My Husband, My Life, My Love, My Family, My Cancer
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Hello lovely Lynnwood~ I wish you double the time on XGeva and May it bring you to NED. Until those white lab coats come up with a cure. I am interested to know about your experience with XGeva. I'm not convinced that my rib pain isn't the cancer dancing into my rib cage. My DH says he's heard me coughing while being sick this past month. He said you cough Hard!!! Not to mention lifting my father into and out of his bed! Pushing the wheel chair. Dressing him, putting his slippers on muscles I haven't used in years honestly... I'm hoping against hope. Hope it goes away. Doesn't seem like it is though. Drives me crazy!
Today~ I received a text message from someone I am close to from high school. I d had a lovely visit with her and my bff two weekends ago. She went for a mammogram and got a call back. One mass was benign... and the other needs a biopsy. She's so worried and she knows I have cancer. So I was the first person she told. I am worried about her. When they told me biopsy. I was scared. I kinda knew. Mine was done on the spot. Maybe there is hope for her. Just maybe.
Philly~My Dad is in an assisted living home. But I visit him almost every day. When I get there. He wants to go outside and have his fresh air and smokes. I know sounds weird. Fresh air and cigarettes. It takes a lot out of me. To run to get his coffee to fix his pillows. Sitting outside for hours. It’s a long ass day. Get food he likes. Because the food their he doesn’t like its endless movements
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Grannax, looks like we will be Xeloda buddies! Hope we both get a long run on it! Lynne, yes 6 pills! 4 500mg and 2 150mg every 12 hours. 14 days on and 7 off. I think Grannax is on a similar dose. My onc says I have to see her every week, I’m assuming it’s to check on my side effects and monitor my blood counts. Thanks to all who offered kind words and support! It’s always hard to change treatments, especially due to progression.0
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Lynnewood and Grannax, wishing you well on your new treatments. Hopefully Xeloda is good to you and easy on you! Grannax, that had to be maddening that your records didn’t arrive and it took you to get them yourself. The value of comparing new to old being lost is a real shame.
Micmel, is it possible to shorten your visits with your dad? Maybe not drastically, but enough to get you home with a bit less exhaustion? Your dad is important but so are you!!
Parry, thinking of you!
Mae, keep up the travel, love the pics!
Hope everyone else is doing well or ok, and you all keep posting here. I so appreciate this place.0 -
Grannax and Lynnwood, good luck with Xeloda. Grannax, great you are finally back on a clear course. I am a huge Xeloda fan. I took Xeloda for 14 months - for 12 months I took 3000mg 14 on/7 off. I then switched to 3000mg 7 on/7 off and progressed rather quickly. My MO told me about the studies that indicated there was no difference in going to 7 on/7 off but for my personal tumor makeup, I think there was too much recovery period for the cancer on the 7/7 schedule. If I were to do it again, I would have lowered the mg and stayed on a 14/7 dose. However, we are all different. Grannax - 3500 mg is a high dose but maybe your MO just wants to beat down your mets aggressively in the beginning since you haven't been on an effective treatment in a while. I hope that you take this drug for a very long time and that the side effects are tolerable!
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I drop by everyday to read and keep up with what's going on. So many seem to be wading into the shark filled waters of further treatment. I have nothing wise to say, but you all have touched my life and I pray with all my might that something good and peaceful and strong touches each of you. Hugs to all.
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Lynnwood~I Hope xeloda is good to you, we have had all enough side effects to last a lifetime. It’s my wish that you feel no side effects and do well endlessly on it. You’re amazing . My nurse friend , I’ll be asking you questions. Lol hugs my friend.
Rosie~Hello lovely. This has been such a difficult tired week for me. Ok I’m always tired who am I kidding. I have taken a three day off break from visiting my dad. I felt badly. But I need it. I’m exhausted. I am going tomorrow with my DH he’s going to help me get him outside and enjoy a little air. I could sleep a year away. Honestly. Tyeerrrrdddd!
JFL~Hope all is well with you today! Always nice to see you ! Happy Friday!
Runor~ Hello lovely friend, I am sending hugs and love to you I adore you !
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Hello, I don't have a husband but looking for a thread where I can talk about the emotional side of dealing with Stage IV. This seems to have a variety of topics. I was doing okay for a couple of years on Femara/IBRANCE, then Faslodex, I had initially started with Femara only and had progression and added IBRANCE. It appears though I'm 90% ER+ that the AA's don't seem to be too effective for me.
The disease was limited to nodes under my sternum and near my lung and I had been fairly optimistic. In January I was DX with brain mets and had targeted radiation. I switched Afinitor/Aromasin and my next scan also showed progression. Started Xeloda a few weeks ago and was very sick with it.
I'm beginning to really despair. How do you keep your spirits up with this disease when setbacks occur? I will resume Xeloda again tomorrow after appointment with my MO. I fear the side effects. I fear that it won't work and that I've burned through so many of the treatments. I am divorced and live alone with no family near me. I kind of long for the days when I thought my biggest worry was my three month scans which for two years went well. Now the future seems so uncertain. I have major anxiety and am depressed and having difficulty getting meds that will address that. Anyone that has anything to share on coping skills would be much appreciated. I do go to a counselor most weeks. Hugs to you all.
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Welcome Dorimak 🙂 I know you’re going through a lot and all on your own too. Brain mets was a tough pill for me too, it really felt like the end until I took a step back and realized it wasn’t, not yet.We’re all going through difficult stuff here, whether it’s progression, family relationships, depression, etc. I can only say that what works for me is staying active, sometimes gym, sometimes walks, it gives me time to think of other things or nothing at all. I believe we are so close to some real breakthroughs medically, we just need to hang on to hope.
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Dorimak, you've come to the right place. This is a super supportive group of women and a safe place to speak of your fears. We will ride the wave with you, cry with you and cheer you when you have good news.
ABSunset
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My DH and I went to see my father together today, it was lovely and the weather was very nice. Then my step mother showed up and took her usual narcissistic ways. Talked the entire time about her family and her this and her that. We wanted to upchuck. We kept looking at each other like. Is this for real ? I don’t understand how she can just waltz over and just blabber on and on. She’s annoying plain and simple.
My nephew is getting married and it’s the sister that I just recently got back and since I just threw a wedding, I have some things left over like my cylinders and votive candles. I want to help my sister and they are going in on halves for the rehearsal dinner and they need centerpieces. I am giving them both. But it’s for my sister. To save her $150 or more... she works really hard. I’m sure the step
Mother will make that about her as well. How long I deal with her depends on my father. I don’t want him to go any where. But I’m literally exhausted. Beaten. Tired. I’m honestly running on fumes. Tomorrow is my day for visit. Wish me luck. My bones are giving way!
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Welcome Dorimak! You will find incredible friendships here! Lots of support and advice too! What one of us needs to know... someone here knows it. We share and advise without judgment. I just started Xeloda this week. As far as coping, I just tell myself that I am not dying today. I try to enjoy this quiet time of my life. I read a lot and take my time with everything I do. Slowly organizing and decluttering. There’s always someone here to listen too.0
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Micmel,
You are obviously a natural giver... it is so clear in reading your kind, encouraging words to everyone on this thread. I just want you to know that is very clearly who you are to an observer. I am sure you want to have impeccable strength, energy and the ability to assist your Dad *all the time*, but I think it is wise to rest and pace yourself and realize YOU need care too. For example, if Step Mom arrives, you can LEAVE. And go home to have a nap, or spend time w your DH. Your Dad has company, and you don't have to experience SM in large doses. Every time you conserve a bit of energy it is another source of fuel.
My dad is 91, and he can be incredibly demanding. When I visit, there is lot of fetching things for him, whenever he has a whim for a drink or a snack or newspaper it's a 4 alarm fire... urgency like a two year old. Which is tiring! My Mom has catered to it for 65 years so he has never learned to do anything for himself or wait patiently. I think it's poor behavior and I grant myself permission to say "You will need to wait because I am in the middle of something else right now."
Does your dad have text/ face time technology on his end? That might be a way to "peek in" without having to make the whole schlepp. I admire the loyal way you are caring for your Dad; it is very compassionate and generous. Just make sure you get some nurture too!!
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Dh and I took advantage of yesterday's sun and mild temps and hiked a woodland trail in a park about an hour's drive north near Youngstown, Ohio. The park is lovely, you can see a bit from the photo. There are three small lakes with trails around each one. The park also has a glorious botanical garden that we visit when in the area, and this April it's blooming all over with daffodils and tulips. This is one of my most favorite ways to spend a day. Good for the soul.
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I thought I would start X yesterday, but the specialty pharmacy needed more clarification about dosage. So, looks like it will be Tuesday.
Dorimac this is the thread that has no boundaries. We talk about anything that is life while we are trying to fight for our lives. I don't have a husband's either, he died from pancreatic cancer nine years ago.
We talk about children and grandchildren. My favorite GS is competing today at the Regional Boys Gymnastics Meet. Six states are involved, yes the best seven year olds in six states who are at level five will be my GS competitors. YIKES Medals today? Doubtful, Doing better than your best? Probably. GS is my hero, he does not get intimidated by more advanced boys, he wants to do HIS best. Yep, proud Granna.
Dorimac. I was DX two year four months ago, got 18 months from IL and y90 for liver mets. I L failed in December. Tried AA, big fail for six weeks, two weeks of X, changed MO. Waited six weeks for new scan, New plan etc. So here I am, just like you wondering , will it work? My new scan showed lots of progression in all areas I had gotten to stable. Now look worse that when I started over two years ago. I feel like I'm starting over. My mets are in my right lung, pleural effusion, fluid in lung, also in mediastinal nodes near my esophagus. My liver has several large tumors again. Can't help being discouraged. I have anxiety issues, duh, most of us do. I take Cymbalta 120 mg every day. It has been very helpful for me.
For down days, I try to write a lot here, writing therapy and stay quiet a day or two, knowing this too will pass. It's going to happen, I don't try to hide it. I am the happiest when I'm with my grandchildren. But, there have been some issues lately that are still being resolved. My friends are always there for my. I lean on them.
I find joy when I can encourage some of my friends here, they are my support group. I write on several threads, Liver mets ladies ( which I am going to re name to " liver monster fighters"! Xeloda thread, also, local treatments thread (y90).
If you don't have kids, post pics of your pets, or flowers, vacations. Anything goes here on this special thread Micmel started. I look forward to getting to know you.💞
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Micmel, you my friend need to start taking care of yourself! You can’t pour from an empty cup. Caring for a parent is hard enough but dealing with cancer at the same time is brutal. Could you possibly make a schedule with your step monster where you alternate days? Santa is right, if she comes.. leave . Eliminates a stressful situation. We just worry about you. Divine, great picture! I agree that spending time in a beautiful peaceful place is a wonderful way to spend the day! I have been enjoying just sitting on my deck. Fresh air and sunshine make me feel instantly better! ☀️0
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Divine, what a great picture. Looks beautiful there.
Grannax,how long have you been off of treatment? I am on a treatment hold in preparation for possible Y90 (meeting next week with IR). In the meantime I feel SO good off meds, I am not sure they'll ever get me back on (but, of course I will). Good luck with X. It's pretty easy. I got just under a year, but others have been on it much longer.
Hi Micmel, leader of this pretty amazing thread. You are a wonder. Don't run yourself down. We need you.
ABSunset
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Dorimak~Hello sister and welcome to my second home. We have good days and bad days. When we have good days. We dance, we sing, some travel, some garden,some paint, some sleep, some walk the beach with their mothers and wonderful family, some read quietly alone, going to another place entirely. If only for a brief time. We live in each day.... each day.... sometimes we may push too much. (Guiltily as charged) I do it for love. I hope you know that like all have said. You speak what you need to let out, whatever it is. Whenever it is. I'm very worried this time out about progression myself. I have a nagging cough that won't go away and some wonderful accompanying rib pain as a bonus. So I worry. Unfortunately worry comes with the territory. I have my ugly cry. (Trust me it's uuuuggggllie) then I try to tell myself I am not dying this second. This day. Like Mae said. Everyday they find new pathways of interference! We just have to hang on. Sometimes, it's to each other..... so welcome to our home. ! I hope you'll become part of our family as well!
Divine~ Hello beautiful lady out in the lovely weather. I agree. Such a nice day yesterday. You're so pretty ! 😌
Grannax~Go GS, your hero has already medaled in my eyes!
Mae~GOT tonight. What's the menu?
Sunset~Hugs to you my sweet friend. I left yesterday as soon as we got him back into his room. I just didn't want to abandon my dad, so much as to have him worry, that someone wasn't getting along etc. he may be frail. But is with it. Mentally! I'm tying sooo hard to pace myself.
Lynnwood~I guess I failed the check up huh? Lol I promise I am spending the rest of the day in bed. Oh yes I am. But (hides her eyes under her blanket) I have another day tomorrow, the princess without a country, (step mother) has a party to go to. I can't leave him alone so my DD and I are going together. Again. Then I'll have a break Wednesday And Thursday. I'm tired I cannot lie. I cannot pour from an empty cup is soooo true. My problem is, how do I make the cup full again? 💔😞
Santa ~I have always been a nurturing person. I guess it's because I never knew what that was like until I had my own children. They became my world and nothing would harm them. I feel that way about my entire family good or bad. I realize sometimes the chord needs to be cut for my own sanity, when those chords need cutting I'm very good at that. I will not accept toxic people in my world. Whatever time I have left I will spend. On My terms , as we all should !!!! I appreciate you all keeping me grounded, as to not forget about my own needs. I've always tended to do that. Always. Hugs to all my sisters.
I just really want to be a good daughter that he knows without question, was there for him. Everyone has to have someone to count on! Right now he has clean blankets because I've washed them. He has his cocktail, because I made it... fresh water. He's had his smokes and is watching the majors happy as a clam. I did that for him, so when I nap. I can say I've done all I could. Always.
Much love ladies ~M~
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Dorimak~I take Effexor, and I wouldn’t leave home without it. Helps me tremendously ! I absolutely must be on an anti depressant, this is rough stuff to handle. I am one to always say, if it helps or could help. May as well try it, because we don’t have anything to loose at this point. We are already fighting for our lives. Effexor has been the best thing for me that I have tried! 🌹🌹 for you !
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Oh man, we have a great menu planned for tonight’s GoT season 9 premiere, can’t believe it’s finally here! My chef friend volunteered to cook, it’s Cashew Chicken, Egg Drop Soup and Cream Cheese Wontons. I bought a small chocolate pudding cake for dessert. Now I’m off to look for a pair of shoes (red slip ons, perhaps converse).
I’ll post dinner pics later 😋
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GAME OF THRONES !!!!! It was on my bucket list to be here to see the series end. Wasn't sure I would, but..
I made it!!! I can die now....lol..TOTALLY KIDDING.
Whoooooooo!
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Ladies~ I found this today and I think we all deserve the chance to go shopping now and then! I ordered my set earlier today..... I don’t mind the wait. Select for yourself. You won’t have to pay a dime...! They look so pretty !
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Grannax your GS is the winner today on this thread. Thanks for sharing today you made me feel happiness.
Divine your trail looks gorgeous and your description is divine.
Micmel I liked the way you summed it up, you can sleep peacefully now that you know you’re dad is comfortable. Get some rest now until your show comes on.
Welcome Dorimac these ladies here are amazing.
Lynnwood while comforting others you share and remind us all how special you are.
Santa B wow you’re dads 91! Wonderful. I know old people get away with bad behavior bc you can’t really say anything harshly to them. You found a nice balance. My dad lived to 84. He passed 3 years ago he always said please and thank you for everything. He was more appreciative in his old age and a real hum dinger in his youth.
Mae enjoy dear sister the food the show and the company. Looking forward to pics and red shoes!
A beautiful S that’s funny. If I said that to my husband he would get so upset. He likes living in denial for now.
Waving at JFL, Runor, and Rosie
Have a good day all.
Tanya
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Divine, I 💕 that photo of you and your great smile!
Tanya, how good that your dad learned to be more polite and sweet as he got older. I'd like to do that myself.
Dorimak, welcome here. All this Stage 4 circus is what we talk about here. There are also folks with different stages that pop in too.
I've been thinking of everyone.
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I sit and start round #30 of ibrance and fear progression for the first time. (Always fear it but never had a reason before really) my ribs...Neck...back....even my feet hurt. I ache, every single bone I have hurts. I feel even more tired if that is even is possible. I realize I am no different from anyone else. “Your time Is gonna come” LED ZEPPELIN....I seriously feel so sore.. even laying in bed hurts... 😞🥺
My DH insists since my blood work tells all that I should calm down. But that’s like telling a fish not to be in water! I am doing a lot more things everyday. I am full hands on taking care of my father. Moving muscles I haven’t used in years. But still, should that be going away by now? Ugh! The mind F*ck it is...
you ladies hold on to me. I might slip into one of those holes.. again.
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Micmel, for what it’s worth, I’ve been experiencing whole body pain these last few days, and I’m on my off week. I told my daughter that lately the “off” week isn’t a reprieve but more pain. Maybe with being on your off week and all you are doing it’s just taking a bigger toll on you. I’m a couple months behind you, I start month 28 on Wednesday. I’m watching and listening and will try to not let you go to the dark hole!
❤️ Suzy
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Stillivin~I was just on my off week as well. Just started my new month two days ago actually. I am hoping you and my DH are correct! That it’s just muscles and my doing more than I am used too. It’s always some ache or pain. I appreciate you talking me off the ledge!! Hugs to you beautiful friend ! ~M~
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Micmel muscles and cumulative ibrance se’s. I’m with still and your DH
Tanya
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Gosh, I feel like I've suddenly got a whole community around me. Thank you all for your responses and support and I look forward to being part of this group! I've often took a sneak peak here but thought since I didn't have a husband I wouldn't belong. I love how you all talk about life in general beyond the disease. Not easy too for those dealing with other challenges on top of the disease but a good place to vent. I look forward to getting to know you all.
Michmel - When I was on IBRANCE I slowly developed refux that got worse over time and still is an issue even though I've been off it a year. It manifests as an annoying cough depending on what I eat. If I eat chocolate I get completely hoarse. I couldn't get it fully under control with the proton pump inhibitors or another med that the gastro guy prescribed. I was just living with it and avoiding a lot of the foods that trigger it and finally found a herbal supplement. This time of year can cause nasal drip too. Hopefully it's something benign like that. Take care ladies and here's to a good week for all.
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Sadly no new shoes today, they didn’t have my size in the store, ordered online instead. My feet are 11 but I’m only 5’5 barefoot, should’ve been taller I guess.
GoT was ok for an opener but dinner was awesome.
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