My Husband, My Life, My Love, My Family, My Cancer
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Scans yesterday. Still progression, so I had 3 choices. Stay the course, Verzenio(so) or Xeloda. I chose Xeloda. I am actually looking forward to being off the hormonal! Since I have had a couple of months to think about this, I feel good about my decision! Dh starts PT Tuesday so now its his turn for awhile. He will have his left shoulder done around the 20th of July. Then its my turn for awhile! The roller coaster of life.
Today I pulled a bunch of weeds, rinsed the horses, went to Wal-Mart then went for a swim. Feels good to get things done!
Hugs and prayers,
Claudia
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Bigbhome, I was hoping for better news but I’m glad you feel good about the plan moving forward.
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bigbhome. Where is your progression? I read a few posts, one of which mentioned something about your aorta. Has that been resolved? Read about progression in your hip, also.I'm, hoping X will do the trick for both.
Taking turns with your DH. Seems like I'm taking turns with my DD. She found out yesterday she will have surgery next week. She's still not clear if it will be a new shunt or a stent. I don't know much about the stent surgery, she's never had one.
Today my DS is taking his last board. It's the oral board for Anesthesiologists. He
Had to go to Raleigh to take it. He's heard that some doctors don't pass the first time. I'm praying he will.
I decided to do a remodel on my bedroom and bath. Now I'm wondering what was I thinking? I literally have to move out of my room and into the guest room for two weeks. It's gonna be worth it, right?
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bighome- I am so sorry to hear about the progression. I was really hoping that it would be the opposite for you.
mae- here I was worried that you would get bored. You have alot happening😊
grannax2- good luck with the remodel. I'm sure it is going to turn out beautiful. I have thought about doing some remodeling of my own.
micm-?how are you feeling? It's exciting news about your daughter and sil. It's even nicer that she wants your help.
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Grannax, My tumors in my left illium and t5 are growing more. The pet scan report does not mention the descending aorta. I' m not sure how I feel about that but I am choosing to ignore it for now.
Remodeling is extremely stressful, however, once completed it is so worth it. I have been living in an ongoing remodel for 7 years! The huge items are done, but we still have the guest bathroom to do, which we are turning into a pool bath. That will be a bear but so worth it!
I am thoroughly enjoying everyone's pictures and posts! I have been going through so much here that by the time I get caught up, I am too tired to post.
Hugs and prayers,
Claudia
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Bigbhome ~ so glad to see you. We love you.
Grannax~ Good luck with your DS and his testing. That’s big stuff! Loving that too!
Love you all. ~M~
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Minnie I agree I want a like button
Sorry about progression Big it sure sucks
And now for my UGH news
Well my PET scan is wonderful BUT Remember the MRI with the big words well I went to my onc yesterday and the Big words mean cancer progression in my spine. I have an appt with a neuro surgeon Tuesday. My ONC said this happens sometimes with cancer in the bone especially the spine. I intend to go camping this weekend anyway. My friend treated me to a massage and my DH treated me to a mani pedi today I’m still crying waterfalls inside.
And yes Lynn I did trip insurance.
Thanks for the ears
Tanya
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Scans were stable, there is some concern about one of my Mets being leptomeningeal,we are starting back on dex.
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Keetmom, I am glad that your scans were stable. Are they going to keep you on the same treatment and monitor the possible leptomeningeal met? I hope that you are feeling better.
Tanya, I am sorry to hear that you have progression in your spine. There are several options available. Let us know what the neurosurgeon recommends. When is your appointment? It's good that you are still going camping. It sounds like it will be a wonderful trip with lots of fun. Life goes on, and progression is no reason to stop enjoying yourself.
Claudia, I would choose to ignore the aortic issue or non-issue, too. I like that plan. If they don't mention it, it doesn't exist. You certainly have been busy. Don't worry if you too busy or tired to post often. Just check in once in a while if you can to let us know how you and your DH are doing.
Grannax, When will the doctors decide between the stent and the shunt for your DD. Prior to surgery or during the procedure? Do you know what day surgery will be done? How long will she remain in the hospital? She is in my prayers. When will your DS receive the results of his boards? I hope they don't make him wait too long. I am sure you will be happ with your remodel once it is done. It will be worth it. Will you post pictures?
Minnie, Good luck with your scans. We look forward to hearing good results on Tuesday.
Lynne, My DH and I are flying to the Bahamas. We will only be there for 4 days to celebrate our anniversary. We will be staying at the Grand Hyatt Baha Mar. It is a fairly new resort. We are planning to relax and unwind. They are supposed to have a good beach and lots of pools. We will not be renting any scooters. We did that years ago in Bermuda, and I thought my DH was going to kill both of us. He stayed on the correct side of the road most of the time, but every time he turned the corner, he went onto the wrong side. YIKES!! I hope you didn't see Stephanie today.
Mae, I am tired just reading about your plans. Well, you won't be bored. I have never been to the Bahamas before. My DH and I plan to stay at the resort most of our stay. We will snorkel, kayak, swim, read, and enjoy oh, and eat of course. Sometimes it is just nice to get away. I have scans scheduled during the week I get back.
I have been baking today. It is something that I like to do, but I don't do it often now. It turns out that my DH and I have very little willpower, so I don't have sweets here very often. I am baking some simple things for Saturday's family get together. I made brownies, cookies, and dinner rolls. The house smells amazing. I think I gained five pounds from breathing in the aromas. I also made hot fudge so the kids can make ice cream sundaes. Tomorrow I will make healthier items like salads. It won't smell nearly as good. Well, I will squeeze lemons for lemonade, so at least it will smell fresh, right? My granddaughter told me that she and my son are going to bring a really yummy dessert. They love to bake, so I can't wait to see what they bring.
Hi to everyone. I enjoy reading all the posts and seeing the pictures.
Hugs and prayers from, Lynne
New flowers are blooming now. Here are a few pictures for you.
This is a mountain laurel. They grow wild here, so I can't take any credit for them. We have been seeing fewer for the past several years. They seem to be coming back now. This is one of several growing near the edge of the woods in our yard.
These are sundrops. They are just beginning to bloom in my garden. There is a bee pollinating the flower in the first photo.
A rose bush that my daughter-in-law planted in the fairy garden last year. It is blooming beautifully. My rose bushes, on the other hand, are just beginning to bloom, so no pix.
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Keetmom~ stable works. Hopeful the other mention fades into nothing.
Tanya~ never like to hear of progression for any of our sisters. I am wrapping you in sister love.
Bigbhome~ sane with you my sweet friend, we understand the pressure and worried that you must be dealing with. Just filled with concern and love for you both. Absolutely family comes first! Love you love you!
Lynne(50’s) beautiful flowers wow. And the shot with the bee. Fabulous timing. Love summer so much. Just. Wish I had some area where I could be alone. And outside without twenty neighbors asking how I am. It’s like peaceful and free.
Grannax~ thinking of your DD and hoping this is something that won’t need another stent. I know how much you worry. We just can’t help it. The mother in us all. Sending warm loving thoughts as well.
Minnie~ in your pocket for scanning. Hugs sweet sister
Mae~ always well planned out. As usual love you friend !
Chelle~ loving the good results my sweet sweet sister !love you very much.
Would love to travel. Today I seriously slept until 1100 then stayed up for a few hours and was back in bed sleeping by 115 out cold again. Then I woke up again at 4. Seriously ? I thought my week off ibrance was a break. Having cancer is a job period! We should get paid. So hard everyday to be who we want to be. Annoys me to no end. Love all you ladies ~M~
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Sending big hugs to Tanya, bigbhome, keetmom and Grannax. Thinkiing of You and your families..
Lynne, have a fabulous time. Sounds like heaven.
Welcome to retirement Mae! You will wonder how you found time to work.
Micmel, sending you a big bunch of energy, hope you feel better.
Scan in morning, going to try to sleep now. Please everyone pray for a good vein for the contrast. Usually it's a nightmare:(
Love to all x
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Minnie ~ we will all be with you and thinking of a quick scan and great results to follow. Love to you....
Gracie ~Hope you're doing well. Think of you everyday.
I know I am already exhausted now. 800 will roll around and I already can't wait for the excuse to go right back to sleep. Love to all my sisters!
Much love~M~
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Hi ladies. My DD thought she would hear about which surgery today but the doc didn't call, hopefully Monday. The surgery will be on Thursday..
DS won't find out if he passed till the end of June. He seems worried, he said some of the docs were very aggressive. That's so unnecessary verging on unprofessional. Keep praying.
I bought all my supplies, made all decisions on paint colors and bought light fixtures. Very productive and expensive day. It feels good to finally doing it. It will be done in two weeks.
Tanya. So sorry to hear about progression in your spine. Let us know what the neurosurgeon says.
50's The flowers are so beautiful and cheerful.
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Bigbhome-Sorry about the progression. I was on Xeloda for 2 1/2 years (my longest one so far). Just hand and foot syndrome (peeling), they had to lower the dose after the first one. I take 100mg B6 daily, use udderly smooth lotion twice a day (and put on cotton socks and gloves until it's absorbed). It helps. It's been awhile since I was on it, but that was the main side effect I had. I pray it works at least as well for you too! Big hugs!
Tanya-Sorry for your progression too. They found my mets, because I was having back pain. I had a compression fracture in a vertabrae (I've had 4 more since) and then they saw all the mets after I had an MRI. 4 have been repaired with kyphoplasties, and one can't be repaired (too far up). I don't blame you for still going camping. I hope you can go on your trips too! Big hugs to you too!
Minnie-Good luck on finding a vein tomorrow, and I hope your scans come out well!
Keetmom-Stable is good!
Lynne-Beautiful pics again of your gardens! Enjoy your time in the Bahamas and Happy Anniversary! I did not get Stephanie on the way out yesterday, she was on the phone!! Come to find out, they had already set up my appointment for my next chemo (on the 5th) and my next oncology appointment 2 weeks after that. I wish they called me and let me know. I can do the times and dates they picked (I don't have much of a life), but occasionally, I actually do something! Today I had my chemo. I didn't have to wait for anything (because of having to do my PA stuff yesterday), and got plugged in right away. I was out of there after 2 hrs (since I did my other hour yesterday). I didn't have to check out (because I already had my appointments. I told them to have a nice weekend. They took tumor markers last week again, since they went up a lot from the previous 2 weeks, and they went up even more. They took them yesterday, but they didn't have the results back yet today. Not sure what she's planning on doing if they go up again. I guess I'll find out when I see her in two weeks. Maybe she'll have me do my scans sooner (I just had them done a month ago, and they were fine).
Grannax-Sorry to hear about your DD. I'll say a prayer for her and your family.
Today I met a fellow Stage 4 (lung cancer) woman who was sitting across from me. We got to chatting and ended up adding each other on facebook. She's raising her 3 grandkids because of a daughter with addiction issues. I know too many that are in the same boat (2 of my friends lost their kids in their late 20s and are raising their grandkids too). It's so sad. I just thank God my kids didn't get into that. They could have just as the others did.
We are leaving tomorrow at 8:30 in morning (guess I should start packing!) for our Minis on Top weekend. We will take a drive with 8 other cars, to head up north (only 2 hrs away), but taking about 8 hrs to get there. We will go over the border into Maine, and stop for lunch on the way. Getting to the hotel around dinner time. Weather looks great (I just hope my steroids hold off the side effects until I get home on Sunday)! We'll have the top down for sure! Still not sure if I want to take the ride up the mountain again this year, on Sat at sunset. We'll play by ear! Last Sunday we went to Bike week in Laconia, with the trike. I bought some scarves from a vendor without trying them on. Well this big Irish head does not fit in them. Luckily, the vendor gave me a card, so I emailed him. We are going to stop there on the way home, on Sunday to see if he has bigger ones, can make them bigger, or he'll give us our money back. He said he'd still be there. I really don't want to stop, it's suppose to be 90 on Sunday, and it's Father's Day, and the family is coming over, but we're doing it. It's on the way home at least.
I'll guess I'll have a lot reading to do when I get back on here (probably Monday). This page just seems to fly!
Have a nice weekend everyone!
Lynne
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Lynne (Man)~ have a blast and a safe trip. It's supposed to get really warm from what I read. Bring your sunscreen and hat... I hope you and DH have A great time with all your fellow mini owners... stay safe. Much love ~M~
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Good morning
Lynne NH have a wonderful trip and thanks for sharing about your spine stuff. I’ve had one khyphoplasty and compression fractures now too.
50’s Lynne I love your flowers. I seen the surgeon Tuesday. I picked up MRI and will pick up PET disc today.
Minnie I hope your scan goes well and your results are fantastic today.
Grannax I hope your daughters surgery will have the best results. I pray your DS passed. Maybe aggressive is the nature of the business. My ONC was recommended a surgeon and he said no she’s not aggressive enough. I want an aggressive surgeon for you. Maybe that’s what they want?
Keetmom congrats on stable results.
Thank you all for your kind caring encouragement. Needed you guys yesterday and I suspect I will need you again. I love this thread and I pray for all of us.
Tanya
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Oh Tanya,~ I agree so much support here for us all. I need the love and sisterhood as well. Wrapping you in love and support. Always. Much love ~M~
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Looks like everyone has busy weekends or vacations coming up. My painter is coming today to paint all the thirty planks for my wood ceiling. That way they will be dry by Monday and the real work can begin.
DS got a very sweet welcome home by his little family, balloons and signs and lots of hugs. Surgeons are typically aggressive, I guess that's the nature of the beast. Ha But, DS says it's unnecessary to be rude, especially to a colleague, a peer. I think he's seen some surgeons be rude to his own fellow surgeons and to the anesthesiologist. DS uses respect and kindness to communicate. I'm sure meeting these two peers was unsettling, because he believes so strongly in showing respect. He sees it all the time but wasn't expecting it there at the testing. This oral testing is so subjective, it's hard to know what they think about his non aggressive approach. UGH. All he needs is a Pass (not a Fail) on this one. No scoring.
DD says it's making her crazy waiting to hear the decision from her doc. So, as we all know, whatever our children feel, we feel. I'm glad I have something to distract me for the next two weeks.
I had my vacation, so I dont get another one till September. I'm going to Baltimore with them for a week. We'll be staying on the eastern shore in her friends big beautiful home on th Bay. Anyone live in that area?
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I read all your posts. This is a place of such joy and devastation. Moments of good life, moments that are very dark and bad. Everyone's life has ups and downs, but cancer seems to throw it all into a huge spotlight.
I have been trying to get a small home business selling hand crafted items, off the ground for the last few months. I have been working hard at promoting it, getting the word out through Facebook, driving door to door, dropping off my cards, telling people what I have available. All of this is WAY out of my comfort zone. I am not a salesman. I feel cumbersome and bothersome. Like a nuisance. Which is not a great feeling for me. But yesterday was an awesome day and I made a big sale, completely unexpectedly! I was so happy!
Immediately. Instantly. On the heels of any moment of joy or mirth comes the thought that cancer is going to show up somewhere and snatch it away. Finally, at this ripe old age of mid 50s I'm finding a little something that I enjoy and it makes me feel useful and productive and even returns a tiny profit, and all I can hear is the smashing of the clock as I feel my good time ticking away. I know I might have years left. I know they 'caught it early' (which frankly gives me little comfort after reading many of the stats on this site). But despite what people tell me in way of encouragement, it's what I FEEL that utterly knocks me off my feet. I think it's the biggest thing for many of us. KNOWING where this is going to end. How do you wrap your head around it?
I go longer and longer stretches without thinking about cancer, and that is a blessed relief from the past year! But still, when life is the sweetest, that bitter bitch cancer comes flouncing in the room and craps all over my happy moment. Living in the face of what is going on, or what will be going on, or what might never go on, or what might be going on right now and I don't know it .... that is the secret. A secret I don't have yet. But it made me realize that as much as I think cancer is behind me, no it's not. Is it ever, really? I don't know.
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Funny you should mention that feeling runor. I was telling DH about how many good things are now bittersweet. Any concert, vacation, event has the sting of “this could be the last one”, still enjoyable but tainted by BC. I described MBC as a state of having a foot caught in train tracks and knowing the train is coming but not exactly when. He said you dont have to watch and wait, just turn your back. My first thought was, that’s ridiculous but then I realized, that’s very close to how i live with it. Not denial but not actively worrying either.
I hope everyone is having a good Friday 😀
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Runor and Mae~ I for sure can identify with this feeling for sure. I call it the grim reaper stalking me. Whenever everyone else is having a sunny day, my day is anxious and very cloudy because the sun does not shine through the grim reapers cloak.
Runor~ I think what you're doing with your side business is wonderful. Honey. No one has ever even came Close to saying that you will even reach stage four sweetheart. There is no automatic guarantee. Just be aware of your body and never wait, even if you hear shit like oh it's just a cyst... you're too young. NOT!!! Just listen to your body and allow cancer to fade more and more as you dive into your new venture! 🍾🥂 more power to you strong woman. I adore you! Much love ~M~
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Mae, I remember when I was first diagnosed I thought that I would have one more Thanksgiving, one more Christmas if I were lucky. I said it aloud to my DH, and surpringly, I started laughing. As I said it, I had flashbacks to all the times my MIL had said, "Oh, this could be my last Christmas." I think she started saying that when she was about 50 years old. Unlike us, she did not have any diagnosed disease or condition that would likely shorten her life. She does have a lot of heart disease in her family, and her mother and two of her sisters passed away at young ages. Anyway, my MIL is still alive today, and she is 99 years old. I have never again said that it could be my last ANYTHING because no one ever knows how long they will live. I guess my back is to the train, too.
I have written several poems during the past few years. I finally printed them and gave them to my DH to read. I thought they would give him a written record of how important he is to me and how much I appreciate his support. Instead, it brought tears to his eyes. I feel bad. I realize that I expressed feelings that I have not always shared with him. I know he doesn't want to lose me, and I also know how hard it is to love someone who has a serious illness. This disease really sucks.
Hot weather is coming this way for the weekend. We will have 18 people here for our family day tomorrow. I suspect that some of us will spend more time in the air conditioned house than out in the near 90 degree yard.
Hugs and prayers from, Lynne
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Lynne(50's)~ I agree the disease really does suck terribly. You're so positive and kind. Your DH obviously was deeply touched and seeingthat on paper made it even more real for him. I am giving you a big hug. I am sure the poems were beautifully written, just like everything else you write seems to be. Hugs to you! Much love ~M~
I hate the heat. I never know what to wear. My port makes low tank tops not easy. My third eye. And I don’t think I’ll ever sunbathe again, because of the medicines and the cancer issue of course. I can’t handle the heat like I Used to be able to handle it. I loved the beach... I would be on the beach from 11:00 to 5:00 without fail whenever possible. Not anymore. Air conditioning, at times won’t even cool me down. I hate going out. I hate clothing also. Ugh!
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I know that Gracie no longer posts to this thread, but she is still dear to many of us. I knew you would want to know that she posted news of progression to the Ibrance thread a short time ago. She has a brain lesion and progression in her liver. She already has a treatment plan. Please keep her in your thoughts and prayers.
Hugs and prayers from, Lynne
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lynne(50’s) thanks for letting us know. She definitely is dear to me. I am not quite sure what happened to Make her stop posting here. Never could figure out why that happened. But the focus for me is her knowing I love her and that I am very concernedbut never want to over step. There is always a place for her here and in my heart. I am sending thoughts and strength through the miles. So disappointing, so upsetting. 💔💔 ~M~
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Lynne, have a great Mini weekend, and by the way, my head is a big Irish one too!!
Thank you all for kind words today. Scan done, thanks to 2 very patient handsome male nurses, Jose and Antonio. Vein in my foot worked for the contrast, so only waiting till Tuesday for results.
Micmel, I also have a port and do not worry if it shows. Our temperatures from now till mid September will be 90 or higher. If someone doesn't like the look of it, tough. It's part of me, and makes life so much easier for treatments .
I also went through times of thinking this could be my last ........, but then I realise that no one in this world really knows when is their last summer, birthday etc because things can happen of which we have no control. As my MIL used to say, don't worry, you could be run over by a bus. So I sort of, put my MBC to the back of my mind as much as possible and get on with living how I want to, and trying to carry on doing the normal day to day stuff. Feel better for it too!
Tanya, enjoy your camping. When you reach Morocco you will be so close to me (well, maybe not just round the corner) lol!
Thoughts and prayers to Gracie.
Lynne 50s, I'm sure your poems were deeply touching. We can all forget how hard it is for the partner living with us.
Night night x
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Very sorry to hear of Gracie's progression and sending her positive vibes that her next treatment will be successful. She is missed here.0
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good morning ladies. Hot hot hot hot is all I can say. Stay cool and safe. Love you all.
You too Gracie! Thinking of Bigbhome as well! Much love to all ~M~
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took a beautiful ride winter my DH and went to the dispensary. They really need to get those prices under control. Like a car payment monthly and it’s really the only thing that will keep me lowered off of opiates. Which helps me and my stomach. I learned I lost 21 lbs since my surgery and i have no appetite. None and I can’t imagine it only being 21 lbs. like really I don’t even eat. It’s has to be the hormonals. It has to be. I know the tummy tuck helped but really it was just re positioned is all. Not like I lost the fat entirely. I’m Am sure more will come off. The hunger is not returning at all. But at least I got outside with my beautiful sweet man.
Hope everyone is enjoying the weather! Later this week we are set for 90 degree days a few in a row. Yuck!
Much love ~M~
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I only have two men in my life that have ever really made an impression on me. My father left when I was four, came back into my life until 13 years old ... and then since I began to Have a brain for myself ... I saw the step monster for who she was. So I told her. She didn't like that. So. I lost my father again. Second Time. Years went by with no Communication and when I was 20 we started to talk again but I had to apologize to the step Monster. It wasn't very sincere. But I missed my father. Things were ok for a while, I got Married had two kids and then the divorce was on the horizon. She didn't like that either. Tried telling me what to do. With my kids. Ah no! So again I told her. And again there my father went. This time for good. Losing him a third time during my life. My step father whom I adore and have since I was age seven has always been a good man to me. I love him. He is one that never left. So to him I can say Happy Father's Day.
My DH is the best man, father and person I have ever even met. I Idolize the ground he walks on. Always have. So he is the other man that made the difference in my life. Most men do not do what they say they will do. So in my life I have learned and try tolive by. Actions speak louder than words. Happy Father's Day to the good ones.
Much love ~M~
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