I'm having a moment... pardon the darkness

Today I have to two goals with this blog...

1) Tell you about my doctor appointment
2) To get as many people to pray for a special friend and her family

I want to start with my friend.  I can't go in much detail, however my friend has been fighting her own fight and it has been a hell of a battle.  Recently, something happened and more tests are to come to find out the future.  My heart pours out to my friend and their family.  I feel helpless in so many ways - I don't know what to say and I feel like a lifetime away.  This is the best way I know how to get more prayers sending up for them.  I love you! Many hugs and prayers my special friend.

Today I had a Radiation Oncology appointment.  I like my radiation oncologist - she is very open and upfront with the information.  So, you're not allowed to start treatments and then stop them and then pick them back up sooooo my vacation is causing me to push back my treatments for a few weeks.  We will start the prep work June 25 and probably start treatments Thursday of that week.  With that being said, treatments will end mid August.  This is pushing itself into my other plans that I have been planning.  Hopefully, it won't interfere too much.  She has calmed my nerves about several things and she is compassionate when it comes to the things that hit me hard; deciding not to have kids of my own, going into menopause at 29, and just the suckiness of this disease.  She is upfront when we ask questions and doesn't cut corners when telling us the cold truth about what's to come.  Rather than just having one radiated breast, they both are going to get it b/c my other one is sooo damn perky it is gonna get hit.  She said "there just isn't a way to get it out of the way because it is just sooo perky."  This is as she is trying to push it out of the way and putting a good amount of pressure on and both of us are kind of giggling.  I know it isn't funny, but 1. just my luck 2. come on really - tell me it isn't funny! Who ever complains about having perky boobs????  It is either she radiates the other breast or radiates more of my lung.  Sacrifice 2 implants rather than just 1 is the lesser of two evils.

I can get sun at least now when I go to the beach without having to be overly protective of that area.  Obviously, I'll still be vigilante to make sure I don't get completely burnt however I can tan up and be ok.  She was joking as we were walking out and said... "I'll show you sunburn when you get back." 

With the events of today, it has put what I am debating about into perspective more.  It has been a hard afternoon on my emotions and thoughts.  I wonder/analyze things a lot naturally but today, they are a bit more in focus as to why I'm doing things but other ways, more confused.  It's hard to explain.  My spirits are high, but my heart hurts right now for my friend.  I think it made some of the conversation I had with my radiation oncologist happen when otherwise it wouldn't have.  The truth about cancer treatment - there is no right answer and it doesn't play fair.  Which odds do you go with... the odds of getting cancer in 15-20 years because your so young and will live to that point in the radiated area or do you just take the chances with no radiation and just don't get pregnant or do you take your risks of not doing hormonal therapy vs. the complications of going into menopause at 29.  You are basically trading one bad thing for another.  Trading one death for another. You are killing yourself in one way in order to live a little longer.   When you think about the fact that some chemo is made with arsenic and radiation is something that we are always told to stay away from since it will kill a nasty death... it is kinda depressing and you really have to do some soul searching.  Before, the decision was easy - I say easy but I didn't think twice about doing chemo and the surgery but I find myself now, questioning every step I go.  I told my husband today "I wish I had a crystal ball and Fringe was real, so I could see the future of this reality and alternate universes of the various decisions I could follow."  I just want to be normal, live a normal life, be a normal wife to my husband.... I realize that is what makes me special and I'll never be normal but at 29 not being scared to get pregnant for fear that it could kill me and the worst thing I have to worry about is what we are doing over the weekend and if I have the right pair of shoes to go with it. Not saying that the issues that plague a normal 29 year old aren't important or as simple as shoes but just not to have to be concerned about things that aren't life threatening. 

Sorry this isn't a happy or uplifting day, this is one of those days of soul searching where % and risks and shit (pardon my french) start floating around.... "mama always said there'd be days like this."

Surprise!

The girls at work gave me the necklace pictured above; I was totally surprised.  They peeped into my cube; 3 of them; and I wasn't sure what to think of the three of them.  They said "we wanted to give you something"... These ladies make me laugh (and I mean, belly laugh, tears rolling down my face, snorting laughing) and are so sweet.  Thank you ladies for accepting into the group and being so kind to me.  I appreciate it and love you guys!

Thanks to my cancer family! Love you ladies

When I went through my cancer in 2008, there was an amazing woman who had gone through what I was getting ready to go through.  She understood what I was getting ready to go through and the feelings better than anyone since she was close to my age.  It was difficult in the beginning to talk to people who were in the "normal" age range for breast cancer, I needed that younger perspective. They'd had their children and had the opportunity to breast feed, they'd gone or were going through menopause at the normal time - I hadn't even had the opportunity to be pregnant (we had just started talking about having children seriously) before the chance was ripped from my dreams, I was going to go through menopause momentarily for chemo at 25 how is this chemo and hormone therapy crap going to effect my chances for a family, and ulimately am I going to meet my maker before I turn 30?  How was this going to effect my wants for a family? This isn't a normal "young" person thing, how did you handle the stares, the questions, etc?  How did it effect your relationship with your husband? She helped me prepare mentally for things, brought me peace with what I was going through, and helped me navigate the road. 

She had gone through radiation and after chatting with her online a bit, she has calmed some of my anxiety about radiation. Once again Kim, you have helped me cope with the reality of the situation and I thank you.  I can never say thank you enough. 

I've met some amazing people on my road with cancer.  The network of support is amazing, even though situations are different, they support you through it all even without saying words sometimes. Just knowing there is someone that you can lean on when times get  you down, is awesome.  I love the ladies I have met on the journey - you know who you are :)

Hot Bald Chick Ain't Comin' Back - Sorry Buddy

When I went bald during chemo the first go around I had 2 friends who were married.  They were hilarious and we would have very in depth and interesting convos to say the least.  They are open minded about their thoughts and we would discuss different topics and toss ideas around.  They helped to open my mind to different thoughts... I loved our convos! We were very blunt with each other and didn't hold much back which created a large amount of trust between the 3 of us.  The reason for this info is to provide a little insight into our relationship and why it was ok for the conversation to happen in the first place.

When I was about 1/2 way through my chemo in 2008 I was of course smooth and bald.  I smiled and laughed everywhere I went.  We were all hanging out and my friend's husband made the comment about me being "the hot bald chick."  So that has been my nickname ever since.  He was happy that hair had started to come back but at the same slightly disappointed because I was a cutie without hair - if I may so myself.  Fast forward to the other day when I posted that "no balding for this chick" and a personal message came across a few hours later with this...

hey i just told [husband] the good news and he is super happy for you but then got a little disappointed that you wont be the hot bald chic again, now youre just the hot chic and apparently the bald thing makes it x10. (hope you got a laugh out of that, if not, we are giant assholes and apologize)

This made me crack up laughing because I could really see them having this conversation, his face of relief that I didn't have to go through chemo, and then as he realized I wasn't going to be bald anymore and her cracking laughing and trying to comfort him.  I appreciated the laugh, recently these guys moved away to live their dream and I so miss them but can't be happier for the two of them.  They moved the week I found out and really missed having her around to go and grab a drink with me.  I could tell her anything without worry that she would say anything and she would give me her blunt feelings about it.  Thank you lady for that!

There is a large part of me that is happy that I don't have to go through chemo again but at the same time, it is the part of the treatments that made me learn so much about myself.  I learned how to stand tall with my head held high and not care who looked at me or what was said.  It gave me the strength and confidence that I hadn't had prior.  Let's not forget the not shaving for about 8 months, automatic air conditioning to the scalp, and a few other extras.  All I'm saying is, it is an experience that made me stronger and if I had gone through it a second time, maybe I could have learned more about myself.  But, I am COMPLETELY ok with not having chemo any day of the week.

Speaking of confidence in yourself.... I wish more people would have confidence in themselves.  There are plenty of strong people out there who don't believe in themselves and then there are those who think they are the world.  The only person who will believe in you and pull you through situations is yourself. You can have the support of the people around you but you have to have the strength to pull yourself out of the depths of your personal hells sometimes.  I went to my personal hells several times during 2008 and I had to find that strength to climb those dark, slippery tunnel walls back to the surface.  (When I was in these moments, I saw myself in a well type of hole with a bright light sooooo far away and I was in a cold, dark, moist place.  Sometimes it felt like I was falling through levels only hitting a false bottom, crash through it to the next level.) My family and friends held me and supported me through those times but it was me fighting my demons inside and keeping myself from being buried alive mentally.  Because I had to do that, I developed a confidence that made me stronger and more stubborn.  I am proud to be who I am and I show it.  I am not cocky in the way I carry myself and talk but confident. Unfortunately, people read my confidence as a threat or cockiness.  Those are the farthest things from my mind when I meet you.  I am a down to earth, loving individual. Do I have opinions - strong ones occasionally, yes - do I have thoughts that aren't main stream, yes - am I afraid to do things I've never done before, hell no I went skydiving for crying out loud, am I afraid of making mistakes - horribly terrified of making mistakes but I'm not afraid trying things, offering ideas and testing them out.   Please take the time to meet me and get to know me before you make opinions about me or other people.

I think one of the sexiest things about people (male or female) is when they are confident with themselves, hold their heads high even in times of great pain, and know who they are and what they want out of life.

And my arm says.... IT'S HOT!

My arm tells me when the weather decides to change by swelling.  Oh the joys of having breast cancer and having 30 of your lymphnodes removed which are more than 90% of the ones you have. So do you want a quick biology lesson????


Lymphedema

Lymphnodes are like tiny little pumps within your body.  They help move lymph fluid around your body and remove nasty things to keep you healthy and remove infection from the body. So, when you remove these puppies, you still have fluid flowing but you don't have those pumps helping to pull the fluid out of the extremities.  When the fluid gets into your extremities and you have reduced capacity of lymphnodes, the fluid gets stuck and stays there.  In order to get the fluid out, you have to perform lymphatic massages and compression.  If you see me rubbing my right arm, chest, shoulders, back or side (on the right side only), I am attempting to do a massage to get the fluid and lymphnodes in other areas of my body activated to accept the additional fluid that I will be moving manually.  If you see me with these beautiful sleeves, horrible wrappings on my fingers, and/or wonder Ace looking bandages on my arms (only if it gets severe do the Ace bandage looking things come out), that is me compressing the fluid out.

So, why does it flare in the summer time?  There are several reasons:

1)  Heat causes your vessels to expand in order to keep your body cool.  In doing so, more fluid is moved around the body and gets trapped much quicker than I can move it out. 
2) Getting cuts or scratches can cause it swell also since when you get cuts or scrapes the lymph fluid is the fluid that goes to push bacteria out and keep it from getting infected. So, with extra fluid going to the rescue...
3) Exercising or extreme activity levels because you are moving fluids around more with increased heart beats.
4) Flying because of the change in elevation.... you can actually watch it swell as you ascending... but unfortunately, descending doesn't take it out... grrr... had a dude argue with me one time on this, I about snapped his head off but I remained the adult in the situation.

Things that help to control it:
1) lymphatic massage/manual drainage
2) compression
3) Stretching - yoga
4) Aerobics
5) Swimming does wonders! Yet another reason to go the beach!!!!!!! Woooooot! June 18th baby!

Now, I am bad and don't abide by these things because these sleeves are uncomfortable, create a lot of looks and questions and sometimes I just don't feel like talking about it, people telling me what I have and how to handle it who have NO idea what it is, and people thinking they know what it is and telling me how to handle it.  I don't mind questions at all, in fact I like educating people on what it is so they are aware (the reason I do this blog) - I know it is something that people don't see all the time but don't try to lecture me on how I should try this or try that when you don't know what your talking about. 

People who worked with me at HomEq understand that I was open to questions but I would give them my disclaimer "If you want to know something, please ask. I don't care how personal or embarrassing you think it is, there is no stupid question.  You may not have wanted to ask your grandma questions and I am learning from this as I go and want to help people understand this disease and not be afraid of it.  So ask the questions you have, however, understand that if you ask me a question, I will tell you all the nitty gritty details.  I won't leave anything out."  Everyone respected that and they would ask questions because we were all young and obviously, not many 25 year olds go through this thing.  My point in saying this is...... if you have questions, please ask - I'd rather you ask then for you to have questions and wonder. My venting point above was for those individuals who say... "you don't know what your talking about", "well when I swell I do this to get it down (unrelated to lymphedema), just do that and then you don't have to wear those things", etc.

**Ring Ring**
Class, this is all for today's lesson! Have a great Memorial Day weekend!!!

And we have a "go" pattern....

My Medical Oncologist called me today and his consultation agreed that chemotherapy isn't necessary! Woo hoo!! I know... everyone is sad they don't get to see this fabulous bald head come out and play again and no auto AC at the beach this year.  I am excited tho about no chemo for the obvious reasons... nausea and potential to murder my heart.  I will have to do 7 weeks of radiation and then hormonal therapy which I'm not thrilled about but if doing that for 2-3 years keeps me from having to get this news again, it's worth it I guess.  So personal summers....here I come!!! I go on Tuesday to meet with my Radiation Oncologist for the final meeting before I start the radiation treatments.  Let's get this show on the road :)  If for some reason the hormone therapy is rejected by my body and I just can't handle it like what happened the original time I tried it 4 years ago, then we might look at chemo at that time however, they may have a difficult time figuring out what kind of chemo I can have since the chemo I had the first round was hard core stuff and could kill my heart. 

Tomorrow is Friday! Just in case you forgot :)

Holding Pattern and Blackberries (not the phones!!)

Holding patterns are theme in my life right now.  Still sitting in a holding pattern waiting on the Medical Oncologist to consult with his peers at UNC Chapel Hill on options with hormone therapy and chemotherapy.  I just want to get this thing on the road so that I can be done with it sooner.  I really don't feel like putting my life on hold for this thing again.  I have so many things that are being held right now because I'm waiting to see what the decision is and also trying to get things wrapped up with radiation before other things kick in.  Can't elaborate right now on any of those things but hopefully soon I can.  It just seems that everything that I wanted and goals I had made for myself decided to hit all at the same time.  It is amazing how lucky I am, how my strengths and ethics have made a name for themselves in so many ways and the support that I have from people all over the country.  

I have 2 dreams right now... be cancer free FOREVER this time around and one other thing. I hope I have the opportunity to make them both come true.  I had set a goal a few years ago for something and have worked like a crazy mad woman to meet that goal and I can taste the opportunity.  Once again, holding patterns are my life themes currently. 

My incision looks amazing! It is finally not feeling irritated and swollen after a full day of work.  The DermaFlex is finally starting to peel off and the scar is almost not even noticable.  I can't say thank you enough to my surgeon, he is absolute amazing.  He takes care of me physically and emotionally.  He treats me like a human and an adult which I think sometimes they want to treat me as a child since I am so much younger than their "normal" patients.  I'm not normal in any way of word, so why should I be a normal patient! Ha!! I make them laugh, I joke about my condition, and I think sometimes they think I'm just plain looney.  I am sure they are concerned as others are when they hear me talk about what's happening so non-shilantly that I don't take things seriously and understand the overall impact of the situation.  I hate to tell them - I know! Probably better than they realize but I'd rather laugh about it.  Crying about it only depresses me and I hate being depressed.  I saw my grandfather suffer for years with cancer, I saw it eat away at his body taking a physically strong man and break him down to a frail, delicate man.  But his faith remained strong through it all.  I know the effects of cancer all too well and want to avoid that outcome at all costs. 

Went to get my hair trimmed the other day and told my hair stylist that I was thinking of getting some really light highlights put in however if I paid $80 and then found I had to have chemo causing my hair to fall out 2 weeks to the day after the first treatment.... I might be a little pissed and so would the hubby.  So once again..... holding pattern! Ha!! Wow!! Good googly moogly....

We have several blackberry vines around out fence that are domesticated with no thorns but the sweetest things you have ever put in your mouth.  One of them has grown up making a beautiful little shade area for the dogs to hang out.  They are in the process of producing fruit.  I am sooooo excited to see them this year.  Last year I was pulling 3 cups a week of if not more - there were plenty that feel to their rotten death and plenty that went into Chris' belly before I had a chance to grab them - and this year the thing is even bigger.  So... any blackberry recipes you may have, I am ready and willing to try.  If you are close and would like a bag or so blackberries, let us know. I'm afraid they won't ship very well sorry for those elsewhere.  The picture of the whole bush is only a partial of that one bush.  It is MASSIVE! The other one of the other side of the house isn't quite that big but it still puts a bunch of fruit out.