My Husband, My Life, My Love, My Family, My Cancer
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Don’t you just love when a MAN (don’t care if he’s an onc) tells you something doesn’t hurt? Really? Are you calling me a liar? I’m getting to the point where those things are coming out of my mouth. I am starting to get really feisty about everything....how many times a month do I really need bloodwork? Let’s see if you could take a round of 14 radiation treatments....
Found out today that the areas they radiated were not the areas my onc wanted. What? I was asked will I think about doing more radiation? Nope....not right now. The poor rad onc looked like he was going to swallow his tongue. He’s obviously in trouble with my onc. Sorry...not gonna play nice. They are worried about a fracture at the top of my leg (femoral neck?). I said I’d think about it. I think I will consult with an orthopedic before I do anything else.
Runor....be your own advocate and tell them what you want / expect. These doctors work for us, after all. They don’t act like it, but in reality, you pay them for a service (ok, the insurance pays, but you paid the insurance). It’s totally disrespectful to be told that the breast causes no pain. I just hope I don’t take a swing at one of them
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Congrats moomala on getting cancer clear MRI results. I also have a Valium on board for that mri machine. I’ll try the aromatherapy with a Valium next one Runor.
Booboo looking forward to tomorrow.
Mel the grand puppy 🐶 is humongous.
Hello Tuesday and goodnight
Tanya
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hello lovelies,
Had a funky tummy today. Slept a lot. BooBoo and Tanya give hugs for me. Please?!
Runor~ how fitting you be the 12k posting. That's kinda cool.
Mae~You ok!?
Moomala~ congrats beautiful!
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hello friends! Mel sorry your belly is upset! Mine feels a little funky too! Slight headache. Had Lupron shot yesterday and started a new cycle of Ibrance yesterday too. I am taking a break for 3 weeks from the letrozole to see if that helps my aches and pains, then we will take it from there. Also scans coming up. We will include an MRI of my back this go round just to check and see. The scans still need to be scheduled but probably will happen in next few weeks.
I am on a group chat with 4 of my closest friends. I was explaining how AIs can cause pain...my one friend listened to a podcast with a doc discussing how 1) it is thought that the pain from AIs level off after about one year on them and 2) that I should maybe be doing more moderate exercise 5 days a week for 30 minutes at a time.
So then I had to explain that I do exercise 150 minutes a week, when I can, to help with the pain and fatigue and that unfortunately the doc who was talking in the podcast is incorrect about AI pain leveling off after one year of being on it.
It's exhausting to have to explain myself and this disease. It is so draining! It all just put me in a sour mood.
Could also be the damn Lupron and hormones.
Sorry slightly crabby and headachy here.
I did have a wonderful day! That whole group text just got under my skin a bit. I think my friends are trying to be helpful, but why is it so annoying sometimes?!!! 🤣😂🤣
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Runor, I have extra wine for us in case we drink it all. I am also including poutine in your pocket as well as I have not had that for a long time. I do deep breathing exercises while I am in since my MRI scans take almost an hour. Mind you, I am not all the way in like a person would be. Just head and neck. I inhale for a count of four, hold breath to a count of 7 and exhale to a count of 8. Relaxes the body and occupies the mind with the counting.
I did absolutely nothing today as my cold went into overdrive. I was coughing a lot so I got an expectorant delivered to my house and will take a cough suppressant at night. Advil also helps a lot. I just kind of sat around and waited for groceries to be delivered and was half asleep most of the time.
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Good morning Ladies. Reporting for any pocket duty needed today for any reason. I am hoping to feel More awake today. Could it happen?? Perhaps. Hoping everyone is doing well.
Tanya and BooBoo~I want pictures. Lol
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Tanya and Mel my MRI was not cancer clear - just to clarify. I just had CT scans last month so I know what's in there and they're all on the MRI so I just didn't mention those. I'm more worried about the neural foraminal stenosis which means there's a nerve in there getting pinched to death and the bad side of that is that the nerve could die and I'd lose function. My ortho is terrible about using MyChart to allay my fear but I'll see him in 3 weeks and meanwhile I have nice PT exercises to keep my mind occupied. I "think" it is okay for me to just keep moving and use some heat on the back but like I said he is terrible at MyChart answers. He has told me before if I have questions, please make an appointment with him to talk. Ugh. I hate it. His office visits are like 550 dollars. I think a simple MyChart appeasement of my fears isn't too much to ask. He's probably ticked off that I MyCharted him about the MRI. I'm 63 years old. In the old days the doctor would call you back and let you know over the phone what was up. These days not so much.
Philly, part of the loneliness of this disease is just what you explained about having to explain your disease to people. They don't get it and really they do care about you but I'm convinced down deep that most people really just want to fix you. Partly that's out of care and partly it's out of fear for themselves. It's the self-protective part of humanity that serves them but not us.
Runor today is your mamm! I love calling it that. The Mammbec (haha) will be opened and breathing by five pm for me today. Here's hoping we'll be clinking to some good news. Not a fan of the squish and glad I don't have to have them any more. Am thinking of you and hoping that once you get in there it's quick, painless and you're on your way before you know it.
I really like the idea of the aromatherapy in the machine. Good grief with that noise you need SOMETHING to concentrate on. I don't think I mentioned that my husband has tinnitus and even with the earplugs he could not do that machine. He shimmied himself out before the techs could get back into the room to move the table. And he walked out. He said he'd never ever do it again.
Mara Poutine. omg!!!! We have a Poutine food truck at all the markets and festivals here and she is just swamped with business. I've never had Poutine in Canada - It will give me a giant stomach ache I'm sure but I will get over thre one day and let's have some ok? I drive through your city to get to Detroit and visit my mom.
I'm off to the dentist this morning. A crown in front feels a little loose. It's making me wonder if this dexamethasone swish they have me on for the next few weeks might be messing with my gums. They feel a little irritated around this crown. So I'll have him check up on it today. Dental x-rays are not my forte (I'm a gagger) but hopefully they won't be too bad.
Hope tummies and colds are feeling better today!
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omg Moomala I am also such a gagger. Smells get to me also. I believe that since it's hormonal cancer I have. I have certain memories that remind me of being pregnant. The hormonal craziness and smells that I could nothandle. Even now. If someone has bad body odor. I can't handle it. I have to walk away. So aroma scents sound wonderful. In your pocket!
Runor~ in your pockets also sweet friend I adore you!Love to all! ~M~
Tanya and BooBoo Meet today, so jelly! But have a blast you lovely friends 💗
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Boo - that is my greatest fear with this rads stuff. All the computers and systems and info zipping around - are they really REALLY sure they've got it right? I can repeat my name and DOB until Im blue in the face, but if the Onc sent down the wrong instructions or something got missed in the chain through simple human error well.... we are the ones who pay for it.
Philly - sorry to see you are feeling the pains and fatigue right now. I wonder if that doctor had spent a year on AIs (umm, guessing not?) or maybe even some goserelin (not unless hes had the 'tate cancer!). I figure all these medical oncs were the chemistry nerds in high school and live in the world of clean equations on paper that balance just so and anything that they can't stuff into that clean box they kinda handwave away.
Mara- I hope you feel better soon, or at least had some treats in the grocery delivery as something to look forward to
Up for rads tomorrow (Boo, that post kinda didnt help). I stumped around the yard a bit at lunch, did dishes, and vacuumed so feeling more with it, but the right leg still isn't fully operational. I woke up this morning feeling dragged out - I dont know if I have some sort of low grade version of a cold or what, but just have postnasal drip and a tiny cough from the drip. And feeling kinda achy/agitated/nausea. I like to lay down in a little bit but the cats seem to have taken up residence on my bed 
Dealing with more bs at work doesn't help, but whatever, working on a different private project that is more fun, while I monitor 'work email'. Also have to go yell at scheduling for the surgeon hospital because no, I STILL cannot make this Friday for the results of my lymph node biopsy at the beginning of October. Even if I COULD walk Im not hauling myself up there. Let's just forget about it, shall we? Oh, and we didn't get the house. Super bummed but the stars weren't aligning right, so Ill take it as a blessing in disguise for now.
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Sondra~I really hope your leg starts to feel better. I realize that no matter How much we fight through one day. We pay for it the next for sure. I am wondering what treatment you’re on? Sounds an awful lot like how I feel. I haven’t scanned since May, my onc has me doing bloodwork and xgeva Friday. So I’m ready for that. Usually it’s pretty easy. I just hate the infusion center period. Those smells have a way of setting off my triggers. PTSD. I am
Not set to scan until March. This will be the first time I have been scanned in nine month intervals. Feels good to be away from it all, but the mind forgets. Then it’s rough to go back to it!! And on we go! I’m with you can we say, let’s forget it!
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Mic - currently only on goserelin and denosumab, first monthly shot for both. I start I/L next Thursday. Honestly, Im hoping that stuff doesn't make me feel any worse than I have for the past four months! But bracing myself for bone and joint pain as that seems to be the worst that I have gotten so far. Still sleeping like a log and minimal hot flashes (though mom says she didn't get many when she had menopause).
I do wonder if my hormone levels were messed up before all this started. I had the breast surgeon asking if I had ever been pregnant, abortion, miscarriage, stillbirth, etc. which seemed a bit excessive. But i also had a lot of signs for low testosterone for years before the cancer. My mom even advanced the possibility of perimenopause way back in 2009 for some reason, although I dont remember why she thought that at the time.
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Had about the best lunch EVER with Tanya, who couldn't be more lovely. We talked through so many things...I felt like I was looking in the mirror. We all are so connected because of this rotten disease, but to have a chance to meet someone as nice as she is, I'm claiming a great day indeed! She is truly my sister from another mother now!
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Everyone is different Sondra. I had so little trouble on I/L, but I did have achy hips and legs here and there. Nothing I'd really complain about. Most certainly nothing like the back pain I'm having now. I never had hot flashes on letrozole but I'm having them sporadically on exemestane. Surprising to feel them again. I went through meno 20 years ago! I sometimes wonder if we older women have less bone and joint pain on the AI's?
I felt worse the two weeks between stopping Ibrance and starting Afinitor. I was quite emotionally upset then because of the treatment failure after only five months, but I could also feel that I was ill or something. I feel really great on A/A (except for my back which is really harshing my buzz) I think you'll be pleasantly surprised with I/L and I hope it lasts you a good long time!
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Booboo and Tanya you two look absolutely wonderful! What giant smiles!!!!!!! I'm so happy to see you both!
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Hello my sweet beauties !!!! 🥰🥰🥰🥰🥰🥰
My heart is filled with such joy at the smiles of you both. This makes me so happy. Thank you for sharing your day with us
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Hi all.
Quiet here. Church secretary volunteer thing every morning still. And odds and ends in the afternoons-- housework, bills, groceries, etc.
Routine appt with MO next Monday. Will discuss PET results (she called me already with the results) and how I am doing. Shots--- Xgeva and Lupron--- and port flush next Friday. I try to keep the injections on schedule, so I am going back in to the office next Friday for those. Don't see the MO day of shots, just the infusion side of the building. And, remember, I live in small town and get treatment in my town. So no travel, no big deal to go to the office.
Boo and Tanya- Looks like you had fun !!!! And, I bet nice to meet and talk in person.
How nice it would be if we could all gather in Mel's Living Room like that.
Sondra- Hope rads tomorrow helps you.
Hugs to all.
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Thank you, Moomala, Mel and Candy. It was truly one of my best days ever. It just means so much to sit and talk with someone else who has (is) walked in your shoes. There are no words to describe how much I appreciated our conversation. I can’t wait to have lunch again after the holidays.
She brought me the most beautiful bouquet of flowers. What a very nice surprise. I love flowers. Thanks again, Tanya. May God bless you in a special way today
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Hello All, not been posting on this thread, although I'm active in others, but lurking here! Love that you all jump from one bit of stuff to another - lots of what you say resonates. Scans, family, meds and side effects and just the whole crappiness of it all.... but done mainly with humour and acceptance that we are in this, like it or not. We aknowledge when it it gets hard we support and when we have good news we celebrate. I have the dreaded scan results next week.... and a bottle of Bollinger, which I've kept for 2 years, ready to open if the results are good.( I know full well alcohol is not good for us, but hey... 2 years!) It'll stay unopened if not. Hopefully you'll all be in my pocket on the 27th and I'll be in yours when you need it!
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Karen~Hello darling. Welcome to my second home! I am definitely available for some Pocket duty. I would love to be part of that celebration!!! I am sending you great vibes and thoughts. This is like my living room everyone comes and goes. They stay and leave and come Back again Later. We are like a little family. We would Love to Have you be apart of our little Family as well. 2 years Wahhhoooo! 🥰
Mae???????
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Booboo and Tanya, lovely picture. Glad to hear your lunch was really good.
Moomala, next time you are in London or coming, let me know. I'll take you to harvey's. They have my favourite poutine there. It is so good.
Karen we will all be in your pocket on the 27th and whenever you need us.
I am still getting over this cold, I sound like a smoker when I cough but I can tell that the cold is starting to wane a bit so happy about that. Did not do anything else today. Bit of housework and laundry of course. Took it easy otherwise.
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no nap for me today so I’m about ready for bed myself!
My mother is sharing her family Heirlooms with me and my DD. This is my birthstone surrounded by diamonds It’s an amazing ring. It has been so lovely seeing all Of this history. Some of these rings have been passed down 85 years at least if not more. I’m so enjoying the stories behind them from Family , I never got to know! It’s special to have them Now.... just wanted to share my joy!0 -
Hi Karen! I'm a wine drinker myself. My oncologist told me just keep it to 3-4 glasses a week and it's good. I would miss wine so much ugh. Will be there with you on the 27th!!!! Runor I have had my glass of Malbec this evening and await your report.
Mara! Poutine date. Absolutely! We're doing it!
Mel the ring is absolutely gorgeous. That color!!!!
Celebrating Thanksgiving with my local support group tomorrow. Its an amazing group of women and reminds me so much of all of us here.
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Hi! Sorry for being absent but I’m here and doing fine. I’ve been busy the last couple days, DH and I have a big housecleaning project going on, trying to clean and clear out stuff before heading to the cabin on Saturday for thanksgiving week. Once we return, we’ll have a traditional thanksgiving with friends.
I’m sorry, I haven’t caught up but I did see the pic of booboo and Tanya's lunch, glad you ladies had fun 😀 Anyway, more later...
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Booboo and Tanya, those are the genuine smiles of people who have connected. I love that pic!
Mamm was typical where they crunch the boob so hard my lower eyelids peel down and my eyeballs begins to dry out. A new person was getting trained today and of course there was a lot more poking and prodding and demonstrating than normal. The regular tech pointed out my lumpectomy scar and noted how almost impossible it was to see. I said that's because the radiation burned off the top layer of my skin and when it grew back it was all nice and healthy looking over the scar, tight and pink. I said I tried to talk the radiation ladies into giving my crow's feet and jowls a good zap or two but they felt it was not a good idea to just randomly radiate my face. They were no fun. The mamm ladies thought this was a very funny story. Some people are easily amused.
I got the mamm, waited tensley to see if I would be called back in for more shots or ushered into the other room for unexpected ultrasound. Neither. They said, go home, see you next year. I was so releived I almost wept. Then I thought maybe I was jumping the gun a bit, but screw it, I was going to enjoy that feeling while I could! Hub tok me to a cafe and I promptly chugged two cups of coffee. Weeee! Coffeeeee! I knew all you lovely ladies were in my pocket with me. Well, in my purse, had no pocket in that ugly robe. But I could hear the party happening in my purse. I believe Micmel was standing on a table, dancing and twirling her bra over her head when I left. Woo hoo!
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Runor,
You crack me up! I can see Mel on that table dancing...Too funny. So glad the mama is over. Even happier to hear you are good to go for another year. Good stuff. Celebrate. You deserve it
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Hi Mae,
So glad to hear all is well. I hope you and DH enjoy your time at the cabin. It sounds so awesome. I love to go to the mountains and enjoy nature at its best. My sister from TX (and her DH) are coming to see me tomorrow, and will stay through Thanksgiving. I am so excited. She’s an awesome cook, so I’m really looking forward to whatever she makes, along with a turkey, of course. Hope your turkey day is good too
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Great news Runor! I'm glad THAT's over!!! Love that image of Mel dancing!
Hi Mae! Looking forward to hearing what's been going on with you. The cabin sounds like a wonderful thing to do for T week.
Enjoy your family time Booboo! I have no-one coming for Thanksgiving and all next week off work. We have two dinners to attend - one with the grandkids and another on T day with my sisters. Quiet week otherwise and I guess I'm okay with that. I've had such insomnia lately - it'll be nice to just veg out for the week. I have a student recital coming up with some of my own practice to do, programs to create, etc. I am tempted to drive down to Philadelphia and surprise my sister for a night or two but we shall see how my tiredness level is next week.
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Good morning ladies
The luncheon was fantastic. The energy spilled over and a couple of people wanted to know more about us. Since we were laughing and talking incessantly cutting each other offf and finishing each other’s sentences like old college girls catching up.
Booboo was so gracious to treat me to lunch and a brownie that we shared and still couldn’t finish with toasted marshmallow and vanilla ice cream.
I read everything before posting and don’t remember much of it.
Moomala sorry we got the results wrong just forever hopeful.
Mae how’s the gas line project?
Mel the ring is gorgeous
Runor great mammo! Micmel has been known to dance on table tops and I may have joined in.
Sondra f sorry your leg is still weak.
Karen we’ll be there in the 27th
Grannax where are you and the modeling pics?
Candy this Monday result appt or next?
Mara laundry for me too
Hi philly
Tanya
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Well, today is a tougher day with this chest cold. Loading up on Buckleys Mucous expectorant. Also decided since I am not short of breath that I need to use my treadmill. Walking is not bad for a cold and am just doing a song then sitting down. I rested yesterday and felt really bad, both physically and emotionally so I need to look after both things today. Won't feel better without doing anything and don't want to cry about how bad I feel. I am whining on here for sure but everyone here inspires me to do more than I would do normally given your more difficult circumstances.
I also found a show I used to love, I think because of the theme song. It's the Greatest American Hero with William Katt. I watched it as a kid and figure I would try it again. It's on the Roku channel on my Roku and is free to watch. Made me happy watching something from when I was younger. It cheered me up from a very depressive and self pitying day and made the rest of it better yesterday.
I am pretty good at dealing with my cancer in a more matter of fact way and am largely not depressed about it at this time. When a chest cold or SE hits me, then I go off the rails. So stupid but there it is. Hopefully the illness lifts by next week. Off to get more buckleys, it tastes really, really bad. Think about drinking vicks vaporub. It works very well though.
Hope everyone else is doing OK today and in anybody's pocket who needs it. Runor I am also glad things were clear for you. I am glad I no longer get mammos. I used to have dense breasts but thankfully, after chemopause, my remaining breast is not lumpy like that so would probably not be as painful as it was before. I also found out colonoscopies are not needed for me since I am scanned all the time. They would be able to find colon cancer early with all the surveillance I get now.
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Grannax I scrolled back and saw the pics. You both look lovely. It’s such a great experience to take that walk with you and your sister.
MJHjan nice to see you. This thread moves fast I almost missed you.
Tanya
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