Seeking normalcy

Despite the fact that I still have an upcoming PET scan hanging over my head, I’ve been working to get my life back. I know it will never be the same, but I’m doing what I can to try to get back to “normal.”

A few weeks ago, I had my feeding tube removed. I actually could have done it myself, but I wanted the doctor to take a look at the site. Aside from looking like I’d been shot in the stomach (twice because this was my second tube), everything appeared to be okay.

When The surgeon walked in the room to take the tube out, the first thing he said was, “You’ve put on weight.” I must have looked horrified because he quickly followed up with, “I mean that in a good way.” The truth is, I’m at a normal weight now and am trying to stay there, so I’m back to having to watch my calories again. I admit I’ve enjoyed being able to eat ice cream and chocolate with no fear. One of the few perks of cancer.

I’m still working on weening off the narcotics. It took me three weeks to finally get a pre-authorization for the low-dose OxyContin pills, but I finally got them this week. So far, so good. I don’t feel like I’m on drugs, and I haven’t had to use any of the liquid Oxycodone since I started on the pills. But I’m tired most of the time. My instinct is to just stop taking them, but I think I’m going to wait until I see the doctor again. I definitely don’t want a repeat of the withdrawal I went through the last time I tried to go cold turkey.

The chemo and the lack of exercise early on left me a wreck, so I’ve been trying to re-gain my muscle tone, balance and coordination. When I started out I could barely walk a few laps around my pool. Now I’m walking 30 minutes almost every day, although I have to admit it it isn’t always easy.

My balance and coordination have improved some, but I still have work to do there. I’ve stopped bumping into things (mostly), but I still tend to veer off course, and I almost toppled over while brushing my teeth the other day. I also have a hard time with stairs. I can do them, but I feel like a little old lady when I try. I don’t have stairs at home, but have been taking them as often as possible, and things are beginning to improve. I keep saying I need to find a good yoga class on TV, but haven’t managed to find the time to do it.

The last time I saw my ENT, he told me the radiation was probably  going to damage my teeth over time. That really ticks me off because I’ve spent a ton of money and hours in the dentist chair to have nice teeth (I knocked out a front tooth right after it came in; it’s caused me trouble ever since). So I went to the dentist to see what could be done. I had an old cavity that needed to be refilled, so I did that. The dentist also prescribed me a fluoride gel to use after brushing. She said my teeth were in good shape as of now.

One of my biggest obstacles in my quest for normalcy is my low sodium and the accompanying Gatorade. I really want to get off the Samsca and start drinking water again. I saw the nephrologist this week and he finally admitted my SIADH is improving because the cancer cells are diminishing. He agreed to let me switch from 15 mg of Samsca every 3 days to 15 mg every 4 days. I also get to go down from two to just one blood draw per week. That’s a big deal for me because I recently got off home health, so now I have to make an appointment at the hospital every time I want my blood drawn (I had someone coming to my house to do it before). The hospital is a 20-30 minute drive each way, depending on how many stop lights I hit.

The nephrologist also said I could drink a small glass of iced tea and one bottle of Propel Electrolyte Water each day. It’s so nice to have something besides Gatorade again! And being able to drink something with no calories is a huge bonus.

That’s about all I’ve got for now. Thanks for sharing my journey with me. Your prayers and support are much appreciated.

Julie

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