My Husband, My Life, My Love, My Family, My Cancer
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Well hi all. Enjoyed my Tastykake with a glass of milk and toasted the super bowl winners (by a large margin), The Philadelphia Eagles. It really was a blowout game until last 10 minutes or so. Lots of tears and lots of beers will be flowing tonight. Loved the puppy super bowl, too. Some of the rescues in our area are looking for seniors to foster dogs and cats (no commitment long-term). I've thought about it repeatedly as our girls are seniors now and I'd love a male plott hound mixed to livin things up around here. And then I remember DH only has two hands to hold two leashes for walking time. Girl can dream, can't she?
Kids still here after two months. We invited them to stay during cold spell as they could not get their living arrangements warm enough. They haven't take the clue it's time to head to their place and it's getting testy around here. Very difficult to feed 5 people, water bill and more than doubles, electric bill is almost 3 times and I hate to start on the shall we say "different schedules" problem. They get up after noon and stay up until 3. Cook dinner at 11 p.m. I love my family but I'd be very happy to see them on weekends. Not sure how to get them to move along, DH is getting really grumpy.
Here's to better healthier days ahead for all and in your pockets for all your needs.
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Hello ladies
Hope all is well. In pockets for any upcoming scans and tests.
The eagles game was entertaining. Congratulations for all whose team won.
Caught a cold last week. Maybe at a doctor appt, I wear a mask but oh well germs are germs. Between that and the osteonecrosis of the jaw I’m exhausted. Tomorrow Pet and Cat scans.
waving hello to Mel. I think she’s an eagles fan.
sending hugs to all.Tanya
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Well, I slept lightly but still feel rested. Not too much going on but an MRI this afternoon which is fine, get results next week. Have to make sure DB and SIL are able to attend the results as they have questions as mentioned above. It is nice and sunny today and cold.
I have laundry, not too much as I finished quite a bit yesterday. I do have garbage to put out tonight so I will get that together before my appointment and take out once I get home I think.
Planning on an egg sandwich meal for my first meal and not sure what to have after, Probably meat pie with a side of coleslaw I bought. I could also make a couple of eggs, peppers and potato cubes in microwave and chop them in with croutons and cheese. Take the stuff, spray pan and melt butter on bottom and heat it all up and have half an english muffin with plain butter. I am thinking that sounds good to me.
I do hope everyone has a good day and in pockets for all who need me.
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Tanya - Nice to hear from you, but sorry about that cold. It wouldn't surprise me if you did pick it up at the doctor's office. That happens to me a lot - I go there for an appointment and within a couple few days, I've come down with something relatively mild, but something. I hope yours is also mild and goes away soon. Also wishing you luck with your scans tomorrow. I too send congratulations to all the Eagles fans. I'm not really a sports person and didn't watch the game, but I was hoping for an Eagles win. My paternal grandparents were from Pennsylvania, so that was enough for me to decide which team to hope for.
Yes, hello to Mel, and thinking of her as always. Hope that Eagles win and some love from Theo had you feeling better over the week-end Mel! Hugs!
Mara - That egg sandwich sounds good. Fingers crossed for your MRI this afternoon. Take care.
Well, I get Fulvestrant shots tomorrow. They've been put off twice now due to holiday and weather issues. I've been getting them for almost 2 years now, and I know they are keeping me alive, but I still hate them. My clinic is so booked now after all kinds of weather cancellations that I won't be able to see the onc as planned, but the NP instead. She is great though, and I like her a lot. Just haven't seen the onc in awhile now and won't see him again until next month. He was out in January, and now this February mix up due to the bad weather cancellations, so haven't actually seen him since before Christmas. Actually it's been nice to not have so many appointments and to just be chugging along. Really hope it stays that way of course, but …
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Thank you three tree.
Egg sandwich tonight, microwaved two eggs with frozen cubed potatoes and peppers, cut up after and chopped with cheese, put in a frypan with cooking spray and garlic spread, let it sizzle on high for a minute or so and then turned off the burner and leaving covered to absorb the garlic spread, will salt and eat once cool. It was pretty good I think. Should keep me satisfied until I get home.
Wearing some cleats for getting outside AND putting out garbage, no time for salting, spike out as well on the cane, feel pretty confident for the very short snowy walk out front of the building.
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I think I’ve been away from here for too many days and have not checked in. I missed you all and stopped in to see how you’re all doing. Seeing that some of you are dealing with progression, medication changes, and insurance, and hospital & MO issues, makes me feel I should have checked in sooner so I could respond to each one of you after so many days. I’ve just been busy painting, resting, reading, watching TV, dental cleaning appts…..So I’ll try to respond to as many as I can remember after reading thru everything going on. First I want to say @goldensrbest Oh my girl I am so saddened to hear about the loss of your beautiful Bella. I well know and feel your pain from having to let her go to Rainbow bridge😢❣️🐾🦮❤️🩹. It’s a sting to the heart to have beloved dog suffer and need help to pass away. Heartbreaking.💔 Give yourself time to grieve…….
@mara51506 , I agree with @irishlove I too, … I just don’t have your energy to keep up with all you do each day. You are th energizer bunny accomplishing it all. God Bless you. I Just want to mention each of you who caught my eye as I read along, but now I’m having a hard time remembering exactly what each one of you mentioned regarding medical and insurance issues. I know you are r struggling and my heart is sending love and prayers to you. @threetree, @sondraf @intolight @mkestrel @candy-678 @micmel @snow-drop @rlschaller @tanya_djamila and the others of you I haven’t mentioned. Have a calm and restful evening dear ones.
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@intolight Sorry you have to go through the liver biopsy but glad to hear the MR was better than expected. In your pocket always.
@snow-drop Also in your pocket and fingers crossed Xeloda kicks your cancers butt!
@irishlove Well what a win that was four our Birds! Finally a game where we weren't hanging on the edge of our seats. Was great to celebrate something good with my friends and family. Yep, we love our kids but when it's time to go it's time to go lol.
@mkestrel Well aren't these insurance companies just ridiculous. These half ass determinations are beyond ridiculous. It just makes me angry that you even have to think about this. I'm sure your MO 's team will be all over it and straighten this out for you. Hugs
@tanya_djamila Sorry your now dealing with a cold on top of Osteonecrosis. In your pocket for good scan results.
@mara51506 In your pocket for stable MR results.
Hi to all here, hope your day has been going well❤️
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Paratransit and MRI were both fine. The driver on the way home was worried about the speed of me getting to the steps, apparently he wanted me to slow down so I did.
I am probably getting fast food for a change. Got a Cheeseburger Mcdouble and a couple apple pies. I am a starvin Marvin at this point. Unsure why I get hungry from hospital stuff like Herceptin, MRI or CT.
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Shanagirl - So nice to hear from you and glad you sound like you've just been "doin' your thing". That's the best! I sure understand how difficult it can be to keep up with everyone here in the group. I read along, and I care so much, but sometimes I just can't keep it all straight so that I can respond in a meaningful way. A lot of the time it's just all the fatigue and brain fog (thanks drugs). Just so nice to know that you are living and enjoying life as best you can - especially your painting.
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Snow-drop,
Surely Pfizer will not let their CDK4i linger for even a day longer than it has to, they are rushing to recover market share having lost some steam with Ibrance… I guess they can't get FDA fast-track given there are already other CDK4is available, but ARV-471, which is also in the same spot as phase 3 v Fulvestrant but no longer recruiting. They initially said that trial would run thru 2028, so I don't know how long it takes to finish up but hopefully nowhere near that long. Perhaps if you can get the PROTAC it might still work with Verzenio. Anyway obviously I have no idea how long these trials take to finish, but hope its fast..
You probably know about these, but anyway For NF1:
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@cure-ious It sounds like the study is for HER+ patients. My biopsy is scheduled for Thursday and should reveal whether my preciously HER- has changed to HER+.
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Good evening all. @tanya_djamila Best wishes on your scans tomorrow. I hope your crude clears up quickly. I don't know much about osteonecrosis but something tells me I'm gonna find out personally.
@mara51506 Hope your scans turn out to be good. How's the saying go "walk slow and carry a big stick"? The driver is so sweet to care about you, but we all do, too. Slow down girl and keep carrying your stick and wearing your ice gear.
Hi @shanagirl No need to apologize for time away or not recalling all events. We all have at least a bit of brain fog. And we all love and care for each other dearly.
Still nothing from Pfizer on patient assistance. Ordered refill on cephalaxen for UTI and they sent Nitrofur 100 mg. Total waste of time taking such low dose. Next they sent half the dosage for cephalaxen that I take for stubborn UTI's. So I called GP office and they are making me come in. Grr, been doing this routine for ages, test my own urine and keep antibiotics on hand. Never had a problem for the past 5 years. Hate going in and as someone mentioned, getting exposed to someone sick in office. Cancelled appt. for cortizone shots since I have an infection. Found a new appt.was emailed to me for tomorrow that I did not set! I told them I'd reschedule and the receptionist repeated that back to me. I think I've aged a whole lot this past week dealing with b.s. medical mixups. One foot forward at a time or I'll totally meltdown.
Hi MEL. Thinking of you, always. And so many others that we are missing…
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Irish, I am sorry you are dealing with another UTI, in pocket with cranberry gummies to send that infection away. Also in your pocket as you are making your way through these messes that come up.
Doing dual laundry, clothes in the bigger one, will hang up the pants and regular cloths for cleaning in the repaired smaller one. I really enjoy that.
I could not decide what to have for breakfast, combined two eggs cracked on top of fettucine alfredo, mix together and figure out if needing toppings, pizza or a meat pie later on.
No other plans today, got the tv playing cooking video, the ad that pays is the paint commercial that has Hungry Eyes playing since the paint is supposed to be so good, watching paint dry is wonderful.
I do hope everyone has a good day, MRI results for me should be the 20th of this month, DB and SIL want to attend which I have mentioned. They have questions for the RO. I will pay attention to make sure symptoms are not overblown. I am slow and careful about getting around, walking is fairly normal with the cane as well. No falls from losing balance so that is not bad, planning to add 5000 steps a day with marching soon, maybe even today, will see how I feel. I am in everyone's pocket who needs me as well.
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IntoLight,
Not sure which trial you are looking at?
Regarding your biopsy, you might get an increase in Her2 expression, especially after spending this long time on endocrine therapy, because the Her2 gene is a strong driver of MBC growth and is not being inhibited during your previous treatments, so it could be contributing to the progression. And if you previously had Her2 at the +1 expression level and it moves up to Her2 at the +2 level, they suggest that you get it tested by FISH for gene amplification, because Her2 +2 is a borderline value for Her2-positive cancer, and then there are other treatments you could have.
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Doing dual washer laundry, clothes in the newer one, cloths in the repaired one, just need to do the spin dry and can throw stuff in the dryer. I also want to wash some extra blankets.
Bought some extra supplies on Amazon, more litter and food for the cats and a fleece blanket for a sad little ottoman in the living room, Tigger likes to scratch it so I figure the blanket can be wrapped around it as well to save it. Floors need doing, a quick sweep, vacuum and mop. Might pull out the robot vac which was a general waste of money as it is not very practical, if not used I will leave it to sit.
Planning to make up egg sandwiches today. I have far too many english muffins on the go, I made the mistake of getting them at costco. First meal is two mini pot pies and will add some coleslaw on the side as well. Egg sandwich later in the day.
Got 1000 steps so far, planning on 5000 a day, can be broken up but must be complete by 8pm. As the weeks go on can bump up 500 or 10000 per week, may do the silly walk of marching and making it take more steps to get around as well. 0 to 5000 is doable as well. I just feel a need to move my body around. I also am holding the cane, funny that when on the spot the cane arm swings a bit but like the added stability.
I do hope everyone has a good day, in pockets for everyone who needs me for scans, cheering up or chocolate, got a lot of that.
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@mara51506 I love your posts. Everyday you remind me to keep on living and doing normal living things. I need that especially on days when I just want to lie down and let the world pass me by. Yesterday my DH and I thoroughly cleaned the bathroom and it feels good to have it done. I can't do it all by myself anymore but I did as much as I could. I had to stop four times to rest…
It has warmed up to -1° now…yes negative. But we are all tucked in here at home. My DGD is doing school via Zoom due to the extreme cold and icy conditions. This is the district's answer to getting to count the day as a learning day instead of cancelling it. It has brought back flashbacks of her kindergarten year during Covid when all her learning was via Zoom. She is a social person so not her favorite mode of learning.
I have my liver biopsy tomorrow. I am a little anxious but okay. It will be good to have answers. My MO ordered a brain MRI also because of increased headaches, but I couldn't get an appointment until the end of March—the earliest available. Good thing it is not crucial. I am pretty sure I just need to drink more water and get outside more, but it will be good to have that answer also.
I am praying through all of your posts. I do it as I read them because I can't remember them otherwise. But know I am in your pockets for your struggles and pain.
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Mara - I agree with Intolight about how you set the example of how to just live normally and carry on. I don't know where you get all your energy from, but bully for you.
Intolight - Wishing you all the luck in the world tomorrow for your liver biopsy. I will be thinking of you for sure. I can relate to not be able to do a whole job like cleaning the bathroom all by yourself. I also have to take time out and rest in the middle of jobs, before they get done. I even half to take rest breaks between things like taking a shower, then getting dressed, and then drying my hair; three breaks in there, before it all gets done!
Well, I had my fulvestrant shots yesterday and they didn't go too badly. The nurse did a real good job. Also got lab results back from yesterday's blood draw and I'm getting even more concerned now about the tumor marker rise. The 15.3 actually went down ever so slighty and it is at 12, fully within the normal range. The CEA however keeps rising and now it is 6.2 and has now broken out of the normal range. Both markers have been rising all fall and now winter, very, very slowly, but the CEA has taken a bit more of a jump now. I have scans in a month that may or may not show anything like progression (hopefully none of course), but I am getting really scared that something is going to show up that correlates with the rise in tumor markers. So far that hasn't happened. Then I do start to wonder about that whole inflammation idea again and how it can light up scans and not be cancer, and apparently can sometimes raise tumor markers too, and not be cancer. Also, I've been a bit dehydrated both "internally and externally" lately and also had low sodium and lower potassium on these last labs. I don't know if that would affect tumor markers at all. Many, many years ago a nurse told me that lab results can register with higher numbers if someone is dehydrated, because the blood concentrations are greater, due to the lack of fluid/water in the person's system. That's got me wondering too. I'm doing anything to find any remote possibility for the tumor markers rising, other than progression. I can really reach for straws in a scary situation, and this is one of them.
Intolight - wondering if your headaches can't be the result of something like dehydration too. I know the cold weather can dry us out "externally", with drier skin, etc., but I'm also wondering if it can do more internally, because I also get real dry sinuses, throat, and even what seems like dryer lungs with this weather. I don't know if that would ultimately affect more things in our bodies and cause dehydration or not. Your real cold weather I would imagine could cause "odd" things like headaches to pop up. Just more of my off the top of my head wondering and reaching for remote positive possibilities to counter any progression thoughts.
Otherwise, good morning to all, and I hope everyone has a good day. We've got clear and cold here for about the 3rd day in a row, so it's sunny and beautiful out, and I'll take it over the routine rain and clouds that are coming back later this week. Best to all - you are all such a big help in my life!
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Mara As usual you inspire all here to get up and move. Love how you set goals for your day and have a plan. It's so easy to let the day go by if we don't have some type of plan when we are feeling up to it. Can't wait until the weather breaks to go back to long walk outside! We had a couple inches of snow overnight hoping we are nearing the end of the snow season.
intolight Yikes that's freeezing! Will keep you in my prayers for a successful biopsy tomorrow. Hugs
threetree Glad your shots went rather smoothly.Tumor markers can definitely get your mind rolling. Last month mine were creeping up and I swore there was something going on. Then my PET was ok , it's all such a mental game! Hope you enjoyed the sunshine today.
Quiet day here did manage to get outside to play with Buster in the snow. Having lunch with some former coworkers tomorrow so that will be nice. Gonna skip the Eagles parade on Friday over a million people expected. Would love to go but there are so many road closures to get into the city I think I will enjoy at home. When I lived in Philly I was able to enjoy a couple of various championship parades which was fun. So life is a bit different now and that's ok.
Wishing you all a nice evening.
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@threetree Awww I love how you always post how you and haave fellow feeling with everyone. I love your caring comments.💓.
I alsowent to my neighbor’s superbowl invite. I wasn’t going to go but. then though, darn i’m going to visit my neihborgirlfriends rather than stay upstairs here and watch movies while DH and DS watch the game downstairs. So I ended up deciding to go and bring some fried fried calamari. We are a close neighborhood, and it was just a few other couples, so DH decided to come too. So I sa at th dining table with the girls, munching on some. of the food each one brought, and DH sat in the livingroom with the guys laughing and watching the game, while we ladies chatte, and muched on the goodies. I was ready to go home by Half Time,because I can’t sit long in a hard chair 🪑. I have feeling nto great from my. cervical neck stenosis, and I Knew I was due for a followup with my neurologist pain management dr, to schedule an injection,which Ihave been doing every 4 - 6 mths. So. I went home to watch the halftime laying down in bed cuddled up with my 2 little pugs and a cup of tea and got all comfy under the under the blanket.
I saw him yesterday and he scheduled me for next week at the surgi-center locally. He also told me he wants me to see one of the neurosurgeons at the group I go to😳😬. I cannot keep up the pain management injections because he is concerned my condition will worsen if I continue with them. He scheduled me for an MRI and He’ll recommend the surgeon to do a procedur on the. vertebra in my neck. I am really nervous about the thought of any surgery, on my bones, because of Bone mets, though there ar no mets on my cervical spine. Just the severe osteoarthritis pressing on spinal cord on my neck below my brain, and his. concer is that it could progress to mylopethy. So it’s. not going away, just geting worse with the pain throughout my neck to my. fingers, and ribs and upperr spinalcord.. It’s affecting the strength in my legs. and balance, headaches, constand tropping things because I’m losing the dexterity in my fingers. I mean I do get why. he wants me to se a surgeon, but I was so let down and sad after my appt with my neurologist Dr. I have to let the them decide which surgical procedure to do.🫣
Hi @intolight You ar on my mind. I’m in your pocket🩵
@mara51506 , you are th energizer bunny!🥰.
@tanya_djamila I don’t even like the word necrosis. I’m in your pocket. Stay calm girl.
@irishlove I don’t know anything about osteonerosis either, Now I’m going to look it up.
Hi @goldensrbest , I know you’re feeling really sad right now. You are in my prayers. Healing thoughts💓
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Good evening all
Intolight im in your pocket for your biopsy. I hope its easy on you.
Threetree thanks for you kindness.
Mara having someone with you at some appts is good in case you forget something and also it helps them realize how serious this disease and treatments are.
Shanagirl that’s was a tough Dr appt. Back neck cervical issues are debilitating. Hopefully the surgery reduces your pain and symptoms.
Goldens I hope you’re doing ok. I think of all the pictures you’ve shared over the years with Bella. She always made us smile.Mel I hope you are alright today.
Cookies54 thanks for the nice words and encouragement.
Thanks for the pocket duty I mean when it gets tough it’s definitely something I draw strength from. Long day of appts yesterday. Port wouldn’t work and they had to use the machine at Moffitt to put in the needle and catheter. Three tries and then finally almost 3 hours later I got cat scan and then the pet.
I did have a conversation while waiting with a man who assured me Covid was a farce and masks don’t work. I told him I was wearing it for all the cancer patients bc I have a nasty cold I’m trying not to spread. I put my hand as if I’d take it off and he went back and sat with his wife. People can be annoying I’m so glad I was calm. Just keep breathing 😮💨 .The PET results look stable!!! That’s from what I read. The CAT scan sounds (osteonecrosis) didn’t show cancer just outline of dead bone. Doctor already said unless the bone comes through the gum they just leave it and give you penicillin and strong mouthwash that stains your teeth. This was my Moffit second opinion. Anyone heard of anything better for treatment? I’m ok with it bc it looks like I don’t have a choice.
sorry for long post.Have a good night all.
Tanya
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Tanya-Great news about your scans! Good comeback to that jerk about the mask.
Sondra-Hope you are home and enjoying time with your mother.
We're getting some real snow in Chicago. I've been doing a temporary gig this week that starts at 5:30 am so I'm off for an early bedtime. I'll have to shovel again before I leave but I think the roads will be clear.
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Intolight - ditto on pocket duty for your biopsy. Hope things go smoothly for you🙏🏻🙏🏻.
Tanya - love to hear good scan results.
Shana - I get steroid injections in my SI joints. Unfortunately I only get 3 weeks of help from them but those 3 weeks are the best. There is some truth that too many injections can cause more damage than good. My pain management doc says I can get 3 injections a year so I will need to time them out. I also agree with you about spine surgery. It’s scary to think about but it is also worth talking to the neurosurgeon to get his opinion.
Irish - thinking of you and your frustrating Rx issue.
Again, thanks for thinking of me and Bella. Got the call from the vet yesterday that her remains are back and can be picked up. All of our dogs are buried in a little animal cemetery on our best friends 10 acres. All their dogs are also there. We will take Bella’s urn there this summer to join all the other pets, especially her 2 half sisters. My friend Cathy got beautiful markers engraved with each name and I got a lovely concrete angel to guard over them. Every Christmas Cathy also puts up a wreath for them. A photo of Bella with half sisters, Dolce and Jasmine.
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Cookie - Glad you understand about all the tumor marker frustration. We shall see. I have another sunny cold day here, so will get out for another walk for sure. Those always help reduce my anxiety. Sounds like you had a good day. Fun in the snow with Buster! I can't remember the last time I played in the snow with a dog. That too is a real stress/anxiety reducer. Your talk of Philly brought back some memories for me from another lifetime. I spent a couple of months in Philadelphia in the mid 70's, and I've always enjoyed real fond memories of that time. I'm sure it's vastly different today, but there will always be a special place in my heart for Philly. Enjoy that parade from wherever you see it!
Shana - Thanks for the nice thoughts. Glad to hear you were able to enjoy at least part of the game with some friends. I know how sometimes you just get tired and are tempted to stay home, but sometimes "forcing" yourself to get out to see others, at least for awhile, can be a real good thing. I do that kind of thing too. Real sorry about all of your neck/back pain issues. The thought of surgery in that area is never fun. I agree with Golden's comment below about how it could be worth it to talk to the neurosurgeon. I was referred to one a year or so ago and I was reluctant to go, because I thought given that surgery is his job, he would want to do some, no matter what. Well, I was very mistaken and what happened was that he gave me a very detailed explanation of my problems (had had fractures in both T2 and T8 vertebrae and was having pain), and what any surgery would entail, along with the risks and benefits of any possible surgery, and concluded with a recommendation that I not get surgery, as things weren't that bad at that point, and I could wind up worse with surgery. It was extremely helpful, and I also took a friend along who picked up all sorts of little details that I didn't, so again, it was well, well worth the initial consultation with the neurosurgeon. I wish you nothing but luck with all of that.
Tanya - Thank you for your comment. I always appreciate what I see as your kindness also! You are so right about the people you can meet and the things they just start randomly telling you about. What a world! Glad that guy went back to his seat, and very, very glad that your scans are seeming to demonstrate stable. More power to you.
Chicagoan - Good luck with your new temp job. Can't believe that you get out there and shovel snow. I think that's where I would call it off.
Golden's - Once again, sure do appreciate the Bella photo. I didn't know she had the two half sisters - how sweet. The pet cemetery situation sounds beautiful - and to share it all with a friend and their dogs too makes it more special. I've never actually been to a pet cemetery, just know of them. I still have mine in urns here hoping to eventually have them with me, whatever I finally decide to do with myself. I'm just picturing that scene where Bella will be with the angel statue, the markers, and an annual Christmas wreath. I don't think I have ever heard of anything before that was so nice for old family pets. Bella was so lucky to have you.
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@shanagirl Happy to hear you got out and had a nice night out at the neighbors. I’m sure it felt good to do something normal. Ugh sorry you’re still struggling with the cervical issues. I hope the surgeon is very thorough and gives you options you feel somewhat comfortable with. I guess one step at a time as always.❌⭕️
@tanya_djamila Congrats on stable scan! You have been through it with your jaw and I hope it continues to improve. Waiting room scenario’s are always interesting lol you never know what/ who you’re gonna get.
Goldens Your friends pet cemetery sounds like such a perfect spot for Bella How nice to have all these sweet pups remains together. I love that the angel will be watching over them. Love the picture the three of them together 🥰
Threetree It’s nice to hear you have some fond memories of Philly. I always love to stop by my old neighborhood as many of my friends are still there. Hope you enjoyed your mental health walk today and soaked up some sunshine. It’s one of my favorite things to do! My neighborhood knows me by the lady that always walks lol.
Chicagoan Hope you made out ok with all the snow . Lucky for us in NJ it pretty much was washed away by rain today.
Thinking of many , Carol, KBL, Mel, sondra and many others ❌⭕️❤️4 -
For everyone who needs to see a barn owl sleeping in a sunbeam... I took this picture the other day before the snowstorm. It was biting cold and my fingers started going numb on the camera. I felt like a real wildlife photographer haha (30 seconds later running back into house for more hot coffee)
Oncologist found a way to pay for the Enhertu so I'll start it Monday. I'm not looking forward to the always thrilling adventure if finding out the new med side effects but hoping it hammers the cancer. I'm also trying to keep in mind that how I respond to this newer treatment is being closely studied by my doctors who could (but hopefully not) be taking care of my nieces someday. This should be in colorful ink because I'm not good at the find a positive thought concept 😂 ... People who don't really know what to say and repeat some motivational poster line about thinking positive usually get a depressed realist's snarl.
The port is miserable. It's been a week and still hurts. Something is annoying a neck nerve and uncomfortable. I keep swallowing and feels tight like I'm wearing a turtleneck or something and I hate turtlenecks. There's the lump sticking out and i can feel the tube. It doesn't look infected or anything. Definitely not like the pretty demo where you can barely see the port and just feel the little landmark bumps. Hmph. I told my brother i think it's going to hatch something like on Alien.
I haven't posted much here in a while and can't keep up but hope everyone has a good day or at least a better one.
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Mkestrel - So good to hear from you, and thanks for the photo. To look at it, you wouldn't know it was so cold and right before a big snow. The owl actually looks cozy and comfortable there, and I would have thought you were too. So very sorry about the port issue. That is about the worst I've heard of anyone's port, except for actual infected ones. Could they take it out and try again or something? Not that that would be a first choice or comfortable for you at all, unless they actually get it done well on a second try. Love the "it's going to hatch something" idea; lol. At least you can laugh a little about it. Well, maybe it still just needs a little time. I hope that's all. Again, I'm sorry and hope you can find some solution to the port problem, and I hope the Enhertu is a success.
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Mlestrel, love the owl. I am so sorry about the port pain. I am sure you are not the first person this has happened to so there is probably something they can do. Do tell someone as I know when I had pain in mine they took an x-ray. Mine is fine now.
I am still in agony over this biopsy. My daughter nurse has been helping me. Thankfully she was home last night. I have been sleeping most of the day. Hopefully I can start to keep food down now. They had to try three different places between the ribs. I hope they get good information and it was worth it.
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mkestrel - sorry you port experience has been so difficult. Have you reached out to your health care team? Obviously you are the exception to what should be a fairly easy recovery. Love the owl. When we moved in to our home at the end of 2021, the summer of 2022 found us being serenaded by screech owls. We have protected green space around us on 3 sides. But the gas co has a major pipeline going through the green space and every 5 yrs they come through to clear a path for access to the pipeline. In the early winter of 2023, they came through to clear the path and that summer there were no more screech owls. The gas company obviously knocked down their nesting habitat. But in the past year we often hear owls hooting at bedtime and early in the morning. I love hearing them. But it does make me stop and wonder about the price of progress…..
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Intolight - I am just so very sorry to hear that your biopsy was so difficult and continues to cause a lot of trouble. I had read on the liver mets thread about some people's experiences with that, and while what they described was not pleasant sounding by any stretch of the imagination, I didn't see where anyone else had had as rough a time with this as you have. Please know that I am thinking of you and wishing you the speediest of recoveries. Having your daughter there is such a good thing. You are so lucky to have her there with you, and then with her nursing skills on top of it, that's a real plus. Take it easy, have a restful night, and hopefully a much better tomorrow. We are here for you. Hugs.
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@mkestrel Oh I love your photo of that adorable owl. You always treat us to great professional photos and boy do I enjoy them.
Hi to everyone. I caught up reading and now I can't recall much. That happens due to sleeping aide and good ole brain fog. I did read @denny123 she has had her port 23 years and an infection has just been identified. She is or was waiting on recommendations to treat or try to remove it.
Well today was my lucky Valentines Day. A funny card, some good chocolate and oh yeah, call from Pfizer. They said since I appealed the denial, with a second look, I am approved and first box will arrive Monday. Can you imagine that! I waited 6 weeks for Ibrance 75 because of needing patient assistance. An angel helped me out and I had half box of Ibrance 100, So I was covered but I certainly didn't tell them that info. Maybe next year will be easier. They really tightened up and I suspect tried to wear folks down. I refused to surrender. lol
To the poster that is going on a new med and their doc is trying to find funding, I know it will happen for you. My in-house pharmacy said they have had no problems other than Pfizer.
In pockets for all your needs. Mara where are you??
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