STEAM ROOM FOR ANGER

I did something really dumb. I was on the phone catching up with a good friend the other night, it was over an hour-long conversation, and I think I took my night meds twice. The statin, gerd med, and the little white pill! Ouch. I tolerate this AI pretty well, but my left hand, shoulder, knee and ankle are aching more than my usual. So noticeable that is why I think I made this error. I broke out the pillbox now, so this hopefully won't happen again. I totally skipped taking anything last evening, drinking some water, and moving to try and get this out of my system. Should I take one more night off?

Turning the calendar started the appointment anxiety, which isn't as bad as it once was, but as you can tell, I think about breast cancer a lot. It could be the 5 yr. thing too. Hope you don't mind me writing down my thoughts of how this year might go. When I last saw the SO I left with the MRI order but no next appt. time. We spoke about the expense burden, and she was OK if I did an MRI every other year. I woke up the other morning remembering this conversation, so it was like a revelation to do just that. Skip this test and use the money for a vacation or something fun! It is a little much seeing both surgical oncology and medical oncology every 6 months. I will discuss with MO on the 25th. Next appt (July) with MO will be 5 yrs. of taking the AI. Do I stop this therapy, do another 2 years, see if my insurance will cover the BCI test? I did the CT5 something online calculator and it came up high risk. What bothers me is the unknown. My tumor was 4 cm with 1 micromet. ER+, PR+, Her2-. With these stats I feel the AI is my best defense against this disease returning in later years when I could be in my 70's. Anyway, that's the information I have spinning around in my head.

ctmb, I complained about the cost of prolia and the office hooked me up with the drug company to get a rebate. Idk if this works with tests and things, Just throwing this out there.

So why are these co-pays and high deductibles we're being billed for be almost cut in half when your bill gets sent to collections?

Did I just find a silver lining? My last MRI was Mar of 22 and I had a $700.00 balance and today I was offered a settlement @ a 45% discount.so I saved a little over $300. Since I was diagnosed in December and had the surgery and treatment in the following year, the bills were high, and I did the same thing back then. I paid a onetime discounted cost almost 2 years after the fact. The rest of the time on this "journey" I did my best to pay as I go. So, if you have a 3500. deductible just don't pay and if they offer you a settlement at 45%, then really your deductible is more like 1925.00.

I'd sooner not incur the costs at all, which is why I will be contacting my SO and skipping the MRI this spring. Not doing it. Cheaper for me to stay on the AI then do this expensive imaging.

Hi bcincolorado, hope you are doing well today. Do you have snow? We have had zero this winter. Rain, rain and more rain. It is nicer today with no rain the forecast for several days.

Saw the MO yesterday and he noted my concerns on possibly staying on the AI longer than 5 yrs. which will be up in July, so we'll see. He also said it was reasonable for me to not do an MRI this year and he would be able to write the mammogram order for me at my July appt. since I don't have a next appt. with the SO office. Got shot up with some Prolia. Yea! Finally looking forward to several months off now from any sort of dealing about breast cancer. Yes. Nothing to vent about today. I am glad he listened to me and I was in and out in 30 minutes flat!!!

Oh, bc, that's awful. I'm so sorry for your friend and her husband!

DH got laid off. Obviously there is never good timing for this. I’m just annoyed how much time I spend crunching numbers in the fall so I picked the best combination of health plan from his and mind and switched prescriptions etc and 6 weeks into the new year and yuck. Yes absolutely lucky that I can move us to my plan but money already spend so far this year while not tons is still on a deductible that is meaningless. And having to move some appointments around to make sure everything is covered. Minor minor things compared to the whole job loss but just trying to make sure I deal with all of them so he can focus on what he needs to (plus got news that a medical study I was signed up to be part and get some free dental services plus cash on the side that I was suppose to start next week was suddenly closed. The extra cash would have been helpful). I feel like i jinxed myself because yesterday I was saying no matter what happens this month it has to be better than last Feb

quietgirl,

I'm so sorry to hear of DB job loss and how it effects everything else. UGH. Because you did all that work to make the insurance work. There's a lot of extra work in everything that happens post cancer dx, isn't there? I hope that he finds another position soon.

I quit saying the expression shit show once I got on Verzenio...because it's literally been that. And more.

Hugs

Quietgirl, I hope everything works out. Been thru that a couple of times with DH. Luckily I was a nurse and able to pick up hours til something came along.

I'm so sorry, Alice. That is beyond angering and frustrating. The state of our healthcare system in the US is ridiculous. One could go on at length about the systems that perpetuate this, but when you're someone that is chronically ill, who has the energy to devote to advocacy to the degree it requires.

I'm not sure if this will be helpful for your friend, but this website lists organizations that help fund MS medications, and breaks down guidelines based on whether someone has insurance/doesn't as well as type of insurance they do have: https://www.nationalmssociety.org/Living-Well-With-MS/Work-and-Home/Insurance-and-Financial-Information/Guide-to-Prescription-Financial-Assistance

Sincerely,
The Mods

This is horrible, Alice. I am sure the stress caused by her long term difficulties in obtaining funding for her meds worsens your friend's symptoms and relapses. Even those with supposedly "excellent" insurance can run into difficulties like this when their caps are reached. The system is designed for quick fixes, not chronic care, you are on your own if you live longer than their actuarial tables predict.

Anger, loss, empty, scared, pissed off, tired. I was diagnosed in 2020, triple positive and I tried to be a good patient. I never missed an apt or was late. I took my chemo and radiation for 52 weeks, lost my hair, lost my mind. I was sick. I mean I was throwing up and sleeping on the bathroom floor for a year. I know a few people that have had no issues with chemo and I envy them and sometimes feel like a whimp. I had a lumpectomy in 2021, and then over the next 10 months I found cysts every month. And I was either waiting for an exam, a biopsy or results. I was just constantly waiting. Then my oncologist and surgeon both suggested I have a double mastectomy. They felt I was going to continue to have the cysts and living the mental nightmare. I had that on Nov 6th. I asked for a B cup or a small C and I was given a D. I hated them. Before I could do anything about them, my right breast swelled up like a bowling ball. I was dead asleep and I woke up feeling like was a clamp on my breast. I looked at it and it was completely deformed. I went in to see my surgeon and he admitted me to the hospital. He said I had seroma. He suggested surgery to remove the implants, he could replace them with smaller ones and insert drains. Did that. Exactly one week later my right breast started to swell up again. I immediately went back in and again he admitted me. He suggested we needed to take them out completely, because the first one didn’t show an infection, and the implant wasn’t staying in place. This last Friday, I had my implants taken out and they gave me a staph infection. I had to stay in the hospital for 3 days while they tested the strain to see what antibiotic would work the best. I felt I was treated horribly and without any empathy or compassion. The nurses left notes to each other on my progress and continued to state that I was difficult and cried. I was on oxy and was constipated so they gave me a laxative. I was on a weighted bed so they would know when I got up and they said for me to call when I needed to use the bathroom. Unfortunately, when those kick in there isn’t a lot of time to wait for someone to come and turn the bed off so I just went. They yelled at me and even wanted to see the toile† to prove I had diarrhea. I even had issues with the doctors that would make their rounds. Because they are a well known, highly rated hospital I think those staff members feel entitled to treat people anyway they want. I’m finally home. I’m completely flat on one side and the side with all the issues is concave. I wonder if that will go away. I’m afraid to go out in public, I am so embarrassed. I feel this is more of a self pity party more than a rant. I should be thinking positive but I am just feeling sorry for myself. I know so many women that have had it worse. I’m just so tired of all of this and dealing with the medical community

Trippositive, Even though we sign treatment consent forms which detail some of the things that can go amiss everyone (including the doctors) expects that the rare problems and unlikely terrible side effects won't happen. However, every once in a while someone is unfortunate enough to have a horrible experience. Yours was the implant surgery while mine was radiation. I found that the medical professionals almost didn't want to acknowledge what had happened since in hindsight the advice they gave caused much more harm than good. Even though doctors don't intend to cause harm, acknowledging what happened probably makes them feel a bit guilty and aware of their limitations. The nurses and rounding doctors don't like being reminded that medical treatment can occasionally be extremely detrimental rather than healing. That means the unfortunate patient gets perfunctory care and no empathy.

No patient should ever be treated this way. I've had way too much time to analyze why this same thing happened to me. At least the pulmonologist whose patient I became sympathized with the fact that SOC treatment for stage 2 breast cancer could be fatal in my case and has irreparably changed my life. His comment that a lung cancer radiologist would have seen the red flags in my medical history did not make me feel any better, though. Go ahead and be angry; I was for a while until I decided it took too much of my limited energy.

I hope there is something that can be done so you don't end out being one of the rare treatment casualties. I agree that there are people who have it worse but this doesn't mean that we should be shoved into a closet and hidden because we are living examples of what can go wrong. You have my empathy.

In order to be transparent, here is our post on the Glitch thread:

"In an effort to put an end to the continued derailment of the true supportive nature of the community and this thread in particular, any post that does not address a specific tech issue, question, suggestion or glitch will be immediately removed, and members who continue to disabuse this thread in a campaign of bullying against BCO will be subject to suspension or ban.While we're sorry for the tech issues we've all experienced in the last year, we can't allow this to continue for the health and growth of our community."

benny, I wondered the same thing. I got an "update notification" but when I clicked on it, it said "not found."

Mods, I'm sorry if some people were using this thread to abuse you. I thought it was just place to vent about our struggles with life with cancer. Again, I'm sorry if the venting was directed at you.

You are appreciated - even when we're frustrated.

Carol

Hello and have not been on for a bit since had issues after a bad fall and surgery. Been dealing with this for over a month now. Go to bed and my days go from the bed to my chair mostly. OT and PT are coming to the house. Have to wear a collar in the car if I go to an appointment. Had to put off other doc appointments since can only deal with one thing at a time.