My Husband, My Life, My Love, My Family, My Cancer
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Mel, the red face and dizziness sucks so bad. I get the same thing. I watch other people running and walking, even in normal temps and here I am, dripping with sweat red face, swollen fingers due to blood going to my extremities. Ridiculous. I think a gym membership is in my future, partly to get me out but also to give me access to more equipment that I cannot store. I may not be able to sustain walking outdoors but I can at least put myself in better shape indoors. I want to build more muscle and continue the balance training at home and regain the ability to get up if I do take a fall.
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Rosie- I have heard of Ritalin for our fatigue, though I don't know much about it. In fact, when I mentioned the fatigue to my MO-- back last year, I think, when I started the Lynparza-- she mentioned she could prescribe it for me. I saw in her notes on the patient portal that she commented on wanting to prescribe it and I declined. I just hate taking more meds. Another pill. More side effects. Everything has side effects. "Here take this and you could have suicidal thoughts, or hallucinations, or scream uncontrollably"-- that last one I made up.
I don't know. I just want to feel like the old me. Go to a Fall festival, eat some good foods, stomach feel good, tired at bedtime after a busy day like someone should feel. I guess those days are gone, unless I pop a Ritalin, a Zofran, and have a Depends underpants with me.
Pocket duty list for this week--
Sondra--- MO Monday
Emac--- Scans and MO Tuesday
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I get a prescription for adderall for energy.. I save it for the days I have things to do. I don’t take it everyday. Yes there are side effects, I feel strung out. Like a car running on empty. Cough up fumes to make it home. But it works. Then the next day I sleep a little more. But I took ritilan it gave me headaches and sweats. I felt horrible on it. Asked to change. Adderall works better for me.
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Reporting to pocket duty for Sondra, Emac and anyone else in need. Thanks Candy for the reminder 🙂
Not much note worthy, just some gardening chores and hanging out with our friend before he heads home tomorrow.
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Hello Mae~ glad to hear that your knee is feeling better. I know how active you are. Have a good time with your friend! Hug the puppies for me.
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We drove to Michigan so my husband could go to our friend’s funeral. I’m staying with our best friends so as not to get exposed to anything. We brought Bella our 12 yr old with us as I don’t feel comfortable leaving her in the kennel due to her age. Plus she is the perfect traveler - she sits in the back seat for the entire trip - just like Driving Miss Daisy. Our other 2 are at the kennel and have a great time. On Monday and Tuesday they both get to go to doggy day camp. I hope their smiles bring a smile to you. I wish all the pain and sadness here would go away.
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Goldens-- pictures of your beautiful dogs always bring a smile to me. Enjoy your time away.
When I read of all the damn medications we take to just feel better; cancer treatments, pain meds, uppers, downers, antidepressants,immodium and on and on , it boggles the mind. What choice do we have ?
In your pocket Emac and Sondra and anyone else who needs some company. I don't have scans but have to go for more blood work to see if my counts have gone up enough so I can restart the Ibrance. I may need a little pocket duty for Wednesday.
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Beautiful dogs Goldens, I still remember my aunt having a golden named Tawny she was the first dog I ever liked. That was long ago but she still sticks out in my mind.
Nothing happening except getting my garbage ready for putting out.
I did discover a new taste that was delicious, took 1/2 cup of the cottage cheese and took my maple and bacon seasoning to give it a sweet test. Oh my goodness, I was in heaven, I definitely think pancakes are going to need to happen with the cottage cheese. Will have to go to the grocery store to pick up some pancake mix to add the cottage cheese in place of milk. That would be treated as a dessert or snack.
I do need to be careful about stuff made with cottage cheese as it is so filling, which is good, it makes it so I have to set aside my meal and I don't get enough calories and I don't need my body to go into starvation mode. I think for my activity level and goal weight I should be eating 1800 to 2000 calories. I have also decided that tomorrow, I am going to take the bus to the gym I want to join which is nearby on a bus route. Only 6.99 every two weeks. That will allow me to do the strength training I am more interested in and back on a rowing machine which I loved before. I can still look into the pool at the boys and girls club location here for low income as well, 80 per year as well.
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Goldens--- Love the pics.
Living--- Pocket duty for you this week too.
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thank you Candy you sweet woman.!
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Thank you for remembering me Candy. I have my CT on Tuesday but my MO appointment got moved to Thursday. Your post prompted an interesting discussion. I had not considered Ritalin. I may add that to my list to ask about at my appointment. I've been on Wellbutrin (Bupropion)xl for cancer related fatigue. I recently stopped taking it because I haven't noticed that it does much in that regard. My trusty standby, coffee, has failed me too. Lately I don't seem to have a tolerance for caffeine in any form. I get the jitters, dizziness and shakes from even a small amount.
Mara and Goldens - such sweet faces on your furry friends!
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Candy – I'm sorry you're feeling so bad after being on your treatment for a year. What you describe is my first months on Verzenio. I was only up 5-6 hours a day – and not all at once. I only say this to show I understand what you're going through, and I know it stinks. With a dose reduction (which was scary to me), I still wear out easily, and I still deal with the gastro issues, just less frequently.
Candy and dodgersgirl - There's a suggestion for dealing with the big D on the Verzenio thread. Taking Metamucil (or FiberCon) once or twice a day can help to absorb excess liquid. You just need to make sure you don't take it too close to taking your meds. Some posters described it as "life-changing". Personally, I take Imodium profalactally if I'm going to be traveling or out and about all day (haha, that means 4-5 hours). If nothing else, it slows the urgency. On days I'm home, I don't take anything for it. I always have Imodium and Gas-X or Phazyme (for cramping) in my purse. And I try not to go places where I won't have access to a bathroom. Anyway, you might ask your doc about the Metamucil.
Our recent losses on this site have been very hard. It reinforced for me to go and do things I want to while I can. So, if something comes up that we want to do, I plan for it - sleeping in or resting ahead of time; watching my diet and taking Imodium - and we go. We're rarely out more than a few hours at a time, but we go. Traveling is the hardest, but worth it.
Sondra- thanks for the tip on the senior work out. I've been thinking about trying something like that. Chicagoan - do I remember you having a yoga workout?
Goldens and Mara – LOVE the pet pics!
Slow day here. I video called with one of my sisters today while she was making a lasagna. We're trying to figure out a time when she can come visit. Then, I had a long phone call with my daughter. I straightened out a little paperwork and purged some old computer game CDs (remember those?). Other than that my hiney was parked on the couch.
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Well, nothing happening for me today, I feel terrible with a cough, throat is itchy and headache. I did sleep pretty well last night though but I am exhausted so just going to sit and watch TV and eat a little bit but that is about it. I have zero desire to do anything else, just taking advil, Tylenol and Buckleys, expectorant during the day and the cough suppressant at night, put some vicks vaporub in my ears and just under my nose. Hope this is gone soon as I feel miserable.
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Deb, in your pocket on Wednesday. I’ll bring Molasses sugar cookies. Yum. Warm from the oven. Praying that your counts have gone up enough so you can restart treatment.
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Goldens, you have no idea what joy you bring when you post pics of your beautiful furry family. I miss my boys every day, so seeing your dogs makes me smile.
Mara, my dear, I wish I could come over and tuck you in, make you chicken soup, and play big sister. Hoping this is just an end of summer cold that is gone quickly.
Emac, in your pocket on Tuesday. I think of you a lot and wonder if you still have pain in your leg where the rod was installed? I guess cancer has grown back around my leg where they put my rod because that’s where a lot of my pain originates.
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Scans came back good so I am clear for the nip/tuck on my non-cancer breast in December. Scanning to be lengthened out a bit. Also lost another half kilo, which was a miracle considering my stress eating last week. Was happy with that visit for sure.
Hospital was nice and quiet although I imagine its a mob scene now. I went to stand on a corner for a bit where the hearse was due to come through and after 20 minutes bailed to go home as it was starting to get pushy and kinda nuts. Glad I did as they were already starting to shut the tube station gates for crowd control. Ive been in those post event transport crowds before and its almost faster to walk home.
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sorry you don’t feel well Mara. Get some rest. Drink fluids. Your medicine concoction sounds just like one of your new recipes! You’re full of knowledge!
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Seeq— thank you for your post about the big D
My treatment before current tx was Verzenio. Metamucil didn’t help me. Unfortunately. I have to plan trips (which really is trips for doctor stuff) and watch what I eat and then followed by preemptive anti-diarrhea meds. I track how often I have BM and share with my PCP and MO. (I keep spreadsheets and admit to being anal). I just have to learn to be happy with what I can do from home. Most of the time it’s enough. But I haven’t been in a retail store for 2 years. I wanted Candy to know she I sent not alone in her wishes to return to a more normal life. Lots of us “get it” we just post about it much. Cancer sucks
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Thank you Laurie and Mel, an older sister sounds great. I am starting to improve and am not coughing so much. I will still take it easy, taken a couple of naps already. Just going to watch house of the dragon. Will continue to take meds and go to bed earlier tonight. Need to get some breakfast first.
Dodgers girl, I am so sorry you are having to keep track of BM and that you cannot trust going out regular places. That is a real shame, I do hope a solution comes up soon. In your pocket too.
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SeeQ-Here is a link to my youtube channel. I made videos for 2 yoga practices. https://www.youtube.com/channel/UCOFSHcnQIEilW7_mM...
Mara-Hope you feel better soon. Keep resting as you are doing. It is possible you have Covid based on your symptoms. I had it in August-it was no big deal. If you have a stash of at-home Covid tests, maybe keep testing yourself over the next few days until your symptoms are gone so that you don't accidentally spread it if you are positive. I felt better after about 5 days but quarantined for 10 b/c I kept testing positive.
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Mara- thank yo
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Sondra--- Woohoo on good scans.
Dodgers-- I too monitor my BM's--- I admit I have a bit of OCD. I usually have constipation, so I have to watch how many days it has been since a good poo. But, lately, my bowels are all over the place, so to speak. I will not go for a few days, then BAM cramps and soft stool (not really diarrhea). And I have episodes of eating a meal followed by horrendous cramping and urgency--- hence not being able to be very social anymore. I am afraid to be out with friends for a meal and having an episode of being in the bathroom for an hour at a time and smelling up the place. I don't want them standing at the bathroom door and saying "Candy, you ok in there?".
Today I am trying to be thankful. Yes, I am in my house alone, but there is food in the cabinets, the bills are paid, I have my cat. I am alive. Alone, but alive. Wishing I could have my old life back, but I am alive. It could be worse. And someday it will be worse. So I will try to enjoy how it is now.
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Candy— right there with you. You are not alone in those SEs, unfortunately
Have you discovered which foods are more likely to trigger an event?
Also, there is a product called Poo-Pouri (I have purchased it at Bed, Bath, and Beyond in the past. Small enough to carry in your pocke. You simply spray the toilet water in the bowl 3 to 4 times before using the toilet. It traps the smell in the water so you don’t have to worry about smells in a public restroom
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Dodgers--- It doesn't seem to be a particular food. Or an amount of food. Even a small amount of food will activate it. I guess it is just the peristalsis of eating and then the guts starting in. But.... last night, in bed I was awoken with cramps and went to the bathroom to have cramping and a loose stool. See, no rhyme or reason. I am at the mercy of my bowels anymore. So going on trips is iffy. I could need the restroom when we are on the Interstate. And if we did get pulled over in time, then my friends would have to wait till I would be able to continue the trip--- maybe an hour or so--- for my bowels to safely calm down to get back on the road. So with the nausea, and the bowels, I need to stay close to home and just deal with it myself.
Uh-Oh.... I think it is getting time for a nap. The curtain of fatigue is falling. You know that feeling. Like a curtain dropping over my mind. I did get some things accomplished this morning, and my laundry is in the dryer, so I guess time for a rest. 1pm here. Woohoo for my life now. And I am only 51 years old. Seems like I am an old lady anymore.
Hard to stay positive.
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Candy and Dodgersgirl, I am sorry for what you are going through with the digestive issues. Nothing worse than that in my mind, hopefully you can identify the foods and avoid issues in future.
I am actually feeling better. Had a dry cough and runny nose after the advil, tylenol and Buckley's expectorant, figure better to get the stuff out. Also been asleep off and on and all I have done is watch House of the Dragon and drifted off to youtube videos but I am listening to my body. Planning for an early bed and taking a cough suppressant overnight. I am hoping it is gone by tomorrow which would make this around 3 days long.
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Sondra- congratulations on good scans!
Mara- feel better soon. Wasn't House of the Dragon exciting this week!!
I watched a bit of the Queens funeral today. It will be interesting to see how King Charles lll can follow in her footsteps. Also watched a church ceremony from Ottawa where an Indigenous leader was speaking of the injustices the British had brought to their community etc. Although Canada is part of the Commonwealth now, I do wonder how long this will last.
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seems like my side effects take turns. One will flare up and bother me for a month or so and then another will pop up and take over for the next month. Annoying sooo so annoying. I wateched a lot of the queens funeral. It was an amazing thing to see. She sure was a solid woman. Rip. To the queen. I get Xgeva tomorrow and bloodwork. So I'm thrilled. Not! It's early but DH was tired tonight I was painting. And he wa to go up to read a little earlier tonight. So I hope insomnia doesn't bother me because it's a little earlier than usual. I think k about you ladies everyday. Congrats Sondra. ! Hugs to all my sisters ! Goodnight !
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this is where I want to be.
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That is a pretty scene and I can totally understand why you want to be there.
I am off to bed early tonight after my tea comes out of the microwave, need to eat better tomorrow, only had some peanut butter and a bit of chocolate. Will correct that tomorrow for sure and do my chores.
Living, House of the Dragon was exciting this week and next week there will be a 10 year time jump so there are different actresses playing Alicent and Rhaneyra with older versions of their kids. I saw that in a trailer breakdown so this should be interesting.
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Sondra, happy dancing for your good results.
Mara , get well soon . Your symptoms do suggest you may have covid; dont push yourself too hard, too soon.
Candy, can your doctors prescribe you an anti diarrheal. I take them about 4 or 5 days after chemo, if I know I have to leave home . Warning TMI, I have had a few accidents where I have not made it to the bathroom in time and it always takes ages to stop. I take the tablets 2 hours before I leave my house and continue to take them while I am out. My son has IBS and was reluctant to take anti diarrhea tablets every day [ he has to go out to work] but his consultant said people take them for their whole life , for example if they are born with a short bowel, without ill effect. Sorry, I dont mean to nag, but help you confidently get to church or out with your friends once in a while.
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