Insurance…my new job

I have a new job – in addition to my first job. It’s managing my insurance and disability claims. Insurance is a nightmare to deal with just because of the paperwork. My plan is pretty simple. I pay everything out of pocket until I reach the deductible, then I pay everything at 20% until I reach my out of pocket max. No sweat, that took like 2 weeks. The problem is people keep wanting to charge me co-pays – I don’t have any. Or they charged me the full amount because at the time it was what I owed, but they didn’t file for another 2 weeks so other claims hit my account first and now I really didn’t owe that much anymore because yes, I hit my max. But do you think they want to reimburse me? Oh no. They will take their sweet time investigating. Then it’s oh, you had some outstanding bill from 2 years ago and we just moved the funds to that bill. What? I am sure I didn’t owe anything then, either, or you would have told me then and NO, if I am paying you for service in 2011 you cannot put it towards 2009. My insurance in 2009 should have paid that. I have asked MDA 4 different times to send me an itemized statement showing the payments I have made. If they want to include what I owe, fine. But that is all they send – what I owe. In about 5 different ways I have been shown what I owe, but NEVER have I been shown what I paid. I can give them dates of service with my amount paid and they cannot send me anything showing I paid that amount. “because they have to divide it up and move it around….” but never do I see what I paid. Well, too bad for them. I am not paying anything to anyone until I see that they have given me credit for what I HAVE paid. (and yes, I know I owe them a bit more). Then try dealing with the hospital that took my overpayment and paid off a claim from Ethan’s ER visit 2 years ago. Um, not even same patient. Did they charge me for the right fees? How is it my insurance didn’t cover that? Since my original diagnosis in 2009 I have met my out of pocket max. That means I have paid all deductibles, co-pays, etc until that large number is met. Usually it’s around 3k, but with the deductibles (that BTW don’t count towards max) it’s usually 5k. So how are my bills more than 10k every year? That’s realistic – how does 5k in fees not count? I have my own spreadsheets that now track every payment, every bill, every penny. It’s amazing what you have to do to not get swindled.

That’s just insurance. What about disability coverage? Well, for me, STD (short term) starts after 3 days. It can been intermittent, as long as I miss at least one day every 14 days (calendar days) and I have already fulfilled the 3 days at the beginning. So qualifying is fine. Staying qualified means I miss more often, but again, fine. But if I get paid at least 80% of my salary even with missing those day then I don’t get paid anything. Qualify for STD, but no benefit. And if I do work for more than 14 days in a row then I have to re-qualify for 3 days. So basically I get penalized for coming to work. I have chemo every 21 days – so I only take off that Friday and occasionally I take off that Monday. I will qualify, but get no benefit. Working too much. Now LTD (long-term). I must have 90 days of missed work to qualify. Of course this, too, can be intermittent. But if I work more than 45 days since the beginning of the LTD claim period then I have to start over. 45 days – not in a row, just 45 days. So basically I will NEVER qualify unless I totally stop working. I just love benefits.

Chemo #8

So, number 8 has come. I feel better than last time, but not good. The nausea, upset stomach and lethargy are just wearing on me. I KNOW I will feel better in a few days, so that’s my light at the end of the tunnel. I am at work today, but wish I was just sleeping -which is what I did most of the weekend. Tomorrow I have my appt with the pain oncologist and of course my shoulder is not hurting today. Isn’t that how it goes? We can still review everything, but it’s kinda funny how it works out that way – kinda like cars and their mysterious noises.

I’ll post more when I have something worthwhile to say. K

Coming up on chemo 8

This Friday I am scheduled to see an oncologist (not mine, but his partner since he’s out with his wife who just had their 4th daughter last week). I will have labs and then I am scheduled for chemo #8. I must say I am NOT looking forward to this. Not that I ever really look forward to chemo days, but last time was really hard. I tried the new nausea med and either it didn’t work or I just cratered anyway because I ended up missing the Monday after treatment, too. That was a first. The only upside to this being a chemo Friday is that Monday is a school holiday. Not for me, really, but at least if I am sick they won’t need a sub because the kids have it off and I won’t feel so bad about calling in. In addition to this, Ethan has been sick the past 3 days. He started feeling bad on Friday – cough, headache, malaise – but by Sunday he was running fever. I am hoping that today it breaks. He seemed a bit better this morning when I left him with my mom, but he had Tylenol around 3am so that was probably still working.  Of course, my snuggle buddy was sleeping in my bed – he just couldn’t help it. He would start in his bed but then start coughing or feeling bad and would crawl in with me. I am hoping that my ramped-up nurse immunity will keep me well. It has worked thus far keeping me from getting everything the kids have here at school!

I’m struggling with headaches, though. I think they are stress or possibly sinus, or both. I can’t take anything, really, so they just hurt. During week 2 I always get them – that is a SE from the chemo – and I am allowed one Aleve to get rid of them -and it works. Dr. K doesn’t want me taking them often since it interferes with the ability to identify fevers quickly, but they are coming more and more frequently. I took one this morning, but sadly I am getting no relief. I guess this is just one of those things.

On a happier note – Happy Valentine’s Day. My kids are blessed to have wonderful cousins and family members who have sent cards, little trinkets, notes – while I have done nothing. I got Ethan’s class candy (which they won’t get since he’s still home) but other than that I was a grinch. I did look at cards, but they were either too juvenile or too mushy so in the end I didn’t buy any. 

Sleep…where r u?

Every weekday I am exhausted. I curl up in bed before 10 and struggle to wake at 6:30. And while this may seem like I am getting tons of sleep, it’s not true. I wake, on average, six times a night – to pee. More if the dogs are barking or if I have a wiggly child sleeping next to me. So when I get to Friday all I can think about is sleeping in, taking naps, resting for 2 days. I don’t mean to sound depressing, but I really don’t want to do anything or go anywhere. Just let me sleep. So that was the plan yesterday. Kids left to see Steve, I was home, alone. Awesome. I ate dinner and curled up on the couch to drift off watching TV. Nope, nothing. I’m wide awake. After watching 3 hours of truly BORING TV I decide I should read. Nope, no books unread at home. I check my email, stare at the fish, wander the house. I finally go up to bed and decide I just need my bed. I leave the dogs inside so they wont bark or get caught in the rain. I turn on TV again to make me sleepy. Instead I am up until after 1am watching BORING TV. What happened to decent TV shows? Ugh. Oh well, I can sleep in. 2am, pee. 3am, Holly is scratching and making noise – cause she has sneaked upstairs because of the rain, 4:30, pee again. 5:15 – why am I awake? 6:30 – pee, 7:30 – pee. I wake a bit later because I am dreaming about characters from my latest book and they are in peril, then I pee. By 9 I’m irritated – I really wanted good, solid sleep. I end up getting up, taking a bubble bath, and then doing my taxes.  I realize this isn’t a bad scenario for most of you parents of overly-involved children, but it was frustrating all the same. It seems when I want energy to stay up and do things, i crash. When I want to crash, I cant. Murphy’s law or something. I will say this – today is one of my favorite kind of days. It’s rainy, I am alone, and I’m HOME. Not driving anywhere, not doing anything, and not worrying about having to do anything. My dogs are happily sleeping at my feet while I relax in comfy clothes, no makeup, no hair. That’s a good day. All I need is a good book. I have my e-reader so I will end up downloading something later today, but for now I am quite happy to listen to the rain. I might even get a nap.

 

Chemo #7

Yesterday was chemo round 7…out of 6. How does that compute? Well really, I have many more rounds to go but my oncologist planned for 6 because my current cocktail of Taxol/Carbo is only tolerated for about an average of 6 rounds. Tolerated -that means when one of these three factors kick in I stop this current treatment.

#1 – If my body stops tolerating the chemo – meaning my platelets, magnesium, and the rest of my blood panel is unable to recover between sessions and would require intervention like a platelet transfusion.

#2 – If my peripheral neuropathy (numbness in extremities -mainly my feet) goes from the current numbness to pain – then we stop. This is because the pain once it sets in is irreversible.

#3 – If my recovery time after chemo becomes too much for me – interferes with my life too much – then we stop. Remember, the goal is sustaining quality of life.

With all that in mind, this is what we have decided so far. Round 5 was hard on my body requiring 5 weeks to allow my platelets to recover and a mag infusion drip. So round six was a reduced Taxol treatment. That seemed to work – I was able to go on to round 7 with my platelets as high as I can remember – a whopping 195. My mag was low again but they can give me a drip during chemo, which they did, and that should resolve. My current neuropathy is stable. However, my recovery time was much longer last time. I was nauseated and lethargic for more than a week, which sucked. But its still not enough for me to say I am ready to stop our GOLD treatment. Of course I have the recovery from the #7 left. So far I am very nauseated. I did get an additional antinausea med called Emend during chemo. This is supposed to help with the delayed/sustained nausea. I hope it kicks in soon.

Schedule – I don’t really have one. Our goal is to get in as many of the gold treatments I can. I will see Dr K again in 3 weeks for my next set of labs to to see if I can do round 8. If and when I can no longer tolerate this cocktail he tells me I will get a little break from treatment. I don’t know if that means 1 month or up to 6..maybe more. We will have a CT scan after round 8 and then if whenever I have a break we will monitor me with additional scans every so often. When the tumors – that ARE decreasing – begin to increase again he will start a new chemo regime yet to be decided.

Other things – my pain oncologist was unable to see me last week – she left while I was in the waiting room to see her…some kind of emergency. And she is only at the Bay Area branch Wed mornings so she is always booked. So I think I might see her in another few weeks. But really, my initial consult was because my right shoulder pain was back and the CT showed stability so Dr K wanted her opinion. Since taking a week of Celebrex the shoulder is better. Not 100% but I’m not complaining there. And best of all I can take the Celebrex as needed instead of daily – which I like because it makes me burp. Seriously. And that at the same time as nausea is not a good combo.

I’ve decided all the patients I once saw in clinic or at the hospital with a mile long list of meds they were “allergic” to really are not crazy. They may not have true allergies but the side effects are not worth taking the meds when something else is an option. My list is steadily increasing. I started at zero and I am now way beyond 10. I think people with longterm medical conditions have to try more meds than the general public therefore they find all the things they cant tolerate. I would never have known bladder spasm anticholinergics cause chest pain for me if I never had to have radiation that screwed up my bladder in the first place. See what I mean? So I apologize to all those patients that in my mind I thought were a bit crazy or hypersensitive to any SE. I get it now.

I get lots of people telling me about various diets or supplements I MUST try because I will be cured or live longer, etc. (daily carrot juice, shark cartilage, gluten-free diets). There are truths to some, I would guess, and not to others. But in my current state I refuse to make myself miserable just to try something extreme and not proven to cure me. But I was suggested by my dear friend Amy to drink DanActive daily to help with my blood counts. Ok, that’s not too extreme. This apparently helped her Aunt with her counts. Ok, so I started. First off – they don’t taste good on my chemo palate. But they are small so I make them go down. Second – good grief – um you are in the bathroom all day long. I guess that is the point – regulating the bowels – but seriously every time you go? I’m sure some of you are saying TMI -  it’s my blog so get over it.  I was a regular once or twice a day girl. Changing to 8 times a day is a bit much. But i will say – my platelets were good this time. That may be a coincidence since they lowered the Taxol but it may not be. So yay, DanActive for another few weeks (said with extreme sarcasm).

Another totally unrelated to cancer goal I have is to read the books my daughter (13) reads so we can talk about them intelligently and I can make sure they are not too adult for her (insert Em groaning). Our 7th grade Language Arts classes at my school are all required to read The Hunger Games, by Suzanne Collins (so Em read this last year). You may have recently heard of this book since they made it into a movie that is to be released soon. I got the book – read it in 2 days (easy read) but I was impressed. It isn’t a feel good book, but it was well written and captured you. The second and third books in the series are both out. I have book two and I am on the list for book three. I do have time to read a lot since I have little energy to do much else many days. I only got these books because of my school library (Thank you Coy and Tina) they are too sweet and grab a copy when it is checked in for me. But if you are planning to take your tween/teen to the movie it’s a good read for you, too.

I’m about to crash again – but that’s the update as of today.

God Bless – Kathy

Getting thru the week

This treatment cycle was hard…harder to take, harder to recover from. I don’t know if everything is building up or what. I was so nauseated.. .and it lasted longer than ever before. Joint pains are not as rough, but I attribution that to lower dose of Taxol and because I am taking celebrex . In any case, nausea is still lingering even today but I am praying the end near.

Mom drove me to Austin for the baptism of Andrew, my nephew. It was a very nice service I just wish I could have felt better. As it was, I just said my part and then crashed.

Last night I was able to go sleep at 8, and that seems to have given me some much needed strength today. On Friday we will celebrate ethans birthday…double digits! He’s just having a few buddies over and we will go to the movies.

I have started tibal nerve stimulation for my radiation induced bladder spasms. I get my second treatment today. I hope to get some kind of positive feedback.

I see my oncologist on the 24th so I will know more about my treatment plans then. Thanks for listening and praying.

Chemo #6

Today I am getting chemo #6. The marks the end of our original cycle of chemo. So far I am tolerating them better than expected. One new thing, the referred pain to my right shoulder came back again this week. Dr k sent me for. CT Scan on tues to check it out. Apparently it shows improvement in the lung. That’s very good news, I’m just frustrated because then why the pain? So I’m seeing a pain specialist in next few weeks and starting celebrex to see if that helps.

Last weeks labs also indicated I was low on magnesium, so I had a mag infusion last week which brought me up a bit. My platelets are still low, but good enough for chemo. Vit D low, still, so I’m back on that. He reduced my taxol dose a bit so I won’t bottom out and he’s planning more chemo, same mess, until I really can’t handle it. Like if my platelets bottom out or neuropathy is too painful. No PET this month since the CT showed him positive changes.

I’m hoping this is good treatment because I’m off to Austin tomorrow at some point. I will sleep and try
to get some strength. Mom will drive. I’m going for the baptism of my nephew, Andrew. I’m his sponsor/godparent. I’m excited to see everyone so I hope I will feel decent.

Thanks for your posts and prayers…

K