Monday, January 23, 2012

Antsy

I'm antsy.

I don't know why. I want to get a job. Not just for money, though that's part of it, but to keep busy. Don't I have enough to keep me busy at home? Yes, but i don't do it. i don't think I could work at home; I get too distracted.

I saw the radiology oncologist today. Wednesday is my doctor day but I asked the nurse some questions and they fit me in early. See, now that I am rubbing cream on my chest every day I noticed it feels lumpy and just weird. There is a hard lump right about where the tumor was. Not big, just weird. And I guess I am even more paranoid than I thought, so I was freaking out about it a little.

The doctor showed me my X-rays they take every week and showed me the map of my chest wall. The lump I feel is muscle and probably some scar tissue. They can see it's not a tumor. Oh and there is also swelling which is normal at this point in radiation. So nothing to worry about.

On another note it was my 19th treatment today! Over halfway there. this week and then two more weeks and radiation will be over.

He did say HE would recommend waiting even longer for reconstruction. Like 6 months. Blah!

I really need to get out and stay busy so I don't freak out about stuff like this. So I want to get a job. It should be easy enough to get a little part time minimum wage job, but then I think who would want to hire a fat, swollen, bald, lopsided lady who hasn't worked in 20 years and can't stay on her feet for too long? And has to work around radiation and future surgery? Yeah. I'm a real catch for any employer. :-/

Sunday, January 22, 2012

Hot flashes

They're back. :(

I'm not sure I posted about this before, but I had looked up old wives' tales for dealing with hot flashes. I read that apple cider vinegar helps. Well, I have a little history with ACV - my now 18-year-old son had really horrendous warts. I wish I had taken "before" pictures, they were SO bad! We took him to the dermatologist who sentenced, I mean recommended he get freeze treatments. Won't take more than 12 weeks or so, he said. The poor kid was subjected to this and it didn't seem to be helping AT ALL. He had at least 20 warts on his hands, one that was a whole cluster of them growing up under his thumbnail, and the Dr. kept saying we couldn't see improvement yet because it was SO deep in there that it had to draw it up to the surface. Not to worry, he said, it IS getting better!

Only it didn't, and even the little ones went away at first and then CAME BACK. Poor guy was so miserable and he could not play his band instrument or even do his homework, so after a month past the time they assured us would be "IT", we quit.

I looked up old wives' tales on that, too, and found advice saying to use ACV. So I bought some of the organic, raw stuff and he just used a cotton ball to wipe it on before bedtime, no washing it off. Honestly he forgot most nights, maybe he did it twice or three times a week.

After a month or so I asked him how he was doing and he said they were GONE. Sure enough, they were! And they have not been back, not even a tony bit, in over a year.

I'm sure the doctor would say he got just enough freeze treatments to keep working, but if so, I would say he is full of crap. I believe the ACV worked, and I would certainly try it FIRST next time.

All that to say, I decided to try it for the hot flashes. I used the organic raw stuff I had, although in retrospect it may not have been the best idea while on chemo. I used the Bragg's brand and mixed up their "energy drink" on the label - 1 T vinegar to 1 T honey (I was not allowed honey, so I used the equivalent in stevia; I also tried 100% maple syrup) and a cup of water. Actually I doubled it and used 2 T each and 2 cups of water, twice a day. I really like the taste - it grew on me, and was refreshing as a glass of lemonade. I looked forward to it.

Somehow I stopped using it though, don't know why, I think I ran out of the vinegar. BUT I can tell you I didn't have hot flashes during the time I was taking it regularly.

I can't say for 100% certain that it works against hot flashes, but I can for 100% certain say that I didn't have hot flashes while I was taking it!

Tomorrow I will go buy some more vinegar, because I had forgotten how horrible these are.

Well, there's One Decision.

I got my packet from the breast clinic, which did not have any financial applications, like they said. But anyway, the main thing that stands out to me is they won't do surgery for 3-4 months post-radiation so my skin has a chance to heal.

So, that puts me to July. Which is OK really. If they couldn't do it right away, I wanted to wait till July. That gives me the chance to do my Scout camps and such, and enjoy at least part of the summer with the kids. I don't want to wait until fall because fall is such a busy time. it would be nice to be recovered in time to take Andrew to college for the first time (sniff). So my window of opportunity is perfect for early July - early September.

But now I am forced to admit that I am scared to death to keep my other breast for that long. I am terrified that cancer will develop there. I am still obsessively checking it multiple times a day, and I still feel phantom pains (that the doctor says are from my obsessive checking). Vicious circling at its finest.

So now we're back to the dilemma of getting that done right away or waiting. I guess maybe I can ask the doctor to step in for some questions on Tuesday, and I can also call the clinic and get some advice (and the financial papers). Meh. Why can't just one thing be easy.

Saturday, January 21, 2012

Thoughts

* it feels weird to feel hair on my head. I keep wanting to touch it.

* I know I said i was done with Humana, but something occurred tome. Even if they hadn't gotten the paperwork, I get 63 days between my old and new policies, where I don't have to have insurance. I get 63 days to find insurance, I guess? At any rate, even if I had not been on COBRA I would have only been without for 61 days! So they didn't even need the paperwork - they are just either idiots or assholes (or both)! I feel vindicated. :)

* The breast clinic is not in my network. Of course! In fact, they are in no networks. I can't say I blame them. This way they can avoid the BS and drama - at least somewhat. They are sending me a financial aid form. They said they could possibly get my share down to $2000 between that and what my insurance does pay. That would be 50% - but it's 50% of what THEY consider reasonable, which is not going to be the actual amount, I can tell you right now. The total cost of a mastectomy, reconstruction (including the tummy tuck) and "nipple tattoos" (?????? What the!? I hadn't even thought of this.) is $15K. So assume the insurance considers "reasonable" to be about $10K. They will pay $5K and I will owe $10K.

They do break it down into 3 separate procedures which I *think* are as follows: 1. mastectomy
2. reconstruction
3. tattoos

I assumed mastectomy and reconstruction could be done at the same time, because they were going to do that if I had chosen reconstruction at the time of my first surgery. I need to clarify this. But if it's separate it's because with the tummy tuck it is so major.

What I am thinking is this: do the mastectomy with a network surgeon. Meanwhile I can be researching network guys to do the rest, but honestly, I had already pretty much decided against reconstruction before I decided on the other mastectomy. I felt I could not justify a cosmetic procedure. Even when I wanted to, it was the "free" tummy tuck that I really wanted, LOL! Now, I definitely want the mastectomy, but if I can't do them together I will take my time to decide on the rest. Maybe something will change with the insurance in the meantime. If I don't get it right away I will get the prosthetics. I have plenty of time 9the rest of my life) to think about having the rest. I can always decide to do it, but I can never go back on my decision if I do it and something goes wrong. I can justify neither the cost nor the risk at this point in my life.

And for the record, the "nipple tattoos" are only $300, if anyone is interested. personally, I think I would pass on those!

While I am going to still look into it, I am completely at peace with this option.

Friday, January 20, 2012

Insurance Crap

It really is true that some insurance companies will do whatever it takes to avoid paying legitimate bills for as long as possible. I truly hope this entry shows up in search engines when anyone is looking for reviews on Humana. I have no idea how to put keywords to make that happen, so if anyone knows fill me in and I will edit as needed. if I ever have a CHOICE on health insurance companies it will NEVER. EVER. EVER be Humana, no matter what they may do to try to make up for the incompetence they have shown me in just 3 short weeks!

Here is a list of issues, in no particular order.

* Denying coverage because the primary insurance has not paid yet. THEY ARE THE PRIMARY AND ONLY INSURANCE WE HAVE. This has continually happened even after I have called them and "straightened it out" twice already.

* Misspelling three of our names. TWICE.

* Putting a birthday wrong. THREE TIMES.

* Finally, they told someone yesterday they are declining all coverage on me due to pre-existing condition. Well, they can't do that. We followed all the rules and jumped through all the hoops to do everything right. If you have continuing coverage, they can not claim pre-existing. Yet they are.

The clinic told me not to worry, that they are just stalling. Yet *I* am the one who has to call AGAIN and talk to an idiot who is certainly just parroting the company line, raising MY stress level and potentially hindering MY treatment at what is alreay the most stressful time of my life!

Yay for Humana, who also conveniently has limited mental health care for when they drive me batsh*t INSANE after all their BS!

So if you have a choice - DO NOT GET HUMANA!!!!! Tell your boss! Do what you have to do!

I have no idea if all companies do this but a friend in health care says they are one of the worst for wanting to put off paying. Beware!!

EDIT: I spoke to Kate at Humana. Yes, I was polite - it's not Kate's fault. She says they never got the paperwork on my old insurance, which is a lie, and we both know it. But she says it's fixed now. Whether that is also a lie remains to be seen. In the meantime I will still show in the system as pre-existing for TWO ENTIRE WEEKS. Yup! So I have a reference number and I get to go around to all my various providers and give them that and ask them to call so they can verify my coverage. And oh, please continue giving me thousands-of-dollars-a-pop treatments in the meantime while you wait two MORE weeks for your money, K? No problem, I'm sure! Case closed.

And with that, I am tired of whining about Humana. I will leave it at HUMANA SUCKS EGGS and promise to update if that ever changes. Off to radiation and then to the pool!

Wednesday, January 18, 2012

Stuff

I was given the OK to "work out" a couple of weeks ago, taking it really easy since I am SO out of shape. I don't know if that's typical of chemo patients or not because I was really out of shape in the first place, but of course now it's much worse. As soon as he said I was allowed to exercise, AND go in the pool (not allowed during chemo because of infection potential) I jumped on it. We belong to a health club with an indoor pool. I like to do the water aerobics but I am in no way ready for that yet. I started out with a goal of just getting in the water, which I really enjoy and find very peaceful (a bonus!) and moving around somewhat for at least 15 minutes. On the first day it seemed like the 15 minutes crawled by so I stayed in for 15 more. I felt great afterwards! 30 min was my max because I don't want to overdo it, and in fact I did feel it the next day.

My plan now is to go in 3 or 4 days a week, skipping Tuesday because it's Herceptin day and I don't feel great after that. I go to the club right after radiation. I'm in my 3rd week now and have upped my max to 45 minutes. I really feel good and I think I'll try the class once radiation's over - the good thing about the class is you don't have to "keep up" per se. If I can't handle it I can just stand there with the rest and move.

Now the bad part is I lost one pound in the first week. I was really proud of myself but I got chewed out when they weighed me at radiation. Losing weight can mess up the whole mapping thing and cause issues with the treatment. I am only allowed to lose 10 pounds and they would really rather I stay stable. There is no way I am going to give up the swimming now that I finally got motivated to start, so that means I will put off the low carb diet till after. I am changing my eating habits pretty well and it's awfully ironic after all these years trying to lose that I'm trying to eat enough to keep the weight on!!

In other news I got a referral to a breast clinic in NO. It's supposed to be one of the best in the country, women come from all over to get their surgery done. They specialize in the DIEP flap reconstruction. They finally called me today and at first I was crushed to hear that they are not in network on my insurance. I told them there is really nothing more to talk about then and she said wait, we will run your benefits and see if we can work something out. I said if I have to pay anything more than the in network then I can't do it. She said they work it out often so let's just see.

Out of network pays 50% where in pays 80%, I believe, so I am really trying not to get my hopes up. I will have met my OOP max by then so they would pay 100% in network. I am not sure about out of network if OOP is met. It does make me wonder that she was so quick to say they would try to work it out. Is the economy that bad that they will take what they can get? Probably not, since they are the best and people will pay for the best. So I am trying not to get my hopes up. I was told about a very good doctor in the neighboring town that could do it. But then I also read that the one in NO is who everyone goes to whose surgery went wrong! Yikes.

I am still kind of torn on this whole thing. If I wasn't getting the other mastectomy I don't think I would get just reconstruction. I just can't justify elective surgery at this point. But I can't live with the other breast any longer than I actually have to, it's going to end up freaking me out.

I hope they can do it soon, because if they can't, I will probably wait till the end of summer. I have things I need to get done, and if there is no real rush I want to go on with my life.

I know I will have to start over on the getting into shape after surgery (and don't forget hysterectomy at some point!), but doing as much as I can now will hopefully make me heal faster once I do have it, plus get me into the habit, plus make me healthier for the future! I am really proud of myself. :)

Tuesday, January 17, 2012

Yep, it's HAIR!



Photo taken by my daughter. This is about 9 weeks post-chemo. With the help of gel, we were able to make a mohawk! Maybe for my next field trip I should spray it purple. :)

Monday, January 16, 2012

Now I understand.

My Dad used to complain that he didn't want to be a drain on the family finances. Of course I chastised him for saying that, and rightly so, I still believe. But now I can understand what he meant a little bit more.

There is a difference between him and me, though. He had money, and plenty of it. He was just trying to save as much as possible for leaving to us, while we wanted him to have whatever he needed - and we needed to help with him - specific to that discussion, a night nurse so that we ourselves could function. I won that conversation, and we all benefited from it.

But we don't have any extra money. We spend more than we bring in on our best day pre-cancer. I personally have been in a mixture of denial and "I don't care, life is short" for far too long. There are also the medical bills, stuff not paid by insurance, vitamins and phone consults and bandannas and dangly earrings and just the LIFE HAPPENS of six kids (one in college, one in senior year high school which is hideously expensive if you don't already know), 4 falling-apart cars and their repairs, maintenance, insurance and gas, grocery trips that cost more if you don't buy canned CRAP (I thought about extreme couponing, but pay attention to what they buy and what coupons are for! Processed, sugary, chemically CRAP), 4 kids in league baseketball...do I even need to go on? Frankly, we've needed a wake-up call in our spending for a long time coming.

Today I about had it when I went in for a lymphedema consult and our new insurance company (I have not talked about that yet, but I will if I can ever organize my thoughts to do so). They asked me for my co-pay, which happens to be extremely high at $55 per specialist visit. I was surprised - when I had PT last year under my old insurance it was billed as a service. The distinction is that the service is billed under the deductible co-insurance. So once I had met my out-of-pocket maximum (which I believe I have already met for this year, after just 2 weeks) they paid 100%.

Lymphedema therapy wants me to come in 3 days a week for 15 visits. At $55 a pop, that will not be happening, ever. So she gave me the sleeve and gauntlet (Someday I will throw that down, just because I can!) which will be paid for by a foundation that does that, and a couple of sheets of exercises which she spent more time than she really had, teaching me. So I can do them at home and not go even broker, at least from that.

Luckily, I am not having any problems with lymphedema yet; Dr. Mc just wanted me to consult and head stuff like that off.

Anyway as I was crying on the phone to the insurance co, thinking surely there must be some sort of mistake, I remembered my Dad grasping my wrist and saying "I don't want to be a drain". I know now how you felt, Dad Even if it isn't rational, it's just how I feel right now.

Wednesday, January 4, 2012

That stupid meme is back!

The "Stupid Cancer" crap I posted about earlier .

The thing is i KNOW people post it because they care. So I just can't come back with a snarky answer.

I wish I had the nerve to post it on my own wall with a note saying how I really feel about it (and that I don't speak for all cancer people but neither should they).

I really, really, really, really, REALLY (infinity) HATE IT!!!!!!!!!!!!!!!!!!!

PS I changed the title on this because all of a sudden I realized it might freak people out! Sorry!