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Posts Tagged ‘nausea’

Another week, another Tuesday. Dad had an early appointment, so I’ve been here alone with mom for most of the day. No one was sure whether or not the CNA was supposed to come sometime (they’re moving her up to four days a week, but I guess no one had said which four), but no other visits were scheduled. It’s kinda nice.

I went in to see what mom wanted for breakfast and noticed that she had thrown up during the night. There was dry, crusty stuff that looked mostly like blood to me all down the front and side of her shirt and on the pad underneath her. I did my best to change her shirt (watching me try to take the old one off would have been hilarious had it not been so sad…it’s very difficult to change someone’s shirt when she’s just lying there), and I put a clean pad over her old one while I called to see if the CNA was indeed coming (if not, I’d go ahead and try to change everything). After a few rounds of phone tag with hospice, the CNA called to say she was on her way.

Of course, she came right when I have my weekly (phone) meeting with my manager. The one appointment I have all day. So there’s me with my cell phone pinned between my shoulder and ear, talking with my manager about a matter of procedure, kneeling in the middle of mom’s bed, and helping the CNA slide mom in and up on the bed. Talk about multi-tasking.

Mom’s always exhausted after nurse visits. I’m sure it’s because she gets manhandled and has to expend a lot of her energy. I was trying to get her settled and get her some food since she said she felt nauseated again. She’s on a two-bite kick: two bites of breakfast, two crackers, two bites of sandwich, two spoons of yoghurt or smoothie, two sips of water. I wonder if she’s aware. But that’s all she’ll take these days. Anyway, I got her some crackers, and she didn’t seem to like the way they stuck to her teeth, so I figured it would be a great time to brush her teeth, especially since I’d forgotten to do it earlier. Bad caregiver.

I’ve been working with mom for MONTHS about not swallowing toothpaste. Apparently this is something she’s done her whole life, I don’t know. But the first time I had to help her to the sink a while back, I noticed she wasn’t rinsing and spitting. She was under the assumption that if it’s safe to put in your mouth, it’s safe to swallow. I know she never reads ingredient lists, but toothpaste is not your friend! So now I make a big deal out of “rinse and spit!” I brushed her teeth for her (awkward if you’ve never done that before; all previous times, she’s done it herself) and held up a cup. I must have said over a dozen times, “rinse and spit; please don’t swallow!” I don’t know if she couldn’t understand or was just in the habit of swallowing, but she swished the water around and swallowed. Ugh. I made her rinse and spit anyway, though it was very hard for her to figure out how to do it. When we were done, I asked if she needed anything. “Yeah,” she said, giving me a nasty look. “I want my life back.”

Nice.

She was sure she had to be somewhere for bridge, either at church or her friend’s house. It took some convincing for her to believe she didn’t have to go anywhere. I put on the TV and tried to get some work done. When I went back, I asked if she was okay…she looked very confused. She said she was confused. I asked what about. She told me that it was like she had two lives, one on the TV that was causing her to miss the other. I turned off the TV and asked what she wanted to do. She said sudoku or read, which is what she always used to do, so I got her the sudoku book and a pen that writes easily.

Boy, that didn’t go well. I don’t know what she was doing, or what she thought she was doing. She started by putting a 1 in a box that already had a 1, then told me I was wrong when I told her she couldn’t do that. So I just agreed and let her do her thing. I checked back on her a few times, and there were some scribbles in a few places, but no numbers. Every time I walked by the room, though, she was staring at it intently. I wish I knew what was going on in her mind.

When I walked by and she was asleep with the book in her hand, I took it away. I got her two bites of lunch, and then she agreed to read a book. She’s been in bed reading for a while. It’s really a small miracle. She hasn’t read, to my knowledge, for a long, long time. It used to be her favorite thing to do. I hope she’s getting some enjoyment out of it.

I also hope she’s getting some sunlight. I opened the blinds in her room. Poor dad…he loves birds, and he said the last time he opened the blinds, a bird flew into the window and killed itself. He just can’t win. (And, yes, he even has those decals on the windows that are supposed to tell the birds that there’s glass there.)

I’ve been doing a little better these past couple of days myself. I went to yoga, which I haven’t done in ages, with an instructor I haven’t seen in months. She was my first real personal trainer. She’s a very kind soul, and I was hoping that yoga with her might help me remember to treat myself with kindness and compassion. I spoke with her a bit after class, and it turns out when she was 16, she lost her mother to cancer. They had a four-month warning. It’s so sad, how many people this disease touches. It seems like everyone. I hope I can make yoga a part of my regular routine. It’s another thing I can’t afford, and I’m horribly inflexible, but it’s a nice way to touch base with what’s going on with myself. Just like meditation, it brings a lot of crap to the surface that can then be scraped away. I hope.

So here’s to small miracles, two bites, and two lives. I don’t know how much longer we’ll have with mom, but I hope she can spend that time doing what she loves to do.

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Good news and bad news.

Bad news is that mom stopped responding to the chemo, so her tumors are growing again. The doc put her back on Tarceva…I think she started yesterday. She’s already feeling more nauseated, which I’m sure is fun. I hope it works for her. I’m not sure what’s next.

Good news is that I’m moving back to NC! I’m super excited to be closer to my parents. I hate being so far away. A few years ago, I decided that I wasn’t going to do anything out of obligation because I only have one life to live, so if I want to get a job in California or Swaziland, that’s what I was going to do. Now I just feel like I don’t want to squander the time I have left with my parents. I don’t know how much fun being at their house will be just because I’m going to have an awful commute to work and not much pantry space, but I do know I’m going to be happy to be able to see them every day.

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It’s been a long time since I’ve posted, which is mainly because there’s not much new to report.  Mom saw my endocrinologist and has been on the Cytomel for a while, and that along with her new nausea medication are working okay for the time being.  She’s had some issues with severe dry skin, especially around her finger- and toenails, and her oncologist told her to stop the Tarceva for a few days.  She took a 5-day break, and that seemed to help.

We’re leaving for Vegas a week from today, and I hope she has a good time.  I called ahead for a wheelchair for the airports so she won’t have to walk much there, but I do worry about how she’ll do in the expansive hotels.  We planned this trip before we knew about the cancer…and it’s definitely a trip more for me and dad than for her.  Vegas isn’t her kind of place, though I really don’t understand why.  Anything you want to do anywhere in the world, you can do in Vegas.  I plan on staying in the gym/spa/pool areas most of the day, and I figured that would appeal to her too, but I don’t think she’s looking forward to it.  Hopefully dad will at least enjoy it.  🙂

I also worry about her new nausea medication.  From what I’ve read about it, it’s got some serious side-effects.  Her doctors are saying that it’s a result of a high dosage over a long period of time, and I hope they’re right.  I hate that it’s always taking a pill to cure a symptom caused by a pill to cure a symptom caused by a pill, you know?  That’s what stuff like macrobiotics is for, in my mind…addressing the root cause, not the symptoms.

Anyway, I hope everyone enjoys the remainder of the summer!  School starts back for me on August 26th, so I don’t expect to have any free time after that date!

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It’s been a beautiful weekend up here in WV, and I think it’s been just as nice down in NC.  The humidity’s been keeping itself busy elsewhere, and that’s been a lovely break.  I ran a 10k in Morgantown on Saturday, the Spirit & Breath Challenge, which raises money for lung cancer research and awareness.  It’s only my second 10k, but I shaved 4 minutes off my time from two weeks ago, which makes me feel like I’m doing well…especially because it was an extremely hilly course!  And maybe I ran a little faster because I was thinking about mom.  🙂

Mom did get in to see my endocrinologist, Dr. Weir, and Dr. Weir put her on Cytomel (T3), which is what I thought was going to happen.  Dr. Weir said that mom’s beta blocker would prevent any heart-related side-effects.  I’m sure that will help mom with her energy levels.  Mom said they were also scheduling a thyroid scan to make sure the issue wasn’t related to cancer, but I figure they would have seen that in a PET scan by now if it were there.

Mom’s still tired, but she thinks that might be the result of her new nausea medicine.  She doesn’t feel nauseated anymore, but she’s so tired that she feels like she needs a nap by the early afternoon.

I know that things could be a whole lot worse, but it sure would be nice for mom to feel like her old self again.  She’s a driven, focused, active lady, and I know these road blocks aren’t making things easy for her.

Anyway, I hope everyone has a lovely Independence Day holiday!  I will definitely be enjoying mine!

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TSH

I’m sorry to report that mom’s progress has stalled a bit…not in terms of the cancer (that we know of), but she’s still stuck with nausea and low energy.  She said her doctors had an issue with miscommunication regarding her blood thinner over the weekend, but hopefully that’s working itself out, and she’s starting a new nausea medication tomorrow.

Mom and I both have a condition called Hashimoto’s Thyroiditis, which is an auto-immune disease where the body basically eats the thyroid, or at least that’s how I’ve always heard it explained.  Mom’s mom had it, too.  It’s something I’ve lived with since I was three, and I rarely have any symptoms.  Sometimes I feel extremely tired and have trouble getting up and staying awake all day, and then I know it’s time to have my blood work done…it always reads that my TSH is high, which means I need more of the T4 hormone.  “Normal” TSH ranges vary from doctor to doctor.  Most people say 1-3 is good, but from all of the research I’ve done, I’ve learned that Hashimoto’s patients should say on the lower end of the range…supposedly it slows down the deterioration of the thyroid.  At any rate, through life experience, I know that when I feel very tired, my TSH is usually around 2.  Some folks would call that “normal,” but I feel great when my TSH is between .2-1.  (There’s a danger of it harming you if it drops below .01.)

ANYway, the point of all that was to tell you that something finally clicked in mom’s head, and she thought that maybe her low energy was related to her thyroid.  Turns out her TSH is 10.4!!  Her docs think the radiation might have knocked her thyroid off kilter.  I tell you what, if I can hardly get out of bed when my TSH is at 2, I can’t imagine how mom’s feeling!  I give her props for even getting out of bed at all, much less carrying on with something of a normal routine!

So now the problem is that it’s very, very difficult to get appointments with endocrinologists, especially as a new patient.  It usually takes me about three months, minimum.  I was hoping that someone could talk their way into an appointment sooner, but it appears that mom’s liaisons at Duke haven’t yet been able to pull any strings.  I really liked my endo in Raleigh, and she’s located directly behind all of mom’s other docs at the Duke Raleigh location, so it would be great.  But they’re saying the soonest they can see her is in September!  Yikes!

I’m hoping she gets some better news.  She’s already upped her medication, but it takes a while to kick in…Synthroid (levothyroxine), which is T4, takes a while to turn into T3, which is what the body needs.  They do make synthetic T3 (Cytomel), which is like an espresso shot, but I took it for a little while and it permanently messed up my heart so now I can’t imbibe caffeine at all without heart palpitations.  And there’s Armour, which is a T4/T3 mix made from pig thyroid, but I felt bad about that since I don’t eat pig to begin with.  The point is that there are a lot of options that general docs don’t always know about, and I think she’d do well to speak with an endo.

Sending positive thoughts!!

(PS:  Happy Birthday to the greatest dad in the world!!  Love you, daddy!)

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