Whirlwind

It never ends.

This is the only conclusion I can come to at this point. Every single time I think I have finally gotten over the hump, past all of the junk, back to some sense of normality....and it hits me all over. And the worst part is ...it's not a logical cycle....it's maddening in the way it loops back in and on and around itself and I never know what is going to trigger any of it. They say there are 5 stages of grief;

1-denial- ok...we all know I have lived there off and on since the beginning
2-anger- yep..visited that one too
3-bargaining- hmmmmm....I don't know that I have hit that one simply because I can't even come up with any suitable thing to bargain with....ummmm if only my genes were different?!?!?! How would that even work?
4-depression- ok....that is a harder one...I would like to think that I am not depressed...but I am beginning to wonder if I am indeed....not like I'm gonna off myself, no worries...just ...sad....at all the changes and loss
5-acceptance- I totally thought I got to that one quickly, granted I had no choice but...

I just wonder if these aren't out of order for me.....and how long they are going to hang around? Can't I just get over this and move on? That is what I want but...like I said, the big ugly C doesn't seem to think that is the way it should go.

Basically two things have happened this week that have thrown me for this loop I am in.
1- I realized due to the fact that I am in incredible pain after pitchball practice that I may not ever be able to play baseball again....and I am sad, so sad it's hard to describe. Even though I haven't played other than with the kids for years..to have that taken from me too.....I'm just tried of being limited...and I hate being in pain because I have very good "mind over matter" abilities and its not working this time and I don't like it, not one bit.
2-I found out about a 10year old girl in Cali who even though she is still prepubescent has been diagnosed with Triple Negative Breast Cancer and will now have to have a mastectomy. I just sat and cried for 20 min when I saw the posting on it. And then I got scared....Lexi is 10...what would I do? This is not something I want her to ever have to deal with, and I already know that she has a 50/50 chance of having the BRCA2 gene from me but.....10?!?!? That would just break my heart. Don't worry, she is fine...it just hit way to close to home for me.

So now I sit....back in a fog in some ways...granted, it is a functioning fog, but a fog none the less. I can still do everything I normally do....I am just not "here" all the time. And...the worst part is the manifestation of this has been in the way I talk....I am searching for words. I know what it is, totally know what I want to say...but it won't come to me and when it does, it's more often than not just a similar sounding word...but generally not a synonym so it doesn't fit...and it is frustrating as all get out.

So now I shall go ice my hurts and then sit in the sun....maybe the Vitamin D will boost my spirits:)

Hope you all are getting and enjoying Spring finally:)

Blog ya later-
K

Seriously....

it's bad enough that I don't take other people's advice...but I can't even take mine...although I made the mistake of telling Lexi about my comment in my last blog and she actually followed through..yes..whacked me upside the head with a magazine..and it hurt! But I couldn't get mad because after all she was just doing what I'd asked and...even though the gleam in her eye made me think she liked it a little too much...it was a very sweet gesture that she would remember and follow through.

So now I have written a very nice email to the editors of that magazine asking them why they didn't include TNBC....to which they(she) made the mistake of emailing me back that this article was about significant advances in Breast Cancer treatment presented at the symposium and there was nothing significant regarding TNBC......

First-nice choice of words...nothing significant....slap in my face

Second-should have double checked that info love ...because in this day and age of ..oh I don't know..the INTERNET...anyone can google just about anything...and I did! And guess what I found!!!! One of the keynote addresses on Sat. of the symposium was about how they had found a direct link between an over expression of a growth factor receptor bound protein GRB7 and recurrence in TNBC and how inhibiting this growth factor not only cut down recurrence but helped the chemo drugs to work more effectively!!!!!!!!!!!!!!!!!!!!! Now I don't know about you, but I consider that pretty freaking significant! And so I sent her a response with that link and said how more than anything I was saddened that the writer and editors didn't think that some of the first research that has happened about effectively fighting TNBC was "significant".

Third-And I didn't realize this until Ed pointed it out but....chickypoo editor lady should really have been more careful about how she responded because this could be construed as racism! Now you may be wondering how I got there so I shall explain. TNBC in America strikes mostly African Americans as they make up 85% of those diagnosed with TNBC. And even more alarming, the 5 year survival rate for them is a mere 14%!!!!!!!!!!!! That is horrific. So to say that nothing significant was talked about when in fact it was... basically says we don't really care what happens to that group. I have considered forwarding all of this to the Rev Al Sharpton but I am not sure I want to head down that road just yet.

Anyway...while I am still adrift in that ocean I talked about last time....I am not so panicky about the sea monsters and storms that may pop up during my journey to the other side. I realized while reading all of this stuff that my doctors treated me as aggressively as they could and with as much haste as they could and so now it is out of my hands and theirs really. I am content to trust in the plan that has been laid out for me and once again go back to celebrating today..and tomorrow...and all those tomorrows I have yet to see. Now I can't guarantee that I won't slip and fall into panic mode again..in fact I am sure I will, but...I'm ok with that too...and besides...that's what a nice glass of Riesling is for:)

So for now I am planning on surviving(yes surviving) the next 6 weeks the girls have left of school and the complete zaniness that will entail while I check things off my bucket list(yeah...I made one!), enjoy the fact that my hair is still growing and getting cuter everyday(or so I keep telling myself when I sigh at the fact that it does what it wants and I have no control) and plan for a summer of sun and fun to make up for last year:)

One last thing...this year I WILL be running...ok ok, walking, in the Komen race in St. Louis on June 13th with Ed and the girls and anyone who wants to join us. If you can't, or simply don't want to risk the fact that it could be 90 with 90% humidity that day(which believe me I totally get) you can support us by going to-

www.komenstlouis.org/site/TR?pg=personal&fr_id=1050&px=1085687

Thanks.

Blog ya later-
K

Stupid, stupid me...

I started reading again.....and no, not anything good but articles everywhere about cancer. My type of cancer, triple negative, to be precise.

It all started because of a quarterly magazine I get which has been really informative about various treatments and groups and kinds of cancer except this issue. There was a 6 page write up on all of the recent findings on the various types of breast cancer with wonderful information in the strides the medical community is making in being able to effectively treat women and prevent any form of metatasizing and death. With one..ONE exception-triple negative. In fact the only thing even said about it was a disclaimer that they are basically still at a loss as to how to effectively treat it!!!! Great...wonderful....stupid cancer-ugh..hate you...really I do.

I stopped reading about cancers this summe because I was already so overwhelmed with just the fact that I had it let alone the fact that I had the kind that the medical community calls the "killer cancer". And so just recently I thought maybe I should start looking at articles again since I am in a better place mentally and physically as well.

I have since realized that is not necessarily the truth. Yes, physically I am doing great...fantastic really-in fact if you didn't already know you wouldn't ever guess that I had been through the past year because I have no visible scars so to speak(and that doesn't include my boobie scars 'cause I don't generally go around showing those off, but I will if you ask b/c I think it is important for other women....and even men, to see that you can look ok and to take away the "taboo-ness" of breast cancer and mastectomies and reconstruction....however...I'm not gonna flash you in public so ask me in private if you want:D ) But mentally...I'm not so sure.

By that I mean....when I stop and think about it or read about it....I totally break down..literally sobbing and shaking because it scares me to death(I'm crying right now...which is making it incredibly hard to type-sheesh). My type of cancer has the highest rate of recurrence out there. And....the fastest rate of it too. And...if that wasn't enough to deal with....the worst rate of metastasizing in the brain too.......stupid STUPID cancer. And here is the final whammy.....those rates are not even relative to having lymph node involvement in the first instance of the cancer-which means even though all my nodes came back negative....that means nothing!!!!

Ultimately the worst part is this....none of the numbers are the same, but they are all bad and....I'm really scared....and I hate being scared-I don't watch horror movies for that precise reason....but I can't exactly click the remote to change the channel on this and so now I don't quite know what to do.

In some ways my journey has just begun...yes I did the chemo and the surgeries but.....that is comparable to getting all the supplies and loading the boat.....the actual voyage is through the murky waters of the next few years and the unforeseen dangers that could be lurking like the giant sea monsters of old. Yes, they probably aren't real but.......you can't be sure until you get safely to the other side...and as we all know now, while there may not in fact be giant serpents that prey on seafaring vessels...there are some big monsters of the deep out there and who knows what could set them off..let alone the unpredictable weather that can come in without sufficient warning!

So I am now floating into the dark.....sometimes paddling furiously(as if that will help-ha) and other times just letting the current take me at will, all the while knowing...even though I hope and pray against it, that I may not make it to the other side.

So I ask this of you, my wonderful family and friends....if you see me reading a cancer magazine or a health magazine please, please rip it out my hands, roll it up and whack me on the head with it! I promise to not take revenge and in fact, depending on where this might happen, I will probably bust up laughing at the reactions of anyone else around-and we all know how wonderfully therapeutic laughter is:)

So for now I will close my google tab with triple negative cancer results in it and wipe the tears and head outside, because it is a beautiful day in the Lou and the sun will do me some good.

Thanks for listening.

Blog ya later-
K