My Husband, My Life, My Love, My Family, My Cancer
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here's......Monday! It's 11:22 and I'm just waking up. I feel like a zombie, it's so annoying. I am happy the medicine and doseage are working, don't get me wrong. I just hate this constant sick mind and fog that I feel will never go away ,the constant sludge, it feels like we have to navigate through this thick syrup that we can barely walk through. That sludge becomes our daily lives. I don't really ever think clearly with all the medicine we take every single day! I counted my pills. I take over 18 pills everyday. No wonder I feel foggy every single day. I hope everyone is ok, Or just away. Living life! Love you all ! ~M~
Ok Nan it's been long enough. I'm officially concerned!
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18 pills, damn!
I'm concerned about nan too, according to her profile, she hasn't logged in to bco since 10/30.
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Hi all! Back from several days in NC with son and grandsons! We had so much fun, and made so many memories! Dil and I, made lemon meringue pie Wednesday. It was ok, and took forever to whisk lemon filling and to beat meringue. We decided we are doing something wrong with the meringue, so I am going to experiment at home. I have my mothers recipe for the filling and it is wonderful! I told her I would bring that at Christmas. Thanksgiving was delicious! We all ate way to much, but we had such a great day! I was so happy to see all of you had a wonderful Thanksgiving too!
Chelle, I was so sorry to hear your news about your Dh and having to move. So glad you are NED now and I would choose to think of this as a grand adventure! So many choices on where to move to! Texas is a big state and has several different climates. Dallas and surrounding areas get, what I call, the worst of the worst, weather wise. Brutally hot in summer, in the hundreds, and visciously cold in the winter. Yeck! We have never been to the hill country other than driving through. It has a stark kind of beauty. Lots of Mesquite trees and we have read that it is an affordable area. We stipped in Waco about a year and a half ago and we liked what we saw, nice college town. There are surrounding small towns with more property. MD Anderson is in Houston, But sorry Mae, there is not enough money in the world to get me to live there again! Sooo hot and muggy in summer, like here. But i hated living there some 40 years ago and have looked recently and agreed with how I felt before. I am not familiar with the Crpus Christie area. Also, I was wondering if employment oppertunities were going to be important. If you wanted to come father east, there are still some areas in NE Florida that are very affordable. Yes like Houston, we are soooo hot and muggy in the summer, butthe rest of the year is gorgeous! Yes, we get hurricanes, but not as many as the gulf side. But I love the fall, winter and spring here and this area is growing and there are jobs aplenty! We have 5 acres with a hous and barn and we got a great deal! Not trying to talk you into Florida, just telling you about our neck in the woods. We dont have state income tax either. But I dont think Texas does either. The people in Texas and in Florida are great! You cant go wrong in either state! I completely understand about how expensive it is to live in Colorado! We wanted to move there years ago and just found it to be ridiculously expensive. Also, in NEFlorida, you have Mayo, which is where I go. Anyway, it's a big country with so many choices, I would look at is as a grand adventure and a new chapter in your book!
So I'm going to have to put on my baking apron to make some things for my Ds for Christmas! Unfortunately, youngest dgs gave me the creepy crud. No fever, but so congested I could not sleep last night. Lots of coughing too...Ugh. I have an emergency bottle of Levaquan, I took one this morning to keep it from getting bacterial. I am going to get oldest dgs a horse experience for Christmas. He will learn how to care for the horse and then go on a trail ride on a lead line! He is going to love it! I want to focus on experiences this Christmas!
Gracie, still hoping for good scan results for you tomorrow. Micmel, love your grandpuppy! Take care everyone
Hugs and Prayers,
Claudia
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October 30 scares me. I am worried she pushed it too much with the wedding and everything. I wish there was another way to know what's going on. Scares me. Love you Nan!
Yeah I know 18. It's crazy.
Two calcium chews,two jelly multivitamins,one Claritin,one to two 5mg Percocet for mild spine pain, one Effexor antidepressant, three ritilan daily as needed,one Prilosec in the am,a vitamin b-12 for good nerve health, one evening methadone for pain management, one amptripline for neuropathy,one anastrazole daily, one ibrance daily, one 10 mg Valium at night, and finally one Percocet 10 mg for sleeping and aches and pains..... I added it up and it's 19!! All those things. Amazing that one body can handle. We are amazing creatures, our bodies are. But if it keeps me stable I'll keep it up!
I really hope Nan comes around soon!
~M~
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Claudia~Wow! You're always so busy. It is amazing to me that you just keep going and going and going. Just like Mae. You're both amazing to me. I am glad you had such a good time making those memories! I still can't believe Thanksgiving is over. I have not one decoration up! I got great scan news, you would think that would give me energy!!!? Fatigue doesn't understand good news I have come to learn. I have been shopping, it's been slowly coming along. Make sure you rest up from your busy week! Especially since you feel yucky. Wash those hands. Glad you're home safely. I have never been to Texas or Florida. I am not a good judge of either ! I am taking it easy today. Been a busy few days here as well. Hope everyone gets through crappie Monday! Much love ~M~ I love lemon meringue pie! It's one of my favorites!
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Gracie~Thinking of you and hoping for good test results. I am with you! Please know good vibes and good thoughts are coming your way! Much love ~M~
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Micmel, 18 pills a day? Wow, I cannot imagine. I would never keep them straight. Maybe it is not the Ibrance, but another medication, that saps your energy. As you said, they are working, so you have reason to keep taking them.
Claudia, You could do a commercial for the Florida tourism industry. You make it sounds really good even to someone like me who really, really, REALLY dislikes hot, humid weather. It makes me very grumpy. If I lived there in the summer, you would probably see me on the evening news yelling for no good reason at some innocent person in the middle of some downtown area. I am sorry that you picked up a bug. I hope you feel better soon.
Well, Chelle, now you have two recommendations for your move. It is a bit more expensive here in parts of New England than in TX and FL, I think, although NH is not nearly as expensive as the Boston area. I would love to have you as a neighbor, of course. In fact, all of you are welcome here. I think I can speak for Lynne (Manch) and say that we two Lynnes will greet you with open arms. You will have to get through the cold winters though, and that would be an adjustment for some of you. We are about an hour from Boston (actually longer than that with the usual traffic, but I did make it in an hour at 3:30 a.m. last year), an hour from the ocean, and an hour from the mountains. Of course, our mountains are just little bumps compared to Colorado's.
I am making pretty good progress on my Christmas shopping. I still like your idea of giving experiences, Claudia. Those experiences will create memories that will last forever.
Has anyone sent Nan a PM to ask how she is doing?
Hugs and prayers from, Lynne
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50's~ I did send her a PM about two weeks ago. She always answers, this time she hasn't. I Am hoping she's just feeling so good, she's out doing anything and everything with her family! Although It worries me. That's what I'm hoping for!It's like a little family. I need to make sure all my peeps are ok! I am hoping and hoping she willl check in!
I have never been farther that Connecticut, but did go to Canada, when I was a senior in high school. I don't like humidity and I don't like extreme cold weather at all. I do however wish, there was a way we could all be in one place together in person. To talk to each other. Just like we do here, but be able to meet and give those kind hugs. I hope that all is ok with Lynne(man) also, it's been a fewdays now! Hugs and love to all. ~M~
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Lynne(50's), Honestly, summer is so bad here, there are days I am absolutely miserable! I totally understand the madness also. I have a difficult time breathing, the heat and humidity combined, exacerbate the hot flashes, the bugs are horrid, but, now that we have our swimming pool in, that has really helped. Also, we are only 40 minutes to the beach, which helpd too. We are planning to take small, weeklong, horseback riding and camping tripsa to the upper elevations in the NC mountains. That will be great! We are going to get the dgs's more this summer...YAY!! I know summer is miserable, but the rest of the year makes up for it! Like today, 73 degrees, beautiful sunny day! It is forcasted to be that way this whole week! Love it! Sorry I sounded like a tourist add, because when people tell me they want to come here in summer, I ask if they have lost their minds! And don't get me staarted about Disney and such in summer! Hell on earth! We used to live in SW Florida, and I used to say it was the prelude to hell in the summer! There is not enough money to get me to move back there either! Middle Florida is its own kind of hell! No sea breezes to temper your days...Ugh! I have never been to NH, but think I would like it. Winters don't scare me. It was the sand vs mud, why we moved here. So we could ride more often. I have been to Maine and loved it. We have always wanted to go to Vermont. Someday...so many places to go and so little time. I would love to meet you and Lynne(man).
Micmel, I can't remember if I congratulated you on your NED status! What a blessing. T everyone with NED and stable scans... Hurray! I cheer for each and everyone of you! I also, have PM'd Nan and heard nothing back. I say a special little prayer for her everyday. I have even lurked on the brain mets thread a couple of times, hoping to see her. I don't know how else to find out how she is doing. It would be lovely if we could all meet face to face! The pub is growing all the time!
Leapfrog, I have been following your story while Iwas away. So incredibly sad you are having to struggle through all this, while dealing with MBC. I can't even begin to know the range of emotions you will be going through now. After so many years together, it is quite sad that this is the end. You must do what is right for you! I do know that you are like the caterpillar in its cocoon, and soon, a new beautiful, butterfly will be emerging! I can't wait to see the butterfly!
Claudia
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I do believe Lita also hasn't posted anywhere in a few days. It says she was logged in yesterday, but didn't see any posting. Hope she's doing alright also. It's so sweet to build these friendships , but then when you don't hear from them or see them. It starts to freak you out. Just sending out good vibes to everyone. Claudia ~ thanks for the good wishes. It means a lot. I would love nothing more than for us all to be reaching that, status, all the research that Is being done, it should have already have happened by now! Much love~M~
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I hope everyone had a nice Thanksgiving! Our's went well.
Saturday, we went for another Mini Cooper ride with 4 other cars, and 7 other people. Weather was nice, and after our breakfast stop, we put the top down again. Yup, 45 degrees, heat and heated seats on, windows up! LOL We then drove to my in-laws. Their pump in their basement stopped working, so my hubby fixed it for them (they couldn't do laundry for a week). Quick fix. Stayed about an hour. Then had to pick up our 2 grandsons on the ride home. Our son-in-law's class reunion was that night, and we watched the boys for them for a few hours. Slept great that night.
Yesterday, my hubby and I went to the Patriots/Dolphin game at Gillette. He gets free tickets from work, a couple of times a season. Great seats. Lower section, row 26 from the field, 40 yard line, Pats bench in front of us, and we were in the sun (it was cold and windy). I could actually read the names on their shirts. Lots of fun! Here is a pic of the two of us in all our layers.
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Micmel...thanks so much for sending me to this thread.
Bigbhome...thank you for your beautiful thoughts. I have been on a rollercoaster of emotions but my friends have been wonderful. It was my birthday last week and I had two visitors on the weekend. Both brought me a pot of flowering plants because everyone knows I love flowers and growing things. Another friend who has been offering help consistently contacted me so I asked her if she would help me turn my tiny balcony into a garden and she's not only willing but excited about it! We've been sending each other links to various ideas and she will be coming next Tuesday to make a start. There isn't a lot of room on the balcony and we need to remember to leave enough for me and my reclining lounge! but we think we can do a lot with it. I'm thrilled that I can have this so quickly and the thought of it has lifted me out of the depression I was slipping into.
I'm new on this thread but I know some of you from other threads and I'm also concerned about Lita.
I'll catch up on your posts gradually.
Micmel, you're a sweetie, thank you.
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Lynne(Man)~so happy to see you and your smiling face! Looks like an awesome time at the football game. I would love to be able to see the eagles that closely. I have seen the flyers up that close that I could read the jerseys. It was my birthday gift, and I am an officially hockey nut!!! How cool is that Lynne!! I am happy that your thanksgiving was a good one and that you enjoyed your visiting with family. Even if your DH had some maintenance to tend too. Sounds like my DH and his computer skills, since it's what he does for a living, everywhere we go, people ask. He helps family and people he really likes and I care for. But it gets to be too much, when everywhere we go people are asking for help with computers. I am glad your DH was able to help out, those things get very stressful. Especially on a holiday day weekend. Cha Ching! In the cost alone. Glad to see you're safely back. It's going down to 27 tonight. It's getting colder and colder day by day. Much love to you all! Precious ladies ! ~M~ Stay warm and cozy.
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Leapfrog~Claudia is one of the original people who helped this thread and the family we have built here. We welcome everyone and we have formed a real caring close group of friends and sisters. Everyday I look for my sisters, and everyday their progress and safety is something I care very much about. I am thrilled to see you here. I hope you will share with us and know, Your thoughts and feelings are important and sometimes always talking about symptoms and etc gets to you. I am also excited about your garden,I love to garden as well, it's very therapeutic!! I hope you will share beautiful pictures with Us as you determine the look you'll decide on! A way better way to deal with stress, I am glad you're in better place now, no one needs to go through what you're going through. I am also very happy for your devoted son! Again big welcoming warm hugs! ~M~
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Well ladies, I'll be the one with scanxiety next. My tumor markers have been consistently in the 40s for a long time. Then they went to 63. Onc wanted to wait 3 weeks then redraw which I did last week. They are 62 on the redraw. My onc wants to scan because she doesn't like the uptick of the tumor markers. All other bloodwork is "perfect" according to her, including liver enzymes which she monitors closely. So the scan should give us some answers. But I HATE the anxiety that comes with the scan. I will schedule it as soon as the insurance approves..just want to get it over with and know what we are dealing with.
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Lynnwood~I am hoping for not only a quick scan, but quick answers. Sometimes tumor markers flaring slightly can mean meds working. Mine Hoover around 20 but at one point went up to 42. It was the medicine doing it's work. They eventually went back down again, and been stable thank goodness since. I remembered you mentioned you may need a re drawl. I am sending thoughts of strength and love. I know when I was up on my scanxiety my onc nurse said if it was major progression I would know. from what I have read. Tumor markers can run even into the thousands. Take a deep breath. I am sending you calming doses of Valium and hugs. Much love ~M~
Edit: Just noticed Lita posted today, she's just overally exhausted, and Is giving herself a break!
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Micmel...thank you for the welcome. I'm happy to be part of this little band of sisters. I almost lost you again as I forgot to add it to My Favourites so I'll rectify that.
I'll gradually get to know you all and share more of myself. I'm not one for being shy! I'm seeing the oncologist tomorrow for my five weekly check up as I'm on a Letrozole/Ibrance trial in Australia. I've been on it since the end of January and have been dropped from the 125mgm dose to the 100mgm dose but so far I've always needed a two week break at every cycle.
I just noted your comment about tumour markers and will add my story to the list so that others can benefit from knowing TMs can do strange things. When my MBC was diagnosed, de novo Stage IV with extensive mets to the bones, in October 2016 my TM was 784. Immediately after my BMX, it shot up to 1,200. After two months of Letrozole only treatment it was in the 900s. Ibrance was added at the end of January this year and every month my TM dropped by more than 100. I was elated! I thought I'll have this thing licked in no time. By the end of May it was 390 but then in June it shot up to 520 and since then it's been between 510 and 450 each cycle. Tomorrow I'll find out what it's doing at the moment.
SO happy to know the news about Lita!
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Leapfrog~I am so happy to see you here again. I know that seeing your oncologist makes you crazy, i saw mine Friday and no matter what happens, each time it feels like I swallowed someone's fist. Like a gut punch, I am sending you all my strength and my hugs, to get you through your visit. I am hoping your doc will say sometimes it's takes at least 6mons to see improvement even more than three. I started my 13 month last week. Fatigue is my biggest complaint! You're a strong beautiful woman and you'll fit right in here. This thread is a loving place where we lean on each other and don't get lost in the shuffle in everyday life with MBC. We talk to each other, listen, build each other up, we have a wonderful, strong group who has come together to make a wonderfully loving thread. So glad you're here to share it with us. Wrapping you in a warm bear gentle hug of course! Much love ~M~
Edit: wishing you a Happy Birthday 🎉🎁🎈🎂 albeit belated!! And many more
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Micmel, your story about your tumor markers made me feel a lot better! Thank you so much for sharing! My highest ever was 203 when I was diagnosed stage 4. My onc said that's ",low volume" because as you said, the numbers can be in the thousands. I guess I should be grateful that my onc is taking a proactive approach to things. I have been on my first line treatment ( Ibrance,Letrazole,Xgeva) for 32 months now with no progression so I'm always thinking I'm on borrowed time with this treatment.
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Micmel...thank you darling but I don't get flustered about visits to the MO. I'm the sort who takes things in my stride, mostly. I know my tumour marker is high but I know in my heart it will come down, if not yet, it will at some stage. I know my breast cancer is incurable but I've been told it's highly treatable and I believe that with every fibre of my being. I'm always positive about that. Other things in my life have thrown me off balance of late...those personal issues, but seeing the MO is just a routine for me. I see him every five weeks because I'm on a trial and I don't expect a lot of change. I will be starting on my twelfth cycle tomorrow, all going well, so it's, as I said, routine now. Fatigue and mouth ulcers are my main side effects but gelclair takes care of the mouth issues and I'm getting used to the fatigue and can just work through it most of the time. If I get too tired, I rest for a while. I find talking the most exhausting activity, strangely enough. It's because I tend to have brain fog, caused by Ibrance, Letrozole and high dose pain killers and sometimes I find I just can't project my voice or find the words I want. It's so much easier typing.
Lynnwood.... as you would have seen my tumour marker was 1,200 one year ago and it's now well below half that. I trust Ibrance and Letrozole will eventually bring it down lower but they're slow working treatments. I've been told I could be on this treatment for years so I'm hoping I'll be like you and still be on it two years from now. It must be worrying to have your TM go up like that, though, and my thoughts are with you. My MO told me when my went from 390 to 520 that we will only worry if it keeps going up and stays up. Since then it's been zigzagging, so that can happen.
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leapfrog~I wish I could be more like you in that way. Anyone mentions the doctors and I hate it. I agree it does get routine. But I also worry like Lynnwood that ibrance has worked so well for me I would just take this pill forever and be happy if the powers that be should allow. I Am glad to hear of such strength from you!! lol like I said, this thread is made up of some really wonderful strong ladies !! You're clearly one of them! Much love ~M~
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Lynnwood~ 💕💕I am thinking of you. I think you you're experiencing tumor flare and honestly the marker of 64 isn't bad at all and like you said. Blood work and everything else was good. That speaks volumes. If everything was out of whack I'd be a little more concerned. But a rise in markers can completely happen when the ibrance is kicking some cancer a**! Big hug my dear friend. ~M~
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Hi Ladies,
I keep reading/scrolling and then getting busy and tired before responding. It seems like I've done too much activity for a few days. Yesterday and today I'm taking it easy.
My RBC is low 2.83 and WBC 1.7 so I feel drained. My blood work only is a CBC so I don't see tumor markers. Do you have to request tumor markers in order to get them? This is my third week in the cycle of Ibrance. I feel that I usually am exhausted and depleted by week three.
I'm happy that everyone's treatment is allowing them to be active. It does wonders to boost my mood.
Have a great day everyone and I also hope that someone hears from Nan soon and that all is well.
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Tanya~My onc just runs the ca 27.29 and the CBC at the same time. He has always ran my tumor markers from day one. I am kinda glad he did because then I know how mine read. The reason it was so hard to diagnose me, was because I had perfect bloodwork and only a lump that they were following (first thought was cyst because of my age. Uh not so much). So it gave me a baseline tumor marker to refer to, every time I have my blood work done. It kinda keeps my depression in check to know what's going on with my blood work. I am sure you could absolutely ask your doctor what yours are. The patient is the Boss. Get some rest. Big hugs for you. ~M~
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........I had to laugh when I heard the actual story behind this picture, of course when you first look at this picture your mind takes you to think that this mother is quite a dancer,but in reality, it was wintertime and there was a massive snow storm, this child's mother works at A hardware store. This picture her son drew because everyone was rushing to the store to purchase shovels lolololol. I had to lol when I read the article further lol. My laugh for the day. Hope everyone is well. Much love ~M~0 -
Too funny! These two are quite a pair! I had to remind Dh that he is the adult! Lol, reminds me of when Ds was young!
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Claudia~ you have a beautiful family honestly. Your DGS is a precious little angel. He is so lucky to have you both. It's amazing the happiness that radiates from your DH. I love the background also. It looks really peaceful there. Nice breeze,some sunshine. I would love to live in the country more. I am thankful that my infusion center is only 5 mins from my house. My onc is about 35 mins away! But I grew up on two acres, I just love your land and property. So very nice ! Lovely family lovely home! Much love ~M~
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where is Mae? lol I am hungry, she's always posting delicious looking food. I am wondering what she's having for dinner. Lol. I think I should eat something. lol hope you're doing good Mae. Just thinking of you ! ~M~
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Well, didn't get the news I hoped for. All three of my tumor markers are up. One by quite a bit. so I have a PET scheduled Friday and a bone scan next Tuesday then I see him the week after. He said Ibrance is next for me, so I'm thinking he's thinking there's something somewhere.
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Gracie~I am sorry that you didn't get the news you were hoping for. But there is definitely more things down the road. I am on ibrance and I know Claudia and Tanya are as well. Like 26 cycles. I myself am on cycle 13. The fatigue is there. But it has kept me NEAD...I am also on anastrazole and I am hoping to get many many many more,cycles out of it forever would be fine with me. I just want To be able to take my medicine and do the best i can physically! It can work wonders! I am sending you big warm hugs and hopes that ibrance kicks some cancer a**! Love you my friend ~M~
Pleas let us know what is happening if you feel up to it. We will be sending you thoughts and strength! Think of me in your pocket when you're scanning !!
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