Truth of it

Well today I slept till noon. In the middle of the night I allowed myself a tylenol, which helps alleviate the pain that I can sometimes feel in my chest and back and ribs. I know my doctors would say to take morpheme…but I know pain, and this is just a shadow pain…muted, mostly, and tylenol can do the trick.

So I sleep in and savor it like a warm bath. But there is life out there! In my mind I have made myself low sugar peanut butter cookies, and I am have made myself goulash and more kaposta. And in my mind I have finished my manuscript and posted it on this website for access.

in my mind I’m already wearing the incontinence diapers we bought for the cottage, which means I can finally chill out about mistakes.

In my mind I have found the energy to go buy that acrylic painting paper I need so not every painting is on thick canvas.

And in my mind, I can basically tap dance – and walk up the stairs on my own.

But the only parts of that that are true rests with the incontinence and the weakness when it comes to the stairs. And then there is my husband who I worry about all the time. Worry about his work, but also his emotional state of being, and how it is such a struggle to do this for us both…..though downstairs in bed or upstairs in zero energy but pushing any how land he is always fun to be with.

No energy for proofing. i am sure it is getting worse and worse. Oh well, at least words hit the page.

Done

PS I am getting new glasses and that is exciting.

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try to keep living until you feel alive again

Which is what I will try to do.

It’s official, I’m being moved to pallative care. Zsolt and I visited with Dr Canada who, and he officially bowed out. There is nothing more that he can offer in the form of treatment. Now I move into a different circle of suppourt that involves home visits, wheel chairs, IV for hydration and more. It is very hard to accept. But I will do as the saying goes – try to keep living until I feel alive again.

In the meanwhile, I’ve just today discovered that I enjoy filtered apple juice.

This is all I can manage to type. It’s a sad day for us.

Back to Bed

So now it’s Sunday, and as predicted I am in bed resting. There has been some glorious napping today, as reward for all that ridiculous advocating yesterday and Friday evening.

As it turns out, my eye is fine. There is more to do, but at least my eye is fine. (vision not so much). My MRI has been hurried up, as I think it should have always been, so that is a win too. And the nose bleed has calmed down. Next week I visit with my oncologist, and we start to get the treatment going.

Time to take care of this cancer bull shit and reclaim my body.

In the meanwhile, I went to Winterlude today with some excellent people – being my two brothers and their partners. We walked/skated the canal, sipped hot drinks, then went over to the ice sculptures. It was freaking ZERO degrees in the city, which is bizarrely warm. So, by the fate of a few texts send by my bros, we caught the beautiful ice sculptures before they began to melt away.

Winterlude

And now I’m home in bed and have been napping like crazy. NAP-attacked. My brain needed it. This evening I think we’ll order some Butter chicken and onion bahji from Havali’s because it’s yummy and my new form of comfort food. Then I’ll go to sleep, and start a fresh page on life tomorrow.

The eye continues to bug me – my left has some very hazy vision issues so it’s truly odd to look at things up close, particularly books or computer screens. But at least I know that as we move forward and treat the issue this can be, in time, resolved.

Not such an easy road ahead, but finally we’re starting in the right direction. There were a few moments this weekend when I remembered my need to advocate even though I truly hate it, and so I kept asking questions – but even more importantly, kept going back I until I had the answers I needed.

No wonder I’m napping all day today – minus the Winterlude good times.

And that is all. Everything is okay. And now I’m going to have some hot chocolate, and then SLEEP MORE.