I am tired...

I am tired of this weird rash on the bottom of my legs that itches like crazy – unless I take Benadryl but then I pass out.  I could take a steroid, but I would rather itch being as I am JUST NOW starting to lose some of the water weight.

But now I am a little worried about being not being on my chemo this weekend.

I still don’t to have energy all day long. I can go a few hours, but then I crash. It sucks to have this “want to do” list, but never getting it ¼ of the way done.

 

 

My patience is gone at  600 pm and it sucks because I haven’t been with Ian or Eric most of the day, but I am just so tired in the evening my patience just vanishes.  I have really been working on not being grumping to them.

I think I might need to start PT again.  My walking in wonky and it is making my knee hurt.

I am tired of not having feeling in my whole left leg.

I am tired of having to have Eric to everything physical. I SO want to help him move our sh*t to the new house, and him not have all this weight on his shoulders – for me to be his other half. I feel more like a growth that he has to lug around.

Blah – I am just blah.

Luckily we have a birthday party to go to today and all my friends will be there too – really, I think we throw our kids these birthday parties for us mommies to get together?!?! Whatever, the kids are happy! OH, and us too!!

The truth...

Ian asked me if there was any such thing as a real happy place.

I told him of course – in your heart and mind you can always be in your happy.

People tell me all the time that I we handle “all this” so well…that they don’t think they could handle it like Eric and I do.

I tell everyone the same thing…yes you could…there is nothing special about me.

I just allow my heart to shine through more than some others…don’t think I didn’t have to learn how to do this.

As humans I think our first response to anything is to put a wall up, shelter our hearts, and put on any kind of armor we can find – to protect ourselves…from what – well whatever is attaching us!

I just want to remind everyone that you too, YES YOU have it in you to fight whatever battle it is that you are fighting. Some days, you might have to take a day off; some days, you have to give yourself time to morn whatever it is you are going through; but when that voice says you can’t do anymore or you aren’t strong enough that is when you HAVE to listen to your heart – it is a tiny voice compared to the loud yelling of the other voice saying you can’t.

But you can…even if you can only take a 1/12 a step forward for however many days, you must keep stepping forward.

I was complaining to Eric yesterday about me not being able to walk long distances because it has been almost a year since surgery.

He laughed and said NO, it has been almost a year since surgery ONE and you reset that for surgery TWO and reset again for surgery THREE – so really you are at 2 months post-surgery.

I let that little voice speak instead of my heart.

It always makes me laugh when I look back on things like this and I am amazed at hard on myself I am…which I know we all are that hard on ourselves.

But the thing is, would we ever expect others to do this crazy shit we ask out of ourselves – NO.

Remember that the next time that little voice starts in on you – stop and listen for your heart – for the truth.

New chemo

I must say, it was odd to leave Dr. H’s office with a bag full of chemo pills…odd.

Eric and I joked when we went to lunch that we shouldn’t leave the chemo in the car...after the pharmacist telling Eric we are SO lucky to have the insurance we have being as 2 weeks of this little beauty can be a pretty penny…and I mean pretty.

I am now on Xeloda – I will take 4 pills in the morning and 4 at night; 2 weeks on and a week off.

The major side effect of this chemo seems to be dry, pealing and cracked hands and feet…they it will be like farmers dry/cracked hands.

I am going to get some gloves and footy boots to put thick cream on in the morning and night to help combat this…

There are the possible other side effects – throw up, diarrhea, nausea, sores in mouth BUT most those are “not common.”

I will let y’all know how it goes!

I am going to paint today – a commission for a 1^st birthday and I am SO excited to be able to lose myself in paint!

Nervous…

I go see Dr. H today to find out what my next path will be.

I go back and forth within myself – am I ready to be back on a chemo??

In a way yes – I feel like I am more protected – especially with my brain.

In a way…HELL NO – I am not ready for the unknown – fatigue, poo issues, appetite, nausea – all these are “maybe” side effects and those I won’t know until I have already jumped in.

On a plus side, my face is starting unswell from the roids!

I wish...

Today is going to be a hard day – today is Casey’s service, then her husband has invited all her friends over to their house to meet each other and celebrate her life.

It is so hard because I KNOW what great friends we could have been if were to meet at a different point in our lives…we were great friends for the little time we knew each other…but I know there was more to our friendship.

We would laugh at the craziness of cancer land we both lived in.

We would bitch about stuff the bothered us and we couldn’t tell others – stuff that others who didn’t live in cancer land with us would ever understand or didn’t want to hear…how we were afraid of dying, how we didn’t understand why cancer attacked our bodies…any body’s body, our poo issues – I swear I haven’t talked so much about poo since Ian was a baby, the stress we feel about trying to balance life in cancer land while keeping one foot in the real world…how easy it would be to let cancer land swallow us up.

I never asked her if she wanted kids – it seemed unkind. I knew what the answer was at this point in time.

I never asked her what her dreams were...I don't know why.  I guess I knew her unspoken dream - to have her cancer be gone...which I knew.

She did get the Jeep she always wanted but sure didn’t get enough time to enjoy “the hell out of it” like she wanted.

We talked about God and how hard it is to keep faith through all this – through so much.

I am all out of words…

My hearts hurts…it hurts for so much…so much.

MRI and brain oncologist

MRI was clear…all looks greats!  I was even able to follow up with my radiation do on the phone being as it all looked so good…NOW that is what I like!

We went to see Dr. G yesterday, brain oncologist.

He sent in some of my original breast tumor and some of my brain tumor – let me just tell you science is CRAZY and anyone who thinks – oh, just eat better and it will cure your cancer – wrong.

Here is how I understood it – Eric might read it and leave a whole list of different things to add!

So, my original breast cancer started with mutation in 3 areas – call them A, B and C

My breast in the brain has 5 mutations – A, B, D, E and F

So somewhere along the way, my body go rid of C but the cancer adapted that and grew D, E and F

The good news is, there are drugs that cross the blood brain barrier that work on some of these…we can’t work on all at once. 

BUT we have choices.  As of now we have 2 choices – I am reading the possible side effects and go from there.

1 choice we will let in our bag of tricks if needed down the line – it is a skin cancer chemo.

All and all, we left Dr. G office feeling great. 

He did tell me I was a very “neat” case – I guess if you are into that stuff I do seem neat?!?!

Him and Eric had as great time at the white board drawing cell path ways – once we told him Eric was an EE, he was like, this is just like that – one circuit closes and another opens – still don’t know what that means!?!?

But I have my PET scan today and am really anxious for those results – I haven’t been on anything for 2 months and to say I am not at all nervous would be a total lie.

New House Pics!!

Our house is coming along!
While we were out of town, George, a family friend came down with his son and another guy, Will - a wonderful 17 year old from our neighborhood and my mom did a ton of work.

 

I am SO excited!

I am HOPING we can start moving in next weekend??? Eric might tell me I am crazy, but it could happen.
We are planning on moving in one room at a time and only moving the stuff we need/use and then I am going to have a huge estate sell with all the left over stuff, all my craft stuff and whatever else isn't needed - I am SO excited to purge!!

Good bye my friend

“I can’t change the direction of the wind, but I can adjust my sails to reach my destination.”
Jimmy Dean

One of my girls who I have been on this whole cancer land adventure with this whole time passed away last night from f*cking cancer.

I can say so much and so little right now about it all.

As in large group of people, there was a smaller group…us 3.  All around 35, stage 4 breast cancer, fun loving girls trying the live our lives without cancer getting too much in the way.

We did it…we all did it for 2 ½ years until now we aren’t all doing it anymore.

It all happened so fast.

Casey was beautiful and had a smile that would light up a room.

We would make totally inappropriate comments to each other about cancer and laugh.

The first time we actually met in person we had been texting and emailing each other for a long time, so when we finally got to meet and hug, it seemed like I was seeing a really great friend who just lived out of town.

I wish I could take the pain away from her husband, family and friends.

I wish I didn’t have to think about these wishes.

Casey my friend – I love you and I will miss you.

Vacation

I always wonder how we end up so tired after vacation…oh yea, I remember – the different sleep schedule, me eating like complete crap the last 2 days (I did SO great the rest of the time), oh and the 7 hour delay getting home.

BUT all in all our vacation was great!

 

The cousins had SO much fun together - it was so great to see them all together...AND there were no major fights!!

The adults had a great time too...it is so great to be able to see everyone.

Now, back to life here.

I had a MRI yesterday, see Dr. Groves (brain oncologist) Thursday and a PET scan on Friday...honestly all of which I am looking forward to...I am ready to get back on something and out of this holding pattern.

 

The care givers...

I would like to take this chance to say thank you to all the care givers out there.

So many people tell me and others going through a disease what an inspiration we are to them, but I think a lot of people forget a HUGE part of that equation – the care givers…the ones who are with us through it all – the news, the plans, the process of it all...every part of the journey.

         They hold our hands when we get bad news all while holding themselves together.

         They hold our hands while getting treatments, tests, IV pokes and so much more.

         They hold the weight of their own world, our world, our children’s world – all on their    shoulders – all the time.

         They keep their live going all while balancing this new life thrown at them also.

         They are the gatekeeper between the patient and outside world – to protect us from others…others who don’t intentionally harm us with their words or actions, but we need a gatekeeper.

I realize way too many patients aren’t as blessed as I am – I not only have my wonderful husband who I can’t imagine going through this journey without, but he can’t imagine letting me go through any of this on my own.

I have my family and friends also, who circle around me and cover me with love whenever they can.

I believe we all need to be givers daily…even if we aren’t care givers in a traditional sense we need to all be givers in any sense to those in the world…daily.

                When you see someone who needs a hand – lend it…so what if it is a homeless person and they are asking for a $1 and you don’t know what they will spend it on…if you can help him/her at that point in time – do it!

              When you see someone who needs love – give it…even if it with a smile.

              When you a friend in need – do all you can to help.

             When you see an empty space in the world that needs to be filled – fill it…with love and kindness.

I know it sounds like a big task, but it doesn't have to be...start small - something is better is nothing - in any sense.