Slow and steady

I thought I'd give you a quick update. I'm improving every day. While my port site is still sometimes slightly sore, I've almost weaned myself off all pain medication and I can move around freely, albeit a bit slower. I still tire easily and I'm a little dizzy sometimes, but my situation has vastly improved since Tuesday.

My home care nurse brought me some little red caps (for lack of a better word) on Friday to put over the port and drainage tube. Now I can disconnect myself from the drainage equipment, which is incredibly freeing. Even though I was only tethered for a few days, it's very inconvenient to drag everything around with me. I can't even imagine those who must be hooked up to a drainage bag all the time!

It also means I can shower! Aaahhh! While I was washing my hair in the kitchen sink and taking very thorough sponge baths, there is nothing like the feeling of water coursing down my body to make me feel clean. It's one of those things I take for granted every day. (Of course, I miss the hot tub too, but that's a luxury rather than a basic activity.)

Being untethered also prevents painful accidents. Yesterday morning, I was getting a bowl for some cereal. I turned to walk across the kitchen but my tubing got caught on the drawer handle and I yanked on the port. Even though the experience ended up being more scary than painful, I burst into tears. I was terrified I'd yanked the pigtail out of my belly (even part way) and I'd have to go through a repair job or the entire experience in a different location all over again.

With the red caps, I can connect to the paraphenalia to drain a couple times a day. If I do it at home while working on the computer (like right now) or watching TV, I don't have to subject anyone except my family to the experience.

Michael is awesome and helps in any way he can. He changes my dressing and moves the drainage bag around (Yes, I named it Wilbur, but it turns out I never use that name. I thought it might be cute, but I just call it "the bag." Oh well.)

When the kids came home from their grandparents after I got the pitgail, I asked them if they wanted to know about the procedure and what it meant. Noah immediately said he didn't want to see the port. When I was draining yesterday morning and carrying around the bag of ascities, he told me it was "nasty." He wants nothing to do with any of it. Tara wanted to see the tube and isn't squeamish at all. I have very different kids.

I've been told I can drain up to 2L a day, but I'm only getting between 500 to 1,000 mL a day. But if you think about it, if I was accumulating that amount in my abdomen daily, I'd be sporting a giant, very uncomfortable abdomen yet again. So it's good I can siphon off the ascities while I (not so patiently) wait to hear about the clinical trial.

Hopefully this coming week, I can start moving in the direction of treating this disease rather than just managing its by-product. But I am thankful I can manage it by draining off the ascities rather than continually filling up and then being drained via the long needle. That was no fun whatsoever. None of this is ideal, but I often remind myself, it could be worse.

Tina