Thursday, February 21, 2013

Two Baldies in Bed

Well, for once I always hope that the Dr's are going to be wrong.  This time I was hoping that they didn't know what they were talking about and I wouldn't actually loose my hair. 

I got home from Kelowna on Friday the 15th.  We did K's birthday on the Saturday.  That was my highlight and my big to do for the week.  She was excited and so was I... we all were.  We were just getting ready to leave and I had a fluff in my hair so I went to pull it out.  Well, a tuft of hair came with it.  I instantly started to cry.  Ken said, "Babe.  It's ok.  We knew this was going to happen."  I dried my tears, took a deep breath and we headed out.

I left my hair alone for a few days and then asked my girlfriend if she would wax my head... again. Well, my hair easily lint rolled out.  I figured waxing would just result in a big globby mess of hair on a stick so I came up with the great idea of duct tape.  Well, let me tell you, it worked like a charm!!

I'll give you another shot of the back.  I still think it's disgusting but I don't have to look at it so that's ok.
It is healed up nicely apparently.
So to get my complaints in, I still am on the huge dose of Dex.  I feel like my tummy is going to explode because it distends my guts and I swear my cheeks are about to spring up some stretch marks.  They are so tight and hard.  When I smile I literally look like a chipmunk... with a face full of  nuts... like, nuts for two years! 
As much as I hate the way I look right now, I will show you an honest picture of what I look like.  Only because I promised to be honest in this journey.  I honestly like hiding out right now because I don't like the way I look... I am sure you wouldn't either.
I am literally "Fat Boothed" without the freakin' app!  Bet you can't do that!  And I hope you never have  too.  :)
I am getting around much better.  I still get very tired, but that is to be expected.  I have a very short patience rope and I get irritated very easily.  But I feel that I am slowly making progress and that is all I can hope for right now.
I am waiting on finding out when my next MRI is and after that then we will know what steps are next.  Hopefully the light brain rad will have been enough and we'll be able to let it go at that for a while - or forever. 
I still feel really positive and I am not going to let anyone else determine my life for me.  It will be what it will be and I am honestly so thankful for every single day I have and every moment that I get to look into my children's eyes and my husbands... tears... they always come.  As my girlfriend says. "These dang things just keep leaking."
We have to hand over our computer to the computer doc because some pop was spilled on it by some Atwood children so I am not 100% sure when I will blog again.  But I wanted to give you a little update.  Again, so redundant, we love you and are so thankful for you all!

Friday, February 15, 2013

Some time.

Dearest family and friends. I hope this note will come across in the true manner I intend it too. I have noticed many small changes since surgery and honestly some days they are really hard too accept, but this is my life right now, and I have to be ok with it. I need to tell you about them so you are able to understand me right now.

I literally have no filter... You thought I was bad before, well, I am worse now. I say things that I don't mean; well, they come out all wrong and sound rude. Again, not my intention, but I am just really slow at coming up with what I am really wanting to say. It's very frustrating when I realize after what a jerk I sounded like. Please don't take offence, that is not my purpose.

I am exhausted. I sleep at most for 4 hours at a time, and then because of the meds, I am wide awake at the worst hours of the night, for hours. Which brings me to my next point that I know is going to come out all wrong...

Visiting hours! I love that you love me no matter what (right? Well that is what I like to think anyways!), and I thank you for that! I love you too and ALL of your support. But I truly need probably a few weeks to just come home and adjust to life again, get off some of my meds, get some rest and re-focus. I would love to have a short visit, but I seriously can only get away with about 20 minutes every once in a while. It is very hard for me to focus, and just having to be "present" takes a lot out of me. I can't concentrate for very long and as much as I want to hang out and be normal "G", this is my new normal for right now and I need those of you that do love me to be able to understand that to make my life easier... See, totally rude!

I guess I just don't want to feel more overwhelmed in any way than I already do by pressure to be someone that I just can't right now. It's not that I don't want to see you or visit you or hug you or thank you for all you have done. I just don't want you to take offence if I can't muster even 20 minutes one day for a visit, or come to the door if you drop by, or if you do and I kick you out after a few minutes. I do love you and appreciate you more than you will ever know, I mean that!

This is going to sound all wrong too, but I feel I need to say it. For the next little while, if you can't get a hold of me, or my poor Mom who has been screening and answering all calls for me because again, even talking on the phone is a huge ordeal in concentration for me, PLEASE check my blog for updates. I promise I will do my best to keep up to date on here for all of you. It will make my Mom's life easier and my life easier and if you haven't figured it out by now, I am all about me currently... Showering, maybe making my own lunch and breakfast (which seriously takes me almost an hour- I'm not kidding. I truly am going to have to rebuild myself from the ground up all over again. Everything!) mentally preparing to be as present for my kids as possible, and really focusing on what I am trying to say is what fills my days.

So how have I been doing... For the update part. Like I said a million times, I am exhausted. When I get too tired my eyes stop working. Really. Like I can't see out of them clearly. I loose parts of my vision and that is when I know that I have really over done it. Sometimes, most times, I try to lay down for a sleep, and it escapes me. So I lay there for a few hours with my eyes shut until I feel somewhat rested and can see again. But I am cranky because I want to sleep but don't. This is usually accompanied by the "clicking" in my head with the feeling of holding a 45 pound bowling ball on top of my shoulders.

On the healing front, Dr said that my surgery area looks really good. I can actually lay on the back of my head now for a while without pain. And more importantly to me, even though I only have one day left, I can lay on the neck and head support for for treatments without wanting to turn inside out!!! It really, REALLY hurt for the first four days probably... like make you want to barf hurt.

I can't drive. Dr said I will probably have to talk to my gp about that. Ken said I will know when I feel like I will be able to to that again. I can't even go out by myself in public right now it's way to overwhelming and I feel so lost. I am pretty much a child all over again.

I have no body strength. I have gained 20 pounds in my tummy and face and lost muscle mass in my legs, butt and upper body. Going up a regular flight of stairs is a big deal for me. I have trouble lifting my purse from the back seat if it is too heavy. Dr said that all of this is normal being through what I have been through and more importantly, the steroids do this to you, which I thought was funny... loose muscle mass. But I can't do anything to build it up right now anyways except a tiny little workout that I have made up for myself consisting of 10 mini squats, 10 calf raises, 10 arm curls with 2 pound weights (I used to do 15's), maybe a little walk on the treadmill for a few minutes or forcing myself to go up the stairs two times in row... but I have only done this workout like 5 times. There are days I can't even go up the stairs without pausing for a rest for my legs. My newest goal is to get my arse off the toilette without pushing on my leg to be my 20 pound backside up! I wasn't kidding when I said rebuild from the ground up.

I feel that my head is moving around better which does feel good. I am not as stiff as I was, although I am still very guarded at what comes at me, how fast and if I can turn my head certain directions at times. What a lot of silly information!!! But it's what I am experiencing.

Well, I have been writing this for over an hour and I actually feel tired again so I am going to make the most of that feeling for how ever long it lasts, 5 more hours would be nice! I thank you for your understanding. I love you, and I will be back eventually, I hope I am still the same me I was before, because I can't really accept the new me right now... she's just a little too much for me, to rude, not enough filter and way to impatient!

Thursday, February 7, 2013

Blogging live from the couch.

I'm back!  Like you missed me anyways.... what, it's been like 5 days?!  Well, I have to tell you all about my first treatment, second, third and fourth.  Monday, I had a really crappy day.  We found out that I actually needed 10 treatments, not 5.  Dr. M was very apologetic and said how sorry he was, that he can't do light full brain in 5 treatments... that's not light.  I was really sad to find out that we would have to come back another week.  And to compound to that news, was my first treatment which I was nervous about for whatever reason.  Fear of the unknown I guess.  But I was reassured that the most common side effects are hair loss, dry and itchy scalp.  Perfect!!!  I can deal with that. 

Before my first treatment the radiation therapist went over the most common side effects and added nausea (which I was trying to block out) and a few others when you are doing full brain (dizziness, bowel and bladder problems, vomiting... I can't remember the rest).  My first treatment went ok other than the fact that they had to take a picture before they started treatment which took a bit longer and my head was hurting a little from laying on the table so I was ready to get out of there when it was over.

The actual treatment only takes around a minute, but with set up and everything it's around 5 minutes total.  They use the mask that they made for my face and literally strap my head down to the table and I lay there, really still and in exact place.... can't move.  Today I said that Ken would probably love me to have one of those masks at night so I can't talk when we go to bed!  The girls laughed and said their husbands would probably love it too!

After my first treatment I was feeling ok.  But I was feeling a little nauseated, but I was sure it was in my head.  I took some gravol and went to bed and I was feeling alright.  By the time I woke up Tuesday morning I was feeling a little gross, but took more gravol and was ok, other than the fact that I couldn't walk anywhere on my own, I was so dizzy.  We went to treatment and by Wednesday I literally felt like I was going to die and I wouldn't be able to finish treatments and my life was over.  I was so sick.  Dry heaving in the morning but because I hardly ate anything on Tuesday there was nothing to come out.  I loaded more gavol and we headed to treatment for 8:35am!!!  I haven't been up that early on my own free will in a while so it felt awful and I felt even worse.  Still, I couldn't walk without help, dizziness was even worse.

They were a little worried about doing my treatment before I met with the Dr for my weekly check up and he said that because I hadn't actually vomited yet it was ok to go ahead with treatment.  I was honestly worried about it being strapped to the table and feeling how I was feeling.  Would I choke on my own barf and die??  Head strapped to a table and no one in a  room to rescue me for a few seconds?  The thought did cross my mind.  But we did treatment anyways, and by the grace of God I made it through.

We met with the doctor after and he said it's not a hard fix, we just keep upping the Dex until I feel ok.  Honestly, at this poin,t  I said to Mom, "I would rather be chubby and feel like I can walk on my own and function (mildly at best) than start to thin out and feel the way I was feeling."  Dr upped my Dex from 2mgs to 4mgs.  He said it takes the Dex about 5-6 hours to start to work so it would still be a  while before I started to feel any better.  We also spoke about Vancouver.  He said, HOPEFULLY the light full brain radiation will be enough to keep things in line and we can keep the sterotactic radiation in our arsenal for later if we need it.  Here is my next favor to ask of you.  If you can pray, send positive energy or good vibes, whatever you believe in and whatever you have been doing, our way so that we might not need to do the other and we can keep a card up our sleeve, that would be greatly appreciated.  I will have to have another MRI 2-3 weeks after I am done here and then my "case" will be reviewed by Dr and his colleges to make sure that the best decision is made on my behalf (makes me feel good to know that there are many eyes on what's going ok, not that I don't trust my dr, but I am thankful that there are a few people who review it all).

Mom and I made it out to the car and I barfed in my mouth (all two crackers I had for breakfast that morning) and I sat there with the door open for a few minutes to compose myself.  Then I ate the two cookies they gave me and got the courtesy Dex they gave me into my system.  I wanted that crap to start working as soon as possible.  We made it back to Vernon and I went right to bed.  I think I stayed there until almost 5 and was still feeling really dizzy and unable to walk on my own when I got up.  And knowing that I would most likely feel the same way morning, Mom and I decided to call the cancer center and see if we could talk to the doc on call.  He called back and said I could absolutely up my Dex and he suggested up to  12mgs.  We upped it to 10mgs. 

I took the Dex and two gravol (doctors orders) and went to bed.  When I woke up this morning I kind of felt human again and most importantly I was able to walk on my own once I had my legs underneath me for a few minutes and I wasn't nauseated!  Well, I am still taking gravol almost around the clock, but today I actually ate and walked around all by myself.  That was huge!! 

I need to get into bed because my appointment tomorrow is at 8:10am and then we are heading out of town so I need to get into bed while I am ready for bed.  I just wanted to let you know how it went and how it's going.  If you hear me complaining about Dex and what is happening to me because of it, please remind me I did say, "I would rather deal with the side effects of Dex (weight gain, facial hair and zits!! remember how awesome they are!) than be sick and barfing."  Ya, the other side effects for me are better than barfing!  So if I am complaining, remind me that this isn't forever and I actually said I would rather deal with the Dex and be able to deal with life!!

Sunday, February 3, 2013

What's up.

I still feel really out of it, so I will do my best for updating my blog.  I do have a funny story to share with you.  Mom and I arrived in Kelowna on Thursday evening around 6:30pm.  We met up with our new friend Moe for supper.  She is so kindly letting us stay at her home in Vernon while I am doing treatments in Kelowna.  It is so nice of her.  Her place is beautiful and we have space to move around and do whatever we please.  It is a blessing.  Yes, it is a bit of a drive into town everyday, but that's ok.  The Fit is cheap on gas.

So we arrived in town and met up with Moe at Subway.  Moe and Mom ordered their food and then I ordered my salad.  I pretty much eat and sit now adays, so I thought a salad would be a good supper item.  It was!  I had lettuce in my bowl as a start.  Then the young man asked me what else I wanted.  I stared hard and said, "Lettuce."  He looked at me and did nothing.  I again, repeated myself, staring intently at what I wanted next on my salad.... "Lettuce," came out again.  He kind of motioned at the bowl like, "Lady, it's full of lettuce."  "MOM!!!! I need help!!! I want those pink things in my salad!"  Ya, tomatoes!!  I was staring at the "pink things" the whole time but my brain and this poor kid couldn't read it (my mind that is)! lol  I felt really smart in that moment let me tell you.  I did manage to make the rest of my salad up using proper words and items that weren't already in my bowl.

Friday morning we had my Dr apt with Dr. M.  We found out that we are going to be doing the radiation here, like we knew about and then off to Vancouver in another three weeks for the more pin point  treatments.  So it is going to be busy and we'll be on the road again, but at least we'll be able to get it all over with and then I can get home to health and healing.  I so desperately want to be at home and I want to heal there.  I miss my family so much already.  It's so hard to be away... again.  At least it is not for 6 weeks this time.  But I just feel like I have been "away" so much over the past few years, I just don't like it.

We got the pathology report back from the tumors.  It is the same breast cancer in my head as in the rest of my body.  Like Dr. M said, "We didn't think it was a new primary tumor anyways."  I also found out from the report that I am actually NOT Her2+ and I am actually triple negative which does have a better prognosis.  We are still in a crappish situation, but I will take that silver lining where ever I can get it.  Even just hearing the words, "better prognosis" lifted my spirits beyond belief. 

After we met with Dr. M, I had my mask fitting and another CT.  Now I am all ready for Monday morning.  I felt really good on Friday so of course I over did it.  Mom and I went here there and everywhere and I paid the price yesterday.  Mom kept asking me, "Are you sure you want to go here, or there?"  Yes, I sure did.  Like I said, until my eyes popped open yesterday morning.... then I wanted to die!!!  My head felt like it was going to explode, my eyes hurt and I couldn't really move my neck.  Luckily I had Mom to the rescue.  A hot bath was first on the list, followed by a hot towel on my neck and some drugs on board.  After she got breakfast into me, it was back to bed.  My whole body hurt.  My legs ached from just walking around the day before, my back has been killing me, I think because I have been "resting" so much and I was just generally miserable.  I crawled into bed and cried and cried.... BUT, can't cry too hard because it makes my head hurt even worse.  I felt pathetic.

Finally my body relaxed though and I was able to rest for a few hours.  I felt better when I woke up.  My back still hurt(s) but at least my head was ok.  I pretty much sat on the couch all day yesterday and watched TV.  It was exactly what I needed.  I fell asleep on the couch at 8:30pm so Mommy put me in bed and I didn't get out of it until 9:30am.  I was awake before then, but just laid there and rested.  I am still a little stiff today and my back still hurts, but I do feel a lot better today than I did yesterday.

I miss home terribly right now.  Ken took the kids skiing yesterday and I was happy that they got to go  out and have some fun... I am just sad that I missed yet another "thing".  I just miss them right now.  I know this isn't forever but it gets hard sometimes.  He said W and K did really well.  Next time they go up they can do a lesson on the t-bar!!  I was so excited for them.  I can't wait to ski with them next year!  Ken said C was a little fart and didn't do anything.  He didn't take his lesson.  He didn't listen.  C had a really busy week with his Great Auntie Deb, so I knew he was tired.  Ken agreed but was still a little annoyed.  But he said that they still all had a good day.

That's about all I have for an update right now.  I hope it made some sense.  Like I said, I feel pretty out of it an loopy right now.  Hope all is well with your families and lives.  We love you and are so thankful for all that you have done for our family.