My Husband, My Life, My Love, My Family, My Cancer
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I had a lovely day myself. My
Sweet DH surprised me with a live Christmas tree. We always have artificial and he knows me, I adore the real tree. He said pick whatever one you want. So I did. We walked the lot holding hands together and laughing. It was a perfect day! Life can still be meaningful
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Mel your DH sounds like a peach! I love the mental picture of the two of you in the tree lot!
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Mel,
That was very sweet of your DH.
I had a good day yesterday also. I finished addressing all my Xmas cards and finished wrapping presents. It feels so good to have everything done. Now I can just relax.
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thanks Santa~ he is pretty amazing, if I don't say so myself. I have been gifted with an incredible love in my life. That is the reason I fight. My kids also of course Everyone should experience this kind of love and devotion. Unfaltering for one day, before, during, and after diagnosis. My rock,my life , my love. I had such a lovely day. Now that the tree has reached room temperature, today we are going to decorate it together just he and I. I'm so in love Even after 16 years. He makes my heart leap... ☺️ 😌
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Simone~I cannot say I am anywhere near done. Lol. Geeze you’re putting me to shame. I’m glad you had a good day also. We need them every now and then to remind us, life is still precious. Just more complicated!!!
Mae~ Hello sweetheart, good to see you Busy is never bad. Good to see you friend0 -
Simone whoa!!!!! I have a lot of catching up to do!!! My tree is up but not decorated. My grandkids are coming over to help me decorate the tree this afternoon. Yay!!! I'll start some cards today while I'm watching a football game. DH is making some chicken chili for supper when he gets home from work today. Your DH sounds so wonderful Mel. Mine cooks and works his keister off to make sure I have what I need. But he has absolutely no talking/communication skills. This is all very difficult for him and he copes/takes care of me by DOING things. So I honor that. And I do love it so when he walks in the door. That feeling....I know my best friend is here making me some good food and he's going to make me laugh or we'll watch a tv show together. I wish we could have some honest conversations instead of dancing around things but I have to let him do that in his own time. And we go to therapy together so that is a very lucky thing!
This fatigue is still kicking my butt this weekend. I can perk up a little after a meal, or an outing or even a little exercise but it comes back. Body aches and just too tired to feel like doing anything. Ugh. Yesterday when I was getting ready for the piano recital I was thinking I didn't know how I was going to do it. But I pushed through it. So it can be done. I'm eating potassium rich foods and taking immodium. Hopefully that's working. I'm eating foods to get my platelets back up a little. Slowly but surely.
I think I said a few days ago that I'm the sort of person you'd never find in the medicine aisle at the grocery store so taking Immodium or even Advil is big for me. But I am now officially corrected and here to sing the praises of Prilosec My heart burn has not bothered me ONCE since starting it once daily on Monday. My raspy voice and having to clear my throat is about fifty percent better! Huzzah!!!
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Frisky, I am so sorry the outdoors had such a dramatic, painful attack. I hope that the tylenol and all will help as soon as possible. I am also sorry about your possible progression too but don't blame you for trying to prepare for it as well.
Sondra, so happy to hear about your shower, That certainly is a victory and feels so good. Congratulations.
Booboo, I had a really good time at my brother's place. SIL was surprised. It was my first surprise birthday party and it was a surprise for her. Poor thing is tuckered out. Her mom took her shopping in the US while DB and niece got things together at their house. I did UBER there and home. Worth the cost to save people having to drive. Saw people I used to know as well that I worked with as DB, SIL and I worked at the same restaurant for a while. My DB and SIL have been friends and stayed in touch with a lot of people so it was nice to see SIL enjoying the surprise.
DB thought they would be having another birthday dinner today but due to SIL being exhausted, they cancelled that which was totally understandable and not a surprise. They may be used to being busy, but that was an insanely busy day for them.
I have just been washing my bed linens a bit at a time today with the odd bit of housework. Using that for most of my steps today. Little tired, honestly surprised I was not more tired being out so late. I do not usually go out too late at night.
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Friends. Today I show up with a situation that is troubling me deeply and I don't know what to do or where to go so I come here with it. It is not cancer related. But it is life related, and you all have one of those too!
My DD. She is over 25, not yet 30. Single. Never married, no kids. She hooks up with one loser after another. Her relationships are full of trauma and strife and endless drama. Not just interesting level drama but extreme level drama.
In the last 2 months she hooked up with some guy who turns out to be an addict. Her life has now become one of babysitting him, lugging him to the hospital when he gets bad drugs. My mom feeling? Throw that piece of junk back where you found him. Do NOT complicate your life with this man's mess and problems. He was and is an adult who had before him all sorts of choices and he made the ones he made and he is where he is because this is where he decided to be, one line of coke at a time. This is not an accident. This was a course of action that required repetition to get here. It required a dedication to not thinking and not straightening up. As she texted me from the emergency room at the hospital I said WALK AWAY!
She accused me of (edited for a public audience!) all sorts of bad stuff. She is being the good person, rescuing someone in need. You can't rescue an addict. You can't. You can get beaten by one. Hurt by one. Betrayed by one. Sucked down the toilet by one. Your love is NOTHING in the face of their addiction. They love their junk more than they love anything else. Hate it and love it. All you can do is support an addict who is taking every step to help themself. But no one can take that step for them. No one. I tried to tell her this. The ONLY way to support an addict is to encourage them to find the help they need. But being the girlfriend sitting in the waiting room of a hospital emergency with cocaine in her pocket IS NOT HELP!I am struck dumb at my DDs willingness to turn her own life and own potential into trash by getting hooked up with this guy. There is no good outcome here. This relationship is new, not solid, has no history, was very flakey to begin with. Just...walk. She is not in love with him. He's not in love with her. And even if love was a factor, drugs trump love every single time. WALK!
She ended our texting with 'thanks for the moral support'. You don't need support! You need a brain transplant. THis is not your battle. He is not the father of your children. He is not someone you promised for better or worse. He is some guy you met on a dating app. The best support I could give is to drive to hospital and kick her ass. I want to save my daughter and the older she gets (and the more insane choices she makes) the more I realize myself that you can't save anyone, and I can't save her! I am freaking out.
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Sorry about the deleted post. Changed my mind. It seems quiet here today. I hope all are well and that the sun is shining wherever you are and it's warming your heart. Or your fingers, depending on your local weather!
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Hey ladies
Sondra that shower 🚿 must’ve been fantastic.
Went to the gym yesterday and walked on treadmill and did stationary bike. Went out to dinner with some friends last night so today I’m taking it easy. Did change bed linen and then laundry.
Take care all
Tanya
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Sondra,
Way to go! Isn’t it funny how we take doing everyday activities for granted? I am so guilty of that, and lately I’ve been verbalizing my gratitude for so many of those things. I hope you continue to progress so you can bathe by yourself. It does feel so good when you can triumph over adversity.
Frisky,
Fatigue is seriously taking away my QOL. I live in the most beautiful place imaginable, but I’m not seeing or doing much because I am so tired. I totally get it. I’ve had progression too, and the reduced dose of PIQRAY is not helping much. I just don’t think this drug is for me
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hello Ladies !
Sondra~ that is a big damn deal, that shower changes everything... I got a shower chair for days that I should get dizzy or tired, I sit down for safety reasons. Every since chemo my balance hasn’t been the same. It helps tremendously. Not expensive either. Good for you.... you’ll sleep better also .
Tanya~Hello lovely. Good to see that activity I’m amazed at your stamina!
BooBoo~Hello lovely woman. Hope you’refrelijg better from those side effects.
Runor~ good to see you... hope you’re doing ok. Must have been one hell of a post. If you deleted it! Hugs my friend..
Mara~ hello!!! Darlin!
Candy~Hi there.
Moomala~I’m still amazed you teach piano. I loved my piano teacher. She was a doll. Just like you!
Today the tears hit, when I started to decorate the Christmas tree 🎄.... all the ornaments of past times of when they were little young kids. Times I can’t ever get back. Then the fear of “will I have another Christmas?” Where will all of this history And my ornaments go? I don’t want them destroyed. Or just thrown out. Hopefully my son will want them since some of you know the long saga with my daughter. Some new ladies may not. I’ll explain again should you not know the sortid long ass story. I cried some ugly crying in my DH’s arms. He held me and told me how much he loved me and that he worries and is scared too. It was surreal still even after four years of this. Like I still can’t believe I have MBC. I never imagined in my worst dreams that would happen to me. But then again it was my worst fear. Came true. It’s been a rollercoaster day. But our tree is lovely. I’m thrilled. It’s a blue spruce and it’s decorated. When I came down stairs. My Dh has all the ornaments laid out with the lights ready for me. He got up early to organize them for me so they would be ready. He knows I have limited windows of functionality and I needed to hit it hard while I could with mister adderall. It was so touching and kind. The things this man does. How can I be so very blessed and cursed at the same time? Torture honestly. Truthfully and whole heartedly. Crying is exhausting. I’m now spent !0 -
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Mel....that's a beautiful Christmas tree. Congratulations!
Your story also touched me because I experienced something similar today when my partner helped me transplant this huge plant in a larger vase. Things too heavy and cumbersome for me to handle by myself..I was amazed how well and quickly everything turned out, and I keep on returning to look at the results with a big smile on my face.
Booboo, sorry to read about progression...I know the PIQRAY is really tough on people...do you know what's being recommended next? I find knowing helps me prepare psychologically to the dreadful unknown...
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Evening to all.
Mel- I read your post about having a good day today getting your Christmas tree and spending time with your husband. I am glad for you. Then I read your post about getting emotional thinking about will this be your last Christmas. I too think like that about certain things. I decorate my small house for the seasons. Nothing major. Just small seasonal decorations. I was putting away my fall decorations on Thanksgiving afternoon and putting out my winter ones. I too wondered "will I be here next fall to bring out the fall items again". Always in the back of our minds.
Today I mentioned to my sisters about a podcast I listened to concerning a young woman with MBC. I asked my sisters to listen to it sometime. Went over like a lead balloon. I know they have no intention to listen to it. Denial? Or they just don't care. The conversation was dropped. Oh well, back to dealing with this all by myself.
Mel- Your picture of your tree is pretty. I do not decorate with a tree---my cat would have it torn down in 2 seconds. LOL.
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Candy~ that is exactly how my Mother is. She just immediately will change the subject or even get annoyed with me when I want to Explain to her. Actually my DB is also like that. He has his own health issues I know , so I’m sure that has a lot To do with it. He just doesn’t have room to worry about the fact that my life is going to be shorter, when he had a massive Heart attack this year early. So he kinda gets the mortality fear and 👋 slap! I hate the feeling of worrying about time. Can’t change csncer and can’t change time. Ugh!
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Good evening everyone. I so relate to the fatigue. I am still making peace with being able to do very little. I am usually able to cook dinner and count that as a real achievement. We have a couple decorations up, and I am looking forward to helping DD with our live tree. We almost went artificial this year, but DD really wanted us to continue with our live tree tradition. Its in the LR, waiting on lights, but in the meantime filling the air with that wonderful pine scent. Mel, your tree is delightful and I hope it brings you happiness every day.
I think of you all everyday and hope things are going as best they can.
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Movingsoccer~i had always loved real trees. One year my step Mother gave me an artificial tree because we were a young couple starting out and trees were expensive. So I’ve used that one ever since. If I’m honest I’m very bad at watering things. I always just forgot to water them. Then the needles drop like crazy. End up In my Socks. But this year I’ll remember. My DH won’t let me forget.
Post a pic of your trees ladies!!
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slow day... must be the weather. I slept all Day long. I was worn out from the weekend with DH. Tomorrow I'm hoping to be more productive. It rained all day here also. Awful to even go outside So it was a good day to sleep. I hope everyone is doing good today and got the rest they needed. I hope people will share their beautiful tree pics! (If you even celebrate of course!).
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I feel like this is the living room of the MBC community. I‘ave posted this on the Xeloda thread but wanted to check here from anyone who’s taken Xeloda the past (or had/have brain Mets).
I'm on seven days on and seven off Xeloda for a few months. By Sunday my feet are on fire and hard to walk on and my hands hurt too, but they usually start to heal on Monday of my week off. But the end of this past week off my hands were still really sore and feet a bit so MO told me to take a week off. But my question is on nausea. I've only had slight nausea but I'm on day 9 with no Xeloda and I've been feeling really nauseous for over a week. I've had brain Mets and am worried that may be causing the nausea. Has anyone has nausea that continued on week off Xeloda or had nausea only as symptom of brain Mets.
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hey all! I’m not religious but love the holiday lights and yummy smelling pine trees and the food! Beautiful tree Mel!
Frisky how are you doing on the navybean? Has that reaction of all over body pains calmed down?
I’m having insomnia. CT and bone scan in the morning. The MRI came back abnormal but my MO is asking me to stay calm till we at least get the results of these other two scans.
I felt pretty confident that my last set of scans were going to to be okay but with this set...I’ve been more nervous and anxious.
I FEEL like I think I am calm right now but clearly I am not cause I can’t sleep and nothing on tv is remotely interesting so I figured I would check in.
heres to amazing showers, new lines of treatments working, Adderall (sounds nice!), offering one another love and hugs and a place to laugh cry and share.
I’ll report in again soon I’m sure!
love
Your Philly Ga
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Oh man Philly, thats a tough row to hoe this close to the holidays. Are you scanning with results before xmas? Abnormal could be anything - did the MO indicate where the areas of abnormality are or just tell you to get the other two scans so they can correlate? Best of luck with this!
Nothing much happening here, but I did break down and get a hair and eyebrow appointment for later this morning, at a local place within my current walking range, not my normal guy. I just can't deal with this much hair on my head anymore, and I figured any cut was better than no cut. I can go back to the regular guy when I can walk! Maybe its just me, but I like to look halfway decent when I see the doctor, and that's getting harder to achieve with the current hair length.
Given the grocery store is nearby, I may make a foray to get something fun for lunch - haven't been in there in at least a month and a half!
Have a great day everyone!
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hey Philly I'll be in your pocket lending support this morning as you go through both scans. Hopefully they will all correlate to good news.
I have not started the Navelbine yet, I didn't want to rush into a new treatment, while the Doxil was still running through my body...and yes gratefully the skin discoloration has abated since it first appeared. So all is back to normal.
It's been cold and rainy here in Manhattan, so I haven't been out much. I'm pain free while hanging around the apartment, but will venture out this morning for grocery shopping at TJ's.
I remembered this imported German strudel—that I love—they sell only around the Holidays and I want to get some before they run out...I'll also get some panettone, a real addiction for me.
Sondra, I know what you mean...I need a haircut as well and will have to make do with a hairdresser nearby because my usual one located is a bit too far...
Best wishes to both of you...
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Its cold and rainy here in London too - of COURSE it started to rain just as I headed out to the hairdressers
She did a tolerable job although I was happy to catch her before she started in on the top bit of hair because she was going to go a little too short which would turn my hair from short and fun to power lesbian. My normal guy is from Naples and is very passionate about hair (and other things), so I can only imagine how hes going to go off when he sees this next time. No matter, this will be far faster to wash and dry and so much more comfortable too.We used to get a pannettone for the holidays and had to stop because they were too easy to eat! Now I make cranberry and orange cinnamon rolls for the morning for a bit more challenge and better management of calories. Unfortunately I cant keep my hands off the bags of pfeffernusse cookies, however. I really really really miss Trader Joes though. Always something fun to find to eat there and such good prices on everything else. I worked at one to help pay my way through grad school and it was always a smorgasbord of food in the back as they wanted employees to be able to recommend or offer advice to customers.
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Hey Philly, I'll be in your pocket too. If you hear me mumbling followed by me using my first and mibble name, you might want to have me wait in the waiting room 😉
Sondra, now I'm wondering about my short haircut. It is indeed easy to care for and dries quickly.
I'll be traveling a lttle over an hour today for a genomics appointment. My father was also diagnosed with breast cancer last fall. I hope the roads are good.
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Dorimak~Mara I know may have some answers for you, I don't know if she's taken xeloda or not Grannax I think was on Xeloda for a while. Hopefully someone could chime in. I do remember reading that when that happens you may have to adjust the dosage to get The right mix for you. It's good to see you here. It makes my heart feel happy that you feel this is the MBC community living room. That means so much to me. Thank you for sharingthat thought. It's why I created it. Just a place to hang where we talk about whatever the hell we want. I hope your hands and feet let up!
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Philly ~Jumping in for pocket duty as well! Have snacks and mimosas this time. I hope that you sleep tonight, I didn’t sleep well either. I know it’s exhausting. When you do not sleep. Especially when you’re scanning. It’s so frustrating! Everything about cancer is annoying.
I’m not really overally religious myself but I do celebrate Christmas and the main holidays. Sometimes I wish we’d all just save our money... and spend the time Together but seeing everyone sitting under the tree together sharing laughs. I love it.....
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Sondra~Enjoy the hair and eye brow appointment, those things make us feel better for sure!! Sit back and enjoy. (Even though the eyes brows hurts). I’m Envious you have eye brows. One thing that never fully grew back for me. My hair now is down the middle of my back again. I want it to my butt. Always wanted that.! Have a good day darling!0 -
Philly, I am in your pocket as well.
Sondra, glad you like your new hairstyle. I tend to pick shorter wigs myself. Easier to style as your own hair would be.
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Frisky~ I totally understand wanting to break from Your treatment. I had three months of a break when I got sick with a serious sinus infection that turned into pluerisy. I hope navelbine will kick some ass!
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