My Husband, My Life, My Love, My Family, My Cancer
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Morning all.
Not much going on here today. Just wanted to say Hi.
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Hi Candy. Hoping for good results for you. I am finally tackling my filthy basement today but will take a break for Pickleball pretty soon. It's funny b/c despite my aches and pains I feel great when I play pickleball or golf. With pickleball it must have something to do with endorphins. No more loafing-got to get back downstairs to wash the floor.
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Hello all hi candy
Trying to stop loafing am inspired by Chicagoan today!
Tanya
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Doing laundry today- 2 loads. And moved summer/winter clothes in closet----not too hard, not many clothes. LOL. I can do easy things like this no problem. But yesterday after the CT scan, I went to Walmart to do some shopping (household items, nothing fun) and when I got home was EXHAUSTED. Felt like every cell in my body tired. Frustrating how a Walmart trip can wear me out anymore.
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Mel, yes my day is going well. I finally got set up with a friendly visitor program. A volunteer will be talking with on Fridays at 1:00pm through Facebook video. This will be nice to have someone extra to talk to in "person' as I have missed that day to day contact. I do talk to people when out and about but it is not the same as a specific person. Glad that is starting. Also got my ticket for the Star Wars movie which I am excited about. I love those movies. All other things are going well today.
I still enjoy talking here too. You guys are my online family for sure and it is so appreciated and helps so much.
Muddling and everyone else, I keep you all in my pocket even when not being scanned. I've also brought wine in case we all run out of Mel's spiked punch.
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I did not have my CT scan today....in too much pain. Ever since the radiation therapy, my stomach has been a royal mess. I can't eat anything, and there's no relief from the pain. Not sure if the radiation killed my stomach lining or what. I called and told them there is no way I could get the barium down....it wouldn't stay down, that's for sure.
Has anyone else had this issue? Is there any remedy?
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Yet another start of treatment delay as my full spine MRI from Friday was not back for the onc to allow the goserelin injection to go ahead today. I got to hang out in a chemo chair for two hours waiting for the nurses to get to me and tell me why they couldn't give it. I understand why its important and why he needs it, but the delays delays delays are driving me up the wall. Can we just start already so I can start to feel better! Now rescheduled for next Tuesday. I felt very out of place sitting there with a full head of hair and my simple single box of injection sitting on the tray.
Chicagoan - are you going to the Ryder Cup next year? Or do you not like to watch golf as much as play it?
Mara - we are getting our tickets too, for over the Christmas period. Become a mini tradition at this point!
Boo - that is no fun and sounds miserable. I hope they sort it out soon for you.
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Booboo, I am so sorry to hear you are in such pain. Healing thoughts are coming your way.
Sondra, yes, it is a tradition for me as well. My mother and I used to attend these movies way back to the prequels sometimes with various niece and nephews in tow. Now that everyone is older, I go myself. My mother got tired of them before she passed and that is where attending movies myself really began. I always pick the same seat and get my popcorn as well. I am not fussy so provided they play the movie, I am sure I will like it. I don't critique every second of the screen like others.
I am also sorry you've been delayed again. It would be better if they schedule the appointments when they actually have the results. At least then, there would still be the wait, but you would not be stuck at the office waiting.
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BooBoo~I am so sorry youre not feeling well. Pain is so debilitating. I hope you can get a quick turn around with some major help, like now. I'm thinking of you, wanted you to know.
Sondra~I am annoyed with you that the results weren't back and you had to play waiting game. It seems like everything dealt with health or money, is just a waiting game. Sham we cant pay our bills like that. They need to read some results a hell of a lot faster. How annoying. I'm hoping that doesn't happen again to you ! 🌺
Mara~I absolutely love love movie theater popcorn! Now I'm officially hungry. Yummy!
We took my Dog into the vet today my deeohgee. My love. My pal everyday. Tag is already fading I couldn't imagine this happening to both at once. He had two huge tumors on his gums. She said it wasn't cancer and he just needs to have it cut out. So that makes me feel better. I was worried. It really doesn't look good at all.
The other not so great thing is my sister/niece isn't doing well, they think she had sepsis and mersa along with lupus. They are biopsying her kidney because of a lesion they found. Perhaps lupus. Or cancer along with everything else. She has sores from head to toe. They aren't pretty. I can't even explain how this happens to someone. No less someone in my family. So scary. She may not make it. She's 39. Life is so damn hard.
The last thing I'm dealing with is one of my sons closest friends who is a girl is pregnant, she had no idea and is a mess. We went today to learn about different options for her. She's a mess. I don't know what to say to her. She's broken. She got pregnant on the pill and she can't Even believe it. She's 22 and not ready financially to be a mother. Nor is the the father. It's so sad to see her struggle with this. I sat with her all day learning what we could at the clinic. My back feels like glass. Then we had the vet appointment. I'm going to break. Bedtime can't come soon enough. Everyday there is something else. Ive had enough in the past four years for the books, I'm Also realizing, I'mPretty strong. We all are. Yes yes we are.Much love ~M~
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Mel, I am happy to hear those tumors are not cancerous and that the vet can remove them. I am sorry to hear of the struggles of your niece. That is definitely way too many things to deal with for her. My thoughts go out to her and you. I also empathize with your son's friend. Not expecting to become pregnant when you are using birth control is overwhelming. All her options are difficult as well, whether she keeps the baby, puts it up for adoption or terminates or loses the baby. My heart goes out to her as well. That is an extremely tough situation.
Mel, I also agree we are all strong, otherwise we would not be able to face life. Some of us get our strength tested on mutliple fronts and we still come through the other side, though we cannot see our way through during the issues. I am strong, I know you are strong and all of us here are strong as well.
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morning ladies! Adderall down the hatch! Bring on the energy..... no nap yesterday. Get difficult around 3:00 ish until like 7:00. Bad time of day for me. Anyone else have a bad time of day ??
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Chicagoan~Always nice to see you. Always !!! 🌺🌺💗
Lynnwood~You ok sweetie?
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Mel, I will easily fall asleep on the couch while watching TV in the evening for sure unless I stay busy. Usually I don't even realize on time to go to bed instead. That usually leads to late nights. Mid-afternoon generally is the slump for most people. My guess is that would be the best time to take a walk if a person knew they did not want to nap at a particular time. I also think napping is fine if it does not interfere with tasks needing to be done or sleeping at night. It can be a good energy recharger sometimes.
I am pretty dopey myself this morning, up earlier than usual for my MO app't. Nothing exciting to talk about there, just updating her on SE I have been dealing with. Infusion is tomorrow but in the afternoon which I prefer. Just finished putting some makeup on and a wig so I don't resemble Uncle Fester from the Addams family.
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Mara~You could Never resemble uncle fester silly woman, you’re beautiful!! Turkey!!
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My PET was yesterday but I don't have the results yet. My labs were really good, so my MO went ahead with the chemo. Without the proof from the PET that it is working. All because of a computer change. She couldn't even access her notes. What?! The visit was a total disconnect and left me with no answers and in shock. This doctor was is my last stop. Now, my faith in faltering. Another day in the life. 💞
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Grannax~I amsorry honey that these doctors offices can't get their shit together, sometimes I think they fly by the seat of their pants. We are just the wind. I would be the nice little squeaky polite wheel to get what you want. You really don't deserve to have to wait for anything. Glad your blood work was good. That's always a sign for me too. Sending you hugs and hoping those grand children are keeping the smile on your face.
Hugs ~M~
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Just came back from my visit with MO, we discussed the incontinence issue again at length. She let me know that tomorrow I will only have Herceptin. If I don't have any incontinence, she will stop giving Perjeta and just give me Herceptin. She said that many people live on Herceptin for years and years without the Perjeta. She also said she does not want someone who does not have mets from the neck down having to deal with incontinence. This qualifies as an adverse reaction to the drug and I would be covered. I am happy and relieved. This treatment is much more gentle, losing the other drug doesn't affect my brain since these drugs don't treat the brain, just from neck down.
I am relieved to say the least.
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mara you deserve this good news!! You are a trouper and I am so glad for you.
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Mara~Well now, there is one of the breaks I was hoping for. When I said can’t some of us just get some breaks??? I’m pleased for you and agree no one should have the side effects, if there are other ways to tweak your treatment. Love that you’re being listened to. I Applaud your MO! Hugs to you!
Waving hello 👋 to Santa!!! Hello sweet one. Always nice to see you here. Hope all is good in your world. 🌺🌺🌺🌹
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Hi....I'm slowly coming back to life. I cannot describe the pain from the radiation. It is unbelievable. Like the worst stomach bug ever! But today I was able to eat a little and keep it down. So progress there....
Mara, you sweet girl. I am thrilled to hear your good news. That's why I speak up when something is not going well. Our MOs will do whatever the protocol says, but our bodies belong to us. We should be able to tell them yes, I'll try it. Or no, it is not something I have any interest in trying to tolerate. I hope going forward, Herceptin works well with none of those crazy side effects.
Mel, thank you. I love hearing from you....it's like when Mom used to kiss the sore finger. You are like a kind, gentle breeze with how you support all of us. You are a treasure. I am praying for your niece, and also for that poor girl who is pregnant. Sometimes life can take an awful turn, but good can come of it. I'm hoping that for her.
Waving hi to Santa and Grannax. Where's our Mae? Hoping she is ok.
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Oh, forgot to wave at Candy, Tanya, Chicago, and Sondra. Hope all is well, my friends.
I am so excited. Tanya and I are going to have lunch together sometime in Nov. I can't wait. To date, I have never physically met another person with MBC. And I'm longing to sit down with another sister to talk and lend support.
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Boo - glad to hear you are keeping some food down, nothing worse than not being able to eat.
Mel - every day I start to drag between 1 and 3 and usually have to have a lie down about 5 when I get home from work. But that was typical even before all this kicked off and actually I was really needing quite a bit of sleeping time in the summer between 5 and 7 that I don't need now for whatever reason. I do still try to get everything important done before 11!
Was supposed to go out to a show tonight but neither partner or I wanted to haul it over to Soho and get home late in midweek. So instead we are going to rearrange the bedroom with a new lamp (so Boy Cat can't scratch a paper lamp for attention in the mornings) and maybe get that new Nutribullet out so I can zip up something for the morning.
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Hi all, DH was in town the last couple of days, so I haven’t been online as much.
Tonight I’m going to a pot luck dinner at hosted by a member of a monthly MBC group at MD Anderson, the main is salad greens and we’re all bringing various toppings.
I couldn’t help sharing this again since uncle fester came up in the post 😆
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Thank you everyone. I love my MO, she rocks and when push comes to shove, she gets it done even when restricted. I am happy and optimistic for this cycle.
Mae, I love your Uncle Fester imitation, that is funny.
Booboo, so glad that you and Tanya are getting to meet. It would be awesome to meet people. Sometimes it would be nice to video chat somehow. Would that not be nice to say have on this site so if we needed or wanted, we could chat with each other in person. That would be so great. I know it can be done on facebook or skype, but would be nice to have a set up on BCO and then we could chat with someone.
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Mae,
I think there is a stage somewhere with your name on it. You are hilarious
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I also think of this place and all of you as my extended family and support. I could not do it without all of you being here. Yes I have the fitness thread and brain mets thread, but this is the most active and close thread. I also say many things that I would NOT say to my family. It also saves putting everything on social media. I don't tend to say much of substance on facebook because I am quite private, even from my family. You guys understand me and I can empathize with you all as well. It has also lifted a lot of the tears away as well talking everything out.
Mel, I hope things will ease up for your niece and the pregnant girl as well. My heart is going out to them as well.
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I am soooo jealous!!!!!!! 😒😏 but happy for you. BooBoo! Lucky ducks. Have a blast
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My goodness those pictures!!! A great feast of hilarity for the day. I confess to being horribly behind. Thinking of all of you everyday, but holy cow moving is crushing, which is why I am hit or miss here. Digging through old clothes--acknowledging some sizes are gone forever, digging through old files to try and reduce the paper load, finding places for everything now that it's all in one place. All on top of the insurance nightmare. It's been a madhouse and is taking a toll. However, one ray of light today. Before kiddos I served in the military. When you depart they give you a special form, which I have not found in eons, and need for the RealID crap here in the US. FOUND IT today in a nondescript file, buried with children's school paperwork. I am stunned.
Grannax. So sorry to hear about the nightmare at the office. My sister works with computers/systems and it is just stunning how complex it really is. My eyes usually glaze over about 30 seconds into her descriptions. DH practiced medicine before computers were huge and used a lot of other data, including how a patient looked physically. It's possible your physician went ahead because the labs were good and you looked good.
Mara. Wonderful to hear about the medication change.
Booboo. Thinking of you and hoping you continue to improve.
Mel. Fingers crossed for your pup!! I have been intrigued with your adderall experience. I am so exhausted all the time that it's depressing in addition to debilitating.
Waving hi to everyone! Best wishes for a wonderful day.
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well hello Mae!!! Glad to see you.... also glad DH was there. I know when my DH comes into town I get almost giddy. Hope you enjoyed your time, who needs online anyway when you're with family or living life. Good for you as always you rock!
Mara~ Youre so sweet, this thread is a close home to my heart. I've put a lot of myself into it and I care deeply about my sisters. I keep a file in my head of each of you, I rarely forget a poster. I try very hard to make it loving and welcoming, we all do it together, now this is your home. It makes me beyond happy that this is a source for my sisters. It warms my heart having you all to listen.
Muddling~ 🌺💗Movingsoccermom~Adderall has changed my days I haven't napped in three days and I am able to Sleep at night. I've been visiting people shopping, going out more. It's just opened up a source I did not have before. I don't even have to use it everyday if I don't need to. If I'm going someplace then sure. Helps with everything. Honestly. If you can give it a try. To anyone it's a game changer for me. I've been feeling so good. Kinda just makes you go go go. Which makes my depression so much less. Feel as close to normal as I have in a long time. My palliative care doctor is amazing. Thank god for good doctors that care.
Candy ~ hello darling!
Sondra. Hope you're ok! The adderall has really eliminated my down time, it's like I run out of gas and just putter out like dust. If I lay down at five I'm toast !!!
Lol at BooBoo! I agree. Like I said she rocks. 😜😜♥️
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Hi all.
Still waiting on CT results- 2 days now. Did the volunteer thing this afternoon at the food pantry.
Boo- Glad the tummy is some better.
Mel- Sorry about your dogs health issues. They are our babies.
Mara- Glad they are stopping the Perjeta. Hopefully you get to feeling better now.
Going to chill with TV tonight. Hopefully some news on CT tomorrow.
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