My Husband, My Life, My Love, My Family, My Cancer
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Jumping in for pocket duty too but I’m low on sweets and snacks, so I’ll be there for Rosie, Tanya and KBL tomorrow with sugar bee apple slices.
Wishing everyone a great nights sleep and a delicious breakfast after scans.
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Rosie- I hope your appt with your MO goes well and you decide on a treatment you can deal with. Have they given up on finding the source of your leg/hip pain? I hate that you're in so much pain and their only solution for you is pain killers.
Pocket duty for Tanya, KBL, Emac, and LivingIVLife
KBL - How nice that your daughter called you for an impromptu lunch date! And yuck to the cold weather. Our weather has been up and down, so 70 today, but we'll have highs in the 30s and lows around 10 later this week.
So, I met my new PCM and really liked him. He wrote me an interim script for my anastrozole (because I hadn't transferred mine from Florida) and put in my referral request. So, now I just wait.
I had a problem at the pharmacy - something about this manufacturer's code for the drug not being in the insurance's system. I talked to 3 people at the insurance to get that answer. I finally gave up and just paid for the scrip (it was a cheap one) and will go mail order on the next one. Before anyone says anything about government-run health systems not having that problem, this is a government-run system. Grrr.
BUT, I got to see my daughter today, so I'm a happy girl!
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SeeQ, yay for your visit. I know how much you looked forward to that. Sorry about your medication issues. They are always so fun. Not. Our weather should be sunny and around 64 today. I’ll take it.
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Pocket duty for all the scans happening today and throughout the week. I will receive CT scan results over the phone this week.
Not up to much but going to phone the pharmacy that I will go pick up my prescription instead. I was going to have them deliver it but I need to get out more than I am doing.
Laundry, housework and some walking, less time on the couch tp clear the cobwebs should do. Also need to find out about donating soup I thought I would eat but have changed my mind. Have been trying to add food to my basic beans, beefless ground and spinach combo but not super successful though I did get some eggs and crumpets as well, eggs and crumpets are a nice breakfast or lunch. They don't stay with me long but are quite good but the soup was a fail. Have no desire to eat it at all.
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Pocket Duty for those who need it. Thinking of you all. My time is coming soon. The slower the better . Mara be safe on your travels of walking. today is my ds birthday,we had a wonderful dinner yesterday to celebrate. I had so much fun with. My kids. Both together laughing. I honestly was happy and not thinking about mr cancer. It was something I needed. Having them together is like eating or drinking. So I am a happy bear. Being with your kids is medicine for what ails me. I hope you all had a nice weekend.
hello Mae! Living SeeQ. Hope kitty is well. Goldens hello! Runor hi ya! Hugs to you lovelies…..0 -
Mel, I will still wear my cleats and will try out my walking poles for a longer outdoor walk.
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Micmel, I agree with you. Being with family, especially my kids (one kid, daughter, but think of her hubby as a son) and grandkids, is the best medicine. Spent an afternoon recently with 4-year old granddaughter making sugar cookies. She loves to help make the dough, roll it out, and cut out the cookies into stars, unicorns, and Mickey Mouse. So, there was lots of flour, sugar and pieces of dough everywhere. She stuck with it through the whole process, including clean up. Most importantly, we had a good time with lots of laughs.
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runner, what a story. I'm so glad you found someone who is loving and true – no matter what.
mel, I'm forever grateful to you for starting this thread. It is good for my soul.
Candy, as always, thank you for the pocket duty list. I have my MO appointment and Zometa infusion this week. I expect it go well (or at least routinely).
KBL, stay safe and warm. These are such crazy weather times. Glad your power is back on.
Living, have fun with your son!
mara, I hope you are well today. I always look forward to your posts.
runor, what a great idea to add traction to your boots. I remember my mom, many years ago, when she got a new pair of English riding boots. They were and slick, so she went out to our gravel driveway to scuff up the soles and to give them a bit of traction.
Kiko, sourdough starter sounds good. I've tried a few times, but our house is too cold. I should probably try the "lightbulb in the oven" trick.
Moco, it sounds like you had a delightful time with your GD. Mess and all!
Waving "good morning" to mae, SeeQ and the rest. Forgive my not mentioning each of you by name.
Happy Monday to all!
Carol
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hi everyone, I had a rough weekend on the new treatment. Super fatigue and sore
going to catch up on everything here now. Blood work tomorrow & if it's good, next dose on Wednesday. I'm not loving it right now but I hope I can adjust to it0 -
Moth, Sorry to hear about the rough start on your new treatment. I hope your body will adjust or some fixes can be implemented.
(SeeQ, good question!). My MO appointment today did have quite a bit of time devoted to my hip pain. Some of that was her own experience with a torn labrum and that she remembers crying when she had to get out of her car to stand up. Back to me, she had her nurse set up an ortho appointment and prescribed prednisone and a muscle relaxer. I know steroid relief is temporary but I still welcome it. She also tried to troubleshoot my ongoing tummy troubles without using Imodium. We’ll see how Pepto does. My now Thurs ortho appt (started as Fri) is the same day a high impact snowstorm is expected. I hope we can make it! DH isn’t worried about the drive and a has a lunch plan for Friday that he’d really like to attend, so we changed it knowing about the snow coming. Yikes. He’s done nothing for 4 weeks other than cater to me, fetch me things, and listen to me whimper, so I think he needs something out of the house and upbeat. Xeloda will be my next treatment as soon as insurance approval, etc. I’ll still be prescreening for the trial I mentioned a few weeks ago for consideration down the road. I heard that of 14 recent applicants, 13 didn’t have the mutation being studied (a certain notch protein) and 1 is still pending. Doesn’t sound too promising but I’ll give it a try. Thanks all, for the pocket duty. I appreciated having you.
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Oh, moth, I'm sorry you're having such a rough time with this new treatment. I hope it gets a little better as your body/system adjusts to it.
Rosie, your DH sounds sweet. I'm glad your MO was understanding about your hip pain. Here's hoping it can be managed along with your tummy troubles.
Carol
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Sunshine99, thank you so much. I love the support from all of you wonderful ladies.
Moth, I’m sorry you had a rough weekend. I hope the treatment does the trick and gets more tolerable
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Yikes, every time I revisit this living room there are new problems mixed with a smattering of smiles. This is our life. Nausea, pain and anything else this crappy disease can throw at us. Damn cancer. I want more smiles and warm fuzzies for us. Thanks Mel for this room. Sometimes that's the best warm fuzzie ❤️🥰
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Thank you all for the kind words. Right now I feel like for whatever reason I need the extra support just due to lymphedema flare up and the unrelenting neuropathy pain in my feet in my lymphedema arm and across my entire chest. I can only describe it as a terrible burning pain. I have had it ever since my treatments. It is so damn fatiguing. I take gabapentin for the pain but I can’t take during the day when I’m working. Someone asked me if I had tried Lyrica. I haven’t. Has anyone tried that one? I know my elderly mom took that for awhile after having shingles but she said it didn’t do much.
I just have to ask. What is pocket duty? I hope you all don’t mind me dropping into this thread. You ladies all sound so strong and I feel like friends who haven’t gone through treatment look at me and think all is well….
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Pocket duty is when someone is having treatment or scans, we hop in their pocket and go with them for support. It's showing each other we're never alone.
I’m so glad you felt comfortable enough to drop in. We are all here for support. I hope you make it a habit to come to Mel’s.
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Hi everyone, I've been reading along and commiserating and cheering with everyone. Halaven has been pretty rough, the fatigue is off the charts and I've got permanent pins and needles in my fingers and feet, I've had to get a stylus for typing as my fingers are so sensitive, so I've kept away because I don't have anything fun or interesting to share. I've got a petscan today, so we'll see if it's been worth it. Stay safe everyone and welcome to our new visitors to Mel's living room.
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Runnergirl26, pocket duty often mentions snacks too. I don’t remember exactly how that started but we sometimes include goodies to share with everyone in the pocket as we tag along.
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I was wondering about the sweets comment especially because it looks like everyone lives all over the country. I wondered if you guys were mailing treats to each other! I sometimes don’t think I ever got over chemo brain fog…
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oooo runnergirl… now there’s an idea
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Rosie - I'm so glad they're trying to figure out the cause of your pain. I hope the prednisone and muscle relaxant get your inflammation and pain under control and help your body work on healing itself. I hope the weather doesn't upset your appt and dh gets out for his lunch on Friday.
Moth - I'm so sorry you're having a tough time with your new meds. Let's hope it's just a temporary adjustment period. Even if it is, I'm sorry you're having to go through it.
Kittykat- I'm so happy to hear from you, but not so happy the Halaven is knocking you down. In your pocket for your pet scan today.
We ran a couple errands to be ready for the storm - so we don't have to go out. Hopefully, dh will get a little time to go out by himself tomorrow before we're stuck in the house. We've been having a lot of together time. Plus we may be making another trip to Oklahoma on Friday, if the roads conditions aren't too bad.
I hope everyone affected by the blizzard is finished doing all right, and everyone in the Midwest is ready for the icy snowstorm on the way.
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hi all, I hope you don’t mind me dropping in. I’m speaking as my mom’s advocate (I have mainly been active on the brain mets thread). I can’t even begin to understand the pain and emotional struggle you all face, but I wanted to hop on here and give you a big hug and so much gratitude. My mom can’t speak English and thus I’ve been navigating her cancer journey with her, trying my best to voice her concerns to our doctors.
Even though we’ve been given the news that there’s nothing more to be done and she has only a few months left, the women I’ve spoken to on here have given so much more clarity, knowledge, and emotional support that we feel more in control of our situation than we ever did with our doctors. I followed Mara and Susan’s advice on seeking a better doctor, and we’re just waiting for our appointment with him next Tuesday.
In the meantime with our current doctor we asked on the next course in treatment and get this: he tried to scare us with the only two options being chemo or hospice, but when we said we’d try chemo he prescribed my mom Verzenio. Talk about lack of transparency!
Anyway, thank you for being a source of empowerment and strength even as you all continue your fight. I cannot thank you enough, and I hope I can pay it forward somehow.
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SeeQ, i can totally understand the together a lot with your husband. I am so fortunate. My husband retired, and it's been a little bit of an adjustment being together all day. Not in a bad way, but …. Anyway, we have a vacation home. Whenever I feel him getting cranky because he hates it here, I chase him and the dog to the vacation home. It benefits us both. He is in his happy place. We may be moving up there in the next six months. Then he will permanently be in his happy place. It makes a huge difference. It's in the country.
ChipotleAddict, welcome to Mel's. I'm so glad you have another appointment for your mom. Please keep us posted how she's doing. She has a wonderful daughter. I am on Xeloda. Verzenio is in the same class as Ibrance. Xeloda crosses the brain barrier. Have you asked about that? Mae knows about it more than I do.
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Hello all. I have been reading along, but just not commenting. I have been depressed lately. Not just my situation, but my Dad is 95 and failing. He fell last week. Not too hurt, just banged up. Lots of family issues right now. Also, my texting buddy is sooo busy, not faulting him, but... He doesn't really have time to talk with me. So no one to vent to. Except here, of course.
Rosie- I hope Xeloda is kind to you. And you get some pain relief. I had a labrum tear of my hip last summer. Still limping around and in pain. Sigh... just more for me to be depressed about... I hope you get some help at the ortho appointment.
Moth- Sorry you are struggling so. I hate that for you. Hopefully, it will get easier.
Kitty- Miss seeing you. I hope your PET went ok. When will you know results? I hope you get to feeling better too.
We are supposed to get ice on Wed/Thurs. I hope it misses us. I don't mind snow, but ice is bad. They are saying we could have power outages. Good grief. I went yesterday and did some odds and ends-- pharmacy, got gas in truck, went and got a book at the Library. Mainly drive-thru stuff due to Covid/other germs. But I got stuff done in case weather turns bad.
Oh I wish Mel's Living Room was real.
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Chipotle,
I love your attitude and the support you provide to your Mother, especially when you talk about paying it forward. What a wonderful daughter you are. And keep up the good fight!
One thing that you wrote struck a nerve: it really angers me when I think about anyone, especially a doctor, who tries to manipulate or in any way treat your Mom differently because she can’t speak English. I have to watch myself because I have been angered before and have jumped in where I probably shouldn’t have when I see someone in that situation. Where is his compassion? Where is his oath to treat all patients the same regardless of race, color, etc. I applaud you for your love and support for your Mom and what she is going through.
Anyway, please come back often. I can’t tell you how much I have learned by the women on this thread. Good stuff
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SeeQ, I hear you! My DH worked away from home as a rock band tour bus driver about 10 months per year for the last 20 years, until 2020, when Covid essentially retired him. He does try to get away for a day or weekend on occasion, more for me than himself.
Chipotleaddict, I think I’m the resident brainiac on this thread.Xeloda does cross but seems to work best in combination with anti-HER2 meds. I’m my case, my new brains mets have been minimal but progression continues, which is disappointing. It’s mostly meant to control the brain mets in a way that allows for treatment by radiation, which it has. I think I just need to better manage my expectations.
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Candy~I'm sorry your texting buddy has been busy. I know you get used to having that outlet. I get lonely too when my DH is gone for two days. For work. I'm sending you a hug.
Reporting for pocket duty for anything needed.
Runner~good to see you back again. We all kinda lean on each other as best as we can. Someone is always around to share thoughts with.
Moth~good to see you Been wondering how yournew treatment was going.
Hi Kitty!!
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welcome to the thread chipotle, what a lovely daughter. Sweet girl.
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Moth - sorry to hear about the side effects. I really hope your body adjusts really soon and/or you figure out some tricks to feel better.
Rosie - good luck with the new drug. I hope it works super well and easy to tolerate.
Chipotle - so great that you can help your mom. Welcome!
KBL - a vacation home sounds nice. Moving sounds exciting.
Kittykat - positive thoughts regarding your scan. Hope that new med is working and your body adjusts to it so it's more tolerable.
Runnergirl - I have lymphedema in one arm. I eat 2 Brazil nuts a day. They have some nutrient that helps lymphedema. Not sure if that will be enough to help you, but if you aren't allergic to nuts, it might be worth a try. I also wear a special compression sleeve and glove at night. The material looks like an oven mitt. My lymphedema specialist ordered it and got insurance to pay for it.
There are more comments to make, but I can't go back a page without losing this. Wishing everyone the best!
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Hi Mel, I'm glad you had a lovely time with your kids for ds birthday. Candy, I'm sorry you're having a rough time with your family and I hope your dad recovers soon. I get the results of my petscan on Thursday when I see Sanju and if it's still working I'll have my chemo the same day.
Living, I'm glad you finally got to see your son, Moth I'm sorry your new treatment is so rough on you, hopefully it will settle down some. Laurie, I'm glad you're happy to be moving near your sisters and your new apartment sounds wonderful, it's hard to leave a long term relationship but you have done the right thing IMHO, you really do sound so much more relaxed and happy. Hi to Mara, Tanya, Runor, Mae, KBL, SeeQ all the new ladies and all the beautiful women here in Mel's living room ♥.
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Kittykat- good to hear from you! Hope your scan will show good results
Mae- you are the brainiac on this thread, in more ways than one
Mel- so glad you had a happy time at your ds birthday
Chipotle- what a wonderful daughter. I believe we all need an advocate. This is why this thread is so supportive and knowledgeable. Good luck on your mother's appointment next week.
SeeQ- oh how I wish at times I could just have a day to myself without hubby. He does work seasonally May to October but the winter can be very long......
Candy- I'm glad you got your errands done. Did you get the paperwork signed at the lawyers?
I finally had my son out yesterday. Lots of hugs and kisses which warms my soul. Today I went for blood work for my appointment tomorrow with the MO. Will also find out scan results.
I know I will miss many names so a big hello and hugs for everyone!
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