My Husband, My Life, My Love, My Family, My Cancer
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Mel, I can see how the piles of laundry would be frustrating since you have offered him an option. I confess that even though I purchased with the down payment and paid the mortgage payments right up until I got sick, my mother did laundry up until a couple of years before she died. She did not pick up my clothes for me, it was up to me to at least get it downstairs. She was very particular about how she liked household chores done and it took some pushing at my end to finally get her to acquiesce some of the control over to me. I did not like the fact that she did the housework when she was older, especially when I was working at home. I finally forced the issue, and started doing it for myself. I very much like looking after my apartment and deciding how much I want to do. I no longer work so I have time to swap out towels every night and get them washed up. Washing clothes whenever I want is awesome. Cleaning floors, dusting are fun to me. No one to say oh you did this wrong. I even have been sewing up my favourite pair of denim leggings as I like how they have faded. I don't know what I am doing, but if you can't see my thighs, I must be doing something right.
Ordering in fast food tonight, craving a proper burger and onion rings. Going to order right now.
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Philly, I’m in for pocket duty tonight (soon) and for your scans tomorrow.
I could use some pocket support too tomorrow. I have my lumpectomy and node dissection bright and early. I’m a tad nervous and hoping for no surprises
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Thanks Mara and Candy...I am starting to get nervous because the only drug that has officially worked was Taxol. I have tumors pressing against nerves in my back on both sides, and cancer is taking up one half of my right femur. I will probably need surgery to keep my right leg attached to my hip, so a lot happening.
Anyway, I am not panicking yet. Lots of options, but I guess it's the unknown that's hard to deal with.
Frisky, thank you so much for mentioning acupuncture. I had it years ago, but that's probably my best option for pain relief right now.
Mel, if I told you some of the wacky things my BIL did, you would really laugh your head off. I was so sick the whole time they were here, I couldn't do much to stop the crazy. But I'm glad I set some boundaries without any bad blood.
Waving hi to my sweet Tanya who checked in via text. You are seriously now my sister from another Mother. Can't wait to get together again in the new year.
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Rosie,
Reporting for pocket duty. I had that surgery, and it's not too bad. But any surgery is bound to make us nervous, so I'll be praying for peace and for a great outcome. Please let us know how you are doing when you can. You will be in my thoughts until then.
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Philly and Rosie, I will be in both of your pockets sending my healing energy your way.
I have my infusion of Herceptin and MO app't tomorrow. Hoping they will give me MRI results from Nov 25th as well. My RO appointment for that is not until next week but my MO often will let me know the results if her app't comes up first. I don't have any brain symptoms going on but I always feel more nervous about the MRI since my brain did have recurrence once.
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Here for pocket duty!!!
I just finished a round of MRI's Philly - lumbar and thoracic. I see the neurologist next week for results and suggestions. I too wonder if a different AI is in order for you? I'm having a very different experience with Aromasin than I had with Letrozole.
Lynnwood and Candy, how I feel for you both. I have been having so many problems and if I'm walking further than anywhere around the house I use a cane. Lynnwood, my MRI's show several compression fractures( C7, T11 and L5) T11 is so bad that I only have ten percent height left in that vertebra. The other two I have 25 percent height left. I'm about three inches shorter than I used to be. I have degenerative disc disease and three bulging discs where these fractures are and foraminal stenosis at L5 (good old sciatica) I was getting better this summer, but something happened this fall and now I'm always in pain trying to walk and my leg is always achy tingly. I'm seeing an acupuncturist for the first time tomorrow. I see palliative care for pain control and sleep issues later this month. I do about an hour of PT every morning. The one GOOD thing about that emergency root canal last week is that I was on so much advil my back was feeling pretty good. I nearly forgot that I aso have a hip fracture. The ONLY person who I feel is following me closely and monitoring how I really am is my physical therapist. Otherwise the orthopedic oncologist situation in my city is abysmal. We talked to the neurologist about going to another city and he was not very into the idea. I feel a bit lost at sea and it does suck. It's very very discouraging.
I am really tired this week. I feel like my six weeks on Afinitor/Aromasin is finally catching up with me. Having side effects this week and just dragging. Very weird - like it was cumulative or something. The first few weeks on this combo was pretty easy but I definitely have SE's to report when I have my check up this week. I'm thinking it'll level off but omg. I have to wake up for Saturday - I promised my students a holiday recital Saturday afternoon and I'm playing holiday duets with all of the littles.
Frisky omg the sandwich sounds wonderful. We have good delis here but nothing like NYC. My few trips to NYC showed me what a real deli is, a real bagel and on and on....I love it there.
BooBoo nooooooo on the Piqray. Im so sorry but glad you are OFF and feeling better.
I'm still working through Schitt's Creek and The Crown (season 3) Mel, Nurse Jackie was a great show. I love Edie Falco too.
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I'm available for pocket duty 🙂 My left foot is painful and a little swollen so I may have to where my boot. Apologies in advance for any boot related incidents.
I put two strings of Christmas lights up on the front porch railing. I hope to do get some more decorating done but I'm getting tired. It is 7 pm after all.
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Just woke up from a total collapse...nothing like one's bed after a long day at the hospital...
Moomala the description of your deterioration is scary and yet very familiar...I'm so sorry you're suffering physically so much right now...
I too went through losing inches of height from 2 compressed vertebrae...I too could barely function from the pain, the limping, and fatigue....yet, I have been pain free for a very long time now. ( I'm not counting the dull pain around my collapsed vertebra that's constant but easily manageable)
So, I'm wondering what happened to me, or what I did to free myself from that sort of progressive pain.
Apart from the successful acupuncture sessions, and the use of oil of magnesium, I did start to religiously take calcium citrate and magnesium citrate at night before going to bed. That was in combination with 10,000 iu of Vitamin D3 and K7....oh and also boron....
Other supplements that I have successfully used recently when an acute pain in my rib cage and muscles under my left breast was making it impossible to turn in bed, has been an increase in good quality Omega3 fatty acids. They are powerful anti inflammatories and helped me tremendously. I'm happily pain free again and of course empowered because not only it worked, but I figured it out on my own...
When I tell my doctors, of course, they roll their eyes... can't believe what I'm doing...but I don't care...I feel good and that's what matters...
These remedies might not work for you as much, we're all different, but it might be worth trying, in the event you're not supplementing already....
whatever you do, I do hope you get massimum relief from your painsoon...
Ohhh and I too love Schitt's Creek The Crown, and Nurse Jackie!
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All very encouraging Frisky. I had unbelievable pain from the thoracic fracture. I couldn't turn over in bed without a several step process but that's gone now. My lower back was awful last fall , and then this summer I'd never have known my lower back had a problem. But now...wow. it really hurts again. So I have a little hope especially reading your post. I do a good amount of supplementing. 10000 IU of D3 is a lot. My D levels were up in the toxic range at that amount so I've cut back a little bit. But some people NEED to take that much just to maintain a quality level in the bloodstream. I used Garden of Life Raw Calcium which has a good amount of D3 and K2. Had my levels checked last month and was headed back up into the high range. Yipes. But I'm not going to stop supplementing. Omega 3 is something I've been ignoring. I generally use Nordic Naturals and you've reminded me to purchase that next time I'm at the shops. YES to figuring all that out on your own. It takes longer and a bit of trial and error but you did it!
Now - evening naps Frisky and dutchiris. I tend to fall asleep shortly after dinner and then wake back up. Afinitor/Aromasin has been giving me some pretty consistent insomnia. Sleep, wake, sleep, wake. So my sleep is not steady and I don't love that. Ibrance and letrozole was wonderful in that regard. In bed by ten and sometimes sleeping straight through until seven am. It was heaven. I'm hoping that when i get my MM card I find a full night's sleep again.
Where did I see you were listening to Mozart Frisky? I'm a pianist and teacher. I cannot say I have a favorite composer, I get so much out of them all (with some exceptions) Lately I've been listening to the 2nd and 3rd movements Beethoven Emperor Concerto non stop.
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oh Moomala...you're a pianist, how lucky you are...how I envy you!! I have a soft spot for Mozart but likewise I love many composers...it all depends on the mood I'm in....For many years I hoped to reincarnate as a soprano capable of singing The Queen of the Night....now I hope to be spared any form of reincarnation, if possible....I'll check those Beethoven movements you've recommended....
I spent my whole life as a visual artist, designing scenery for the theatre, tv and movies....now I write...I love solitude...peace and quiet...perfect considering the fatigue and challenges of a cancer patient....
Glad to hear you're already supplementing and have eliminated prior pains...sometime the treatment are also the cause of our problems...hard to distinguish between the two...
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Rosie reporting for pocket duty! Good luck tomorrow - I can totally understand being nervous. Here's to smooth sailing through the process.
I am back home now from the MRI. My sweet parents both went with me. There were some issues with the left arm IV placement so we moved to the right arm and it worked. The MRI was 40 minutes long...I was doing great...singing songs to myself...and then my shoulder joints started to ache so I guess I got a little squirmy. The tech was awesome and helped me get more comfortable but we had to redo a couple of the images. Then, after she injected the dye, suddenly my belly started to expand with gas and it just came out LOL!!! So because of farts (or as my family likes to call them, bomboms) I ended up causing some more blurriness of the images so we had to do two more over. LOL! So all in all it took about 75 minutes ACK!! SUCH A LONG MRI!!
Anyway, my mom and I went out afterwards for some food and I had a delicious baby kale, apple, goat cheese, candied walnuts, picked onions, pumpernickle croutons with apple cider vinegar dressing salad. And then topped it off with sharing a hot baked 1/2 chocolate chip 1/2 brownie topped with vanilla ice cream delight!!!!!!!!!!!!! YUMMMMMMMMMMMMM!!! My mom and I gobbled it up! This is truly my most favorite type of dessert on the planet.
Now the electricity in my building is going to be turned off all night long starting at 11pm because there is some type of work needing to be done on a transformer in the building. My building has 570 units!! Its an entire city block! I guess I will light some candles and charge up my phone here.
Thank you everyone for being in my pocket! I felt your presence and I was actually smiling and singing songs while in the MRI tube. Absolutely ZERO anxiety
It was almost dreamy!0 -
BooBoo, sorry to hear about having to stop Piqray. It is shaping up to be a tough drug for many. I just switched off of Navelbine/Tamoxifen a few weeks ago to Gemzar due to liver progression. My MO and I were deciding between Piqray and Gemzar. In addition to me having no confidence Piqray will actually work for me, my MO told me that the side effects of Piqray are significantly worse than Gemzar, an IV chemo. I found that shocking and disturbing! So, it is not you, it is the medicine.
BooBoo and Tanya, I loved seeing the photo of you two that you posted a while back! I am happy that you two were able to meet up. I was in Tampa last weekend but again, it was a quick, in/out trip for Thanksgiving.
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Frisky, Schitt's Creek...oh my god I want to be senior, thin, overly made-up and wearing Catherine O'Hara's wardrobe. That show kills me, but especially Catherine O'Hara. I still remember her from Second City Television. I'm that old.
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OMG Runor...And what about the characters she played in all those satires she did with Christopher Guest. Do you remember movies like: Best in Show and Waiting for Guffman?? I can't stop laughing just thinking about those comedies...I must have rewatched dozen of times and remain still amazed by their wit and creativity.
What made their work so special was the lack of a script...They worked off an outline and were improvising and developing the characters as they went along...Catherine OHara is indeed amazingly talented!!0 -
my list of things to watch keeps growing. Thanks ladies!!
Moomala~insomnia is the worst. I am still on Ibrance. Starting my 38th month. It is tolerable for sure. I’d stay on this forever if I could. It will be four year in January since my diagnosis. I am sorry you’re having problems with your treatment. BooBoo, you too wtf were already sick people stop giving us things to take that make it worse. “Figure it out” In my best Letterkenny imitation!!
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Yes, it sucks when the drugs are so toxic that you end up worse than before. But I just roll with it. I know that each of us will react differently to every drug we try, so it’s part of the process to try and fail until one works. I’m hoping the next one works. Until then, I am going to try acupuncture and some of the other suggestions that I’ve read on this thread. Man, am I glad I found Mel’s living room. So much good info is shared here. And the support is so awesome.
JFL, would love to meet you when you come back to FL!
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Moomala, I slept terribly as well. Went to bed at 1230 and woke again at 330. I stayed in bed but really did not sleep much between 330 and 630 when I finally got out of bed. I have an earlier appointment and I think my mind tells my body not to sleep in because those are the nights that suck for me. I am sorry you were restless too.
Surprisingly, I told myself that instead of sitting around dopey until I left, I made myself walk. Not terribly fast, only 2.5 mph an hour for half an hour. I knew I would feel a little better since I have an infusion today. Figured it would help. I am still tired, but feel like I can accomplish what I need for today. Going to wear the traction cleats to the cancer clinic as I see it has snowed and I do not trust there is not icy stuff underneath it. Don't feel like falling.
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Feeling pretty run down and awful today, and wasn't able to walk much as everything is tight. I really, really do wonder if there is a secondary issue going on that is causing some issues - I feel exactly the same as I did since June and the point AFTER I injured myself. This sub-flu like feeling and upset stomach, fatigue, not wanting to eat, heavy legs, chills on occasion or sometimes flushed face. Im on Day 6 of I/L and maybe its causing the same problems, or the after effects of the rads maybe. I don't even know who to contact anymore about this stuff - is it an osteopath issue or back to the chiro or PT or what. I just want to feel better, or the best I can achieve now with these pills, and something tells me this isn't quite right. Should I raise it with the MO?
Guess Ill go take a nap and stretch out for a bit. Just bummed today.
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Sondra f tell the mo or the onc. Do you still have the Pfizer lady calling about SE’s? I hope the nap does some good.
Safe walking Mara.
JFL let us know if you’re in Tampa again and we’ll find a nearby place and meet you. Booboo and I could’ve sat and talked forever-about life
Tanya
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Sondra, I would call the MO if concerned. You know your body and if something is wrong. Healing thoughts. Hope a rest helps.
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Sondra first of all - cup of tea and scone. Followed with shoulders for your head and ears/hearts the size of a continent. Here for you. I find your symptoms a little interesting actually. I had them all on my two weeks between Ibrance/Letrozole and Afinitor/Aromasin. So that makes me wonder if your body might not be fighting a little battle between cancer, rads and starting a new powerful drug. Let your body have the rest it needs. It seems to be telling you. The other side of that is that you know your body best and if something seems not quite right then by all means let the doctor know. I soooo get that feeling of not knowing who to contact about what anymore. Everyone stays in their lane around here but sometimes things come up that can cross over and it's hard to know what to do. I said upthread somewhere I feel lost at sea sometimes. I feel that way today except my daughter is having trouble. My sister is having trouble. I just had to tell them both I can't take care of them today. I'm too tired and my body doesn't feel all that awesome. I want to be a helpful person to them but some days are "conserve energy for me" days.
BooBoo what a fantastic attitude to have about the drugs. Just to roll with it. Piqray is on the bye bye list for you and hopefully never to return. Let it go and move on to the next thing. I had SUCH a hard time letting go of Ibrance. I felt really great on it. After such a short time on it - ugh soooo hard to understand that it was only giving me a partial response and that's just not good enough. I never really faced living with uncertainty before and I was so certain i was going to be one of those great responders to Ibrance. Talk about a smack down. I love the learning to roll with it but I'm sorry you had to go through anything uncomfortable.
Mara - I'm headed to my walking spot to do one of the Leslie Sansone videos. I used to be amused by Leslie Sansone videos. Phhhht waaaaay too easy for me. Now she is a god-send to me. This week is full of one-milers but the feeling of accomplishment is everything. I'm following your lead. I'm so tired this morning but i'm going to do this!
Best In Show is one of my favorite all time movies but I also loved A Mighty Wind. Catherine O'Hara and Eugene Levy played a couple modeled after a 60's folk duo Jim and Jean. My mother played Jim and Jean albums all the time. It was wonderful to see the two characters played out like that. But honestly Best In Show was my favorite. I love the character she's doing in Schitt's Creek. Just the extra flare she puts in some of the ends of her phrasing is ticklish!
Philly ugh on the long MRI. I go in with a mask over my eyes and a xanax in my gut. I had to giggle about the gas (although I usually giggle about gas - I don't know why - it's childish I know) The food afterward sounds like heaven!!!!!!!!
Ok off to walk with Leslie, do little PT exercise for this back and then have my very first acupuncture visit. I hope I can stay away for all of it!
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Sondra...you might want to look up and consider taking ashawaganda. it's an herb that supports the adrenal glands whose job is to deal with stress....
Because our stresses never end...our adrenals are overworked and burned-out...the symptoms are mental and physical exhaustion, inability to get a good nights sleep, depression and finding it hard to cope with problems, among other things.
Stimulating ourselves with coffee doesn't help the adrenals....it's like adding gasoline to a fire you want to estinguish....instead like Moomala has suggested resting and reducing stress is the way to go...do instead things that make you laugh...laughing stimulates the endorphins that make us feel good and strong...
JFL has managed to raise her hemoglobin level to normal with ashawaganda, and it's also approved by the doctors at MSK, whom are not keen on approving much of anything that they can't prescribe...I take it regularly because otherwise I simply wouldn't give a fck about anything....
Just a suggestion...
Moomala...I can see how much fun it must be playing the 2nd movement...I've been listening to a recording of Helene Grimaud at the piano...Beethoven's genius is in a class all by itself...
Do check out Waiting for Guffman is about an amateur theatre group that—as its typical—believe their show is moving to Broadway!!! Hysterically funny...like pee in your pants funny.....
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Moomala, my butt was tired too. Managed to convince myself that I would feel better after the treadmill walk. I did but was still tired. Had to walk 10 mins outside for the bus. That made me feel even better. Leslie is great due to the pace.
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Moomala, my butt was tired too. Managed to convince myself that I would feel better after the treadmill walk. I did but was still tired. Had to walk 10 mins outside for the bus. That made me feel even better. Leslie is great due to the pace.
Sondra, check out laughter yoga on youtube. It got me through many depressive days or days where I felt sickly. It improves endorphins and the body can't tell the difference between fake and real laughter. The benefits are the same. Endorphins improving mood and an easing of pain.
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Hello all. Got caught up on all the posts. Mel's living room is a busy place.
Not all that impressed with Miralax. Got the job done, but dose #2 really didn't do much more than dose #1. Oh well.
Doing some stuff around the house today, not too busy.
Hugs to all.
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Candy~ I take mirilax everyday. The more I took it the more regular I got. I think that stuff works better than any laxative. Those stimulate your colon. Which isn’t very comfortable. Maybe keep giving it a try. I hope it helps you.
This living room Is definitely busy. I find it comforting and supportive is all here together! where is our Mae?
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Mel- My doc (PCP) has mentioned using Miralax before and I never tried it. But the bottle says not to use over 2 weeks regularly. I hate to become "addicted" to it and cannot poop without it. Also it kind of made me burn (in that area) when I did poop. Other stuff I have tried never caused a burning sensation. Wonder if one of the ingredients irritated the area when it traveled thru the colon.
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Candy~I honestly had a period where I used it everyday for over a year until my body adjusted to the medication I was on. Now I’m usually ok. Never had a problem. Maybe your system is sensitive to some of the ingredients that is used. Of course the simplest of things are difficult for us it seems...
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Mominator~ I wanted to thank you for remembering that this will be the first Christmas without my father. You’re such a special woman go to even remember that, my goodness. You my dear are like a rare beautiful rainbow, one rarely seems them everyday , but every once in a while you let us know you’re there.
Thank you again. It will be very hard for me.0 -
JFL~welcome back. Haven’t seen you in a while It’s always nice to see you here. Hope you’re doing good. Sending you hugs!
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