My Husband, My Life, My Love, My Family, My Cancer
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Sunshine, I did have a wedge pillow when I first got a terrible bronchial infection early on in my chemo. Between that, puffer and tylenol I was able to get some well needed sleep unless the sleep number is more desirable. As far as my answers, they will come, will be upping and going to two sets of exercises throughout the day. I already have and walked today. MRI will probably scheduled soon as usual anyway so I will find out. Just telling myself to be patient.
I had to laugh because my wellness call turned into a recipe hunt for her what to do with blackberries. She has no computer so found her chicken with blackberry glaze. Sounded decent to me. Cannot escape the food.
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I got a call to come in for a CT angiogram today of my lungs. I got the report already and it sounds like the nodule is cancer and I have bilateral pleural effusions. I'm usually pretty good with understanding the reports but this one is a little foreign to me. It mentions "subtle nodularity along with fissures" and that "Findings are favored to represent lymphangitic spread of tumor." I'm expecting to hear from my oncologist. I anticipate at the very least a medication change, probably to Piquray since I have the PI3K mutation. Not sure what that means in terms of prognosis but I am trying not to speculate until I hear more from my MO.
Sunshine99- I had a wedge pillow and at the beginning of the night it felt okay but inevitably I would scoot down into a weird position so that in the morning I was either sideways and laying flat or scooched to the bottom of the wedge. I have an adjustable frame now and it has helped with this breathing issue but it's still hard for me to try and sleep propped up.
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intolight, candy, rk2020, cookie 54, weninwi, sf-cakes
Thank you all so much for responding to my question about the inconsistency of scan reports. I thought I would be getting reports I could rely on, but I'm quickly losing confidence in this process. How can an MO make an accurate tx decision? No wonder many of us have anxiety.
weninwi
Is your second opinion MO at Mayo a remote process or did you have to go there in person? My MO is not very available and something like that might be useful for me, but I am nowhere near Mayo.
Cookie54
Please post more pics of adorable Daisy. I keep going back and looking at her on her blanket on the boat and it makes me smile every time. My daughter and her family have a rescued Lab who is 18 months old (doctor's estimate) and apparently did not have an easy life before they got her. She is the sweetest animal despite her history and we all love her.
Emac
Fingers crossed that your MO has a good plan for you lung met. Thinking of you.
Hugs to all.
Eleanora
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Thank you, ladies. I did order a wedge pillow. It should come tomorrow. We shall see…
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sunshine99,
I tried a wedge pillow for a reflux problem. I stayed with it for awhile, but finally gave up because I always ended up slipping down. Plus it just wasn't very comfortable. I also tried risers under the front legs of the bed, but my husband was not agreeable with this effort. What has worked best for me, when symptoms were the worst, was sleeping in a recliner with my head somewhat elevated.
eleanora,
Yes, my visits with my second opinion Mayo MO are remote. I was first seen at Mayo in person for a second opinion when I was diagnosed stage 1. After my stage 4 diagnosis in 2019 I called for another second opinion appt and was told I would have to register as a new patient. I requested remote appts and they obliged. It took some jumping through hoops (lots of phone calls), but Mayo was generally helpful in getting it all set up. They handled all the record retrievals (they the use Epic record system). However, I don't know if they still offer remote visits post covid? The video visits have worked well (every 3 months after my scans) and I like my Mayo MO. She is usually on the same page as my local MO re treatments, but she is just more thorough, far more informative, and takes time to explains things. So far Medicare has paid for the visits and I haven't gotten a second charge from the Mayo radiologists when they read my scans. If Medicare stops paying, I'd private pay as it's worth it to me.
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Emac Sorry to hear your CT had some findings, cancer stinks! It is hard not to speculate but you’re right to wait and see what MO has to say. Hope you hear from MO quickly so you’re not hanging . Hugs
Eleanora Glad Daisy’s pics made you smile and yes I will post again. Sounds like your daughter was lucky to get a little sweetheart too. Labs have a great demeanor, enjoy your grandpup.
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Another wedge pillow refugee here. I have the big triangular one you can flop into different geometries and used it first for the DIEP and then now for lumbar relief. Honestly, the thing is so big I felt like I was sleeping in the middle of the bed and with the lumbar support I just use it for an hour or so end of the day. Maybe a smaller wedge pillow would have worked, but ultimately for sleeping more upright, I used a reader pillow (those heavy things with arms) and stuffed a bunch of pillows in there and that has worked best.
Wenn - if you don't mind my asking, how much is a cash-basis second opinion through Mayo? I feel like I should start lining up a second opinion option (or at least get an idea of who/how/where to get one) when there is less stress to do so, though any treatment change here goes through MDT anyway.
emac - I suppose its good to know where the breathlessness is coming from but frustrating that its not something like an infection but cancer. I hope they can get you taken care of quickly and you can feel better soon. One day at a time and all that.
Had a really nice day yesterday seeing my friends and had an entire pint of beer at lunch (thanks drug off week!) at our favorite lunch pub. City is just rammed with tourists and the prices at Borough Market have reached stupid levels to the point that Im pretty sure Whole Foods is cheaper now. I think I have to go in on the 19th for something but that ought to be my last trip to work until after the summer holidays thankfully because everywhere is just nuts!
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Emac, I am sorry about your findings as well. In your pocket for the scan and steps ahead.
Sondra, glad you had a good time with friends on such a nice day.
I am having hashbrowns and eggs this morning and taking the bus there. Already done laundry. Will be steaming my bedding down to kills some dust and toss in the drier to remove fur. That's about it for me today.
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Hey everyone. I’m stopping in to say hello. You are all in my heart every day. I’m getting ready to cook a few trays of Spaghetti & White Clam Sauce for the neighborhood annual Pig Roast. Everyone brings a dish and our neighbor and his family do the Roast. I always bring my dish. Everyone looks forward to it because it’s always 😋. DH told them last week not to count on me this year to make it because we never know how I’m going to feel, day to day. Although my neighbor was disappointed he totally understood. But yesterday I said to DH to pick up the clams and other ingredients and. I will make it because I’ve been feeling pretty much ok. So I will check in later this evening with you. Have good day with, reasonably no symptoms and side effects., and pain free.💗🩵😊
💕Barb💕
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Hi, al. I woke up with a fever this morning. Lots of coughing, etc. Temp was 100.6, then went up to 101. Am supposed to contact my medical team if my temp is over 100.4. I took some Tylenol and it's down to 100, so I'll just keep an eye on it.
My wedge pillow came today. Per the instructions, I'm letting it air out and come to shape for 12-24 hours. Am resting a lot today.
Carol
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In your pocket for the fever and having it come down.
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Carol, so sorry to hear you have a fever. I hope you didn't pick up anything from the hospital. Praying your temp comes down quickly and it proves to be minor.
Cookie, Love the photos of Daisy. She is adorable.
I restarted the Verzenio Thursday night and already have diarrhea. At least it is minimal as we are meeting my husband's new friends out tonight. Still having thunder storms each evening too. Unusual year.
Chris
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Chris, sorry about the D but glad it is not standing in the way of the evening out, enjoy yourself.
Cookie, Daisy is a very cute dog for sure.
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Sunshine~ I hope you feel better. Very soon. Get a lot of rest and stay hydrated. Please keep an eye on that fever. Sending hugs and am also in your pocket.
Into~I am sorry that has came back already. How frustrating that is. Having to take something you have to take and you have all this other stuff that comes along with it. Cancer just plain sucks.
Mara,hope you’re doing okay today and that you’re setting and getting some rest. Thinking of you .
Shana~well done on making your meal for your friends. I’m sure it was delicious and it was very nice of you to do that. Glad to hear you were feeling half decent. I like hdsribg about good days.
Mae~How are you? Hope all is good!
Chicagoan a hello to you too. Emac hello hello Rk hope you’re doing good . Goldens , hope youre good also. Tanya how’s the heat? Elenorasending a hug!! Irishhow are you. ? Hope good. Living,hope you’re having a good weekend. Wenin good to see you again. Cookiehug the sweet pup please for me.
Sondra~always nice to see you here. Hope you’re feeling well. Hugs to you. Wrenn,hugs to you too.
to anyone Ive missed I’ll be back. Sleep well.0 -
Sunshine99 - thinking of you with that fever. Please be very careful with it. Tylenol can bring a fever down so mention when you took some to your medical team. It can mask ongoing fever as an important symptom.
I spoke to my MO today and the news is not good. I have lymphangitic spread to the lungs. He wants to see me on Tuesday and go over it in more detail. The urgency is a little scary. The prognosis he gave me today is a few months to maybe a year based on statistical data. I'm reeling a little from that. I have spent time today being sad and angry and crying and now I'm trying to calm my mind until Tuesday when I will get more answers. I know I am being switched to Piqray. It's my intention at this point to come at this no holds barred. I'm willing to do IV chemo again if I have to. I think there is still hope that I can knock this back and get a little more time than a few months. I won't know what the rest of the plan is until Tuesday.
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@sunshine99 I hope your fever is down today. Not just artificially down from Tylenol. If not, I’d contact your doctor and let them decide if this is something to be concerned about or if Tylenol and rest are enough. Hugs.
@shanagirl It’s so good to hear that you had a good enough day to participate in your neighbor’s annual pig roast. I hope it did your soul some good.
@intolight D sucks. I hope it didn’t interfere with your evening plans. I spent 4 months on a trial drug that gave me D 5-8 times a day. Fun times.
@emac877 Your news is disappointing to say the least, but I love your attitude and read your post on the clinical trial thread too. I hope there is someone on BCO that has some experience or knowledge to help you navigate the latest storm. Please keep us update. In your pocket for Tuesday.
I’m on day 4 since my second Enhertu infusion and so far I’m doing ok on the lower dose but sometimes the symptoms don’t kick in for a few more days. We shall see what the future holds. At any rate, I’m not expecting to be SE free. I wanted more “feel good” days and I’m hopeful to get them. My left lower jaw, chin and lower lip went numb on May 7. I think the Enhertu is having a good impact already. Only the chin and lower lip are numb now. The worst of it was the lower jaw and that now has almost 100% sensation. They say around 50% on Enhertu lose their hair and many report they didn’t thin or lose it until they had a few infusions. Well mine started falling out robustly 2 weeks after number 1. I’m almost bald - again. Well, like my husband said…it’s better to be bald but feeling better.
Happy Sunday to everyone!
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Emac-What a shock that news must have been. We are with you as you figure out your next steps.
Hi Micmel!
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emac - so sorry about your lung news. I’d expect that in addition to your test, the pleural effusions will be drained and sent for pathology.
sunshine - i would reach out to your MO given your fever got to 101.
I can’t imagine living with the big D. I told my MO that I would never agree to Verzenio.
I turn 68 today. We all know that each birthday is something to celebrate. I was a couple weeks past my birthday when dx in 2019. I’ve watched the calendar flip for 4 more since then. Praying that I’ll have many more! Will head to church this am and have our DD and family join us for dinner at our favorite restaurant, St. Paul’s Fish Market. And sit on the porch with a glass of wine in between.1 -
Emac- My thoughts are with you.
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Goldens—- HAPPY BIRTHDAY
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Emac - I am so very, very sorry to hear your latest news and my heart is with you. I'm glad to hear that you have some possibilities to try and that you are willing to go some extra miles to try and help yourself as much as you can. I like to think that there is always hope, and I am hoping big time for you! As I'm sure you know, so many of us are here for you.
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Goldens - Can I invite myself along to your fish and wine on the porch this evening (wink)? I can't think of anything that would do me better right now than to sit on the porch of a nice restaurant enjoying a glass of wine and good company. Have a real nice time with your family (I'm jealous)!
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Emac, I am so sorry for the prognosis but like the spirit you are putting in to living longer. We are all here and care for you so much as well. In your permanent pocket until the day I am not needed.
I am still doing well, going to the grocery store today, clouds opened up and could not go yesterday. Laundry started so once finished going out for the bus, still winds up to be around half an hour walking to and from the bus stop but that is fine. Breakfast will likely be a bean type meal. When I get home, will be shopping for internet as my network is running off my phone right now.
Have a good day.
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emac Admire your approach, if we are without hope what do we have…hugs
Rk Hope your dose reduction continues to lessen side effects.
Shanagirl Hope you enjoyed your neighborhood party, sounded yummy to me.
Sunshine Sending positive vibes that your feeling better today
Mara Glad to hear you’re doing ok
Goldens Enjoy your fish and wine , how nice! Happiest of Birthdays to you🍷🎂
Hey Mel how bout those Philles! Hope you’re well and staying cool this swampy weather is ridiculous😩
Thanks for all the lovin on Daisy! Here’s another pic per eleanora’s request
Hi to all in the room , have a good day.
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Goldens, Happy Birthday!
Emac, I am so sorry to read your news. Praying you can find a treatment that will give you more quality time.
Carol, how is your fever this morning? Praying you will feel better and can get outside soon.
rk, sorry to read about your jaw and losing more hair. Hoping you can find joy somewhere in this day.
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Goldens - happy birthday! My parents love St Paul Fish Company, mom is always yapping about some great cocktail pour she got there and the very reasonable price/quality on the friday fish fry. Hope you have a great dinner and time with family!
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cookie~ loving daisy. More more !!
emac~I’m thinking of you. Don’t forget they don’t hold crystal balls. They are not able to see a list of expired by dates. You’re showing your strength and desire to live longer. We are all sending you love and sincere support.
stormy day today grey. Just dark. The forecast says more tomorrow. Those Phillies are unpredictable ….. but they tend to run in streaks. I’m really a Philly fan for them all. Always have been.
hope everyone is feeling better. Hope fevers are down. I still can’t believe we lost kitty. I’m still upset with wonder about Sadie. This is all so very difficult. My heart is with you allChelle~you’re also on my mind. My sweet friend. I think about you constantly and am snuggly in your corner holding your hand as you get ready to enter this phase of our cancer journey. If I could be there in person. I so much would. Much love to you and family.
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Emac I wish you didn’t get that bad news. That news sucks to hear. Please stay hopeful. You are in my prayers that you find the strength to deal hopefully and focused on your continued survival.💙
@goldensrbest Happy Birthday 🎉 You mentioned that you told your MO that you would never agree to Verzenio . Why is that.? Can you let me know any information about Verzenio that I can discuss with my Oncologist? I would really like to know If there is something I should be concerned about, since I am on this medication. I am a lot older than you are but would still want to know.
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Good morning, ladies. I’m feeling better today. I slept a lot yesterday (but, of course, couldn’t sleep last night) and my temp is down to 98.9. My normal is 97.7, but I don’t feel like I have a fever. It’s weird, but when the backs of my arms hurt, it usually means I have a fever. Anyone else have symptoms like that?
The question I have is that I’m supposed to contact my “provider” or “health care team” when my temp goes above 100.4 but WHO am I supposed to call? My MO? The GI doc who performed the recent endoscopy? The pulmonologist because I’m coughing? Of course, my fevers seem to come on at nights and weekends, not when my regular team is in the office. I’ll message them in the morning and see. Life was simpler when I only had one doctor. I don’t even see that PCP any more.
I’m trying to keep on top of everything here, but not doing a very good job of it. Thank you to everyone who responded to my post. You all are very dear to me.
Carol
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Emac, I'm so sorry and just plain mad on your behalf about your latest news. Seems like you had just recently been given good news about your fracture being stable, and now this. I will be in your corner and praying that piqray works for you, as well as if your MO also wants you to consider chemo.
Sunshine, hoping your fever is better.
RK, really hoping the dose reduction of the enhertu means fewer side effects, sorry about all the hair loss on this drug, too.
We just go through so much, trying to live with this disease. Wish we could all scream together, like standing out at the ocean's edge, and then probably start laughing afterwards. During the pandemic, people used to howl at 7pm near where my Mum lives. I'm thinking we might have to reinstate that, for everyone living with MBC.
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