Better

I'm feeling MUCH better today. I just have very little energy. But I do feel better if I sit up as opposed to lying down.

I went ahead and got my hair cut, a little above shoulder length. I am surprised that it looks really cute! I would love to color it too because the gray is really showing now, but it looks cute even gray. Now I am hoping it won't fall out anytime soon so I can enjoy it. I'm glad I did it.

Normal

I wonder if my body will ever feel normal again? My skin feels too tight, and as if it's been burned, or my arm has fallen asleep. All the time. I guess I've gotten used to it mostly but every once in awhile I notice it again and it just feels weird.

No better

Day 3 (4 if you count chemo day) after chemo and I still feel like crap. I was able to be up and around for awhile today but when I got tired and lay down for 30 minutes, I got up feeling worse than ever. I feel drunk, or hungover, or completely drugged. I hate feeling this way!

Chemo

Tuesday I had chemo for the first time. I thought it wasn't so bad. I moved around in the room and read books and listened to my music. There were coffee and snacks. I found out there is wi-fi so I can bring the laptop next time. it was actually over before I knew it. It wasn't so bad, I thought.

Yesterday I felt pretty good too. I had to go back for a shot to stimulate more white blood cells since the chemo killed them all off. I am nervous because John and Andrew have some stomach bug and I have no white cells to fight it off. I am not good at fighting stuff off even on my best day, I always catch what the kids are passing around. But I felt OK and was up and around and even went to the grocery store. It's not that bad, I thought.

Today, I feel like total crap. All my bones ache. They told me that would happen because the shot is stimulating my bone marrow to make white blood cells. I feel like throwing up. My head is killing me and the kids are too loud even though they really aren't. I feel like there is no way I can do this 7 more times! I hope they're right that I will feel better tomorrow. Will I really have good days? I hope so.

Last night I was sort of freaking out wondering why I have to go through all of this. They said my PET scan is "clean". So do I really have to do this aggressive treatment? it's been explained to me several times and I still don't get it. I guess I really am in denial.

One down, 7 to go.

Port

Today I got a port put in. Funny, I've been telling people just that, and now some are saying "oh, that was surgery?" Don't worry, I didn't think of it as surgery myself!

It was outpatient and I was back home in 4 hours. As with the mastectomy, I astounded the nurses with my quick re-mastery of such things as urinating on my own. *wink* I got home and had some soup for lunch and took a little nap. When the time came for another pain pill I had waited a little too long and was hurting. I dutifully ate a snack and took the pill. But then I got so nauseated! I mean I was SICK. Ugh. I hate that more than anything. Since then I have been trying to move around some as directed but get nauseated again when I do more than just sit up in bed.

Hopefully I will be better tomorrow because I don't know about getting chemo when I feel like crap already! I am ready to start because the sooner I do, the sooner I can stop!

I missed a call from the finance manager at the doctor's office. She wants to go over my part of the bill, before we get started. Yay. I know that is going to hurt. I have been told there are resources for help and that I should apply immediately as they are not retroactive. Hopefully we can qualify. We have 6 kids to send to college and not even savings for that. I also got a call from the social worker, which I actually received because they called the home # instead of the cell. The entire family will be able to go talk to someone for free if they want/need. So at least that is something!

Emotionally I guess I am still pretty detached about this. Luckily I learned how to detach. I don't think it's the same as denial. It's just life and needs to be dealt with. "Being content in all circumstances" is what I am shooting for, although content doesn't really describe it right now!

Stuff

I have an aggressive form so I have to do chemo. I start that on Tuesday and get a port on Monday. It would have been cool if the rapture did happen tonight so I don't have to go through all that! I guess the Bible is right though and no one knows the day or the hour, woe to them who say they do! I wonder what the guy does with those verses? But I digress....

I have talked to a lot of people who have been through this and I am feeling confident...mostly. I don't know if the doctor said all the stages and whatever. Something about positives etc. Well I am HER2 positive is all I know. Estrogen and progesterone positive which is a good thing. The HER2 is NOT a good thing and is why I need the chemo. At least as far as I understood. I have found out that I need to get copies of all this stuff to keep in a binder. So I bought a binder and a bunch of dividers and I asked for copies from the surgeons office. I'll ask the onc. on Tuesday while I sit there for 3 hours getting poison, I mean life-lengthening serum dripped into my veins. (That is a little joke, by the way ;))

A friend of a friend gave me a goodie bag her women's group makes for chemo patients. It has all kinds of supplies she found helpful when she had it. It was really nice. She did suggest i might want to go ahead and cut my hair. I was going to do that yesterday but when it came time to go I couldn't go through with it. I guess I'll just let it happen naturally. I'll pick up a wig in the chemo room on Tuesday and I have a hat I don't mind wearing (I normally HATE hats).

So, I guess its really going to happen. I am not happy about it, but I have a lot of people that are counting on me to be healthy, so here we go.

meh.

I went back and forth on whether to say anything at all on FB. I know most of them IRL, but some of them from so far back it doesn't really matter, you know? But I have 2 class reunions coming up this summer (my actual HS and the one I would have gone to if we hadn't moved here), and the people in each group have really kind of gotten close over the last year or so through FB. So I decided to say as little as possible and anyone who wants to know more can just ask. But I decided I should say something at least. It as weird because I like to keep it fairly impersonal and I don't like attention. So of course I am the one who gets triplets and breast cancer. So much for no attention, LOL.

I think I am doing OK. There is always the possibility I am in shock or denial but I think the fact that I think that's possible probably means that I am not. I do expect to have a moment of shock and reality when the bandages come off. And I will probably have another if they say I need to get chemo. See, that is the thing I want to do the least, getting chemo. I hope I won't need it and he said I might not, if he got it all. I will get it if I have to, I am keeping an open mind. One good thing about talking about it is I find other people who have been through it and they are always willing to talk to me about it. The nurse who checked me in for surgery was one. I wonder if she was assigned me for that reason or if it was just a coincidence. There have been more like that too.

I think I'm "supposed" to be all emotional about it or feel like less of a woman or something. But I really don't. it's just life. I don't know if I will change my mind on that later, but I don't think so. We'll see. I'm planning on not thinking too much in advance. I already try to live that way anyway, so it's not such a stretch.

It does still seem sort of like a bad dream, but then again so has a lot of stuff these last few years. It really did seem to happen fast. I don't know why I decided to do a self-check that morning (just 2 weeks ago today). I think it was God telling me to. I know that sounds crazy, but it's what I think. I don't know how long it had been there. I had not kept up on the checkups as much as I was supposed to. The woman doing my mammogram was chewing me out for that and it really pissed me off. Like, how is that helpful at this moment? Dont' you think I have beaten myself up over that enough, and what good does it do anyway? Then I found out the lump didn't even show up on the mammogram! It was only on the ultrasound. Fucker! Anyway there is serious doubt whether mamograms are even useful or if they could even be dangerous. the point is we found it NOW and took care of it.

We haven't said the word "cancer" to the younger kids yet. The older ones figured it out on their own from what we did tell them, and we answered their questions honestly....as we will with the younger if they have any. I want to wait to say that word to them, because as you know their only experience with "cancer" is watching my parents go through it. So my fear is that just the word will really freak them out. But they are old enough to understand that there is a difference. Just waiting for the right time to talk to them about it I guess. I admit I am sort of putting it off.

So from here, I will just sit around and try not to overdo it for the next few weeks. I will see an oncologist in 3 weeks to discuss if I need further treatment. I do know I don't want my Dad's oncologist - he was a total asswipe. Of course he is on my insurance, LOL. But there are others so I will choose one of them. He might be the best guy in town but he was so condescending to my Dad that I don't think I could look past that. I was signed on for a lot of stuff this summer - co-director of Cub Scout day camp, Girl Scout day camp, as well as just the day to day scout stuff. I had just resigned my band boosters position effective in June, so at least I won't have to worry about that.

Susan G Komen Foundation

One of the really humorous (to me) ironies of this whole thing is this: I hate the Susan G. Komen Foundation.

I mean I truly detest them. Ever since January of this year when I read a really disturbing article about how they use the money they collect. It disturbed me so much that I wrote this piece for my private blog:

______________________

I just read what is very likely one of THE most disturbing articles I have ever seen. The article can be found at huffingtonpost dot com with this pasted after:

/2010/12/07/komen-foundation-charities-cure_n_793176.html

Sorry for not just posting a link but they would be able to see where we're clicking from and I do not want them finding this blog in that way.

The basic story is that Susan G Komen foundation has been busying themselves suing small charities and forcing them to stop using "for the cure", regardless of WHAT cure they are raising funds for. They are even making them not use the color pink!

Susan G. Komen Foundation should be ashamed of themselves!! I seriously hope there is such a thing as karma because I really want it to turn around and bite them in the ass. Speaking of boobs! Indeed!!

I am proud to say I have never given one red cent to Komen other than the odd product I may have been purchasing anyway that had a pink ribbon on it. My reason for not giving was mostly that after watching my parents die from cancer, I have absolutely no confidence in "acceptable" treatment methods over alternative. When they died, we asked for donations to alternative research and Hospice, not to any traditional cancer places (which is what they would have wanted). It's not that I am against standard treatment, and God forbid should I ever have to make the choice I don't know what I would choose. But I have seen enough that I have consciously not given any donations.

From now on, if a product I was planning to buy anyway happens to have a pink ribbon on it, I will make the fully CONSCIOUS decision to NOT buy it. I will also make the conscious effort to get the word out so that others can make informed choices!

I have also been leery of ALL the pink and the products and such. Why breast cancer over all other kinds? I don't know why I was leery, but I just was. And there is NO shortage of breast cancer in my family. It is definitely in my best interests to find a cure. And yet I was leery and consciously NOT donating.

Now I am SO glad I didn't. Why would anyone continue to donate money to them now? If I give to them my donation will go towards threatening another legitimate case and also take money from them! If I give to one of the small charities my money will apparently need to go for either defending the lawsuit, or them having to buy all new stuff in order to comply! This is one of the most despicable things I have ever seen!

SHAME ON YOU Susan G Komen Foundation!!

Edited to add:

This is a link to a site called "Charity Navigator". Please click the link on that page to read the comments, which go back farther than the HuffPost article.

Here is a link to SGK's Wikipedia page that dates these events as far back as August, 2010. There is no link to the WSJ article so I will look for that.

http://en.wikipedia.org/wiki/Susan_G._Komen_for_the_Cure

In the interest of fairness, here is a "response" from the SGK Facebook page:

http://ww5.komen.org/uploadedFiles/Content_Binaries/HuffPostResponse-120910.pdf

Personally, in light of what else I've read I find this to be very insulting.

Also, this is a post made on the SGK Facebook page that I would like to share. I edited out the woman's name.

Post #1

My name is (edited), and I participated in the Breast Cancer 3 Day, in Seattle WA, September, 2009. It was a great experience and I met some wonderful people. The volunteers at the event were first rate. It was a grueling task, which affected my body for months afterward i.e., aches and pains, blisters, plantar fascitis, but I thought it was for a good cause, so I rarely complained, figuring it was a small sacrifice for a good deed.

Imagine my shock (when I was watching The Colbert Report of all shows), to discover that approximately one million dollars a year, of donor dollars, goes to suing various Mom and Pop charities in order to retain some morbid ideal of owning the phrase 'for a cure' or 'for the cure.' Shame on you. I've read your canned response, which implies that people are too stupid to know what charity they are donating to. I've donated to a lot of charities, some with the words 'for the cure,' knowing that I was not donating to Susan Komen. Believe it or not, SKFTC is not the only charity people want to donate to. You have insulted and embarassed not only donors, but people like me, who have raised dollars for your cause. Never again will I participate in your events or donate to
your foundation, and I would imagine that I'm not alone. Talk about cutting off your nose to spite your face.

My daughter's grandmother and my good friend is fighting terminal breast cancer, and I walked the 3 day in her honor. This is what infuriates me the most. The blood, sweat, and tears, pushing myself so hard as an ode to a very brave lady, who was so proud of me for doing this in her honor. If she finds out about this, it is going to take away some of the 'shine' from her experience. To add insult to injury, she and her husband donated $50 to your foundation, when I walked the 3 Day. How does that make you feel? Taking money from a hardworking farm wife with terminal breast cancer, when 17% of that $50 goes to cover your administrative costs and so that you can bully defenseless charities? (I've come across that 17% figure as I've looked into this law suit issue) Unbelievable.

In closing, I raised the required $2,300 from friends, family, neighbors, and businesses, 100% of that went to Komen. I am a single mom, a registered nurse from Montana, and I could barely afford to make the trip to Seattle. My donors, as well as millions of other donors, are fighting this recession along with everyone else. To spend even one red cent of their hard earned dollars on lawsuits is a travesty. I feel like apologizing to every one of my donors for your terrible ethics. I think that the only way to save your face is to apologize to the public and small charities, and put a stop to the lawsuits, and while you're at it, spend a little less on salaried employees and spend a little more on breast cancer research. I know that you have done a lot of good in the fight against breast cancer, but this time, you have completely crossed the line. Perhaps the phrase 'all good things must come to an end' applies here.

Sincerely,
(edited)

Post #2

Sorry for the long post, but this is what I emailed to Komen, and I hope some people take the time to read it here. Please continue to donate to breast cancer causes, but really look at where the money is going...you can donate to research directly or donate to local causes, too. Thank you.

Post #3

Actually, I screwed up in my earlier post...I've read that only 17% goes to breast cancer research, while the other 83% goes to administrative costs. If this information is wrong, I hope SGKFTC corrects me.

_____________

Funny, huh? That now I AM faced with having to decide what to do with my own treatment and that now breast cancer IS the main thing for me. Haha! I guess the joke is on me. BUT I have not changed my mind on the Susan G Komen foundation, they will not get one red cent of my money. Look, I know they have done good things in the past, I just think they have their priorities screwed up now. I don't know if their motives are good or not, they may well be. But please, if you are moved to donate to breast cancer research on my behalf, do your homework and pick one of the other worthy organizations, not just the biggest and loudest one out there.

I wrote this in January, before I knew I would face breast cancer myself within a few months. I like to be fair, so I did look to see if I could find any recent information on the subject. While I was unable to find anything more against Komen, I was also unable to find any showing that they had eased up on any of this. If the day comes that I do find out this is no longer going on, I will be sure to post it as loudly as I posted this first one - until then, they are on my shit list!

How

How did it happen that a month ago today, I was living my normal life, feeling pretty good and things had been going smoothly lately -- to this? How long had that thing been in there, and how did I not notice it earlier? I mean it was pretty big. It didn't hurt, but still. Can it really be that I am sitting here at 2:00 am, Unable to sleep because my side is hurting from where my breast used to be? This is not supposed to happen to me. And how can it be that it's been a month already? I didn't even notice till I typed that first sentence.

It's How You Live.

I have always loved this song.

Today I made a decision that was tough but necessary. I resigned from a volunteer job that I really, really wanted to do. After my diagnosis I thought I could still do what I can and that keeping busy would be good for me. I do still think that, but the person I was working with is just, for lack of a better word, toxic. While it was hard to give up on something I love and was doing for my kids, it feels very good to just be RID of it, and her.

~~LYRICS~~

Wake up to the sunlight
With your windows open
Don’t hold in your anger or leave things unspoken
Wear your red dress
Use your good dishes
Make a big mess and make lots of wishes
Have what you want
But want what you have
And don’t spend your life looking back

Chorus
Turn up the music
Turn it up loud
Take a few chances
Let it all out
You won’t regret it
Looking back from where you have been
Coz it’s not who you knew
And it’s not what you did
It’s how you live

So go to the ballgames
And go to the ballet
And go see your folks more than just on the holidays
Kiss all your children
Dance with your wife
Tell your husband you love him every night
Don’t run from the truth
‘Cause you can’t get away
Just face it and you’ll be ok

Chorus
Turn up the music
Turn it up loud
Take a few chances
Let it all out
You won’t regret it
Lookin’ back from where you have been
‘Cause it’s not who you knew
And it’s not what you did
It’s how you live

Oh wherever you are and wherever you’ve been
Now is the time to begin

So give to the needy
And pray for the grieving
E’en when you don’t think that you can
‘Cause all that you do is bound to come back to you
So think of your fellow man
Make peace with God and make peace with yourself
‘Cause in the end there’s nobody else

Chorus
Turn up the music
Turn it up loud
Take a few chances
Let it all out
‘Cause you won’t regret it
Lookin’ back from where you have been
‘Cause it’s not who you knew
And it’s not what you did
It’s how you live

‘Cause it’s not who you knew
And it’s not what you did
It’s how you live

The Story.

okso, a little backstory. On April 6 I woke up and was a little sore in my left armpit. I thought it was strange but one time I ran to the doctor all panicky because there was a painful lump in my leg and it was just a swollen lymph gland from a virus. So I wasn't freaked about it at all this time.

My husband was home that day so we could go to a funeral. When I was in the shower I suddenly, randomly, out of nowhere really, decided I should do a breast check.

So I did.

And what I found was a big lump over my left breast.

I still wasn't panicky. I mean something like 90% of those things are nothing, right? But I showed it to my husband and called the doctor, who agreed to fit me in that afternoon.

Long story short - on April 18 I went in for surgery. A biopsy, results of which would determine the rest - either a lumpectomy, or a mastectomy. A lot of issues went into me deciding to go ahead with a mastectomy if the biopsy was positive. Maybe I'll go into them later.

Bottom line is that here I sit a little more than 2 weeks later, with half the front of my body chopped off, still painful from the tubes and the cutting into various nerves and all that, thinking maybe a blog would be a good idea.

I don't have a family history of breast cancer, according to my doctors. I always make sure to tell them that several of my Dad's cousins have had it. They say that doesn't count, but I tell them anyway. Now I have just heard that there is some new thinking that it might actually count. Whatever - we have a family history now, don't we?

I breastfed 6 babies, for extended periods of time. This is supposed to lower your risk. Oh well! (three of those babies are triplets. We didn't have a family history of those, either! Guess the joke is on us!)

I am 47 years old. I had never had a mammogram. I did self checks but not that often. I get my girlie checks every year and it isn't time for the next one yet.

The lump did not even show up on my mammogram, just as they warned it might not. It was on the ultrasound. Which begs a question I will get into later.

I am completely convinced that God told me to do that self check that day.

Soooo...now what?

Really, I don't have time to be sick! I have plans and things to do, you know? I've spent years just birthing and breastfeeding babies, now there is baseball and Scouts and summer camp and band boosters and laundry and all that fun stuff. Life doesn't seem to slow down just because I have to. At the moment I am waiting for the oncologist to call me (hopefully tomorrow) and set up a visit so we can see what's next. The good news is the surgeon says he "got it all". All means the entire left breast plus 15 lymph nodes (only 3 of which were positive, which he says is good). My little dream world tells me this means I am "done" other than the fact that I will have to stuff one half of my bra for the rest of my life (when I can ever get a bra on without pain that is). That I can pick up and plan the next scout meeting and drive to the band concert and get on with my normal little life. Realistically though, I know they are probably going to want to do radiation and chemo "just in case". So we'll see. I am not in denial, I am just choosing to pull a Scarlett O'Hara moment. You know what I mean. I am not thinking negative, either. I believe I am thinking quite positive. I would just rather face each day as it comes. "Why worry about tomorrow? Each day has trouble enough of its own".

I tell myself I miss "normal". But then again, there really is no such thing as normal.

So there you have it, the basic gist of the story.