My Husband, My Life, My Love, My Family, My Cancer
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Irish - 🎉🎉🎉for grant $$$. What a blessing. We have seen Neil Diamond several times. There is a Broadway show making the rounds about Neil Diamond. Our kids got us tickets to see it locally and if you closed your eyes you would swear it was Neil himself singing. So many artists I wish I could have seen …. John Denver, Queen, The Carpenters to name a few.
Mara - sorry it is taking so long to get appointments. Hopefully things will fall into place quickly.
Stay warm everyone - supposed to be a cold weekend with some snow being forecast. I don’t think it will even stick as the ground is too warm. Hugs to all🤗🤗🤗
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Love Linda Ronstadt! My favorite is her double album with arrangements by Nelson Riddle, who did all of Frank Sinatra's arrangements.
So glad you got the grant. Dealing with this disease is hard enough without having to worry about the cost.
Noticed your comment about taking Xgeva every 3 months because of the cost. I have been taking it every month for 3 years, but am switching to every other month based on a study that followed women who did 1 month, 2 months, and 3 months dosing. There was no discernible difference in the effect on bone strength or protection against bone mets among the groups.
I also read an interview with one of the doctors who developed Xgeva. He was asked why there was no long-term dosing plan for the drug and he responded that they never expected that any of the women taking it would live longer than 1-2 years. Hah! We'll show him!
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@goldensrbest We are due for some snow on Sunday, our ground is still warm as well. That is fine. I still remember one year when we went out to a pizza place called Fluffy's on my birthday. Ground was clear and dry, when done it was a snowstorm. I thought that was great.
@eleanora Yeah, medical studies can be plain wrong, with my inflammatory breastcancer, I was supposed to be a goner after about 2 years but here I am 10 years on, 9 years post brain mets on. Not sure what will be done with the current cyst but honestly not worried about it now.
Today has no scheduled activity beyond taking a picture of my disability slip along with ambulance bill. As I am on disability, we don't pay for the ride but apparently after one year that runs out and you have to resubmit. No big deal.
I do like the wee hangup drier, does what it is supposed, can put clothing in there easily as well. I do want to get more laundry done today and put recycling into some blue bags, store outside til garbage day.
Got a grocery order coming, 3 queso meals, 3 penne meals as well, will make larger meals by heating up both, got chicken fried rice too. Also got the 4 tubes of ground chicken. 10 bucks for four and they are lean ground chicken as well. Can do a lot with the ground chicken. Bag of doritos and some chocolate almond bars. Expensive order but will not require a shop for a while so no matter to me.
I hope all have a good day and in pockets for all as well.
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So I did not get the ground chicken chubs times 4, store was out. Got ground chicken but halal, only one pound of it so will split into a few meals, need to put in pan soon. Probably add taco seasoning and the old el paso cheesy seasoning as well, put into a container.
I did wind up having the pasta so did queso bowl up first and then cooked up the penne chicken, put them in a large container. They will act as part of meals, the halal chicken will also build meals and eggs heated in microwave can also be added to the chopper, I think I will also grind up chips, got spicy bbq chips that can add some flavour, I will see. Beans and rice will fit into ground chicken usage. I wanted the 4 lbs but apparently it was unavailable, put another order that just contained the 3 pack of beef to see if I would receive it. If I do not get the order in the evening, I will simply be refunded.
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@mara51506 I didn't realize you had inflammatory breast cancer. You really are a unicorn! Hope you have a good quality of life for many more years.
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@chicagoan Yes, my MO has repeated pointed out to residents looking in on me that I am a miracle. One thing that helps me is a fast growing cancer responds well to chemotherapy and that is largely why I have not spread anywhere other than my brain. I tell you, when I was first dx with it and checking on here and dr Google, I was sure I was dead meat, then spread to my brain and again thought dead meat. My poor Mother who was as anxiety ridden as me heard me say I'm going to die but I have not. I do not believe this cyst will be the end either. No symptoms as of yet, waiting to hear about my referral to the neurosurgeon.
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Good early morning everyone. @mkestrel I had to go back and read some posts that I had missed and I was so shocked to read of your progression. In your pocket and prayers that they can get the liver mets under control now! I may have missed another lovely lady that scanned and they found progression, I apologize if I did. Do you ever get one of those eye headaches? It feels like a stabbing effect in the eye. I usually blame MS but this one is a whopper. I've been off Ibrance since Oct. 6th. MO appt. Monday. Hope to get back on it then. The neurologist depends on the Ibrance to help keep MS under control. No Ibrance, MS is running amok.
Been smiling and trying to figure who my angel might be regarding the grant money. I applied for a grant from Pfizer every year and that was hell on earth to obtain. But no one else. Perhaps the financial lady, as we spoke about the ridiculous copay for Xgeva and we schedule the shot around Soc. Sec. time. Or maybe sweet Dr. C., my MO. He listens and I must say something a bit out there, but when you find a Doctor that you are in sync with, regardless of his specialty, you want to hang on to him or her. So forgive me if this offends anyone, but I'm hoping to keep him till death I do part. It's kinda like marriage vows, instead it's medical vows and there's a certain peace in knowing he'll be with me thru this journey. Can you tell I don't like change? Must be why I'm married to DH for 46 plus years.
Sure could use a suggestion on how to remove incorrect diagnosis on my medical chart. It states I have Type 2 diabetes and that the doctor went over my meds and the importance of yada yada yada. Ok, so I don't have Diabetes Period. I called Primary and also sent a message thru the portal. That got me nowhere. Office Manager said I'd have to track down who put that info in my chart. I said well my current PA must have due to the date and oh yeah, his name is alongside of it. I was in his office that day. She informed me that means nothing. Now what do I do?? This could lead to very serious consequences if I am unable to provide medical input whilst in the hospital. Besides, my blood boils that such errors occur and hit a stone wall. I won't give up, even if it means obtaining a lawyer (hope for pro bono).
In pockets for all my sweet, dear friends as we keep supporting each other thru this journey no one wants to take.
Laurel
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If you all get a chance head over to Clinical Trials for a post that I added. It sounds like a major breakthrough in breast cancer in the bones. I had to had type as my cranky old computer won't copy cut paste. It's under "Zetagen Therapeutics".
Irishlove
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@irishlove thank you for the kind thoughts. Congrats on getting assistance with your medicine. About the error in your chart, you have every right to ask for it to be corrected. That can carry over into all of your other charts because they just copy and paste. I was a medical transcriptionist, and I was constantly audited on my work for every tiny typo. Now I see errors all over my charts and it drives me nuts. They are just using speech recognition and leaving all the errors, putting a disclaimer at the bottom that this is AI.
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GoodMorning Dearies on this gloomy Sunday Morning. We’re expecting stormy rainy weather, I feel it in my bones. So Any way Happy Sunday to you all Dear ones.
@mara51506 , stay warm with your expected snow . And I have no doubt you will be cooking so enjoy the day, eat and watch some movies🥰
@irishlove I’m so happy for you that you about your grant. As Mets patients we really need our records to be correct.. I always find myself combing through my records on MYChart and trying to analyze everything.🧐
@Chicagoan I’m thinking of you today.🌷🩵. @mkestrel You too are always on my mind. I hop all is straightened out with your medical records. I went through this one time with my records with a horrible gyno woman I called her out on her records and she never said anything she just dropped me as a patient due to some insurance issue she claimed I am not covered for… it was a blessing in disguise. I am sending love to @threetree @goldensrbest @candy-678 @cookie54 @micmel @eleanora @intolight @illimae @everyone else I chat with on the bone Mets forum and fasoldex girls forum and all of you dear girls. as well as any men who post on thos forums.
tomorrow morning I am meeting with RO to get my tattoo so I can start Palliative radiation for my hip groin low back pain all related to a Vestabulum lesion that is the cause of my walking pain and limping. I pray it works.. and then Next Thursday I have a follow-up with the Neurological Surgeon from the spine Brain Institute, wh did the RadioFrequency Ablation on the 8 facets in my cervical spine. I’ve been pretty much pain free as far as that is concerned, PT is also helping with my neck healing too.🩵
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@irishlove That is good news about your grant. So happy. I had an incorrect dx of diabetis in my chart too, but a new PCP noticed, said I didn't have it anymore due to current labs, and removed it. She figured it was because I was on steroids for a period of time which causes temporary diabetis. Could that have happened to you? Just a thought.
@shanagirl Also happy to read your spinal ablation worked and you are pain free from that.
I have a scan on Tuesday, otherwise just trying to get over this cold. Praying for others as I read through.
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@irishlove Glad you go assistance with your meds and of course they need to get your charts corrected as a necessary medicine could be withheld with that diabetes notice thinking there would be interaction to a non existant med,. Hope that clears up for you soon.
I slept well but felt sad to the point of tears on not seeing family. I realize there is a lot they are dealing with and that I took them off the hook for groceries given Paratransit or delivery would take care of it. Decided will phone SIL one week and DB another, just a quick check in and chat instead of bemoaning their absence. Need to solve the problem a bit. Let DB know I miss seeing them, even if it is a coffee type visit but will let that thought go until I see SIL and she can tell me what she is dealing with, still does not want to say over the phone. Far as I know, if the referral goes through with the neurosurgeon, she will come. For now calls will come from me.
I did get some groceries yesterday. Got a mix of penne noodles and the queso bowl, warmed yesterday, let cool and they are in a container. Got a pound of chicken in the fridge as well, it can be added to everything. It is halal chicken but tastes the same to me. I have until wednesday to finish them up.
For meals, they will all feature the chicken I cooked yesterday so thinking about microwaving an egg and some beans, and some chicken let that cool off and throw in the chopper with cheese, bit of BBQ chips that are too spicy as well. Then take the chopped stuff and a spoonful of the pasta and throw in a pan with garlic and butter, crank up the heat and turn off with the lid letting the flavours come together. Later have an english muffin with cheese and garlic spread with a mini pizza OR meat pie. Once I am done with the chicken, will heat up frozen burger, grind it and use it as an extra topping for stuff. Chia seeds are in meals as well, always soaked and no more than a tbsp at a time. I will post if anything is really good tasting.
House needs a good sweep, been terrible on getting floors done, plenty of time for that, still got laundry and want to wash clothes and hang up in my clothes dryer, it is fun to use and quick to dry up stuff. As far as the floors, broom and basic mop work best and will use the dry function of the wet dry vac to clean up the litterbox area, a lot of litter back there that cats have kicked out, just have to move stuff out of there.
Anyway, hope all have a good day, we are supposed to get snow for a couple of days, unsure how heavy but do not care since we go back to double digits above freezing. If I had to go out this week, could simply melt snow where I think I need too. No trips out, phone call with social worker Thursday. I still have no idea what services I should claim since I am still mobile, not upset about my brain at this point. I will see. Going to phone RO office and find out if she has info because I would have thought there would be some urgency of investigation of the cyst with blood flow. I do not see RO again til Nov 27 but unsure if there is much point in seeing her without seeing neurosurgeon. Oh well, I cant answer my questions, will phone and see what the office tells me. Got to get my own questions answered.
Well, I hope everyone has a good day ahead and in pockets for those who need it, in my own pocket to get done what I want to get done as well.
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Ah @mara51506 I wish I could give you a big hug. It darn well hurts with the lack of family support, even with a phone call initiated by them. I think we all should have nurse navigator to handle those questions. We should not have to guess, suppose, or fret over proper instructions. If portals are suppose to be the answer, well I beg to differ. It took a week to get a response last time I used it and that was only after I posted the second time.
Our weather is going to plummet from 79 to 29 withing 24hrs! DH says he might have to wear a t-shirt. lol.
Best wishes to all for good scans, stable "Mabels" (borrowed that from a prior breastcancer member) and warmer weather.
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@shanagirl In your pocket for Ro tomorrow and getting started with new plans. Hugs❤️
@irishlove UGH wth with the clerical errors , cmon people get it together! Agree, being labeled with diabetes is a big oops and needs correction. I hope an another angel flies by and gives you help with this. Stay warm..brrrr , chilly for Floridians!
@mara51506 Wrapping you in a big virtual hug. I hate to hear you're sad and I hope you have another heart to heart conversation soon with DB. When is your birthday?? This week?🎂
@intolight Hope you get rid of your cold soon and are feeling better for scan day. In your pocket for Tuesday and in my own pocket for CT on Friday.🤞
Wedding venue tasting went very well, everything was delicious! We all went home with plenty of leftovers for dinner tonight. Holding my breath for CT on Friday. I'm praying for stable as I don't want my DD to worry about my health during her happy moment.
Praying for a nice smooth week for all here, waving hi and throwing kisses to all you beautiful ladies here❣️
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@cookie54 @irishlove I am planning to phone DB this week. Sadness is not constant for me, I feel it for a bit then it passes. I am more interested to know what is ailing SIL then anything else. In some ways, I like the autonomy it gives me to do what I wish with the house, getting organized etc as well.
When it comes to getting some info on neurosurgeon referral, phoning RO office would be a place to start and go from there. I am not too worried at this point, feel like if brain was an emergency situation, stuff would happen quickly for me as it did last time. Still more info is needed. Still need to take picture of ambo ride and prove disability from sept. Did not get around to that yet.
Laundry has been started, need to spin and throw in regular dryer, other dryer cleaning up a towel used to pick up a mess on the floor. Need to consider some clothes to put in wash as well and use the hanging dryer in bedroom if regular washer not going. Bedroom and living room are on different connection than kitchen and bathroom. I still have the other heated drying rack that has a heater at the bottom. The cheap wee washers are dying one motor cuts off after 20 seconds but I will not replace it, can soak stuff before wash if really stained or soak silverware as needed for dishes. There are uses beyond traditional washing. Even though they were only 20 bucks and cannot feel bad about that. I will figure it out and again, no buying it again. Bras can be put into mesh bag and spun then hung up with the hanger, same with undies or other delicate items. I can also use the hanging dryer and tumble for less time. Not sure yet either.
I am going to have two meals with the delicious chicken I cooked up in some taco and cheesy old elpaso, fantastic stuff. Probably microwave an egg with some beans in microwave and some garlic and butter, once done in microwave, let cool, put in the chopper with some cheese and put some of the chicken in fridge with a spoonful or two of the pasta I mixed together, put all in a hot fry pan, stir around a bit and turn off heat with a lid, that would be good or save egg for dinner meal, I will have to see what I feel like.
EDIT, did add an egg to a hot frypan with butter melted at bottom, added some shredded cheese, rest of the combined queso pasta and penne pasta to the pan. Put some beans and the seasoned chicken in there too. Mashed everything together and am waiting for it to get cool. No chopping of anything, just wanted an easy meal and to finish beans in fridge, try to use them up in 4 days or so. Tonight's meal will also feature the chicken but may be combining with the veggie stir fry mix, heat that up and put in same pan, mash up more chicken as well. Also was thinking out chicken dogs, not seeing an issue with using those or beef dogs which are less expensive on to regular hotdogs. Put together a sample order for the future and I could save a bunch of money getting those instead. The seasoning would and could be the same too.
EDIT. the egg, pasta dishes, shredded cheese and ground chicken with beans were delicious, could not finish it all but really was so very good. Heating up, dumping in the frypan and letting it all cool was really good. The cheesy seasoning by old elpaso is a revelation to me. Next time I order stuff from walmart I will keep what I put together in a sample order. Also have added a crunchy cheddar fried onion seasoning to the list. Like I already said, not ordering now, going to wait 2 weeks I think because I still have a ton of food. Option two sees me take Paratransit over to Walmart myself once the snow melts.
I hope all are taking care and having a good day, I am in pockets for all as well.
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Happy Birthday, Mara! Hope that you have a good day with good things to eat, whether you go out or stay in.🎂🍕🍨
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Hope you really enjoyed your birthday and wishing you many more!
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@mara51506 Happy Birthday Mara. I hope you find special joy today whatever you choose to do.
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@chicagoan and @eleanora Thank you for the birthday wishes. I have nothing on the agenda beyond getting some birthday treats for food. I spent 35 dollars for some chicken dogs that I will chop up and cook in the frypan, add some taco cheesy seasoning and cheese, got salad as well for my meal, many options available. I think the swiss chalet would have been decent but I can get more food with the Walmart order. I will post later what I come up with. Less than 20 mins and delivery from Walmart is on its way already .
As far as today, looking to continue the neverending floor sweeps, keep organizing my container, last spot that is crying out for it is in front of the front closet, put recycle stuff in the container with lid and it will all look really good.
Got some laundry underway and some pants to wash, will use the hang up drier as well since it gives me a lot of pleasure, need to wash up some yoga pants.
We got a lot of snow overnight BUT we go above freezing for a bit til end of November so it will not be sticking around. I am just so sad about that. 🤣
After I eat, I will continue on with chores, still calling RO to look into any progress with referral to neurosurgeon. I have social worker call on Thursday but no services I need at the moment but that is OK, if anything comes up, phone RO for another referral to social worker.
I will post with what I make for my meals today, not expecting DB or SIL at all and that is fine. Just called SIL but not available, left message I was hoping she feels better.
I do hope all have a really good day, in pockets for everyone as well. I already sang Happy Birthday to myself as well when I woke up.
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@mara51506 Happiest of birthdays to you! Hope your day is going well and is filled with some of your favorite meals. Hopefully you have a nice sweet treat too.🎂🎉
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I decided to have leftover ground chicken mix, heated up in a pot, put some of the cheddar and onion mix and also added a good portion of salad, not sure what binders I will use, got plenty of them, chicken dogs will be utilized with eggs from a frypan this evening, just cutting them into smaller pieces and add my different seasonings to it as well.
I spoke to DIL and DB, they are visiting someone in Alberta so DIL must be feeling better and that makes me happy. DB even came to the phone to wish a happy birthday and that was nice as well.
Going to make up eggs with a frozen fried rice in a fry pan later, the leftovers were very good as well.
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Happy belated birthday, Mara.
Saying HI to all.
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Happy Belated Birthday dearest Mara🥳🥳🥳. Hope your day was wonderful!
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Thank you for the birthday wishes.
I am ordering a burger meal from my regular burger joint and getting some onion rings with cinnamon donut holes. Getting a burger with cheese and bacon with tomatoes, black olives and galic mayo. Onion rings as well, should be pretty good.
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Sounds like a feast. Enjoy
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Happy belated birthday Mara.
Hope you had a nice day.
The weather cooled off quite a bit. I was able to take a nice walk.
Hope all is well with everyone
Tanya
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HAPPY BIRTHDAY SWEET MARA! I'm late for an important date, your birthday. Gee I hope you had a wonderful, peaceful and lots of good food in your belly kind of birthday. Good to hear SIL may be doing a bit better and DB remembered your birthday.
In pockets for everyone who has scans and MO visits coming up. And for life in general.
Well 4 days of antibiotics down, 3 to go for UTI. This has held me up from restarting Ibrance, which was due to bacterial pneumonia. I was suppose to restart Oct. 13. I saw, MO on Monday and he wasn't concerned about the delay. Did learn that Xgeva efficacy is very close whether dosing once a month or once every three months (which is what I have been doing). I believe I had read less risk of osteocronosis by not dosing monthly. Hmm..
The birds were very active in the yard today. That cold snap most have triggered them to feed heavily. And the squirrels. Bobette (the squirrel with the short tail) even hit the bird bath for a drink. We haven't had rain in many weeks. I covered most of the tropical plants and those I didn't cover, came out just fine. Only damage was to coleus (spelling?) , which I cut back until I found green in the stems. Sitting in my favorite chair watching the antics of the birds, squirrels and the crows delights me so. I am blessed my sweet DH brings up large bags of sunflower seeds, mixed seeds, peanuts and dry cat food. I put that out for a stray cat or two and the raccoons and opossums.
Hope all are as well and finding delight in the snow (if your enjoy it) and the Northern Lights. It was visible from Flagler Beach, which is not far from us. Imagine that, northern lights in FLA.
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Thank you all for the birthday wishes, @irishlove I am sorry you had UTI but glad you are almost done antibiotics.
It is very sunny today, we are going well above freezing and will stay above freezing for the next couple of weeks. I don't mind. It is recycle day, more paper bags to dispose of. I put away blue bags and I have put them somewhere that is not immediately visible to me. I will find them though. I also need to check bin out back I use to see if I put recycling out back. My walker is still tucked in out back, it is a covered back section so it has not been through the elements. I did see the coolest thing ever, it converts from a regular walker to a motorized wheelchair. Pretty sure it is thousands of dollars though and unnessary for my particular needs.
I am also tackling laundry, what else is new, I love it and have some clothes to dry out on a rack and some regular cleaning cloths. Got my ambo bill settled I think, if on disability we are not supposed to pay, I will see. Took pictures of the receipt and my monthly statement. No printer at this end either so had to take pictures and email the images. If they don't accept the email I sent, I will look at paying the 45.00.
Not sure what to have. Got chicken dogs which I am unsure I really like so thinking could cook the heck out of them first in microwave and then ground them up with some cheese and beans, I will decide a bit later, not hungry yet. If it turns into something fantastic, will post it.
Social worker is calling today re services I may need, I don't actually know what is needed. Nursing care is not needed. I think I will let her know I have not been referred to neurosurgeon as of yet so have nothing to request yet. Once I am referred, if service needed will get another referral to SW. I have appointment with my RO on the 27th but have yet to call and ask if they know if or when neurosurgeon appointment is.
I do hope all have a good day and in pockets for all who need me.
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OK, talked with SW today, she understands me not knowing what services I may need so instead she will phone in a couple of weeks. My RO appointment was pushed to Dec 11, they are trying to have a followup after neurosurgeon appt, I did get the extension of the office of the neurosurgeon so I will call Monday since they are closed until then. SW thinks I sound pretty relaxed about the brain thing and I said, I do not know what will be involved with that so no point worrying and upsetting myself. Helps when I have a general idea on what benign drain or removal may look like or a metastatic cyst which would involve surgery to remove and radiation again. Been there done those.
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