November Update Series: Physical changes

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Physically, the cancer updates we have to pass along are minimal, since V doesn’t have many scans or appoints these days. We see outward indicators that the cancer is growing, such as the bump (tumor) on her cheekbone looking bigger lately, but can only assume from mental sort of changes that the brain tumors are growing (as we obviously expect). Tracy, and sometimes the other hospice nurses, continue to come each week for blood pressure sort of checks, and at times to adjust medicines, to assist in Vanessa’s sleeping or try to combat some recent aggression/anxiety. We also have gotten the results of the cancer panel genetic testing – it came back all normal, negative for any known cancer-causing or -related mutations.

Pretty Vanessa: she asked Christina to take this picture because she was particularly proud of how well her outfit and jewelry matched. :)

Vanessa is by no means your usual 31 year old in running around or anything, but she is still definitely walking and doing steps and her feet are getting her where she wants to go just fine. She had her rings cut off recently as they were getting snug, and the jeweler was surprised she hadn’t been in more discomfort from how tight they were. We guess that V’s pain sensors aren’t quite firing right, which is one thing going awry in that body of hers that we are SO VERY ABSOLUTELY thankful for! I believe she should be in much more pain than she seems to have, and I am so grateful for her not feeling that.

It does seem like, in a departure from the previous ravenous feelings V had, she is now less hungry. Meals are still enjoyed and normal (or sometimes still bigger) size, but if left to her own devices, she also often forgets to eat. Her weight gain has slowed, which a month or two ago would have made her very happy, but is not something that really is on her radar any longer. Her hair is growing, which does still make her happy – and while she styles it in a spiked out way I’m not sure Vanessa v1.0 would have approved of(!), Vanessa v9.0 now likes it very much. :)

Sleep has been elusive for V of late. Unless she is utterly exhausted, it’s like she cannot shut down her brain from the low level processing it’s constantly doing. She is non-stop seeing small OCD-style things that none-the-less need her immediate attention – putting that cup away, smoothing the sheets, centering a stack of paper so they perfectly align, locating and trimming loose strings off fabric, etc. This makes it really hard for her to nap, and she really doesn’t even want to try to relax during the day, either. :P Which would be fine if she then slept at night, but that’s not happening consistently recently either (4:00 a.m. is a common fall asleep time), so we’re trying a new sleep aid medicine with her and really hoping that works. I always imagine how hectic it must feel in her brain to have that much noticing and busy work going on, and not being able to get a break from it. Additionally, even when she does finally fall asleep, she gets up every hour or so to pee, so even the sleep she does get is not any long block of good quality REM time.

I took this sequence of pictures over several minutes. V had found a sticker sheet that had a few stickers curling up, so she wanted to sandwich them between cardboard to keep them down. She spent probably 10 minutes arranging the stack and lining everything up just so.




This is part 2 of a series of update posts for November. (You can start here to read in order.)

Tomorrow’s topic will be: cognitive changes.

We’ll add one post a day for the next few days until we’ve covered everything, so please stay with us through them all!

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