STEAM ROOM FOR ANGER
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All of you are helping me in ways I cannot describe and I sincerely thank you for caring. There are so many people with cancer, all kinds, and all of it truly sucks!!! I know I will move on with life and that death is a part of it. I still grieve lost loved ones (like my parents), and since I already experienced it, I know that time does help. Also, the fact that me and the kids were by his side when he went brings me MUCH peace. All he ever wanted was to be loved and accepted since he did not have such a great childhood. So glad we were able to give him that throughout his life. He also gave us many gifts as well. He touched so many lives. Today I thought I need to take that as being helpful in my grief instead of feeling overwhelmed by all these folks. What if he wasn't that way and I had no one checking or asking me how we are doing or sharing their own stories and wonderful memories of him? They are grieving too. I pray for people who don't have this and are all alone to deal with it.
This morning I went to the cancer center for my labs. While checking in and answering the questions they asked is my emergency contact...….I felt a wave of oh no she's going to say his name and I'm going to lose it...……...but --she said my daughters name and I exhaled and got through that. The techs in the lab extended their condolences, again, because he was such a character, they all liked him. He made them laugh. They admired how upbeat he always was while there. I exhaled again. It felt good to breathe like that. Then, tech said Sheryl over next door in the office wants to see me about my appointment. She is the one who took care of changing my contact information. I thanked her. She then explained about the change in doctors, offered to reschedule, but I said I'm Ok with this, see you next week. Apparently, my MO won't be coming to my local location after Sept. I guess this sort of thing happens a lot, especially when under care for a number of years. Things change.
So, I made it through going into the building and seeing these fine folks. I'm not as anxious now. My one ear is still noisy but I won't let it drive me crazy. It's just reminding me to breathe, keep going, a day at a time, and it will eventually stop making noise and leave me alone! I did check google and tinnitus can be brought on by stress.
Thank you all again, for giving me this space to vent my feelings. Today is going better than yesterday, I'll take it. My sister and fam are bringing dinner over later, looking forward to it.
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ctmbsikia
It sounds like everybody at your cancer center knew just what to say and do. And I love how you're sharing such wonderful memories of your DH. It makes us not only picture him, but know you better.
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This morning I put in a small window AC unit all by myself. We have a larger unit, but the window for that unit with the larger 220 volt receptacle is in dire shape. I'm also supposed to be getting the electrical panel upgraded, which is under that window. So I didn't want to mess with installing it and possibly causing a disaster-like the window frame totally collapsing, or the condensation getting down into the wall and leaking into the panel. Yikes! I shall be jumping up and down later today or tomorrow to see when the landlord is going to get started with these repairs. Shockingly, so far, this little unit is cooling the living room, kitchen, and bathroom. We'll see if it can stay cool through this afternoon with temps going over 90 degrees (and humid) today.
It was nice to see my sister and brother in law last night. She had a PET scan last weekend and sees her MO today. Unlike me, she says if they don't call she waits until her appointment to find out her results. There was no call, so I will check in with her later to be sure everything is still stable. My daughter went home last night, she had to do a school parade today, and her bf is off. Had to take some melatonin to get to sleep, but boy does that stuff work! I don't normally need anything, and thankfully there's no ill effects. Woke up feeling fine. The noise in my ear is still there but on a lower, lesser scale. I'm hopeful I will have an OK day.
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Yesterday afternoon hubs sister that lives in WY called. We spoke for close to 3 hours! During that time I had some wine. Next thing I knew the bottle was gone. Whoops. I got no work done but there wasn't that much to do. Also spoke to a friend, my daughter, and called my sister to see how she made out. Her PET showed some uptake, not awfully higher than last scan but enough that she will be starting another bone med. I can't remember the name (thanks to the wine) She is on Xgeva and the AI, I think they are adding Fosamax shot? She was in good spirits. I also tried to reassure her that there's still lots of treatments to try, and she is glad she's not to the point of having to do Ibrance just yet. That, I think scares her because of the side effects. She goes back next few days to start the shot, so if she doesn't call me, I will check in with her next week. First progression since diagnosis in late 2014. Not great news, but not the end of the world either. She does wonderful at living her life, and rarely complains. She's an awesome sister.
I wish I could go back to the days of being oblivious of anything cancer instead of feeling like a cancer junkie now. I got a text to confirm my own appt. It gave me anxiety-can't they wait until tomorrow? The appt. is Monday. Perhaps it's just fear. We all know that, right? I trust I will like the new Doc, and that everything is just fine. Will be nice to breathe again when this is over!!
Work is caught up and not real busy, which is sort of scary. I will be going into the office next week. I think I'm ready. Going to write some more thank you notes to get through this afternoon.
Got a text from another friend, they're dropping off dinner tonight. I haven't cooked a whole meal in weeks! I can used to this. I am truly blessed to have so many caring friends, family, and all of you. Wishing you all a great rest of the day!
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Hi Ladies. If this is not allowed, please delete and accept my apology.
I am reaching out for a dear friend. Have high prices in prescription drugs hit you hard? Now or in the past? Would anyone like to share their story with a government board that is right now asked to approve yet another BigPharma merger between two drug makers? My friend is coordinating letters to the Federal Trade Commission to make sure the voice of consumers is heard. Please comment and send me a private inbox message if interested in learning more and sharing details of your personal experience with expensive prescription costs. Deadline is midnight tonight. Sorry for the short notice. My friend came to me asking about my experience as well as the experiences of my sister and mom. Fortunately, we all have very good insurance and have not experienced high out-of-pocket cost.
Hugs!
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ctmb, exactly what side effects is your sister worried about with Ibrance? I've been on it for 4+ years and had never had ANY AT ALL. Well, a few people have problems with white counts and a few other minor things here and there. And, of course, poverty. The stuff costs around $14,000 a month. I, however, have never paid a cent. My Medicare drug insurance pays for most of it and it is fairly easy to get financial assistance for the co-pay ($3000 for first month, $666 after you drop through the donut hole which happens after the first month). I have lots of experience with that and my help is always available.
I'm so glad you are chugging along. I usually have a list of possible accomplishments for a day and do what I feel like doing of those things. Then whatever happens, I feel like I got something done. And I don't worry about adjusting to the "new normal." I never liked the old normal.
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Agree with Jaycee. I’ve had a few se, that last a month or so, then go away. Been on it about a year. Cost is awful, again, ways around that too. It’s a good med, keeping me progression free so far.
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Good to know about Ibrance, thank you all. I will keep that in mind for the future. Hope you all stay on it for a very long time!!!
As if I didn't have enough on today's agenda, coming back into work, meeting a new Dr. this afternoon, getting my 2nd Prolia shot, NO, my husband's mother passed away this morning. She suffered a stroke. The facility did let his sister and brother in to be with her. Thankful for that at least. That's better than just getting the phone call! Three weeks and a day apart. I hope they're behaving themselves up there. My head hurts.
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My head still hurts. Crazy emotional day yesterday. In trying to keep on schedule, I kept my appointment yesterday. The Dr. I met was actually the oncologist on call at the hospital when my husband was there. I had to apologize as I said I don't remember speaking with you. He was very kind and when I told him of my mother in laws death that just happened, he said OK lets just do your Prolia shot and I was like -YES just get me out of here. Well, low and behold my insurance company will not authorize this med. So, no shot, no exam, a colossal waste of my time! I just want to be done with all of this!!! Every bit of it!!!
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ctmbsikia I wonder if your insurance company did what mine did--Prolia is no longer on the formulary, which is beyond annoying. I started Prolia last September, and it was covered then. This March, none of it was covered. So I paid $$ and then had an allergic reaction from the shot. So frustrating and now when I see my endocrinologist next month, we have to find another drug.
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Oh and I have a small rant. I broke my right foot one month ago (seriously, the bone just broke while I was running--didn't trip, stumble, fall, nothing like that). I've been in a walking boot since then and I think because of that uneven gait, the base of my spine and my left hip hurt like crazy. So annoying, it's bad enough my bone broke, I can't run, I can't do the marathon i was training for (which was supposed to be this Saturday) and now the base of my spine & left hip have joined the pain train.
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edj3 that's awful!!! Will be watching to see what med you will be offered and to see if it works for you.
I went in my portal to check my last Dexa which was my 2nd one ever last Dec. It says:
In the spine, there has been no statistically significant change in bone mineral density since the prior study
In the total proximal femur, there has been significant decrease of 0.041 g/cm2 or 5.7 % in bone mineral density since the prior study.
I'm just not up for the fight. I will be shocked if they somehow get it authorized and they call me to come back in. I'm betting they won't and I'm just not going to care or fret about this anymore. Can't do it. Done.
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ctmb, you mentioned taking Melatonin for sleep once. I was thinking of trying that. What kind do you take? What dose do you take? My Ativan rx is problematic due to its "controlled" characteristic. And Walgreen's keeps screwing it up. I got it straightened out this morning but still want to try switching. How does it work? I usually don't need help getting to sleep, just staying asleep. Thanks for any advice on this.
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ctmbsikia, So sorry about your mother in law. Wow it keeps pouring. What a mess about your prolia. I take generic fosamax and in a year have built back up to better than before I had such a marked loss from the Ai’s. Hope you can find something that works and is approved.
Edj3 yikes the foot break! Hope it heals quickly and you find out what happened. I broke my elbow just over a year ago, breaks are not fun!
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I take 10 mg melatonin. Get it at Walmart. Cheaper there. Most nights I fall asleep in about 20 minutes. When my brain won’t quit running all bets are off. It’s supposed to help you fall asleep quicker, not necessarily stay asleep all night. Unless I’m really upset about something I do
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Thanks, Spookie. Brain running is a problem as is falling asleep while watching TV earlier. I get up to pee 3-4 times a night so there's that. I was doing fine on .5 mg of Ativan until recently. Because of the rx issues, I had none for the last two nights. Just went cold turkey. Not that bad but two nights in a row with 4-5 hours gets hard. I even got a few calls and other medical stuff done this AM. I'm going to look on Amazon for Melatonin.
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ctmbsikia
I'm so sorry about your mother-in-law's passing. What a horrible time you're going through! Wish I could give you a real hug.
What's with Prolia? When my MO was discussing AIs, she mentioned that one benefit would be that insurance would cover Prolia if used to counteract the AI. I wound up on Tamoxifen instead, but kept that in the back of my mind if I wanted to switch. Guess that won't be happening. Sheesh.
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AliceBastable Prolia may be covered by your insurance. Mine changed their formulary of approved drugs so Prolia is out while Forteo is in. Not excited by daily injections (man I hate needles) but I'm less excited by a second broken bone and this one after two rounds of Prolia. I'm not ready to be swaddled in bubble wrap and stuck in a corner just yet.
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jaycee, I am pretty sure the melatonin I took was just Nature Made. I agree with Spookie, it will help you get to sleep but won't keep you asleep.
I may re visit the Prolia thing once I receive the denial letter. I looked into the criteria and coding needed for approval. If not, there are other meds to try. With 5.7% loss in my hip in a year in a half, I should probably pay attention to that instead of just doing nothing. It's just not very high on the priority list at the moment.
My mother in laws service is Friday. I am REALLY nervous about walking into that funeral home again so soon. Their services are exactly 3 weeks apart. I am enclosing a pic of the two of them. Fat chance they are behaving themselves now that they are reunited. I do find much peace in that they are together.
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Oh that's a sweet photo
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Ah, you can see the love in that picture. It's beautiful. My guess is she wanted to go home to her boy.
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CTMB I very much hope they are NOT behaving themselves! Hugs to you in all this.
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ctmbsikia
Those do NOT look like well-behaved personalities, but they sure look fun. Well-behaved people are usually a pain in the butt. We will all be with you in that funeral home with support and love.
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ctm, with you on Friday!
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Ctm such a fabulous picture, the glee in their eyes, awesome
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love the love in that photo.
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Hi ladies. I am hanging in there. Last Friday went alright. My mother in law was being cremated after the service so I took the flowers I bought for her and we placed them out on hubs grave. My sister in law and her family also came out, so he had lots of fresh flowers for Father's Day. We then went to brother in laws for lunch and we all visited and ate outside and were done before it poured rain. Saturday I started in my bedroom closet. I had pulled a tote out looking for pictures and was horrified of the mess it had become. Since hubs was a handyman I decided to get rid of all the work clothes, underwear, sock, old work boots and sneakers. I kept the good clothes, hung them back up after I cleaned. It gave me some more room. I didn't cry until I checked the mail and saw his life insurance check arrived.
Sunday the kids and I took a ride down to the Bay to check out the cottages. My son brought along his trailer and we spent a few hours loading up a pile of debris that has been there for 2 years. The other tenants were complaining and since I do not have an actual paper lease to know who was to get rid of this, we just did it. In fact, my son even hopped onto the bob cat machine and made it look nice. The cottage still has a long way to go. Hopeful between hubs cousins, my brother, and whoever else, we can come up with a plan to keep working on them. I was at least grateful to finally get my own access card for the gate, and I tried the locks and keys to make sure everything worked. My daughter's friend gave her a wind chime with an in memory of on it, so we placed it in the tree right out front of our cottage. I was a little shaky but didn't cry too hard, it was hot, I was sweating, and was also hungry. We got take out on the way home and ate at my son's house which I also re-arranged while there! He didn't mind, he's young and a few pieces just needed moved around to make it look more homey and not like a dorm room!
I'm back in the office, my daughter went home so I am I am trying to get used to being by myself. I'm not really scared, it's just different. I do find that doing a chore or two at night instead of leaving it for the weekend like I used to is helping pass that time. Sleeping OK for an hour or two but then getting up. If I have to take something I will. Last night I had a glass of wine. Ear still makes noise but not like it was. More sporadic now. So, I have 2 huge projects to finish. The beach, and I also went over to the storage place and paid up to Aug. 1. When my mother in law was abruptly placed in a facility, whatever was left in her house my husband put into this bin. I understood why he did, it was his way of helping, but no more. I can't afford to keep paying for stuff to just sit. I am going to try and sort it, or get some idea of the inventory. I will give the family one shot to take what they want because pretty soon it's all going. There are some things at my house. I don't want too much stuff. It overwhelms me. I think my son is going to take care of his work van. It is parked over at a neighbors so I don't have to look at it. It is a complete disaster as well. That's all I got. Keeping busy is going well for me right now.
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You've got so many changes in your life; please be good to yourself and don't expect yourself to do more than you can handle.
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This morning I'm on the Prolia claim bull crap. I just sent an email to my providers claim dept. It may take a few days, but we'll see what happens. I sent them my Dexa scores and this little piece of info I found on their site:
Prolia is proven to treat patients at high risk for fracture receiving adjuvant aromatase inhibitor therapy for breast cancer.
Prolia is medically necessary when ALL of the following criteria are met: o
Diagnosis of breast cancer; and o Patient is receiving aromatase inhibitor therapy; and o
History of failure, contraindication, or intolerance to oral or intravenous bisphosphonate therapy;
and o Prolia dosing is in accordance with the United States Food and Drug Administration approved labeling: maximum dosing of 60 mg every 6 months; and o Authorization is for no more than 12 months.
While I don't have history of failure or intolerance to other medications, my question is should they deny Prolia again, should I ask for another drug? Is anyone doing an IV bisphosphonate?
Thanks in advance for any insight.
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ctmbsikia, you might check this thread about Prolia and getting reimbursed. You do have to have insurance that doesn't cover Prolia. I haven't tried myself (I should).
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