My Husband, My Life, My Love, My Family, My Cancer
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Hi ladies
It’s taken me awhile to catch up.
Parry I’m thinking of you and I know you’re in a battle but that Dr doesn’t sound like she fighting with you. Praying for you and your husband. That part of your life sounds incredible.
Divine sorry to hear the “p” word. I am on ibrance faslodex. For about 20 months. I started at 125 for the first 10 months and I was exhausted always. I requested 100 and did that for 8 months and then bc of low counts extreme fatigue breathlessness I started 75. I’m still anemic with low blood counts but it seems to be keeping me stable. I did also have radiation to my spine Mets and other bone Mets. You can check out the ibrance thread those ladies are super helpful. Also message me anytime.
Grannax I was stunned at the 12 mile drop off. Family sometimes think they have a license to mistreat you. Revoke the license.
Mjhjan happy you had a weekend getaway.
Minnie enjoy your family.
Mae you look fabulous and strong.
Take care all
Tanya
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Tanya, thanks for sharing someof your Ibrance experience. I’m on the Ibrance thread and finding it very helpful.
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Ladies~I am struggling to write this post and forgive me if it doesn't come out the exact way I wanted it to.
My heart is shattered. I have learned today that our beautiful Sheila Marie has passed away. She left us on February second at her home surrounded by her husband and beautiful daughters and her son. I was and have been so worried for months now. I was so afraid of finding this out. Some sweet sister reached out to me today because she understand my need to love my sisters, and honor them. I know she feels no more pain. But I cant help but remember those pictures of her beautiful beautiful daughters, familyand how proud she was of them all. I am sickened that this shit disease has destroyed another beautiful woman and family. I just don't understand how to organize the pain sometimes. I hope she is soaring pain free like a unicorn galloping into the fluffy clouds. My soul is pained and I am sobbing as this is being written. What a loving giving mother wife and friend. My heavy heart did not want to write this. For then I had to admit another sister has been lost. My heart bleeds with pain. I'm so deeply sorry. So sorry for her beautiful family.
Please know Sheila.... you are loved. Always.
~M~
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Micmel, so sorry. So very sorry. I agree with you, we don't understand how to organize the pain.
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nothing about this disease is easy. It’s amazing how we as humans adapt. We get kicked repeatedly in ways and we seem to get up. I guess she had fought her fight an was no longer able to get up. It is truly scary. The only good I can see is her not being in anymore pain. That’s it. She has three children and I recall one daughter just graduating college. Luckily, she was able to see That happen. She fought like hell, as we all do..
I honestly feel like I catch everything. I have been sick for three weeks now. The flu first... then sinus/ cold... now this pluerisy, which has rung my bell. I can’t shake it and I’m starting to think it’s because of the nursing home. I guess the germs just fester and fester there. Waiting to attack immune systems. Shitty cancer =shitty days for sure. Love you all sisters. And Daniel
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I am sorry to hear about SheliaMarie. She went quickly. I imagine that her son is glad that he shard that he was transgender before his mother passed. Although it was a shock to her, her son, now daughter, knows that her mother knew the truth she had hidden for what was probably a long time. This disease knows no fairness, has no pattern, and includes no goodness. It is always difficult to accept the losses we see. I wish peace and comfort to SheliaMarie’s family.
Hugs and prayers from, Lynne
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Sad to hear of SheilaMarie’s passing, I tend to assume we’re just on vacation unless the absence is too long. RIP Sheila.
Just got home from the mountain, I’ll catch up later.
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Lynnwood, I had my weekly appointment with my Oncy yesterday followed by chemo, and I couldn’t help think of you as I left the exam room. My onc’s words and attitude were in stark contrast to those of yours. At one point,my dr told me that I tend to minimalize issues (so true) and he reminded me that it was of utmost important to let him know right awayif I have any signs of neuropathy from taxol. He said that it can be permanent and affect functionality in the future. Why was that significant? It made me realize that he believes that I will be around for a while. The best part came just before we wrapped up my visit with him. He sat there looking me in the eye and broke out in a huge smile as he said ,”You are doing great.” Those four words made my day as well as my dh’s. You popped into my mind because you do not have that type of support and encouragement from your onc. I am a few months short of 4 years of my Stage IV diagnosis and am on my fifth line of treatment. You are even closer to that 4 year mark and are still on your first treatment. If I am doing great, you are doing amazing. My doctor would be singing and dancing for you in that exam room and telling you that you are remarkable. Remember that please. You are remarkable and your response is amazing!
Hugs and prayers from, Lynne
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Lynne, thank you once again for your kind words!! As I type this I am waiting for a call from my onc with my bloodwork results. I was talking about her with my husband last night. He goes with me to all of my appointments. He loves her and thinks that she is an extremely cautious doctor who will be looking at every little thing and that’s great. He doesn’t seem to understand my need to hear some positive reinforcement from her. He feels like he gives me that which he does but he is not a doctor. I’m debating weather to say anything to her, I am very blunt in general but do not want to put words in anyone’s mouth. I would rather the words come naturally. Maybe at my next appointment I should say well I’m 4 years in now, how do you think I am doing? My original onc retired and I really clicked with her, my husband feels that I haven’t given this one a chance because I liked the other one so much. Still mulling things over in my mind. We may be having a difficult conversation.
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Not sure how often I’ll use this but I thought it would be good for a laugh 😆
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Sad to hear about the passing of Sheila Marie.
She shared her joy and pain with us
Tanya
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I am so awfully sad to hear about Sheila Marie. So sad for her family.
I've been hoping she would post. Sometimes the word tragic gets overused and diluted but for the losses of our friends here, tragic is the right word. Fly free, sweet lady.
Thanks Micmel for letting us know. It was painful.
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Illimae, love it!!!
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I’m so sorry to learn of Sheila Marie’s passing! It is very sad. My deepest condolences to her family and loved ones.
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Lynnwood, I feel like you could let your oncologist know some words of support from her would be helpful to you. Consider using a little bit of charm. You might say something like, "I'm always appreciative of your knowlegeable manner and how well you explain the medical matters of this disease to me. Would you mind if I also ask you to give me some words of encouragment, because I'm the type of person who has a need to hear it." I mean, it can't hurt. Just as we are not mind readers of our spouses, and have to tell them what we need, I think it is okay to do that with the onc. And much as your husband is a really, totally good guy, you're the patient, so its about your needs and not his. Don’t defer to your husband’s opinion that the onc is doing okay by you. Advocate for yourself, you’re worth it!
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Minnie31,her daughter and granddaughter and I had coffee together this AM at the Oak Bay Marina in Victoria. So nice to be able to meet and put faces to names. Beautiful weather too.
I am on the right, Abigail is in the middle and Minnie31 is on the left. Nice eh?
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Stunnin
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omg this is why I made this thread.
Just precious. Hello ladies 🌹🌹🥰🥰💙
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Well my tumor markers are up again, from 129 to 209. Biggest jump they’ve ever had . Onc reviewed all my scans today. Says that even though my bone scan looked like there was improvement, she still thinks that I am having progression in my bones. Insurance has denied per scan twice already despite her doing a peer to peer review with their doctors. She’s going to try again. Depending on the pet scan possibly changing my treatment to Xeloda. How ironic to get a positive word now... she says oh you’ve done so well on the Ibrance, you’ve been on it longer then any patient that I know in our practice. So over all of this!!! Now the waiting game for the scan approval or denial.
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Yay Minnie and Mariane, so cool of you to meet up!
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Lynnwood~❤️❤️❤️ Inflammation gets my vote. Holding tight for you and many many more months of ibrance. You’re amazing !
Waving to Mae! Joe777~Hello dear. Muddling. 🌹
Gracie?? Love you sister. Thinking of you.
Minnie and marianelizabeth. Soo wonderful!
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Hello friends. I have been keeping up with all of you while I have been on hiatus from posting. I agree with Muddling that it is going to be hard to answer and touch on all that has been happening to everyone! But first, I want to let you all know how it fills my heart that so many of you reached out with love and comfort during my time in the “black hole." James' death rocked our family to the core. It is hard not to go to the “what if's" and the “if onlys." We are all learning to live with it in our own ways, and also, luckily, together.
Which brings me to sadness to hear of family issues for some of you wonderful ladies, since I am the luckiest BC patient on earth with my immediate family support, and I do not take it for granted. Although my daughter lives 2 hours away, my husband and son, who is a writer and has a flexible schedule, attend every appointment with me. And my son has not missed a chemo since my first go round in 2013 (he loves the cafeteria food at the hospital!). I am beyond shock that any child would berate and disrespect their parent, especially one going through what we are. I hope like crazy that all of these issues can be aired out and resolved. We are on this road and hopefully we have a lot of time left, but the reality is that maybe we don't. I would not wish for any of our children to have regrets about their actions after we are gone. Imagine how hard that would be to live with.
In my cancer life, my doc seems like she is on a fact finding mission. She has rerun bloodwork, is doing the Guardant thing again, and sent me for a CT scan yesterday, although I had a PET on 2/4. That showed that one liver tumor had progressed, but there was less uptake in another, and all others remained the same. I think it is sticking in her craw that there was any progression. Also, my tumor markers are the highest they've ever been, and the last bloodwork showed my Alk Phos had gone up 100 points, in 10 days. I did ask her how I am doing overall, and she said that it may be time to bring in some big chemo guns. I meet with her tomorrow for the CT results and am bracing for a TX change yet again. This would be my fifth line of treatment in 17 months. So it goes.
Parry, not sure of the protocol for changing docs in the same office, but I would not hesitate to recommend my doctor. She is a straight shooter and yet a real human being. I never leave her office without a hug, and she is interested in my whole life, not just the medical side of things.
Love to you all, and let's find a little bit of joy today.
Donna
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Lovely to meet with Marianelizabeth this morning in Oak Bay, Victoria BC. Nice chat and coffee.0 -
I've heard or read that sometimes tumor markers elevate when tumor cells are dying off. That may be a myth
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Minnie, great picture of you and Marianelizabeth! I think it’s wonderful when we get to meet each other in person!! I met a friend from one of the other threads and when we met we really clicked. She moved but we still keep in touch by phone. It’s nice to talk in person with someone who gets it.0
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Parry, it makes me sad to hear about your challenges with your MO. I do not think you have too much cancer to treat. I have been back from the dark side twice now and you just need one medication that will work for you. Our bodies can turn things around in remarkable ways beyond imagination. (Other than the rogue cancer cells,) our bodies are programmed to return to a healthy, homeostatic state and to heal. That is a constant. Nothing hurts me more than having medical staff that any of us feels may have written us off. They are in effect devaluing our lives. Many have seen that around here and it is just not right. You and each of us should really be viewed as a human being first and foremost and not just a cancer patient. I do what I can to force my medical staff to view me as a relatable human and not just a statistic, beyond help at this point. It shouldn't be that way.
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Lynwood, I hope you get approval for that PET scan. It seems odd that your MO thinks that you have progression if the recent scan does not seem to support that. What are you currently taking with Ibrance? If you do have progression, would faslodex be a possibility before Xeloda or have you already had that? I know this is a difficult time for you, and I am sorry to ask so many questions. I am sure that you and your onc will make the right decisions based on the facts. I just hope that your insurance company cooperates.
Minnie and MarianElizabeth, Thank you for posting the pictures. It is wonderful that you two were able to meet for coffee and conversation. How nice that Minnie was "in the neighborhood" half way around the world from her home.
Hugs and prayers from, Lynne
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Oh, how I wish our lives would go smoothly while we are are fighting to live.
My saga continues. Tomorrow I will meet with my counselor, DD and SIL. I'm dreading it like the plague. My DD went off on me again two days ago. One day she is compassionate the next raging at me. This time she said. Mom, I've talked to several of your friends who think you have Manic depressive disorder. WHAT?!? Later after she brought up several other bizarre things she had on her list for tomorrow, I called my friends. Nope, they never told her that. One friend came to my rescue and called my DD to set her straight. I am so grateful for her. She and my other BFF are the only witnesses I have to come to my defense. It turns out that both my BFF were worried about me while I was on afinitor, rightfully so. It truly messed up my brain, body and soul. Also, during that time I was taking two Tramadol in the morning and two at for the severe pain I had on AA. I realized it was messing with my brain. It made me talk super fast, hyper and slurring my words. About three weeks ago I put two and two together and stopped tramadol except for one pill in the morning.
So, when DD was talking to BFF she said I have a list of moms symptoms to tell the counselor. Symptoms?!?! OK, now I get it. All along I was thinking grievances would be discussed, now I think she's going to try to convince my counselor that I am MDD. That I had a psychotic break the day we got into a fight in the car. OMG
The surprises are NEVER ending. My BFF also told her she only saw the rapid speech and other things during the time I was on Afinitor, not a year ago as my daughter claims. I was only on it five horrible weeks. She told her that the compassionate phone calls vs the raging phone calls were making me so upset I couldn't sleep, eat or focus and she needed to STOP. I hope she does, but I don't mind buying size 6 spring clothes! LOL
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Lynne, I take Letrazole with the Ibrance. I’ve never had Faslodex. In fact that’s one of my questions to my onc if I have to change treatment, why Xeloda next? Obviously Ibrance has done its job for quite a while and I hesitate to go off of it. She said that while my bone scan looks significantly improved, I can still be having progression in the bones that still show cancer on the scans. Says that if my cancer is active, she needs to see where and how active. Lots of questions and no answers yet. Grannax, wow! So now your daughter can diagnose mental illness??? It would seem to me that if your counselor who you see regularly thought you had bipolar disorder she would say something to you.Medication can do crazy things to our minds. My husband took Chantex to help him quit smoking and he turned into an angry aggressive argumentative person almost overnight. Thank goodness I convinced him to call the doctor and it cleared when he stopped talking it. I take Tramadol with no problems but know people that cannot take it for the reasons you listed. Keep us posted, we care. I’m closing, thanks to all of you who so kindly support me and give me gentle advice when I’m feeling down and frustrated. It means more then you will ever know. Love to all.0
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Minnie! Marian! Thank you so much for the photos. It's wonderful you got to meet in person.
Lynnwood, sorry your treatment is up in the air. Hoping the tests are approved and you known what to do next. When I asked, my MO told me that he might do faslodex next, or xeloda. I'll push for keeping Ibrance, adding faslodex, and dropping letrozole if I can. Let's try it, right? Xeloda will still be there. For the first time ever my tm went up a little bit last month. Just a few points but you know the unease it has caused me. I'm just a year on I/L and I want the full 24-whatever months 😉. (I know that's not how statistics really work.)
Grannax, good thoughts to you with the family issues.
To everyone here, hoping for everything good coming your way.
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