My Husband, My Life, My Love, My Family, My Cancer
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I talked to my friend this morning. Her husband is hanging on--still unconscious. They are being discharged home with hospice today-- getting hospital bed delivered this morning. She seems to be holding up pretty good. She cat napped in his hospital room last night. And ate a sandwich. I wish I could be with her when she gets settled at home. She said she knows people will want to help, but she does not want a "revolving door" due to Covid. She is unsure how she will handle that so she does not offend.
I am getting my repeat CBC/ANC check today. Hope better and I can restart Ibrance.
Supposed to get a dusting of snow later today/tonight.
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Karen~I’m sorry to read your posting about progression. I hate cancer so much.
Hello to everyone else, candy I’m very sorry. Mae~ yum yum! I’m trying to keep myself calm. I have scanning in March.. so of course why not worry about it now? But I’m doing okay. Thinking of you all
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SeeQ, DH loves Mexican food but he’s camping with a couple friends, so I used the opportunity to pig out on my own and I’m loving it, lol
Karen, I’m sorry to hear about your progression and trouble breathing is very scary. As for Xeloda, while side effects can be tough, especially at first, I found that once I had a good routine down for meds to manage my digestive SE’s and nightly lotion of hands and feet, I feel really good and currently have zero complaints. Hopefully, I’m not just a lucky case and everyone can find their balance fairly quickly.
Brain MRI follow up changed from in person to a phone call in about an hour but the nurse who called to let me know said it was stable, which works for me 🎉😁
Might do some packing and general chores since my day is free now or I might just watch mysteries, haven’t decided yet.
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oh Karen, sucks about the progression but good that you have a quick plan. I hope everything will go smoothly.
Illimae, yay on stable!!
I'm still feeling ok after chemo yesterday. I was tired last night though and went to bed early, hoping for a lovely long sleep but olive woke me at 2 and I was up with her till 330. Took her to the garden, then eventually leashed up and went for a walk and still she was off. She seemed nasueus but never barfed, just couldn't settle. Poor girl. Poor me lol
Hugs
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Mae- Woohoo for stable!!!!
moth- Sorry both you and Olive had a restless night. Rest today if you can.
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I have an appointment for my Covid vaccine. Opportunity thru a place I volunteered with (volunteered before Covid, and will resume someday after Covid). I messaged my MO and she said ok to proceed. I have to hold Ibrance 1 week before and 1 week after the vaccine. For both doses of the vaccine. I will still isolate even after the vaccine, as there are variants around that the vaccine might not cover. And with my immunocompromised status, I might not have the 95% efficiency of the vaccine. I will still wear masks. I will probably hold off in-person church until summer when less colds/ flu and more people vaccinated. But, the vaccine is supposed to be effective against having serious cases of the virus. So maybe it would not be deadly if I get it. I hope I am making the right decision. I will be off Ibrance more than on, for the next couple of months. But I am still on Lupron and Letrozole. So some coverage against the cancer.
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congrats Mae!!!!!
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I know this thread has been going for awhile. I just read the original post and I feel it so deeply. I found out in October that the beast is back and I struggle daily with the idea that I wont be here with my loved ones. I'm guessing with time it will get easier in some way, but it is raw still especially at night.
Thanks for sharing your heart.
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Dear TangandChris,
Yes, initially, it is a bit overwhelming, but as you go through your instructions and treatment with your MO, it helps to be in a routine and becomes easier. I can so remember my first days when diagnosed. All I thought about was “when am I going to die”. This too shall pass. Just stick around here with us. You will not only learn a lot, but we can often help with questions you have. But most importantly, this thread is all about listening toeach other, supporting each other through scans and other procedures, and just being here to lighten your load as a newly diagnosed cancer patient.
Hope you stop by often and share your experiences with us.
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Tang~Welcome to our thread. I feel it deeply too it’s a daily struggle to be us,sometimes. Thank you for sharing your feelings here with us. It means a lot.
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Great news Mae...it’s also great to hear you enjoying your food after all those weeks of not!
Candy good for you on sorting out the vaccine. I know some are sceptical and that’s their right, but frankly we get pumped with so much stuff, this is just another thing in my head...and it might give us some freedom and a wee bit of confidence.
Sondra mentioned on another thread something about another single dose vaccine ( Janssen??) about to be approved.Tang... welcome
Mel.... just sending you a great big hug.
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Karen~thank you sweet woman. Sending a big hug right. Back to you as well. Thank you..
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So, DH is having a brain MRI on Tuesday to rule out anything serious. The neurologist we met with believes his issues are most likely related to stress and poor sleep.
He seemed concerned about the MRI, so we discussed it and he said “I’m just not comfortable with chemicals being injected into me”, I spontaneously burst out laughing, then apologized and he understood why. Obviously, I meant no disrespect but the clinical innocence just got me. Ahh, the good old days before we inject or swallow who know what all the time.
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Karen - I'm so sorry to hear that news. My hope is that the weekend goes quickly and easily for you and that your stay in the hospital is brief. I pray the Xeloda is a better and more effective treatment for you.
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Karen - that's disappointing news, too say the least. Hopefully, they can make you more comfortable right now, and the Xeloda will push it back.
Candy - Good news about the vaccine. I hope, as time goes by and more and more people are vaccinated, we can all feel safe(r) in public. I have no idea when I'll be eligible in my state. A single dose vaccine would be great if it's equally effective.
Mae - First your story about 'chemicals being injected into me" is hilarious. He must be tired. lol. I hope he could laugh with you afterwards. In all seriousness, I hope his scans are clear. It may be time for him to focus on self-care a little more. Second, I thought you were on a 'food holiday' - which is what I often do when dh is away. I eat things that I love that he either cannot eat, or does not care to. Last, but not least, hurray! for your stable scan.
Tang - welcome
I had bloodwork today so my MO will have my TMs for my appointment next week. If everything looks good, we're going to slow my appointment schedule to alternate between checking TMs and an MO appointment every other month, and hold off on my next scan until 6 months, ideally. Practically speaking, it makes sense - it's not liike walking into the MO's office keeps me stable - but there's still part of me that worries about it. I got to have lunch and dinner with my ds, so it's been a good day, all in all.
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Thank you for the welcome!
I hope I can keep up. I will try to go back and read to get to know y'all.
I'm having a tough time today with this MBC crap. I got the call to schedule my first PET since starting treatment and started feeling instantly panicked. It's on the 25th so I have pulled myself together lol.
But, my birthday is Monday and I just have all kinds of mixed feelings. Between Covid and cancer there won't be the normal family gathering for it.
I guess I'm feeling depressed. I hate to admit it, but there it is.
Tomorrow is a new day and hoping for new mercies.
((Hugs))
Edited to add more complaining
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Hi everyone, I've just been resting up while waiting for the call to have my port inserted.
Candy, I'm so sorry to hear about your friends dh, I hope they can keep him comfortable, its so hard when we can't give the support we usually give but I'm sure your friend knows you'd be there in a heartbeat if you could. Good to hear you will be getting your vaccine, we don't start vaccinating here until February at the earliest.
Karen, I hope they get you breathing better on Monday, I know what it's like not to be able to get enough air, it's very distressing.
Welcome Tang, and here's wishing you the best birthday on Monday.
Mae, congrats on stable and I hope dh's MRI goes well on Tuesday.
Wishing everyone else a peaceful weekend, take care, Cathie xx.
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Mae - great news about MRI results. Almost spit out my coffee this morning when I read your hubs response to his MRI.
Welcome Tang. Mel set up a great living room for us!
Hugs to all
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Tangandchris, happy birthday Monday 🎉
Mixed feelings about birthdays or anything really when your recently diagnosed is totally understandable. I thought the 1st since cancer might just be my last but after being in treatment for a while, I realized it wasn’t the immediate death sentence, I thought it was. Now I not only celebrate my birthday but I’ve added a 1/2 birthday at the 6 month mark.
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Tang~It does take time to digest an MBC diagnosis. I don't think Ive still accepted it. I've always been a force to reckon with. But that is no longer the case. The steam is out of the pot. In two weeks it will be five years for me since diagnosis Jan 22,2016. That dreadful phone call, and it came so fast I knew. Barely two days. But I've been lucky to get on-a. Good regimen and have been nead for the majority of that time. So it's all individual in our treatments. Take it day by day. It's all we can do.
Edited; I agree with Mae completely. I use half year marks myself lol all the time. It’s. A big deal. 6 months.
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Tang, welcome and sorry. I'm fairly new (less than a year) into my mets diagnosis. I remember reading my reports over and over again and not believing I was seeing the word "metastatic". Wait, WHAT??? Who, ME???
Then when I met with the radiation oncologist, and heard his nurse use the word "palliative" radiation, I freaked out a little. Isn't "palliative" like "hospice"? NOPE! Palliative just refers to helping with the symptoms, in my case pain. The palliative radiation to my hip, femur and spine significantly reduced my pain. So, don't let that word scare you.
Let us know how you are doing. I do hope you have a very happy birthday!
Carol
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Karen, I’m in your pocket for your hospitalization on Monday. I hope the draining is tolerable and that your new med will work hard against any new mets. 🌺
TangandChris, I hope you can gradually adjust to your new dx. I too felt doomed early on, but with a few encouraging scans after starting treatment my outlook changed quite a bit. What treatment are you on now? Please check in here whenever you feel like it. Mel’s living room is a comfy and supportive place.
Mae, Yay for the stable scan! It’s so true we don’t even think twice about all the drugs and treatments anymore. My DH had a kidney stone (that became inactive for a few months) a while back and his doc warned him that one ct is equal to 12 X-rays, so getting a ct to check on it wasn’t without risk. Hah. Then there’s me (and lots of us) getting CTs every 3-4 months and radiation for 25 days after lumpectomy. Yeah, we just do whatever might be useful in holding cancer back. Hope your DH does ok with the mri, and there’s nothing to report. Innocence is a good word btw. Fajitas sound awesome.
Hello to everyone. Have a calm Saturday. Laundry is my agenda item for the day, maybe some closet organizing. We’ll see
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You’re all such kind, sweet, loving ladies.
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Welcome tangandchris. It is weird what we get used to. I have been doing this dance with MBC for over 3 years now. It is tiring. The "maintenance" of it-- labs, shots, doc visits, scans. But you get in a rhythm. It is a struggle though. And we all get depressed--- I know I do. Visit us often here. We truly "get it" here.
Mae- Pocket duty for DH MRI. Does he know we do "pocket duty"? Something else for him to realize we do.
Kittykat- Good to hear from you !!!!
Today is laundry, balance checkbook, answer a couple of emails. Not much going on. I will call my friend later and see how she is doing.
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Tang, sorry that you are so new to MBC, I must for me that was the worst time with all the fear and sadness I was feeling. I was stage 4 from t he start with some cancer cells in my brain that did not form a tumour until a year after I was diagnosed. I am going into my 7th year if you start counting from 2015. I am largely used to it all now and am glad to be stable but I do know it can change. Now that I have some distance, I am no longer fearful. That would change with any new developments. I will say that regular life makes me more anxious than my own cancer. I am realistic about it but don't largely think about it. That is just me, I had social workers, a nurse who came in after my Mom died of lung cancer and I could have family help if I would ask for it. I also have a friend I speak to by phone. I am not even that worried about covid, just follow any rules put out and that is about it.
Mae pocket duty for your husband as well.
Karen, I am sorry to hear about the progression and fluid in your lung. Hoping draining will provide relief for breathing.
Anyone struggling, I think of you all. I missed a few people I know but I do care for you all.
I did not do anything much today, went to pick up groceries by foot and also walked a bit on my treadmill. Got home and did not pay attention to where I was and tripped over my cubii. I was unhurt except for what I know will be a nasty bruise. I did cause pain but is fine now. It took me a minute to figure out getting up. Used my yoga mat. Had to scooch over on my butt and then put the mat in front of the chair I needed to brace myself on to get up. Got up, did a few self pity tears and am OK now. Been a while since I tripped over anything so have been lucky thus far.
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Tang - my first birthday after diagnosis was last May and I spent the whole day crying in bed. It was awful but I just couldn't get it together - I hadn't cried that hard since I was first diagnosed (8 months before), though I haven't cried like that since. Frustrated mostly that due to dumb Covid I couldn't even have a nice birthday (normally we go on a trip somewhere) and even a restaurant or a bar for a drink was out of the question because everything was still locked up. Ive never been a big fan of birthdays but still, damnit - SOMETHING different would have been good, of all birthdays. So its ok if you are bummed, its a lot to process.
And Rosie (and the others!) are right - once you get in the swing of things, start feeling better, see evidence the treatments are working, the fear and sadness fade into the background most of the time.
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Many of you know me and I know many of you. I posted on this thread a few times a long time ago. I read it all the time when I put it in my favorites. I put it in favorites and take it out from time to time. I don't really know why. I'm keeping it in favorites now because you guys talk about things other than cancer. Like laundry. You guys do a lot of laundry. I finally figured out why that is. You guys spend a lot of time in each others' pockets. Pockets must be clean to have company.
I probably won't post much. I don't post much anywhere anymore. Most people don't appreciate my attitude which is snarky, sarcastic, and cynical. I am totally done with medical providers who mostly live in the 1800's when they used to tell women that their ailments were "all in their heads." They just have different ways of expressing it now like, "anticipatory side effects" and "anxiety." This happens to be my pet peeve right now. I'll move on to something else that annoys me soon. I just wanted to tell you about my laundry revelation.
I'm thinking about my Scotish friend, Karen, a lot. My Faslodex (with Ibrance for me) experiment may end soon, too. Xeloda hovers. My big question about Xeloda is that you take no estrogen suppression with it. Why is it that for YEARS we have worried about estrogen and possibly progesterone levels and with Xeloda, it's like, "who cares about that silly hormone(s)." What happened? I am confused. I pretty much stay confused and ask silly questions and with no answers, I stay angry when I think about my medical situation. As the years go by (7 so far), I'm getting really good at NOT thinking about that. That's the trick, I find. Difficult but doable. For your new person, that's the trick. Not so doable when you are new. But I decided to not let cancer steal my time. I spent so much time worrying at the beginning and most of that time was wasted. I always say, I wish I had that time back.
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we like snarky
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Thank you again for the welcome!!
I love snarky too tee-hee
My husband, 11 year old daughter and I went out for a nice walk earlier. It was really nice to go out and be together as a family.
Now we are getting ready to hunker down for some playoff football.
You all are so uplifting. ❤
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I know you do, Mel. I just find myself self-censoring my posts to make sure they are "nice." I find many BCO people are "too nice" and I rub them the wrong way. It makes me stay quiet. Better for me. Better for you. I can hear the sighs of relief.
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