PMS on uppers. Laughing, crying, sobbing – but mostly prowling around NEEDING TO DO SOMETHING. And there are the bouts of ‘roid rage’ – yes, that is a thing. We’ve seen it. It’s ugly. So basically, the doctors have given me a caged lion to keep calm and peaceful for 8 weeks, but they’ve given him enough red bull to power a millennial think tank for six months. It’s going to be hard.
My first thoughts were of him – of course. I told the doctor not to give him any leeway. My husband needs to hear it from the doctor – how dangerous it is if he moves. You see, if the leads moved during the trial, it was okay. We were going to take them out anyway. But if they move now, we’re out of luck. They CAN’T REPLACE THE LEADS. What’s happening right now is that scar tissue is the only thing holding these wires and leads inside his spine. They have been very carefully placed and now they can’t move for a while. (Eight weeks to be precise.) That scar tissue will anchor those leads exactly where they need to be. (With previous Spinal Cord Stimulation, they had troubles with the leads coming out or moving because they were making the leads external – coming to your spine. This procedure builds it INSIDE his spine.) If the leads move, the very same scar tissue that we’re praying anchors the leads where they need to be will stop the ability to replace, move, or change the leads. So if it gets messed up, this is his chance for pain relief – out the door. Permanently. Back to pills. And lots of pain.
So the orders are: No bending at the waist. No twisting. No reaching. No lifting. No arms over head. NOTHING for eight weeks. We had no idea. My husband went into full panic mode when he came out of recovery and realized the implications of that. Thinking that he’d be able to do a lot more things once he’d had the surgery, he had put off some jobs that really needed done in our house. Our downstairs toilet had sprung a leak and he pulled it out before surgery. Thinking he’d have a short recovery, he figured we’d be without a toilet for 2 weeks tops. Not through the holidays. Both of our cars are having difficulties. They’re okay to drive for a bit. But they could strand us at anytime. A two week or so stint with them this way is fine. The holidays and a couple of months? Not so much.
I admit that after having the surgeon and the St. Jude rep lecture him strictly on what he cannot do (and seeing him willing to pay attention) I was able to relax on that part of things. But during a conversation with a friend who was asking how he was doing, this casually dropped in my lap: “I hope you’re well rested because your battle is just starting.” It was a sucker punch for me. I’d been planning on the second surgery to be the pinnacle. Several times between last Monday and Thursday, I mentioned to hubby that I couldn’t relax until the second surgery was over and done. It was hanging over our heads. I figured getting to that second surgery was the top of the hill and the rest would be smooth sailing. I had put more hope into this surgery and his recovery than I had realized.
In a quirky weird twist of fate, all of my clients, gigs, and jobs ended the week before last. Even long term clients I have had for years on a monthly regular basis dropped without warning. I thought it was so weird to have everything stop little by little. I mean in one day I had four conversations with completely different random clients – all of whom needed their work to stop the following week. It freed me up for surgery. But it also dropped all my income. I figured God was clearing my plate for new things. I didn’t expect this. I wasn’t ready for it. Decades of being a military spouse have trained me to be ready for anything. This time I wasn’t ready for it.
One of the dynamics I’ve been struggling with is that outside of the physical horrors, we’ve obviously dealt with a lot of blows to our relationship. The dynamic in our house hurts on most days. When he feels good, he wants to do things and he will frantically try to attempt every repair and job that he’s not been able to do all at once. This usually ends up with all of us in a panicked haze because the drive from him is so strong. He HAS to do it while he feels well. I’d like to call it a tornado, but it’s more like a hurricane. It comes from every side and it’s manic, fast paced, and crazy. But then two or three days later, he’s unable to move again. I have to step up then because he’s unable. I admit that we have struggles with who is in charge in our house. And we have had these struggles since our early days of marriage. He’s the head of our home. That never changes. But he would go TDY (temporary duty assignment) for a few weeks or be gone for an extended amount of time and I would develop a system for things around the house. I was a single parent. Then he would come home and it would all change. This isn’t much different. I have to be in charge when he can’t be. But when he can, he does it all differently. Except we have the added layer of him being home to see that I’ve stepped up. He resents that I have to. It angers him. We both get it. I know where it’s coming from. He does too. That doesn’t make it any easier to deal with. It is a vicious cycle for all of us.
I didn’t realize I had put all of this hope into this surgery. He told me that he was afraid to hope because it would be devastating if it would be taken away or if it didn’t work as promised. I understood that. I thought I felt the same. I didn’t realize until the doctor said ‘eight weeks of nothing’ how much I had put into dreaming of what our lives would be like very shortly. I had the holidays mapped out.
All of this sounds quite pathetic doesn’t it? I do get that. He has pain relief. I mean he’s hurting now from the surgery, but that’s temporary. The permanent device is implanted. If he can settle for eight weeks, we’re good. I really have nothing at all to complain about. Lord willing, we are getting the very precise healing that we’ve been waiting for. It’s just going to take a little longer to get there. And in the middle, I need to improvise, adapt and overcome. (Military spouse takes over here.)
I usually have the Thanksgiving meal elements all purchased by now. Yep, I told you I plan ahead. By this time, a lot of the Christmas presents are purchased and we just have little things here and there to do. Not this year. Not a thing in place. I hadn’t realized I’d been planning for his help in my mind. I had an image of the first Christmas in years where we’re together on everything – the decorating, shopping, etc. It was quite the rosy Hallmark card. So I’ve just got to put that away and set aside the disappointment. Because he IS going to start 2017 pain free. That’s what I wanted. That’s what WE wanted. Next year we’ll live the Hallmark card.
We’ve settled on January 1, 2017 as the first day of the rest of his life. We can work with that timing.
You know, I sort of roll my eyes at myself because my first thought was of the 8 week trial HE has to undergo. He is going to need to learn to let others help him. He’s going to have to be hands off. He’s going to have to settle and listen to orders. It wasn’t until the next day that I realized this is going to be as big a trial and learning experience for me. A friend shared a devotional about 10 weeks of boot camp training you for the rest of your life. That applies here for our whole family. We are kicking into boot camp training.
We’ll get there. It’s just going to take a little more work than we thought.