Challenges and Changes Pt 3 (Steroid withdrawal is Scary)

Recovery from brain surgery continued to go very well at home. While tired and struggling a bit with word finding and putting concepts together we didn’t notice a great deal of change in behaviour or personality, at first, but I’ll get to that in a bit.

The first thing that I noticed when we got home, started to have visitors and get back into our normal lives was that Dave was taking what was being said very literally. Most of us read between the lines of what is being said to understand and develop a response for questions, well, Dave took the words precisely in their definition to provide his response. Shifting topics for him was also a bit of a challenge.

It’s a bit hard to explain as I have lost some of the examples as time has continued on, but it was quite funny at first to have to explain what someone was really asking when he answered in a way that was unexpected, not wrong, just not quite what the person was asking either. I don’t know how much of this was because of surgery or just the focus of recovery and the next steps in our health crisis, but it did create a couple of interesting conversations and a requirement to clarify what was being asked on a regular basis, for a while.

The hardest thing that we dealt with in the first few days home, and which has continued, was his ability to make connections with technology, gaming specifically. His first comment when we sat down to play our online game was “I lots my key bindings”. Those of you who PC Game understand. It wasn’t that they were lost or removed from his system, which was what I thought by that comment, but that he couldn’t remember what they did or how they connected to the game we were playing. This scared him and still does as he is really quite computer savvy.

I lost my key bindings. Online gaming requires that you map keys to do particular functions. He couldn’t remember what his game pad was set up to do or how it related to the game.

Over the next few days we found that the relational part of his memory had been impacted quite substantially by the surgery. Not a bad thing, but frustrating when you used to be the one to tell people how to do things and now you need a very slow and directional walk through to figure it out yourself, or can’t figure it out because you get lost in all of the icons. I am eternally grateful to our tech friends who walked him patiently through his technology challenges and are still helping him get back some of those connections. I now have a better grasp on what people learning technology go through in not understanding or being able to connect pictures to functions.

An amazing thing through all of this is once we figured out how to get him to remember where things were mapped to it all came back quite quickly. Gaming for him was like therapy as it helped to improve his speech, word finding and relational cognition quickly. We spent a number of days just playing with our distant friends, which made things feel more normal. Every day we saw improvements and recovery of what was lost to surgery, which wasn’t really all that much.

A week after surgery, staples were removed and our final appointment with the Neurosurgeon happened. At this appointment we had hoped to learn what type of cancer was found, but pathology results hadn’t fully returned. Our Neurosurgeon was exceptionally impressed at how well everything was going and was very happy with the result of surgery, as previously indicated.

Here is where things started to go a bit weird for us. During this week we had received a phone call for the consultation appointment at the Tom Baker Cancer Center. Unfortunately, the person calling didn’t share what the appointment was for nor much detail at all about the process or expectations. We knew based on our conversations with the neurosurgeon that we were looking at radiation and chemotherapy as the next steps, so the appointments were expected.

This packed the end of that week with appointments. Meeting with the Radiology Oncologist (team) to discuss the goal of that treatment, and being fitted for the radiology equipment that would be used for the radiation treatments, all on separate days. Again we were hopping to know what type of cancer had been found, but were not able to have a definitive response due to pathology not being fully back. This was shared by a student who was working with the Doctor. Yes, it was an odd appointment.

We also met with a Pharmacist again to talk about how the recovery and taper from the steroids was going. At the time it was good and we weren’t noticing any changes to behavior or sleep so had nothing to report. Let’s just say that the meetings with this oncology team seemed a bit strange.

At the appointment with the Radiology Oncologist we were informed that there were two additional appointments, one of which we didn’t need to worry about yet, but no explanation of what these were, until we specifically asked. The first was the appointment with the medical oncologist (chemotherapy) and the second was an education session. There was a gap of a week and a half between the Radiology Oncologist appointment and the Medical Oncologist appointment.

It was just after these appointments that things changed and started to become strange and scary. Dave stopped sleeping. He was only getting maybe 1.5 hours at a stretch with 8-12 hours of awake time in between. We knew that the steroids could cause insomnia, but didn’t realize that the combination of the steroids and keppra could cause what we found out later was called hyper mania.

The first couple of days of not sleeping weren’t too much of a concern. Dave had been sleeping a lot and I know that when you do that your body has to re-regulate your sleep pattern to be able to sleep properly during the night. If I had been paying attention I would have noticed a slow progression towards having insomnia, but at the time I wasn’t critically analyzing his sleep patterns.

Along with this, however, came what I can only describe as obsessive compulsiveness. Dave became extremely focused on organizing the house and preparing to get moving on finishing the renovations that were started three years ago. He also became obsessed with re-connecting with people from the past and the belief that he was already cured of the cancer we didn’t even know what to call yet. He began to question if he even needed treatment beyond what was already done.

Scary doesn’t even start to describe the feeling that I was having during this week of “hyper mania”

While somewhere within him he realized that his behavior wasn’t healthy, he couldn’t figure out how to stop. Scary doesn’t even start to describe the feeling I was having during this week. I am not sure if any of you have experienced insomnia or can recall what happens when a person goes without adequate sleep for long duration’s, but there are studies out there related to this issue. It is documented that people can start to hallucinate, become euphoric, depressed or irrational, and many other things start going wrong. We saw the euphoria (which again was a side effect of the steroid) and irrationality, or at least I did.

While I can’t fully complain about the result of this lack of sleep, much purging and organizing occurred in my house, I was very concerned about the disconnection from the reality of our situation. We had no medical indication that he was cured. While I strongly believe in the power of positive attitude, it must be grounded in reality. You have to follow the path set out with the positive attitude to gain the result that is to be obtained. You can’t skip parts just because they are scary or you don’t want to face them.

During this week and a half Dave made grand plans to get things done without any consideration that how he was feeling at the present time wouldn’t last. Conceptually he knew it, but practically was ignoring that there would be a crash. Unfortunately, his excitement was taken as somewhat permanent and the plans that were being made taken as full plans, which hadn’t been discussed with all of the people who needed to be involved. This created a bit of challenge later when the crash did come.

And come it did, but not entirely the way in which I had expected it to. I have never consciously and intentionally caused someone to have a panic attack. However, this is what happened with Dave, which finally broke the hyper mania cycle, and we found out some of what was causing him to be in that state, not entirely steroid related. He was afraid of cancer. Well, forgive me for sounding uncaring, damn straight you are afraid of cancer.

We found out some of what was causing him to be in that state, not entirely steroid related. He was afraid of cancer.

But he was thinking that I was having a really hard time with what was going on, and while I still am struggling with all of this I have been vocal about it and not afraid to talk about the big scary that is living with us at present. Dave was, and maybe still is. However, once he was able to admit that what he was afraid of things got better.

I also found out that he thought that I was going to leave him. Which at no point had I ever said or even hinted at, but what he had heard from others who have gone through cancer is that it is really hard on your family and in some cases significant others can’t deal and leave. Hyper mania and sleep deprivation can cause all sorts of really strange things, including misunderstanding the way in which someone is speaking or dealing with issues, to hallucinating an outcome that isn’t remotely true.

We talked about all of the conclusions he had come to over the week, some of which were completely out there and some of which were more grounded. It was a starting point and took a few more days to work through as he started to sleep more and return to a more rational form of thought. However, that didn’t fully return to normal until our next medical appointment as he was questioning why he needed to go through treatment if he was already believing he was cured.

Yep, that’s where things went. Unfortunately, cancer isn’t usually one of those illnesses that just spontaneously goes away, it requires following a set series of treatments to make it stop or slow down. While those treatments vary in each form and person there is still the requirement for treatment.

I can’t even begin to describe what might be going on inside Dave’s head (especially during the mania stuff), but forcing him to talk about it is helpful, and I need to do it more, or find someone else that can.

Part of what we decided after he came back from the edge is that we want to avoid steroids at all costs. We both didn’t enjoy the result of the withdrawal. Our medical professionals agree, but if they are needed it will happen again and we now know more and will be able to manage differently.

Steroid withdrawal is really scary!