My Husband, My Life, My Love, My Family, My Cancer

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  • irishlove
    irishlove Posts: 698

    Yay EAGLES!!! My goodness they ran away with that game. I think I could hear my son at his favorite bar in Charlotte hooting and hollering, too. Gonna be a good Super Bowl in New Orleans.

    Talked to sis today. She said the actual temp. was -3 degrees in Reading, PA. Not sure where Mel lives, but seemed like most of PA had horrible temps. She said the snow and ice are still laying as it hasn't gone above freezing for days on end. BRRR. Her neighbor has broken pipes.

    Mara, that's ridiculous to have such poor service from paratransit at this time. I understand alot of people will park their cars and use the service, but they should know that, too. Add on more help is what I like to say when someone or service says "we are short-handed".

    In pockets for all your needs and stay warm and safe. God bless my angel for the Ibrance 75mg. Still no decision from Pfizer. Maybe tomorrow??

  • mara51506
    mara51506 Posts: 7,162
    edited January 27

    Mel, we do all miss you and when ready will be really happy to see you again.

    It is a lovely sunny day. Woke up not too long ago, got laundry going, have a ton of boxes to flatten and put out in recycle bags, some garbage as well. Many bags, many trips I can see happening. More boxes arriving for 4 bags of cat food. Amazon made me purchase two at a time, that is all right. Cats will be happy. Cannot believe how much the cats like the crumps, kind of like seasoning that is beef flavoured but both clean their bowls and seem to really enjoy it.

    I have decided to put aside 5.00 per week to pay for Walmart deliveries since I do enjoy the delivery instead although not needed currently, later I may need it. Also think I can put aside some of my rewards to go toward groceries as well. I do have a lot of food to get through though. Planning on chopping in pizza to some eggs with a bit of cheese. Egg can be prepared with frozen potatoes or diced peppers as well, microwave then chop with pizza, cheese and egg and reheated again. Lots of options. EDITED, I did chop up the egg, barbecue chips and peppers with the pizza, used mayo as a binder and used sour cream and onion seasoning, was good and very filling.

    I am hoping everyone has a good day, in pockets for everyone who needs me as well.

  • cookie54
    cookie54 Posts: 1,221

    threetree Your walk by the water sounded lovely. There is something about water views that heal the soul.

    Mara Hope the beautiful sunshine today dried up the sidewalks for ya. Also hope you got through to paratransit by the end on the day.

    Irish Woohoo for the Eagles, so exciting! Was nice to watch the second half more relaxed instead of a nail biter as usual. Fingers crossed , just one more to go! Fingers crossed for your Ibrance too.

    Hi to all here hope you had a good day and have a restful evening.

  • mara51506
    mara51506 Posts: 7,162
    edited January 28

    Cookie, the sidewalk was actually dry most of the way and I put out a ton of flattened cardboard so that worked well for me. We are supposed to get a clipper system come through today, nothing much yet but we will see. I did book the paratransit ride for tomorrow and am just on hold for the ride for my echo on friday. At least there was no busy signal to deal with.

    Watching some golden retriever videos with ads for money. If no commercials there will put up cooking videos instead. Got some sweeping and vacuuming and laundry, got a couple of throw blankets to wash up, I like those because the spinner in the larger one can handle those. I love the sound of both washers going at the same time.

    Need to use up more of the pizza. Planning to make white rice first, chop up pizza with frozen pepper and heat the rice, chopped pizza and pepper and use sour cream. I am almost done the pizza so will finish it up today. Then my priority will be egg and ham sandwiches. I have black forest ham slices in the fridge so will defrost one of the packages and use it up with sandwiches.

    Hope all have a good day and in pockets for everyone who needs me.

  • threetree
    threetree Posts: 2,408

    Cookie - Yes, that walk did amazing things for me, and it was too short lived. Our sun is supposed to go away though pretty soon, and we will be back to our usual cloudy, "drippy dreary" stuff again. I grew up in a small town-ish area south of Seattle and there was a marina there too, with lovely views of the water, Mt. Rainier, and the Olympic mountains. I miss being that close to the water and seeing those views every day. That's one of the reasons I went up to the small town north of Seattle the other day - to get a lot of that same look and feel back. I'm only minutes from the water where I am now, but just no constant daily views like I had all those years ago. Those mountains and the water really get in your bones; as so much about where we grow up always does, and sometimes you just don't feel right without it. Also glad for all of you Eagles fans. I'm not a big sports person, but if I was following, I'd probably root for the Eagles too. Whenever teams not from my locale are involved I invariably root for the one closest to me, or one from a place I had been at some time. Way back in the 70's I spent about a month in Philadelphia and did get over to NJ for an Atlantic City boardwalk day out during that time. I have always retained a certain fondness for that stay, Philly, and the little bit of NJ that I was able to see. Also had some family from PA a couple generations and more back, so go Eagles!

    Irish and Chicagoan - I continue to be sorry about the troubles you've all been having with the Ibrance. I've been doing Verzenio and so far my clinic has managed all the paperwork for me, and I've gotten it for free. Eli Lilly though did just tell me that I had to do a new application, when I went to order my new prescription for this month, so I hope I don't run into any problems. My clinic is on it again though, and they are just going to update me with any info. I just wish Eli Lilly had told me I had to "renew" for 2025 back in November or December, instead of waiting until I was running out of my current pack of pills. I wish you both luck with the Ibrance, and yes Chicagoan, $150 isn't too bad, but over time, it could be a lot.

  • intolight
    intolight Posts: 2,833

    @threetree Yes, Lily requires an annual renewal for Verzenio. I did mine in October and everything was as before. You just need an updated IRS income page. You should be fine. I also get mine for free through their program which really helps. They have been quick to automatically refill the rx each month.

  • threetree
    threetree Posts: 2,408

    Intolight - Yes, I've found Lilly real good about sending refills, once I have the prescription all in order, and I've appreciated that about them. This time though, I didn't hear a word about re-applying for 2025 until late last week. I'm glad you got re-upped in October, so you are good. Just don't know why I didn't get the word sooner. Also my current (and last) pack for this week/year (half gone) says I have 2 refills left, and as you probably know, those refills are for 4 weeks at a time. I asked if they could send one of the refills and they said no, that what's on the package doesn't always reflect "the truth", and in this case "the truth" is I'm apparently no longer able to get any Verzenio until this 2025 paperwork gets taken care of, in spite of supposedly having 2 refills left. Oh well, it will get sorted out one way or another. Again, I'm just glad you got all taken care of in plenty of time.

  • mara51506
    mara51506 Posts: 7,162

    Threetree, in your pocket for getting your Verzenio. I am sorry for any drug troubles people are dealing with and hope they all get resolved soon.

    Up earlier than usual. Had a lighter sleep than usual but rest nonetheless. When I sleep like that, I have more dreams that can be entertaining at times as well. The alarm was cute too.

    Got Herceptin. Paratransit is insisting on return trips from hospital now where as before, they allowed me to phone for a return trip when done. The person on the phone said they are much busier and I believe that. I will have to see how it goes. If I have more than an hour, either stay at hospital and wait or cancel the ride and take the bus home. Got Echo on Friday as well.

    Washing clothes I have been wearing over a week, I wash every couple of days but I tend to favour one outfit at a time. Weather is warmer so we will be getting more snow, rain and freezing rain but that is OK, cleats can take care of what is needed. I have engaged all three washers as I have some handkerchiefs to wash, it did not come out soft and felt like sandpaper. The wee washer will not lose the handkerchief in the plumbing

    Starting out with an egg sandwich, not sure what to have later. I am going whole hog on the eggs and english muffins for now since I still have just over 2 dozen eggs from Costco and a lot of english muffins, glad they don't seem to go moldy though. I think in future, less different foods will be in the cupboard, beans, rice, cheese, pasta and eggs. Frozen and pantry pasta are fine. Lots of seasoning are the order of the day to make everything taste different, tired of pizza right now as well, can leave the minipizza but not full size. Going to dispose of the rest of the larger pizza. Not too much left but do not want to keep using it.

    I do hope everyone has a good day, in pockets for anyone who needs me as well.

  • mara51506
    mara51506 Posts: 7,162

    My goodness, have to say that I am tired today, at least my mind wants me to know that. Trying to tell myself I am looking forward to the end of the day instead as my mind saying it is tired does me no good. Going to start telling myself that and try to use that as the repetitive thought instead.

  • mara51506
    mara51506 Posts: 7,162

    Well, Herceptin went smoothly, had to call for pickup earlier as Herceptin happened very quickly. The driver told me he came in the front but I did not see him so he was a little irked but got over it quick, turned into another Chatty Cathy so the driver, other passenger and I were yapping a lot which was nice.

    Got a rebate cheque from my province, don't know why but will take it for sure. Could come in handy with budgeting for next month. I am also starving as I usually am, got a cheeseburger happy meal with fries, added bacon, extra onion and lettuce with mayo and an apple juice, the fries will likely be salted I think. I find the happy meal the least expensive and can dress up the burger and still costs less than a big mac by itself.

  • irishlove
    irishlove Posts: 698

    Hello ladies. Sondraf, I'm sorry you are still not home. Sometimes don't you feel like saying "to whomever makes those medical decision in the hospital", how about talking to me first. Everyone is always so busy it seems and the patient is lost in all the hee-hooray. Hope you get some lovely time with your Mom. Mom's seem to fix everything. Mine is gone, too.

    Onto to this Ibrance debacle. I rec'd an application from Pfizer in the mail 2nd week of Nov. Except it was for the previous resident at this address. So I promptly called Pfizer and two weeks later I rec'd the application. I filled it all out in 1 day and dropped it off at Oncologist office. Financial Aide Lady said they use a 3rd party, RX to Go, so she scanned it in to them to fill out Oncologist portion. A few weeks later I rec'd a demand for Medicare Payment Plan Program, which I had enrolled or thought so. I told my insurance agent the urgent need to fill Pfizer request. He was here at the house going over yearly programs. I watched him note this need and DH wanted the same program, also, that would spread out the $2000 co pay for drugs for 12 months. Well he didn't follow thru, so I called him and left a not so nice message. Crickets. Called next day. Crickets. Called his supervisor. Aha, he called within 10 minutes and said he'd see us the following week. Bull shit, I called Humana and we took care of it directly.

    So I alerted both Pfizer and RX to go that we completed that requirement. Two weeks later rec'd message that we must prove we have that payment plan program with a CODE. Two more hours of calls and we got the code. Next day it was faxed to us and we faxed Pfizer and RX to go. Long story short, I went thru 2 reps at RX to go, never called me back. Finally the third one did and she explained that Pfizer is a mess with the program, that RX to go is short-handed (not anticipating Pfizer problems). I begged and told all of them repeatedly I am out of my Ibrance and have been. RX to go lady reached me today and said Pfizer now has all the corrected paperwork, but no decision will be made for 2 more weeks. Don't call them, they'll call us, meaning Pfizer. An angel helped me with a small supply, but I don't want anyone outside our group to know this. It is horrible treatment. I said I'd pay the copay, just get me my meds. NO was the answer. Just wait. I could scream…..

  • Sondra - good grief you have been through enough already. Thank goodness there is a plan in place and that your mom can come help. Praying that all goes well and you are soon on your way out the door🙏🏻🙏🏻.

    Irishlove - you too have been through a 💩 show with trying to get your Ibrance. There is so much incompetence in this world and it is so frustrating when we meet it ourselves. Praying for you that things resolve very soon🙏🏻🙏🏻. I can only imagine how worried you must feel.

    Here for pocket duty for all in need.

  • intolight
    intolight Posts: 2,833

    @irishlove Wow…such incompetence! You have been through so much to hit this snag. I will join in the prayers this gets resolved quickly. I wish I could help. What does your onc office say about it? Do they even know?

  • mara51506
    mara51506 Posts: 7,162

    Slept a bit better post Herceptin which was good. Just started some laundry in the repaired washer. Will spin in the bigger one next to the repaired one so cloths can go together, need to wash my clothes as well to freshen up.
    Floors, cat litter and possibly a blanket or two may be on the agenda too. Egg sandwiches will be featured meals, easy to make and they are good. Later would take an egg, add the potato cubes and peppers into it, chop and fry in some butter, use plain bit of mayo and ketchup as seasonings. Budget boosting with a cooking channel, the ad playing that will pay me is for a paint, it plays hungry eyes in the background. The paint drying is not boring but appealing I guess.
    The cats appear to be tiring of the crumps crumbles so back to the probiotic they do like and bought two for one, for the same price as on probiotic, no idea why but it is good.
    Planning to stay home today, do not need groceries at all and honestly not feeling energetic post Herceptin, can afford to skip the trip IF DB asks if I need to go out. I will find out. Not sick at all, just tired is all.
    We have some freezing rain coming Friday so that will not be much fun, may engage some cleats and salt the walk before tomorrow as I have Paratransit for my echo tomorrow. I will try not to use as much salt as I have been, coating the step is not necessary and also sweep off the salt as well.
    I hope everyone has a good day, in pockets for all, in my own pocket so I do not fall asleep on the couch tonight as have to be up earlier tomorrow.

  • threetree
    threetree Posts: 2,408

    Cookie - Here's to the mental health walk (I call them that too) and Buster! I just love that guy, and I don't even know him😉. Thanks so much for sharing his photos with us.

  • irishlove
    irishlove Posts: 698

    Oh Buster aren't you stunning. Nothing like a walk in lovely snow. Mara, hope it's rain and no other precip. Tomorrow is suppose to break a heat temp record here. Around 81! My kind of day.

    Appt. tomorrow with MO. The office does not know about all this baloney. They will tomorrow. Thanks for all your support. In pockets for good scans for all and for all your needs. Gotta go to bed early (for me), since appt. is early. Yuck..

  • mara51506
    mara51506 Posts: 7,162

    Well, wound up calling in sick, cancelled Paratransit and my echo. A wave of exhaustion like I have never felt, even in all these years of drugs and radiation crushed me around 7 am even with the meals. I also felt shaky too, was not sure if seizure related or just related to the exhaustion. Either way, could not find the energy to do much but wait for 45 mins to cancel the rides and then phone the hospital. I will let them decide when the next app't is or phone myself. I went to bed for 3 hours and feel quite a bit better now, not like this morning. Now will phone and see about getting another echo appointment. Going to start making myself go to bed earlier most nights, scale it back bit by bit.

  • threetree
    threetree Posts: 2,408

    Mara - So sorry you are not feeling well. Please get better soon! Thinking of you, and in your pocket.

    Intolight - I think I've got my Verzenio business straightened out with Eli Lilly. My clinic started working on the problem, but then Lilly sent me an email asking me to fill out an online form they sent. Had to create a user ID and password, etc. just to read there secure message. My clinic called with the same message and said that they could only do so much this year, but that new protocols, etc. were going to require me to deal with this electronic form from Lilly. Both the dr and I had to fill out forms for the 2025 renewal. The form they sent me wasn't real clear, and I had to keep going over it. Every time I'd hit "submit" they'd give me a message that I'd failed to do something, so I kept at and finally got it to submit. I got a message from them today saying that the application was approved and that they are in the process of sending me my Verzenio, so that's good. I told the person at my clinic how I had heard from someone on this forum (you) that you had gotten yours all taken care of in October, but that I had never heard anything about having to re-submit an application for 2025 until I was running out at the end of January 2025, and the pharmacy said they couldn't fill any more for me. The clinic person told me that yes, like you, most people get paperwork in October or November to get renewed and neither of us have any idea why I didn't get any. Also, my clinic person told me that things have changed with these drug companies giving things out for free or with discounts, etc., and she said that they now have to jump through more hoops than before. She said that some of the drug companies are now only offering discounted or "free" drugs as an absolute last resort and that they insist you apply for things like a "Medicare payment plan" (never heard of that) and/or a grant or some such thing first. You also have to apparently submit all of that paperwork to the drug company too, to "prove" that you sought all of these other possibilites first. I was glad at least that I didn't have to do any of that sort of thing. I just don't know how they expect "average" people to pay some of these exorbitant drug prices.

  • chicagoan
    chicagoan Posts: 1,383

    Mara-are you feeling better today?

    Threetree and Irishlove-I decided to just give up and pay the $150 copay. Last year it was so easy for me-the specialty pharmacy found a grant. I had to provide my income but they did everything else. This year it seems so unlikely as I read about the process applying to Medicare payment plan, then to Pfizer, etc. I suspect I wouldn't qualify so enough! Hope you each get a break. I picked up another temporary work gig that may turn out to be occasional income-it's actually seems preferable to jumping through all these hoops.

  • intolight
    intolight Posts: 2,833

    @chicagoan Excuse me if I am out of line here, but Pfizer has a co-pay assistance program if you have private insurance. They used to reimburse me the $150 each month. It has been a long time since I was on it, but if you go online you can still find it. If you are on medicare, it won't work. It's now called PfizerForAll. Just thought I would add this.

  • cookie54
    cookie54 Posts: 1,221

    mara Hoping you felt better today and were able to sleep better last night.

  • chicagoan
    chicagoan Posts: 1,383

    @intolight I was on that program for years but when I turned 65, I had to go on Medicare and am no longer eligible. The first year I paid $100 per month, last year nothing at all, so really I've had it pretty easy as far as co-payments considering how expensive Ibrance is. I appreciate you pointing it out in case I was still eligible.