My Husband, My Life, My Love, My Family, My Cancer
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crazy pants woman.....lol
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Well, we’ve got bathroom walls, yay. We are having 3 friends come for thanksgiving week, so some privacy was needed there. They’re our regular couple from Louisiana and one more, everyone has been masking, distancing and avoiding socializing for almost 2 weeks, so I’m comfortable having them.
Working out insurance issues again. I had scans booked for 12/1 but my Medicare and Medicare advantage plans start that day, so we’re rescheduling so pre-authorizations can be done. Then on 1/1/21 my retirement system will use a new Medicare advantage plan, so changes again but I’ll be prepared this time. The good news is that with the retirement advantage plan, it looks like practically everything is free, in network or out, office copays, scans and prescriptions are supposed to be cheaper too, although I’ve been super fortunate to have it so good already. I think they’ve spent over 5 million on me so far. Great for me but disappointing for healthcare in general.
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Moth,
They used to call me “Bossy pants” at my old job when I used to coordinate the “back room” for FDA inspections. I guess I was a bit bossy, but boy did that back room hum with activity! So you can be “Crazy pants” and I’ll be “Bossy pants” and together we’ll make them all have a good chuckle!
Mae,
I can’t wait to see the cabin all done. No doubt it is going to be so wonderful and cozy.
BevJen,
I truly believe that gratitude and giving back are the keys to managing this disease. I have thought about keeping a journal for awhile now, so thank you for your post. It was the push I needed to get started.
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Moth- In your pocket for your lung biopsy.
Mae- Woohoo for bathroom walls!!!
I do not journal, never have. Not a diary as a kid even. But I do just sit sometimes and say aloud (I live alone and my cat doesn't mind) what I am thankful for. Kind of a conversation with God, and also just to hear me say it aloud. And I am thankful. I have always been single. My mom used to say-- when she was alive-- that there is worse things than being alone. I get what she meant. I could be in a loveless marriage. Or be in an abusive relationship. So I am thankful for what I have. My house is peaceful, even though it is lonely and boring at times.
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Morning all!
Candy, I’m glad you’re about to find things you’re grateful for even in loneliness. I’ve thought “things could always be worse” as long as I can remember and it has served me well but it was hard to summon that spirit while I was starving after brain surgery earlier this year. But, things got better, they’ll get better for you too
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Candy, glad you could find things that made you feel grateful. Mae is right when she says that can pull us through. Used it a lot when I had whole brain radiation and I was super depressed.
Mae glad you got your bathroom walls.
I am washing all of my bedding today. Since I only have a tiny portable washer, can only go one blanket at a time. I did think I was terribly clever because I have a heating rack I can use to start the blankets to drying at the same time as the tumble dryer. Should knock off a lot of time. I am determined to get them all done.
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Nothing like fresh clean sheets Mara and actual walls in the bathroom Mae!
Moth, hope the biopsy goes smoothly and they can get to the bottom of the new met.
I had my first proper counselling session on Zoom today, it’s so long since I spoke to anyone one about how I was feeling I just wittered on and on! But she was lovely and realised that I think. 🙈.
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Cross post----
Was thinking today, about the Covid vaccine.
Have any of you mentioned the vaccine to your MO? Should we get it with our immunocompromised status, our various different treatment meds?
I messaged my MO nurse today. She said they have not discussed it yet.
Just wondering. Hopefully it will be available to the high risk people in the next few months.
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I’m kinda hesitant to get it. It was made so fast. That just worries me. I just hope it really works. So now we have to have. Two shots. ? I think they said it’s two shots. Must be kept cold. Three shots if you count the flu shot. It’s all just so new with this covid thing. How do we really know? So it will never be gone from our environment? Never go away?
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I tired out about halfway through the blankets. Using the heating rack tent did practically dry the blankets I did do. After a nice break, I will steam the others not done and toss in the dryer to remove cat fur.
I really need to start listening to myself about walking first thing in the morning. I am so much less productive when I don't. Less surveys done, less housework, just feel l ike a puddle of tired. Oh well, my own fault for not doing the morning 20 mins on treadmill or around the block.
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Mel - it could die out, if it can't replicate enough in non-vaccinated hosts. I believe thats what MERS (middle eastern respiratory syndrome) did a few years ago. It will depend if it mutates to survive and becomes endemic, like the flu. For example, the H1N1 that caused the 1918 flu is still around, but it mutated to become less deadly.
I posted to Candy's question in the Ibrance thread, but they are starting to gear up seriously here, and if my MO doesnt bring it up in two weeks I will be surprised (and make sure to ask!). It's not a live virus vaccine but I wonder how many cancer patients did they inject with this in the trials? Any? And how does that interact with everything else I am taking? I suppose that is what the safety reviews are for. That being said, almost a little glad they are vaccinating the over 70s and health workers ahead of me!
Alternatively, I wonder if it would be easier to get the jab at the cancer appointment so they can keep an eye on folks afterwards just in case.
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Not mentioned to my MO but I’m gonna wait and how the general population is affected first. I’m not just hesitant, I have a fair degree of mistrust in gov, for profit companies and humans taking shortcuts.
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Mel- I think the vaccine will be ok. It went thru the 3 phases of clinical trials and is being manufactured by reputable companies-- Pfizer (maker of Ibrance), Moderna, etc. And the FDA will review it. Yes, they are saying 2 shots-- a booster in 3-4 weeks from the 1st one. Didn't we have booster shots as kids with our childhood vaccines? From what the experts say, 75% of the population will have to agree to take it for the Pandemic to be under control. I would hate to have a perfectly good vaccine, but still be in this mess because the people refuse to take the vaccine. It is everyones personal choice, but I want to take it and try to have some semblance of life for the time I have left.
Sondra- As far as the cancer center having the vaccine available, my old MO didn't even have the flu shot last year. I was told to get it at a local pharmacy. Maybe this vaccine will be different. They are unsure of how this vaccine will be distributed here in the U.S. --- doctors offices or local hospitals or Health Departments or designated areas (like the testing sites).
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Also, the people that participated in the clinical trials are doing ok overall, I guess. Or we would have heard about it. And they are saying they will offer it to the frontline healthcare workers first. So if all the nurses and doctors keel over, we will know not to get it.
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I would get it , if it’s proven to be okay. I wouldn’t never want to get it. But like Mae said. It’s tricky sometimes trusting everything he government says to be so. No so sure I’m with believing what they say. To many layers to *fu*k things up!!
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Mel- I agree the Government is weird. But I think of it that this is Worldwide, not just our screwed up U.S. Government.
I just want hope that this vaccine could give. Hope for some sort of life except for hiding in my house. And, hey, I have MBC- terminal- so might as well take the chance with the vaccine. At least if it kills me my family could be near me in the end, not like dying alone with Covid. And I could have a funeral, not like now with Covid and limits to the amount of people allowed at the funeral home.
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According to my friend Lori who is working on the JNJ vaccine, theirs is only one shot, but the virus is live. It’s based on their SARS-COVID vaccine that’s already in existence, and tweaked to kill the current COVID strain. So maybe a good question for our MO is which vaccine is safest for us.
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Booboo- My MO nurse said that they do not advise to get live vaccines of any kind. What is examples of live vaccines??? I read the Pfizer and Moderna ones are not live, the others are. I wouldn't think we could request one kind over another, but whatever is sent to our area for distribution. But you would think they would have the non-live one for immunocompromised folks. We will have to see.
If you guys ask your MO, please post what they say/advise. Just wondering what the oncs are thinking about this for their cancer patients.
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my Oncologist did mention that covid would be effecting us until there was a vaccine. He seemed confident that they would have one and that would be the answer to things returning to normal again. He didn’t seemed worried for me. He spoke a matter of fact. I’m sure just wait and see what the trials come out.
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Candy, I’m with you, I want my life back. I am willing to take a (Possible) small risk and be vaccinated as soon as possible so I can take advantage of whatever time I have left. I want to visit with people, I want to go places. Just like I have been willing to take the risks of cancer treatment for a chance to live longer. So far so good.
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I'm getting reminders on my patient portal to get my flu shot and the shingles vaccine. I had my flu shot in March of last year. I did ask my MO about it and she said as long as they're not "live" vaccines, they should be OK. I'll see her again in a couple of weeks, and will probably clarify with her which vaccines I should get.
My last flu shot (it was my first ever) was on Friday the 13th. Maybe not the best choice of dates, but it was convenient.
What do you all think of the shingles vaccine? Shingrix, I think it's called. I've never had that one, either. I did have chicken pox as a child.
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I got chicken pox as a child. Got the flu shot this year and I think since I’m 50 I have to get the pneumonia booster. They always want me to have that one also
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MMR (measles, mumps & rubella) is a live vaccine. Zostavax (the first shingles vaccine) is a live vaccine. Shingrix (the second & newest shingles vaccine) is not a live vaccine. The influenza vaccine is not a live vaccine. Both the pneumonia vaccines (Prevnar-13 & Pneumovax-23) are not live vaccines. Both the Pfizer & Moderna vaccines are not live vaccines - they are mRNA vaccines. Very few immunocompromised patients were enrolled in the trials so there is not much to go on.
The unique problem with cancer patients is the course of treatment we might be on. Since the two COVID vaccines are not live, the risk of developing the disease is very very small. However, because we might be taking drugs that suppress the normal immune response, particularly the steroids like dexamethasone & prednisone, we might not be able to mount a robust antibody response as compared with folks who are not under treatment for cancer.
I think in our case, it would be prudent to maintain mask wearing & social distancing even if we do get the vaccine.
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Hi ladies! I've been reading along, and this is my first time posting in this thread, because wow! is this a busy place. I'm not sure I'll be able to keep up with everyone, but I'll try.
I will probably go ahead and get a COVID vaccine when they become available in my area...but I think it will take awhile for them to get to my small city. The advantage to that is hearing how other people do with them. If nothing else, I feel like the vaccines will be popular here and will help make the community safer.
Sunshin99 - I got my first Shingrix vaccine the same day I got my flu shot in October. So, I had two sore arms and felt a little more run down for a day or two. I go back for my second Shingrix shot in early December. I had the chicken pox as an adult - got them from someone with shingles - and brought them home to my son. By the time my daughter was old enough, the chicken pox vaccine was available. Recently, my former coworker had shingles recently and I DO NOT want that. She was just miserable and is having lingering effects 2 months later.
moth - I hope your lung biopsy went well - that was really lucky for you to get in on a cancellation. I'm also curious which true crime podcasts you listen to.
Mara - your walking inspires me and I'm trying to get consistent about getting on my elliptical. I think getting that early exercise would help make my days more productive. I'd rather walk outside, but that doesn't happen often.
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FluMist is a live vax so that's a common one we need to stay away from.
I'm not even thinking about the covid vax yet. Canada ordered a whole bunch of various vaccines & I will get it when it's recommended - I'm just not holding my breath. I think it will take be a while yet till it gets to me.
Also, assuming that chemo pts possibly don't seroconvert sufficiently well, it would mean that we still are at risk, until at a good chunk of the people have it. I haven't had shingrix but dh did. It just never came up for me but dh's dr recommended it to him and he did it. I did do a huge vaccine check, titres and some boosters when I was going into nursing school in 2018. I got the pneumococcal vaccine then.Oh & remember tetanus needs boosting every 10 yrs.
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Jhl- Thank you for your informative post. Good point about not being able to "mount a robust antibody response". My circle of friends say they are not getting the vaccine-- mistrust of the system. They are also anti- maskers. Some even "hoax" people. I will get the vaccine when it is available and my MO says ok for me. But I still think I will have to mask and social distance if the majority of my community does not vaccinate. Will this ever end??!!!
Good point, Shetland. We are "willing to take the risks of cancer treatment for a chance to live longer". We do that every day.
Rainy here today and in the 40's. Good type of day to stay in-- Saturday and yucky weather. Read. Watch a movie. But that is my normal routine these days so not too fun or cozy.
Hope all have a good day.
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If the FDA approves of a vaccine, I plan to get it. My MO's position on most health issues is do not ignore other health concerns. I have gotten a flu shot for many years, which I think has protected me well. I have also gotten two different kinds of pneumonia vaccines, and both kinds of shingles vaccine.
I believe in the science. Plus, I don't think Pfizer or Moderna or these big companies would put themselves at risk with falsified/incomplete data, and I think it's an issue of if I don't get the vaccine, I don't get normalcy back. Candy, I also agree with you that we may be masking for a long while because I think one of the unknowns is whether or not this will have to be taken yearly or if the immunity to the virus will be sustainable, like some vaccines.
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I plan to eventually get the shot, I just want it to have been in circulation for a time period. I have enough going on for something to interact with something I’m taking. Or allergies and etc.... it’s so new. Id like to hear of some side effects. I don’t want to be worse off then before. Not knowing how this virus behaves is scary. But I agree , I used to work for thermofisher and was in the billing department. I saw all the back up and paper work with official fda compliance’s with the file. ( for ibrance trials as well) Fisher clinical services is where I was within the org. They have hoops to jump through like mad. I just want the vaccine to be effective. If we have to get it yearly like the flu is what I want to know. ?
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SeeQ, nice to meet you. I amGlad to hear you enjoy hearing about my walking. I enjoy it too. Already done 3 short walks today before, after breakfast and after lunch. All outdoors. It is grey and gloomy but no rain. Little chilly but that is quite alright with me. Beyond that nothing much except regular laundry. I fully agree with you that for those of us who find it hard to get started on what we want to do exercise wise, it is probably a good idea to do it first thing before even thinking about what we might start doing instead.
Other than the walks, surveys, bit of laundry, not much going on around here which is fine by me. If a vaccine becomes available for covid I would take it. I would probably still wear a mask, possibly forever. Not sure I would feel comfortable any more without one. Who knows.
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Im cool with wearing a mask or whatever for however long, I just want to have the vaccine so I can feel like my risk is lessened in either getting it or getting a bad case. Not to mention a vaccine would mean more things/places could open up and life can return a bit to what it was with freedom to move about and go on vacation etc. The real challenge now is to ensure people don't take their eye off the ball and drop defenses/get lazy, or if after a lot of people are vaccinated, folks get angry again at the mask brigade. I hope there will have been a cultural shift an acceptance of masks, at least now in the West.
Not much going on here, rode the bike and just made a spinach pie with filo for dinner. Having a very, very small gin and tonic while it bakes, and looking up potential Christmas dinner recipes.
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