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

moth

It's paywalled but SF Chronicle did an article on this yesterday https://www.sfchronicle.com/health/article/How-lon...

you can reuse them but if they get wet ffrom certain substances they can lose the effectiveness of static layer. They don't work just by mechanical filtration, they work by using materials which attract virus particles to them using small electric forces.

"Alcohol and bleach destroy the static charge within the mask, which is vital to its proper function [5], [6]. The active layer of an N95 mask is 90% empty space, so the fibers need help to trap 95% of the particles that pass through—they get that help from static electricity" - when they were reusing them in hospitals, part of the cleaning strategy was 're-charging' them https://www.ncbi.nlm.nih.gov/pmc/articles/PMC71535... In this study they used a hair dryer. I've seen other studies where they used some electric gizmo to zap them & make them staticky.

I wear by best medical grade N95s for medical appointments & I keep them in a paper bag in between & wear it until it's just too grungy or crushed. I don't clean them - just let them rest in their paper bag so they dry from any moisture from my breath. I'm guessing they each get about 40h total use. I don't really go anywhere else that I'd need a mask. On our walks, I have a retail N95 in my pocket that I slip on if I see people approaching & can't get away. I throw out masks that get wet or that just get crushed & aren't fitting well.

LivingIVlife

I did not know Samantha (Rabbit) but on reading the posts she was a caring, wonderful woman. My condolences go out to her family and many friends.

LivingIVlife

I still use the surgical mask but have doubled them. I just make sure everything is tightly covered on my face.

KBL- I know you are enjoying your grandson but wanted to mention that my CT scans always come back the same as the one before. No movement either way. My MO calls that good news. Maybe I'm fooling myself to think any different. We will see on my next scan scheduled for January 25th.

runor

I used to wear an N95 when I had to shovel out the chicken house. Chickens create an incredible amount of dust, dander and feather fluff, all of which I am wildly allergic to. Shoveling without wearing a mask was pretty choky and dusty and often I had to charge for the door, holding my breath then bursting out, gasping for fresh air.   3 hours later  I would have the sensation of an elephant  sitting on my chest and I couldn't breathe. That's how I figured out oh, maybe I should mask up for this particular task. So I got some N95.  For me it was particulate that I was hoping to keep out of my lungs. With chicken manure and god knows what else being airborne, it didn't take long for those masks to develop a very funky aroma. You could SEE the layer of dust stuck to the outside of them. I would swish them in hottish water (no soap) and air dry them and they worked very well for a long time to filter particulate. When that smell no longer washed out, I tossed them. I think for public wearing where you expect a reasonable distance from other people, an N95 that has been hot water swished and air dried should still work pretty well. 

KBL

LivingIVLife, thank you. I’ve been pretty stable since July of 2020, but I do get nervous because I have so much disease, can they really tell whether there’s more than the last time? I may have another endoscopy in April to check how my stomach is doing. Maybe they’ve tamped down in there, and that’s why my markers are coming down. Since a lot of imaging doesn’t work for me, I have to go by how I feel, and I’m not horrible right now. My back is killing me today, but whose back wouldn’t hurt picking up a 32-pound child? I know I shouldn’t, but I can’t help it. Lol. Thank you for letting me know.

Kikomoon

I could use some pocket duty. I had my 3-month CT scan and brain MRI last Friday and still no word of results. I have come up with all kinds of scenarios in my head, good and bad, why it is taking so long. I have an appointment with my MO tomorrow, so maybe she is waiting till then. But why would she wait to tell me in person? She has given both good and bad news both on the phone and in person. I have gotten bad news and good news the same day as scans, or days later. There is no pattern. I would just rather have the news at home, not alone in the damn Dr.’s office, then to be sent home crying, just let me cry at home. Then again I know she’s also incredibly busy and it’s pointless to be upset before you know.This is agonizing and my brave face has come off tonight.

illimae

Kikomoon, I hate the wait too, so many scenarios but even though waiting is hard if often found it a bit better that I didn’t get a call right away. Usually a lack of urgency leads to a causal appointment. Also, how do you feel physically? I’m more relaxed about it if I have no new symptoms or pain.

KBL

kikomoon, I’m sorry for the long wait. My results are put in a patient portal usually by the next day. Please keep us posted.

Just saw this on Facebook. So true.

Micmel

the wait is torture. They should have to report results within a set certain time period my oncologist has given food and bad news over “in person” never had news over the phone that I didn’t call them for . But then again I always made sure they knew I would be calling for them and to be ready , depends on how fast they are read by the radiology department. The whole conveyor belt is ks

Micmel

very true KBL~.

Showing up for pocket duty tomorrow if anyone needs any.
I’m upset about rabbit. I used to love her old avatar the one that has all those running rabbits. So cute. She was a precious person. May her soul Rest In Peace.

Micmel

well my son tested positive for Covid again ! Two two times two years. Unreal. He's a sick young. Man. This one is more respiratory based and coughing. Good thing I followed my gut and didn't see him. When will this shit go away?. Let us lead our semi normal lives. It's already difficult enough for us cancer peeps.

mara51506

KBL, I am very much a believer that worry and fear do rob us of joy and good things in life, no matter if BC, other illness or something else. I am a naturally anxious person (Thanks Mom) and my mind will go on the hamster wheel of what if this, what if that etc to the point of tears. I have to work hard to redirect thoughts to a more normal way of thinking. Not so much with my cancer or even covid but other things I worry about. I also try to solve problems like if I am wearing cleats on sneakers for a walk outdoors but have to change out of them. Hard to do even sitting so I got an adjustable shoehorn to swap the shoes easily since I find it impossible to get the cleats on and off easily. May wind up to only be a winter need, but rather have them then not. Walking and not falling had caused much anxiety but I just went out with cleats and still lift my feet a lot as well, prevent tripping. Problem solved. I will never stop being anxious but with a lot of internal dialogue, good music and good breathing, feel better.

Kikomoon

thanks everyone, you have made me feel better. Illimae, I feel fine other than standard mild side effects from meds. I should be grateful for just that and I truly am. Well, the waiting will end tomorrow. I’ve been in good spirits up until tonight.

Mara, in my former life I was a mega worry wort. Now I don’t worry about anything except DH and scans. I know I will be ok, no matter what happens tomorrow. It’s just hard, you all know.

Elderberry

kikomoon: The Wait. The dreaded wait. I had my bone marrow biopsy on Monday. I did not expect instant results but there is a backlog in radiology and it will be maybe ten days before I know anything. I am doing my best not to dwell on the "what if it's" I hope you hear soon and that is it good news.

mara: what you say is so true. BC, Covid, add one's own personal anxieties. Trying to stay on an even keel.

KBL: Amen and I'll try to remember that. I can't let my fears rob me of today's happiness.

illimae

Got tons done in the last couple of days and the cabin is really beginning to look like a home. I am doing the insulation, mostly because I enjoy it, it’s like a big Tetris game, lol. DH is handling the wall panels, it’s very frustrating for him and causes so much cussing, I don’t mind, I just feel a little bad for him. Here’s some progress so far.

booboo1

Mae,

I am SO impressed that you two are doing this stuff yourselves. It is certainly cheaper, but I know the activity is what is so good for you….keep moving girl. You really are an inspiration.

candy-678

Kikomoon- Pocket duty today for your MO appointment. It is cruel to make us wait on the results.

Elderberry- Pocket duty for you too as you also wait for results.

Mel- Hoping your DS gets by easy with this round of Covid. You stay safe.

I too am a worrier--- duh--- I think you can see that from my posts. Cancer. Covid. This is a lot for anyone, but my anxiety kicks in a lot (thanks genetics too--like mara said, my mom and sisters have/had anxiety too).

Today I am doing a webinar from Komen- free. I think I should not dwell on cancer stuff, but I want to hear the new news they report. Usually these webinars are interesting. And in my home. And free.

Micmel

Candy~ thank you. He's in quarantine now for five more days. It's always something. I'm thankful I wasn't exposed. Scary stuff out there now. I'm afraid of it also but I don't want to stop my basic things that I do.

Mae~ I'm Pretty impressed that you guys are doing this together also. Pretty awesome! I've always admired your drive.

illimae

booboo, yes the activity is good but my abs are sore from bending over cutting and reaching, I do it in batches of an hour or two, then a 20-30 minute break. Still, it sure feels good to get this going.

I’m here for all waiting on results too 🙂

Micmel

reporting for any pocket duty.

Do you ever notice your bones hurt worse in the freezing air. It was 24 here last evening and I took the trash outside. Felt like little knives stabbing my bones. Wasn't pleasant ! Can't take the cold (or heat) like I used to. I'm like a terrarium animal being kept at a controlled temperature. Lol.

LivingIVlife

Mae- I don't know how you do it! After 2 hours I'd be done for at least another 2 hours. Especially the bending and reaching. Now first of all my husband and I could never do this together! We can't paint a room without arguing. We can't cook together. I admire your patience and easy going style. The cabin will be great when completed.

Another snow storm coming tomorrow! Getting snow blower ready and the storm chips!

For all waiting for results I am here on pocket duty.

mara51506

Pocket duty for those who need it for sure.

Mae, you are amazing.

Still feel pretty good today. Got laundry happening. Waiting for my giant shoe horn so I can put the shoes on easier, also getting some chicken broth from Amazon along with baking soda. The chicken brother will allow me to find more stuff to include more veggies and things in a soup or just to use to bind my bean incredients together after a quick heat up. Allows me to use less of the queso and mayo and although both are low calories, would like to use less. No salt chicken broth as well. I may also buy different soups and use them up over two to three servings. Planning to walk after the deliveries arrive.

Only other thing keeping me busy are the little money making things I do. My TV plays videos about cooking and I get paid when ads are shown. Another app pays me to listen to music while charging the phone. The only problem is that the only station working is the Christmas music but all these things to help boost my budget a lot and are appreciated.

Sunshine99

Wow, so much going on with everyone. I'm in a bit a funk over Rabbit.

Worrying? Yeah, I get it. I got my CT scan results (mostly unchanged) back almost within an hour (while I was waiting for my bone scan). The bone scan took several days, so that had me worried. Mostly unchanged, too. Don't know why it took so long.

DH and I enjoy doing projects together. We work well together. We were helping my dad with some stuff, like hanging a TV on the wall in his office. We wanted to run all the wires behind the wall, so it involved him crawling up into the attic, cutting and patching drywall, but it all turned out really nice. I like the "puzzle" kind of tasks, like replacing door locks, etc.

Mae, your project is looking great. Nice work!

Mel, I haven't experienced the knives feeling, but it's not that cold here. I just get the neuropathy prickles - more annoying than painful.

To all the rest, I hope today is kind to all of us.

Carol

Katyblu

Good morning ladies! First and foremost, I’m here in pocket for Kikomoon and Elderberry while you’re waiting for results. I also hate and dread the wait. Thankfully my doctor has gotten really good at calling me as soon as he gets the results.

I am in a huge funk right now. My step-grandfather died last week. While we thought he might not make it through the year, he actually died from a fall outside. Thankfully it was immediate and he didn’t suffer. But then that coupled with Rabbit’s sudden death yesterday and I’m just devastated. Not only am I so sad about both, but (and I hesitate to bring this up) I’m also scared now about blood clots and other non-cancer but cancer-related issues. 2022 has not started off super great for me. And I think I finally had my realization of how close to death I am or could be. It really puts a damper on thinking about the future. My DH and I were discussing this epic trip I want to take and we started to plan it…. for 2024. And now I’m just wondering how practical that is….

Mel - I am so sorry your DS is sick with COVID again. But I’m glad you haven’t been exposed.

Mae - Your cabin is looking really good! I think it’s wonderful you and your DH are working together on this. My DH and I can work together on most things but we’ve never approached such a large project.

I am a constant worrier and full of weird anxiety. I told my therapist about six months ago about a random anxiety of mine, my wheels falling off my car as I’m driving down the interstate. I try to breathe through it and laugh at myself.

Thank you all for listening

illimae

Katyblu, I’m sorry to hear about your step-grandfather, hugs.

Working with DH is complicated but doable. I’m all about efficiency in time and effort, he is a spur of the moment, fuck it, we’ll figure that out later type. I’ve almost bit my tongue clean off and if he were my employee, he’d be fired, lol but he’s responding well enough to my gentle task-mastering, so on we go.

Rosie24

(Cross posted with liver Mets thread)

Ok, my biopsy results are partly in. I'm now ER-, was ER+, still PR-, and HER2 eqivocal (2+) with amplification in progress. That's similar sounding to original biopsy which turned out HER2-. I'm wondering what MO will do now, because both Fulvestrant and Verzenio, which I just started are for ER+. I guess the ER flip explains the progression.

Feeling pretty crappy with hip pain going down to top of leg, no appetite, and queasiness. Taking Advil for the hip which helps, but worried about taking too much of it. X-rays were negative forhip abnormalities. I've been reclined on couch or in bed a lot. Seeing PCP about my hip tomorrow.

Kikomoon

katyblu- I am very sorry about your step grandfather. We can all go anytime really. Those of us with MBC just have to think about it more.

Cross posting in Brain Mets thread:

Well my scan results were not good, but they did not tell me to go get my affairs in order yet. CT scan is stable. For brain MRI,I have three spots that have grown by a millimeter. My MO said I have options. I can stay on current treatment and we can scan sooner next time. Or I can switch to Enhertu. She talked to the RO and he said we can “re-radiate" those spots. I don't know what that means but she said it was not gamma knife. She will ask him why not gamma knife but we think it is because the number of original Mets to the brain.I HATE this disease.

I hope this doesn't get me down too much. I'm going to try to go about life as normal while still wrapping up some loose ends and deciding what's next.

candy-678

Ok....

Rosie- So now ER-/PR-/and HER 2-. Or being HER2 equivocal means HER2 Low? How about thinking towards Antibody Drug Conjugates? Or meds for triple negative folks? I need to read up on these, so confusing to me. When do you see MO about what he/she is thinking?

Kikomoon- Ok... Your MO says you have options. Hang onto that. My prayers are with you as you make the next decision.

Chicagoan

KatyBlu-If you can swing it, take that epic trip now. That's what I've been doing. More than anyone, we don't know if we'll be able to walk in two years or even be alive, so do it this year if you can. I have started getting travel insurance just in case but I realize I can't live scan to scan. I need to live now and make plans for this year-not two years out.

Moderators

Sending hugs to all you amazing women !! We're here for you!