Another weekend

Here it is Sunday evening again.  It is still strange going into a week without concrete obligations.  I can go to the PTO meeting if I'm up to it. There is massage and physical therapy and the much anticipated visit with the oncologist, but there isn't work, even volunteer work. There are things I could volunteer for, but I'm not sure I would be able to follow through, so I don't.

I slept more last night, but still nothing approaching straight through. No choking, though. I think the antibiotics are kicking in.  I sure hope so. I have been so tired today. If I sit still, I fall asleep.  In the car. On the couch. At the table. Thankfully Lesley and Elaine did the hard work with pricing the Rite Lite order and sorting through Haggadot.  All I had to do was give some croaky input and nod. The Dynavox, while a very cool piece of equipment, is not all that effective.  Too loud for some settings, not loud enough for others. Slow. Sadly the Magnadoodle is more useful much of the time. Some of it is that I need practice and I still need to do some customizing. I certainly need the parental commands added, i.e. "Get your pajamas on," "Do your homework," and "Don't use that tone of voice with me."  It is somewhat less intimidating in the flat robot like voice.

It yet another desperate attempt to help me feel better, and at Aura's suggestion, Kelly made chicken soup tonight. I hope it works! My serving got some extra celery seed and turmeric as I can still use all the anti-inflammatory action I can get.  I tried the recommended ruby red grapefruit at lunch.  That did not sit well at all.  Some things aren't too bad to burp up as at least I get a little taste, but grapefruit is not a flavor I want hanging around.

The birthday party is finished. Karina is back to school. There is gardening to do, as I feel able, but mostly it now becomes all about me. How are we going to treat this? How effective will it be? What will the side effects be? How adaptive am I?

Serafina stopped by the shop to see me and give me a much needed hug.  I have never spoken a foreign language fluently, so it is interesting that she and I have our own language. Sisters in tonguelessness or something like that.  She is currently doing the oxygen chamber to help her heal.  She has been quite a blessing even if this is a club no one else wants to join.

I feel the same about the Facebook groups. I don't know any of these people personally, yet they cheer for me, encourage me, and give me good advice based on their own experiences with this disease. I almost laughed out loud about a recent discussion about tongue cramps.  I used to get those horribly and I hated them.  The doctors always looked at me like I was crazy when I asked about them, but clearly they are common among oral cancer patients.  It would have been nice to know, and to have been able to try some of the suggestions, when I still had my tongue.  If you have a medical malady, even if it doesn't give you any problems, I highly encourage you to see if there is a Facebook group. It is like getting medical advice from all over the world.

Hoping for more sleep, less apnea, again tonight. Looking forward to Mia working some magic again tomorrow so maybe I could lift my head without it feeling like my muscles are being torn from my face. Dreaming of the day when just getting dressed doesn't feel like an accomplishment.

Until tomorrow...