My Husband, My Life, My Love, My Family, My Cancer
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Hello ladies! Went to my bff’s Christmas Party tonight and we got there around 4:00 pm and stayed until 845 pm. I had a great time. My (like aunt) was there and she just was diagnosed this year. We hugged and cried She is amazing. She thanked me for my support and she said many days, I was the only one she even wanted to talk to. No one else understood. Her eyes filled with tears, she hugged me and thank you. She was the generous gift giver this year that was so kind and came out of no where. To see her. I felt like I needed to go, for her and my bff. Both so good to me. I truly had a blessed Christmas. I couldn’t ask for more.
I found out today my niece is again In the hospital again in full kidney failure. She is 39! Immediate dialysis.. not looking too great. Chronic, it seems. It is getting worse. I’m really worried. It’s always something. She has a 6 year old son. Heart breaking. Apparently she was exposed to chemicals from her job, through an open wound in her skin. Gave her a blood disease, that has ruined her kidneys. Exposure has made them fail. I hope they can heal. She’s too young for this crap. Sigh!
Hope all is well with you all.
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Micmel, glad you had a good time with your bff and aunt. Good you are able to help others through this too. I am terribly sorry to hear about your niece however. I am sending positive thoughts your way.
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Micmel, glad you had a good time with your buff and aunt. Good you are able to help others through this too. I am terribly sorry to hear about your niece however. I am sending positive thoughts your way.
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Tanya,
I saw the stories on the homepage:
https://www.breastcancer.org/community/acknowledging/metastatic
They are listed on the left-hand side of the page
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touching stories for sure.. thank you ladies for sharingthose stories!
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illimae, your photo there is FANTASTIC! (Who knew Uncle Fester was such a babe?!)
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Hello to all of you brave and inspiring people.
First I want to thank all of you so much for you stories and feed back. It has helped tremendously.
Second I would like to introduce myself. My name is Scott. My beautiful wife Shelley was diagnosed with metastatic breast cancer in March of 2018, from the start. I have been step by step with her though this journey. I just decided to join this group because of the turn her cancer has recently taken. The fear and anxiety is sometime so overwhelming for my wife and I. I would like to say I understand, and that we can get through this. But to be frank, I have no idea what she is going through. I can’t even imagine what this is like for her. All I know is that I am the one who gathers information and does the research. Some of which I didn’t want to know, but am grateful for the knowledge. I study as much as I can so that when she is ready to know I am giving her valid information.
I put all of her information, diagnostic, treatments and status on my profile so that any help, any of you can offe, is based on her status.
Where we are? Shelley has had 4 lines of treatment starting her fifth (Havalen) in two weeks. Last week after pressuring her Onc for a brain scan Shelley came up positive with 3 brain Mets. The biggest is 1.25 cm and has minor swelling. One is 2 mm and the other is the same but is really close to the lining of her brain. She has her first stereotactic radiation therapy today. We are both really scared due to the uncertainty of this new path on this journey.
What I would like to know is this. What is she in for with the radiation? SE and how we’ll see might recover. Will it impact her cognitive function? She is scared and so am I. Any helpful words are more that welcome.Shelley and I have complete Faith in our Lord and Savior. He has provided much of our strength to get though this time.
Thank you again for all of you.
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Scott - Illimae and Mara are the active brainiacs on this thread and will likely be along to comment on some of those specific questions, but in the meantime you may want to also pop over to the specific Brain Mets thread. I think there may also be one for the Halaven. I wish you and Shelley the best of luck and success with her upcoming treatments - you have found the strength this far to push through with the treatments, I am sure you will both find the strength again to face the fear of uncertainty and the unknown.
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Am I the only one who detests this week between Christmas and New Years? Every year I struggle - holidays are kinda over, there are only leftovers to eat, things are closed and most of town is overrun by tourists. And now its just dark and grey and crap and Im not a fan of NYE anyway. Its a week between that gives way too much opportunity for consideration and introspection that can lead to unhappy places. If I had a functioning pelvis I would be on the verge of doing something crazy like take a train or a plane to ANYWHERE else this weekend, just to get away.
Also not helping - an article in the Guardian about how the NHS offers no mental health support for terminally ill people. Thanks for the front page reminder!
Probably time for another weekend break from Cancerland. Take care everyone!
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Sondra,
Oh how I relate. I thought I was becoming Scrooge....I can’t wait until it’s January, and things are back to “normal”. Anyway, wanted you to know I’m right there with ya
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Santabarbarian, hahaa, thanks! I have a pretty oddball sense of humor and I remember taking that photo in my office, thinking how funny it was. I showed the side by side to several coworkers who didn’t want to laugh but couldn’t help it, such fun.
Scott, SRS worked great for me, they were shrinking in the first few months and gone at 6 months, I’ve had more pop up twice but they were small and the procedure continued to work well. SE’s were minimal, some swelling in the forehead and face from the numbing meds and some random nerve pain, like twinges, almost like my brain itches, if that makes sense. Rest is recommended after but I had plans after my first SRS, so I went out to see a friends band play that night. Some cancer centers use a mesh mask, others use a head frame. I had the head frame, the first one was so scary (I’m needle phobic) I cried and cussed and almost backed out but after some Ativan and encouragement by the staff, I made it and can say that the build up was way worse than the procedure itself.
Sounds like your doing a great job supporting your wife, that’s wonderful. As for what she’s thinking, it might surprise you but many of use spend a lot of time silently worrying about the impact our cancer, treatments and eventual death will have on others, spouses and children particularly. I’ll admit that despite knowing better, I sometimes feel like a burden and worry that my husband will get into a hole of depression, bad habits and isolation when he loses me and that’s really hard.
I wish you and your wife great luck.
Waving hi the everyone else
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illimae thank you for the insite. Shelley has the bare knuckle fighter in her. She has had it from the start. Are there any se that I would need to be aware of that might require attention?
Her first rad treatment is in the books. So grateful for the many words of support.
Week off of chemo. The piqray didn’t work at all. Havalen starting after srt.
Prayers for you all
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Scott, the only big deal SE I can think of with radiation is swelling. Steroids are often prescribed after brain rads depending on the size of the lesion and likelihood of swelling issues. Mine were all smaller than 1 cm and I didn’t require steroids but I’m not sure if your neuro rads onc would want Shelley on them or not. Excessive swelling could lead to complications, perhaps seizure or stroke, so I’d pay special attention to how she feels, headaches, speech and motor skills but hopefully the 1.3 cm tumor is still small enough to respond well with minimal SE’s. I expect she’ll been worn out from the experience too, it’s very high stress.
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Good to know.
She is on dex low-dose. The doctor started her on it last week because of some swelling already existing
No question about the stress, I don’t know how you girls do this. You all are troopers. Shelley says all the time, “ cancer Messed with the wrong girl!
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Hi ladies!! Lol at the week between Christmas & New Years! I just stay in. If the gatherings are done. I have one more left tomorrow to have. It’s been a wonderful Christmas. I have had a wonderful time. Funny. I was the Scrooge the whole month!!
Scott, welcome to our home here. We will certainly keep you guys in our positive thoughts! Mara should be along shortly as well. She’s our other miracle knowledge person.
Hope everyone is doing. Good!
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Welcome, Scott1975! You and Shelley have come to the right place for support through this
The Mods
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Morning all.
Just checking in to say HI.
Not much here today. Some housecleaning and laundry. Supposed to be in the 60's, so hoping to open windows this afternoon and air out the house. Like the fresh air coming in. Pretty quiet day so I will be checking Threads for anyone who wants to talk. Yesterday had no energy. Doing better so far today.
Hugs to all.
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Been busy all week. I need a nap! I’m waiting for amazon to deliver my case, for my iPad. I want it like today! Want to protect this sucker. I love the fresh air too! Not warm enough here Though. Everyone try to smile about one thing today. No matter how little. I’m trying to be more positive. I’m really sick of feeling so sad. I wish that wasn’t an emotion. Fear also
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Hey Candy
Went to the gym this morning and the teacher recognized me. She was very kind. Any workout is a good workout at this point.
I’m gonna eat lunch and take a nap. Have a great day and enjoy the breeze
Tanya
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Mel smiling
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Scott, I have been through both whole brain radiation and also had some local treatment as well 2 years after.
For myself, I had no issue with the targeted radiation or low dose steroid that it needed. I found it was easy to tolerate and I was able to function normally with little side effects. Definitely, targeted treatment is much easier to tolerate and is known to give some good results.
I am still stable from both neck down and also brain as well as of my last MRI. This is almost 2 years. Never had mets anywhere but the brain. Keep hope alive. I have been dealing with this for going on 5 years in 2020. I have the most aggressive form of breast cancer but I am still here in relative good health. Stay physical active, even if it is walking, incorporate strength training. If you already do exercise, perfect. That helps tolerate side effects and just keep you in good shape. Good luck to you.
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I was very proud of myself today. I managed to get my butt to a Goodwill donation today without any help. I actually got rid of a large printer that has been taking a lot of space. I had to walk to 20 min the bus, walk a long driveway and even managed to go shopping on top of that. Gave me over 10000 steps not to mention that the printer as fairly heavy as well.
As I set earlier, very proud of my self. Hope everyone else had a decent day as well.
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Just stopping by to say 'lo to everyone. Mara - that is awesome about the printer - doesn't that feel good to get it out of the way? We got a bunch of clothes that had been sitting around off to the charity shop finally and I love looking at that newly clean space! Tanja - well done for getting in a workout too!
Have Moomala and Philly checked in?
Gotta get out of the house today, was so tired and headachy yesterday from the injections on Friday that we just stayed home and I slept a bunch. I did get a walk in, which was good. I increased my radius a bit and wandered past the nightclubs at the end of the neighborhood to see what all the bass was about last night. Some really bad techno is what it was!
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Scott, has your MO discussed retesting the pathology of her tumor or perhaps taking a new biopsy from the liver or other site? I’m particularly wondering about Her2 status. Some treatments also take some time to show progress and she’s going through them quickly. How about a second opinion from somewhere like MD Anderson
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Thank you to all who have responded.
Jen, we haven’t had an appointment with her oncologist in two weeks. The retesting and class of her2, receptor status , Will definitely be brought up and pressured to be done!
The more I read the more I find out that cancer it’s like cockroaches. Even a nuclear blast sometimes has no effect. Bizarre indeed.
Shelly and I pray for all of you as well! We are blessed to be able to walk this journey with Him!
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today was a relaxing day here. Got my case last night and my glass protector today. It came with one, but somehow we managed to crack it the first day. I ordered three back ups, just in case. I'm not fooling around. Lol. I want this iPad around for a long time I got the rose gold. Love it. Matching case, so surprised.! I was afraid to touch it! I so always wanted one, just never said anything about it really, expenses. I worry about. But then again who doesn't. I stayed in Bed most of the day. I needed a day down. No real nap for four days. Yesterday, one hour I laid down. But been visiting as much as I can..... few more gifts to give out. Then it's all done again this year! Boom. 2020!🎆🎇🎉🎊🎈💥🤶🏻🎅🏻🤩🥳 New Years Eve! Round the corner!
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Scott, I agree on the cockroach comment. Yes I do
Tanya~ smiling back....
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Yes, I also agree on the cockroach comment for sure.
Glad you are resting up Mel. This is a very busy time of year for people. My brothers family had three days of festivities. Christmas Eve, Christmas and Boxing Day for them as well.
I think I should sleep pretty well tonight. I went out in the rain because I needed a walk and a few groceries as well. Walked some, took the bus some, walked more. Got what I needed then waited half an hour in the bus shelter, walked home. Sounds boring but the fact that I was willing to go out on a day like today is a big step for me. I am pushing myself hard after my fainting spell. Will probably eat light and go to bed early. Got a lot of steps in today. Who knows what tomorrow brings. Laundry was done but I do it every day as I quite enjoy it.
Sondra, glad to hear you are getting out. I know you wanted to do that. That is great.
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I hope everyone had something enjoyable over the holidays. I had lots of family activities and enjoyed having almost all of my side of the family (8 of us) together for two days. DH’s side gets together more often but it was fun to have the grandkids get to be with each other for a few days too. We had Christmas early with them. The only bad thing was 5 year old grand daughter was sick with a cold, cough, and on the second day fever, which we didn’t know till we got to her house. They did take her to urgent care once the fever showed up, but some of us, including me, were wondering why we were all being exposed to this without being warned. I think her mom (my step daughter) thought it was “just a cold”, but GD stayed on her mom’s lap the whole time, which is not usual at all. I think I escaped getting anything, but I’ve been thinking about how to handle this in the future.
Mel, enjoy that new iPad! I’m on mine way too much but I find this one coloring app very relaxing, and of course there’s this site too. 😊
Mara, good for you in getting motivated to get out for more walking. It’s not easy to push ourselves but you seem very good at it.
Sondra, good for you too for getting out and exploring. Laughed at the techno music discovery, not my thing either!
Scott, welcome, this is a great place, even though we’d rather have gotten together for a nicer reason. I especially enjoy the random conversations and pictures shared. There’s so much support here for each other and there’s an understanding that isn’t easy to find.
Tanya, Wow, the gym, go girl! I’m not much of a gym person lately, but I do need to do more. I go to a water exercise class when I can and am finally cleared (after lumpectomy) to go back next week. It’s very easy on my joints and cranky back, and the water feels good too.
Wishing you all a Happy New Year. We march on, or whatever version of that we do . . . 🌸🌺🌸🌺🌸
Rosie
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We adopted a rescue dog a week ago and she is pure joy. She’s a terrier of some sort, 6 years old, has a crazy underbite, and wiggles her backend like crazy. I’ve been working on her house training this week after she peed inside the first two days, and she’s doing excellent now. With the two dogs, I been getting a lot of walking in. Her name is Daphne and she is pure love. I can’t wait to get her a proper haircut soon but here she is .
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Jen - she is ADORABLE. That underbite just adds to the cute. Id love to have a wire haired terrier but not with two cats in the house!
Rosie - we live for electronic music in this house, but there is Good stuff and Bad stuff. That was most certainly in the Bad column!
At home today doing some life admin stuff and light cleaning. Informed other half we are having crockpot chili for new years dinner because I can't be bothered with a big cooking to do and the fridge is full. I may bake some cornbread (because there is nothing better for breakfast than cornbread with maple syrup on top) to go with it. At least the sun is out and the skies are clear and its supposed to warm up considerably too. Going to crack open some windows and air the joint out.
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