My Husband, My Life, My Love, My Family, My Cancer
Comments
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Gracie~💕Hello my friend! My scanxiety radar is on high. I know we have many scans coming up on this thread. Mae and I same day... I believe Lynne(man) is scanning the following week. It's enough to drive us all mad.
We have Chelle this week.--sending her thoughts and strength!! NED to stay! Then we have Mae and I and Lynne(Man) scanning next week. And now Gracie the following week! I honestly don't know how we all do it. Much love ladies. Will have you all on my mind. Chelle~. Right there with you! ~M~
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Hi Micmel 💝 I hate that all of us are so nervous!!! You are right, this sucks!! I’m praying for everyone. Hoping for good things!
Love y’all!!!!
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I sent my saliva in too. I just got another email that they want blood now. I can be drawn at a lab, the dr's etc. They will be sending me a kit for that now. I did sign electronically. It may help find a cure (there is always hope). Even if it is not for us, for our children and the future. It's MIT and Harvard that are doing the study. I do go to Dana Farber (in Boston) whenever I change treatments, to get a second opinion for Dr Jennifer Ligibel. She used to come to NH once a month. Now it's another dr. I decided we'd drive the hour and half to Boston to see her. Hopefully, the scans are ok on Monday, and I won't have to worry about that.
Lynne-beautiful pictures!
Sleep well all!
Lynne
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Lynne(Man)~I am going to do it as well. I agree helping our kids and their kids and their kids. Just wish that having to deal with all this scanning crap didn't have to happen . It really can grab a hold of someone and not let go. I don't think that there are any words to really describe the real feeling you get going through this. It truly is a form of torture. Thanks for the input with the MBC project! Much love
~M~
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.........nothing like that sure fire way to shut up a dinner table for sure!!! Hope everyone sleeps welll. Have a blast Lynne!! More pics! More pics! Much love ~M~0 -
I agree, M! I think the mental torture is sometimes worse than the physical!
My family and friends hate it when I talk about my cancer. Drives me crazy! I've been stage 4 for 5 1/2 years now. I've accepted it. They don't like it when I say, "if I'm around". They still think I will "beat" this. I try to explain there is no cure, but they are living in a fantasy world. They think there is a cure out there somewhere. I hope they are correct, but I'm being realistic. The only place I can talk about this cancer crap is on these boards. I've been doing that for 12 years now (since I was first diagnosed stage 1). Only support I have. Yes my family supports me, but this is the only place I'm "allowed" to talk about it!
Today is voting day for Mayor, alderman, school board, etc. It's sunny but cold (40 right now). I'll head out with my almost 80 yr old Mom to do my civic duty.
Hope today is a good day for everyone!
Lynne
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Good morning All,
Mae you look amazing and official with your hard hat. I love watching animals in natural habitats. When you retire I hope you can enjoy your free time as much as possible. Retirement is something we plan for but not this rotten cancer to go with it.
Micmel your description of "scan" deserves an "A" in English! I had asked my Onc if the 125mg Ibrance had a cumulative effect, as in each cycle we feel worse and he said no. Do you agree? I kind of got off the optimum cycle last month due to infection I had to take the shots faslodex on Wednesday but not the Ibrance until Sunday after I had completely finished my penicillin. So, now I completed my pills Saturday and will resume them this Wednesday. In my mind this is going to suck in advance.
50's enjoy enjoy enjoy. It looks amazing. Lot's of exploring for you guys to do.
My cousin arrived from Hawaii and we've been working on ancestry stuff. Digging through pictures and making up stories. Trying to reach out to older relatives to get more names and stories. I've been pushing myself out of my comfort zone and not sleeping as much. We went for acupuncture treatment and that always makes me feel energized etc. It reduces my hot flashes too for a night or so. God willing when she (my cousin) leaves to go visit her niece in Ft. Lauderdale I'm going with her. It will be the first time I get to meet this side of my family. Too many miles and not enough time.
I agree Micmel about the staying on hormones after the 5 year mark. I remember when my Onc took me off of it. I was happy actually bc SE are real. But that happiness came with the price I'm paying now. Also after the 5 years we should have scans at least once a year. Who knows when the cancer came back in my body? I was having Mammos every 6 months and blood work. That didn't see the cancer in my ovary and bones. For the future follow up care needs to include everywhere cancer usually goes not just breasts.
Mae and Micmel I will be with you on the 14th for the gut wrenching, mind blowing, anxiety igniting, emotion controlling, terrifiingly paralyzing. Energy sucking, life altering,body poisoning,muscle weakening , ugly scarring and disfiguring, fear with every breath. Effing scan and MRI. Praying that these tests have magnificent, encouraging, uplifting, miraculous cancer busting destroying results.
Much love,
Tanya_Djamila
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Lynne(Man)~ i am always so tired I have no energy at all. I think it's sweet that you are looking into your heritage and your history. My family is the same way with if I'll be here comments. It is the truth through, it's not fair that we have to hide our fear and what we go through, because half the family lives in denial. My kids don't want to hear about it, my DH knows, he knows that I am terrified , he tells me the other side of not having the cancer can be worse. Because if something happens, he doesn't want to live without me. It's just sad any way you form it. So unfair also. My place to speak of my cancer is here with my sisters. Relatives or not. I care deeply and love you all. Thank you for helping me have a place where I can feel like it's ok to be scared. This is the only place that allows the fear to be spoken the way it really is. Much love. And will be with you Lynne also on the 13th! ~M~
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Tanya~I am convinced that ibrance indeed does have an accumulative effect, without a doubt. Each month I have less energy and less ability not to at least sleep 12 hours. I feel like a slug. I can barely find energy to find something for me to even eat. I don't like getting out of bed, because I am exhausted every second. I never really feel restored even after 12 hours of sleeping. It's ridiculous!!! I am finishing my 12 month of ibrance and it has been a long year, I havent scanned in six months! So my Fear is heightened beyond measure. Everything about this is wrong. For people to have to feel this way is just a form of torture to me. It's not anything, if I were a god , would construct or allow cancer to exsist in such a beautiful world. But then on the other hand the world is full of awful things. I just don't get it. Hope you're doing well Tanya , hope you're not too tired. One day at a time i said before, but now it's like second to second! Big hugs much love ~M~
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I decided to reach out to my oncologist nurse. Although, last time I was in the office, she told me she was leaving the hospital and doing another job. I was heartbroken and I mean completely devastated. She seemed to be the only person that could ever talk me out of my hole when scan time approaches. When I was checking out she came to me and said "here is my phone number, I don't give it to everyone, but you're special to me 😭😢 and if you ever need me, call me or text me." She answered me within 9 minutes and Is calling me at 4:30pm. I am so thankful she answered me. I am hoping against hope, she helps talk me down. This scanxiety is no joke. How does everyone get through it.? Give me one helpful tool. How do you guys cope? How do you get up and do what needs to be done? I just feel so out of touch with who I once was. I am constantly searching for that feeling/person. To where when I awake I don't think that I am not stage1, not stage2, not stage3 even... but already stage four and there is no 5. The only stage that follows is the end stage. How does someone deal or be talked down from that.?? Much love ~M~
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I am starting to think I am losing my mind and ability to keep days an my appointments straight. I missed my dogs vet appointment, I thought it was the following week. I thought my blood work was the 15 and my scans the 14. I was wrong, my blood work and XGeva are Friday and then the scan is Monday morning at 9:00 am. Wow! I don't even have a week. I am going to find a way to get these results from my primary care doctor. There is no way I am scanning on the 13 and have to wait to see see onc until the 24??? That's just too long for my liking. Why is this so shitty? Then I looked at the calendar today. I get one more pay check before Christmas! Lol that is almost laughable. what?? Presents for who? It's almost like it's going to be Christmas lite. Like bud lite. Almost Christmas but not a full blown Christmas. I can't do it. Scanning near the holidays just makes it more stressful, because people want to visit, and you get to sit and pretend and smile that you're so ok and that it doesn't bother you one bit, that you don't have any idea how many more holidays you'll even be around for. The smell of that cooking makes me wanna hurl. Id much rather not deal with it at all. At least my hair is really growing in now! I can't believe how long it's gotten. That also scares me! I am not going to change chemos again and loose my hair again. Just can't.......~Much Iove. ~M~
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Mich- Ibrance was tough on me fatigue wise too...I have SO much more energy on IV chemo...which is weird to think..yes I have NO hair (understand you not wanting to loose it again) actually all the Oral stuff was worse then any IV stuff Ive done.
HATE it dark before 5, hiding under a heated blanket
I am doing a lot of my Christmas shopping on Amazon...I LOVE Amazon!0 -
Keetmom~ I so agree that ibrance is the fatigue culprit. It drains me like someone squeezing a sponge. It's pouring rain here and my dogs hate getting their precious prince paws wet so..... I am on a mission not to have my new carpets ruined with a stain I'd prefer not to discuss. Do any of you guys have dogs that just won't go outside to the bathroom when it's wet ? Ugh! Yeah the early dark thing does suck. I thought we were getting a storm and it was just getting dark. I hate Christmas. Especially with. No energy. I used to love it. I will also be using amazon. Lol. It is a great thing. Lol. Much love ~M~
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Micmel, Most radiology departments will provide you with the report (disc too if you're interested) from your scans within two days after the date of the scans. You have a legal right to those results. I am only mentioning this in case you are unable to get the results from your PCP. As far as the dates of your scans are concerned, think of it this way. Now you will have less time to worry about them since they are earlier than you thought. What types of scans are you getting? PET? CT? MRI? Bone scan?
I am a big fan of Amazon. I have done the majority of my Christmas shopping online during the past couple of years. I love getting packages and opening them. I try to wrap the gifts as I receive them so I don't have to do them all at once. I already have all the wrapping paper.
Hugs and prayers from, Lynne
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Lynne~(50s) I talked to my oncologist office and they are calling me right away with the blood work from Friday on Monday. And then scan Monday, she said she would call immediately about the results. Which nothing worse than that phone ringing with results. What a haunting feeling! Ugh! I also use amazon for mainly everything and. Anything. I hate shopping!! I am always too tired and thereis just too many people in my way! I like the idea of wrapping them as you get them. Makes sense to me. How is your trip going ? I am thinking of you regularly. Hoping you're enjoying every second that comes your way. So happy for you and DH. Hope the weather cooperates with you the entire trip! Much love ~M~ Btw, it's just a Ct scan. You know the one where you have to drink that un flavored hand lotion! Nasty nasty
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I just realized that 5 years ago tomorrow was my mastectomy, cant believe it has been that long.
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Keetmom~that is amazing. Time is so fleeting. I am sorry that you should ever have to remember such a date. But here you are, fighting this beast alongside your friends everyday.Five years of taking care of those beautiful girls of yours. Five years of loving that wonderful DH of yours who stands by your side. While it does suck you had that happen. I Still mourn mine being gone. I sometimes consider reconstruction! I feel If iam lucky enough to have a decent scan on Monday, I Am thinking about seeing a doctor. I do have lymphedema, on that side, so I'm afraid to awaken another beast. i am so glad you're here five years later! It will be 2 years lost for me in June. So......I've got a ways to go. If I can live that long of course. Much love to you strong woman !
~M~
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Good morning everyone! I logged in yesterday to tell you all a funny story, when the first thing I saw was about Ebru's passing(hate that word) . She was always such a ray of sunshine! It hit me very hard and I am still reeling. Thankfully, Dh was here when I read it and he pulled me into a long hug while I cried on his shoulder. He took me to lunch and we sat and talked about things. He stayed with me until he was sure I was going to be ok. I cant tell you how grateful i am for him every day! 29 1/2 years later, I love him more than ever!
I was reading Real Simple magazine the other night, and a woman wrote in that this year, they were not giving things for Christmas, they are giving experiences. We loved that idea so much, that is what we are going to do! Our 1 grandson likes horses and there is a farm not too far from them who offer an array of things for kids and adults to experience "the horse life". Our ds and dgs like to camp, so some campground passes will be purchased, along with a list of items that will help make their camping a better experience and a gift card to purchase these items. Dil with get spa gift certificates. That is as far as we have gotten in our list. All of these items are easily purchased online.
I'm glad to see everyone is doing well, except for scanxiety. To all of you having scans, I will be with you in sspirit, praying for you.
Micmel, please dont forget to talk to Mo about Ibrance reduction, I think your quality of life would improve greatly with a dose reduction, I know mine did. It took a month or two to start felling better and then it just kept getting better and better. Also, i met with Palliative dr, and we discussed and made a few changes. I could feel myself sliding into depression before we left for vacation and after we returned. there are 3 differnt types of anti-depressants. They all work differently. I am on the maximum dose of Effexor and everyone is extremely hesitant to put me on Wellbrutin given my seizure history. So we added a second type to the Effexor called Trazadone. Wow! After just a few days, I started seeing a difference! A big difference! I have been getting things done that I have wanted to do for a long time. I am out of my funk, finally! I decided, there is better living through Pharmacutecals! Also, restarting therapy.
Chelle, I understand you and your Dh are facing some very rough times right now. I wish I could help. I thought about your yard and I thought we could talk here, or on dark clouds about a long term plan that could be don in small increments. That is what we are doing. We have a big plan, but we are working in small increments as we have the time and the money. Its amazing how one little thing, can make everything look better! Because it is cooler, we are currently moving trees to better spots, with more sun. Now that we had the live oaks trimmed, and some removed, we now know where others will thrive. Even just putting together a group of plants in a pot makes you feel better. Also, you can take those inexpensive pots and paint them to make them look like the more expensive pots. A good winter project! I am praying all your tests come out clear and you remain NED. Know that I think of you every day!
Sorry for the novel, just had things to say. Hugs and prayers,
Claudia
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............I also wanted to pay tribute to beautiful Ebru, (stagefree), she was a beautiful woman and soul. I hope that her husband and son are finding comfort together. It's terrible what this disease will do. Such a shame to have loss like that, you find people and get used to seeing them around every day.So sad. May she Rest In Peace and there is no More pain where she is anymore. ~M~0 -
M-I get my scan reports and cds every time. Usually a that afternoon, or the next day. I am having my CT/Bone Scans next Monday at 8am. I worry about the results. The receptionist is the one that told me I could get them myself, so I do am I know the results before I see my oncologist (I see her next Fri), and I can ask her any questions. Of course, I'm looking up a lot of the medical terminology, but sometimes, I'm still not sure what they are trying to say. I just need to be upset at home, instead of at the office. I deal with it, then move on, and I'm ok at my appointment. After 5 1/2 years of doing these scans (12 1/2 since first diagnosed Stage 1), it doesn't get any easier if it's a bad scan. Just ready to get it done and over with next week. I was exhausted on Ibrance too. I was on it for 6 months.
I'll be thinking of all of you too, as you get your scans! Hope we all have good news.
So sorry about your friend. Hugs!
Lynne
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Claudia~I spoke to the nurse oncologist yesterday because of my scanxiety. She told me that when she opened my file to call, it said I was in remission, NED. I said to her. Why wouldn't he tell me that? She said because he doesn't want you to let up and stop doing anything that you're doing because it's working. I told her about my extremely rough fatigue and that I wanted to reduce the doseage hoping against hope that I wouldget a good scan. She asked me about my diet. A red flag went off!!!!! I know my diet sucks. I don't really ever feel hungry and I have to force down food. So I know that is a huge thing. I am also on Effexor. 70 mg a day. It does help I can tell. Also helps tremendously with heat flashes. I barely get them anymore. Thank goodness. I'm going to see a nutritionist soon. I am thinking that will have to help. I am still going to ask about the dose change. I know he won't like that. I just hope my scan is good! Much love ~M~
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today was a Grandpuppy day! Made my day and lifted my spirits. Another good part was my DD and her significant other came along on our walk around the pond. He gave him a good running. I am sure he will be tired when he gets back into the cage! He is getting so big and strong. He will be as big as a bull lol. I love him and had such fun on this beauty of a fall day! Gonna be dark soon though. Yuck! Much love ~M~
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Micmel, I too am saddened by ebru's death and honestly a bit alarmed, she seemed to be improving just a few weeks ago. Similarly, peacockgirl from the Abraxane thread was posting that chemo was working and 3 weeks later she was gone. I understand we don't really know someone's condition by their posts but it is just too fast and worrisome.
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Mae~ it definitely does scare you. I was shocked when I read the thread title. It seemed very sudden and not something like you said about her posts, she seemed up beat. I just don't know anymore about having cancer, and of course all of this right before we all have to scan. It's a dance with flames, eventually we all get burned. It does totally freak you out. There really are no words. I'm sorry Mae, that you're upset as well. She was a beautiful woman. That's for sure. It makes me scared to even think things are going well and then who the hell knows what's reallygoing on with this evil disease. I feel the same way you do Mae, it doesn't make any sense at all. Which makes it even harder to feel safe on the treatment that we are on, when things could change on a dime. Makes me sick. But I do love you guys! We have to keep fighting together. I have blood work Friday and scan Monday. Never been so frightened in my entire life. I'm going to try to hold on tight! Much love ~M~
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Lynne(Man)~I remembered that you had mentioned you would be scanning Monday as well. I will be thinking of you as well during mine. It just seems like once you know you're scanning, every ache and pain starts. I just worry like you said Lynne, it never gets easier. I also have my copies of scans, but I do have to ask for them. No matter how many times I scan, I never get over that feeling of total helplessness and get so scared!! I will be sending you strength and good thoughts. We all need good news. Much love ~M~
Miss you nan!!
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Hello everyone!
Claudia - sorry,my last post was written during a self pity party! (Which,by the way,I am a pro at). We will be getting going as soon as spring arrives! We might do some rock work this winter.... we are just chomping at the bit to get started!!
Keetmom - five years! That’s a long time to have been dealing with this B.S. But it is so awesome to have made it this long!
Time does fly by. Before we know it,all of the scanning will be done and it will be Christmas! I understand those that hate the holiday, but I love it!!! The decorating,the music,the food,the shopping,wrapping,children,love,family. It is my favorite time of year!
I have done the brain and breast MRI’s and they still haven’t found cancer! Looks like I might be having a double mx,before the end of the year. Need to start decorating!!
Tomorrow is the last few MRI’s hips and pelvic. I’m almost done!
Hang in there ladies! The scanxiety is almost over! I say that,because for me,the scanxiety is actually much worse than doing the scan!!
Love to all of you ❤️
Chelle.
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Chelle~keep it going my girl please !! I am with you so much in thought your brain might think I'm stalking you lol I talked to my onc nurse and she was so helpful. She told me file read remission. All this time I has thought it was just NEAD, but they all apparently have their terminology for everything. Hell.... had I known that I would feel a little better about going into these scans.although who the heck knows! I used to love Christmas! When everything was all decorated and done. I did everything. Myself since my kids were even born. I did it all!! Every year, I did it for my DH and my DSS plus my kids. So 15 with my DH and 8 with just me and my kids while my x was always working, we are scaling back Christmas this year. It wasn't even Halloween yet and the damn lights were up and the obnoxious car commercials start. (Like I don't think I know anyone who has ever gotten a brand new car for Christmas. ) it's just jammed down our throats. I'll maybe change my tune a little from ba hum bug to it's a miracle! If my scans work my way. I have a rotted stomach from all the worrying that goes into it! I am thinking of you today my dear. And ....everyone else we know has to scan. Mae, Lynne(Man) I am with you all. Much love~M~
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Chelle-I have only been stage 4 for 2 years, it was considered stage 0 going into surgery...ended up more then that but not one expected to have it go to Stage 4, Im sure things were lurking in those 3 years between diagnoses.
It is really cold here...no hair SUCKS! It is supposed be a low of 13 tonight...way to early for that..
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Keetmom~I wish you never had to have that happen. I remembered last year how cold it was and I had a hat and scarf to combat it. I already have my scarf out and have used it already. When I had the grand puppy yesterday, it was a high of 48 but it is nice enough when the sun isn't shining and it isn't windy. Add that wind in there and no way! I woke up at ten am. My body seems to always need sleep! I feel like a drone, and I have lost the remote! And it cannot be turned on! Ugh!! Keep that head warm darling. Hugs to the beauties, including mom! Much love ~M~
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Micmel, remission, nead, either way it sounds like you can scan with some confidence, nice going!
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