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Pain Clinic #4

During my last visit to the pain clinic a plan to manage my pain during surgery and post-surgery – if that day ever comes – was laid out for me. There was some discussion in earlier sessions about how difficult they believe it could be to manage my pain down the road because of the high level of pain medications I’m currently taking. That’s also a part of the reason they haven’t increased my pain medications to treat the excessive pain I feel now. Imagine being on such a high level of pain medications that anesthetics might not effectively manage your pain during surgery and then after having your abdomen sliced open there is nothing you can take to relieve the pain. Can you imagine that? I don’t want to.

The pain specialist’s plan for surgical pain management is modular. In the sense that the anesthesiologist can do parts of it or all of it. However, there is one point she feels they should not bypass: an anesthetic review. What this would involve is sending me for a consultation at the Anesthesiology Clinic ahead of surgery. The reason for this is that patients usually meet the anesthesiologist minutes before surgery, but because I am a “complicated case” it would be beneficial for me to go to the Anesthesiology Clinic for a review of my current pain management treatment and its effectiveness to have them create a clear plan for my specific needs. In short, they are going to have a hell of a time helping me cope with pain during and after surgery.

The rest of the plan is where there is room for adjustment. Which recommendations the anesthesiologist uses will depend on the type of cut the surgeon decides to make to do the surgery. According to the pain specialist, if the surgeon chooses to do the resection through a horizontal cut in my lower abdomen I should have a large dose of Gabapentin – about 1200mg – before the start of surgery. This should help to prevent a big pain flare up. I would then have opioids during surgery followed by a Dilaudid button or a Patient-Controlled Analgesia (PCA) post-surgery to manage the pain.

But if the surgeon opts to make a long vertical cut in my abdomen things change. The recommendation is for me to have an epidural to deliver freezing and opioid medications to numb the pain because this is the more painful way to do this surgery. The epidural must be inserted before surgery starts and the catheter would be left in post-surgery to give me pain medications instead of giving me a button/PCA. And in either case (i.e. whichever way they choose to cut) I would most likely get some ketamine and lidocaine during surgery to prevent “low effectiveness” of the opioid medications during and after surgery.

None of this appeals to me. Not just because of the high level of pain anticipated or the long scar I will undoubtedly be left with, but because she told me that I won’t be able to eat or drink for a few days after surgery. Apparently, after having parts of your guts removed your body needs time to relearn a few things, like how to digest food.

But the point of writing about all this is that surgery appears farther away than we all thought. I will be returning to the pain clinic on Friday. It’s time to explore more invasive pain management methods because some days the pain medications barely do their job. We will make a decision about what to do now in light of the delay. I might have steroid injections called Caudal Epidural Steroid Injections that are a “combination of a steroid and a local anesthetic that is delivered to your lower back to treat chronic back and lower extremity pain”. Or I might have nerve blocks known as Ganglion Impar Blocks that “treat chronic, neuropathic perineal pain from visceral and/or sympathetic pain syndromes”.

We discussed these procedures briefly a few months ago to educate me about what is available if I don’t have surgery. They are a temporary patch and I was told that they may not work for me because of the complicated nature of my pain. Regardless, I think the time to try them has arrived because I need more pain relief. So, needles here I come…

 

Green Day – Give Me Novacaine

Gratitude and Creativity: Labyrinth

I did something yesterday that made me smile and made me proud of myself. I drew a labyrinth. So what you may be thinking. And maybe it does deserve a “so what”, but it’s what I learned from it that’s important.

I think it was two or three days ago that I stumbled upon a document with instructions for how to draw a labyrinth. I was happy to find it because some time before that I found a Zentangle challenge that required drawing a labyrinth and I had no clue about how to do it. So I gave up on the challenge. Then I found the instructions.

How to Draw a Labyrinth

How to Draw a Labyrinth

The instructions looked straightforward so I decided to follow them. About ten minutes later, when I hadn’t successfully drawn a labyrinth, I was extremely frustrated and ready to quit. But being naturally stubborn I kept trying. I lost track of how much time it took me to finish drawing the lines that finally resembled the tidy example on the instruction page. However, I wasn’t satisfied with mine so I put it aside instead of completing the challenge, which is to fill the labyrinth with Zentangle patterns.

Yesterday after writing in my gratitude/art journal I went back to the page of my imperfect labyrinth to fill it in with Zentangle patterns. The first thing to do was set the pencil sketch in ink with my black Sharpie pen. I looked at my wobbly-lined labyrinth and decided that I needed to straighten the lines so I grabbed my ruler and found circular items (a small juice glass, a teacup, and a small bowl) that I could trace to draw the rounded edges. The center starting points I had drawn were skewed so I used my ruler as a guide and drew nice, neat, straight lines along its edge. But then, even with the pencil sketch on the page, I felt the same confusion I had a few days before when I tried to connect the curved lines to create the labyrinth’s path. My mind couldn’t – or wouldn’t – visualize the right direction(s) to draw. Thanks a lot brain fog.

I stopped. I took a few deep breaths. Then I really looked at the page and the lines. I finally was able to see where to make the connections to draw the lines. I didn’t need the ruler. I didn’t need to trace anything. I drew the labyrinth within minutes. The best part about it was that it wasn’t perfect. For a few moments I was able to let go of my need to make something perfect. I was smiling. Then I was laughing. I understood the point of the exercise.

Gratitude & Creativity - Labyrinth

Gratitude & Creativity – Labyrinth

It was about letting go and freeing my mind of anything but drawing those lines. I was able to let go for a brief time and it felt good. I didn’t move forward with filling in the Zentangle patterns. I didn’t feel the need to and I just wanted to hold on to sensations that I so rarely feel since my illness arrived: contentment, satisfaction, pride, and pure joy.

 

U2 – Beautiful Day

My Friend’s Prayers and Compassion

In the wake of a physically and emotionally painful week I received prayers and compassion today.

Today a long-time friend that I met in my first months of university decades ago called to see how I’m doing. Throughout our friendship we have had healthy debates about the existence of God and the meaning of faith. He has worked particularly hard to influence my beliefs and tries to have me see the world, if even just for a moment, through the lens of a believer in Christ, but I can’t. That ship sailed for me when I was about fifteen and my family and church minister failed to show me how God and Christ could fit into my personal belief system as I grew and started to question the world and my place in it.

As we continue to be part of each other’s lives we are more open to respectfully listening to the other’s point of view, but we know that neither of us will change our beliefs anytime soon. I may not understand it, but I do respect his unyielding faith in God no matter what happens in his life. I still don’t think living your life with the belief that everything is guided – if not already decided – by an omnipotent, omnipresent being is a sound approach, but it works for him. Over the years I’ve explored many religions in search of the same peace that he has. I haven’t had much luck. The only things that come close are practicing mindfulness and meditation, but my practice has little to no discipline.

When my friend called today and I shared the news of the week with him he was very upset for me. His confidence in my reluctant surgeon has plummeted and he believes I should try to get my case transferred to the second opinion surgeon. He can’t see how doing nothing and leaving me to live with this pain and even the slightest chance of developing cancer is the right thing to do. Furthermore, he doesn’t understand how my reluctant surgeon can so easily discard the opinion of the second opinion surgeon that I need to have surgery, or his strategy for the setup of a surgical team ahead of the surgery to cover any issues that could arise; not to mention the surgical pain management plans developed by the pain clinic to diminish the risks of greater pain after surgery. Especially when she doesn’t seem to have a solid plan of her own.

So my friend did the one thing he does understand. He prayed for me. He prayed that I can continue to endure my illness and the pain. He prayed that my doctors will soon find a way to restore my health and end my suffering. He prayed for God and Christ to watch over and protect me. And I was grateful for his prayers. Having him pray for me comforted and calmed me.

I may not share his beliefs but he loves me so much he prays for me often and asks God to grace me with his protection and compassion. I love him for that. And I must have faith and believe that when someone loves you enough to pray for you the goodness of that energy must have a positive effect in your life.

 

Duran Duran – Save A Prayer