My Husband, My Life, My Love, My Family, My Cancer
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Great news dutchiris!
Make room for me in your pocket Dogersgirl! I hope you like cheetos!
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Rosie,
As someone who has gone through local liver treatment, I would say you should seriously consider it. Most MOs aren't that keen on local liver treatments, nor do they seem to understand its value. An IR, though, will be straight with you. Good luck in making this decision.
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Hi Micmel! I do read this thread regularly but don't post too much here.
Love the tree photos. We have a mini tree and my son (4 years old - will turn 5 the day after Christmas) asked if he could decorate the whole thing. I put on the lights and let him do the rest. He has been helping me the last few years so he is familiar with the process. He did a great job - exceeded expectations - and I was so relieved he wanted to do it! Freed up a good chunk of time to finish the rest of the decorations while he did the tree. But more importantly, it was such pleasure to see him so excited about Christmas and decorating the tree.
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Micmel, " Randy lay there like a slug. It was his only defense." That movie kills me!
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JFL~ always good to see you. Hug that precious child for me. Sounds like a moment to always remember. My kids would always put all the ornaments in one spot! Bare tree but active lower corner. It always made me laugh because each year the bald spot grew along with them. Time flies. So much !
Runor~”dad put electric sex in our window, for the neighborhood to see his award “.
“Randy, who’s my little piggy?
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Dutchchris- now you can relax and enjoy the holidays! And Dodgersgal - best of luck with today and hang in there.
Mae - that kicks ass and now you have some sun to look forward to at least. I did high school in Las Vegas and for Christmas it was always nice to be able to go out in a light coat and immediately play with gifts/toys. Never been to Laughlin but that is one cheap change of scenery! Boo has the right idea too!
Moomala - Im pretty sure your living room is the same size as the entire ground floor of our place. It looks so cozy - love the pouffes on the floor!
Hello as well to everyone else I may have missed - hate that you can't scroll back without losing the message.
I finished Day 21 of Ibrance this morning and feeling a bit congested, like i have half a head cold. I didn't sleep well last night, so off for a short nap. On the plus side the muscle and bone aches have lessened considerably and I can go longer without Advil. Pelvis still stiff but I have graduated to doing the zombie shuffle around our 5 ft by 5 ft kitchen fairly comfortably without crutches, and I almost bent down completely to feed the cats this morning (the last few weeks I just tossed the plate of wet food on the floor and they had at it). Three weeks out from rads, I guess this isn't too bad but damn it seems slow. Based on the ugliness on the screen I guess I shouldn't be surprised.
Packages are starting to arrive at the house and for collection at the grocery store, so I think I will take a walk to the store after my nap to pick up the bulk of Other Half's gifts. He is out at his office holiday party tonight so its just me and the cats kickin' it and wrapping presents.
Santabarbarian or Frisky - I have some melatonin (5g) - was thinking of trying that in the evenings to help keep me asleep. I take the cancer pills in the morning - worth giving it a go? Any suggestions or things to watch for? I have taken melatonin before and it had some benefit for me, but that was well, before.
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Sondra~ Lol at just me and the cats kickin it. Lol adorably put.....
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SondraF, glad you're feeling better...as far as Melatonin is concerned, yes it will definitely help you get a good night's sleep....in addition, there are doctors that point to a definitive anti-cancer advantage for taking it. Being able to sleep deeply is very important for human health...and my sleep was greatly disrupted for many years before being diagnosed.
I'm currently taking 20mg. After an hour I do enter into a very deep undisturbed sleep, full of dreams, and when I get up to go to the bathroom, I can quickly pass out again...I wake up around 7 am sometimes I'm a still a bit sleepy, but it goes away with the first cup of coffee...
It's important to lower the lights after you take it. Darkness is essential for its effectiveness...
Duthchris, congratulations on the great results!
Beautiful Christmas trees everyone! No Christmas decorations over here yet...I have no energy or any interest in any of that...I'll be happy if I gather enough strength to tip the four doorman and the 20 other people working in my building on time....
On Christmas Eve, I'm planning on making a very elaborate baked pasta dish with the help of my best friends and sharing couple bottles of Chianti...that will remind me of Christmas in Italy, although we had the baked pasta on Sunday lunch, and seafood on the eve....but where would I be getting live eels to be butchered right before roasting them on a bed of bay leaves? And do I want to be chasing terrified eels running around my apartment looking for a place to hide? My friends will have to set aside memories of the wonderful flavors of that ancient tradition....the days of buying butchered eels in Chinatown are over! These days I can't even kill a fly...when I am in the country, they are usually escorted out of the cabin unharmed....
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I also take 20 mg. I was told to work up to it as 20 is a fairly high dose. (If you are used to 5, start with 5, then go to 10, etc. Give it few days at each level.) I have the same result as Frisky ~ 30 mins later, i easily drop off to sleep for whole night. However my kitties wake me more like 6 am.... With the melatonin, i take my magnesium, niacin, and ashwaghanda which is another soporific anti cancer herb.
I was told to take it at roughly the same time each night, in a pitch black BR, that's cold (under 68)-- this is the best for circadian rhythm. You can have blankets but your room temp should be cool.
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SondraF— keep us posted on how the melatonin works for you. The thought of deep sleep all night is delightful
Illimae—. Your trip to Nevada sounds great. I am hoping that RO can tamper my back pain enough to allow some traveling, too. Didn’t go anywhere in 2019 and that is very unusual for me. Hoping to make it to the beach in 2020. Love the sound of the ocean.
Micmel & Runor— am enjoying the quotes from Christmas Story. “I triple dog dare you”.
JFL- love the mental image of your son decorating the tree. Such a warm holiday memory
Thanks to those who waited with me in my pocket for today’s PET scan. I was soooo ready for the water as soon as the test was over. It was a bit uncomfortable being on my back without pain meds. Funny thing is the nurse at the clinic told me I could have taken any pill other than diabetic meds (which I don’t take) Too bad the lady on the phone pre-scan told me nothing to eat or drink after midnight and do not take any pills/meds before the scan. Live and learn
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dodgersgirl...we're not supposed to eat or drink for six hours before a pet scan...what you were told is correct...I hope you get great results and can remain on the current TX.
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Frisky— thanks. That is how I remember the other 2 PET scans, NPO for 6 hours before the scan.
One would expect the nurse that works in the nuclear scan area would be on the same page.
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Dodgersgirl, don't be surprised at the amount of ineptitude out there, that's why Mel's living room and other threads on this board are so essential to our survival...we are dealing with widespread stupidity...it's a national disgrace....Tumor markers that don't correlate or mean anything, pet scan reports that are dubious at best...useless and dangerous medications that suppress instead of reinforcing our immune system...they make us too tired to fight back while we have to fight opportunistic infections....cancer care is a minefield, a constant opportunity for disasters to happen. So be careful and ask questions twice...
Check this out...I wish I could have a little pet owl....
A Georgia family found an owl hiding in their Christmas tree
https://www.cnn.com/2019/12/18/us/owl-christmas-tree-found-trnd/
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I love a Christmas Story too. Deck the halls with boughs of horry, fa ra ra ra ra ra ra ra ra. Love that scene, especially when the duck head is chopped off. It is great. All the scenes of the younger brother wanting ralphie to wait up too. And when Ralphie said the F word.
I don't have any decorations but simply put, would have nowhere to keep them so not going to buy them. I will live vicariously through this site and my familys home.
I did not do too much today. Laundry of course and felt all proud of myself as I figured out how to wash a large blanket in my tiny washing machine. I can wash it one corner at a time, get it dry and do the next corner later. Saves me carting around a super heavy fleece blanket but allows me to get it clean. I am sure it will take a while to dry so only one corner is being done as trying to do the whole thing would be a nightmare to dry. It does fit in my little dryer though.
Tomorrow, I am seeing Star Wars Rise of Skywalker. I have no expectations on the movie. Just want to enjoy the popcorn and space battles. Looking forward to it.
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Frisky— I am not a timid patient. When a doctor tells he/she will do something, I expect it to be done. When an early stage BC patient, I brought in a list of things my MO or MO’s office had dropped the ball on and we went over them line by line. One of the MO’s nurses wouldn’t speak to me after that. MO retired shortly after. Certainly keeping a mental list ref my new MO.
It is scary how inept large bureaucracies become.
A pet peeve of mine is when you are told you need such and such and the Doctor’s office will schedule it so you say to please make the appointment on Wednesday as that is day off at work and the office says ok. But when you are called back, the appointment is for any day BUT Wednesday. Have already encountered this with new MO’s office.
I read every report. I ask questions. I ask why this and not that. I don’t make a good patient but I only have 1 go round on Earth!
Ref the owl story, it’s like the squirrel in the Griswold’s tree in National Lampoon’s Christmas Vacation.
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dodgersgirl, I'm sorry, I don't know why I thought you had been just diagnosed, but now I see that you've only recently progressed, therefore, of course you would already know how to best protect yourself...best wishes to you of continued success!
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HaHa you guys are funny! I watched It's A Wonderful Life yesterday. It was a good reminder of what's really important although I'm a bit like George Bailey and really had hoped to see the world one day.
Frisky we have little screech owls in our neighborhood trees. I absolutely love hearing them when it gets dark in the summer time and the windows are open.
I am beginning to feel as you do about cancer care. Good grief the amount of contradictory information I got in the hospital last weekend was pretty impressive. Thank goodness for Dr Google.DodgersGirl, glad the PET is over.
Sondra I'm so happy you noticed my poufs. I just got them from Wayfair and I absolutely love them. The grandkids love them too. Yes this is just half my living room. I don't have a giant home but I live in a Victorian era home in a cute little village. Our village is a LOT like Bedford Falls which btw It's A Wonderful Life was filmed about an hour from where I live. DH and I grew up here and met in the 7th grade.
Back too resting. I keep thinking I feel ok but then I learn pretty quickly that just a little bit of housework is really overdoing it. Please be gone Pneumonia!
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Frisky— oh, nothing you wrote bothered me. And I appreciate tips and lessons learned from others.
If I sounded bristled, it was directed at the medical field and not you, for sure.
I love all the knowledge you share. What a blessing you are!!!
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Dutchris congratulations on good results. You can breathe.
Dodgersgirl I was told I could take my meds and drink water before the PET even past that 6 hour deadline. I take valium just to get in the contraption. I used melatonin for sleep for a year or more but now it stopped working and I take 5mg ambien and MM and then I pass out. I have a mind that always goes to high speed horror at bedtime.
Santabarbarian I may try melatonin again the way that you are prescribing it. I just have to get to sleep. I spent so many nights trying miserably to fall asleep.
Moomala I hope you are feeling a little better today. Pneumonia is no joke.
Mara enjoy the movie. I had no desire to see any movies but my DH said he wanted to see one so I will go with him and eat popcorn with no expectations. Enjoy.
Booboo I hope you felt up to going in for your appt. today.
Frisky your cooking plans sound amazing. I've never eaten an eel in my life even when my dad caught them we gave them away. A lot of people were happy to get them all squirming in the bucket.
Sondra F congratulations on getting through the first 21 days of Ibrance.
Simone 80 thanks for the cheetos. I love cheesy snacks.
JFL what a beautiful picture you painted in my mind about your five year old decorating. Sweet.
BevJen what is an IR?
Micmel your story about your kids and their decorations was precious. Do you have pics of those trees?
Waving at Runor, Lynwood, Grannax, Mae, and everyone else I missed.
Tanya
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Hi, Tanya,
An IR is an interventional radiologist -- the folks who do the local liver treatments, for example (Y90, microwave ablations, etc.)
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Hi Tanya, All,
Yes, I did make it in to get my chest X-ray today...guess what? I also have pneumonia! So we will be the Christmas pneumonia girls, Moomala! Mine is not as bad, I’m sure, as yours is as they said I didn’t need to go to the hospital. However, if I am not feeling much better in 3 days, then they want me to call them...so I’m not out of the woods yet. They gave me doxycycline and benzonatate for the cough. I am actually glad something showed up. Was beginning to think I was losing it!
Mara,
I’m shocked that some hunky guy hasn’t found you and swept you off your feet. You sound like such a clean and neat housekeeper...you are a good catch, girl! Seriously, your description of how you washed that blanket humbles me. I so often take for granted what I have. I’m learning to be grateful every day for things like a full size washer, thanks to you and others on this thread. God bless you
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Tanya, wild eels have become quite a delicacy lately, especially in Japanese restaurants.
In Italy, eating eels on Christmas Eve is symbolic for the defeat of Satan by the birth of Christ, and millions of eels are caught and roasted on that day.
It's a cruel practice, but I have to say, however, that nothing beats a piece of roasted eels whose fat has melted on live coals on bay leaves...I don't know exactly why but it's an amazing combination of flavors. They have built in seasoning, don't need anything else to taste fantastic!My American friends recoiled in horror until they tasted it...and now it's “so....when are you going to roast the eels again"
Booboo feel better!
Moomala, your Victorian home and little town are indeed very charming and idillic, the type of lifestyle I would have liked for myself at this juncture....no little owls in Chelsea, were I live...just pigeons and sparrows and at times a hawk has been seen landing on fire escapes.
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Ahhh Frisky but my daughter and family are headed to the city tomororow and they'll see Magic Flute on Saturday at the Met. I am so happy for them - have never made it to the Met so I am also envious. This is good exercise for me - stop being so jealous of the things everyone else is getting to do and enjoy the light in their eyes while they're telling me about it. What I think I like about being here in my quiet neighborhood is that everyone knows me here in town, and I get plenty of meals/texts/errands/visits and love and a lot of quiet walks on tree-lined streets. My village sits on The Erie Canal so scads of history.
BooBoo we seem to live parallel lives lately! I'm SO sorry about the pneumonia. I was on ZPack and my cough is pretty dry at this point I'm just feeling tired. But who knows if that is pneumonia or Afinitor. My PCP told me the other day that pneumonia is a four-week illness so you be careful. I was in the hospital because I was SOB and my oxygen was dropping a little with exertion plus fever. So glad you got the chest X-ray. This cough of mine and exhaustion started a few weeks ago so just maybe you would have gotten into the fever and stuff if you'd waited much longer. I am suggesting lots of rest BooBoo!!! I'm binge-watching television this week. Good thing you didn't have much planned for Christmas!!!
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Dutchiris congratulations on the wonderful news! I hope it is sinking in and you are getting some relief from the scanxiety shockwaves! Big high five!!
Dodgersgirl - in your pocket! I love fresh fruit and strawberries and blueberries and blackberries and basically any berry I am a huge addict!! Will bring a little whipped cream for dipping!
Oh no Moomoola and now Booboo with the pneumonia! I am so sorry to hear that! Sending healing thoughts!!
Beautiful xmas trees everyone!
I am doing well - just plugging along. Back on the letrozole and off the Ibrance now...more labs tomorrow to see if WBCs and neutrophils returned to a reasonable range to get back on Ibrance again. Holding pattern in the air...waiting to land...hoping for more info.
Other than all that medically-related stuff, life is pretty darn good! My BFF survived the mastectomy and DIEP flap procedure's first 24 hours recovery and we are praying for the spared nipple to survive! Nipple prayers!! I facetimed with her yesterday just a couple hours after surgery. She looked a little worse for the wear, but I was amazed that she was up and chatting away! The human body is quite resilient!! I see it everyday.
Wishing everyone a happy almost end of the week!
Hugs,
Philly
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Moomala, going to the Brooklyn Academy of Music to see the work of international directors and to Lincoln Center is certainly fun. The Met production directed by Julie Taymor is an entertaining, lighthearted affair that's very popular. They will be smiling when they get out.
Too bad you couldn't join them...damn that pneumonia! Feel better....
Philly, I hope the results allow you to stay on the current treatment!
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Hello Lovelies~ busy busy day here today! I had my palliative care visit and got my all medicine taken care of. Two ladies with pneumonia, uh let's bundle you guys up and serve you tea with honey and warm blankets along with good company. We will take care of you. Please rest BooBoo and Moomala.!
Tanya~ hello sweetheart, my kids were happy little goof balls.... I don't have a pic readily handy but do have one from when they won the best Halloween Costume from school and our local parade. They went together, since they are only 14 months apart. Close as can be. I like it that way. Always same friends... it worked. I had the best time being a mom. I believe it was what I was born for. To love those three awesome kids. Watch them grow. Teach them. I feel honored to have done so.
Frisky..... hello..... Santa... hello to you too. Mara~ hello beauty. Candy~ hope you're well..... Bev Jen. And Simone. Hello hello! NKB. Hope you're well. JFL~ hi ya!!! JKL haven't seen you! Blue shine.... hi darling Long time no see. Dodgers girl~ sending you a hug!
movingsoccermom~ hello friend! Philly. Hello honey..... I have been thinking of you. I left you a response on Marco Polo! You're beautiful girl! Just lovely 😊!! Stillivin~ hi honey..... Pots..... been too long my Friend... Daniel and Leslie Thinking of you guys Has anyone heard anything about Gumdoctor? Hello Karen!!!Runor~ “you Damn bumpusses". “Those damn dogs ate my turkey, no Christmas turkey, no trimmings and leftovers"
Sondra~How was kicking it with your cats. My dogs are with me. They are work. Especially my oldest dog Tag. His back legs are toast. I'm worried one day he won't get up. Just like older people. When they fall they seriously cannot get up. I had to help him. It scares me because we have stairs. I've seen him fall a few times already. It's awful to watch. Bigger dogs fall harder. Yikes !
Mae~ sounds like you have planned another travel destination and we will need full packing tips and all corresponding food and excursions, since I live vicariously through you!! I hope you have a blast. Safe but a blast! Hugs sweet friend.0 -
Good to hear from you Philly!
Dodger, just posted on another thread to you, also not realising you’re not newly diagnosed. Quite rightbto keep tabs on absolutely everything!
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Hi Micmel,
I saw Gumdocter on the clinical trial thread. She is off madam x and on a trial. Not sure what the drug is.
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For those who are sick, I hope that you feel better very soon.
Anybody who's progressed, may the new treatment be kind and keep you stable as long as possible.
Mel, glad that your medication has been worked out for you.
My experiment with washing the blanket works as far as washing. Doing one corner at a time since the whole thing can't fit in the tiny washer. The problem lies in being unable to spin dry it. It does not fit in the spin dryer. It took my tumble dryer 5 hours and it still was damp in a lot of places. I am going to get rid of the blanket. It is far too big for my bed. I really only need a twin to a double size. If I can't wash it, I don't want it. Oh well, was a good experiment to try and now I know it will not work. I will send it off to the goodwill. They can clean it and someone else can take it home.
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Maybe a duvet with a removable cover? Then you only have to wash the cover...
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