I tried to write a more coherent post, but this is what came out – I almost think I should place everything in bullet points.
It’s been almost a week back on the Inlyta, and over all it isn’t too bad. It isn’t too great, either, but let’s focus on the positives first. Compared to the last round, I’ve done much better – only a little pain that was easily managed with Norco; while I’m taking naps daily, the fatigue isn’t quite as wearing as it had been; I’ve been able to be creative and even get outside a bit. So, overall, not too bad.
At the same time, though, I feel like I’m more fragile. I have to plan out each day so that I have the energy to do what I want or need to do. If I overextend myself, I’ll pay the price. I recently read about the spoons theory, which has really resonated with me recently, though luckily a shower won’t cost me 1/12th of my daily energy.
During the week, I met with a palliative care team at Kaiser. They got me hooked up with the Norco. It’s possible that ibuprofen would do the trick, but because I only have one kidney, and that one isn’t functioning at full capacity, I’m not supposed to use ibuprofen. So, opioids it is. And I’m thankful for them.
I am also looking for a support group for either metastatic cancer or for terminally ill patients. I feel like there are things I want to discuss that aren’t really relevant to a general cancer group where a large portion of the people can easily expect to survive.
And, since I’ve been able to get a surprising amount of sewing done, another thing on my mind is how to finish up some of these projects. I’m thinking that maybe I’ll try to get some quilting friends together to help me layer the tops that are finished. And I really need to find a quilter who can take care of the large top that I won’t be able to handle. Not difficult to find, but something I put off because of procrastination and not wanting to deal with the expense.
Also, I really “need” to hire a sewing team to execute some of ideas. I could get SO much done if people were sewing for me while I was in bed, resting. I’d be like Matisse, who was blind or nearly so, when he made many of his cut outs, using helpers to do the work.
I’m still struggling to get used to the way life is right now. Part of me gets a little depressed when I think that it may not get better than this. But, as Rob said today, what’s the alternative? I guess this is what they call the new normal. Ugh.