My Husband, My Life, My Love, My Family, My Cancer
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50sgirl, Edinburgh is beautiful. I have been many times. This time is just a quiet visit with my daughter, her husband and 2 sons. They moved house recently to wanted to visit for a look!! All is lovely. I'm not very mobile so little shopping outings only, and nothing that will bore the boys. Back to Spain Monday.
Bigbhome, hope your problems are solved. You deserve some calm in your life.
Micmel, sounds like a review of dosage would be good. You need to get some pleasure in life. Big hugs x
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Bigbhome, I really respect that post you made, about quality of life. Sometimes all we have to offer each other is our version of the truth and you spoke yours to Micmel. From the heart. I want you to know I was moved by your honest sharing.
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Lynne, they’ve gone up every month since I started on Ibrance. 174 CA25-27, but this month my CEA has also gone up over normal limits for the first time. I’m on round five, day 12 of Ibrance. Wish my onc would let me try one of the others, but I se where others have gone to weekly chemo then come back after it’s under control.
I’m not mad anymore, just losing hope. This is exactly what happened to both my Mom and my Dad. Just nothing ever worked. I’m starting to really be scared this is going to be my fate too. I kinda feel like we must be cursed!!
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Bigbhome-I'm glad your husband is doing better, sorry for all that you are going through with the in-laws! I'm also glad that you will be getting away for a week! Craziness!
Micmel-Glad you got to spend time with your family this weekend!
Beautiful day here yesterday. We took the trike out for a short ride in the evening. DH raked up some of the leaves (out of my rose garden anyhow), yesterday morning, and thankfully, the black flies weren't out yet (although friends of ours that live 20 min away, said they were out in full force there!). They are here for about a month, bites are worse than the mosquitoes. It's a northern New England thing. Lucky us! We went out to lunch with those friends (she and I were attendants in each other's weddings 33 and 35 years ago, we try to get together at least every few months). It's so sad for us to see how downhill she has come with her MS. She was diagnosed at 28 (right after she had her 2nd child), and has been doing well up until a couple of years ago (she's now 53). She went from walking with a little assistance, to being wheelchair bound, having a very hard time speaking, having to be fed by her husband, her muscles are so tight, he has to bend her, to get her from the car to the wheelchair. We had some laughs (which is what we all need!) She recently started the medical marijuana to relax her muscles. She said she hasn't noticed a difference, he said that her hands aren't shaking as much, and she can sometimes feed herself a little, and put her makeup on by herself. They increased the dose yesterday, I hope it helps her more. It's so sad to see my friend this way. I'm sure she thinks the same for me.
Rainy day today (at least it's in the normal, 60-70s temps). My in-laws are back from FL. They want us to come up (an hour drive each way) today, to celebrate my fil birthday (it was the 30th). It's my first day off my steroids, which is usually when the nasty side effects from my chemo begin. I'm still debating. I told him to go up with our daughter. I;d rather be home.
Enjoy your Sunday!
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I think I’m done, girls. Thinking seriously about throwing in the towel. I really have no reason to keep this up and try to do all this alone
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i know we all feel that way one or another. I know I do regularly. It's freaking scary shit. Relying on some doctor to help us live. I feel that way a lot. It's painful existence always fighting everyday and you're allowed to Be tired. You know I love you Gracie. I understand that feeling. I told my DH this weekend. If I have progression that is out of the bone. I won't be going on any... chemo IV again. I've had quite enough of that already. So when you say you don't know why You fight. I understand, we love you but understand! I wish I had a magic wand for us all. I honestly do. Sending love and strength and gentle hugs. Much love ~M~
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Gracie, I am so sorry that you are all alone in this struggle. You know that we are all here to support you, but I realize that it is not the same as having someone right there beside you to pick you up, support you, comfort you, cry with you, laugh with you, and sometimes just hold you. I truly wish I could knock on your door right now and give you a big hug. Everyone needs that. I would like you to take a deep breath and think of where things stand and what your options are. I know that the thought of progression is frightening, overwhelming, and depressing, but this is the way I see your current situation.
1. You do not yet have confirmation of progression. Tumor markers can be useless for some people. Low TMs do not always signify disease regression, and high TMs do not always mean progression. I know that five weeks is a long time to wait, but until you have scan results, do not assume that there is progression.
2. If you do have progression, you do not have to agree with the treatment plan that your Onc recommends. If he wants you to begin IV chemo and you don't want that, tell him that. You have the right to say no. If you are currently taking Femera and Ibrance, ask about Faslodex alone or about Xeloda. Those are both medications that work very well for some people. Although Xeloda is chemo, it is taken in pill form, so no IV. The main SE is Hand and Foot syndrome, and many people get relief with a lower dose.
3. If your MO refuses to try anything but IV chemo, ask why. Knowledge is valuable. Next try a second opinion. If there is no reputable Onc nearby, contact one of the big cancer centers such as Dana Farber. They will sometimes give a second opinion even if you don't go there in person if you send them your records and scans. It doesn't hurt to give them a call. This is an important step that many people to do not take advantage of. Even if someone likes their MO's recommendation, it is wise to listen to another's point of view.
4. You are a beautiful soul, and you deserve to be with other people and not feel so alone. Can you join a support group or a church group or volunteer somewhere just to make some new contacts so you don't feel so alone? The schools here always welcome volunteers. Some towns have women's groups that get together for lunch. What about a garden club? Does your local library have a book club? Do you like to sing? Is there a local singing group or choir that you might enjoy? I have read of some cancer groups that find a support person with whom you can talk on the phone. They pair people up even when they don't live near each other. Maybe you can call your nearest breast cancer support organization to see if something like that exists. If not, many local hospitals have support groups and services available for cancer patients. Do you want to call one of us?
I wish I could help you. Please know that we love you and support you.
Hugs and prayers from, Lynne
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Gracie have you had genomic testing done? They might need to do another BX of mets. I assume you had one done with DX of bone mets two years ago? They might be able to use that sample. Just a thought, it might provide some useful information for your next TX.
Emotionally, I'm in a similar boat. I'm alone, too. I'm also worried about progression on next scan. No, not because of tumor markers, they have never been an indicator and my doc does not do them. Just a feeling based on a few facts. I try not to go there in my head, but my brain does not always do what I tell it. 😱 Anxiety should be my middle name sometimes.
I'm having some trust issues with my MO. That's probably because I'm a a control freak. We all have our unique issues to deal with. So, I have no solutions to offer. But, I do identify with having to wait for scan......I seriously hate the waiting part. My brain goes in all directions searching every possible outcome and what might be next after that. Grrr it's hard to be me some days.💞
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Gracie have you had genomic testing done? They might need to do another BX of mets. I assume you had one done with DX of bone mets two years ago? They might be able to use that sample. Just a thought, it might provide some useful information for your next TX.
Emotionally, I'm in a similar boat. I'm alone, too. I'm also worried about progression on next scan. No, not because of tumor markers, they have never been an indicator and my doc does not do them. Just a feeling based on a few facts. I try not to go there in my head, but my brain does not always do what I tell it. 😱 Anxiety should be my middle name sometimes.
I'm having some trust issues with my MO. That's probably because I'm a a control freak. We all have our unique issues to deal with. So, I have no solutions to offer. But, I do identify with having to wait for scan......I seriously hate the waiting part. My brain goes in all directions searching every possible outcome and what might be next after that. Grrr it's hard to be me some days.💞
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I think we are all similarly going through the same thing and emotions at the Same Time. I am certainly going it need somone to lean on for sure. Even family helps tremendously, but they don't have MBC they don't get it..luckily we do!! Yes we do.
Bigbhome love you lovely lady 🌷❣️
Runor~ thank you for being so very special. 🌹💜
All you ladies , Grannax. I've got scans coming soon. Also. I am a mess. The only thing that's helps me is sleep!! Much love ~M~
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Oh Gracie, please try to continue. Take 50s girls,advice. She is so wonderful at putting the words together, she makes me feel better. I met a lady a few weeks ago, who has had some serious medical issues. When I asked her how,she was, she said I'm fine. She asked me also, and I said I'm doing fine. She looked at me and took my hand and said NEVER GIVE UP!! Please Gracie and Grannax never give up. Xxx
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Grannax, Sometime I wish that our MOs would keep plans for scans to themselves until the last moment. It would be a shock, but think about it. You go for your appointment, and as you are leaving your MO says, "Oh, by the way you have an appointment for scans first thing tomorrow morning." Maybe you wouldn't sleep that night. Maybe you would be filled ithe anxiety, but it would just be for one night! I realize that such a thing could never happen. We might not be available on short notice. The MO's office would have to schedule at appropriate time. Slot would have to be free. We would eventually recognize that there's a pattern to the schedule, etc, but I can dream. It seems to me that at times each of us here thinks that every change we feel, every little ache and pain we experience, and every odd result we see on blood tests are symptoms of progression. Unfortunately, sometimes it is progression, but it is impossible for us to make that determination on our own, so we assume the worst. I do trust my MO, but I still have control issues. I find myself doing excessive amounts of research on what I feel will be my next treatment option. When my MO starts talking about it, I ask all sorts of questions about potential SEs and length of time it is likely to work. After we finish our conversation, he often laughs and asks me if he has forgotten anything or if he got it right. Luckily we do get along. I think it's perfectly okay for you to question your MO. You have a right to get explanations about everything pertaining to your treatment and your disease. You are in charge. I wish I could help you feel better. We each have to deal with things in our own way. I hope your trip will help you forget about MBC for a while. I hope it's a vacation from MBC.
I truly hate this disease and what it does to people. I wish that no one here would ever have progression. I wish I could declare the next six months a progression-free period so that for those few months we wouldn't have to worry about ourselves or each other.
Hugs and prayers from, Lynne
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Runor, Thank you for that.
Gracie and Grannax, You two are some of my favorite that I have met here. I completely understand that feeling of being all alone and wondering why you should keep fighting. I have had those same thoughts a few times. Yes, I have my Dh, who I love, but sometimes, even with him I feel terribly alone. Probably the nature of this disease. Anyway Gracie, my Mo understands me very well, he knows that if he tries to push me into something that I will fight against it. After 5 months on Ibrance 100mg, I told him that I was done with it and wanted off. I had no qol and had already, years ago, decided I was not doing chemo again. He acknowledged that he heard my thoughts and he would really like it if I would at least consider a dose reduction instead. He then proceeded to explain to me in excruciating detail how am I death would come about given where I was at at that particular time. It was a very ugly and painful description and a very ugly and painful way to die. We'll of course that didn't sound good, so I agreed to try the dose reduction knowing that if it was not better I would be quitting anyway. I don't want to go into the detail with you that he did with me because honestly it takes me to a very dark place. What I would like you to understand is that your life has meaning you have meaning to all of us here you have other people who rely on you who count on you who need you and that says to me that you are not alone. I understand it becomes more and more difficult as time goes on, because it does. But I also agree with Lynn 50s suggestions about finding something to dive into that will get you out of yourself. I honestly think we all need that, otherwise our only focus is ourselves and really how boring is that. I love you Gracie and will respect whatever choice you make no matter what, I'm just trying to give you a different perspective to think about.
Grannax, Can I get back to you tomorrow? My brain is fried right now!
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It's very strange how we experience every single emotion that there could possibly feel. Cancer patients do. I mean it's insaine. I feel a little anxious about this thing with my Mother and my step father because it will for sure increase the time I will be needed down there. She's going to need shopping. I don't mind taking her at all. I just want to feel Better to be able to take as good Care of her as I can... at the end of the day, I don’t want her in some shot hole. It has to be nice..I really am feeling positive about the place! I really am hoping she can get into the building. It would really be a perfect location for her. I'm hoping it will be one thing that goes easily. Everyone get a good nice sleep. Thinking of you all! ~Much Love ~M~
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The entrance to the building!! Big trees. Wide sidewalks. And a really nice resident feel to it.0 -
The side of the Building with a gazebo....look at those trees and that blue sky... the senior Home is in the back of the town in a quiet area!
The side of the building... the beautiful trees and area to walk aroun, freshly painted building, spring has sprung0 -
The back of the building is lined with benches every so many feet for the seniors to sit on, and yes Grannax, they have a bus system that runs into town to grocery shop. So its a beautiful area, so hopeful for her. She could be happy here! With me ten minutes away along with her grandchildren that she hasn't seen since they have been one and just born. So that's a long time huh? I am trying to help them as much as I can. Wish me luck I am doing whatever I can!! ~M~0 -
This beautiful sign greets you across the train tracks and all of the restored signs are early American andwood and look really great! She loves the markets and fresh flowers and my step father is Jewish so he loves kosher, so I need to find shop so he can get his goodies. I know the local market should Have them! Ok I am tired. Took my Medicine. Hello to you special ladies ! Minnie,The Lynne's,MJH,Bigbhome,Runor,Magda,Holmes,Robin,keetmom,Grannax,divine,Blueshine,Mae🌷,Chelle my angel, Gracie, my sweetheart I am here waiting. We are both down. Hold my hand, we will Make it together.... I truly care for everyone. I hope I didn't miss someone, if I did. You know I'll be back ! Shout out to butterflies and GP...sleep well! Much love ~M~
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Micmel, The building looks lovely. I hope your mother likes it and is able to move there. Maybe when she is there she will be so busy with activities, she won't put demands on you.
Hugs and prayers from, Lynne
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Thanks for the sweet encouragement from all of you.
Let me reassure you all, I am not about to give up. I've been doing this for over 25 years, just sharing some reality with friends who really know. There's no one else who understands the way all of you do.
I have so much to live for. My kids and their spouses and my granddaughter and grandson. I have two really close friends who have proven they will pick me up when I get in a bind. These people would all be heartbroken if i didn't continue to fight.
And my trip to Hawaii, five days and counting. I'm counting on that beautiful place to give me some R and R. Mostly it will be my grandchildren who will lift me up. It's impossible to be sad around them. I want to savor every moment with them. I'll have fun memories to share with you when I get back.
Aloha friends 💞
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Gracie, I’m sorry you find yourself in this state of emotions, I hope it is only temporary and that you discover or get back to things you enjoy, however big or small.
Hello and goodnight to all, busy few days ahead as I try to get so much work and training done before I go on vacation. Big hugs!
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Dear Gracie, sorry for going up and down with emotions! About " throwing in the towel " we maybe all keep it somewhere deep inside us. We cannot control cancer, but the last word could be our. But until this time enjoy the life , as much as you can!
MicMel, you chose a very good place for your mom. Don't worry, go with the flow. Your mom will understand your limits and only the fact that she is close to you will give her feeling of security. Try to think about how beautiful you will be in your dress for the wedding. I cannot wait to see pictures! Because I was behind with the reading I would like to add a comment to your post for your doughter. I agree with your suspicion why she changed. Jehova witnesses could influence her thinking. I know them very well in one point of my life. They tell you how to think, what is wrong and right, basically they have to fit in the frame and lose their unicness , their freedom. The relatives of her future husbent are trying to get her on their side, so she could convince her husband to go back to the religion. This is so wrong and I hope she'll be smart enough not to allow this.
I'll wright later again, because I have to take my grandson to a doctor.
Hugs and love to all. Elena
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Gracie-Big hugs! I'm so sorry you are feeling like you want to give up. I believe we all feel that way some days. I'm sure eventually I will have had enough, but after 6 years (and 6 different treatments), I'm still fighting. We all have someone who will miss us if we leave, and I fight for them. My grandsons (7 and 5) just had their first loss this morning, one of their dogs. He was 10, and had been sick. They are devastated. The older one cried for hours. I can't imagine how it will be when I go. So I keep taking the treatments with the awful side effects for them. I hope you can find the strength too! Don't forget, you always have us!
Micmel-The senior place looks lovely. It will be good to have your Mom closer by. You help out if you can, if you are not up to it, stay put. Someone else will be there.
Sun is shining and it's 70 today. Even though it's my hell week, I'm going to go outside and sit, without anything on this bald head (help even off the face tan!).
Have a nice day everyone! Hugs!
Lynne
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the religion thing I have to say is bothering me. I don't know how to prevent it, without insulting her and making her turn away from me. All of a sudden these people are the best thing in the world... but last year at this time she hated them. We took him In and I am getting the short end of things. It breaks my heart in pieces. I don't know what to do ! This combined with the Senior Home issues and my mother and step father. Sometimes , I just want to jump in a hole. But the reason I don't. Is a beautiful blue eyed man, with gorgeous dirty brown hair , who has captured my soul, my heart,my mind and who has shown me in this life, what a real man is. What a real man does, and how a loyal real man behaves in the reality of my sickness and the tragedy that has already occurred with diagnosis! I know in my heart and mind, if it wasn't for him, there would have not been any surgeries or any heavy Chemotherapy treatments for me! I would have just taken nothing and just gone on hospice when needed and palliative Care before then to manage the pain. I love my kids for sure, but they would be ok, they don't really need me as much as a small toddler sitting in. A high chair with chubby fists. Thank goodness that isn't the case. If it is the case for some of you out there. I am deeply sorry and wounded to the soul. Scanning time makes people freak out. (Maybe not Mae or 50's) but I tend to freak out ! One day at a time! Much love ~M~
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Sorry you're having such a hard time. My approach to scans is simple, I'm uneasy at times about the unknown but when I have facts, I can have a plan and I'm a planner. Even if it's bad news, I am so much more confident when I know what's what. I also love my annual evaluation at work, it's like my birthday, lol! (Last year I walked and said “so, basically just tell me I'm awesome and you're giving me a raise" and that's how it went 🙂)
My bag is packed and I'm super excited!
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Have a blast Mae!! But then again. I know you always do! Just post pics! I wish we could all be in one place together.... please travel safely and enjoy your pretty darn cool outfit!
I got to see my Grand puppers today and I am blown away he is still growing. He's still not even a year old. Wow !
I can't believe this is Chief!! My baby doll ! Have a good night! much love ~M~0 -
Good evening ladies,
Minnie enjoy Edinburg it sounds lovely and I do enjoy traveling. Thanks for encouraging us all about finding pleasure in life so that we can turn it into QOL - quality of life.
Runor I love your advice and encouragement for Micmel. The sun will find you. It certainly will. Sometimes traveling without my husband gives me time to get my blues out and focus on those rays coming through the fog.
Magda i hope your family loses your phone number and address. you looked so happy ad peaceful with your son. I hope that peace finds its' way back to you soon.
Keetmom great job gaining weight. That is a nice amount of weight to gain and you need it to fight. Prayers for your treatment outcomes to be great this time.
Lynnwood 1960 thanks for the reminder of our justifiable feelings. Sometimes all we need is that one word, one thing to get us through and knowing that we're here for each other is sometimes the thing.
Grannax 2 enjoy Hawaii and your Ibrance off time. Love the luggage tags.
50's Lynn I've never been to Kentucky or worn a hat like that one you donned fancy lady. That hat brings out the sultry cool diva in you!!!!
Mae you're a mess with the roach stickers. I hate roaches especially the monster New Orleans type. We have palmetto bugs in FL and they are creepy to me but especially if they get inside.
Lynne NH happy you got sleep. I had to look up dexamethasone and realize that its' a steroid. I also didn't know that fart machines are a thing.
Gracie M- so sorry about the Ibrance not working and the loss of treatment time. I'd be ranting too.
Big B you are a diplomat. Make sure you choose a beautiful strong actress to play your role in "As the horses and hay turns so blows the path of relatives". Quality of life is so important. I need to move, visit family friends travel, be in nature. I don't want my famiuly to be stuck with me miserable and bedridden. Individual decisions need deep thought.
Micmel I hope you get your scan results and that they are steady as she goes NED. I'm happy that your DH was home with you for a bit.
The graduation was wonderful. I went to one ceremony and a large family lunch. I'm ecstatic for my grandson and all the promise that he holds. I watched him step into manhood with some tools that will help him keep his integrity and zeal for learning. I was super duper sad to leave. He was offered a job with an apartment during the summer. He was also offered a teaching job but will continue to interview and try to get a job offer which includes continuing his education. I missed my plane on the way home and ended up getting home at midnight. I've been sleepy ever since.
Good night all,
Tanya
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Hi to all. Will try to post more tomorrow.
Gracie, worried for you -only you can know what is right for you, What an exhausting journey we are all on. I guess just letting go sometimes might bring more clarity. Holding you in the light.
Love, MJH
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Tanya, you have a wanderful, handsome grandson. I can imagine how proud you are. We love our families and this love gives us strength to continue. I wish him luck in his life.
Mae , have the best trip ever! We want pictures!
MicMel, don't worry about your doughter. Soon or later she will be back to you. Jehova witnesses are not bad people,just strang and very different. I have tests next week and of course I am scared,but what can I do......You too, so I hope we are going to share good news
Prayers for good test results to everyone! Love
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Mae- you are hilarious!! I can't imagine one of my teachers approaching me with that umph. I would have to just give her the raise.LOL I am also a planner which is why December through February are just a blur. I didn't have the plan until the end of February.
gracie- I understand where you are coming from and until I live your life I can't give much advice. I'm the type of person who lives to prove people wrong and I think that's what keeps me going. All of the people who say I'm sorry; it's like they have me 6 feet under already. And I picture cancer saying I'm going to win all the while I'm saying "not while I have fight left in me!" I know this sounds weird but that's where I find the strength to fight. You need to find your strength. No matter what you choose we will always be here for you.
Tanya welcome back in glad everything went well.
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