My Husband, My Life, My Love, My Family, My Cancer
Comments
-
Rosie- I am so sorry for your report of new lesions. Whatever the next step of treatment is may it be low in side effects and highly effective to kick it to the curb. Waiting is the worst part.
Runor- a thing in the good boob ? Was this information given to you by a doctor or a technician? I know here the technicians can't say anything. If they are checking again in 6 months then it can't be requiring immediate attention.
0 -
Runor- forgot to add about the therapist. I agree that some therapists need to see a therapist!
0 -
Rosie- I hate to hear you have had progression. Ask your MO next week about a repeat biopsy. If they can get to one of the new lesions to get a sample they can see if the ER/PR/HER2 has changed. I had a repeat biopsy this year with my progression. And they can also run the genomic testing to check for mutations. I am on Lynparza for the BRCA mutation. What day is your MO appointment? Keep us informed.
cowgal- I watched your video. I am going to try the steps tomorrow and see how that goes. I have never line danced, or danced at all.
I did not feel like doing my exercises today. The nausea from Lynparza has been better with the lowered dose, but today I had some nausea. I guess just to tell me not to get too cocky about feeling better. I don't know if it was from the Lynparza really. But did not feel like doing 30 minutes of exercises.
I will also try to post the link to the You Tube video I have been doing for my exercises. I need to see if I can copy the link. I will do that tomorrow too.
0 -
Runor, ugh! Why wait six months if they see something? Can’t they do an MRI just to be sure? Or maybe three months instead of six
0 -
Rosie~ sending hugs. Big hugs……. I am hoping the next course of action will be effective. Damn cancer.
Runor~ don't accept that. That's what they told me ! No way! Look at it now people. Dumb doctors sometimes. Good grief.
I am thinking of you all and hoping each and everyone of you can find strength when needed. I know I need help with that. This therapist better be a magician!!!!
Love to all.
Thank you BooBoo!!! Love ya girl.
0 -
Rosie, I am sorry to hear this report for you and may this week go quickly so you can find out the next steps in the game plan. Healing hugs from here.
0 -
Rosie,sorry you got this bad news, hopefully the next treatment will knock it back down.
Runor, I agree with what's been said here, 6 months is too long to wait.
Well it's already Friday here, chemo in 2hrs then off to Friday night bingo, take care everyone 😘
0 -
Rosie, sorry to hear about your disappointing news. Hope your next treatment line kicks it in quickly.
runor, the follow up stuff is annoying; you probably already know this but 6 month re-checks are the common way to approach something that is very small &/or not particularly suspicious. If you're especially concerned I'd suggest getting a copy of the actual rads report & seeing what they're looking at & then discussing with your family dr.
0 -
Rosie, bummer news about your progression. I hope your next treatment is easy and effective.
Runor - ugg. Six months is a long time to worry over something. I like moth's advice to read the actual report.
0 -
Rosie,
So sorry about progression. Hopefully, it’s manageable with all of the options we have. I have had so many tests come back with the same thing, only to have the next one show nothing at all. Like gone. The only big pain is starting a new treatment and trying to find your comfort zone (yeah, right). Oh what we go through. Most people are worried about what to have for dinner tonight or whose turn it is to take out the trash. We are stuck trying to navigate a way to stay alive. Whew. Anyway, try to think positive thoughts,and we’ll be right there with you no matter what your next steps are.
0 -
So true Booboo. My texting buddy I mention on here is seeing a vascular doc next week for a consult. He has issues with swollen legs. He had an ultrasound this week and was telling me the results posted on the patient portal. Sounds totally normal. He will see the doc next week to discuss, but he is worried he will have to wear compression socks. OH MY !!!! He wore them before and hated them. Good grief. He is telling me this and I am just thinking "man you really do not have big issues, suck it up". I am thinking those thoughts more and more these days. And my tolerance is wearing thin with people.
0 -
Thank you Booboo, that's so true that people worry about such different things. (Today I heard someone complaining their health is a mess because they have a bad knee and cataracts.) Thanks for your calm words and reassurance. I do hope I can handle whatever treatment is next. And I hope you're doing ok. I don't remember seeing an update from you for a while.
Candy, just saw your post. So sad, compression socks. And btw, my MO appt is Tues next week, I forgot to respond to your question.
0 -
When I was a teenager my mom put a small poster on the wall in my room. When my daughter was growing up I repeated it to her. " I had no shoes and complained until I met a man who had no feet"
If only people realized how much more other people are worse off than they are. My lovely older neighbor who is 86 always complains how it sucks to be old. At times I just want to say how lucky she is that she gets to live to be that age.
Booboo- are you heading to Disney like you planned?
0 -
IT was my regular doc who informed that there was a 'thing' they wanted to re-visit in 6 months. Beyond that he said nothing. So yes, when I lay my own eyes on the actual report I will have a better idea. I will give it some time to show up in my health portal and if it doesn't will get a copy from doc. Am I worried? Not too much. That might change when I read the report for myself. Or not. But since no one rushed in and jabbed a needle in my boob I am assuming the birads 3 is more to keep me in the system, cautiously, than to be alarmist. But again.... will have to read the report myself and see how I feel.
Rosie, sending strength to you. The courage it takes to keep putting one foot in front of the other is huge. Hugs.0 -
Gosh, I wish compression socks were my biggest problem I face.
Rosie, still sending you strength and thinking of you.
Did not do too much today, mostly watched TV. I just finished an old childhood favourite that was on youtube. Abbott and Costello's Jack and the Beanstalk. Such a corny but funny movie. We always watched Abbott and Costello on TV, usually on the weekends as well. I bumped into it while browsing youtube.
0 -
Hi Kris, Ithink I may have some neuropathy in my feet. It doesn’t,t hurt while walking, it starts when I go to bed the tingling plus I have a bunion and a hammer toe in 2nd toe. I haven’t mentioned it Tod doc cause I wasn’t sure if that’s what it is. I,lol mention it when I see him. dec 21. I haven’t had chemo since Oct.
I had an emotional day today missing my son and all the other feelings get stirred up life can be unfair and difficult. You ladies are encouraging. is anyone else dealing. Withh grief over losing a loved one this year while diagnosed with MBC?been a tough year. Keep on keeping on, Be
0 -
OhioNana, I'm so sorry about your son. I imagine holidays especially are difficult. I hope you have lots of loved ones around.
I'm sorry so many of you are dealing with so much. It has absolutely been a rough year.
I lost 4 aunts/uncles and a cousin within a couple of months (not covid related) at the same time that I was diagnosed.
0 -
Ohio~welcome to my second home…. Not this year no. But two years ago my father passed away. It always hits me during The holidays. I’m do very sorry that you are grieving, it breaks my heart. I know the heavyness of the feeling. We have to keep rolling along. We have no choice. Sending you loads of hugs and support. Because we get it. 💐.
0 -
Living,
Yes, we are going to Disney next week, and I am so excited. (Bucket list item!). I rented an electric cart to get around because I know I'd never be able to do that kind of walking. I saw that the weather is in the 80s next week, so I'm a bit concerned about that. (We picked Dec. to go thinking it would be nice and cool. Oh well, best laid plans…). Hoping it will be a good time.
As far as an update on my health, I'm still with my palliative care group who makes sure I am doing what I should with taking meds, etc. I still go to the infusion center to get my Xgeva shot once a month, but that's it. I am back to eating real meals although I only eat half of what I used to. So weight is down. The tumor in my stomach does not appear to be growing, so I'm trying to decide next steps, if any, I can do. May try radiation to see if that would zap it. Anyway, I'm just trying to live my best life while I can. Thank for asking.
0 -
Has anyone here been affected by the tornados across the midwest last night? The news is awful and my heart goes out to all those families who are struggling today. The damage and loss of life is difficult to imagine.
Jane
0 -
I am 80 miles from the Edwardsville, IL tornado area and 125 miles from the Mayfield, Kentucky area. But all is ok here. Edwardsville is northwest of me and Mayfield is south, so I guess I was in the middle, and no tornados here. So sad. Heard on the news that a small town in Kentucky east of Mayfield was wiped off the map. Guess that tornado was on the ground for 200 miles. The Tri-State Tornado of 1925 went thru a town in Southern Illinois that is 35 miles from my town. They say this Kentucky tornado will rival the 1925 one-- in miles on the ground and the death toll.
0 -
those poor families and animals. Shocking weather you never get used to. So terrifying. I’m thinking of them. Glad you’re ok Candy
0 -
I can't imagine the devastation of a tornado. That's one weather event we don't have to deal with here. Although one time something like that did touch down and caused one hell of a mess. But still, a baby tornado by comparison. Prayers and sadness to all affected.
Venting.
Have Aunt. She is in her mid 80s. For long time now been having health problems. Losing her mobility. While cognizant, it's like she reacts to everything as if she is moving through wet concrete mentally. Stares off into the distance. Needed help dressing but was able to walk with aid of a walker. Has the WORST swelling in her legs I have ever seen and has had for at least 30 years if not more. She got covid. Her ancient husband got covid. They both landed in hospital. While there her decline was rapid and extreme. Neither required ventilating but both were very dehydrated and needed IV fluids. But being in bed or for other reasons, Auntie has stopped moving. Cannot physically move herself at all. Not eating. No bowel movements. In constant pain. Hospital sends her home into the care of her frail, inept husband who has never spent a day caring for anyone in his life. So he calls her sisters (my mom being one of them) to come to the house and stay overnight and help Aunt on and off toilet, getting dressed, moving around house etc.
Reports are coming that Aunty is awake all night, in pain, wants to be moved every 15 minutes. Can't get comfortable, can't settle, everything hurts all the time. Her sisters are there in shifts, all of them in their 80s too! THEY ARE NOT EQUIPPED to deal with this! They are themselves frail, little old ladies lugging around my immobile Aunt, feeding her, toileting her, moving her, cleaning the house, looking after frail Uncle.
So this is my rant. She is in PAIN. She is in a state of continuous mental misery. Caring for her and making her happy and comfortable is not possible. She has been prescribed NOTHING for pain aside from a fucking Tylenol every few hours. I had a talk with my own mom tonight and told her that should she ever get in that state, in pain, suffering, immobile, constantly unhappy, I would insist that the doctor medicate her into blissful ignorance or I would procure enough street drugs to make her not give a shit about anything anymore. I absolutely do not understand why the last weeks or months of someone's life has to be spent in emotional and physical anguish when doctors have the means to change that! This hoity-toity desire to not get anyone addicted to opioids is just a lot of obscene, backhanded cruelty and viciousness when withholding them is not merciful nor wise. She needs to be in a facility where people can attend to her needs and she needs a medical team who are dealing with both her physical and mental suffering. Instead my old mom is going to go over there and I have visions of both of them on the floor of the bathroom in a real pickle! And no, I am NOT stepping into this. Aunty has 4 kids and they bloody well need to get real and abrupt with whoever they need to rattle chains with. I heard that the hospital was being 'difficult' in releasing Aunty and now I know why! She does not have the proper support system in place for her to comfortably and safely be at home. Family seems to think getting home care a few hours a day will suffice. Uh - no - she needs round the clock attendance. This is nuts. God I hope I am never this nuts. Am I seeing this wrong?0 -
Runor~ I. Completely agree with you. It happened with my dad and before I stepped in they were only
Using a few hours a day nurse for my father. Someday he would sit soiled until someone came home from work. Could have been hours for all I knew at the time. When I got involved and noticed what was going on , I knew it was a fall hazard, which clearly this is for your aunt. No one should have to be in constant pain like that. I would be the queen bee in the bonnet . I got my father moved into a home after he did indeed fall and a family meeting was called because he was deemed not allowed to be alone anymore. He also smoked. Your aunt needs to be watched round the clock. What the hell is wrong with people. I feel badly for your aunts. It's hard work. I used to go over for a few hours every other day and I saw what it took for those nurses. I did his laundry.There is no way your mom and her sisters can hack all of that. I honestly hope she gets the helps they need. I'm. Very sorry. Sometimes they feel like there is no other way. There has to be an older folks home in the vicinity. Nothing is easy. Apparently especially growing older. Poor fragile uncle. He's probably like wtf???
0 -
runor, I'm with you. It sounds like she needs round the clock professional care. It's heartbreaking. No one should be in pain like that with no relief. Oncologists seem to have figured out that pain control is more important than the worry about addiction for cancer patients. It sounds like other doctors need to get there for elderly patients too.
0 -
Big sympathies for those impacted by tornadoes, I would not want to experience one that closely. I did, however, have a plan that if I had married my boyfriend (before I met DH), that we would go tornado chasing for our honeymoon, I’m kind of a weather junkie.
DH and I visited the hospitalized friend in his new rehab location and he’s doing great. Only mild issues from thought to speech and weakness in his knees but he’s nearly recovered and may be discharged next Friday.
We’ll be spending the holiday in Houston, then heading back to the mountain in early January to get some renovations done and begin my Herceptin treatments in El Paso. MDA is switching to a bio similar medication and since the last one caused me trouble, I’m trying to avoid another one.
I hope everyone has a nice, relaxing weekend.
0 -
Runor, I agree with you and others, she needs 24/7 care from professionals, her husband sounds like he cannot do it. Your Mom will wear herself out and honestly needs to put herself first to make sure she does not wind up causing herself an issue. I also agree that Tylenol does not get rid of all pain.
0 -
Runor,
Where are the 4 kids? Uh, like get your butt here and deal with your own Mother. It's their responsibility. It sounds like they are going to let her sisters (and your Mother) take care of things, which is so unfair.
Does your healthcare system have a way to enroll your Aunt into a palliative care or hospice facility? That's who has access to the drugs in the US. And I agree that it is totally wrong that she should be suffering in pain. I hope this gets the attention and resolution that your poor Aunt deserves.
0 -
runor- I too agree that your aunt needs to be in a long term facility/nursing home. The family-- all the kids --- need to talk and figure this out. Maybe she can be admitted under Hospice. Hospice is more than just for a cancer diagnosis. My mom was on Hospice for congestive heart failure. Then if she is on Hospice maybe she can get the pain meds she needs. And the around the clock care she needs.
Well my "texting buddy" went to the Retirement Party yesterday for my retiring Pastor. He took a couple of pics and sent them to me. Not a mask in the place. It was in the Fellowship Hall and tables set up for snacks- cake and coffee. There were people sitting around the tables-- not social distancing-- with cups and dessert plates beside them. No masks. People leaning against the kitchen walls talking. No masks. I feel like I am living in a different world from everyone else. I isolate. I mask. I worry-- not just about Covid, but colds/flus/wintertime illnesses. I have to. I don't want to be sick. I don't want to pause my cancer meds if I would get sick. I certainly do not want Covid-- even a light case since I am vaccinated. What a difference from my pre-cancer days and now. I would have been right there with them back then. Now, I isolate.
Pocket duty list for week of Dec 13---
Rosie- MO appointment Tues (discuss liver progression on scans)
Sunshine99- Scans Wed
Mae- Brain MRI Thurs, results Fri
0 -
runor, I'm so sorry. This totally sucks!
To those in tornado areas - wow! I can't even begin to imagine.
Cancy, thank you for remembering. Am having the usual scanxiety. Have been having more pain in both of my hips now. Would love to have it "just" be arthritis.
Don't even get me started on the masks - especially with "church people". Our pastor asked my DH to speak next weekend at church. There is a group who sits in the front (after leading the worship songs) who REFUSE TO WEAR MASKS!!! DH isn't going to speak. EVERY SINGLE WEEK, these people are asked to wear masks, and every single week, they don't. This is about "loving your neighbor" and not politics, but they're still refusing. So very sad...
On a brighter side, every year for the past 20 years, up until COVID, my husband and I have hosted a holiday party at our house for our neighbors and friends. Last year we didn't and decided that we would probably not continue the tradition - mostly due to my immunity and fatigue issues. Well, two of our neighbors have taken up the task of hosting the party. They're calling it my DH's and my party, but it's at their house.
I'm so unbelievably touched that they would do this. The party has always been our highlight of the year. We plan for it all year, look forward to it all year, and bask in the afterglow for weeks after the party. We have the best neighbors ever! I can't wait to see everyone this afternoon. It will be outside (ours was about 100 people crammed inside our little house), and we will feel perfectly safe.
0
