My Husband, My Life, My Love, My Family, My Cancer
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In Rosie's pocket and Mae in yours while you wait for results!
How's everyone doing?
I had labs yesterday - thank goodness my WBCs and ANCs finally went back up! I think that flu knocked me down quite a bit.
My CA15 has gone up :-/ My MO thinks it is either cancer progressing, inflammation from the flu, or because of the break I have had from Ibrance (about a month off)
We are doing a wait and see approach since I am not in any major pain. Following the subjective and the objective measures.
Today I had my first Zometa infusion. I took a valium and then had a little medical marijuana afterwards. I am grateful to these medicines to help me get through times like this one today. I was a little anxious and almost didn't take the Valium but at the last moment I realized I was anxious, and decided I'd rather not struggle and feel the discomfort. I am glad I made that decision!
The nurses were great and the infusion went well. I also had a lupron shot in my right upper butt muscle.
Now I am free from any testing for 3 weeks! A break!!!!!!!!!!!!! YAYYYYYYYYYYY!!!!!!!!!!!!
Philly is eerie. It is like the streets have been taken over by zombies (lots of people with drug addictions and homeless with mental health issues). Today I walked by a man on the way to the oncology center, he shouted at me, "Its the end of the world!!!!!!!!!!"
Very exciting!
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Rosie24 in your pocket with brownies.
Philly my acupuncturist closed her doors today. She has a family. I am so sad, but I understand.
Waving hello to all. Miss hugs from my grands and DD.
Tanya
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Philly~that sounds like a strange encounter! I can only imagine a huge city shut down. Like that old movie escape from NY. You may be too young to remember that movie with Kurt russel. It’s eerie to even watch tv Chickens squawking. Nothing concrete because no one knows! l
Hi Tanya! 🌷0 -
I too find it strange to be on the street. Usually there are tons of people walking my neighbourhood but there are not many. Some hiking trails had to be closed as well because people were not following social distancing rules and keeping 6 feet between them. The only people who should actually walk together are people from the same household. Shaking my head because at least in my city, it is predicted we will hit our peak in 2 to 3 weeks. How many will be affected is anybody's guess and by not trying to be smart about it, we will wind up like italy or worse. People can get germs, even outside.
I also watched a good video on how to handle deliveries or groceries when you get home. Similar to what Sondra has mentioned that she does.
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As for me, I will follow what this fellow says to do to lessen my odds. I usually don't touch my face now unless hands have been washed anyway, even at home but this will help keep me safer when I do get deliveries and/or groceries. I do have a couple of old bottles of rubbing alcohol 99 percent and also bleach so could make a bleach spray to put on a handkerchief and wipe things down. Probably a good thing to do all the time, not just now.
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Morning all.
Rosie- Pocket duty for Friday scans.
Hi Philly. First Zometa infusion? Were you on Xgeva before? With the bone mets I would think you would have been on one or the other. I use Xgeva.
Not much going on here--duh. Will walk again today on treadmill. Visit with you guys. Read. This is getting tiresome.
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Just placed my first instacart order -- lots of things out of stock and forget paper products. and we are getting texts about substitutions of items we wanted, but that's okay. I think this is the way we have to go -- grateful that we have this service where we live (DC suburbs). I got up early today and was going to go to the early morning hours at the grocery -- I had my own bags, a pair of gloves, and a mask. Started driving there and freaked out about going into the store. My DH doesn't want to go to the store either -- he is a diabetic, also over 60, so also high risk. So came back home and did this order. I think we are set now for at least 2 weeks, maybe a little bit more.
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Bev, grocery delivery will change your life., seriously. Really helps cut down on the impulse buys and junk that finds its way into the cart. Our delivery guy here hauls it all the way into our kitchen even and it's great if you have heavy things in your order. However, I will admit to having a box of pop tarts in my cart for next week, taste of home and all!
Waiting at the hospital now for my drugs, still only saw an adjacent person and not my MO today and then only for five minutes. Next appt is by phone and probably the ones after that, they are saying next ct likely past 8 weeks. And that was that, though everyone seems a bit on edge and the injection nurses seemed to have agency nurses from other places. Oh, and I'm no longer on xgeva at least after the next one I think, so 6 monthly. Somehow for all this shifting around I'm still spending 4 to 5 hours trundling around and waiting for this and that.
Phill, I find that incredible and kinda cool!
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candy-678 and anyone else who might need a Shopping Angel:
Share for anyone who may need our services!
Shopping Angels is a program designed to provide services to those populations deemed especially at-risk for the novel COVID-19 virus that is spreading throughout the United States. To help ease the uncertainty, anxiety, and fear surrounding this pandemic, we are volunteering our time to personally deliver groceries or other shopping necessities to those who may prefer to stay within the safety of their own home at no additional cost.
This means that our volunteers will go to the store (sometimes several different stores) to get the groceries you are in need of! Upon delivery, you may exchange physical cash or electronic payment for the amount printed on the receipt.
You can request services OR sign up to volunteer using this link: https://docs.google.com/forms/d/e/1FAIpQLSd5FbvXqx...
My comments
I used this service over the weekend. The shopper asked me questions while shopping for me by sending photos of products if there was a question. He went to a couple of stores to complete my list. He delivered to my house and kept his distance. He was wearing gloves and a face mask. And he wasn’t allowed to accept tips. My experience was great and so I wanted to share this info with you all
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I have to go out today and get my medicine. I’m keeping up on my local news and am seeing surrounding towns now reporting cases. We haven’t had one yet in our town, but let’s face it, it’s only a matter of time. This is so freaking unreal. I’ve about had enough of the uncertainty of it all. Us cancer patients live this way enough on a daily basis. Adding this level Of stress to us cannot be a good thing. I feel like anxious and like I want to scream from frustration and all from wondering when this covid crap will take leave!!!! It’s looking pretty badly in the ne. It’s covering our entire area really and slowly spreading outward. How many people are going to get this is going to be astounding. Just the severity perhaps will differ. But. I don’t really want to even go outside. So ridiculous!
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I may need to get some things myself from the store. I am going to try to remember that even while I am at home, I cannot touch my face at all unless hands are washed. Everything we get can be contaminated and it would behoove us to just keep that in mind. Wash hands always, even at home. That and staying home except for essentials are what will protect us most. Masks overall do not really help much if you are not sick unless it is a heavy duty kind. What a mask does do though is protect others if you are out coughing, sniffling etc so you don't leave your own droplets. People should wear them if they have a cold etc, not talking just about covid
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Philly I see the homeless people in Tampa. The beggars at the stoplights I used to give food or money now I don’t open the window. Sorry and sad. I get zometa infusion every three months and faslodex shots in the rear two of them once a month. I got my injections Tuesday.
Candy I feel like everything is on repeat daily too. Today my husband was able to get purell wipes and hand sanitizer. We were spraying alcohol on door handles like when I went to DR office, elevator buttons. I don’t go back for a month and have a Pet at the end of April.
Mel I watch news in the morning and then again at night. My mother siblings children and other close relatives are in NY. If I think about them I feel as if I’m about to faint so I water plants, visit our BC living room, help my grandson with his virtual school as a distraction. My mom,86 with asthma and chronic bronchitis says oh NY is hit hard.
Mara they told us masks are for if we are sick. I think they’re lying bc they don’t want us to take the masks from health care workers. In S Korea where they actually are decreasing cases and deaths everyone’s wearing a mask. They were wearing masks before corona virus too. When I went to Hawaii all the Asian people had onmasks. They don’t want our germs. I have masks from a few years ago with changeable charcoal filters. I do wear them now when I go out. When I went to my Dr appt all staff had on masks and the Dr.
Sondra I may try the delivery service I never used it before. I used to enjoy food shopping 🛍. Not anymore scared.
BevJen I understand being scared to go in the store. I tried an out of the way store I thought the college students went home but there were many in that store. They had napkins but no TP. I’m always looking out for my daughter bc they live across the streets 5 kids. They’re on their last roll.
Has anyone heard from Frisky? She’s in NY. Praying she’s safe healthy and loaded with supplies.
Dodgers girl thanks for sharing shopping angels I may use them for the next order but we’re pretty well stocked up with everything now.
Waving 👋🏾 Booboo Mae Grannax Divine 50sGirl Moomala Shetland Rosie Runor Big B everyone else that I cant remember.
Tanya0 -
I have to admit that Covid-19 has me very worried.
Right now, my state is on a “stay at home” order but we can still go to banks, gas stations, grocery stores, and lots a restaurants offer curb side pick up and/or delivery.
But my worry deals with the next step— when restaurants have to close. Right now, it is very hard for me to cook meals. Between hip pain, back pain, and shoulder pain, I can only do tasks for about 10-15 mins before getting nauseous due to pain. I fixed a real dinner 2 nights in a row and paid dearly for the effort. If I can’t get to-go food right now, it will be a real issue. Really worries me. I used to make everything from scratch, including grinding wheat berries to make bread. Now reheating something in the microwave can be sooo painful. As Micmel says, we are dealing with enough with cancer without having to worry about getting a virus from the mail, from a store, from a neighbor, etc
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Dodgers- I too am very worried about COVID. I don't cook--just me at my home and I never liked to cook. I eat easy foods--spaghetti, frozen pizza, etc. And I am able to prepare those. My worry is the lack of groceries and paper items. I see my pantry slowly dwindling and worry that there will not be items to restock it. I have TP for now, but when it is gone what does one do?? Barbaric. Cannot stay hygienic. And with the cancer, it is all too much. I am sorry you are having so much pain and difficulty. This is so hard.
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My hands were sanitized about five times and my temperature taken three times at the hospital today - I still came home and immediately put clothes in the washing machine and got into the shower to hose down. Oh, and bleached the soles of my shoes and cane, wiped down everything that had been in my pockets, etc.
I found a no-sewing machine required mask pattern on YouTube I think I will try this weekend. Need something rather than nothing the next time I need to do the hospital (next week to pick up more letrozole). I can hand sew, and I have various old clothes in different materials I can cut up to make something. You can only watch so much Netflix!
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I have a mask myself, I have just read and heard from many sources that the masks don't really protect, that clean hands and not touching the face have the biggest impact. I can't say that we are not told that to conserve them for health care. I am not wearing mine when out because I feel like I cannot breathe and too hot for me. I don't go out a lot, I do wash hands a lot, beyond that, it is the luck of the draw whether I get it. I do take it seriously and only take exercise outside by myself. Not seeing my family even to try to flatten the curve.
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Finally got the call and brain MRI results are good. 2 previously treated spots are stable, no evidence of cancer in the Craniotomy area and no new spots.
Mentally, it’s been a tough few days. I’m not my usual happy self, I haven’t laughed in forever and being hungry and unable to eat makes me cry. Just hoping for improvement soon.
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Mae~I’m pleased nothing new and stable. But I’m sorry that you’re struggling so much. Everything right about now sucks really badly. I only eat once a day and I hate even the thought of what I can gag down. Because my Taste buds suck. I hope soon you’ll be back to your food loving self. And laughing while doing it.
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Philly: I had to laugh. I just posted on another site how eerily quiet the streets are in my neighbourhood. Silent as early Christmas morning. When I shop I thank the clerks/cashiers and wish their loved ones safety and health. No zombies in this 'hood. The few people I pass all smile though. They always did, but the smiles seem warmer. We are all this together.
I saw the Doc video about groceries. I am not that hyper-vigilant but I am less casual as well. And -- where do you find wipes and sprays these days? Our stores with their one or two items per customer still can't keep TP, wipes and sprays on the shelf. I need to wear mittens like they put on babies to stop scratching their faces with their tiny nails. If the average person touches his or her face 23 times in a hour, I probably hit 35. Good thing I stopped biting my fingernails some years ago. I made a solution of bleach and water 1:10 (it might be 1:9) and used an old spray bottle. It is my back up.
I have a small stash of those blue papery masks. I don't use them going out. They are in reserve in case I or my husband falls sick. The sick one gets the mask. Although it is unlikely if one falls ill the other one won't. We still have a double bed. Would a king size bed count as social distancing? We only have the one bedroom and one bathroom in our tiny little bungalow. The other bedroom in piled high with my doll making/jewelry stuff and is totally unsuitable for someone to sleep in for 2 weeks. My husband has MS, I have cancer. What a pair to stand back to back, shields up, swords drawn to save ourselves.
Blessings
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Illimae - FANTASTIC news about the MRI results. I know the slow progression is discouraging, but this ought to give you a shot in the arm anyway.
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Mother Hen says Micmel, pease ask your pharmacy to deliver your medicine. Sondra, please do not have the delivery person come into your home. Tanya, I agree that the reason they say not to wear a mask is that they know there are not enough. My nurse friend says to wear one. If you don’t have a mask left over from port access, a home improvement project, or something, you can make one!
Illimae, I’m so glad to hear your scan was good. Now we need to get you back in shape to enjoy it! Have you talked to every doc that could possibly help — ENT, Palliative, Occupational therapist (swallowing) etc.?
Elderberry, hobbits with their weapons drawn can be surprisingly fierce! Is there any way to start working on bedroom #2 just in case you need a room for isolation? In my family of three we each have a mask for going out (me only to cancer center) and two spares in case someone gets sick. (The masks are left over from port access and a home improvement project.) I am getting more and more nervous about my adult kid still going to work at the little restaurant. And the thought of washing clothes and shoes and stuff after any outing is too exhausting.
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ShetlandPony: I could probably carve out a spot on the floor for a mat. It is a really drafty cold room which is okay for crafts and maybe rolling up in blankets to sleep but it would be hellish as a self-isolation room. Both the living room and the bedroom have TV's and the real bedroom is closer to the bathroom. Let's hope that decision doesn't come to pass. Are restaurants still open where you are? Ours only cook for take-away. Even so, if they are closed, there is that proximity to other cooking staff who go home and out and about.
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Hmm, yeah, in that case I guess I would put the sick person in the bedroom and have the well person sleep on the couch. May it never become an issue, and you two just enjoy cocooning.
Exactly, even contact with the other staff raises the risk for the whole family. The small place my kid works has half-capacity allowed for dine-in, but most of the business is now take-out. I want to support them by ordering something, but I also believe cooking at home is safer. I think I will start to do what is recommended for travelers to developing countries: Have cooked food served hot. So I will sauté vegetables rather than eat raw ones, etc. I wish we had our veg garden up and running. We are afraid to go shop for lumber to make a bed. Perhaps part of my new flower bed should be edibles. I wish I knew where the box of seeds ended up when we moved! Still not all the way unpacked. Is anyone else growing food?
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Mae, Glad to hear your results were so good! I’m sorry that the eating issues are hanging on. I’m sure your lack of nutrition is rough on your body as well asyour mind. With you in spirit 💕
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Elderberry~welcome Back! Good to see you here and trudging along with us in our living room! May you stay healthy from all of this. I am glad, I still only know one person with this corona virus. My aunts daughter. She went visiting in Spain after Christmas and came home with what she thought was a cold. Then it became closer when she was tested. So mother and daughter are in the same house quarantined away from each other so my aunt (who has emphysema) doesn't get it. Crazyyyyyy stuff here....
MinusTwo~welcome back! Good to see you. As welll 🌹Shetland~ it was my medical marijuana medicine that I had to stock up on. Or cvs would be arriving at my door real soon If it was my ibrance. But I love the mother hen comment. 🥰 adorable woman you.
Hello to BevJen... Betrayal...Sondra...good point about Frisky. Hope she's ok! Also Moomala shes NYC also too isn't she? Grannax? You doing ok ? Simone Haven’t seen you either Runor Okay enough!!Tanya. Hello sweetheart. Always good to see you! I thought about you visiting NYC when you went on television, good thing it wasn't near this time!!
Rosie~ Good to see you as well, hope all is healthy with you and yours! 🤗
Hello Mara and Candy!! Hugs to you too.
Minnie hope you're ok my friend.0 -
Mae I’m so happy for your good results. I hope you get to eat good buttery delicious lobsters and steak and cake and anything you want with the enjoyment of a famished pirate-real soon baby you’e been through the mill.
Tanya
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I must admit that I am still struggling not being able to see my family. I know we have to isolate but it is hard knowing this will likely last for months. I do message them but it just is not the same. Nothing can be done I know, I will just have to manage my stress and not bother being sad. Being sad won't make this quarantine any shorter and will just leave me open for sickness.
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Illimae— great news on MRI results!
Hoping the food part gets resolved soon.
Hugs sent to yo
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Mara,
I can relate. Yesterday my sister-in-law and niece dropped something off for me on my porch but didn't even ring the doorbell or call me so I could have at least waved at them. It was such a strange feeling to know they were there and I didn't even get to see them. This social isolation is especially rough on those of us who live alone, I think. Might be even worse though if we were living with someone and we weren't getting along. Hang in there. We'll get through this.
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Mae my friend I am both so happy for your good brain scan results and also I feel your pain about not having experienced great joy in a while. This cancer stuff can just be so draining and suck the life out ya at times. You have really been through the ringer this time around. I am holding visions of you at some point when the energy arrives to have a good belly laugh and maybe do a little dancing around the home to one of your fav songs. I agree with Rosie, the nutritional depletion aspect can do a number on the psyche. I love the show Naked and Afraid. People are really putting themselves to the test and so many folks really starve their bodies. You can see the light in their eyes start to dim by usually day two or three. Nutrition and food and protein is so important for mental health. I wonder if eating a milkshake might taste yummy and give you some calories and fill your belly?
As far as COVID19 goes, well I feel like today my parents and I did so many things that would be considered “bad” in the eyes of many. I got a slice of pizza from the corner pizza shop (couldn’t resist!!) and they all were wearing gloves and so kind!!! And then my mom and sat outside at one of their tables and pet some dogs. And then my dad came home from our local produce market where he bought some groceries, one of them being a fruit salad. So fresh fruit cut and raw and handled by someone...
We are either getting this virus or not, I am not sure how much to reign in the antimicrobial strictness. I want to live my life and not be insanely paranoid but of course I am feeling paranoid about all these things! Trying to relax my mind.
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