Saturday, May 19, 2018

Waiting is not my strong suit

Warning: Long post. You might want to make a cup of tea or pour a glass of wine. You might be a while, if you make it all the way through this post. And be prepared for a lot of VENTING.

So much has happened in the past month and I've had neither time nor energy to write. In fact, I've felt pretty miserable most of the month. My hope that the side effects would be confined to dry mouth, nausea and the occasional headache was just that: a hope. Reality set in four days after chemo when a bunch of stuff hit at once. I won't go into details but let's just say there wasn't a part of me that didn't hurt. I lost 13 lbs in two weeks. The trip to Nevada was, without a doubt, the WORST trip ever; I couldn't even keep water down. It took me a week to recuperate and be ready to move into our apartment.

God granted energy and a mostly pain-free two days that allowed me to help at least a little with the move last Friday and Saturday. But honestly, the bulk of what was accomplished was due to our daughter who was a woman on a mission! On Friday she helped Ivan unload the pod and then, while I slowly unpacked kitchen boxes and put things away, she whipped through, organizing the bathroom, bedroom, big walk in closet (that's serving double duty as both closet and storage space) and started on the living room by unpacking and putting books on shelves. Later that evening Ivan and Kyle picked up the couch we'd found at a furniture consignment store. Saturday Tina took me shopping (this was our third outing specifically looking for furniture) and we found some nice big, tall end tables at a ReStore. Do you know how hard it is to find nice big, tall end tables?! What's the deal with all these tiny, short tables being passed off as end tables today? The arms on our couch are 27" high, and it would look downright silly to put little 20" tall tables next to it.

Sunday I started feeling yukky again and that lasted through Tuesday morning. Ugh! As if feeling physically ill wasn't enough, the emotional fallout of this week has been intense. Our insurance, AMBetter, has been an absolute nightmare. I was supposed to get a CT scan, but the morning of the appointment, it was canceled because they hadn't received approval yet. And Wednesday I learned they still hadn't approved my next chemo so that, too, was canceled for Thursday. Ivan has spent SO MUCH TIME on the phone, it's ridiculous. Every.single.time. they start out by telling us we're not in the system. Ivan persists and "Oh, yes, here you are!" happens. But that's about it. I know the people we're dealing with are just the worker ants and they're all taught to sound sympathetic and helpful, but the truth is they are just giving you a run-around and nothing actually gets done.

Ivan's been calling daily since May 4th, trying to get us assigned the primary care physician we want (who is in network). That still hasn't happened! How hard can it be to put our names on a specific list?! He's been calling multiple times a day since Wednesday and it's been so frustrating! We did learn Thursday that a big part of the problem is that the folks at AMBetter were looking at our old policy in Indiana and saying I was no longer a client. Duh, no I'm no longer a client in Indiana, but I sure am in Nevada! (None of the call centers are in Nevada; he's talked to people in several different states but none of them our own.)

Today Ivan spent at least two hours on the phone. He was on hold for 20 minutes the first time and then they hung up on him. That's happened several times this week. He's learned to immediately ask for a supervisor because those who answer the phone have no authority to do anything anyway, so it's completely useless talking to them. With some coaching from our daughter we are learning how to deal, and today Ivan asked for the supervisor's full name and for her extension in case the call got dropped. The upshot of that call is that we learned the two tests the doctor ordered were being held up because the person reviewing them had flagged them as requiring "peer to peer" review. But no real news on why the chemo is being held up.

Ivan called our contact at the doctor's office and told her about the peer to peer review requirement, and a few hours later she called back to say that had been handled and I'd been approved for both tests! So some progress. I'm thankful my oncologist is being proactive and jumped right on that, once he knew. Would have been nice if AMBetter had communicated that with him directly. We only found out because of Ivan's persistence in calling and calling. We're all hoping that Monday we'll get approval for the chemo. Our contact at the doctor's office said that now I'm in the system, things should start moving along.

If not, we're prepared to keep calling AMBetter AND file a complaint with the Nevada Commissioner of Insurance. We've already filed one with the Better Business Bureau. Is the tactic by insurances companies to make it so difficult that people just give up? That's not gonna happen here! My husband is like a bulldog and he's not going to let it go until there's resolution and I can resume my treatments. It's ridiculous that it should be this difficult to get approval for a treatment that literally has life or death consequences. Tuesday I'm rescheduled for chemo IF I get approved; that day marks four weeks since my first treatment...they're supposed to be given in 21 day cycles.

Aside from all the insurance drama and my low energy levels/continuing bouts of intestinal problems, we're loving Las Vegas! It's dry! It's warm! Tina totally scored when she found this apartment for us. It's in a gated complex so it's secure. People are friendly. The grandkids love the pool! (I haven't been in it yet; just watched from the sidelines.) Ivan likes working by the pool; he takes his backpack with files and computer, and sits and makes calls. There's hardly anyone at the pool during the day, so it's a great "office" space for him.

The apartment is small (one bedroom, one bath) but there's tons of storage so I can keep most of my junk hidden, which I love (clutter is my enemy). The main living area is open concept, with the living, dining and kitchen all opening into one another, but the spaces are delineated which I also love. It's just the right size for us, right now. I don't need -- nor want -- a big space to clean. It's not ideal for entertaining, but then I don't anticipate feeling like entertaining much this coming year. Treatment is supposed to last 15 months, without any pauses. And of course, we are currently in the midst of a big pause while awaiting insurance approval for treatment.

It's absolutely wonderful to be close to Tina and her family! In Indiana we were an hour away and with our busy schedules, we typically only saw them once or twice a month. This is so much nicer! And I found out we don't have to wait until September to meet Eisley in person! I knew Jon was coming to visit next month, but I had understood it would just be him and Adalyn. But everyone is coming! Doing the happy dance!!!

So we moved last weekend, and this weekend Kyle and Tina move! They closed on their house this week, and their pods get delivered tomorrow. We'll keep the kiddos here and plan to wear them out with lots of pool time! We want to hand them back to their parents absolutely exhausted and ready to sleep like little logs. Because I'm pretty sure Kyle and Tina will be ready to sleep like logs themselves! Moving is not for the faint of heart.

And on a completely unrelated note: I got tired of shedding like a dog and had Ivan shave my head. It was a bit traumatic which caught me by surprise, but once it was done, I was fine. I already had a bunch of scarves but also bought two cotton beanies. The beanies are easier and cooler, but I'd really like to find a pattern to make the twisted turbans. All the ones I've found for sale are polyester and I want 100% breathable cotton. I'm looking at these turbans online and thinking "how hard can it be to make one?" Right?! Has anyone ever made something like this? Any hints or tips? I don't want anything too ornate {i.e., no big bows on the top of my head or large fabric flowers on the side of my head}, just a simple turban with a twist at the top. I started searching patterns but haven't found what I'm looking for yet. As warm as it is already, there's no way I'm putting a hot, sweaty wig on this summer. I'm all for soft, cotton turbans and beanies, occasionally dressed up with a scarf. 


Mari said...

I'm so sorry you have had to deal with all this, but what a blessing Tina is!
Praying for you, your health and these side effects, and also that the insurance situation gets straightened out.

The Bug said...

Mike and I had been trying to sign up with the health exchange for several weeks before I finally just called them. The lady was so helpful & figured out the SNAFU right away. It's too bad all insurance people aren't like that! Of course, she's not with the insurance company, so maybe that's why.

I'm glad you're moved & so much closer to Tina & Co. And I'm really glad you get to meet the baby sooner! I'll be praying that your treatments get approved so you can start the process of kicking cancer's a$$!