My Husband, My Life, My Love, My Family, My Cancer

Sunshine99

runor, nice to see you here! It's been a while - or maybe I've just missed your posts.

A while back, my DH was commenting about how good it felt to go for a run, or go rock climbing, or surfing - some activity like that. I can't remember which one as he enjoys them all. I said, "Well I'm glad your life is so good. My life sucks!" We started laughing. My life doesn't actually suck and I know I have a lot to be grateful for. Still, it's hard when I feel limited in what I can do, where I can go, etc. I did have a Zoom meeting with some of my college girlfriends on Sunday. We graduated in 1980. I was going to say "20 years ago", but I realized that it was 42 years ago. 42?!?!?!? Are you kidding me?

Rosie24

Candy, I’m not sure if you’ve read about this. Pfizer is coming out with a vaccine specifically for the Omicron variant. By March though, it may have faded away. I hope your CT Mon. goes well and shows nothing of interest. Pocket duty for you. (I only got my booster around Thanksgiving so I’ll wait to see if a 4th shot is recommended for me.

https://www.cbsnews.com/news/covid-vaccine-pfizer-omicron-variant-march

illimae

BYD CARE N95 Respirator, 20 Pack with Individual Wrap, Breathable & Comfortable Foldable Safety Mask with Head Strap for Tight Fit https://smile.amazon.com/dp/B08DPTHMS4/ref=cm_sw_r_cp_api_glt_fabc_FM5221VT1RQB460AC2M4

Candy, I have these and like them, although they a a little tight for my chubby cheeks. With N or KN95’s, they are typically reusable in normal circumstances, I think a week is recommended but I go longer, since I use them briefly when popping into a store for groceries or gas. They are $23 for a 20 pack but I expect the prices to rise with the latest mask recommendations. Also, you don’t wash them, that can damage the mask.

moth

N95 masks are technically single use but during wave 1 HCWs were reusing them for days due to the shortages.

I've seen guidance recently to discard after 8hours of total use - so you'd sort of keep track of how many hours you've been wearing it. FWIW, I reuse mine. The reason for discarding is that they lose their static after too much exposure to moisture. So let them dry between uses, store in a paper bag rather than plastic container.

BevJen

Candy,

I recently read an article that says that wearability of N95 & KN95 is much longer than we've all been led to believe. One doctor in the article (sorry, I don't have the citing info anymore) said that you can wear them up to about 50 times. When you have to stop wearing them is when the straps loosen because then they are pretty much worn out and won't provide the kind of a seal that makes them so good.

Perhaps someone else can weigh in. A news report in the DC area last night and this morning said that if you and another person are in a room, a cloth mask provides about 26 minutes of protection. A surgical mask provides about 1 hour of protection. A KN95 type mask provides well over 24 hours of consistent wear time -- I want to say like 46 hours. So there is a huge difference in protection from different kinds of masks.

candy-678

Rosie- I did hear that Pfizer is coming out with an Omicron specific vaccine. I read March too. But, really? Have to go thru the hoops of FDA and CDC, so I bet not available till April. By then who knows how Omicron will be doing, or will we move to another worse variant.

CT Monday is to follow up on the "nodules" in my right lung. Not due to check liver mets until February (3 months). But MO wanted to look at lungs again earlier than 3 months.

I Googled about wearing N95 masks. Can put in a paper bag and let sit for a few days between wearings. To discard if soiled or straps worn. The pharmacy is selling them in singles, but I probably need to buy a pack of them somewhere. Mae I will check your link. I read you have to make sure you are not getting knock off masks, but a good brand. How do you know what you are getting is up to snuff?

BevJen- I saw that on the news too. That is why I wanted to use N95's now. When I go to my cancer center for scans and MO visit I am there several hours. Wearing my surgical masks would not hold up per this news article.

illimae

Candy, I have no guarantees that I’m getting absolutely legit product, however, the N95’s had a NIOSH certification number and we’re multi layered. I just picked what sounded best at a reasonable price, upon inspection they look good to me. I also have KN95’s (which I prefer for brief masking), they were made in the US and dated 2019. I may be fooling myself but I like to think that a pre-pandemic product is less likely to have been rushed to market by random makers in a effort to take advantage of a situation that hadn’t occurred yet. When they arrived, I took a drag off DH’s vape, put the mask on and exhaled in the bathroom mirror to see how much, if any vapor/smoke came out and where. My amateur science experiment only revealed a gap above the nose, which I corrected with the imbedded metal tab.

Margun

MoCoGram - what triggered to your doc to do bone biopsy ? Bone pain or other symptoms?

I have bone and joint pain lightheadness some dizziness and wbc count dropped slightly from the normal range.

Pi-Xi

This makes for some good reading. My understanding is that non-fit tested N95s have about a 10% leakage rate. This was prior to the more transmissible Omicron variant.

https://www.acgih.org/covid-19-fact-sheet-worker-resp/

Pi-Xi

Sorry for just dropping in like that! I thought I was in the Pandemic thread for a moment. I have been reading this thread for years now and feel like I know you all. Wishing you all good things and successful treatment options. ❤️

mara51506

Candy, I disinfect masks between uses by misting rubbing alcohol. Does not make them wet but does disinfect them. Just don't spray the inside because it could make your lips taste like it. I disinfect the straps and the outside.

MoCoGram

Margun, the biopsy was the final procedure to confirm that breast cancer had spread to bones in my spine. My MO was suspicious when she noticed my calcium level going up. That was followed by a bone scan, CT scan, MRI, and lastly a biopsy. Luckily, I don't have bone pain. Some of the side effects you are experiencing might be from the letrozole, but you should probably follow up with your MO. Good luck!

Margun

moCoGtam. Thank you for your response. Letrozole generated already osteoporosis but I did not know that it can lower wbc. I wish to everyone better and healthier years to come.

moth

Re reputable source of n95 in USA, BCO recommended on Twitter this resource

Projectn95.org

https://www.projectn95.org/?sf158234761=1

emac877

I've been catching up on the thread for a while. Candy I am sorry. I empathize with your feelings. I struggle with that too. While I am still working, it's hard for me to see people I went to school with or even precepted as new grads now moving forward with careers and doing things I had only dreamed of. I recently left my position in ICU. Some of that was due to my physical limitations and fatigue and some due to having worked this pandemic from day 1 and being so burnt out I can't even walk into the building without tears some days. I'm taking a much lighter job in the imaging department. It's a part time 8 hour day which is going to be a financial adjustment. So I do feel jealous, especially when my full time coworkers talk about overtime money and traveling opportunities. It's just not my reality any more and I've had to really walk that through my brain a lot and come to some sort of peace with the fact that my life is not theirs and I have a very different reality. I have to be very conscious about making it a point to be grateful for the things that I have and I will admit, on days that I feel bad, it is a whole lot harder to find gratefulness. I feel like I have aged 20 years in the last two and that has been one heck of a roller coaster emotionally. I'm trying not to come off as completely well adjusted. I'm not. I'm still angry and sad and frustrated on any given day and that leaks out at times. Just, all of this to say I get it. I totally understand wanting the life my friends have. I think all of us here do.

Incidentally I am opposite of you on the Covid thing and my best friend. She is very vigilant and determined to never encounter the virus at all. I am not so much. We agree to disagree on some of the issues surrounding it. I think some of that has to do with the fact that I've been in the hospitals fighting with it for two years. By the grace of God I haven't gotten Covid and I don't have any other explanation other than that. I also feel that with my diagnosis of MBC I have already stared down death and struggled through that grief. I refuse to let Covid take the time I have left and drive me indoors and away from the things I love. In Oregon we are more strict than most states and still have strict mask mandates and such but they aren't always enforced. I still go to church and go to the gym and the grocery store and try to be as safe as possible but I just can't stay inside and isolate myself. That anger I talked about bubbles over the top if I have too much time to myself and my thoughts.

Question for Mae - this is a few pages back but are Peccaries the same thing as a Javelina? I swear they look almost the same. I love your wildlife photos!

Moderators

yes, Moth, and on our site. Thanks for posting.

KBL

Sorry for the late reply on test results. My MRIs say the cancer is the same, no let up. I was thinking for sure they would retreat. I still think Xeloda is working because I can eat now and have gained eight pounds back. They do say I now have renal cysts. I hadn't ever heard of that. I have a telehealth visit with my oncologist Monday. Two of the three tumor markers came down again this month. The other thing I'm concerned about is my AST and ALT. They have shot up to the 60s. I thinking it's the Xeloda. I'll be talking with doc to possibly lower dosage.

I have my grandson for five glorious days, so forgive me for not replying sooner.

candy-678

KBL- Well "the same/stable" we can take, right? I have had renal cysts too. They don't seem overly concerned about them.

Sad to read on the Ibrance Thread that a member RhosgobelRabbit passed away this morning. Another one of us gone.

KBL

Good to know you have them too. I won’t worry about them. I’m heartbroken over Rabbit’s passing.

illimae

KBL, I’m sorry results weren’t what you hoped for and what your body seemed to be telling you but hopefully same is ok for now and there’s more improvement over time. I know it’s very disappointing thought.

Sad news about rabbit, im not in the ibrance thread and had no idea.

Tanya_Djamila

Heartbroken over losing Rabbit too. KBL thanks for checking in.

Tany

Chicagoan

In shock and heartbreak over Rabbit. Life is so fragile-we truly do no know what day will be our last. May she rest in peace.

Micmel

I am so sorry about rabbit. Another loss that hits hard. They never stop coming. Thoughts for her family. May she be i peace.

KBL

Thank you, Mae and Tanya. My heart is really heavy for Rabbit. She was so witty and funny.

Kikomoon

I didn’t know Rabbit but just checked in on the Ibrance thread. She was just fine until just last week. Her posts were so thoughtful, I’m heartbroken over her passing and Ididn’t even know her.

mara51506

i am not familiar with Rabbit but she obviously meant a lot to a lot of you. My condolences to her in person family and friends and all the friends and family here as well.

Not doing much today. Was getting tired of my beans the way I was making them but older brother gave me some chicken soup yesterday so I was inspired to cobble a different taste for it. Added some black beans, wheat bran for extra fiber, it already had potatoes, carrots and pasta. Decided to go crazy and added shredded cheese, a dollop of queso and some taco seasoning along with italiano and a bit of salt. Heated it and added croutons for a bit of crunch on top, was delicious. So glad I tried that. I did not use all of the soup, might use it at lunch and have a third of a vegan burrito as a side dish. See how i like that.

moth

oh no, not Rabbit She posted on the Death & Dying thread - so very thoughtful. What a brutal disease. Condolensces to her family & friends. May her memory be a blessing.

runor

Sad for the loss of Rabbit. Thoughts to her family and friends.

KBL - stable is not great news but I am happy for you that it's not worse. Have fun with that kiddo!

KBL

Thank you, Runor. He is so precious and has taken my mind off Rabbit for little bits of time today.

santabarbarian

N95s CAN be reused. Heard an ER doc saying buy 4 of them. Number them 1-4. Wear for one day and set aside for 3 days. Can be worn rotationally and wiil fall apart before not being protective.