My Husband, My Life, My Love, My Family, My Cancer
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Soooo good to see you Goldens! We missed you….! Glad you Checked in. We are worry warts!
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@shanagirl Glad you are back from the hospital, that definitely sounds like quite the ordeal. Hope that you are feeling better soon!
@irishlove I can definitely understand the depression, you are facing a lot. Depression medications can take a few weeks to really see the effects but if you don't notice a difference soon, I would ask for a change in meds.
Keep sending pictures of the animals, doggies, deer, cats, whatever! They all are so cute.
How reliable are people's tumor markers usually? I know it is different for everyone. One of mine, the ca 15 3 has been consistently low and in the normal range. The other ca 27 29 was elevated and has gone down, which I think is good but also don't know how much stock goes into them.
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Good Morning Ladies. Of the Living room. I’m still sitting in bed with my coffee ☕️, on my iPad. Thank you all for your caring concern and pocket duty. I love you all, even though I forget so many names.💗 I’m going to try to get to you though.
@mara51506 Dear Sista! You inspire me so much‼️🥰 I love your energy and constant motivation. I will be following your example today. I’m going to do laundry, cook breakfast for my pugs. Clean and organize my bedroom, and closet, because they’ve gotten kind of cluttered since last month when I last did it all😊. I also want. To organize my cluttered medications draw in the bathroom. I’ve always. Been so anal about keeping my bathroom immaculate. It’s big and one room is the double vanity, and the other part of it is the “water closet” with shower and toilet. And I will also clean my little birdie’s cage in my bedroom. She’s my little Budgie who hangs out all day on top of both her cages. I spoil her so much🥰
@micmel I can relate so much to stepping on that doggie rope..ouch, it hurts when that happens. I am always stepping in their little dog bones, because they take them out of their toy bed (all their toys are kept in a corner of my room in a little soft doggie bed🐾, so they always are helping themselves to their favorite toys and bones, and leave them all over my bedroom floor
@wren44 HI Girl…loving hugs💗 @dodgersgirl I’m so saddened to hear you’ve lost your father. Keep healing and coming to the Living room. @denny10 glad to see you, don’t worry about not always posting. I have those days too @cookie54 I hope you are feeling better soon. You just reminded me I’m due for a colonoscopy soon. My last one was almost 5 yrs ago. @threetree Hey girl I’m so glad to see you🥰. @candy-678 . I’m thinking of you, don’t stress yourself over those judgy church women, they are not worth your energy. Also about Covid. I didn’t worry about it the first time and won’t give it a thought now. My own immunity and ability to survive so many colds and flu over the years, gives me the confidence to tune out the fear frenzy. @irishlove I’m sending you gentle hugs and breath prayers today. I’m so sorry you sit 8 hours in the chair waiting for sleep,so you don’t have to think. I have known the deepest of depression in my lifetime, and dealt with mental Health issues. So much I could share with you but today is not the time. I will only say that during my deepest depression and felt myself spiraling down, even though I would say in my mind tha t I have no reason to be depressed, and would feel guilty about it. I had such a good life and family, it was before stroke, cancer, and knee replacements, and metastatic diagnosis. But this deep depression was giving me feelings of life wasn’t worth living ideations. My therapist diagnosed me and recommended DH bring me to a hospital for treatment of Post Traumatic Stress Disorder. I had 3 relapses, and spent more time in the PTSD treatment, and a few years of therapy… I guess I got all my issues and anxieties healed in therapy, and anti-depressants,and anti anxiety meds. I have not gone thru any severe depression since then. Sometimes I get days of feeling a little blue and isolate from the forum due to cancer, but feeling blue is so different from the deep mental depression I went thru years ago…….so enough said, I’m done with deep depression and therapists, I’ve learned what triggers my feelings of depression, and how to stay in the present, not the past, nor fear the future.. It helps me thru this Stage IV bullshit😉. @illimae I love the picture of the sweet mama doe and her fawns. What a blessing to see and experience😊. @intolight Hey there my sister💗. @sunshine99 Sending love and hugs girl. Sending my love to everyone else I may have missed. I love you all♥️🩵💙🥰……and your fur baby pictures🐾😉🤎🖤🤍🐾
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Hi all. In pockets for scans and support. Thank you all for your support for me and others. This gathering place is the greatest!
A couple things stand out to me on posts. One was poster in rehab and can't receive chemo, even though they are on Medicare. I'm really shocked and saddened to hear they are allowed to deny you that care.
Shanagirl, thank you for your openess in sharing your story. I know the guilt feeling. The MO (whom I adore) said I'm doing so well with regression that he felt the meds should work for 4 to 5 years. And then this happened and I just cried in his office and told him I can't live this way. Tremors take their toll, hard to type and I feel like my body is on fire. SO what is physical and what is mental? What is treatment or drug related? I just gotta keep my head up till Friday appt. DH is pretty well in tune and having been a LEO for 40 years keeps pretty good tabs on me. Shana you truly overcame a lot and I admire you and so many others on this thread.
Goldens, I was thinking about you and missing your posts. How about DivineMsM? And Exbronx gal, and a few others?
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@irishlove apprently when a rehab facility (aka skilled nursing home) accepts you, they also are expected to cover medical costs. Since chemo is expensive, they can’t afford to. Medicare simply stops until your release from rehab center. Something about these rehab places are given funding and they do cover some things like port flushes but can’t afford chemo coverage. It has been explained to me a few times. Can’t say it’s crystal clear to me as I get angry at the idea that I have to go without chemo treatment while trying to rehab so I can return home.
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@dodgersgirl I suppose this may sound ignorant, but if they won't cover chemo then why do they not transport you for treatment to your oncology dept? I recall my aunt being in rehab and they transported her for a funeral. I also don't understand if they accept Medicare, and chemo is covered by Medicare, huh??? Geez, don't blame you for being angry.
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Got scan results today, no active cancer in brain or body 😁
There is still an “enhancement” in my brain but it’s unclear and unchanged, so watching it but not really concerned.
Heading home tomorrow and getting ready for friends coming to visit next week.
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illimae, so nice to hear positive news. Celebrating with you from afar!
dodgersgirl, nice to hear from you too. You are in my daily prayers for all you are going through.
shana, you have been through so much. You matter to us.
keris, my tumor markers are not reliable. My first onc ignored them but my current one takes them monthly. Don't panic about them. I consider them as a hint to look further if necessary.
Thank you to everyone for caring. This forum rocks!
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Illimae - Congratulations on the good scan news!
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Yay! Mae. Congratulations on the excellent news!
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Good Evening Ladies of the Living room. I’ve been reading and catching up. I love this forum because everyone really confides in one another and listen too.
@goldensrbest I’m just so glad you popped in‼️😊
@keris113 I’m so glad your Onc does tumor markers regularly. Mine does also. My CA/27 was always stable at a 25 to 26 for 13 years after treatment and 6 month followups and lab work with my Onc. It was actually my CA27 Cancer Antigen test that alerted my Onc to call me and tell me to get in immediately for scans which confirmed Bone Mets. He called me to tell me the CA27 showed a sudden jump of traveling breast cancer cells in my bloodstream. They had jumped from a steady 20’s to an 84., when the scans showed th cancer cells had metastasized to my sternum, ribs L&R, Thoracic Spine, Lumbar spine, sacrum & tailbone, he did the blood biopsy, which obviously showed the cA27test jumped from the traveling cells from the original primary tumor from when I was Stage IIIA back in 2009. So, @keris113, don’t worry. Your Onc watches you when you do your Labs. I’m thankful for those Tumor marker tests. Mine ave been going down since treatment, which goes along with my scans.😉
@denny10 , Sorry it’s been a rough few months for you. I’m jus so glad you checked in💗
@threetree , thank you so much for checking in and your caring concern about me.
@emac877 I’m so relieved your scans were positive results, it makes me feel good to know when some of you ladies are doing better thru your struggles.
I just want to say to some of you who haven’t been here and then stop by, it’ so encouraging to hear from you. I don’t really stray from this forum because everyone is really connected here and each day new experiences are discussed with each other.
@micmel thank you dear girl for this Livingroom. I just can’t even imagine having to go to facebook to talk about our struggles and successes and also losses♥️🌹
OHHHH‼️ and I was so glad to see @rk2020. Hi girl. Lease check in more often even if you’re only reading and lurking, just do a drive by and wave hI🥰 Love you all Good night ladies
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I am so glad to have All of you. It’s important to have a place to vent and speak the truth and feel cared for. I hope lurkers realize we don’t have to always remember everyone by name and worry about keeping up. It’s ok to just pop in to let us know you’re around and at least ok. We understand it’s tough
hello Mara and Candy. Hope you guys are good. Tanya hello to you too. ! Good to see Denny and Goldens. Dodgers of course !
hope you All sleep well
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Wow it's crowded in here. Too hard for me to reply to each, but you know I wish you all the best.
About the medicare coverage at rehab. Could it possibly be the difference between regular Medicare and an Advantage plan?
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hello darlings, I haven’t read any threads since July. Popping in to say ‘hey’. Miss you, I love you. I am on the edge of the annual check ups. My mammo came back clear. I had an appt yesterday for some dizziness x 3 weeks but am thinking electrolytes or scar tissue from my AN in 2009-2010. Referred for an mri in the next 2 weeks. I see my surgeon tomorrow for my annual from my dcis surgery tmro. I’m sure all will be normal. I am getting tired of work, ready to retire, I hope I can last these final 18 months, but with honesty, if I could go tmro I would. 👮🏻❤️ Nikki
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Great scan news, Mae! I think it might be time for a little Body Movin'? 😁
Dodgers, I'm so sorry for all the loss you've had so recently, and I agree with the outrage that you can't get your treatment while in rehab??? That's ridiculous.
Irish, I hope you feel our love and support. Thanks for keeping things real here, we need it.
Shana, glad you are home, and good grief, ear wax can cause all kinds of problems, glad that got cleared out!
Emac, sending you love. Wondering how you're doing.
Mara, keep slowly building strength, when you can. I've got some 5 pound weights sitting here by the couch, and every so often I do some slow arm reps with them. Every little bit counts.
Mel, hope you haven't stepped on any dog ropes today!
Today is nine months since my sweetie passed, went to a pub out on the coast and had a good lunch at a place we'd been to years ago. I miss him. People care about me, but not in that same day-to-day way, you know? It's not like my friends care about what I'm having for dinner, or if I'm going to Target and do they need anything...all the little stuff. I'm grateful to have been someone's one and only, and it still feels unreal at times that he's gone. Physically. He's always in my heart, of course.
Love to everyone, everyone here, and hey, let me know if any of you need anything from Target?
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@sf-cakes good morning , my heart is with you today because of your missing your sweetie since passing 9 months ago. I am so sorry.
Loving thoughts going out to @molliefish @gailmary @micmel @weninwi and so many of you here in the livingroom. I love you all and grateful to @micmel for opening this living room for all of us to come and be encouraged whether we post or lurk. It’s wonderful to see you all each day. 🥰💙
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I am so relieved they caught that murderer this morning In Pennsylvania. It was relatively 45 miles from my home where they were looking for him. It was 14 days he was loose! Good job law enforcement! Kudos
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Irish, your comment about breaking down and crying really struck me. I just wrote in my blog about playing the game of “Whack-a-mole” and trying to manage one symptom after another and trying to manage “just one more thing.”
I know most of you will understand that sometimes the hardest thing to hear is, “Everything looks good.” THEN WHY DO I FEEL SO BAD???
Dodgersgirl, I’m sorry you’re in such a rough position – needing rehab, but not getting the rest of the treatment you need.
Mae, I’m happy to hear of your latest scan results. Enjoy the visit with your friends.
Intolight, my last (retired) and current MO both order tumor markers, but never really comment on them. They never changed much with me, even with my Stage IV diagnosis.
Sf-cakes, wow – nine months. Am sending you warm hugs. I wish we could all go to that pub with you and raise a glass to your sweetie.
Waving hi to everyone. Still waiting to get an earlier appointment for the swallow motility study. I published my latest blog post yesterday. There is always that moment of panic when I hit “Publish” and then “Publish” again. Did I mess up? Are there mistakes? Punctuation all OK? Yikes. I have a friend who will copy edit for me. He found a couple of things to fix, which I did.
Love to all,
Carol
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Carol, I just read your latest blog and it resonates so deeply! Your analogy to Whack-A-Mole is spot on. Everything you said fits me (except your current swallow difficulties.) Today I just added the neurologist to my arsenal of one more target. It gets fatiguing. What non-C people also don't understand is what I call disease fatigue. All of these battles leave one with a huge burden of fatigue. Not only do we fight to live, but we fight to be able to fight on. Some days I have the verve to fight on while other days I just want to hunker down under my favorite blanket and let the world pass by hoping someone will wait on me or just let me be.
There is so much pain and heartache in the world. Our little corner is no exception. Today is one of those days where I have no energy to mention everyone and I know you all understand. So I will close with a prayer for everyone who visits here knowing you at least understand my tears and my fears. God bless you all.
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Intolight, EXACTLY! The fatigue is real and there are days where I count the hours until bedtime and I can (hopefully) fall asleep and escape for a few hours.
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Sunshine/Carol, I just read your latest entry in your blog, and loved it - Just One More Thing indeed! And it seems there's usually at least a little more shit that can be piled on. And you explained the unknown so well, with the "it could be this, but we can't rule out that" (you said it better) that we all just have to... live with.
Intolight, disease fatigue is so right. The word fatigue isn't strong enough to express all of what we are going through, I had proposed fatiguosaurus a while back, but that was too long to say... it fatigued me! Lol.
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Illimae - Congratulations! I am so happy for you. We needed some good news around here.
Sending hugs and prayers to dodgersgirl and irishlove. I think about you both a lot.
sf-cakes - I'm sending hugs your way too. I can only imagine. I would definitely go to Target with you.
Things here are improving. I skipped chemo last week per my MO and so I am scheduled tomorrow for #6. I don't know for sure if we are going to do all twelve but I have not heard differently. So I will be officially half way tomorrow with the Taxol. I finished 5 days of Levaquin yesterday and for the last three days have felt better than I have in about a week. I still have some endurance issues when I'm up and doing things but I don't seem as short of breath, just weak. Labs today came back looking good.
My brother has been great to come over and help. My parents are really struggling right now and having his help with them has been huge. Mom has a CT tomorrow to see if the antibiotics worked or if she needs surgery for the abscesses in her colon. She has limited mobility so is needing a lot of help right now. My dad's confusion is worsening so he is going back in to the doctor also. My brother came over in tears yesterday after being over there. I think everything going on with all of us just hit him hard and he needed to vent it out. The last several years he had been going through some hardship and wasn't able to be around as much due to work and so I think now that he's seeing it more it's a little bit of a shock and reality is a real punch. I told him we'll just tackle all of this together one day at a time.
Hugs to all. It's been beautiful here in Southern Oregon but we are due for a few days of record breaking heat again. Boooo. I'm ready for some fall weather. 🍁🍂
Here's a recent shot of my dad and I. I couldn't resist a father/daughter bald shot!
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I love the picture of you and your father. Your smile is lovely. You are a strong woman. I always had a cap on, I was never that self assured. I love it that you are. Your smile is contagious ! Thank you for sharing. I know someone who needs to see that pic who is going through the same thing. I hope you continue to feel better. Hugs to you
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emac, oh my. You're really going through it. Sending hugs. Love your picture!
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Good evening ladies
Congratulations Mae and Molliefish on good scans.
sf cakes I’m sending hugs for that 9 month loss anniversary. I’ll take the target stroll through housewares.
shanagirl I’m happy that you’re home.
mel my daughter lives in Chester so I’ve been following the fugitive thing. Ugh. I am glad he’s capture one less thing to stress about.
sometimes I attend the BC support group on Wednesday zoom. We had a discussion about all the “emotional lifting” that we all do trying to keep family and friends at a distance to spare their feelings or their pitying looks. Mainly for me I try to keep my mood sadness depression anger exhaustion to myself so that my DH doesn’t worry. Yesterday I overhead my DH talking to someone about how he was feeling helpless in this MBC journey. Deep sigh.
The depression and low moods are part of this journey for me. I try to keep something to do in the long/short term future as that’s what helps me looking forward to something besides blood tests, infusions, injections, scans, repeat. Target is an option.
I was going to recommend viols services with a mask. One lady sometimes wears one. I think in the near future I’ll be joining online bc once school is back the germs spread like wildfire.
Emac I love that picture with your dad.
waving hello to rk2020, Mara, into the light, Goldens, dodgers, sunshine 99, wren, Runor, three tree, galimary, Candy, cookie and Denny and of course everyone that I missed.
Tanya
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Waving hi to Tanya! Hello sunshine! Good to see you today
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Yipppeee for good scan news mae and molliefish, treat yourself!
Mel Glad they got that murderer also, definitely seemed scary for all those surrounding areas. Felt like he was going to do something desperate once he stole that rifle. Thank God nobody was hurt.
Emac In your pocket for chemo tomorrow, sending strength. Love the father daughter duo, beautiful.
sfcakes Sending you a big hug, can't even imagine how it feels losing your other half. I think you never get over it you just learn how to live with it.
sunshine I'll have to pop on and read your latest post. You have a gift to write and express perfectly.
Tanya great to see ya!
Goldens Good to see you too!
Denny Sorry it's been rough lately, praying for some improvement soon. Hugs.
Well waiting to talk to gastro, colonoscopy showed colitis leaning towards infectious in nature. Waiting on stool cultures to get more info. MO put me on hold with Keytruda and can't resume Xeloda this week. Thank God I am feeling much better than a couple weeks ago when it was at it's worst. I didn't even know what I was dealing with. Although I hate these breaks in treatment it makes me feel so vulnerable without my "chemo crutch". Hope it doesn't last too long!,
Waving hi to anyone I missed .Love, peace and strength to all here.
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@emac877 My heart is with you and your family. I just adore that picture of you and your daddy. Hope you are able to get thru the rest of the chemo and start feeling much better.
@sf-cakes Wishing you many more good memories that make you smile and lessen the sadness of losing your sweetheart. 9 months is a tender time so be gentle with yourself.
Waving hello to everyone and hoping for a pain-free evening as possible. In pockets for scans and any and all support that you may need. I caught up on reading and wish all that are struggling a better tomorrow.
Spoke to a mental health worker from Humana today. She's working on finding a local therapist that accepts Humana. She offered a therapist or physchiatrist. I feel therapy is a good fit, but I will need in-person as my hearing is awful and I have to see someone's lips. I must have said excuse me numerous times to the counselor, so she now understands. Hopefully tomorrow we will be able to connect with a group from nearby for an appt. At minimum, it's a step forward.
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Denny, glad you to hear that you are finding inspiration to keep going, I am working hard for sure.
I am glad to see goldens as well, makes me happy to see people.
Shana, my wee house will always look cluttered as well but that is due to size, any progress is good progress and you inspire me as well.
Candy, I agree, don't think you should stress about the church women either. Look after yourself in the way that you want to.
Mae, happy to hear that you are NED. I generally show an enhancement as well when I have an MRI too. RO is not concerned.
Mel, I was good yesterday but no consistennt working internet til evening.
Molliefish, I feel you about working with cancer, had it not gone after my brain with such agression, I would have kept working myself but could not after. Now I work and live off disability and surveys and games.
SF cakes, mostly liking the bridge pose. Depending on the sleep I have had could be anywhere between 3 to 10. I did some stretches and also a bicycle type movement while in bed as well. Will look up more of those.
I am sorry about your DH Sfcakes but glad you got to have a good lunch as well. I do the same on Mom and Dad's birthdays, avoid being sad that way and enjoy a meal.
Emac, love the picture of you and your dad.
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