I know I haven’t posted a blog for a few days now. I have been wrestling with where things are at. We have had a lot going on as well. All combined has made it difficult – emotionally and on the schedule – to sit down and process my thoughts enough to actually write about them. Somehow, all of my kids are gone tonight and Tim wanted to watch a WWII documentary, so I’m able to steal a few minutes for my blog.
The easy stuff first: I had my surgery on Monday morning this week. As an announcement to the world: I’ve had my ovaries taken out (oh, the surgeon thought it important to take my Fallopian tubes, too, for whatever that’s worth!). It was a pretty straightforward laparascopic procedure from which I feel mostly recovered. Monday and Tuesday were a bear, but after that I’ve been mostly back to normal. I was at church Wednesday night leading Awana and loving it!
As to whether the surgery was a success or not: I can tell you definitively that, yes, the surgeon took the ovaries out – I have a picture to prove it! But will it solve my seizure problems? I don’t know yet. And I won’t know until enough days have gone by without seizures to say that yes it worked. According to my seizure calendar, I would expect to have seizure problems during the first week of October, so if I make it through the first week of October with no seizures, then I will be able to start breathing again. Just kidding – then I will be able to say that the surgery is looking like it worked. Until then, I daily, sometimes hourly, hand it all back to God and tell Him He is in control. It’s one of the hardest things I’ve ever struggled to let go of.
Now on to what I’ve really been wrestling with over the past week or so. Last Wednesday, the hospice nurse was making her weekly visit. I had asked her to pursue a few questions for me with the ALS clinic that I had not been getting answers to. Boy, did she come with information for me. For those of you that have a hard time thinking about end of life issues, you may want to stop reading now.
I had been wanting to know if there was a tighter timeline that I would be able to anticipate – particularly how long the final stages of ALS would take. I know that many ALS patients experience air hunger in the final stages of the disease and will use morphine to alleviate the anxiety that goes with that. I wanted to know how long of a time frame that is – as there is a big difference between having someone on morphine in your home for a few days compared with a few months – keep in mind I have teen and preteen boys in my house. To help me be prepared to make the kinds of decisions that I will need to make, I wanted to have as many facts as possible.
Jill, our hospice nurse, was able to educate me and I’ve been reeling ever since. It looks like when the final symptoms begin to appear, we will have somewhere between a few hours and a few days before death. The final symptoms will be severe grogginess because the muscles around Tim’s ribs will no longer be able to push the carbon dioxide out of his lungs. The carbon dioxide levels will become toxic very quickly. It will be a mostly painless process for Tim’s body, and he will be mostly unaware that it’s happening.
What sent me reeling the most is that there is no way to anticipate when these symptoms will start. The grogginess is the next symptom. There will be nothing to indicate that we are getting closer – it will just come. On Thursday, I did end up speaking with the palliative care doctor at the ALS clinic and he confirmed all the things that Jill had told us the day before. He asked when our next clinic visit was and I told him it’s scheduled for October 11. When I asked him if we should even come in and I felt that his answer spoke far more than just the words he used. He said that the stress it would cause for us to get Tim to Minneapolis and back would not be worth it – he basically recommended we not even bother.
Even as I write this, I feel my shoulders tensing and my breath becoming ragged. I feel like I have been living on broken glass for the last week. And it seems like it will be that way now until those symptoms start to appear. Every time Tim takes a nap, I question if he seems extra groggy. I’m constantly checking to see if he is breathing alright. I think most of us as caregivers are beginning to mentally shift to comfort care.
I’m so ready for this all to be over. I am so NOT ready to let him go yet.