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.

Appeal?

So today I found out that, even though I called in JANUARY to be sure there was no co-pay for my Herceptin treatments, that there actually IS. I had even spoken with them a month ago and they have been "looking into it". The lady last month checked everything and agreed with me that I should not be paying anything more than a $5 injection co-pay. They are charging me $55. She had no idea where the $50 was coming from. So, 4 weeks later I get a letter saying no, it's correct. I called today and spent probably over an hour on the phone with "Dixon" (who was very polite and helpful, I might add, even the times my voice did get a little squeaky). Seems it's buried under "pharmacy". Yeah, even though the lady in the pharmacy department agreed that "pharmacy" means you get a little slip of paper, go into the drugstore and trade that for a bottle of something to take home with you. The Herceptin is a Class 3 pharmacy which has a $50 copay. (ooh, just a thought - a co-pay at the drugstore is supposed to be for a months supply so I COULD try it from that angle if nothing else). I should be lucky it's not Class 4 which would mean I would have to pay up to $3500. Yikes! I am missing Cigna more and more. Every time the word Humana crosses my mind. Blah. I digress. The bottom line is that, buried in the bottom of a bunch of phraseology 'n crap I don't understand even though I used to make my living doing Dixon's job, is the fact that there is indeed a $50 co-pay. Which I was told specifically, when asking that exact question TWICE, that there was not. Which, having been told specifically that there was NOT - I should appeal. Dixon told me exactly what to do. "Maybe" they will write it off, at least up to this point. I am not going to hold my breath. So, we all know I was conflicted about Herceptin anyway. I was planning all along to stop early - just hadn't figured out HOW early. I've been practically obsessing over it lately. When I got the letter, I decided to give it one last try and that would make the decision for me. $50 doesn't seem like a lot of money, does it? But -- 16 weeks of Herceptin so far is $800 that I don't have, that I don't know how I'm going to pay. That I will HAVE to pay anyway, if I don't win the appeal, even though I was specifically told not once but TWICE that I would not have to. Isn't that crazy? I have 24 more weeks to go if I stick to their schedule. That's an additional $1200. Total $2000 that I would not have had to pay under Cigna. That I was told-not-once-but-twice would not have to. Of course if we KNEW it was doing any good it would be a different story! But we don't, and we've gone over the studies, and the agendas of the drug companies and the pink people. Knowing that, and having read all the studies about side effects and heart damage, and knowing that I have 2 kids in college next year and -- I think I know everything at this point -- no. No, thanks. So I'll write the appeal letter and see what happens. I was skipping this week anyway to go on a field trip. I may go on in next week and talk to the doctor about it. Maybe get one more for old times sake? ha. Did I mention how tired I am of living in fear? Well, I still am. I am SO F'ING TIRED of it. I have not been a fearful person in years. I don't want to be this way. I'm afraid to stay on Herceptin and afraid not to. So I asked God to give me a sign. This is it. Stay tuned...

I Could get Hit by a Truck.

That's what I've always said. I said this about myself, not other people. Recently I've read in some other "cancer blogs" that this is actually something that other people say to the cancer patient, and the patient doesn't appreciate it. I don't blame them. It must be the equivalent of "better you than me" or "I would kill myself" that we hear in the triplet world.

I never want to be seen as presuming to speak for anyone else (unless I am quoting them, of course) so I feel the need to make that clear. If you don't have cancer, please don't say that to someone who does. Ditto any other chronic disease.

I couldn't sleep last night (more later, but for now I will just say who the HELL sends a cancer patient a LETTER saying there is a spot on the mammogram she should have rechecked in 6 months?) and I was thinking about this statement. Then as I started to drift off, I dreamed.

I could see, way off in the distance - almost at the horizon - a tiny pinpoint. I stand there in the road, watching.

I have no idea how fast it's coming. I don't even know what it is, yet. It could be a tree. Or a rock. Or a person. Or a speck of dust in my eye.

By the time I realize that it is, actually, a truck, I am still riveted to my spot. It is coming straight at me, but it's still so far away that I can't tell what it's going to do. I find myself obsessed with the truck and its path. How fast is it going? Maybe it will turn away before it gets to me? If it does hit me, what then. Maybe it will hit me head on. Maybe it will brush past me. Maybe somewhere in the middle. Will I have to be hospitalized? Will I have time to say the things I want to say to the people I love? Time to right the wrongs? Will I suffer greatly or go quickly?

The truck gets closer, and still I stand. I should move out of the way. It's so foggy that I should at least turn my attention away from it and deal with the things I need to do today. The truck is still far enough away. I should just forget about it for now.

My purpose for saying "I could get hit by a truck" is to remind myself to enjoy every day. None of us knows how many days we've been given, except God. I personally, truly believe that God has known the details of my life and death since before I was born, and there is nothing I can do to change that. That's not to say I shouldn't try to stay healthy (I know, it's difficult to explain this to someone who doesn't believe the same thing). So why am I obsessing about it? I DON'T WANT TO.

I have had friends die who were "hit by a truck". Kids my kids' age. Kids of my friends. Parents of my friends. I have seen people hit head on and people hit in slow motion. I watched both of my parents die from cancer, at separate times, in my house. I have seen the dementia of Alzheimers and the ravages of plain old age. Haven't we all?

I don't believe death is anything to fear. I am very confident in the life waiting on the other side.

I'm tired of thinking about this. I don't want to be a "survivor"; I want to LIVE.

Another Tuesday...

...Another Herceptin treatment.

I did ask last week about getting it every 3 weeks. It seems like everywhere I read about it, they're giving it on the three week cycle. I know that I would have worse side effects for a longer time than weekly, but hoped it would give me the "normal" days in between like I had while on chemo (isn't it odd that while I did feel much WORSE for a few days, I actually had MORE better days while on the red devil drug??).

It has been a very. very. VERY long time since I have felt anywhere close to normal.

Or - normal being just a setting on the dryer, let's replace that word with "halfway decent".

The nurse told me that they don't do the three week treatment there because of the larger dose and worse side effects. Given that I already had a reaction to one drug, they wouldn't consider me for it anyway if they did. OK. I can accept that.

Today I will ask them to give me an extra bag of saline, and slow down the drip just a tad. I've read that it may help, particularly with the headache. The headache is the worst - well, it's kind of tied with the insomnia, and since it's undoubtedly made worse by the insomnia, maybe that's really worse. Whatever. It isn't a contest.

I absolutely do believe that a shorter course of Herceptin is fine. I have come to realize that the stats given are inflated, anyway. I freely admit that it's fear that keeps me going in every week. As the side effects become heavier and more lingering, they are overcoming the fear. I would like to at least take a break for a few weeks. I will ask to speak to the doctor about that today.

It's time for this weekly angst train to take a vacation.

Edit: The doctor is on vacation, so I didn't talk to him about taking a break. Well, it's not like I need his permission, or like he doesn't already know I am not OK with doing the full year. I'm going to see how I feel this week. I had the nurse slow down the drip and give me an extra bag of fluid. I also drank 2 cups of water during the drip time instead of 1.

So far I don't feel any different, but I had a headache going in today and am more tired than usual so it may be from that.

Mammogram

I had my mammogram today. The lady remembered me from last year. I am torn between saying that was nice or scary. LOL!

Anyway, it was clean. The doctor set me up to have ultrasound on that side if indicated. Since it was clean, they didn't. She went to great lengths to get a good shot of my lymph nodes because that's where I feel the most "phantom" pain.

Then they did US on the left side. The doctor set that up strictly because of my worry. And I have to say I felt really stupid in there. They kept asking "well where do you feel pain? No pain? Then why are you here?" Finally I said I felt stupid and she said "oh no, don't". But I still did.

But it's clean! So, hooray.

I am going to cancel the PET scan. I had already decided that, but a comment a couple of entries below suggested getting the various tests 6 months apart. That way I am being checked every 6 months. I really like that idea, given the aggressive speed of the original tumor.

I am not really in any hurry for the other surgery. Sometime mid to late summer, I think. I should probably call for a consult to set it up. She thought maybe we could do the mastectomy and hysterectomy in the same surgery, but I never found out.

I know I can't go back in time, but I am really kicking myself for not pushing for the mastectomy at the time of the first. I say it wasn't offered to me - maybe I just don't remember. I decided I wanted it, but it was the weekend, and I was due to go in at 5:30 am on Monday. I didn't want to cause any trouble for anyone, so I didn't speak up for what I really wanted. I find that to be true in a lot of my life, and I aim to change it. Not that I want to be a pushy brat, but to know that I actually DO have the right to speak up and insist I am heard! I think pushing for these tests was a good start. I just need to get over the feeling stupid or guilty over it. Look out, world! It just might piss you off.

Results

My blood test results are in, and they're clean. So, yay.

I'm 99% sure I'll skip the PET scan for now.

Right now I'm lying around recovering from Herceptin. I did ask about getting it every 3 weeks instead of weekly. He doesn't like to do that because there is a greater chance of reaction and side effects. Given the reactions I've had in the past I can work with that. So, weekly it is.

Only....

I am seriously thinking of stopping. It's only a minor inconvenience at the moment, but will become more of one in the summer and when I get a job. But inconvenience is not enough of a reason to stop cancer treatment. Right?

I'm reading again, researching. I am not finding the numbers to be as great as I was led to believe. I am finding the idea of weekly IV toxins "just in case" to be more and more distasteful.

I am not completely understanding how it works if my tests are clean. Or how it keeps working once I'm done taking it. I have had trouble finding any online information on the subject that was not written in doctor lingo. I've found my questions asked on support boards and they all get the same answers - why wouldn't you want to take it? Who cares about the side effects if it helps?

Well, *I* care. I'm tired of this. According to the "standard" I have 6 more months. I know I don't want to do it for that long.

The more I read the more I wonder why I gave in to chemo and radiation. Fear, I guess. I feel I was tricked into radiation, although I guess I made the best informed choice I could at the time. I wonder what damage I have done to my body? I will never know if it was worth it.

I expect to make a decision in the next few weeks. Maybe I will take a break to see how I feel and if I start to get paranoid again.

But I'm ready to be over it.

Hair, today

Happy Lumpiversary to Me

I meant to post yesterday, because that was exactly one year from the day I discovered my lump. My, how time flies.

I have adopted a new philosophy and I think it would fit anyone in any walk or stage of life:

"Things could always be better. But things could always be worse."

So I had my doctor visit on Thursday and I told him I thought it was time we do some tests. "What tests do you want?" I said "whatever tests you normally do at this point?" he says, "we don't normally do any tests unless there are problems".

(Sidebar: really? Because how do you know if the cancer has come back? Isn't it better to know before it develops to the point that there are "problems"? I really don't know what is normal.)

Well, I say that me being paranoid is a problem. Luckily, he agreed - if only to pacify me. See, I knew being a troublemaker would pay off. Although the insurance co may decline to pay for the PET scan. He put that I am HER2+ which is aggressive and says that may get it done. Meantime I will have mammogram/ultrasound next week. They did blood tests for cancer markers on Thursday. I did not get a call with results yet and I forgot to ask when - they were closed on Friday anyway.

I am not as worried about getting a PET scan with doing these other tests. He said I would need all the tests anyway as sometimes the thicker tissue stuff doesn't show on the PET. I am going to see if I can go ahead and do the ovary scan now instead of waiting till August (again new ins. co, so maybe don't have to wait a year?).

Well at least I have gotten the ball rolling. I am still wanting a mastectomy on the other side and a hysterectomy, but if everything is OK would rather wait till later in the summer so I can do my fun stuff. If there is a problem I want them done NOW so I can be recovered in time to do my fun stuff.

After I get results I will call the surgeon and see what we can set up for later in the summer. I need to figure out my window between camps and trips and taking A. to college.

Another thing is from reading other blogs, I have learned that many (if not most, at least in the blogs I read) women who get Herceptin get it every 3 weeks instead of weekly. I am definitely going to ask about that. I would much rather lose a day every 3 weeks than every week, especially since I want to get a job. Putting that down to ask about this coming Tuesday.

I just want to live my life - Is that so hard. LOL