My Husband, My Life, My Love, My Family, My Cancer
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I just read through this whole thread. Everyone is so supportive. It's really lovely. I almost feel like an intruder as you all seem to know each other. I was diagnosed with MBC in Dec. 2020. When I look at the last 9 months comparatively speaking, I guess I am doing great. I had to have emergency spinal surgery in Feb and suppose I almost died. I have a neurogenic bowel and bladder and couldn't bear weight on my left foot because of impending fractures so had to use a wheel chair and a walker. With rehab I can walk now and I do yoga daily. So this is why I say I am lucky. It doesn't mean I don't have days of deep depression especially after my falsodex shots. I am 65 and I live with my caring husband. He is sometimes just so sad at the idea of losing me which just tears me up inside. I have a son who lives in Rome (I live in Phila. PA.) My daughter and granddaughter live 4 blocks away and I know I am again lucky for all of this. But this is just the hardest thing. I know you get it. Thanks for being there for each other
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Sorella~Welcome to our living room. I’m sorry that you had some issues with your leg and am very glad you’re doing better. Certainly no intrusion here, we all support each other because we need someone who gets it. My DH gets sad also. He also drives me crazy. I welcome you with a huge hug.
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Sorella, jump in whenever, you are always welcome and big bonus points for reading up on the group.
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Sorella gold star ⭐️ head of the class award for reading through ALL of this. Welcome.
Chicagoan wonderful to hear of your upcoming travels.
Maes DH happy birthday! Couldn’t make it to group today-grandkids get out of school at 3 no bus so my dh and I have been sharing pickups.
Mara I did try the vinegar in laundry 🧺 makes the sheets and towels nice. I like it and it’s so much cheaper than softener. No vinegar after smell.
Goldens that was great advice for Candy. Really tough staying connected and being isolated. Candy maybe you can start an outreach at your church and help the new pastor get to know his shut in congregation. You used to be the secretary there so maybe they would welcome some assistance. I hope it all works.
Kitty I’m glad the steroids are making you feel a bit better.
Booboo hope all is well.
Available for pocket duty for whoever needs it.
Tany
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Tanya, glad you are liking the vinegar. It really does soften, I also have not had any lint in the tumble dryer either.
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Hi Tanya. Well, I decided to see my onc yesterday, and she was SO kind to me. I was ready for a lecture or cold shoulder, but she couldn’t have been nicer and more supportive. Anyhoo, we are going to try one more treatment to see if I can tolerate it. She is putting me on an old drug called Cytoxan and Methotrexate. So I guess I’m officially back in the fold with treatment. She is a bit worried about my kidney function, so we will keep a close eye on that. I also have a mass in my stomach that we’re hoping to get rid of, but we may need radiation for that.
Sorella, like my friends here, I’d like to say “Welcome to Mel’s Living Room”. That’s what we call it. It’s such a comfort to come and let go of your junk—the stuff that’s bothering you about your cancer, or really anything. It’s like a safe, comfy place to come and connect with all of us who, unfortunately, join you in navigating this disease. I am originally from the Phila area, and I miss it.
Chicagoan, have a blast on your trip. It’s also on my bucket list.
Hi Mel and all. Hope everyone has a good day.
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BooBoo~I miss you being in the Phila area too! We almost got to meet before you moved! I am also in the Phila area. Sorrella.
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Thank you all for the welcome! Micmel, and anyone else out there with a DH who drives you crazy. It is so true! The constant worrying can make me nuts. I'd love to try the vinegar thing but our washer and dryer are in the basement and the railing isn't great so DH does all the wash. May sound great but I miss doing it my way and keeping the basement straight. Steps were the last thing I PT allowed me. I have a chair lift but I don't use it anymore 🙂
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Booboo, I just started Cytoxin and Methotrexate, too. I am taking a low- dose oral version. This is likely to be my last treatment. This is day 4 of daily dose of Cytoxin- no issues yet. I will have first dose of methotrexate on 10/18 and will take that twice a day but only two days a week. My MO will keep a close check on my kidneys, too. I have been told to drink lots of water. We will have to compare notes.
I will try to catch up and respond to others soon. Hugs and prayers from, Lynne
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Sorella - WELCOME! I’m sure after reading through all this you know that you have the best of friends in this room❤️. Wonderful support from sisters with the same cares and concerns. Some are great with keeping track of everyone and for that I am deeply grateful. I’m finding that my memory is starting to really fail me at times. Treatment, age or both? No evidence of dementia in my family but then I was the first with breast cancer. So if you need to vent (about hubs -lol) or celebrate good scans, we’re here for you
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Dark and rainy here so will stay in except to take out some garbage. Feel better mentally today than yesterday, will just walk on the spot throughout the day to get to 10000 steps.
I just had a new food that was new to me, Konjac noodles, found them on Amazon, could not find in my own stores. I love the fact I don't need to cook outside of the normal way I heat my meals, I feel more full with those and my normal portions of beans, spinach, small amount of cheese and my different vegan "meats". I love the noodles just take on the taste of whatever I am eating and are almost no calories. I can see using those as part of a snack instead of chips and as a stretch for my regular eating as well.
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Mara~ I’ve never heard of that before. I’m going to look them up. I don’t eat noodles much but it might be soft in my mouth with the constant issues I’ve been having. Always full of good ideas.
Gm Goldens. Hope you slept well. I did not really. But it’s my own fault, I slept all day long yesterday. So my bad. My body always feels ready to go to sleep. Nap time check , bedtime, yes please. Love my covers!
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Lynne,
That is SO awesome. I was trying to see if there was another thread for those who take Cytoxan, but couldn’t find it. Yes, yes, my friend. Let’s compare. So good to hear everything is good for youso far. God bless…hope we both get some mileage out of it!
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I really enjoyed them, they sell them on Amazon. They really stink but a simple rinse in a collander gets rid of the smell. They are tasteless so will take on whatever flavour your food is. Full of fibre so good in other ways. Make sure to fully chew them so they don't stay in the system at all. Easy to do and really good. I will be making small snacks with these. I did not even use the serving size of a 1/3 of the package. Really satisfied.
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It has been a few hours that I have checked in. I read your posts to get caught up.
Welcome Sorella. Glad you are joining us in the Living Room. Come plop down on the Couch anytime.
Booboo and 50'sgirl- I used Cytoxan IV (Adriamycin and Cytoxan) when we thought I was Stage 2. Is this the same med, but in pill form? I hope it works for both of you. 50'sgirl- I hate to hear this could be your last treatment. And Booboo glad you are trying this treatment.
Tanya- Good thoughts about the shut in program. We are a small church body, so the shut ins are just a handful of people, but still they are important and shouldn't be forgotten.
I went to my PCP yesterday for my 4 month check in. Nothing really new. Just got him up to speed about all that has went on. He did surprise me though. He has always told me to use Tylenol for my pain and at the end of my visit yesterday he mentioned I could try Percocet or Norco if I wanted. I did not get a script yet, but I feel this is a breakthru with him that he is starting to understand that I am in a lot of pain. Also, I told him of my sisters death of MBC and maybe he is thinking "why not give her some pain meds if she says she is hurting". I will think about it and decide if I want to take him up on the offer. I am pretty cautious about meds-- grogginess, constipation, etc but maybe just use at night to get better sleep and a break from the pain. During the day I am up and about and can deal with it better.
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Mara - the Skinny Pasta available on Amazon does not stink. We did not care for them (chewy texture), but lots of folks do. They're also called shiratake noodles or miracle noodles if your Googling. There are several articles about the safety of this product (thus your advice to chew them well), which could just be a common sense issue.
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SeeQ, I agree. I did read about some people getting bowel blockages but chewing more can help avoid those and not overeating the noodles would be a help also even though they are low in everything. I also eat digestive enzymes with every meal along with fully chewing stuff as well. It has fixed my digestion of everything. I did not mind the smell when opening since rinsing off did leave them with no odour.
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Candy,
Please take the pain meds. I understand your concern about them, but I sleep so soundly at night because of them. It also helps with your day to day activity. It does not mean that you are weak. The pain some of us experience is real, and can really mess with you mentally if you don’t get it under control. I fought for a long time (I still question dosage every time) about whether to take pain meds, and although I am still on the lowest dose they can prescribe, my quality of life is so much better.
Take care.
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I'm not sure if she posted on this thread but AmyQ has been on BCO a long time ... wrenn just passed on a msg on the trodelvy thread that Amy is moving to hospice & wanted to let her friends know.
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Booboo- I have pain from ortho issues--- a labrum tear of shoulder that PT says needs surgery, a lumbar disc issue that ortho doc said needed a lumbar fusion, and a hip issue that ortho doc said could qualify me for hip replacement. But.... not a surgical candidate due to MBC per ortho docs. So not cancer pain, but related to cancer since we cannot fix the issues DUE to the cancer.
Thank you Moth for passing along the news about AmyQ. May she find peace.
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Moth, Thank you for letting us know about AmyQ. Although I haven’t seen many posts from her recently, I remember her well from The Bone Mets Thread when we were both frequent posters thereseveral years ago. She has always been suportive to so many on these boards. I wish peace and comfort to Amy and her family as they enter this new phase.
Hugs and prayers from, Lynne
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I know AmyQ's name from lurking on a lot of different threads that did not apply to me so never commented. Always have sympathy for the sisters/brothers that have to take the hospice step. May her passing be painless and have her family and friends around. I am so sorry.
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Anyone heard from Leftfootforward? She hasn't been online since September 25th. Hope she's just busy with her kids and school.
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Sorella— welcome!
I read this thread daily. Haven’t really posted a lot lately but wanted to welcome you to Mel’s living room. It’s a great place to chill.
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Candy,
I have read you post before that you are ineligible for surgical procedures due to the MBC. Have you checked this out with your "new" cancer center? To me, and I really have no knowledge about this, it seems like this is an outdated position by the ortho doc you are talking to. I have read numerous comments on BCO of people who have had surgical interventions for ortho issues despite having MBC. I myself had a complete hip replacement along with a "nail" or "rod" in the other hip both done in April.
Just wondering who is telling you this and why.
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BevJen- The local ortho docs--- one of which is from Pennsylvania and moved here to practice here (so he has worked in "the big cities" not just rural areas) --- says I am not a surgical candidate. Also, my local PT therapist--- been a therapist for years and owns his practice with PTA's under him-- says we would only do conservative therapy. Also, I saw a local pain management doctor with the local ortho center and she said she would not even do a epidural steroid injection on me much less surgery.
Now if I had an emergency or a broken bone, yes they would do surgery. But not "elective" procedures. Conservative treatment of meds and PT for me.
I have not asked my MO as she is an MO only. I go to a cancer center only, not say orthopedic oncology. I can get a second opinion from a St. Louis ortho doc ( I go to St. Louis for my cancer care, as I live in a rural area).
And do I really want a major surgery of a lumbar fusion. Esp when I have bone mets in the spine. Would need to be off blood thinner ( I had a PE in May) and would need to be off cancer treatment to raise white counts to prevent postop infections. And I live alone with no support system for a major surgery. Lots to consider.
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Welcome, Sorella! I feel the same way about my laundry; I am fussy and like to do it myself. Mine is in the basement too and, though steps are hard for me, I still can do it. My DH carries the basket up the steps because that I cannot do.
Booboo - so happy to hear you will be trying a new treatment! I am sending best wishes that it will be successful.
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Hi everyone, welcome Sorilla to Mel's living room.
well, I thought I was on track to go home but my fever spiked at 103 during the night and my heart has started racing again with the slightest exertion, so I have no idea what their next step is going to be.
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sending out hugs to kitty. You’re having a hard time my friend. I hope your fever breaks.Hello Lee~ good to see you.
Hi Tanya. Good to see you too darling.
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