I have an obsession with red meat and waffles (not together - ewwww). Realize I haven't mentioned that before, but I want to eat waffles every day, and red meat is always on my mind. I've never been that big a red meat eater, so this is weird. I'm just going ahead and eating what my body wants. I can worry about the weight later....because there will be weight to worry about, for sure!! I'm just hungry all day, and eating something makes me feel better, almost as if I'll get a little queasy if I don't eat.
I have cramps in my calves several days after chemo each time. Just realized the connection today. Not bad, just makes me need to stretch them a bit. Strange side effect.
No prednisone today - finished it yesterday for this round, and I'm happier already.
The fatigue hump was much much bigger this time around. I felt energized and did a lot of stuff on Friday, but Saturday and Sunday were rough and I couldn't manage to do much of anything. I went for Reiki on Saturday at the hospital (free!) and that was really much more lovely and relaxing than I'd anticipated (already scheduled for next round). Sunday I went to church, and couldn't even stand for the hymns at all, and left as soon as church was over without saying a word to anyone. VERY strange for me!
There's a strange thing around the whole baldness/hat/wig culture. I've talked to a few people about it. I wear a hat almost all day. I take it off if I'm alone (or just with family) but I feel awkward in front of ANYONE (except Robbie) without something covering my head. I still have a bit of fuzz on my head (in a funny combination of colors). I'd expected to be shiny bald by now. But regardless, I feel like I have to keep my head covered to protect other people from having to see the evidence of my experience. I know what I'm going through. But other people don't need the smack in the face of it, y'know? I find myself feeling apologetic a lot about my baldness, my fatigue, etc. Why do I feel the need to protect everyone else from my experience? I'm not ordinarily that nice of a person. HAHA It's strange. As it gets hotter out, and in the DR (when I'll still be just fuzzy), it's going to be hard to have a hat on ALL the time - HOT. I am going to have to figure that out in a way that makes me feel comfortable...if that's possible.
I'm going to go eat waffles now. I deserve them.
Tuesday, March 19, 2019
Friday, March 15, 2019
HALFWAY THERE!!!
I had my third of six rounds of chemo yesterday. Met with Dr. Scola first. Had bloodwork. I'm low on white count, low on neutrophils - all expected with the "extensive bone involvement." Nancy (my sister) hates that he keeps repeating that, because it's depressing. I sorta feel like it's good to hear it, because it means the RCHOP is worth it and my bones will be free of crap when it's over.
The day went smoothly and quickly. 8:45 finger prick (big ski mitten and handwarmer did the trick - no finger prick residual pain today - and it make people laugh, which is my goal in that place). 9:00 meeting with Dr. Scola (which means 9:20, which is early for him!!!). We talked about my side effects (fatigue and stomach stuff like hunger and bloating - minimal). We talked about my weight gain (Frank the port is making me eat much more than I'm used to...) - 6 pounds...so far. He asked if I'm upset about it. I said, "Fat and bald is the way it is for me." He finds me funny. You should remember that. I'm funny. We are scheduling a PET scan for two weeks from now, assuming insurance approves it. If they don't, a CT scan. I'd prefer the PET. They're easy and I enjoy the music. HAHA Seriously - it will show the bone changes better, but it is an easy scan, as scans go.
Then we went back to the waiting room, and when they called my name, I did stand and say "YAY" although not as loudly as that one time.
I was lucky enough to have Val as my nurse again. Same one from last time. She's young and funny and irreverent, and was thrilled to hear that I'd continued to call the port "Frank," as it was her idea. I told Nancy that I'm enjoying these little relationships that you develop with the staff there. She said, "Well, that YOU do. I wouldn't know anything about any of them." You know, I'm normally an introvert. The people reading this might be saying, "WHAT????" But basically, as comfortable as I am with public speaking, performing, teaching, or whatever, what refills my tank is time alone. Extroverts are rejuvenated by time with people. So yes, I'm an introvert. But I went into this process knowing I'd need to make it more uplifting than isolating. So I'm writing a blog, and leaving it open to whoever wants to read it. I'm not trying to hide the fact that I'm bald (hats over a wig - also easier because I don't have an office type of job). I'll tell whoever asks. (People don't ask - they avert their eyes.) But when I'm in that infusion center, I am trying to make people laugh. It's usually not hard (because I'm funny, remember?) I've managed to make that kind of connection with two of the five chemo nurses I've had, and the phlebotomist and I can chat about stuff now. Why not brighten a day in a place where things aren't all that bright sometimes?
Tim is visiting this week because "need to work from home because my mother needs someone for chemo this week." Of course Nancy is here with me, but it works! He came to the center and spent most of the time there with us watching me be silly in general, and dopey on Benadryl. And he got to see me get the red stuff I hate.
The infusion starts with premeds. Tylenol, steroid, benadryl, fluids. That takes about an hour. Then the Rituxan, which is now in a different form and is a shot into the belly. The needle stick isn't fun, but the shot takes about 15 minutes, and Rituxan took 3.5 hours, so WELL worth it. There was redness in the area, and some soreness, but it went away within a few hours. Then the red stuff. Ick. Orange ice cubes for 1/2 hours freezing the heck out of my mouth, but doing the job of warding off immediate mouth sores. The red stuff takes 1/2 hour and is given directly by syringe into the port, so Val and I had lots of good chat time in there. HAHAH After that they do a quick syringe of the H in RCHOP (whatever that is) into the fluid line. Then they hang the C bag and that takes an hour. We ate lunch during the C bag and finished just about when it was finished. Out of there at 2ish. Last chemo we were there 8:45-4:30. This was so much better. There are some pauses in the midst of things waiting for the meds, etc. But it was all smooth and easy, given that they're shooting toxins in to your body. I reread Nancy's blog from her breast cancer treatments 11 years ago and she said something like, "Then comes the Cytoxin (the C). Why would they have "TOXIN" in the name of the drug that is curing you?"
Fatigue and some stomach bloating are my primary side effects - and not sleeping. That's the stinking Prednisone. Had a funny talk with Dr. Scola about that prednisone and everything it does to you. He said he was on it for an inner ear thing and one day was on the phone with his wife and was just yelling at her, and it felt FANTASTIC!!! HAHA he's not the yelling type at all. It was 'roid rage. I hope she thought it was fantastic. ;) He said he knew it was the prednisone and not him, but he didn't care. My response is more hyperness and emotional swings. I haven't yelled at anyone....yet!
To that's the long story made longer about my day of chemo. Oh, and another foot massage! YAY!!!
The next few days will be hard. Then I'll have a few days of upswing. Then I'll feel good for several days. And then we're back at it April 4. And then I'll be 2/3 finished!
The day went smoothly and quickly. 8:45 finger prick (big ski mitten and handwarmer did the trick - no finger prick residual pain today - and it make people laugh, which is my goal in that place). 9:00 meeting with Dr. Scola (which means 9:20, which is early for him!!!). We talked about my side effects (fatigue and stomach stuff like hunger and bloating - minimal). We talked about my weight gain (Frank the port is making me eat much more than I'm used to...) - 6 pounds...so far. He asked if I'm upset about it. I said, "Fat and bald is the way it is for me." He finds me funny. You should remember that. I'm funny. We are scheduling a PET scan for two weeks from now, assuming insurance approves it. If they don't, a CT scan. I'd prefer the PET. They're easy and I enjoy the music. HAHA Seriously - it will show the bone changes better, but it is an easy scan, as scans go.
Then we went back to the waiting room, and when they called my name, I did stand and say "YAY" although not as loudly as that one time.
I was lucky enough to have Val as my nurse again. Same one from last time. She's young and funny and irreverent, and was thrilled to hear that I'd continued to call the port "Frank," as it was her idea. I told Nancy that I'm enjoying these little relationships that you develop with the staff there. She said, "Well, that YOU do. I wouldn't know anything about any of them." You know, I'm normally an introvert. The people reading this might be saying, "WHAT????" But basically, as comfortable as I am with public speaking, performing, teaching, or whatever, what refills my tank is time alone. Extroverts are rejuvenated by time with people. So yes, I'm an introvert. But I went into this process knowing I'd need to make it more uplifting than isolating. So I'm writing a blog, and leaving it open to whoever wants to read it. I'm not trying to hide the fact that I'm bald (hats over a wig - also easier because I don't have an office type of job). I'll tell whoever asks. (People don't ask - they avert their eyes.) But when I'm in that infusion center, I am trying to make people laugh. It's usually not hard (because I'm funny, remember?) I've managed to make that kind of connection with two of the five chemo nurses I've had, and the phlebotomist and I can chat about stuff now. Why not brighten a day in a place where things aren't all that bright sometimes?
Tim is visiting this week because "need to work from home because my mother needs someone for chemo this week." Of course Nancy is here with me, but it works! He came to the center and spent most of the time there with us watching me be silly in general, and dopey on Benadryl. And he got to see me get the red stuff I hate.
The infusion starts with premeds. Tylenol, steroid, benadryl, fluids. That takes about an hour. Then the Rituxan, which is now in a different form and is a shot into the belly. The needle stick isn't fun, but the shot takes about 15 minutes, and Rituxan took 3.5 hours, so WELL worth it. There was redness in the area, and some soreness, but it went away within a few hours. Then the red stuff. Ick. Orange ice cubes for 1/2 hours freezing the heck out of my mouth, but doing the job of warding off immediate mouth sores. The red stuff takes 1/2 hour and is given directly by syringe into the port, so Val and I had lots of good chat time in there. HAHAH After that they do a quick syringe of the H in RCHOP (whatever that is) into the fluid line. Then they hang the C bag and that takes an hour. We ate lunch during the C bag and finished just about when it was finished. Out of there at 2ish. Last chemo we were there 8:45-4:30. This was so much better. There are some pauses in the midst of things waiting for the meds, etc. But it was all smooth and easy, given that they're shooting toxins in to your body. I reread Nancy's blog from her breast cancer treatments 11 years ago and she said something like, "Then comes the Cytoxin (the C). Why would they have "TOXIN" in the name of the drug that is curing you?"
Fatigue and some stomach bloating are my primary side effects - and not sleeping. That's the stinking Prednisone. Had a funny talk with Dr. Scola about that prednisone and everything it does to you. He said he was on it for an inner ear thing and one day was on the phone with his wife and was just yelling at her, and it felt FANTASTIC!!! HAHA he's not the yelling type at all. It was 'roid rage. I hope she thought it was fantastic. ;) He said he knew it was the prednisone and not him, but he didn't care. My response is more hyperness and emotional swings. I haven't yelled at anyone....yet!
To that's the long story made longer about my day of chemo. Oh, and another foot massage! YAY!!!
The next few days will be hard. Then I'll have a few days of upswing. Then I'll feel good for several days. And then we're back at it April 4. And then I'll be 2/3 finished!
Tuesday, March 5, 2019
Random Thoughts #1
#1...because I'm sure there will be a #2...
When you're bald, and you sleep on your side, your ear sticks to the side of your head. Then when you roll over, your ear will suddenly pop free. Or is it just me? HAHA I'm wearing a really lightweight beanie when I sleep, and it's solving the problem.
Nose hair is important. You don't realize that until you lose a lot of it. I think that we spend most of our adult lives trying to keep our nose hair from being visible.... Nose hair filters stuff going into your nose. Without it, there's a lot of random dryness/wetness/sneezing. I read a blogpost someone wrote about nose hair, and it was hysterical. Appreciate your nose hair. It's important.
Even when you think you are 100% positive about what you've decided to do (the chemo), doubts will creep in where you don't expect. I've been going through a bit of an emotional thing about one of the chemo drugs (the O in RCHOP). It's red. It's weird. You have to eat ice chips the whole time you're getting it or you'll get mouth sores. They infuse it by hand, watching for blood to come back through the port tubing. It's a little freaky. So within the last week or so, I started associating ice (and water, unfortunately) with that stuff. The thought of drinking water made me a little queasy. I went to a therapist today and went through a process called EMDR (it's an amazing technique). I'm drinking water again. And, just in case, I'm planning on doing a flavored ice chip next week....a flavor that I don't care about hating for the rest of my life. I think orange.
Babies live in the present. They cry if they're unhappy. They stop if the source of unhappiness goes away. Robinson is happy unless he has a reason to be sad. That's why being with him every day is helping me so much. I'm in the present with him all the time. As adults we have to think about the future and we have to deal with the past, but if we can live in the present whenever possible, we can just be happy unless there's a reason to be sad. Yay for my therapy baby.
When you're bald, and you sleep on your side, your ear sticks to the side of your head. Then when you roll over, your ear will suddenly pop free. Or is it just me? HAHA I'm wearing a really lightweight beanie when I sleep, and it's solving the problem.
Nose hair is important. You don't realize that until you lose a lot of it. I think that we spend most of our adult lives trying to keep our nose hair from being visible.... Nose hair filters stuff going into your nose. Without it, there's a lot of random dryness/wetness/sneezing. I read a blogpost someone wrote about nose hair, and it was hysterical. Appreciate your nose hair. It's important.
Even when you think you are 100% positive about what you've decided to do (the chemo), doubts will creep in where you don't expect. I've been going through a bit of an emotional thing about one of the chemo drugs (the O in RCHOP). It's red. It's weird. You have to eat ice chips the whole time you're getting it or you'll get mouth sores. They infuse it by hand, watching for blood to come back through the port tubing. It's a little freaky. So within the last week or so, I started associating ice (and water, unfortunately) with that stuff. The thought of drinking water made me a little queasy. I went to a therapist today and went through a process called EMDR (it's an amazing technique). I'm drinking water again. And, just in case, I'm planning on doing a flavored ice chip next week....a flavor that I don't care about hating for the rest of my life. I think orange.
Babies live in the present. They cry if they're unhappy. They stop if the source of unhappiness goes away. Robinson is happy unless he has a reason to be sad. That's why being with him every day is helping me so much. I'm in the present with him all the time. As adults we have to think about the future and we have to deal with the past, but if we can live in the present whenever possible, we can just be happy unless there's a reason to be sad. Yay for my therapy baby.
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