My Husband, My Life, My Love, My Family, My Cancer
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Heard my name mentioned in that roll call. How DO you keep all this straight in your head, Micmel? Life has been very busy lately with lots of changes going on. I realize how little change there is in my life when any change at all messes me up and makes me feel frazzled. So it's a good thing to shake things up once in a while.
I am still waiting for the mammogram that I was supposed to have in September. We are on the edge of November and I STILL haven't got a call for an appointment and my anxiety is going up. Not that finding cancer a month ago would be any different than finding cancer now, but it's that waiting, that dancing on the razor's edge that I resent and get tired of. Aside from that annoyance all seems to be going along fairly well. I drop in here frequently to read but admit I struggle to keep up with the many changes and posts that happen in a day. To all who are having scans that aren't coming back so great, big hug. Hugs to all.0 -
Runor~Hello my friend.... I don’t like to hear you and the anxiety I hear in your posting. I Hope you have your Mammo ASAP. No one needs to be twisting in the wind. Hang onto the fact that they aren’t rushing you into one either. With me. They rushed everything. No waiting, no pauses. Perhaps since they aren’t breaking the speed limits to get you in, they feel confident that it wouldn’t be an issue. That’s my thought and I’m sticking to it! I am wrapping you in a hug and letting you know. We love you...
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Runor, I am sorry it is taking so long to get the test you need to get answers. I will be in your pocket all day everyday until test day wishing you positive results.
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I told my granddaughter I would find a kitten who had blue eyes like hers. When I saw Siam, I knew he was the one. He was 3 months old when I rescued him. He's a lynx point Siamese. Daddy was Siamese and mommy gray tabby. Unfortunately, he's not crazy about children, petrified of my grandson, will tolerate my granddaughter. He is completely devoted to me only. Turns out that's just what I NEED.
So, the hold up for y90 is getting the right information to my IR. Yesterday he got 111 pages of radiology reports. UGH. NOT what he needs. So, today his office will try again to get my MO notes and treatment plans, etc. Evidently, this type of information he needs, along with my recent PET, to explain to my insurance company WHY they should pay for another y90. Why is getting what we need so complicated? I just want to call my insurance and scream " My liver mets are going to kill me if you don't approve this procedure!!!!! Enough said. .But, of course, it's not enough. Grrrr💞
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OMG Grannax, 111 is so many pages to go through. I hope the waiting ends so you can know whether they would cover the procedure or not. Destressing thoughts coming your way.
Not doing much today, housework and laundry are all I wish to do today. Still feeling good and better on just Herceptin. No digestive issues to report here which is nice.
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My view from the hotel this morning, gonna be a great day 😁
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Mae! Where are you?? So beautiful! I love being by the water. Are those palm trees too? Have a wonderful time!
I am taking it easy today - eating matzoh ball soup yum 😋 and going to go to a new dance/cardio class later that I'm excited to check out. And then going to get a tuina medical Chinese massage at a place in Chinatown that I am excited to visit for the first time. Can't wait!! I'm soooo sore from working out this week.
I feel like I get sorer than I used to (pre-medication) when I work out. Does anyone else experience this? That you get sorer muscles now than you used to? I just wonder if this is part of the inflammation that occurs with aromatase inhibitors and Ibrance? <br>
There's this spot on the right side of my lower back that just WON'T budge with any massage I've had so far. It's so tight and aches. And it's right up against my spine. I am thinking about asking my MO for an MRI of my whole spine. I don't wanna be paranoid but it's hard not to!
hello to all the beautiful friends on this thread! Hope everyone is doing as well as can be despite all the ups and downs of this diagnosis.
Love,
Philly
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Hello all. WOW such a busy Thread. Love it.
I took yesterday off... of everything. Tired and stressed, so de-stressed. Spent the day on my recliner with a heating pad on my back (back hurting more lately in one spot, having bone scan soon) and alternated between TV, book and napping. Did not go online to here or social media. Did not make phone calls or dealt with bills. Nothing. It was good to do. And yet, with all that napping I still slept well last night. So I guess my body needed the rest.
Today, back at it. Checking in here. Made out a pile of bills, Doing laundry. Vacuumed.
Good to check in and read everyone's posts.
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Philly, I’m in San Diego, just for a couple days. I got a great deal on a flight/hotel combo so I’m soaking it all up. I’m here for a concert since the band wasn’t coming to Texas.
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Mae, enjoy your concert. San Diego is beautsiful.
Candy, so glad you got some well needed rest as well.
I had a more depressive day yesterday, no crying just worried about stupid things like a sensitive tooth etc. I did not exercise physically other than some limited housework so going back to walking to songs throughout day when not busy. One song at a time as it is easier and It will be a better day today, have my video chat with the volunteer from the care team. She is really very nice and it is nice to talk to her. Our weather here is still grey so not venturing out except to take out garbage. The winds were howling last night. Not as strong today. I am also going to put makeup and hair on for the chat. Not because the volunteer would want it but as a pick me up for myself. Though I shower and change everyday and clothes are clean, I usually don't wear wigs at home. I think it would be nice to wear one today and perk myself up. I have to keep trying because when the anxiety takes over it is awful. I drove myself crazy one day worrying about buying a dryer with an indoor vent to fluff around my clothes as they do come out of the spin dryer pretty wrinkled. I finally just told myself to shut up like anyone else would do and moved on to a TV show to remove the thoughts. I probably will buy the dryer but not yet. I use mesh bags in my portable washer since there is no lint trap so I would just dry them in the same thing. I would get almost no lint and would be able to catch anything. Not doing it yet but probably will do it sooner as opposed to later. I am feeling good today both with my anxiety and mood.
I hope everyone else is as well as you can be, in anybody's pocket who needs me. Glad to hear from runor as well.
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Ho man, what a day its been.
Woke up completely unable to bear weight on right leg. Partner is the best and he was right there to help me deal with getting to the bathroom. Its like 20 feet and took a good ten minutes to travel that far clinging to him. I can lie no problem, sit up no problem, but I cannot flex my hip at a certain degree (or bear weight). He ran to the doctors office when they opened (since they never pick up their phone) and before he got home (its a five minute walk) a GP was on the phone with me. It was too surreal/too British a conversation to describe here, but she prescribed some fricken morphine for my pain - not 1, not 5, but 60!! capsules of 10mg.Nice to have for sure for that breakthrough pain but the amount seemed a little excessive
Partner rushed out right away for the pills, some crutches, and a comforting jam donut. I got my Oncology nurse on the phone and she read off that my full spine MRI was clean (no cracks, no fractures, no mets, no cord compression, no disks about to blow, etc), the left hip xray was also clean, the only area with mets is the SI joint but the goserelin could be messing with that/undetected hip arthritis. Ive only been limping along for five months because of that SI joint so that wouldn't surprise me. GP called back to check in, and I will talk to her on Monday too.
In the meantime I was able to use the crutches to get to my desk chair and take 3 ibuprofen and have the donut and an apple. Partner is taking a hardcore nap and I put out some fire at work. Think its time to tell them on Monday whats up (but its so awkward!).
The shower situation is gonna be.... interesting. We don't have a walk in,we have a high-lipped tub with overhead shower. Normally I balance on the right leg and haul in the left but can't do that now. This was like my greatest fear come true. So I guess its going to be a sponge mop down and I can try using the shower head to wash my hair by standing near the tub. If anyone has some tips on washing hair with crutches - im all ears!
Ill probably take maybe a half of a morphine (or less if possible) tonight but just... gonna... leave.. that..box..alone... I once accidentally took two of my dad's vicodins as I thought they were advil and they took me out for 24 hours.
Going to go lay down now and put my legs up for a bit, maybe watch a movie.
Candy, you had the right idea there!
Mara - take care - windy fall days can really get to be a drag.
Mae- enjoy that vacay!
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Mel - you included me in a roll call - that was so sweet. The tree is fine but now naked we had our first snow last night. However I have picked up a tree stake for the tree and will put it in tomorrow so she can withstand the wind. My empty flower pots made it from the back patio down the three hundred feet to the barn in the wind storm last night. Time to get out the pony blankets so they won't be cold. A little blue cause it seems that winter has arrived abruptly and way too soon. I got my daughter a new kitty (sadly her sweetie passed away a month ago). Every time anyone is eating the kitty jumps up and looks in your mouth to see where the food is going - weird but really cute) Also getting two new horses in this month so life will just get busier - but they are lovely. Obviously I have a shopping problem. I don't post often but I read and I think of you all and wish you only good things.
It was good to see runor post although the anxiety of waiting for tests is exhausting - so Runor hope you get your test soon and have great results.
Mae your travelling pictures are awesome and they look so warm Glad you are enjoying your travels and your music.
LovefromPhilly - femara is kicking my muscles ass - had a similar pain to yours massage didnt work chiro no help so I tried an osteopath and wow what a difference. Its sore today but loose finally. Epson salt soak in the bath helps as well. Last year I could clean the whole barn without a problem - now I get half way and my muscles are screaming. I am uping my omega 3's to see if that helps. Hope you get it sorted out soon.
Love and hugs to all may your days be bright and your nights peaceful and pain free.
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Sondra, that leg thing really is a drag but there is a fairly good video on youtube demonstrating what to do in this type of situation. That video talks about a broken leg but you could adapt it to your own situation.
https://www.youtube.com/watch?v=5lCQHV0w2_I
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Hi all. So a friend came over last night to watch a movie---The Shining, to celebrate Halloween !!!! I stayed up until after 11pm !!!! Unheard of for me. I am usually asleep by 9:30. Hahaha. So this morning dragging. Appt for Lupron and Xgeva and Port Flush at 8:45. Got that done, ran some errands and back home now. Going to bed early tonight !!!
Mara- Hope you are having a better day today.
Wow Sondra- Sorry for the leg issues.
Giddy- Love the kitty story. Bless his/her heart.
Later all.....
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Thanks Candy. I am having a better day today. Had a nice video chat with my volunteer/friend for over an hour. Nice light conversation which was enjoyed. She took me around her house and I walked her around my little place. Nice to videochat on laptops to be able to do that. Was lovely.
Did more exercise this morning so feeling much more up between that and the videochat. I almost expect my SIL or brother to want to visit or go out for coffee tonight so I plan to finish a load of laundry and put it in my portable dryer. I found out I could put in an actual tumble dryer since they can vent indoors BUT not willing to shell the extra dollars if I can keep stuff soft the way I am doing it. We will see. I might take the money that would cost and use it to pay my cable bill and keep extra funds to myself. We will see. Thinking about buying myself a movie theatre popcorn maker that needs oil to work. I know with coconut oil and flavacol, you can get a pretty close facsimile. They also don't cost an arm and a leg. I microwave popcorn and add butter to it BUT it is not quite the same. Too expensive to get the actual movie theatre popcorn delivered. It is over 20.00 just for the popcorn. I also thought about getting some movie theater popcorn and mixing the microwave stuff in with butter and salt. Not sure what I will do. If I keep extra, I can just keep in airtight container and scoop some out here and there and reheat 30 seconds in microwave to freshen it up.
As you can tell, I am feeling quite hungry so better get to making a meal. Hope everyone else had an OK day.
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Sondra. That sounds terrible. So they think it has to do with SI , sciatica?
Giddyup Your farm/ ranch sounds lovely. I can picture the ponies running in the snow. And the new kitty sounds adorable. Pics please.
I actually have my y90 scheduled! The mapping will be on November 13 and the first lobe of liver will be on November 20. The second lobe will be about a month after the first. I think there are a few more hoops to jump through but it feels good to have those dates.
I see my MO on Monday. She is aware that I have gotten my IR's opinion. So, I'm hoping she will be onboard and not opposed. I think we will discuss some sort of systemic TX I can take during the three months that I won't be able to have chemo. I have two ideas, Tamoxifen or Fulvasant shot. Or another anti estrogen she may suggest. A Is don't work on my tumors. 💞
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Grannax- no sciatica (thank god!). GP thought it was a bursitis of some sort. Really need an orthopedist to look at it, but day of rest seems to be doing it well.
Mara - we just did some stovetop popcorn this evening, but the special,super fine popcorn salt really makes it the best. When we lived in Minneapolis there was a 1950s theatre that still popped real popcorn with real actual 100% butter. They did special midnight showings in the summer of classic movies for $5 or something and the place would be packed out to watch Alien or whatever on the big screen. Loved the popcorn but that usually guaranteed a Sunday of stomach cramps
I did achieve a sponge bath and clean jammies, so feeling much better. Think we will attempt hair tomorrow.
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Sondra whoa that WAS a scary day! I'm glad you're getting better. I'm not sure WHAT is causing mine but I cannot wait for this MRI next week to find out. My poor back and body have really been through it this year with all the fractures and stuff. I'm able to wash my hair at the moment though so given your situation I'll consider that good. Did you find any good movies to watch? I love popcorn. Love Love Love!
Mara you sound good today and I'm so happy about this! I haven't walked in a few days just becuase of my hip bugging me. I really overdid things on Tuesday with a two mile walk and then a little hike in the woods. Been paying for that since. Tomorrow I'll try a mile and see how that goes for a few days. I'm always pushing myself and I really need to cut that out. It's just that like you, I feel so much better mentally when I get that workout going. Then I just keep going and then I hurt...
Grannax you must be so relieved to have gotten IR to agree to this. I'm jumping for joy! Well...not really. My back hurts. But you know what I mean.
I taught a few piano students today and had a couple of doctor appointments and the furnace broke. But I started the new treatment, cried for two weeks and I feel I'm out of the funk. Ya know....I think when you're new at all this some of us just think we're going to be the different one...like I'm going to have years on ibrance. And then more years on Ibrance until someone finds the cure for cancer. I got a huge smack down and I am officially humbled by metastatic breast cancer. But there is sooooo much the evil beast can't take away from me. Like cinnamon sugar donuts and my granddaughters' hugs and my beloved trips immersing myself in the forest.
It's November. It's cold. My house is cold but the furnace repair guy just arrived and it seems that he may have found the problem. I live in a drafty old Victorian house. When the furnace breaks I'm cold.
Hi GiddyUp!
DH just came up from the basement and said they've found the furnace issue. The wind caused a bunch of leaves and plants to clog up the intake and the furnace wasn't turning on. Whatever that means I do not care. Wheeeee!!!!! I will be warm tonight!
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I did go ahead and purchase microwave popper and bowl, some coconut oil and flavacol flavoring. I will be able to control the portion and it is less than it would cost to get the movie theater kind delivered and better than bagged microwave popcorn. Hopefully my digestive enzymes will avoid any digestive issues.
Moomala, my muscles are definitely sore so am taking advantage of the ibuprofen for sure. I did have a good day today. My brother and SIL are on their way over, hoping for donuts fingers crossed. Will be nice to see them. I am also glad to hear you will be warm. My bedroom is warm right now due to the portable dry rack, kicks out a lot of heat. Cats enjoy sitting in my room when it is so warm.
Grannax, I am also very glad to hear that your Y90 has been scheduled. Hope your MO can find something for you while not on chemo.
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Hello ladies
Grannax doing a happy dance for you.
Sondra I got a shower chair. I’m not using it right now but have had hip leg pain and couldn’t do anything without feeling like I was off balance.
Giddy up your life sounds exciting right now a kitten and horses 🐎 nice
Mara I used to love popcorn I still eat it but my tastebuds changed.
Mae I love your hotel room view. Hope you had a great time.
Candy you should be in bed by now. I stay up late but only bc I have trouble falling asleep. By the time I take every thing I can to make myself fall asleep it’s late.
Mel I hope you’re having fun today.
Moomala I hate the cold. Your home sounds charming. I love that you teach children and are still able to do it. Thanks for sharing your progression disappointments and fears. No matter how long we’re on any treatment we hate to change. We don’t know what will work and all of the remedies have SE’s that we find out about as we go along. Sending you a warm sunny hug from Florida.
Yesterday I did too much out all day doing errands, had tea with a friend and then food shopping. Today I was on a heating pad all day - back and hip pain. Tomorrow I plan to go to Orlando for dinner and a night out with family and friends. Sunday morning is the making strides walk. I’m gonna try to make the breakfast but I doubt I’ll do more waking than car to destination it’s at a stadium so parking may be hard.
Have a good evening all
Tanya
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Moomala, I want to apologize and recognize that I missed you going on a new treatment. I try to be careful about taking note of what is going on for others and I missed this. I want to say that I hope SE will be gentle or easily dealt with if you have any and may you get a long run from this next line. I also am glad you will have a cozy warm house.
I confess that I usually try to make sure I go back through the pages but we are such a busy bunch, I am sure I miss things along the way. Everybody here are in my thoughts and prayers and of course I am the pocket person for everyone as well.
I don't know how Mel and other posters addressing multiple people keep track of everybody but thank you all for all that you do. You have kept this a kind, warm and welcoming place.
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Thought I would report in, thanks Mel for sending me a wave and thinking of me! Life has returned to something more normal the last couple of weeks. I think my system is settling down now, I still get odd SE from the Piqray but nothing that can’t be managed. I’m ignoring the fatigue while getting ready for the Xmas Pottery sale at the community centre on Nov 9....I like these 2 vases full of attitude.... my style/look has changed the last few months so things are looking pretty good coming out of the kiln
I’m seeing marianelizabeth for coffee tomorrow. It is exciting to be able to get together with with one of our BCO sisters! She is coming to Vancouver for a visit. I’ll send you an update.
Be wel
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Here’s a cute box! I’m trying out some new glazes and shapes
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Pots I love your work! I am in awe! Pottery was so much more difficult than I ever realized. I did a beginning class last year but honestly the teacher was not very good and did not understand the need for her students to feel successful at something. I'm a piano teacher and I know good and well I will lose students and disrupt lifelong musical possibility in an individual by not making SURE that someone feels they've accomplished something in a lesson. I was sad to leave it and have admired potters, their tenacity and their creativity ever since. I'm getting back to my piano slowly too. Most of this year has been avoidance of it - working at my instrument , in my own time and space was bringing up grief for so long, but with counseling I was able to start experiencing music again.
How nice to be seeing MarianneElizabeth! A very warm hug from us!
Mara, no need to apologize! I began treatment with Aromasin and Afinitor - into my second week on it. I can't keep track of everyone either...I love all the signatures so I can keep track but for some reason I couldn't figure out how to put dates on mine. Anyway, I'm doing fine. I have insomnia of all things but my body's still getting used to the new drugs so we shall see what pops up over the next few weeks. I hear fatigue is a huge issue on this combo but so far I'm having trouble sleeping.
Have a great day everyone!
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Morning all.
Well I was in bed by 8:30 last night and asleep soon after!!!! Of course, normal tossing and turning with aches/pains, and up to bathroom a couple of times, but still a good nights sleep. Today is grocery shopping and laundry.
Mara- Hope you have another good day today. I have never really liked popcorn, but I am glad you got the popper you want. Enjoy it !!!!!
Grannax- Glad you got the Y90 scheduled. Let us know how the MO appt goes on Monday. Continued prayers for you.
Moomala- What day is your MRI? Glad you got the furnace fixed !!!! Glad things are going ok with the AA treatment. Hope you don't go from insomnia to fatigue. Hope AA is easy for you.
Pots- Love the pottery.
Tanya- You sound busy, girl. Enjoy but don't overdo. Rest some.
Check in again later. All have a good day.
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Achieved Clean Hair today, so that made me feel even better about the situation. I can bear some weight on the leg now with the crutches, and have been resting it completely, with breaks to get up and change position. Was thrilled The OC is on Prime this month so I can use the Fire tablet and not drag my laptop in to watch. It was very comforting to see 'home' during a wet, (really) windy day when I was stuck in bed. Also, is it just me or have styles really not changed in 15 years??
Tomorrow it will be time to attempt the stairs, just have to figure out the physics. Otherwise I feel really good and partner and I have had some great laughs this weekend. I'm not sure we laughed this much all year for whatever reason. I had to make him stop telling me about a guy at the pharmacy because I was laughing too hard and it was hurting my back.
Hope everyone has a great Saturday with lots of laughs and joy too.
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hi Sondra!
Laughter really is the BEST medicine!! I’m so glad you’re getting some good belly laughs in despite the circumstances of being quite a bit immobilized. Congrats on the head wash! Must’ve felt (and still feels) soooo good! Nothing like a good shampoo after a few days
all is going well over here. Just saying hello and it is a beautiful absolutely perfect fall day here in philly. I am going to go see the joker later with one of the guys I “date.” Can’t wait!! So glad it’s still in the theaters!!!
Almost done my workweek and then relaxation time!
hugs to all,Philly
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Hi all, I’m resting at home today after a very late night Thursday, about 3 hours sleep and a way too early flight back yesterday morning (still technically under the influence 🍹). So, early to bed last night and a lazy day today. The concert was great! Here’s a pic 😀
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Mae, I am glad you had such a good time.
Philly, enjoy your movie.
Candy, I did try out the popcorn, looked up on line when to actually put the flavacol salt on. Put the kernals in the little popper, added a tsp of flavacol in the kernels, a little of the wabash butter coconut oil to pop them in. Not needed but wanted to do it anyway and cooked them in the microwave. Popped every kernel. When they came out, I tasted them, was close to the movie experience but one last step was needed. Melted one more tablespoon of coconut buttery flavor oil and drizzled it all over the popcorn. No extra butter or salt needed. Was just the same greasy goodness as the movie theater for a fraction of the cost. I will do this no more than once a week as a treat since obviously coconut oil is not necessary heart healthy all the time. Super enjoyable while watching The Last Jedi.
Other than that, I simply did some laundry. I did not get much sleep as I was pretty wound up after my visit with brother and SIL. Good visit. She was sore from rope workout she did and I treated her with my TENS machine. Quite a role reversal because she is the one who usually cares for me when ill and did a lot of the medical transfers for my mother as she trained as a PSW. I was up until 300 am and woke up at 700 am so mainly took it easy. No exercise. Just a blanket I threw in the wash.
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I need people in my pockets tomorrow. I'm nervous about my MO appointment.
Even though she is aware that I have contacted my IR and why, I'm afraid she will be offended or in strong disagreement. I'm just hoping she will not strongly disagree, I do not like confrontation.
I know she will not like the idea of me being off any systemic TX for 3 months. I'm absolutely not going to do chemo during that time frame, my IR would not do the y90s if I was on chemo. But, I would agree to an anti estrogen or SERD. Not an aromatace inhibitor because they don't work on my tumors because of ESR1 mutation.
Therefore, I need to wear an outfit with lots of pockets. Thanks💞
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