Monday, April 29, 2013

The little things.

Today, I am on my own.  W and K are in school and C is having a play date at his little buddies house. So I did what all of you would have done... I slept in until noon, of course after I helped to get the kids off to school and C ready so Ken could drop him of at M's before he went to work.  He was so excited to go out and play with his little buddy.

I have really been struggling latley as he is my last babe, and he starts school in the fall.  This isn't what I had planned for my life.  Being to tired to do all the things that I wanted to do with him and K for that matter.  Being sick wasn't on my list of things to do.  I lost it the other day and sobbed to Ken, "This isn't how it is supposed to be.  It wasn't supposed to be like this.  But I guess this is exactly how it is supposed to be."  And I guess my job it to figure out how to muttle my way through it and make the most of it.

My tumor markers are up again, 174 this time.  I honestly don't have any drive in me to find the good part of this news. Like my Mom said, "How did you feel 5 minutes before you found out?"  "Fine, " I replied.  "And how do you feel 5mintues after finding out?"  "Physically the same." I said.  "Then don't let it bother you so much.  I know that is easy for me to say and not so easy for you to do." was Mom's answer, and she is right... but again, harder for me to do.

I have been back to processing, it seems like I am always processing... good and bad, but always on the go with the brain.  But I have found that I have been more patient and loving, and I watch more carefully, how my children laugh and fight.  How sweet they can be with one another and how they really do love eachother and do things for one another.  Makes me feel at tims that I am not a total dead loss.  I love their laughter and their freckled noses and their smelly bodies when they come in from outside and they need to shower.  I love their utter concern and care for me.  I love how they pray for me in every single prayer that ever escapes their lips.

Being on my own today I thought I could handle some music while I was cleaining up from the weekend, W's 9th Birthday!!!! 9  Can you believe it!!  I hope I am here for so many, many more.  I love watching them grow and change from year to year.  Every year whose ever birthday it is we sit down together and look at all their pictures from birth to current.  We laugh and I try not to cry, but I always do.  I just can't believe it goes so fast, but at the same time, being in the position I am in I want to fly through it so I don't miss anything.

Anyways, I guess listening to sentimental music wasn't the greatest idea, but at least I will have cried all my tears by the time everyone gets home and I can be happy mommy.  I always want to be happy mommy, but sometimes, she's just so sad.  This one song came on by Hilary Weeks, yes can you tell she is one of my favorites.  And it summed up exactly how I felt at the moment it came on.

"If I Only Had Today"

It seems like I've watched a million sunsets
And stared at a thousand full moons
Sometimes it feel like I've been here forever
And sometimes it all feels brand new

I could never count the heartbeats
From the day I was born until now
But not a single one goes unnoticed
By Him who breathes life in me somehow

But if ther were no more tomorrows
If I knew that I could not stay
I know how I'd spend every moment
If I only had today

I'd hold you and listen
And I'd let the dishes sit in the sink
I'd tell you I love you over and over
And for once I'd just let the phone ring  (So all of you who say "You never answer your phone!", sometimes I just want to be in the moment that I am in and not have to talk about anything else because I might be busy with my family.  But I still love you and will call you back... eventually!)
Then I'd remind you of forever
And how our love would never change
If I only had today
I'd wake up before the sun did
And I'd watch as you quietly sleep
I'd pray for time to move slowly
Knowing the moment won't keep

All the gifts that Heaven has given
Every blessing that's come my way
Wouldn't mean anything without you
So if I only had today
I'd hold you and listen
I'd memorize every detail of your face
I'd tell you I love you over and over
I wouldn't let excuses get in the way
Then I'd remind you of forever
And how our love would never change
If I only had today

There's no time like the present
Life doesn't come with any guarantees
The sun will set and time won't wait
So while I have today

I'll hold you and listen
I'll let the dishes sit in the sink
I'll tell you I love you over and over
For once I'll just let the phone ring
And I'll remind you of forever
And how our love will never change
Because I have today.

So as I was running around the house with an armful of shoes and boots from the little people that live here, I was thankful that I can put these little shoes away.  That I am here today, becasue I have this time, here and now.  That is my garuntee.  And I am blessed to have this moment.  And although I am not feeling the best from the chemo, I am here... to see, and love and live.

Tuesday, April 23, 2013

Finally, an update.

Again I apologize, I know it's been a while but we didn't have our computer upstairs for a few weeks... Ken later informed me that I was more than able to use the one in the basement... well, of course I didn't think of that!

I finished up my first round of chemo, it went pretty well until I stopped.  For the first two weeks on the chemo I felt pretty good.  Just kinda nauseated at times, but not too bad but I did get a mouth full of sores.  On my gums, tongue and a few down my throat.  It was pretty crappy and I told Ken I wasn't sure how I was supposed to keep going if this was how I was going to feel.  Ken asked the nurse here how many "rounds" of this chemo I do and she said until it stops working or she can't do it anymore.  Needless to say I was completely discouraged by this response because I totally felt like crap.  Sorry, the week that I have had off has been worse.  I have felt like barfing almost the entire week but gravol did  help with that.  And I have the gross chemo film in my mouth... that is enough to make one want to barf.  You seriously can only brush your teeth so many times in a day and then I am sure the toothpaste will be giving me the mouth sores.

Yesterday I had my blood work done.  It all came back good, hemoglobin, liver function, neutrophils etc...  We should have the tumor marker results by tomorrow - AND I AM PRAYING THAT THEY HAVE GONE DOWN!!!  We all are.

Dr told us that the drug combo that I am on is usually very effective.  Of course there are people that it doesn't work on, and then there are people that have had quite a long term success with this regime.  I hope I am the latter.  Dr adjusted my dose, down a little, so that I will be able to tolerate it a bit better.  They don't want me to have the mouth sores and such so that is good news, because I was honestly wondering how I was going to do it over and over again if I felt the way I did on the first three weeks.

We also discussed repeat scans and what will happen with that.  Dr told us that usually you don't to a repeat CT until three months AFTER your last dose of radiation.  So we are looking at June-ish for that.  We were told that sometimes after radiation, the tumors can actually get a little bigger with inflammation so you really do need to give it some time for everything to settle down.

Dr asked how I was coming off the Dex.  I said I was doing pretty well and told him the dose that I am down to.  He said that was good but I had to take it exactly how it is prescribed so that it is best for my body.  Ken did tell him that I have been  having some headaches which we were told is completely normal for 8-12 weeks after radiation...  Also, coming off the dex does create some of those problems, headaches, dizziness etc, that I have been experiencing and Ken, rightfully so being as I was so forthcoming with my symptoms last time, was just trying to make sure that what I have been feeling is normal.  I was pleasantly surprised that they symptoms are normal.  And they haven't been nearly as bad as they were at Christmas.  Just more of a pressure headache if I bend over or again, if I get tired.  And then if I am tired, and I haven't napped, then I do have the aura's and that sort of crap, 1,000 pound noggin... you know, normal stuff that everyone gets on a daily basis.

I have been sleeping a lot more these past few weeks.  But I chalk that up to chemo and just regular healing.  I am so thankful for the help that we have that affords me to be able to sleep most of the day... k, well it's not that bad.  But I have upped my hours in our bed!  By MYSELF!!! all you perv's out there!

On a totally different note, today I went on a bike ride... granted it was just around the block.  I told Ken we should to a test ride before we actually ventured out onto the real road.  I almost crashed 3 times before we even got out of the driveway.  Ken was laughing, but seriously told me to get off my bike and walk it off the driveway because he didn't want me to scratch his truck.  Nice hey!?  The downhill part was awesome... going up the hill back to our house was enough of a workout for me.  I didn't walk my bike up, mostly out of pride, and there was a guy outside fertilizing his grass and I didn't want him to think I was a loser...  my outfit gave me away in that regard.  I decided that the phrase "it's like riding a bike" wasn't really true.  It most certainly felt as awkward as my first kiss and it didn't help that Ken was totally making fun of me, although, I would have made fun of me if I could have done two things at once.  I would usually pride myself because of my ability to "multi task", even though apparently it has been proven (probably by a man - sorry guys!) that your brain can not actually do two things at the same time.  Ya, you probably can't deliver a baby and make a stir fry at the same time (gross, why would you do that), but I can talk on the phone and do something at the same time.... Ken can't.  Literally, can not do it.  So if I could ride my bike and make fun of myself, I would have done it, but I am not that talented... YET!
I am getting stronger.  Because you all care so much.  If I am down on the floor, I can actually get back up on my Bambi legs with minimal pushing with my hands in front of me.  I can also go up the stairs now without holding on.  Little victories are huge for me right now, and I count a lot of weird things as another goal that I have met.
I did go for another run a few weeks ago.  Ken was working out in the morning and before I left he said, "Just be careful ok."  Me in all my positivity said, "Why?  What do you think is going to happen to me?"  So in my head I am thinking stroke, heart attack, aneurysm... thanks for the morning vote of confidence... All to which he replied, "No.  Just be careful.  Don't fall down or anything."  "Oh.  Ok."  And I was on my way.  I warmed up, downhill with my music and proceeded to jog at "my spot", which is also down hill.  I was going along, feeling great and then my left foot felt like it had a little more freedom than my right.  Sure enough my shoelace was undone.  I was almost to "my spot" where I stopped running, because it goes up a huge arse hill, so I wanted to push myself just that little bit further.  Then I heard Ken, " careful..."  Was this what he was talking about.  I could picture myself stepping on my shoelace, and falling down.  First thought, how the heck am I supposed to get back up?  This was a few weeks ago when I was still pretty weak in the legs.  Luckily we live in Cranbrook and this particular route the sidewalks pretty high, so as long as no one was around, I could have rolled off the sidewalk and probably landed on my feet.  The other option if I did wipe out was to get onto all fours as I have grown accustomed to, and then get my rear in the air and push myself up and pray that there, once again, no one was around to see this weird, chubby, bald chick, arse up in the air, doing who knows what at 6:50am. 
I decided to take Ken's advice and be careful.  I stopped and did up my shoelace and double knotted the other one.  I was successful and made it home without road rash and a hurt ego... thanks to Ken??  ;)
I know that was a lot to take in.  Sorry for all of it.  But I thought I should let you know how things are going.  I will post when I get my tumor marker results.  Hope all is well with you all!!  Thanks for your continuous prayers and love.  You all mean so much to us... even if we don't know you or know you very well, you are important to us in our lives. 

Saturday, April 6, 2013

What's up now.

I know I don't need to apologize for my second last post, but I am sorry... it was pretty bad.  But I most certainly have my bad days.  I am "normal" in that regard.

This week, if I decide to focus on the bad, was totally filled with cancer crap.  Tuesday was a funeral for someone who passed away from cancer, Wednesday was my dr's appointment, Thursday, Ebert died of cancer (I know, silly but I swear there isn't a day that goes by!!), Friday we found out about two more young (in there 30's) that are battling with the disease again and for the first time.  Our prayers will be with them as I am sure theirs have been on our behalf.  So, honestly, I did focus on the bad a little, but I also tried to focus on the good, and the great and the blessings that I have.

I started chemo again on Wednesday.  I take 4 horse pills at 6 am.  Have to take them on an empty stomach or after a low fat meal.  So they are most effective I take them early.  Then I set my alarm and get up and eat, because I have to take my next set of chemo pills as close to 12 hours apart as I can.  Well, I don't know about you, but I don't eat at 7 and 7 , or 8 and 8.  The pharmacist said 10 hours is ok.  They are another 10 pills in total.  The same ones I have been on, but a much higher dose.  So far, so good.  I haven't really had any nausea, but I take gravol at the slightest onset because I don't want to feel sick.  I do chemo for two weeks on and one week off.  I have to be careful, just as I was before on chemo around sick people, and if I get a fever for more than an hour, I have to go to the hospital to have my counts checked for infection so I don't die of one.  We did that about 3 times last year, and every time I was fine, but you have to be so careful.

Asked the dr about scans and such, and he said we don't want to over scan.  We just wait and see if new symptoms arise and then we do a scan.  Seriously, I agree with the over scan thing, but it just seems like such a stupid way to treat cancer.  Let's just wait and see if and when it gets worse, then we'll tell you there's really nothing we can do because it's so far gone, and that's how we do it.  I hate cancer.

On the recovery front, I think I am still progressing forward.  I still, obviously, get tired very easily, I am doing the best I can with the kids to have as much patience with them as I possibly can.  Ken and the kids are my life and I need to treat them better than I treat anyone else... why is it that we are always quick to be cranky with the ones we feel we can get away with it, with?!  I have been trying to find the joy and happiness in the moments this week, and I can say that I have.  I have watched my kids with a deeper appreciation of their little selves.  And they are pretty darn cute!

We had a little situation this week, and our family is so darn lucky that I have a babysitter right now who can stay cool, calm and collected under pressure.

Mom and I were making pancakes for me and starting supper on Tuesday night.  Tuesday is our busy day of the week.  K was at dance and W and C were playing in the front yard.  I was telling Mom that I was a little nervous that C was out there under W's "care" and that they were in the front yard period.  She reassured me (so it's all her fault... KIDDING MOM!!!) that we have to let go of little things here and there and they are ok and we are right here.  She's right. 

A few moments later W is screaming his head off followed by C.  I ran to the garage where I knew they were coming in.  I honestly though C got hit by a car and I was just sick!!!!  SICK!!!!  W came rushing in, followed by C, who was holding his bloody little head.  He moved his hand and I freaked... There was a huge gaping hole in his head and you know how the head bleeds.  I came running into the kitchen, C, right behind me and I grabbed a paper towel and slapped it on his head.  W was screaming his head off and I was freaking, Mom yells, "SHUT UP!!!!"  So we did... luckily there was a voice of reason in the room!!  LOL  Seriously.  Mom scooped up C, I don't do crap like that, with hole in bodies and such... I can do blood and poo, but not stuff like that. 

We got W half calmed and outside.  He has asked if C was going to die.  Of course we told him no.  He felt so bad and I felt bad when he asked me if I was mad....  long pause, while actually thinking of the appropriate thing to say.... "No honey.  I'm not mad.  You just need to use your head."  In my head, "Of COURSE I'M MAD!  WHAT WERE YOU THINKING?  WHAT WAS I THIKNING LETTING YOU TWO PLAY OUTSIDE IN THE FRONT YARD TOGETHER?!" 

Mom told me to come into the house and pull the plug on the pancakes.  Done.  I thought she asked me to grab her keys, and I thought she said they were by the cupboard.  I was looking by all the cupboards but I couldn't find them anywhere.  I grabbed our purses and ran back outside frantically told her I couldn't find the keys.  "I have them right here."  Mom said as they dangled from her hand as she held C in her arms.  "Are you ok to drive?"  "Ya."  I said, "I can't hold him like that.  I don't do that type of stuff."  Nice Mom.

On the way to the hospital, C gazed up to gramma and sweetly asked, "Gramma, am I going to die?"  We both chuckled a little and said of course not.  I know W was relieved to hear the answer yet again that his little brother would live.  Mom also remembered that we had brussel sprouts on that I forgot to turn off so we called Ken who was on his way to pick up K from dance and asked him to run home and turn them off... we didn't need a fire while we were gone too!!

We dropped Mom and C off at the doors and she got in right away.  We "checked" in and then went in with Mom and C.  They wrapped a big bandage around his head and put some topical freezing on it to get ready for the needle freezing.  Then he had some medicine and we waited a bit longer.

This is what happened.  There was a PVC pipe under our trailer outside that Ken has started to make a bow and arrow with, but it didn't work out and ended up outside sitting under there.  W grabbed it and threw it to C like a "boomerang" and he missed catching it, so the end of it clipped him in the forehead, causing previously stated wound.

Ken and K showed up at the hospital and we all decided to wait with C.  Seriously, he is one tough kid.  He ONLY cried when he first came running into the house.  Not during freezing at all, not during stitches, not at all.  W cried WAY more than he did, but he felt really, really bad. 

When they took the gauze away to start the stitching you could see C's skull.  I didn't look as you can well imagine, and I though W was going to barf and K started to cry.  I'm sure the Dr's thought we were nuts for all staying.  Whatever. 

10 stitches later the little guy, and the rest of us were ready to go.  Moments like this make me feel like I'm alive and "normal".  I know this doesn't happen every day, but it does happen, and makes my family seem normal.

I am grateful that it wasn't worse than it was.  C is doing really well and it looks like it is healing up nicely.  One of the stitches pulled out the next morning when we were changing the dressing and he didn't even flinch.  Like I said, tough little fart!