Monday club lol

June-  Louisiana;). Way down the other way lol!  That's why I am going to MD Anderson.  

June- this may sound crazy, but my Dr. Said he did a clean sweep on my nodes on my arm as well.  That not everyone has the same number.  I had 9.  The most he said he had seen was over 50.   I had never heard of this before and thought it was a set thing.  My arm is getting better and better each day.  My elbow was numb a long time. It was very red because I didn't notice when I was rubbing it on things.  

I am home for two days then have to drive 6 hours again, spend the night, chemo in morning and then drive 6 hours home.  My DH is calling tomorrow morning to see if MD Anderson will let us have the chemo closer to home and come in for the dr visits.  Although, if they get weird about it, it's just 14 weeks.  Sucks but I like looking at it that way.  14 weeks- countdown.  

yes I am doing the exercise to help me to get back my arm to full range movement. Still hurt two weeks after surgery.

jodi,

after i got cancer, i felt my life was so different, i am a lot more sensitive to what cancer actually means. i heard it all the time but i never gave it more thought. 

2013 was a bitter sweet to me. it sure was very eventful. i am still kind of shock to face my own mortality at the age of 41. i never appreciate life itself and now i cherish my life and health. i just hope i'll remain grateful and positive about life.

God bless us....

i wanted to start a blog about life in general after finding out i had cancer....it's very difficult to remain anonymous using the blogger...sigh

red - lol, i felt the same way about so many strangers looked at my naked body. and i also reached to a point that i don't care. i just un/dress in front of the nurse at the BS office...haha

about the blog thing, yes i kind of want to remain anonymous. i haven't told a lot of people, i don't want them look at me funny. i don't really care for them but i felt i don't want them to invade my privacy...sounds weird isn't it. and another part is i don't want ppl at work to find out. i don't really like that pity look...

i just created my blog on wordpress...so i can keep my privacy. i tried looking it up...but i couldn't find it, lol...i don't mind. i just want to put it out there, like putting a piece of message in a bottle and drop it in the ocean and see if i hear back...

June- I am 39!  Our paths are very close!  Lulu was a surprise baby.  I think I cried for more weeks finding out I was PG then finding out about BC;). They suspect the estrogen surge from being pregnant was the last push.  It was gonna happen.  The cells were there just waiting for the last price of the puzzle.  That is how I think about it.  There was nothing we could do.  The cancer was always there in a dormant state or not complete. Some never get that last item and we did. My Dr said it is called triggers and that I wasn't far off on how it happens.  She said it usually is 5 triggers.  But you can be born with 3 and gradually add the others. That is their theory.  Interesting!  

I am very grateful for time.  I read a post online saying after you get cancer, you can decide who you will be:

More on and forget the past- these people will pick up where they left off.  They will treat that part of their life like a bad dream.  Not talk about and move on.  She said they often get new jobs where people don't know they even had cancer.  They do not want to be known as the cancer girl.

Inspirational- talk about their journey and try to help others.  

Red- i completely get your open book thing.   I feel that way.  You want to know how it is going?  Sure, I'll tell you people but you ask lol.  That is how I feel too!

Had 3rd taxol today.  Drove 6 hours to Houston, slept, blood at 7:30 and chemo at 9.  Drove immediately back 6 hours and made home for 5:30.  I did very well.  My tummy has not attacked yet like it does.

 This is the round that people say the hair will go. I already cut my hair, but still have some.  I call Justin Beiber hair lol!!!  I will let you know when it goes;). I got my hat with hair ball cap.  It velcros to the inside and looks JUST like my hair I had.  It was long and I always wore it in a ponytail low that hung over my shoulder.  

I type too much lol!   Pipers how are you doing?

Hey guys, I got so busy dancing this week I forgot to check in.  I'm dancing every dance I can get to b/c in less than 2 wks now it will be over for awhile.  I have read your posts with interest though b/c we are all so different but in delightful ways.  Cancer has certainly brought out my philosophical side and made me take stock of what's really important and since the docs can't seem to agree about how bad it is, I've decided I'm just going to live life with as much enjoyment as possible b/c I may die on the table for all I know and I don't want to go out miserable.  Hey if you all are interested, here is a video of our group dancing and I come in starting at about 5 minutes, in the middle, and I'm wearing a black skirt and have blond hair and glasses.  See me dance!

I have also spent more time over on the alternatives page b/c that's my style of dealing with this.  I'm a slightly hippie new-age type who likes to do things naturally as much as possible and I've bought boatloads of vitamins, supplements, and am even trying the ketogenic diet. (Have a terrible sweets addiction.)  I figure it can't hurt and might help and if nothing else a lot of that stuff will strengthen my body against the effects of chemo and even boost the chemo.  I'll decide after surgery what I'll do about chemo though.  The main thing about looking up alternatives though is that it makes me feel empowered and I think that's more important than anything else right now.  Studies have actually shown that feeling empowered, all by itself, will boost the effects of the treatment.  This is not everyone's path though.  I also found out that the break-up of an important relationship (not including death) will raise your chances of getting BC within the next 5 years by 50%  And exactly 5 years ago my husband of 23 years dropped the bomb in a rather spectacular way.  I've reached the point where I'm happy to be single most days but it took a lot of sadness to get here.  I got this out of a great book I'd like to recommend to all of you:  Anticancer: a New Way of Life This is actually one of the better books I've ever read on anything, and that's saying a lot b/c I'm a bookworm.  It is very inspirational and then you all can spread the inspiration.  

Jodi, I love that you are getting mad!  It's not my style, but I have the feeling that this energy will carry you thru this and beyond.  I don't get mad often but when I do, I get sooo much done and you will too.  My cancer is just just pathetic, ugly, and lumpy and I almost feel bad about kicking her out,  but yours is a bitch.  They both have to go though.  How funny.  I can't imagine that MD Anderson will get upset about you wanting to take tx closer to home--I have the same deal and they completely understood.  They realize that people have lives to live.  

Red, I love reading about you and your husband--it sounds like you have a wonderful relationship and I think you're lucky that way--he will carry you thru the tough spots and then you'll be there for him if and when things go wrong, but let's make that 20 years down the road.  I agree with you that gratitude is so important--it's what got me thru the darkest days of the last 5 years and I came out so much stronger and attribute most of that to gratitude.  I like to do my gratitude exercise in the am when I wake up in my nice comfortable bed b/c it's so easy to be grateful for the bed and my little dog lying next to me.  And then I just expand outward.  I've even learned to be grateful to my ex for certain things and thought of a new one just the other day--I'm trying to hold on to that feeling.  

June, I know what you mean about not wanting to make things too known--I've told people I'm closer to and couldn't keep it a secret at the school I teach at--one of the kids happened on me one day just crying my eyes out in the classroom after school, before the dx even, and it scared him to death b/c I was sobbing so violently.  I had to tell the kids and this is a small town.  I didn't want it on FB though and didn't tell many fellow dancers b/c I don't want them to shy away or worry they'll hurt me.  I've found that the more I talk about it the more real it gets and I am more than my cancer so when folks ask, I say a little and then change the subject.  Also, when people offer to help, I do think of some small thing they can do b/c it makes them feel good to do it.  My one friend said she will kill me if I don't let her help so I'm having her drive me the 2-1/2 hours home after surgery.  

• Pipers- MDA said I could have it closer, but would have to have a local dr. Um- no thanks!  I am surroundedby idiots up here in NE LA:( No one up here I can trust with my life.  I could go to Baton Rouge, but it just seems like I'll suck it up and fo to TX. (I live where Duck Dynasty is-really no joke!)
• My hair is shedding a bit more.  Still waiting.  Hopefully it will happen before Tuesday bc I have to go back.  My DH is not coming this time my mom is.  DH would have his clippers to shave it, my mom might just cry.  Although I look like a teenage boy now, I really don't mind seeing it go.  It is that finally step that is hovering over me!  But!  I really don't want to lose my eyebrows and lashes!  Lashes especially bc the keep stuff out of your eyes!!
• My blood counts were low on the red side.  I guess I need more iron?  Got almonds, spinach and some meat to eat before Tuesday.  I was anemic during pregnancy this last time too.  
• Hit bulletins by mistake lol!!    Jodi

red - aw...that's gonna be fun. i am looking for a vacation as well. this holiday break was not a vacation. my deadline is end of jan. so depends on what i decide, i'll fly to FL for a long weekend in feb.

oh, that's a great deal red.

i really look forward to a real break. 

i'll go back to work tomorrow...not really ready actually but i guess it's good for me.

hello!! how's everyone? 

work has been pretty tough for me. monday especially, i was tired right after lunch. tue was good and today wasn't so good. i had to run a few errands at lunch time then i was tired the whole afternoon.

left work on time (i usually stay late) and i slept the whole way thru in the train....not sure how long i am going to feel like this...

Red - oh....did she talk to the BS afterwards? i am so sorry to hear it. i hope they'll get to the bottom of it soon.....

Red-  I would be seeing red!! Please keep us posted!!  

June-  are you just tired because or are you taking or getting meds?  You could be slightly anemic just because your body is working so hard.  I am as well, but bery very slight at his point.

Round four down!  I am one third done with taxol at this point.  Hair still hanging on.  I kept telling myself that it will be this week. We will see!

Today I wrote the most profound thing on my FB page.  My top ten things to not say to someone facing a critical illness, trauma, anything  that you could leave this Earth.  The response has been insane.  People are saying thank you for saying it. I have two friend with chronic ailments who basically admitted their illness and thanked me for my honesty.  It gave them courage to be honest as well.  I am going to put them on here for y'all.  Getting late now, but next time-  My top ten annoying traits and comments.  Maybe it will put a sweet smile on your faces:)

This was my post:

Advice- warning not usual upbeat from me:) Read on if you want a real lesson on how to deal with people facing life threatening diseases, accidents, or situations. I think some people might benefit from my experience so far in what I have heard or overheard people TRYING to help say:). I am trying to be blunt, but you know me- you will probably laugh at these because you will hear my voice saying it:). My personal top ten in no order just random thoughts in my brain.

1. Do not bring up the fact that we could all go at anytime. Yes, technically that is true, but are you waking up everyday with the Grimm shadow over your shoulder? No, if you went, you would be blissfully unaware. Unfortunately, this is not the same. Don't say it. It only makes us see red.

2. Do not reference your great flu of 2008 and how you overcame it. It is not the same even if you were hospitalized for dehydration.

3. Do not bring up anything you read or saw on the internet, Dr. Oz, or the Doctors type shows. These things are either not true or they are paid to say them. Seriously, people in my situation have a specialist team of doctors already who are not on tv.

4. Do not ignore or down play what is happening. The "aw they'll be alright". As I believe this for myself, trust me I see people everyday at MDA who are not "alright" however their friend sitting next to them is acting like this is a trip to a mall. Warning- I could also have a bad day lol. So I guess it is safe never to say this quote directly to me lol. I might go all kaboom if it was a frustrating day!

5. PRAY. Tell them you are praying and do it. This is the most inspirational thing you can do at all. We feel it-

Trust me!

That should have been first but I was thinking of what not to do lol;)

6. If and only if you have personally faced the Mortality Mountain, share your story with your friend. I said you. Not your great aunt twice removed on your father's side. If you were in a situation where the odds were not in your favor of being on the Earth much longer- share it. That is very uplifting. I look at my dad who has faced this mountain too many times to count and has spike a victory flag on top of it each time. I have his blood. But, free climbing this kind of mountain is scary and dangerous- Only professional advice needed apply.

7. Watch over their loved ones, especially if they have children. Make sure not to have any conversations that those little ears can over hear that might frighten them. They know what is happening. They don't need more anxiety accidental overhearing something that Oprah said about what their parent is going through. be upbeat a distraction. Do not ask how their parent is. If they want to talk about them, listen. I mean really listen. Stop what you are doing and listen because for a child to start to talk about parent in a situation is big. You are having a moment with them. And they trust you so listen.

8. I guess you should check on the spouse. Probably. Lol! They won't talk like the kids (if they are male), but listen if they do. If Spouse if female,

Be there because she is gonna want to talk a lot about what is happening all the way around;)

9. Do not expect personalized thank you notes. I wish I could sit down and write them. First, medication does not allow me to remember many that came and helped the first few weeks. Second, there is just so many at any given time to thank. Know in your heart that it is appreciated whatever was done, and it made a difference that day for that family. These situations all southern grace is thrown out the window. We are in survival

Mode. Do accept a wide thank you that is sent out by family, email, or a FB post.

Side note- personally I wish I could do this, but someone would get forgotten and we all know what would happen if one got a card and one did not in Monroe, LA lol! Just know you all are loved and appreciated dearly.

10. Specifically for women in head trauma or cancer:

HAIR. Do not ask when it will come back, how it will come back or "are you going to lose your hair?". We are fighting for our life people. It is just hair. That is what hats and wigs are for- let it be.

Sidenote- personally, you know I will rock any wig any color anytime. However, I overheard this conversation on the chemo floor and it bugged me. A wife of a patient was bothering a female patient about her hair. Did it come back the same color,

Texture etc. The patient was annoyed but politely answered. Then the lady goes on to talk about her niece who had breast cancer. And how her hair came back etc.

It was at that moment I knew I needed to write this post. I needed at least my friends and family to not be the idiot in a hospital heckling other patients or their loved one lol.

I hope this helped. I hope you weren't offended and if you were: you are guilty of something on my top ten! Insomnia has given me the time to finally write this out. Round four today: hoping not to overhear more! If I do, I'll let you know. I should start a list of dumb things said at MDA:). Happy hump day!

Just Keep Swimming!!