My Husband, My Life, My Love, My Family, My Cancer
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just on a sleep tangent.... I started listening to a new podcast. It's called "Huberman Lab" and it's by a neuroscientist. It just started. First episode was a general overview of brain and the nervous system but he will be talking about how to apply latest research to life stuff - learning, memory & sleep.
The whole second episode is on sleep. Easiest thing he suggested was to be outside near sunrise (even if it's several hours after), and near sunset. Shouldn't be through a window, shouldn't be wearing sunglasses. Don't stare at sun, just be outside, lift your face, let all the brightness (or coming dimness at dusk) be seen by your eyes. The light frequency given by the sun varies at sunrise and sunset (differing compositions of red and blue in sunrise and sunset). This light information is transferred to the pineal gland which governs the sleep/wake cycle.
There was tons more there about other things but this was the simplest and he says evolutionarily the oldest thing. Our eyes were first light sensors to sense day versus night. Actual vision came way later (we know this from evolutionary fossil records). So go outside for a couple minutes, even on a balcony, or even leaning out an OPEN window....sometime close to sunrise and sunset and over the course of a few days he says most people will start to reset their clocks.
& he's not a melatonin fan.... though I do use it occasionally at 3 mg.
I'm actually going to re-listen to this episode to make sure I didn't miss things. Episode 3 just came out yesterday I think.... I think this one starts going into learning.
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I've never tried Melatonin....I always think I take enough medicines. I don't want to add on more things to buy and take. But I am Going to ask about it. Once I fell asleep, I slept great. Other problem is, I drink too much water. Then I have to go. Wake up! Sometimes twice a night. But I'm so thirsty, I can't not drink. I love sleep. It's my only peace away from life. I'm sure we all feel that way. I'd like to sleep now actually. I wish during the day the fatigue wasn't so bad that I had to lay down during the day. Sometimes I sleep. Most times I just rest. My body just feels like it needs it. That's why I don't really do too much at all. (Covid big part of that as well) I'm
Such a homebody. Maybe I'll do some more sewing. That I enjoy ! I only listen to music when I’m alone, some songs make me cry. But i understand the “need” to cry feeling. Sometimes I don’t know what to listen to. I need a new playlist.
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Moth-That's very interesting about the sleep recommendations-being outdoors at sunrise and sunset. I find that I sleep well most nights if I have spent time outdoors during the day-for me its usually in the afternoon. Nights I have trouble sleeping are when I have spent the whole day indoors. I'm going to go out for a walk now. Micmel, maybe experiment with adding a daily walk (or maybe even two short ones am/pm) to your routine to see if that helps? I have to get up a couple of times during the night like you but if I have tired myself out a bit outdoors, I can usually fall right back to sleep. Just hope you can find something that works and doesn't make you feel sluggish during the day.
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Santa and Moth, Interesting info on sleep. Thx for sharing. I would never have thought of being out around sunrise and sunset. Lately the sun has been hard to spot here in Ohio but today is bright and pretty. The types of daylight would probably still be different even on a cloudy day. DH has more awake time than I do. I plan to give him some of these suggestions.
Also Moth, it’s been a while since I played any music loud! I used to put something on to jumpstart my energy for cleaning on Saturdays or when home alone. Paul Simon’s Graceland and REM were a couple of my faves. I need to do that again.
Mel, getting up for the bathroom is annoying. I try to hold off once I get “the message” but it never helps. Maybe you could try to cut your water intake a couple hours before bed? It might at lessen the number of times you have to get up?
I’m sorry for those missing their moms so much lately. I agree with Mara and KBL that I’m glad my mom wasn't here for my cancer dx. She was a worrier even when nothing was wrong and I’m not sure could have taken more worry. It’s been 7 years that she’s been gone, and I still think I see her in stores when I catch a glimpse of certain little white haired ladies. It’s kind of nice actually.
Karen and Booboo, and anyone else with scans or treatments this week, thinking of you. 🌺
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One thing I definitely know wherethere is a difference. If I get up in the middle of the night and look at the time, I’m done. I’ll be awake at least two hours. If I don’t, nine times out of ten, I fall right back to sleep.
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Hi all.
Good conversation about sleep. I think the out in sunshine thing that moth posted sounds good. Natural versus pills. Hopefully Mel that you can find some tricks to help you. I fall asleep fast. My problem is the aches and pains, toss and turns that interrupt my sleep. And I usually get up twice to pee.
Well today has been pretty quiet again. I called my friend that her DH passed. She is doing ok. She said she called another lady in the church that her husband passed this summer. They cried and talked. That is good that they can connect. I have not been married and I know that being a widow is something I cannot truly understand. So good they connected.
I walked on the treadmill--- 1/2 mile in 18 minutes. Pretty good, I think. I have not been on the treadmill in a few weeks. That is me. I go in spurts. Not every day exercise.
I was thinking, if no Covid, what would I do today. Not much. I want Covid over. But I cannot shop every day. And I do not work anymore. I need to get back into volunteering after Covid. I just feel kind of lost. Like what is my purpose.
Well, a phone call and a walk today. That is about it.
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If I have a terrible time sleeping, I take CBD jelly bean before bed and listen to rain with a subliminal talkdown through my bluetooth earbuds. It is very relaxing and blocks out a lot of outside noise.n
The murder trial was something that was definitely out of left field. On the plus side, I did not see anything and the testimony is just that I found bloody clothes out back, did not see anyone leave it nor did I witness the murder.
Candy, any time moving is a good time. I am glad you were able to do this. Helps a lot.
I walked twice today in the sun and enjoyed myself. I appreciate sun even in the cold weather
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Folks,
Thanks for the pocket duty today! Despite my great fears in getting my first keytruda infusion today, it went very smoothly. I think I just had leftover PTSD from my chemo experiences in 2004 with my first diagnosis, and it totally freaked me out. But the keytruda infusion went very smoothly, and was very easy (only a half hour infusion). Now I just need it to work!
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Yay BevJen! Yeah, immunotherapy is totally different. The side effects - if any come & for many they don't - often come weeks later or slowly develop over time. It's a totally different experience than chemo. I notice this even more now as my chemo & immunotherapy are at different clinics and now on different days of the week. Fingers crossed it trains your immune system well!
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Happy for you BevJen. Hug from here.
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I have come to whine.
I feel utterly flattened. There is nothing I want to do. Getting out of the house has become a chore that I don't battle with anymore. Days and days go by and I just look out into the trees. The phone rings. I don't answer it. I have no energy for people. I am dull, witless, limp, boring, non-existent. I wear slob clothes. There is chicken poop on my snowboots. There are 3 dozen eggs waiting to be washed but I don't feel like it so they sit in a precarious pile, waiting for one of those horrendous accidents where you call the dog to clean it up only to realize your dog will probably die if he eats 3 dozen eggs at once. My hair is stupid and I hate myself. I can barely look at my sagging, wrinkling face. My gut like a beluga whale. My jowls, like a fat bulldog. I don't want to see people and I do't want people to see me.
Hub and i used to go out on the wknds to a fave spot for coffee and a shared piece of pie. But the covid closed. I am SICK TO DEATH of looking at masked faces. This is not my country. These are not people I recognize. I smile at people. No one knows. The HUGE non-verbal part of communication between humans is muzzled, smothered and snuffed behind masks and I am sick TO DEATH of this entire covid shit show. This is contributing to a life that grows smaller and smaller, like the swirls of water just before they get sucked down the toilet. That's how I feel lately, like swirling toilet water.
Wow. I need drugs. Good thing I have some. Thanks for letting me bitch.
I apologize that I am not current with what's happening with everyone. I truly hope that the sun is shining on all of you, wherever you are.
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BevJen, good for you. I’m glad it wasn’t as horrible as you had imagined.
Runor, I’m so sorry you’re feeling this way. I’m sure others will have some sound advice. I have none. I just want to tell you I’m wrapping my arms around you and giving you a hug.
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Runor, sorry you are feeling that way. I can definitely empathize with the lack of energy by times and being limited. I have also gained weight even with all my walking. If I don't walk in the morning, guaranteed to cry about something that somehow bothers me. I am giving up jeans for a while and giving my self a break. I walk outdoors for the fresh air. I do not mask up because where I walk is not bad and easy to social distance. Thinking about taking the bus to a nice park, I would probably mask up there since it can be a little crowded. We will see, I need something to do and no farm or land I live on.
I hope things brighten up soon. I wish you did not look at yourself in such terms, normal to wear whatever you want around the house. Take that part easy on yourself til the day comes you feel like doing more than just the household chores, maybe get to take a stroll with your husband or family outside to forget about covid.
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Runor~I am sitting right next to you looking down at a Buddha stomach I didn't ask for after plastic surgery. My body looks like a bad job at a patchwork doll. I can relate to not liking what you're seeing. I don't go. Anywhere these day either. Only if I have to. Dressing up? Maybe twice a year. Maybe if I make an effort more. I may not have shit on my boots. But shit sure does have a. Way of finding me. My step father had a heart attack and is a lot slower now and I warned my mother. This would happen. More stress. I don't want to be around people either. Nor have anyone even see me. So I'll sit with you and your snow shit covered boots and you have tea and I'll have coffee And we will sit and bitch about masks. I'm sick of them also. I'm still making them
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Runor-
I'm still new here but I wanted to reach out and grab your hand and tell you that you aren't alone. The only thing worse than stage 4 is stage 4 during a pandemic.
((Hugs))
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Tangand, I am not stage 4. Just a hopeless bitcher who can't pick herself up off her face these days. But you make a good point, things could be worse. Love to you all.
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Love to you Runor. You are not alone. I am tempted to try to say something witty (at least in my view) and likely inappropriate but I'll stick to I feel ya lady. COVID sucks along with other things. I hope things get better for you soon and you're back telling funny stories like the one about the chin hair you're husband did tell you about.
Tangandchris: I think I remember you from the Stage 3 thread?
I sleep for crap lately. I keep waking up about 1 or 2 am and can't get back to sleep. My alarm will go off in 45 minutes. It's going to be a long day.
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Runor,
Ditto
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Thank God I’m not alone with my belly. In my 16 months on Ibrance/Anastrozole, I have gained 10 lbs. 4 years ago we discovered I had adult onset scoliosis for severe degenerative disease and I lost 3 inches in height. That made me have a Buddha belly and then the weight gain. I can’t even walk to the mailbox at the end of the driveway due to pain. Are we the only ones to have these problems?
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Runor you are gifted at retaining a killer sense of humor even from the dark places. I LOL'd about the drugs.
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Still sitting in the infusion chair. Apparently my blood work came back with extremely high calcium levels. So my Onc showed up and asked me a bunch of questions, and said with the levels so high, they would admit me into the hospital. But I got my Xgeva shot and after my Abraxane infusion, the put me on a saline bag. So I’m still sitting here, waiting for the bag to be done.
Anyone have high calcium levels? Oh and Mi found out I’m in Stage 3 kidney failure
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Booboo- Praying for you.
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booboo - oh gosh, how stressful but glad they caught It! The elevated calcium and kidney failure are probably related. Kidney failure can lead to high calcium. They'll need to figure out how to reduce it. Sometimes lots of iv fluid, steroids and loop diuretic can fix it. Glad they're admitting you to sort it out.
How are you feeling?
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boo-boo.....sorry to hear this.
Runor- I assumed, sorry hope I didn't offend in anyway. The feelings are all identifiable though.
Yes I was on the stage 3 thread, looks like I graduated though. I used to hang out on the insomniac thread but I lost touch and am worried the original poster is MIA. I've lost a few friends from that group too, it sucks.
We've been watching the inauguration and it makes me feel hopeful.
Love and hugs
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Booboo, Sorry you got that unexpected news today. I hope they can get you taken care of. I’ve had a few high calcium levels show up on monthly labs (11.7 highest) and was referred to an endocrinologist. My high calcium seems to be related to parathyroid disease. Sending you a hug and hanging around in your pocket with good wishes for you
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Karen- How are you doing from the draining of the lung?
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So I just got a call to schedule 3 CT scans for next Wednesday. I wasn't expecting 3! I am also having a PET scan Monday. These will be my first scans since starting treatment.
I'm not sure, is this the norm??
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tangandchris, when were your last scans? I was having scans every 8 weeks while on a clinical trial but now I think we will go to every 12 weeks.
3CTs might be just one big one - head, chest and abdomen. It still only takes a few minutes and it's the same contrast.
I've never had a PET - our MOs hardly ever prescribe those so I can't comment on that. Seems very practitioner & insurance dependent. If you've never had one I can see how an MO might want a baseline though...
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booboo, can the kidney improve or is it possibly struggling due to the abraxane and likely to heal after? I saw my number drop a couple of times on the kidney function labs. Hopefully, this is temporary.
tangandchris, “looks like I’ve graduated”, for someone fairly new to stage IV, your sarcasm/humor is coming along nicely.
Lazy day for me, watching a movie and eating a Reese’s peanut butter cup.
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Booboo, I hate that you have bad news. I never know what to say to help someone through that paralyzing moment when you think, really? More bad news? Who is in charge of this shit? I want a word with management...
More on growing bellies. I think mine is going to audition as Jaba the Hutt at the new Star Wars movie. But worse than being hideous is that clothes no longer fit me. I fear my clothing. I am defeated by my pants. Pants assume you have a certain shape that facilitates their secure placement on your body. When you lose that shape, you lose your pants. While my belly has blossomed into the gelatinous mass, my ass has not kept pace. I'm all gut, no butt and you cannot keep pants on this body. I have perpetual plumber butt with my ass crack hanging out all the time. Now I could wear super tight pants that squeeze me grotesquely in the middle making me look like a tube of toothpaste with a rubber band. But those pants hurt. They dig in. They leave creases in my flabby skin. I hate them. So I wear pants that are a bit too big because they don't dig in. That also don't stay on. It's a problem.
In desperation I dug out a pair of very lightweight leggings. At least they had an elastic waist that sort of stays on better than pants. Out I went to do chores in my leggings. In Canada. In winter. Insulative quality of leggings - zero. I may as well have been out there with no pants at all. The wind cut right though them. What to do about this? I dug around in my closet and found a long, flowing, billowing summer skirt and pulled that on over my leggings. Winter chore jacket, insulated neoprene work gloves, snow boots, long flowing skirt. Off I go to feed and water the chickens, who freaked right out when I flounced into their pen. Problem, long skirt catches on the toes of my boots, yanks itself down and almost lands me on my face as well it drags in the chicken shit when I stoop to gather eggs. But it does provide a cozy layer of warm air around me. What to do? I got two rubber bands out of the junk drawer and gathered up a big handful of skirt fabric over each thigh and made like huge skirt ponytails sticking straight out. This hoiked the skirt up out of boot and shit range. I was warm, my leggings/skirt were staying in place, my ass crack was not on display...I was feeling pretty chuffed about this when Hub came home from work and spied me shovelling snow. He stops. "What the hell are you wearing?" The big thigh handles sticking straight out are a bit alarming, I admit this, but really, I felt he should be congratulating me on my ingenuity. When I was young I used to wear designer clothes and cutting edge fashion. Now I have shit on my skirt and a belly that holds my boobs up. Sigh.
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