Nov 6, 2019 11:14AM mara51506 wrote:
Philly, fingers crossed no ONJ. Dental problems are a problem for sure. Positive thoughts for you, in your pocket when you visit your dentist.
Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.
Posted on: Jul 6, 2017 08:38PM - edited Oct 28, 2019 12:42PM by Micmel
As I go through this forced path I have been thrown down, I have come to realize the love I have always had for my husband was strong. He is amazing and I love him with my very soul and entire heart. Never would I ever imagine the thought of dying and him being alone. Then the worst part hit me!! I can't seem to shake the horrible sorrow of thinking of another woman taking my place in his life and his heart, and if I Am honest his bed. He is my best friend and the love of my life, I would never need another for any reason. He makes my life complete, and then this happens. How do I process that I most likely won't be the one growing old on the porch that we have talked about, how do I process, someone else sitting in that chair? I hate this trajectory path I've been spun onto, and everyday I feel grief and deep sorrow. How do I live everyday knowing in the back of my mind, I feel like a place holder, for another woman who will be stepping into my life when I die of this horrible disease, more sooner than later. Why would I even want to take any medicines or treatments, when the answer is pretty obviously in front of my face.? Why do we fight so hard for something we cannot control ? Why do we hurt so badly thinking about letting go, or giving up? It's a four letter word that holds so much power. That word is LOVE..... If you have ever felt this way. Share with me, because I understand, I feel this way everyday. I also don't know what to do with the sadness of loss or how to process the process of dying. However slow or fast it may be. Please share your love stories with me, how did you meet? How long together? I want to know your stories, everyone has their person. Everyone loves.....tell me about your family, your friends, your life too, as if this was your living room. ♥️
We are team FU cancer (Named by Parry, our sweet sister) and this is our Lol pub and living room. Welcome, put your feet up and just be you!
Posts 11791 - 11820 (11,992 total)
Nov 6, 2019 11:14AM mara51506 wrote:
Philly, fingers crossed no ONJ. Dental problems are a problem for sure. Positive thoughts for you, in your pocket when you visit your dentist.
Nov 6, 2019 11:40AM LoveFromPhilly wrote:
thank you Mara! 🙏🏾🙏🏾
Nov 6, 2019 11:57AM mara51506 wrote:
You are very welcome.
I have now used the dryer I set up yesterday. I absolutely love it. Makes up for the hard time setting it up. I now have full laundry facilities at my place. Very happy today. I have also been walking to songs today. Listen to a song, take a break. Feels good.
Nov 6, 2019 12:03PM LoveFromPhilly wrote:
Oh that sounds so lovely Mara! Enjoy!!
I am working non-stop for the next 6ish days...I usually only work 3-4 days a week, but this time of the year people are booking out like crazy for appointments. I will confide into you all that as much as I love what I do, I really just want to curl up into a ball and read a good book right now.
Nov 6, 2019 12:08PM mara51506 wrote:
I can understand that Philly. You have a busy life and a disease you manage. It is a lot to deal with.
I do sometimes wish I was able to work but with all that has happened, it is not in the cards. My brain was changed from the whole brain radiation and my frustration level which was never good would not be able to withstand. I can live with that. Gradually starting to think about where I might like to volunteer but even that is further away until digestion is better controlled
Nov 6, 2019 12:35PM - edited Nov 6, 2019 12:36PM by Simone80
Hi Micmel and everyone. Micmel, thanks for the roll call. I haven't been posting too much lately but have been trying to keep up with reading everyone's posts. I've been struggling with sinus and teeth issues. I am on antibiotics right now. The dentist is talking about me needing a root canal but wants to wait for the infection to clear up. I am so worried about having\getting ONJ.
Nov 6, 2019 01:00PM Moomala wrote:
Lynnwood my back is so awful right now too. I know I have cancer there in the lumbar spine but my bony cancer doesn't really hurt. I'm having MRI Friday . The trajectory of your pain description is just like mine. Shoots right across my butt and down my leg. Advil is helping me for now plus I do about an hour of PT exercises each day designed for my situation after my back went out just like yours last year. I could hardly get in and out of my own bed the pain was so bad. It resolved really well over the summer but it's back. Last year's MRI showed some bulging discs but ortho/neuro guy wants a follow up now. I have these blasted compression fractures that just vex me. I'm recovered from this for the most part but they really left a lot of damage in my back. SondraF is out there somewhere with back pain that had her immobile last weekend. It sucks!!! I'm very very sorry about your friend.
You guys with your teeth....ack!!! I have a few friends here who have had similar issues leading to long-lasting infections and things and they all had to stop Xgeva/Zometa. I've always had so many tooth issues I'm just expecting it at this point.
It's a sunny day here. We're expecting snow tomorrow. Then my mother comes to town and I'm expecting a very stormy family weekend. She is 91, does not get along with a few family members and has no filter. So things are going to be interesting. But I will get a visit with my grand-girls which always makes me happy happy! I'll just stay away from the fray and focus on that!
Nov 6, 2019 03:02PM mara51506 wrote:
Moomala, enjoy your grand girls, hopefully your mom will be able to have a nice visit. No filter is definitely a challenge in families.
Nov 6, 2019 03:37PM SondraF wrote:
I'm STILL immobile - I haven't made it down the stairs yet and it will be a week tomorrow midday since I came home early in pain from work. I can get in and out of bed, and to and from office chair and the bathroom and that is it. The painkiller regimen the chemo nurse sorted me out with keeps it tolerable (slow release morphine, advil and paracetemol) but this isn't really living right now. Just starting to get some slight sciatica on the outside of the right shin which is only when I shift in the wrong direction. I know its bad to be immobile too much but I dont know what else to do - I try to get up and sit a bit and 'walk' around now and then. My core is getting a mad workout at least.
Tomorrow I call the oncology nurse again and ask about next steps with this - Im 9 days out from that first goserelin shot and now getting more than a little nervous about starting the next drugs if the joint pain is supposed to be worse. My MRI scan in 16 showed L4/L5 as an area of concern (and where I also have mets apparently) which is probably partly the culprit, along with that sacroilliac joint. If I move in the exact twisting motion that precipitated all this, that is the max pain, but then I can also get stabbing hip pains too.
I did relate to partner this evening that while it seemed like forever for the disk to resolve in 2016 it really was only a few (acute) weeks in the grand scheme of things. Other than the back problems I feel more or less fine (other than some fatigue) - cheery, sleeping well, etc. and no pains in places like my wrists and my left knee where I would expect joint pain to show up.
I actually dreamt of a walk-in shower this afternoon. How sad is that? We can't move until February at the earliest either.
Nov 6, 2019 05:07PM Micmel wrote:
Mara~Glad youre Lovin your new set up.way to make it happen!
Simone ~ I get the sinus issues with Ibrance all of the time. Everything turns into it. I hope the antibiotics kick in. Sometimes it took a few rounds.
Moomala~ I’m sorry your having issues with your back also. Seems to be going around. It’s definitely something that makes you stop in your tracks. I hope you feel better soon. My biggest gripe is an annoying rib/lung pain that has inhabited my right side this past week. Maybe I sneezed or coughed to hard. This happens to me sometimes. But the constant worry is for the birds. grandchildren light up any day! 😁
Philly~Hope you get through your incredibly busy sounding day! Tired is my middle name anymore I’m so sick of being sick and tired of being tired. But we move forward
Muddling~if youre reading ♥️♥️♥️
BooBoo~feeling better I hope! Please please.
Tanya~Hi sweet woman. How are you today ?
Sondra~I also have sciatica issues and yowl! That hurts.... I only move around when I have too and sometimes that involves binge watching and napping, but I am an achey 90’year old when I first start to move. It’s actually painful. But the more I walk the better my feet feel. I’ve gained weight because of some meds and I notice that had played a part in my issues. I don’t even have to eat, just gain. So annoying... I hope that you can make it downstairs tomorrow..
Nov 6, 2019 10:45PM Mominator wrote:
Thank you for the kind welcome. I will drop in when I can.
Love and prayers to all of you. Special love to Muddling.
Nov 7, 2019 12:40AM runor wrote:
I'm here Micmel. Following along.
Nov 7, 2019 02:01AM santabarbarian wrote:
moomala that sounds like sciatica.... sciatic nerve
Nov 7, 2019 02:57PM candy-678 wrote:
Well I am doing the volunteer church secretary thing every morning this week (except Tues due to waiting for plumber). Going ok. The regular secretary did so many behind-the-scenes things that we never knew. So I am just keeping things going until she can get back.
Yesterday afternoon, after getting home from the church, I was ironing new curtains that I bought--out of box crumpled. The fatigue hit. Turned off iron and just laid down. I hate that feeling. Just hits and have to stop and rest.
Saturday is the PET scan. MO appt not till the 25th. So will see if progression of liver met and change in treatment, or keep things the same for now.
Everyone in my thoughts.
Nov 7, 2019 04:29PM SondraF wrote:
In a fit of boredom today I contacted an agent about a (rental) house viewing for this weekend. She sent two others we could possibly be interested in, once I sent my list of must haves (American style fridge freezer and walk in shower, amongst others). Sending out partner to have a look and report back - the first is gorgeous but at the top of our budget while the second is smaller but not THAT much cheaper. Its going to come down to being closer to friends with space for long family visits (their own floor essentially) or smaller but closer to hospital and city happenings. :(
Currently surfing the crimson wave and riding the purple bronco (prune juice), neither of which is really an optimal state of affairs at this moment in time. I did achieve Clean Hair, so that was a win.
candy - good job remembering to shut off the iron at least!
Nov 7, 2019 09:58PM Moomala wrote:
I had to google 'surfing the crimson wave'. Ha! But have you gone downstairs yet? Walk-in showers are really great. I love watching Netflix home-buying shows in europe or on the beaches. It always amazes me how small the fridges are. There is no way I'd be able to do this. I have a small size fridge but nothing like I've seen in some of those homes.
MRI tomorrow. If you want to do pocket duty I'm appreciative but only becuase I do not like the MRI. I already know I have cancer in there from recent scans, but the ortho neuro wants to see a follow-up MRI since the last one was in February and showed L4 compression fracture with retropulsion. Whee. Not to mention my back and hip are just really unhappy these last few months. I'll be xanax-ed up and eyes covered with eye mask to get me through the thing. I hate it. I'm having another in two weeks of my thoracic spine. The imaging place thought I'd be happy to do both at once for total of two hours in the machine. Uh no...
DH is taking me out to breakfast afterward! Hurray! It's highly likely I'll eat bacon which is a rare occurrence. Going out to breakfast is also a rare occurrence. I am an oatmeal, glass of juice, cup of tea in my jammies lady. Going out to breakfast never happens. Same with bacon. I love bacon but I might have it once a year. Tomorrow's the day for 2019.
Nov 8, 2019 01:49AM Tanya_Djamila wrote:
moomala. I ll be in your pocket with ear plugs. I take Valium to do mine. Chips and dips.
Candy I’ll be with you for your scan Saturday. Chocolate anyone?
Mae will have snacks refreshed for your Monday appt.
Nov 8, 2019 07:18AM mara51506 wrote:
Moomala, I will be in your pocket for the MRI as well.
Nov 8, 2019 09:33AM Micmel wrote:
Pocket duty for sure I am available as needed! (Sounds like a prescription!). Sending up Good vibes. !!!
Waving hello to you lovely ladies. Been busy running around with mister adderall! Shopping with my daughter, lunch with my sister. Having visitors. Feels good to be busy... almost , almost makes me feel normal. My bff’s aunt, who I am close to, was just diagnosed with IDC.... she’s melting down I feel so badly for her... she’s scared. I know the feeling Boy do We ever understand!! Happy Friday ladies. !
Nov 8, 2019 10:25AM mara51506 wrote:
Having a good day here. Housework, laundry and exercise. Got groceries delivered yesterday as I don't feel like going to grocery store on foot in snow. Was happy to get rid of all the packaging from my various Amazon grocery and dryer deliveries. Other than that, not much going on today which is fine by me. Having a good day though. Should probably get dressed though, am slow to move on that ha ha. I am busier next week with case manager visit, infusion and MO appointment and finally nuse visit. I don't mind being busy either.
I am also available for pocket duty. Bringing chicken burgers on garlic buns with mayo. Not Mcdonalds, breaded chicken burgers from the grocery store. Yummy. That is what I had for supper yesterday.
Nov 8, 2019 12:01PM Chicagoan wrote:
Micmel-Glad to see you have been going out and enjoying life and having people over. Seems like the Adderall was the missing link. So happy for you.
Mara-I enjoy hearing about your days. Thanks for sharing them. I too love doing laundry and eating popcorn. I make mine on the stove with olive oil.
Candy-Hope your volunteer work is going well.
Moomala and Candy-I'll be thinking of you as you undergo your scans.
I've had a good week, playing pickle ball, doing yoga and volunteering. Off to Costco and Jewel now for some groceries, then time to clean. I've been trying to clean a little every day so it doesn't get so overwhelming.
Cheers to Tonja, Santa Barbara, Sondra, Mominator, Mae, Philly et al! Hope we each enjoy the day. I thought Joker was a fantastic movie-also enjoyed Judy.
Nov 8, 2019 12:03PM SondraF wrote:
I'm hanging out at the hospital today after the nurse asked me to come in. Did another MRI spine scan and currently camped out in a bed. They admitted me in case an MRI slot didn't open up this afternoon and in case - think they are worried about spinal compression.
So yes I did achieve going down the stairs and kept on going into the yard, the uber, and to the hospital and up and down and up and down in wheelchairs and beds. These beds are so soft here and it makes it tough to get out. Finally released other half to the pub for food and a drink while I wait for radiologist to read the scans and someone make a decision here.
Mara those burgers sound amazing, I'm guessing they would have some iceberg lettuce on there too? :)
Nov 8, 2019 12:19PM - edited Nov 8, 2019 12:19PM by LoveFromPhilly
in your pocket moomala!! I'm with Tanya in the Valium taking for scans realm. I love médications when they do the job well!! 👏🏾👏🏾👏🏾👏🏾
Love and hugs to all today on this first chilly fall day 🍁 🍁!!
Nov 8, 2019 01:15PM mara51506 wrote:
Chicagoan, thank you for saying that. I appreciate it.
Sondra, for sure I can make them with lettuce for you. Made to order.
I found this cute little video online, should make any animal lover smile.
Nov 8, 2019 02:45PM Moomala wrote:
Spinal compression! Yikes Sondra! Well I guess being in the hospital is a good a place as any, but I just looked up treatment for it and all it says is anti-inflammatory measures, pain meds and PT. So hopefully that's what they'll get you started on if that is the diagnosis. That's what they're looking for on my MRI too since I'm having the pain over into the hip.
My MRI is done. It was super easy and I regret being a scaredy cat about the claustrophobia and not doing both MRI's at once today. I asked them if we could do this and they said they didn't have time. Oh well.
My mom's here visiting now. It is SO good to see her. After this MRI stuff is done I don't have scans until the end of January. DH and I are looking to travel Christmas through the end of January but have zero plans. We're thinking Southwest like Arizona, but I wonder if something tropical might not be more appropriate. I'm not a fan of most of Florida however I've never visited Siesta Key and I've heard that is so nice! Or some smaller trips like Montreal or Toronto. So many choices! DH would like to rent an RV and go for several weeks but I am not doing this in January.
Nov 8, 2019 02:56PM candy-678 wrote:
Hi all on this Friday afternoon. I went and did the church secretary volunteer thing this morning and now surfing the Net and visiting with you all.
The pocket duty foods sound delicious !!!!! I have had only 1 PET scan before so I didn't remember all the diet restrictions 24 hours before the scan. Good grief. No carbs--bread, cereal, pasta and no sugar. This is not fun. 2 hard boiled eggs and water for breakfast, a hamburger patty--plain-- and water for lunch, tuna (out of the can) and green beans for supper with water to drink. I am starving !!!!! After the scan tomorrow morning I am going to eat biscuits and gravy and bacon. Moomala- I too never go out to eat breakfast, but tomorrow I am planning on it. Tanya--- Pass the chocolate. No sugar for 24 hours is killing me. Mara--- Chicken burgers on BUN sounds great.
Take care all and Hugs.
Nov 8, 2019 03:33PM SondraF wrote:
Tucked up in bed now, no update, partner broight a bag back with him after he ran home to feed the cats. Four bed ward so unfortunately have to listen to this poor young woman with lung issues struggling and being extremely upset saying she is going to die. I really need to call insurance on Monday to get into a more private situation next time. Partner totally brought my miniature IKEA stuffed shark though, so I have a bed buddy.
Moomala, we have spent a lot of family trips at Anna Maria Island just north of siesta key and you really can't go wrong with any of those beaches Gulf side. There is a free trolley that runs between them, and there is usually something for everyone. Great restaurants and cocktail places too. Just check if the red tide is around still or if that was rectified. Or give Charleston a try if you haven't, though maybe not in January!
Candy, that diet sounds like something from the early 80s. The big question is what are you going to eat after the scan?
Nov 8, 2019 03:57PM candy-678 wrote:
Sondra- Sorry you are stuck in the hospital. And a four bed ward to boot !!! Are you staying in the hospital overnight?? What is the plan???
Tomorrow planning on going out to breakfast after scan. Scan scheduled for 8:30 am so I figure after the injection and the hour wait and then the scan, should be out of there about 10:30 am good guess. So off to eat after !!!! I am sitting here typing with my stomach growling. And I ate my "lunch" 2.5 hours ago. I guess I eat a lot more during the day than my meal plan today. And these foods (high protein eggs and hamburger) not stick to your ribs foods. Wouldn't want to do this every 3 months like some do. My 3 month CT is easy compared to this.
Nov 8, 2019 04:00PM LoveFromPhilly wrote:
I love that bacon is a once a year treat for some of us folks!
I probably eat bacon once a month. I love it! I can't imagine going a whole year without it!!
Here's to delicious bacon with breakfast with the perfect crispy crunch and yummy flavor! YUM!!!
Nov 8, 2019 04:32PM booboo1 wrote:
I feel like I am so far behind. I still have a dry cough that doesn’t seem to go away, but I’ll take it after the last couple of weeks. I saw onc yesterday, so I’m starting the new drug today (dinner time). I am very excited to see if this one works. I’m not looking forward to the side effects, but some of them may be beneficial. I have to eat a low carb, low sugar diet, since this drug can spike sugar levels. May even lose some weight...
Anyway, to all of those who have scans coming, I’m happy to do pocket duty.
Sondra, I am so sorry about your hospital stay, but it’s so good that you are there so they can help you. I will pray for an excellent outcome.
Tanya, looking forward to our lunch in a few weeks...