Daily report

Bones still hurt. Not quite as bad as last week but enough to keep me down and miserable. Let's see, this is day 7.

Making Decisions

I am the world's worst decision-maker for any occasion, from ordering dinner to painting a room to about anything you can imagine. So I know I am really wishy-washy on the whole medication thing. I wish I knew for sure what to do. Sometimes it's cut and dried: have a headache=take an advil. Nausea meds give me headaches that require a pain pill, therefore I would rather put up with nausea.

Here are my choices, as I see them:

CHOICE #1. Continue taking the medications, as directed, for the length of time directed.
Pros:
Statistically my chances of recurrence go down.
I have only 12 weeks of Herceptin left.

Cons:
Depending on who you listen to, the statistics are not that great
They cause side effects of nausea, sore bones, headaches, which are getting worse as time goes by.
I lose a day each week for treatment on Tuesday
They could cause other kinds of cancer
Herceptin causes heart damage which may or may not be permanent

I'm not sure which of the meds is causing what. The nurse says she has heard complaints about both from people who are taking only one. So it could be both that are causing the bone pain, which is the worst of my complaints so far.

CHOICE #2 Discontinue one or both medications now.
Pros:
side effects should go away.
Risk of other cancers from the medication should go down (although I guess it could possibly be too late)
I feel better in general, do not lose a day each week and can concentrate on moving on with my life

Cons:
My risk for recurrence does not go down.
I would worry about whether I made the right decision.

Do you see my dilemma? I'm damned if I do, damned if I don't.

Here is what I've decided for the moment. Stay off Tamoxifen for the 2 weeks. I made the appointment for Herceptin for next week. Unless I have another totally crappy week, I;ll keep it. Then I will go back on Tamoxifen and possibly take a 2-3 week break from Herceptin and see how that goes.

Although at the moment I am strongly wanting to stop the Herceptin. I know if you've read any of my posts you're shaking your head and saying that you've heard it before. I know I am wishy-washy, and thank you very much for not rubbing it in. YOu can not possibly understand the scope of these decisions unless you have to face them for yourself. Yes, I am very glad that I have a type of cancer that has these treatments available. If I still had cancer it would be a non-issue and a no-brainer. It's the fact they are strictly preventive in my case that makes this so hard. The damage I am doing to my body in taking them can not be ignored. But neither can their success rates in preventing recurrence.

I really, really hate this.

Trying to Find a Pattern

I have been really busy lately. I directed a Day camp, then attended a 3 day camp with my boys. I felt pretty good during that time. I wasn't getting much sleep, because of being busy and stressing over details (but it was not a bad kind of stress). I'm sure I overdid it, but I loved it. At the second camp it was really hot and there was more walking than I could handle, so I drove myself around the camp to lessen my walking. I know I could not have handled an extra day.

When I got home, I got a stomach bug that had been going around at the Day Camp. I was down for a couple of days from that.

At some point during the second camp, I re-injured my already bad knee. Nothing major, just stepped in a hole or something. Ever since, it has been hurting, and I;ve been wearing a brace.

I got my Herceptin treatment on Wednesday after I got home. I had skipped the week before sue to the Day Camp.

Sometime during all this my bones started to hurt really bad. It has happened before and I'm sure I've written about it. It happens once in awhile and I have never tried to find any pattern to it before. Every bone in my body aches and I have trouble walking and getting up from sitting/lying down. I feel like an ancient old lady. Usually it doesn't last too long so it hasn't been too intolerable. I had looked around enough to find that it could be either the Herceptin or the Tamoxifen.

So now it's been going on long enough that I have been totally miserable for the past several days. I had my checkup last week and the Dr. said I could try going off Tamoxifen for 2 weeks and see if that helps. It isn't supposed to be a side effect of Tamoxifen, but someone forgot to tell all the women you read complaints from when you Google "Tamoxifen and bone pain". It IS listed as a possible side effect of Herceptin, though he said it would have happened sooner (again, lots of other women didn't get that memo).

I am going to try to record how I'm feeling every day so I can try to figure out what it's from. I am off Tamoxifen for 2 weeks and I will get my Herceptin tomorrow. I have 13 Herceptin treatments left and I had pretty much decided to see it through, however I can not live like this. I *THINK* it has happened right after treatment, and not lasted too long, and figured I could put up with that. Maybe it's been worse this week because I overdid it, or because I was sick, and I can deal with that. I just want to know.

Too Much Trouble

So, I decided to look into reconstruction again. First I called the Breast Center. They won't give me an appointment till I get all my paperwork in. I filled out a health history and sent it in. Then they wanted all the medical reports. Seems strange to me that they don't request them themselves, but OK. I had to call to get a few I was missing.

Then the financial lady called. She ran my insurance. I have a 2500 deductible for out of network, and then it pays 50%, The total cost of the three phases of this surgery is over 100K. Now I am no math whiz, so she told me that my share of the first phase would be 30K.

She did say they have financial aid, and payment plans, and don't worry we'll get you set up.

Meanwhile, when I called my surgeon's office to request a report, the person I talked to told me about another plastic surgeon who IS in network, and does this procedure, and works with my surgeon (who would do the mastectomy). So we're looking at $55 copay vs 30-30K, less whatever "financial aid" is available and plus finance charges, what to do, what to do.

I called the network guy to set up a consult. After 30 minutes shuffled around on hold, I decided to let my doctors office do it for me today. She also got shuffled around on hold, was able to give them my insurance info but finally was told that the ONE person who makes the appointments for 10 doctors in 4 different towns was, and I quote, "BUSY".

(Ya THINK????!?!??!?!)

So now I get to wait for a phone call, it's been 3 hours already and of course I can't leave my phone in case I miss it. Hooray!

Also the local office only sees people on Friday. I happen to be busy for the next few Fridays. I can do it THIS Friday, but next I will be doing GS day camp, the next I will be at college orientation for #2, the one after that would be OK, then the next is Cub Scout Day camp which I am directing and it's my big week.

Then it will be July. I wanted to actually HAVE the surgery in July, so that I would be recovered in time to take my kid to college in September and work in the concession stand and all the stuff I want to do. It's not going to be convenient, any later than July.

I'm not saying I want to forget it, but I wonder. I wonder if it's really worth all this trouble when what I really want to do is just LIVE. Do I really need it? I don't want to wait till next year because then it will cost an extra $2500, but do I really want to worry about that amount of money when the alternative was 30-50K?

Seriously, I just want to get on with my life!! I am so tired of all the BS and hoops. I just want to live my life. WHy is that so complicated.

Raising Awareness

We're all painfully aware of breast cancer - me, because I have it; my friends, because I have it; the world, because pink has taken it over. Even before I was diagnosed the pinkness bothered me. Where is the awareness for other things? I will do my part to try to spread some.


MELANOMA


It has really started to bother me when I hear people talking about tanning. I admit to being a sun worshiper when I was younger. I had dark olive skin back then, which is hard to believe now. My skin has changed and I am more fair. Back then, I would take a long time to get a burn. It would be red and painful for the evening and turn to tan by the next day. It was pretty painless for me so I really never wore sunscreen. In fact, the "thing" to use back then was a product by Hawaiian Tropic - the dark bottle of oil that had NO sun protection at all! Man, did that stuff smell awesome. It's what the cool beach bunnies wore! If I didn't have enough money for the oil, I would use plain baby oil. Hard to believe now! Can you even still buy that no-SPF oil?? OMG, you can! I would think there would at least be a warning on the page, but there isn't!

When my kids were little they were just coming out with things like SPF swim shirts. I would watch the kids in those and scoff in my head. Now I'm not so sure. I would always put on a plain T-shirt if I was getting too much sun, and it seemed to help. Sun shirts are really out of my financial reach, especially since it sounds like they have to be replaced often. Here is an article on the topic.

And now, here is a video made by real people (not actors) to increase awareness of melanoma. It's what they wish they had known at 16...realistically, I can't imagine listening to something like this at age 16. Heeding it, I mean. Aren't we all above this stuff? But that's why it's so important to spread the message. Now that it's spring, I can't tell you how many people my age - 48 - are posting about going tanning, whether at the beach or the tanning bed. Tanning beds are NOT safer than the sun. If anyone says anything, they do what I would have done - scoff. Cancer? That's what happens to OTHER people. Please watch this video, and consider sharing it on your own Facebook page. It is a powerful video and a powerful message, made by the very people who thought it would only happen to somebody else.



Now the obvious answer seems to be - SUNSCREEN. But not so fast - there are issues with that, too. Read this article and see. There is a place on that link where you can type in your own sunscreen and see how it rates.

I have a friend who buys special sunscreen for $65 a gallon, but it isn't perfect, either. it needs to be re-applied often and stays white on the skin. Not too likely a teenager will be willing to do either of those.

I think the better answer - as with anything - is balance. Find a sunscreen on that list that is lower risk, and USE IT whenever you are in the sun.

One thing I noted for myself is the danger of sprays (when inhaled). We usually buy spray because it at least seems easier (even though it really isn't). I will now stop buying sprays. Lotion is easier, and it also won't bother anyone sitting nearby.

We can not avoid all dangers. Life itself is the only risk factor that is common in all death and disease! But we can continue to do the things we love, and be smarter doing them.

Giving Blood

Over the years I have given blood. Not really all that often. There was often some medical thing keeping my blood from being desirable, like anemia and thyroid medication. But I gave it when I could. I just found out that I will not be able to donate blood ever again. I may or may not be able to donate my organs - something I feel very strongly about doing - it will depend on which organ and how long it's been since chemo and some other things. But that's OK. Because now, according to the article, there is a great way for all you guys who say "I wish I lived closer so I could help" to help. Go donate your own blood! It said you could do it in my name, I don't know if that was literal or figurative and what the point would be. Just donate blood, and think of me when you do. Edit: on further searching it looks like maybe I will be able to. http://www.kantrowitz.com/cancerpoints/donatingblood.html But it will still be at least 5 years till I can, so still, go donate! :)

All in a Name?

Today a friend posted that she is signed up for a 5K run. It's called the Dirty Girl Mud Run. You can Google it if you want, I don't want to put a link. It looks like fun if you're into that kind of thing. It does not describe itself as a "breast cancer run " on its web page, although it DOES donate to the National Breast Cancer Foundation (hooray - it isn't giving to Komen!) Here is what it says on the front page: Having the dirtiest time of your life isn't all you'll be doing out there. A portion of all registration fees is donated to the National Breast Cancer Foundation Click to learn more and you find: We're proud of Dirty Girl as an exhilarating event that empowers women through camaraderie, fun and shared challenges. In the spirit of shared challenge, we're proud to donate at least 2.5% of all registration fees to the National Breast Cancer Foundation. We're excited to assist in their life-saving mission to help women in need with education, early detection and treatment. Thanks to Dirty Girl runners everywhere, in 2011 we far exceeded our minimum goal––with $50,000 going to the cause. Our goal for 2012 is to raise at least $250,000. Let the games, and giving, begin! Now don't get me wrong, $50K and $250K isn't exactly chump change. It isn't a ton, either, but that isn't the point. Look at the actual amount per person - they are perfectly honest - "at least" 2.5% is given. Folks, I submit that this IS chump change. The fee to join this walk is $75 which is very expensive for a 5K IMO. I'm sure they have lots of expenses for the course since there are obstacles. But really, $75? Well, they can charge whatever they want. But still, 2.5% of $75 is only $1.88 per person. I have no problem with this since it's perfectly obvious on their web site. They aren't trying to be something they aren't, from what I can see. Most of the people in the pictures aren't even wearing pink. What's bugging me right now is the way my friend posted it. "officially signed up for the Dirty Girl Mud Run for breast cancer" she says. The problem is that it is NOT a "run for breast cancer". It's a run that happens to donate an extremely small portion of its proceeds for breast cancer. It's like how at Girl Scout Day camp we always collect quarters and donate them to a different place each year. We don't identify the camp by what our little side charity is. (And then there's the little niggling feeling I have, since I am reading "Pink Ribbon Blues" right now, that they do this little donation in order to get more runners who think they are doing this awesome thing for breast cancer. Apparently they even let 250 "survivors" run for free - although from looking at their FB page it isn't something they advertise and if a survivor pays before they find this out, too-bad-so-sad guess you know for next year.) I don't know why this bothers me so much. I am itching to say something on her post, but I don't want to be the buzzkill among all the "you go girl!!!" posts. I just don't like calling things something they aren't. If it's not a breast cancer run, don't call it one. Signed Me, the apparently bitter old hag.