Tres Mis...

So my loving husband decided to with hold some information from me over Christmas so I could enjoy the time.  Well, today I was slapped with a bit of reality that I wasn't quite ready for.  So here is the rest of the mess.

There are two enhancing lesions in the cerebellum, one located midline measuring 1.7 x 1.5 cm and another left side cerebellum measuring 2.22 x 2.2cm.  Surrounding vasogenic edema is present and mass effect on the fourth ventricle is present.  Meaning in my terms, there might be cancerous spots on the brain barrier as well, not just the one original spot we knew about.  I could care less that there is two, it really doesn't make a difference to me right now.  The edema could be because of the pressure from the two lesions and might just be fluid build up.  If this is the case then once the swelling goes down from the radiation the fluid should drain.  If not, I will need a shunt.  Oh well, already got a plastic line in my chest anyways, what's another one?!

If is not just due to the swelling and it is actually cancerous cells, then whole brain radiation would be suggested, but the crappy side to this is, we really only get to do it once, and if it doesn't work, then there is nothing else they can do for me radiation wise.

We are talking about possible starting up chemotherapy again after my brain has some time to heal and I have some time to get better, but we'll have to get all our ducks in a line.

The lymph node info was correct.  Has grown from 2.4 - 2.6 cms.  Looking on the bright side it has slowed down.  A new, small, right lymph node has shown up measuring 1.2cms.  We were told that most lymph nodes are about 1cm so we are only .2 over that, but still it would have been nice to not have it show up at all.  Right middle lobe medial segment nodule measures 2.0 cm diameter, stable.  No change.

A tiny right lower lobe lateral  bs (that's just what we are going to call it because neither you or I really care about real name of it is) micronodule measures 4mm in size.  That's new.  There are also other faint smaller ground-glass density micronodules in the right lower lobe lateral basal segment are also now visible.  I know, a lot of that is Greek, but whatever.  That is the report and just thought I would share.

Ken, because he had to and I totally understand why, asked how much time we would have if I chose to do nothing.  Best "guess", only a guess was 3-5 months.  BUT! we are NOT going to be doing nothing so that will not be happening.  But I understand he needs to ask the hard questions.  It is like a tragic accident, you want to look away, but you just can't stop yourself.

To find that friggin' sliver lining again - I will sum this up.  "There is no other lesion in brain parenchyma.  Gray-white matter differentiation is preserved.  No other abnormal enhancement is present.  No bone lesion in the skull is identified."  In regards to the chest, "No aggressive bone lesions is present."  Also good.  Abdomen and pelvis - "There is no suspicious hepatic lesion.  The adrenal glands are normal.  The kidney, spleen, pancreas and bowel are all within normal limits.  There is no ascites of adenopathy.  IUD is present in the anteverted uterus.  No bone pathology is present."  Some of that is just for a good old freakin' laugh.  At least the IUD has stood the test of time, in my anteverted uterus.  All of my blood work is still holding up fine and liver function is good.

I am just frustrated with all the hard decisions that we have to make again.  I knew we would but I was just more hopeful than I should have been.  I told Ken I feel so stupid for feeling so excited when I didn't actually have all the facts and now I just look dumb.  But I know where he was coming from.  He wanted me to have fun, he wanted me to laugh, he wanted me to enjoy and not worry.  He wanted me to have what I deserve.  And I love him for that, more than he will ever know.

Small miracles.

You may or may not know this about me.  Before going through what I have been going through, I was pretty much a Negative Nelly, glass half full or even a little less than half full, kind of depressed, well, I was on antidepressants so I guess I was depressed, and rather ungrateful sometimes for the stumbling blocks that I had to overcome.  I often felt miserable and sad and angry.  You would never really know it to look at me from the outside, we all know how to build great walls around us to keep us safe.

Yesterday some of my wonderful friends came rushing to our aid and cleaned my ABSOLUTELY disgusting house.  I am not kidding, it was gross.  You could have planted grass seeds in the dust, toilets were back to something akin to a horror movie, smears and smudges all over the mirrors, you could have had a meal from all the crumbs and food on the floor... well, a small one anyways, enough to take the hunger pang away.

Ken and I needed to go down to the states to "pick up Christmas" as I liked to call it.  It was waiting at the boarder.  Almost all of the women here that didn't have plans after cleaning our mess (work, getting ready for the holidays themselves, spending time with family - it's a really busy time of year and I can't even explain how much gratitude I felt for them coming to us in the first place), offered to take our kids so we could run down by ourselves and grab the stuff we needed to get.  I kinda had mixed feelings as I had already bawled my face off in the bed that morning as I snuggled our littlest guy, gazing and memorizing the already well know details of his face, looking at his "crazy baby hair" as we used to call it, I guess now it is crazy little guy hair.  He was wrapped up in me and me in him.  But, my heart still shattered at the thousands of thoughts that fill my mind at times about "MY" babies.  How I am supposed to be here to be their Mommy.  How although, they drive me bat crap crazy sometimes, I don't want to miss one single moment of it.  I was up, and ready, and showered with my game face on for them and Ken too, and I knew if it was just Ken and I driving down that our thoughts and feeling would be free to flow and wander.  Which easily equates to: more crying.  But I knew the kids would LOVE to play with their friends so we did leave them here.  They also had a really good time helping the girls clean the house.

The car ride was quite, and tear filled and needed, I guess.  Like we haven't had these freakin' stupid conversations 10,000 times before, it just needed to be done again.  I know my kids would be ok.  Their father is a pretty amazing man.   Honestly what I struggle with the most is knowing that my husband, a man who has loved me through thick and thin and thinner, will eventually fall head over heels in love with someone else.  AND, that is how it is supposed to be.  Sadly, we all have to move on and I truly believe that no one is meant to be alone.  But it is heart and gut wrenching to me to think of this.  To not have this entire post be depressing, because honestly the good part is coming, I guess that I have to look at it as gaining a sister wife.  And Ken said to me, "Honey.  I want to believe that you will help me to find her.  The perfect women to mother "our" children.  One that if I died, I wouldn't have any hesitations leaving our kids too.  And that would be a really hard thing for me to do.  I am not trying to be a jerk, but it would be really  hard.  So I need to think that you would help pick her out for me."  Insert EVIL, cRaZy, laugh!!!!!!  Oh, kidding.  Of course I want her to be right for the job at hand.  It would not be an easy one and I know I would love her for all the sacrifices she is making to love our broken little family.  That it was meant to be like this.

On the way home I was a little angry and I told Ken that I was mad at myself for pissing (pardon the French) my life away.  "WHAT are you talking about?" he said, rather confused.  I was angry for being so selfish and stupid before about being "overwhelmed", "annoyed", "miserable", "cranky", "tired", "having a PROBLEM with the kids or Ken."  I was just mad.  Hind sight is always 20/20 and if I knew then what I know now, my life and choices about the way I react to most situations would have been completely different.  But I guess that it why we are here.  To learn and grow!

I spent two and a half hours on the phone the night before with one of my closest friends, LH.  Man I have learned so much from her.  She is such a blessing in my life!  I can't even begin to explain it!  She is already living my worst nightmare, and although she has her down right crappy moments, she still finds those times to smile, so I feel safe talking to her, and reassured when I talk to her.  Anyways, she is reading a book about Grieving.  She was telling me about a lady in the book who explained that "I now know, what a PROBLEM is."  Ummmm, this is quote by Geneva and Arnold so don't take if word for word ok!  "The rest of the things in life that [she] had experienced, were inconveniences."  How true.  It just made me realize a lot.  This situation that we are in is an actual problem... one I still believe can be solved, so I am not surrendering!  But it still made me reflect on my bad behavior's over the past years and regret the way that I have acted.  Remember though, I am still learning and I am not done yet!!

We then started talking about getting the rest of the results form the CT.  I told Ken I wasn't really up for anymore bad news when he made a rather funny point that brought a huge smile to my face and even a laugh to cross my lips.  He said, "Babe.  You have already been told you are dying.  That is like someone saying to us, 'Ken and Geneva, before you get home you are going to get in a car accident and die.  After you die, the car is going to blow up.'  Hon!  Who cares, we'll already be dead!"  (Raised eyebrows and a shrug, he's right!)

Well, we did call our GP to get the rest of the details from the CT.  Are you ready for the miracle?  (Now you can insert tears if you like, I know I sure did)  The miracle that I have been praying for all along, the miracle that showed me that ALL OF OUR PRAYERS have been heard all along... and that I have not been forgotten?  Well, here it is.  I wanted to type it up for you last night but I was feeling so sick and exhausted from everything and only getting two hours of sleep the night before that I just didn't have it in me, but my heart was bursting to thank you all and share it with you!  I know I know, shut up and get on with it!

The rather rapidly growing lymph node in my carina has only grown from 2.3cms, to 2.6cms in the past 4.5 months.  AND, the lung nodule is actually STABLE!!!  Did you hear that!  No growth in the past few months.  Still 19 mm's!!  AND no new lesions were seen anywhere else in my chest or abdomen either!!  Ya, I realize that this still isn't best case, but I have said over and over and OVER again that I would take stability!  In a heart beat I would.  At least I know that everything that I have been doing is not for not.  The hard work that I have been putting in is being paid off in some major ways!  It gave me so much fight and drive!  I can't even explain it to you.  And my tumor markers actually stayed the same, at 61, just like they were last month.  They have been going up and up slowly ever since April.

I am not an idiot, even though said Arnold make me feel like one sometimes (but at least I can joke about the bugger now that I know what is going on); I can get up and do whatever it takes, to give me however long I can have in "my" life.  I know it is not going to be easy.  In our Church there is a picture of the Savior.  He is in a white robe in the Garden of Gethsemane.  And the caption underneath it says, "I never said it would be easy, I only said it would be worth it."  How true these words ring.

 

"The Atonement of Christ began in the Garden of Gethsemane. Here Christ began to take upon Himself the sins and infirmities of the world. Even He was astonished at the suffering which overtook Him when this process began. He had to bear this burden alone. He suffered the consequences of our sins, but He also suffered every sickness and pain possible in this life. He felt all the consequences of mortality, even those which do not result from sin. He did this in order to be able to succor us and comfort us. There is no trial we can be called upon to bear which He does not understand."

 

And I am thankful, beyond words, measure, understanding even, for the love that I feel from my Heavenly Father and our Savior.  I wasn't easy for them to accomplish what they did for you and for me.  And I can honestly say, now that I am a parent and know of the love that you have for your children, that His heart breaks when mine breaks, and all He wants to do is pick me up and make it better for me.  But we are here to learn and grow and teach and love.  Just like our parents let us do when we were kids, and just like I will have to let my children do one day.  But I will always be there for them, cheering them on from the sidelines and dusting them off as often as they will allow.  And I know that the same is being done for me.

Have a Merry Christmas!  I know I will and I will rejoice for the ultimate gift that has been given.

The Plot Thickens...

I hate to do this late at night, I wanted to be inspirational and uplifting, but I am exhausted and the house is quiet - and so I write.

I have had a really bad headache for the past few weeks.  I experienced a similar headache in September but just thought that I was over-reacting to life.  I didn't want to say anything to Ken or anyone else because I didn't want them to worry or freak out... we have done absolutely enough of that this year.

I have also felt that I have been loosing my balance here and there, and it was progressively getting worse.  I felt like I wasn't really inside my head and I felt a little foggy.  My periods stopped... again and I was getting hot flashes.  Ya, menopause twice!  I am banking on, "third times a charm". 

Finally on Sunday I caved and told Ken how I was feeling.  Monday morning we got in to see our GP.  And we set things up for a full head, chest and abdomen CT in January... we didn't want to know anything before Christmas anyways.

Monday my headache took a turn for the worse.  It was so much more than anything that I had ever experienced before.  Then I started grilling anyone I knew about migraines.  It had to be migraines and STRESS!!!!  But the dizziness didn't really fit anywhere into the equation.  Whenever I bent over, pardon me, but, yelled (I am sure you do it too once in a while!!) or did a few other things it literally felt like the base of my skull was going to snap in half or else my head was going to explode out of my forehead.  It was awful.  But to sit up straight and do my daily tasks, no pain at all.

This morning when I woke up, hopeful that it was getting better, I realized it wasn't so Ken and I decided to head to the hospital.  We brought C with us - he never wants to be away from me and that is fine.  That was the gift I got from being away from him for 6 weeks last year, he became super attached.  Don't get me wrong, but it is not an ideal situation for a pap or "C" talk.... well, quite a few things actually. 

But we did have to have a "C" talk with our little guy there.  The Dr said it was totally up to us if we wanted the exam done or not.  He said the only good part of having it done and knowing if it wasn't so great was that he could give me drugs to help me feel better.  "Light Bulb"!  Have you seen Despicable Me?  One of MY faves!!  Ya, I was in.  Ken said, "Well babe, as far as you are concerned it is already there anyways so lets just find out." 

I asked Ken after to take C and drop him off somewhere.  I didn't want him anywhere near us when we got the results.  While Ken was out, there was a Code Red (what is that BTW??) to the Psych ward and literally the whole building was on lock down.

I was laying in the bed, looking up at the netting on the top of the sheet wall - whatever it's called - and thinking, (ready for my silver lining) "I am so blessed to not have to be alone."  Yes, at that exact moment I was physically by myself, but I knew my husband was just on the other side of the wall, waiting for me.  I thought of all "those" people who wait in beds like this, for results like mine, and don't have anyone there with them to hold their hand or tell them, "It's going to be ok.  We'll get through this together."  I was also very thank for an experience that I had the day before with my little man.

He wanted to play a computer game and I set it up for him.  I never really understood what, but something in it scared him.  We had to run out to do some last minute Christmas shopping so I had asked him to go and get into the car.  He did but then he came back in, said he was scared, and then said, "Well actually Mommy, I justh needed you to do up my jacket."  As I was zipping up his coat, I touched my finger to his little nose and said, "Buddy, it ok if you are afraid.  I am your Mommy and I am here to keep you safe and let you know that it is going to be ok."  He was fine with that answer and we hugged and got into the SUV together.

HOWEVER, promptly after I said this, the same feeling came over me.  I felt my Heavenly Father say to me, "Geneva, I know you are afraid.  But it's ok.  I am your Father and I am here to keep you safe and let you know that it's going to be ok."  I can't tell you all of the experiences that I have had over the past few years, but I can tell you that I know that He lives!  I know that He loves me, and you!  I know He knows me better than I know myself and I know He is here for me when I am afraid.  And when I am living my life aligned with the way that God would want for me, I literally do not have fear!  I know that might be hard to understand, but it's true!

Ok... back to the thickening part... I also thought of this situation as I was lying on this bed waiting for Ken to be able to come back in.  I felt peace though, knowing that I was cared for.

One of the nurses came and took me in for my CT.  Again, waiting alone, like I have so many, many other times before.  This time however, I was making everyone around me laugh... I was being Debbie D.  Whaaa, waaaaaa.  Sorry guys, you just GOTTA laugh sometimes.

After the CT was over, I went back to my "room" let's say, and my husband was trying to have a nap on my bed.  Well, I kicked Goldie-not-so-locks out and then we played Monopoly on the iPad.  Best time waster ever.

Then Dr parted the sheet and I knew the exact moment I saw his face, what he was about to deliver.  "Geneva.  I am really sorry.  It's not good news.  You have a mass at the base of your cerebellum that it 1.5-2.0cm's in size.  That is what is causing the pressure, pain and dizziness."  And just like that, our world changed, yet again, in an instant.

He was very positive, reassuring us that he is NOT a specialist, but that there are a few things that we will most likely be able to do.  Surgery - well, maybe not.  He said it is kind of at a tricky spot so if they did do surgery then I have some permanent damage there and even blindness.

Chemo - yes, likely chemo would be an option.

Radiation - well, they would most likely do a trial run with it and see if the tumor would respond to it.  There is absolutely no point in doing it if I am going to be puking my guts out for weeks to not have Arnold (ya, the name Ken gave it, you know, "It's not a tumor..."  And yes, I did freakin' laugh!) shrink any.

But, our shiny, bright new year will be full of visits with specialists and such so we will have more information by then.

I told Ken that I still believe in Reno with all my heart.  Dr. F and his team, are some of the most amazing people I have ever known.  And, who doesn't love an oncologist who's been in the buiz for 40 years.  I think the man knows what he is doing.  I feel amazing doing this treatment, and I have the whole time.  Part of the problem is the cost of doing alternative treatments (PLEASE KNOW I DIDN'T SAY THIS FROM A PITTY PARTY STAND POINT!  You have all done so much for us, it is just that we really need to reasses our situation.  Sadly, we don't have all the money in the world and we are young so we do have to be careful.  We have already spent so much.  If we weren't able to continue with this treatment, it would not be because I don't think it works.)  So I said to Ken, "Before we make any decisions, I want every body's cards on the table.  Dr. Oncologist from Kelowna, Cranbrook Dr in charge of the unit here, Dr. F and his team, and Dr. Radiatino Oncologist from Kelowna.  I want to know what everyone thinks I should be doing and then.... we pray."

I would like to mention here quickly that I have no regrets.  I don't want to hear anyone or have anyone give me the "I told you so" look cause I will smack it off your face so quickly you won't know where it came from.  O.u.r decision to do treatments from the States did not come lightly.  There was much fasting and prayer that went into that decision.  I did express this concern to my Mommy who said, "Honey, if nothing else, Dr. F's treatments built your body back up healthy and strong, so whatever you choose to do next, you will be ready for."  Love that woman!!!!

I also want to mention that when Ken and I were talking to our GP, said GP said... you got that??  "You guys might not like me that much at times, but I will be honest with you.  If you are going to do hardcore treatments for 3 months and it might give you 3 months, then I would encourage you to keep doing what you are doing and feel good for the remaining time you have left.  If you are going to do treatments for 3 months and it will give you a year, I would strongly recommend you do it.  AND if at anytime you are doing treatments to get the "year" or whatever it is and it is not looking so good, I will tell you at that time."  She also pointed out, this we already knew, that I could be healthy and strong while doing this, but I could get pneumonia and that could kill me over the chemo.  It happens often.  And we already know that my white count is fragile so we need to be careful in what we choose to do.  So there will be much more thought and prayer that goes into this decision as well.

To help with the swelling which is causing part of the pain, I was given Dexamethasone... again.  This fiery little ball of crap helped me to gain 18 pounds in like 6 weeks last year...  Oh, did I forget to mention that I have finally lost 65 pounds, so of course the first comment I made was, "This is going to make me fat again."  ER Dr laughed.  I am on a low-ish dose for now, if it isn't really helping then I will up it.  I guess at least this time I might only go from 129.2lbs (ya, it was a huge feat for me so it's important right now ok!  Think I am vain, whatever.) to 149.2lbs.  That is better than 173-193lbs like last time!

This part is VERY important.  Again, we are not telling the kids until we have made some decisions.  And we are most certainly not going to dwell on the dying part.  Yes, we are going to talk about it a little now, and more when the time draws closer... and for those of you who may not have figured it out yet, I am not throwing in the towel.  I still believe in miracles big or small.  I have had many in my life I believe.  But we can't tell the kids now when we don't really have all that much info to give them and that isn't fair.  I think Ken didn't really want to say anything until I was close to passing gas, I mean, away, but I said, "If we do things a little more aggressively again my hair is probably going to fall out.  I am going to be sick again.  Those sorts of things you can't hide from your kids."

And, as hard and sad as it is going to be (well, we are all going to die eventually, right?  So we are going to have to bring it up one day, hopefully in the distant future), I need to know that we have prepared them well.  I need them to believe in the Plan of Salvation.  That I am their Mommy for now, and for all eternity!  And that I will still be here for them.  In the big moments, and small.  And that God will comfort them when their little hearts are breaking, whether Himself, or by those of you who love us and love them.  And that hopefully I will be able to comfort them and they will feel it from me.  K, that, was totally depressing, but today has been some of our lowest lows I think.  But we are still hanging on!

Now that we have pooped a little on your Christmas, I hope you will forgive us.  I hope you will remember why we celebrate Christmas.  I hope you will melt in the joy of your child's eyes this season.  That you will find comfort in the peace that has always been available to us all.  I hope you will love your families a little bit more and worry a whole lot less.

I love you.  We love you!  We need you and your prayers and again, we thank you for every moment you think of us and pray for us and love us from where ever you are!  We need you.  I need you.

May our Father in Heaven bless you this season and in the year to come!

My Christmas Wish.

Without getting into all the depressing details of what I would really love for Christmas, I will ask for one small gift from you.

This is the gift of being fearless.  Be fearless while living your authentic life.  Love who you are and as many moments as you can while going through this life.

Be fearless with me.  I need now, more than ever, for people to believe in me as much as I believe in me.  I need you to tell me positive things, I need you to keep me going, I/we need your prayers and your faith in us.  I was talking to a dear friend.  This is how our conversation went.

D - " I know this has been so hard on you, but sweetie, I feel so positive that you're going to be around for decades to come. "

 

Me - "Me too D. From the depths of my soul I believe that! Have felt that way from the beginning, but sometimes I forget to hold onto that little voice, telling me it's going to be ok and I am going to be here."

 

D - "Then let me and all the others who love you be that little voice when you forget. :)"

 

Me - "Instant bawling. Thanks D.  Thank you thank you thank you.

Not for the crying part, but being my little wellness warrior with me!"

 

I NEED you all to be my wellness warrior's with me.  I need your encouragement, I need your "get up and go" attitudes, I need your prayers.  I can honestly say that I don't know what I would have done if I had to face this situation alone.  It is hard enough at times to face it with all of you backing us!  But I draw so much strength from all of your love and continuous support.

 

This is my Christmas wish.  That you will continue to push us along in this exhausting journey that we are currently on.  I know that my Father in Heaven loves me and my family, and you and yours.  I know that the greatest gift of Christmas was our Savior.  I know that He loved us so much that He endured and conquered death.  I know that he blesses our lives each and every day, even if it just by the gift of another day.  Those kinds of gifts are priceless.

 

And to wrap up with a "Thank You".  A big huge one, from the bottom of my toes.  I hope your Christmas is amazing and spirit filled.  That you will enjoy the love and laughter that is truly a blessing bestowed upon us all... even if it is just in moments.

Inspiration.

Where does it come from?  Can someone give it to us?  Obviously, that is why I decided to write today instead of putting if off, over and over again.

The definition of inspiration is:

in·spi·ra·tion

/ˌinspəˈrāSHən/

Noun The process of being mentally stimulated to do or feel something, esp. to do something creative: "flashes of inspiration". The quality of having been so stimulated, esp. when evident in something: "a moment of inspiration in an otherwise dull display".   One of my closest friends, I have mentioned her here before, husband passed away this past March.  She has finally!! (YAY!) started a blog.  I find I don't usually cry enough in a day so now I can read hers and laugh and cry some more.  And you know what?  That is healing to me.  That I can look at someone else's life and not always be consumed by what is or isn't happening in mine.   I am already having a pretty emotional day as it is, trying to pin point my feelings on what I am experiencing.  I have literally been working my arse off, trying to come out on top with this whole cancer bs.  Although there are many things to be thankful for, little miracles and many blessings that come our way, I feel as though the float away on the breeze and I am desperately grasping at their wispy ends with my fingertips as they finally slip through...  And then... darkness sets in.  I am finally to the point where I am reaching out for help.  I need some tools to help me through these times as I know they are not the place to focus.  And although everyone says it, and also everyone that says it also follows it up with a disclaimer like "I know it's easy for me to say and harder for you to do", I need to keep a positive attitude and focus.  THAT! my friends... is really hard to do.   So I was inspired this morning from reading one of my besties blog post.  Let me share it with you.  I hope she doesn't mind.   "Sometimes I am down right in the dumps, barely keeping my nose above water. Other times I’m “good enough”.   And other times I feel content and even “happy”.  Notice I use the word “sometimes” instead of “somedays”.... my days are like a roller coaster. Rather than speaking in days, I need to speak in moments as I often feel all these feelings and emotions in one day. For me there are no “happy days” YET.... but I do have lots of “Happy times and moments”. I look forward with hope knowing that I will one day have “Happy Days”... not just “happy moments”."    As I read this, tears streamed down my cheeks.  This too is my life.  And I truly feel everything in a day from darkness and despair, to an overwhelming feeling of the ability to overcome and bright hope and  unshakable faith.  But, I too am on this roller coaster.  And it sucks.  But I am already on it so I just have to "buckle up and hang on tight until it's over" as Ken so perfectly put it.   Although what L and I are experiencing are totally different situations, our feelings and emotions are much the same.  That is why, I TRULY BELIEVE, part of the reason why we experience trials and afflictions, not only so that we can learn, but we are able to lift the shoulders of our friends and loved ones, and honestly, perfect strangers, meet their eyes with a smile and maybe a tear and say, "I know it's hard.  I have been on this road too.  But don't give up.  Our Father in Heaven loves you so very much and he will never leave you.  I will be here for you, to laugh with and cry with until you blow snot bubbles out of your nose.  It's ok.  I love you."  (Wish I could take my own advice, although this is very therapeutic for me!  Sorry if it is causing you to drain your bodily fluids out of your orifices.)   While we were in Reno I started to frantically read a book that I had picked up in April.  I literally could not put it down.  I read from page 1 to 85 (I am no scholar, it's a quick, easy and great ready and I have pretty much turned the pages tips over on every page, finding some valuable information within it.  But I have thought of this certain part, over and over and over again, as I come across people who feel badly "complaining" to me, and just for the record, before my life had a somewhat of a major trial, I too "complained" about what I was going through.  And I don't view it as complaining, honestly, I just see it as us talking through our struggles in life, and my friend, you can do that with anyone!  Now let me show you this life changing moment I had.  This book is called "In Trying Time Just Keep Trying" by Merrilee Boyack.    She says on page 17 (So profound for the beginning of the book I thought), "...Our individual and personal challenges loom large and consume our attention and our lives while we are going through them.  Yet, it's important that we keep some long-term perspective.   On the one hand, you may think, "Oh, man, my life is so much more difficult than his (or hers)!"  It's an ironic fact that we can experience pride even when comparing our trials and tribulations!  I've done it though; when I encounter women who had a lumpectomy, I think, "Oh, that would have been so much easier!"  It is tempting to be competitive even in the midst of our tests.   On the other hand, you may be told of someone with truly egregious trials, and you may think, "Well, at least I don't have it that bad.  I shouldn't complain."  But that viewpoint isn't right either.   It is useless to compare our trials with others.  For each of us, the things we are facing right now are real and significant.  Comparing them to others neither makes our trial bigger nor smaller than they really are.  Each of us has our own customized testing plan, designed to prove us and reveal to us what we're made of."   Did you read that last paragraph?  It is key and I believe it with all my heart.  Regardless of how "big" or "small" what you are experiencing is, it is real and significant to you!    I don't know what my Heavenly Father's plan for me is.  All I know is one day I will see what I am really made of and the spirit within me will shine without reservation.  I just need to keep living moment to moment, day to day and finding those times to smile and even laugh out loud and remember that I am not alone.  The people closest to me may not be experiencing exactly what I am going through, but I know that they can help me through my difficult times with the experiences that they have had or are having in their lives.  And I am thankful for that.

Thermo Results are IN!

O.K.  It is hard to tell exactly what is happening right now because this scan is pretty much a baseline scan... being as it is my first.  There are some spots of inflammation in through my glands and such and by my thyroid.  Some of the inflammation in the right side of my thyroid may be due to the lymph node that is an issue.  But the Dr. wasn't very concerned at this point with the findings.  She did suggest that I have some blood work done to see if my thyroid is function properly and also check some other things with blood work. 

As for my lung, I didn't realize that the thermography only read a few mm's into the skin (I was hoping it was deeper).  BUT they can tell by certain patterns that are made on the surface as to what may be happening underneath.  So there really isn't any info on that.

My right breast does have a few areas that need to be watched and the Dr here did suggest that I follow that up with ultrasound.  But again, this is just a baseline so nothing to be freaked out about.  And that, my friends, is the amazing thing about thermography, it can detect a spot that could potentially be a problem, years and years before it ever develops into anything serious.  Also my left chest wall showed hot spots all along my scar, but that can be due to everything that has happened - radiation and surgery.  She said it is very common.

I will see what I can do to get some pic's up on here.  I can't figure it out right now though.

I have sent the info to my Oncologist in Reno and I am sure if  he is alarmed by anything, he will notify me.  Until that time, I am just going to keep on keeping on, doing chemo, eating well and drinking my grass everyday.  I thank you for all your prayers!!!  Really.  And if anything changes I will let you know.

Sorry it's so quick, but I have to make the kids some supper and take my next pill. 

Lots of things to blog about...

I have thought of many thing to blog about over the past little while.  Something will pop up or into my mind and I think, "Hey, that would be a good blog post."  But I never get around to doing it.  And to be honest, I have been trying to eliminate as much stuff as possible out of my life that reminds me of cancer... sadly this blog is one of them, but I won't ditch it.  That is why the hiatus though.

I had also been wearing my "pink" bracelet for a long, long time.  But then I started to dislike what it represented.  On the flip side, I also loved what it meant to me.  What I didn't like was the fact that every time I stuck my right hand out, I saw it and it reminded me that I am the girl with cancer.  I am young and I should never have even had to wear this bracelet, unless it was for supporting another.  Support.  That is why I loved it.  It made me think of all those people who donated money to us and wore and still wear theirs.  All those people who love me and believe in me... I felt guilty taking it off because of them.  Eventually I decided it was ok for me to put it away. 

Ken and one of my closest friends had a bit of an intervention with me too one day.  I have been reading my brains out for the past year and a bit.  Ken told me it was time to stop.  No more reading about cancer, nutrition, pills or anything else.  It was time to make a total 180 in my focus.  T, my friend asked me why I was so consumed with reading so much.  I said, "Honestly, I am terrified of possibly missing something that could potentially save my life."  It was that easy.  But at the same time, I think it was killing me.

Ken told me that I need to have faith in our Heavenly Father and faith in my Dr.  The decision that I came to, to go to Reno did not come lightly or easily.  There was MUCH fasting and prayer that went into making that choice.  I needed to focus on Dr. F's abilities and his way of doing things instead of slowly slipping down this slope into despair.

Since then, like I said, I have tried to abandon as much "C" as I can.  I honestly feel better.  I am happier.  I feel hope and like my life is going to be just fine.

So - onto results!  There really aren't any yet.  I don't get to talk to the Dr in Calgary until the 15th of November.  But I am ok with that.  She has been really busy and can't get back to me until then.

I did get my tumor markers back from the end of October and they have gone up again.  Last month they were 40, this month they were 43.  Ken (love this man!!) told me, "Hey, look on the bright side, they didn't go up 4 like they have been.  And how do you feel?"  I replied, "Other than this cold, I feel great!"  "Then screw the numbers!!" he said.  Well put.  I don't want to be stupid and not be proactive, but I also don't need to plan my funeral at the same time.

I have started another, yes, another new chemo drug.  This one is Xeloda.  I am taking a double dose of what the recommended dose is, but I think my body does ok with this crap.  It is in pill form.  I do one week on and one week off, one week on and one week off, probably for 6 cycles - so maybe until April 2013.  The sharty thing is, it is very expensive... I mean, very.  But we have been blessed again (thank you!!!!) and we are doing.  I felt pretty good the whole time, just a little tired yesterday, but it was my last day and I am off for a week.  It's side affects are very dry hands and feet, rashes, one of my friends in CA ended up with this, and hair loss.  All of my friends from Reno that were taking this drug still kept their hair so I am thinking mine will be just fine.

I am still taking my supplements like a mad fool, eating really, really well, I think my insides MUST be green by now and have dropped 50 pounds since this time last year (60 in total).  I truly do feel great!

I am now working really hard on trying to make sure that my thoughts align with what I want most in life.  A long and healthy life.  I picture me and my life in the future, with my husband, kids, in the home we would love to build...  That is what keeps me going.  Like I would ever stop!  But there have been days where I can see why people give up and think there is no end and no hope.  BUT, I am not living from there anymore! 

In keeping with this mind set, I don't think I am going to rush in for my next CT which is available to me now.  Do I really need to know if it has grown/shrunk and by how many mm's??  I am not going to lie, I do want to know, but at the same time, I want to enjoy this amazing time of year without being in a bad head space... again. 

Ken and I have talked and decided that once we get the results from the thermography and Dr. F has had a chance to see them, we will make a decision from there.  Until then, I am living my life as normally as I can, with the few hiccups of cancer sprinkled here and there.  I am not defined by this illness.  I am still Geneva, with a bright future and so much to offer... after a few quick naps and some more chemo.  :)

Not your typical day yesterday.

I am a pretty blessed girl and I have some people who really love me.  A few of which have donated their garden produce to me to juice at my will.  It has saved us a little bit of money and I am so thankful for that.

When I was home for Thanksgiving, we raided my Auntie E's garden of kale, broccoli and parsley.  Another very special woman, A, gave us a bag full of chard.  When we got home, I got to juicing.  I juiced two huge garbage bags of kale, did up the broccoli and parsley and then the chard.  The juicing guru's would say it's a no-no to freeze your juice, but like I read in one book, "It is still better than your friend who reaches for the coffee or diet pop in the afternoon."  I am sticking with that theory.

Just because of where we live I was concerned as to how expensive juicing would become through the winter months.  Not only that, but the organic produce starts to look a little shotty.  So I am thankful that I got a bit of a supply when there isn't really anything in the store and when it gets too pricey!

 

C and I juiced for 7 hours between the usual juicing and cleaning.  We bagged it all and then I froze it in thing layers so it will thaw quickly.  I know I also juiced some caterpillars, spiders and grass.  I am tying not to think of that part though, it is hard enough to drink it all on its own let-a-lone thinking of what is/could be in it!

The highly anticiapted scan!

My next scan is coming up on October 17th.  I would be lying if I said I wasn't worried about it or thinking about it all the time, but I am not that freaked out.  I am sure once it is over with I will be because I always seem to be calm until after the scan and then I freak out until results are in.

This is the thermography scan that I am heading in for.  The one without all of the radiation that tags along with most scans any of us have.  Like I said in the past, I am thankful for that.

I know that many of you pray for us and I would love it if you would continue to do so!  It has gotten us through so much.  I don't know what I would have done without it all.  Prayer is such a powerful and amazing tool, available to us in an instant.  I promise I will keep you posted as to what is going on with all of that!

A day in the life of... Me!

People often wonder what I am doing, health wise, to keep me healthy.  I seem to get asked this quite a bit so I thought I would let you all know what a usual day entails.

I love working out, but sadly, I don't have time for that right now.  I know that it would be very healthy for me to do it, but I honestly don't have the time.  Almost my entire morning is filled with my routine, and I would have to get up at 5:30am to fit in a workout... not doing that right now!

I have recently switched up my daily grind.  I was finding that I was literally not ready to go anywhere or do anything until after lunch.

6:00am - Get up and get my detox mat ready.  Put the heat setting to the max and wait to feel the burn!

6:30am - Feeling the burn.  I am literally dripping with sweat by this point, the only thing out of my blankets if my head.  I do this for another 30 minutes. 

While I am on my detox mat I usually try to say my prayers and then I thank Heavenly Father for everything that I am thankful for... everything!!  For the last little bit of time on my mat I visualize my body sweating out the toxic cancer cells and new, strong, healthy cells flooding in. 

7:00am - Get off my mat and get into the shower to wash all of the toxins off my body.

7:10am - Get out of the shower, dry off, get my hair did, and take my first round of drops and such.

7:20am - Wake up my babes for school!  Sometimes they surprise me and they are already up and at 'em!

7:25am - Make breakfast and start lunches, then take a moment to go and brush my teeth.  My "drops" have to be taken 10 minutes before or after brushing to be the most effective.

7:30am - 8:15am  Get the kids to finish eating, brush their teeth, hair and get their lunches into their backpacks.  Last call for a poo break at home (I have a certain child that hates pooing at school and I don't blame them!) prayers if we have time, hugs and kisses and out the door.

8:20am - Get the little one to finish up his supper and get ready for the day. 

LET THE JUICING BEGIN!!!!

8:30am - Start washing, cutting and peeling all of the produce I am going to consume for the day.  It is a lot and it takes me a while to do it.  I have also been enlightened to the fact that I can juice for the day, instead of doing it three times a day.  Every time I juice and clean it all up, I am looking at 45 minutes to an hour.

Juice it all, pour it to the tippy top of  3 8oz mason jars, lid them and put them in the fridge.  Drink what is left over and then clean it all up.

My 4 year old loves to help me juice!  All the kids do, but they never really get the opportunity unless they are home from school or it is the weekend.  It is a bit of a fun thing we can do together.

9:30am - Clean and tidy up the kitchen from breakfast and juicing.

10:00am - Wander through the house and tidy up whatever needs to be done.  Start laundry or clean if it is a cleaning day... if I feel like cleaning.  Laundry has to get done, the bathrooms can go at least two weeks! ;)

10:30 - 11:00am - Story time or finally time to do whatever my little guy wants to do.  Something quick and fun before we get lunch on the go!

After lunch we just hang out, go out or do whatever we want until the kids get home from school.  Then I usually send them out to play, while the weather is still great, while I get supper started.

The rest of the night we do normal family things like read our scriptures and nicely ask the kids to go to bed when it is time.... that usually turns to raised voices, sometimes yelling and then quiet. 

9:00 - 9:30pm - Ken and I honestly, head to bed and read or watch a bit of tv then it is lights out for us.  Then the next day - repeat!

So if we aren't answering the phone, or can't be ready before noon, there is a really good reason.

Nothing like a good old update.

Since I have last posted - A LOT has happened.  Not so much physically, but complete and mental turmoil.  This August was probably one of the worst months I have ever experienced in my entire life.  The CT results really threw me for a loop, like a major head bender.  And it took me the whole month to pull myself out of it.  It was dark and awful.  I seriously couldn't have found a glimmer of hope if it slapped me right between the eyes.  Well, there were moments of joy and hope, but they were scattered throughout the day in little shards.  The gloom was present most of the time.

I was not in a good place and I was sick of feeling this way.  It is completely exhausting.  I mean that.  Literally draining.  And I know it was hard on Ken to have a constant rain cloud wandering around the house.

Then my GG came to the rescue.  She sent me two amazing books.  One is called, "Dying to Be Me" by Anita Moorjani, and the other is "Wishes Fulfilled" by Dr. Wayne Dyre.  I read Anita's book in two days.  She is a stage 4 cancer survivor who had a near death experience (NDE) after cancer had ravaged her body for four years.  She went into a coma and had this amazing NDE, came back from it and completely healed within 5 weeks... like cancer FREE in 5 weeks.  It was a major eye opener for me. 

Dr. Dyer's book is about self manifesting the things which we want.  I am reading his book V.E.R.Y. slowly but I am learning so much about myself.  They are both great books and like I said, came just in the nick of time.  I feel like I am back on my feet again.

In the midst of these two books, I had some blood work done.  A routine CBC which came back normal so I can continue on with the chemo.  And then my tumor markers were done.  A normal range (in Canadian Labs) is between 0 and 32.  A normal range in the US is between 0-38.  In April my tumor markers were at 15.  I just had them done at the end of August and they were 36.  Needless to say, discouragement set in quickly once again.

But, over the weekend, with the help of a very knowledgeable friend and Ken, I was honestly ok with it all.  Like Ken said to me, "Maybe we have to rely less and less on the medical side of things, and more on the Lord."  I still want to be in the know, but I am not letting these numbers and such get me down like they used to.  I am going by how I feel.  And you know what?  I feel good!  I feel better than I have felt in years (as I have said before).  I think it is healthier for me to be in this mind frame instead of the other.  I know I feel a lot happier and find a lot more moments to laugh at and cherish.

I spoke to Dr. F today on the phone.  He is such an amazing man.  I had asked why my makers could be up and he said it could be because of cell die off (more cancerous cells dying so there is more of them in the blood stream).  I am choosing to believe this theory.  After all, where is negative going to get me.  No where but miserable and crazy!!

We also talked some more about what we are going to keep doing as I am in my last month of chemo.  He suggested I get my thermography scan done in October or November.  That way we have some more time to see what is happening in this crazy body of mine.  I will probably end up seeing him in January some time again.  I am not sure for how long though, maybe a week?  I am going to keep on keeping on with chemo until I see him again and I am fine with that.  I feel like it is my safety net.  And I feel alright while being on chemo, so I don't mind continuing on with it.

He assured me that sometimes it takes a bit longer to get certain things under control and that I shouldn't worry about it.  And probably for the first time in my life I am not.  I just want to live and love and have fun with my family.

I am in a really good head space right now and I need that.  Last month seriously just about did me in.  So please be really positive around me.  Don't look at me with sad eyes, or have a hint of "it's not really working" in your voice.  I can pick up on it like you wouldn't believe.  Just treat me like regular old Geneva.  Laugh with me, joke with me and lets talk about life.  I am tired of talking about cancer.  I am tired of cancer consuming my thoughts on a daily basis.  I am done with it.  But if I need to talk about it with you, I will.  ;)

A year ago...

This was me a year ago.  It breaks my heart to look at BUT I have come so far, and learned so much.  Even if we are still in the throws of this.

I can honestly say that I feel good!  I feel better than I have felt in the past three years.  I feel strong and like I am somewhat who I used to be, but changed.

I have lost 40 pounds since last November and I still want to loose another 20.  That way I will be in a better BMI as I am still "overweight".  I just want to feel healthy in all aspects of my life.  And if I never loose that "last 5 pounds" WHO CARES!!!  I am alive.

I am really learning to love and cherish each day as the moment we are in is the only guarantee that we are here. 

I feel that I am back on my feet again.  Yes, I am anxious for yet another scan, but this one is Thermography.  So there is no radiation and it just shows up "hot spots" in your body.  No extra radiation is a total plus!!  I am living life "normally" once again, like I seem to do after every test result.  I am not going to lie though, it has been harder on me this time than any other to get our last results.  I have totally stepped up my game though and am doing everything in my power to finally make up some ground.

I can't thank you enough for your continued prayers and ask that you still keep us in them.  Prayer is such a great blessing.  It is so nice to know we are loved enough to be prayed for every single day.  Even if you forget - someone else is praying for us, and that means the world.

Summer Highlights.

W - He is growing up so fast.  And you know what?  I love it.  I makes me feel like I am not missing anything.  He has been so helpful and sweet.  The other day he folded ALL the laundry and vacuumed the upstairs for me.  He has had a lot of fun with K and C.  He usually spends most of the morning playing MINECRAFT which is fine with me because I get to sleep in.  Then  he like to get in a good dose of Harry Potter on the Xbox.  Judge all you want about all the electronic time - I am just glad that I can take it easy.  He is getting so tall and he is very excited about saving his money for his own computer... (that's not gonna happen!)  Today he asked me if we could buy some lemonade so he could sell it for $2.00 a glass.  He is all about making money.  It's really cute.  He keeps bugging me to make a chore chart so he can earn even more.  He has done amazing with being in the water this year.  He even went off the big diving board at Fairmont.  AND he rode in the tube yesterday at the lake.  All very big feats for this little big man.  I just love him!

K - She ran into a truck on her mini dirt bike.  The guy was on his phone and cut the corner in our subdivision and was on the right side of the road when he should have been on the left.  Ken was watching as she was coming up the street but she couldn't stop in time.  He had stopped his truck and she ran right into it.  She did have her helmet on but got a pretty big goose egg on her head and had a few bruises on her tummy.  We felt so bad.  But, in true K style, she was a trooper and I don't think it really bothered her too badly.  She has also become quite the swimmer.  She had no fear in Fairmont and took off the big diving board like a champ.  She also went in the tube yesterday at the lake but screamed her head off the whole time which was freaking W out a little.  She is constantly drawing me pictures and writing me notes and inventing things in her bedroom with C.  It usually turns out to be a huge mess but I am glad she is using her imagination.

C - He got a bungee cord in his eye.  (MC don't read this I don't want you to get queasy!  Plus you already heard it once. :))  We got home from Reno on a Saturday and I was bad and told Ken I wanted to skip Church on Sunday because I was so tired and we had so much to do.  So we did.  C and K were playing in the basement when all of a sudden we heard this blood curdling scream  (to which Ken and I did nothing because our kids always start a cry like that even if they just stub their toe - SO ANNOYING!!!).  Then we heard K say, "You wait right here I'll go get Mom and Dad!"  We jumped up and ran down the stairs, K was able to tell us what had happened so Ken was prepared, not me.  BARF!!!  C was standing down there when I got there and Ken asked me to hang onto him so he could take it out.  I said "NO WAY" and went a little crazy telling W and K to come over to the neighbours because we had to get C to the hospital.  I couldn't find the keys so our friend drove Ken and C to the big H.  Ken said on the way he finally relaxed and it just slipped out.  It was making the skin poke out below his eye, that is how he knew it wasn't in C's eye.  Still, to gross for me.  W told us, "If we actually went to Church today none of this would have happened."  He was right!  C also loves the water and keeps asking when he gets to go in swimming lessons again.  A few funny things he has said as of late are:

Ken took the kids on a walk through a tunnel in Trail after Chruch one afternoon while waiting for me to stop chatting.  C was running down the ramp and said, "I sure hope their'th  no thpiderth or Indianth down here."  (I am not trying to be offensive - he has seen Peter Pan)  The inside of the tunnel is kind of corrugated looking and he stopped and looked around a few times and said, "Thith ith a can?!"  Ken just about lost it.

Last night when we were watching a movie he said out of nowhere, "I wish I wath Santa becauthe he can make any toy out of a tree."  It was so cute.

All in all it  has been great so far and I am excited we still have a few  more weeks to go without having to get back into any routine.  We have all been up late almost every night and it's been really nice to spend time together as a family.  Not going to lie though, some nights I just wish they would pass out at 7.

Ups and downs... I think they are normal??!

Today has been one of those days.  Like I said earlier, it's been a little harder to pull ourselves out of this slump this time.  I don't know if Ken would want me to blog about this but I am going to anyways.

We have been thinking a lot lately and not in a very positive way.  Ken is of the mind frame that we better do the things that we have always wanted to do now so that if  "something happens" (we all know what that is - I die) then we won't have any regrets.  This has been really hard for me because I don't want to do anything "special" "just in case".  I just want to keep on living like there is nothing really going on.

Well reality this past week has not allowed either one of us to do so.  I have been just sick with negativity and wondering what else I could possibly do to turn things around.  I know I am not a write off yet.  No one has given me a time frame and I don't ever want one.  But it just seems impossible since our last results.

Like my Mom said, we were just so hopeful that everything would have completely turned around that it was a total shock when the news came.  On a side note, I did go back and look up my PET scan and they lymph node was 12.5mm's but is now 2.3cm's but our Dr said it wasn't noted on my last CT but it was on the PET - I know I am rambling, but I was glad to know that it wasn't something like 2mm's and has grown really quickly.  Although still quicker than I had hoped, but not as bad as I was thinking.  So back to Mom's train of thought, ya, I was completely crushed when we got the results.  But again, like our Oncologist in Reno said, he was alarmed by anything and to just keep up on my maintenance like we had discussed.

I was at the end of my rope today with the dog and I told Ken he had to go (the dog of course) and I was sorry, I knew the kids would be sad but I was ready to take him to the SPCA.  I broke the news to the kids and their little hearts broke - well not Carson's, we was excited to get a bunny instead.  I may have slipped that in there...

Ken came into our room (I was hiding because I was upset/annoyed at how "attached" everyone was to the dog and I just want to make my life easier.... turns out I am not the only one involved in this shite storm) and we finally talked. 

Ken told me he couldn't break their little hearts like that.  he said, "I see how sad they are about getting rid of the dog, well, what if in three months I have to tell them that their Mommy is going to die.  What will that do to them?  Then they won't have their puppy anymore; and he makes them feel better when they are sad, and then they are going to have to deal with you.  I honestly don't know how I would handle all of that."  My heart, like many times before, shattered at the seriousness of our situation.  It broke into unrecognizable pieces for my husband and my children and my family.

Ya, I know "life goes on".  I know it get "easier".  I know everyone "will be ok".  But honestly, that is no consolation to me right now.  I don't know if it ever is for anyone.

I know I have to be patient and wait for the next scan.  Our lives are broken up into three months at a time where everything is "normal" and then all hell breaks loose again.  We have to recover from that and get back to "normal" and the prepare for hell again... all whilst trying to put on for the kids like nothing is even happening. 

It is getting exhausting.  And like Ken explained it today, it's like he has been told 4 times that his wife is dying.  Oh the pain in his heart that he keeps all locked up.  I can't even imagine.

Having vomited all that out - I still can't even process giving up.  I can see why people do eventually, but I am so far from that and I am terrified that I will ever be to that point.  As hard as it is, and trust me when I say it feels impossible right now, I can picture my life, with my family, when my kids are teens around an island in the kitchen, being silly with their friends and me laughing along with them... not that I would understand their jokes because I would be "old"... maybe I am laughing because I am just so happy that I got to that point and see them at that stage.  I don't know. 

It is painful for me to plan for an uncertain future, as all of ours is, but I can't give up the "dream" that I had for our life has a husband and wife and a mother and father.  I want to be here.  I need to be here.  I just want to be a part of their lives, actively and in person.

A new song! Music is amazing.

After a pretty great weekend (hung out with my Mom and Dad with our family, did yard work and most importantly - celebrated Ken's 30th birthday!!!), but dark weekend (very emmotional and sad... I could cry at almost any thought that entered my mind, and let me tell you, they weren't good thoughts.  More or less another 1,000 "what if's" to add to my life.  You would think I would be done crying about the "what if's" but seriously, there is apparently an endless list.).

 So I looked up the words to this song and am adopting them into my life.  I loved this band when I was in high school and so I instantly like this song.  It's upbeat and I love the lyrics!

If the video doesn't pop up you might have to click on the link.

Getting my brave on.

Last night proved to be a little harder than I thought it would be.  Despair was surrounding me and the faint smile had been slapped off my face.  Sometimes they way reality is presented is a little off.  That is what I am going to choose to believe anyways.

There are certain words and phrases I HATE.  I mean that.  I hate them.  I hate the words palliative, hospice, quickly, sooner rather than later, aggressive... there are more.  Of course if you were saying to me, "We better get to DQ sooner rather than later." I probably won't hate that.  But in the context of cancer - I despise these words.

So of course last night I was re-playing some of the words that were used during a conversation that I had had.  And they swirled and swirled around like a sick, black tar that stuck to everything... including my spirit.  I didn't sleep well.  I was in prayer/pleading with my Heavenly Father for most of the night. 

Finally my little man crawled into bed beside me and this 30 pound piece of reality settled my heart and I finally fell asleep.

When I awoke, I couldn't shake the feelings of despair that I was drowning in.  Usually in the morning I am ok.  Usually I have a re-gained focus and life goes on but I am a little more aware of the things I need to be doing.  Such was not the case.  I spoke to Ken.  Didn't help.  Called my Mom back.  Didn't help.  Talked to my Sis... same feelings.  I finally called the clinic back.

R (bless her heart) calmed me a little, telling me not to panic or cry.  That it would all be ok.  She put me right through to "Dr." as she calls him.  I love it!

Anyways, I tried not to cry to "Dr" and he started to talk to me about my results.  He said that the last scans results were as of April 12th.  So there was almost two months that had gone by before I even started treatment.  Then the last scan was from the past two months.  Like he explained that this wasn't really an accurate way to tell if everything was working or not because I didn't have a scan right before I went down for treatment.  He said that my next scan will be the one that we are anxious to see.  I completely agreed with him.  He said he wasn't alarmed and calmly told me I need not panic.  Do we need a little reminder here that he has been an oncologist for 40 years!  Yes, board certified... not just, "studied a lot of cancer patients", he's an actual oncologist.

He explained to me, like he has before, that you can't chase stage 4 cancer with a scalpel or a radiation beam.  He reassured me that I was doing well and told me to keep up with my maintenance protocol like I am doing.  He said that my counts were good and that I was to keep on doing the chemo.

Like he told me when we were in Reno, they have a blueprint of what will work best for me, and if what I am on currently isn't the best, they can switch it up and we can work from there.  I also brought up the fact that he as said that even if your tumors don't go away, many people live many years healthy with STABLE disease.  He said, "And Geneva, that is when you have to shift your mind set to living with a chronic illness." 

He, once again, let me know I could call him anytime.

When I got off the phone I felt the blackness slipping away from my body.  I felt that I could breath and that once again, hope shone as bright as it did before. 

Although it took me a bit to jump out of this slump, I have.  I think I would be great at hurdles.  I really do!  I have faith in my doctor and his knowledge to heal me.  I have faith in my body to do what it needs to do to keep me alive and healthy.  I have faith in my Heavenly Father and his ability to whisper to me what is right.  I feel what I am doing is right.  And I am happy with that.

I used to write poetry all the time...

The person you remember.

I don’t want to be the one you remember,

I want to be alive.

I don’t want to watch the ones I love from afar,

I want to feel them thrive.

I don’t want to be a passing memory,

The one who slipped away.

I want to be here, on this Earth!

And live to my oldest days.

I want to watch my children grow,

I want to watch them try,

I want to be here when life gets hard...

And be here when they cry.

I want to hold my husband’s hands,

And feel them age between my own.

I want to look back on our life,

See how we’ve tried, failed, changed and grown.

I don’t want to be the one who made you laugh,

Who could brighten up your day.

I want to put my arms around you and tell you -

"Everything will be ok."

Finding that silver lining.

I should have posted yesterday when I was feeling good and great about life.  But instead, I waited and now you get slightly depressing Geneva.  Sorry!!

Yesterday I had another CT.  This one was of my chest, abdomen and pelvis.  The results of this CT we were really excited about getting.

Let's just rip the band aid off.  The lymph node has grown in size to 2.3 ms.  Not very happy about that.  Not at all.  Needless to say, I have been quite saddened by this news.  I'll get back on my feet tomorrow.

What I am trying to focus on and keep a smile on my face with, is the rest of the news.

The nodule in my lungs has only grown to 19mm's.  It was 15mm's after my PET scan in April.  So since then it has only grown 4mm's.  Ken brought me an amazing perspective that I didn't have before we received the news.  There was a month gap between my last PET scan and when I actually went to Reno and started treatments.  So like Ken said, it had a whole month to grow again in size - STILL slower than it was growing from my first CT in January to my one in March.  Remember we went from 4.3mm's - 14mm's in just three months.  So for it to only have grown 5mm's in the following three months - that is pretty good... Well, I am thinking that anyways.

My blood work all came back great as well as the scan of the rest of the body parts they checked out.  Meaning, my liver, spleen, reproductive organs and bones - all fine.

The Dr from here was saying that it isn't great news and that we should really get on top of this while we still can.  I still feel that I am doing what I should be doing, and I believe in the treatment I am getting, so I am sticking with that.  Although they are quick to point out that whatever I did in Reno isn't/didn't work, I am not of the same mind.

When I went to tell Ken today, he hugged me and told me he is still here with me and he will get me through this.  Whatever that is, he will be here.  He will hold my hand and pull me along... especially when I have that hopeless feeling, which is only natural, but I won't keep that feeling for long.

Although, I have had quite a few tears today, mostly all of the what if's in life... I really can't explain how hard it is to look at my little ones and wonder the what if's.  Just looking at them and watching them makes me want to cry uncontrollably... BUT I have to trust in my Father's plan for me and my family.  Whatever his plan is.

Tomorrow I will find my ground to stand on... again.  And keep going.

Money, money, money!!

When we were in the States, we had to go to a ATM every few days to take out cash for the treatments I was getting.  Every single time we did, Kate would ask to see the wad of cash and then exclaim, "Holy!  We are rich aren't we?!"  Little did she know it was only $3,000.00 at a time, but in 20's it looked like a lot.

Every single time I would tell her that money doesn't make us rich.  It is what we have as a family in this life and what we all have together is what makes us rich.  Then she would say, "But we're still rich right?!"  It was so cute.

One day when I got "home" from treatment, she busily made something for me while I had a nap and the boys were outside.  When I woke up she handed me this.

"Here Mommy.  I made you this money.  It should be enough to pay for the rest of your treatment.  I can make you more if you need it."

Seriously, I didn't want to let her out of my arms.  It was so sweet and so very special.  It is amazing how intuitive children really are to what is going on around them.  She has no concept of money, but knew we were spending it and she wanted to help.  I am one lucky Mommy.

What's in your drink?

Well, this is what is in mine.  It is gross.  I have added two small carrots back to it so I don't barf on the counter while I am chugging it back.  Carrot juice is high in sugar, something I am not supposed to be having but they make a HUGE difference.  I am supposed to juice 3 times a day, but if I only get one in that is ok too!  Some is better than none.

Want to try me?

I like to call it joker juice because it is deep green and purple.  But when I added the carrot back in, it looked more like a Halloween cup of crap.  Once it is all mixed up it is just looks plain old sick.

Feelin' Calm

That is how I felt the entire time leading up to my CT.  Calm.  I was reassured many times that there was nothing to worry about.  But, sitting in the hospital, waiting for the exam, well, that's an entirely different story.  That is of course when I talked myself into worst case scenario.  What would we do, how would we handle it, how would we tell the kids, how would I pick myself up, yet again, dust myself off and keep trying.  Knowing there was something in my brain was just so much harder to swallow.

The test went fine.  I was somewhat calmed by the fact the my GF's brother was working so it was nice to see a familiar, friendly face (the other guy that works there is pretty cool too!  He has been there for most of my other CT's) and joke around with the two of them.

But as soon as that test ended, I asked when the results would be available.  He told me later that afternoon they would be electronically but we wouldn't have the official results until 3-4 business days.  Of course.  More waiting.  Well, by this time I had talked myself into have this new problem in lives, and how were we going to deal with it.

I called Ken to see if he could phone our family doc and find out.  Last time he did this, he went in on his own but he said you could tell that our doc was wanting me to be there too to discuss things.  So he said that this time dr would want to see us both.  Fair enough, I just didn't know how I was going to take the news sitting in the office.  It was easier when Ken came home and told me and we could fall apart together.

Ken called the office and got us in.  We were getting ready to head out of town to a family reunion and my nephew's mission farewell (they serve for 2 years!!  Amazing boys!).  I was conflicted about wanting to know, but just really needed to so we could either fake it till we made it, or have a really great weekend.

Waiting (have I told you how CRAPPY waiting is?!) in the dr's office felt like forever.  When dr came in she told us that she hadn't had a chance to look at the results yet either so we would all see them together.  She pulled the results on her computer and started reading through.  Let me quote-ish "No cancer in the brain", well, that is all I heard anyways!!  I almost swore I was so happy!!  I felt like a 1,000 pound weight was lifted from my back.  I felt so great, the greatest I had felt in a long, long time.

She was happy for us too and wished us a great weekend.  I smiled and cried and thanked God all the way home.  I was so thankful for so many things.  The small miracles that happen in our lives are amazing! 

Now we are just going to figure out where to go from here.  I feel really good about the plans that we have made with our Dr here and I feel, once again, that I am in good hands.

The "Other" Doctor

Ken and I got in to see the other doctor.  What a relief!  We were greeted with a friendly smile and there was absolutely NO tension between Dr and us.  It was so nice. 

Dr explained that they couldn't follow the protocol of Dr. F, but that of course they would follow my care and follow up as I still needed it.  We knew that the "Canadian Cancer Center" wouldn't approve the therapy that I had received in the States, but it was so great to know that this Dr would be there for us anyways.

We discussed a few options of things that we thought needed to happen.  First of all, the head CT.  Ken and I were wanting to get a chest CT at the same time to just get it all over with, but Dr explained to us that we should start in one place and then go from there.  IF something showed up in the head CT then we wouldn't need to do a chest CT because we would already know what it was.  If it was in my brain, then it most certainly would be in my lungs.

Ken still really wants me to do a biopsy, which I do not believe in.  I believe in the Greek test that I had done which did find the cancer cells anyways.  What more do we need to know?  But Ken and Dr (and others) have expressed their opinion that they think I should get one done anyways.  I still don't see the point.  With possible tracking and such, why do it??! 

So the three of us came up with a plan.  If the head CT was clear, then we would do the chest CT.  If the nodule in my chest was bigger then Ken wants me to do the biopsy.  If it is the same size or smaller, then we will just continue on the way we are.  I read in Dr. F's book that sometimes the tumor doesn't go away, but that many people live a long and healthy life with stable disease.  I told Ken that even if it didn't shrink, but stayed the same, that was fine with me for now. 

We were still really worried at the cost of the chemotherapy.  We don't really have another 7 - 10 g's to spend on it, but I just felt that it was so important to finish this therapy that we started... the one I believe in.  It would be like quitting a race just before the finish line.  I wasn't in for that.

I called a pharmacy just below the border to find out the cost of the pills.  After a bit of searching they told me that all I could do was order a whole bottle of them, that was the only way that they would be able to order them in.  The cost would be - are you ready for this??  $273.00.  That was it!  WHAT A BLESSING!!!  I was so happy.  This, was completely affordable.

I called the clinic in Reno and they faxed the prescription up to a town just across the border where I could pick them up.  I finally grabbed them on Tuesday and started them yesterday.  So far so good.  Just the usual chemo bloating going on.  Seriously, I don't know what it is with chemo drugs and filling up like the good year blimp!?  I took one anti-nausea yesterday morning with my first pill (I take them 4x's a day) that was supposed to last 8 hours.  I think it must have because I felt fine all day.  Then I took my 3rd pill at 5 without an anti-nausea, and my 4th pill at 9pm, and was fine all night.  That is not to say I don't feel a little crappy because I do, but so far, it's not too bad.  We'll have to see how the week progresses.  But I am hopeful!!

Coming home shouldn't have been such a shock...

My sis and bro-in-law have been here for the last week and we have been soaking up the family fun time.  So I have not had the time to update all that has happened since we got home.

Sorry again for any of one of you who read my blog and are going to be offended.  Don't read it if you don't want to.

Let me get something out of the way for starters.  When I blog about doctors and such, I am strictly talking about the doctors I have come into contact with - all of whom are in the field of oncology.  Cancer is a trillion dollar industry/business, ya, I chose those words properly, who makes a lot of people a lot of money.  Since the "War On Cancer" began 41 years ago, the amazing menial life expectancy of most cancer patients has increased a whopping 2%.  THAT is pathetic.  For all the money, time, brains and research that goes into "the cure for cancer" that number leaves me speechless.  I DO NOT VIEW ALL DOCTORS THE SAME anymore, especially after my experiences with coming home.

When Ken and I got home, we came home with a prescription in hand and hope in our hearts.  Hope that our doctors here would co-operate with us and Dr. F.  I don't really know why I thought this.  (Only one Dr chose to support our decision in trying something else and said that he would oversee my care when we returned home.)  They didn't support my choice in going to the States to try a new approach and they were less than impressed when I asked for this help when we got home.

We PAID, out of our own pocket (and yours, for all of you amazing people who could help us out financially along our way!) for the therapy that I received.  It cost us over $30,000.00 which I am NOT complaining about.  We were just hopeful that when we came home with a written prescription for my oral chemo that I need for the next three months that the financial burden for the chemo would be lifted because I would be receiving the chemo at home.  Not so.

When I phoned the hospital to try and get an appointment with the Dr who said he would oversee my care upon returning home I spoke with the oncology nurse.  I am sure that I may have been reading into the nurse's tone a little, but after Ken spoke with the nurse later in the day, I was sure that I wasn't.

N (the nurse, for short) informed us that the chemo (which at first N had never heard of so I thought it was something different that maybe they only made in the US) would not be covered.  N wanted to see a copy of the prescription so N could ask my oncologist about it. Afterward N informed me that the prescription was the oral chemo for the cyclophosphamide that I had already taken.  This left me confused again wondering if that meant I couldn't have it again even though it was the ONLY chemo drug that proved to be effective in the Greek Test I had done.

Ken ran it up to the O unit later that day so N could copy it.  N wasn't in but he ran into N in the hallway on the way out of the hospital.  Their conversation went a little like this in point form:

* They have my best interest in mind and will do anything to help me through my cancer.

* They spoke a little bit about me already having had taken the chemo that was recommended.

* Ken was told that N thought it would be doubtful that any protocol would be followed by an outside doctor.  An analogy was given of a parent telling a local teacher that they were doing their job incorrectly because in LA they do it a different way.  Another analogy was given about asking an investment broker for advice after you have told them that their investment strategies were incorrect.  Ken asked, "So the doctor's here wouldn't follow another protocol from a US doctor out of spite?"  We were informed that the only treatment that would be followed would be one developed in Canada by the Cancer board.  So Ken asked if the dr's here looked at it and thought that it was a good and logical protocol could it be used.  We were told that that may happen but that this nurse has never seen it happen in their life.

* Ken mentioned that Dr. Dr had contacted us while being in the US and that Dr. Dr had told us that no bridges were burned and that my best interest was still the most important thing to this Dr.  At this point, N snapped back how upset N was at this doctor for doing such a thing and how unprofessional it was.  And also that he had been "chastised" for doing so. (Classic example of a doctor stepping outside the box and what happens within the medical "community" if you dare do so.)

I was really upset.  Apparently my life is a game and I am a pawn in which to make money with.  If I am not able to do that and I want to TRY something different with MY OWN BODY, then I am pretty much a write off.  This is how I feel and I know that those that I have been in contact with would swear up and down that this is NOT the case as "my best interests are in mind".

I phoned the next day again to get an appointment with one of the Dr to talk about getting an MRI instead of a CT.  I can't remember if I told you that "a single CAT scan of the chest may be equivalent to 100 plain chest X-ray films in terms of radiation exposure, and a PET scan performed with a radio-tagged sugar molecule may deliver five times the radiation dosage and exposure of a single CAT scan."  TWO dr's of mine confirmed this before I ever read it by telling me that they don't like to do CT's as often because they are finding that over time they are causing tumors and tumor growth.  They used to do them all the time but they are limiting the amount of these tests that people have to have.  At least they can agree with this statement! 

Back on track, Dr. F told me to ask for MRI's instead of the above mentioned as there was less radiation exposure which is hard on your immune system if it is working harder than normal.  We wanted to get in and ask if we could have an MRI instead so I got in with the other Dr (whom I greatly respected) and not the Dr that said he would oversee me when we returned home.  Fine with me, just wanted to ask a question.

When we entered the exam room you could SERIOUSLY cut the tension with a knife.  It was awful.  I felt sick.  The Dr asked us why we were there and we told him about the other Dr (confused yet??) who had called us to talk to us about things if something should arise and just let us know what we could do.  I went on to explain that I was supposed to go in for a CT at which point I was cut off and asked why.  I told Dr that it was because there could be a possibility of mets to the brain and we just wanted to rule that out.  The response to that was, "You don't look like a person with metastases to the brain."  I didn't realize that "those people" actually "looked" like something different.  Like my sis said, she has a mass on her pituitary gland and you wouldn't know it was ever there unless you tested for it.  Luckily hers is benign.

This is also what I find completely unfathomable... when you have cancer, the only way to detect it IF you live past the 5 year mark (in my case) it to wait for more symptoms to arise.  So on the slight probability that I may have a brain mets, we just ignore all of that until more symptoms arise?  Does it not make more sense to stay on top of things and maybe find out from the beginning what you are actually dealing with??

So knowing the pathway that breast cancer travels, does it really hurt to check it out?  Once again being confused by the reaction of the Dr I asked, "Well then, do I just not worry about it?"  The response was basically just that, to not worry about it.

After this point we got into a huge discussion about needing the chemo, why we wouldn't be able to get it covered in Canada (because it wasn't a "protocol" (seriously, I don't know how many times that word was used in our conversation) used in Canada), how ego's weren't hurt because I am not the first patient to seek other treatments, how a biopsy was the only way to figure out what we are dealing with (and if you read a few posts ago you would understand why I am not 100% game to cut into my body again with the myriad of possibilities that can accompany another biopsy), how my care is still important to them (even though I am sure on all accounts we would all be happy to avoid one another for the rest of our lives!!), how silly these "home-made remedies" are and how they burn bridges of treatments that may have worked in the future but can't because they were given in low doses, blah, blah, blah.  It goes on and on.  And then the grand finally, "Well, I have to get back to my patients who actually want and need my help."

Yes, you heard me correctly. 

I thought I was in charge of my own body and how it could and should be treated.  I am 100% sure that I pay into my BC medical, each and every month and that I am entitled to "care" (whatever the hell that means anymore).  I am so glad that the "patients best interests are in mind" (again, all of this having to do with CANCER) as long as the patient is compliant and doesn't really ask any questions or seek further knowledge of what else might extend their life above the freakin 2% survival rate that this "war" has given those with cancer over the past 40 years.

I know I am not a doctor.  I know I don't understand the reason why everything is done according to protocols and such, but my heart, my spirit and my Father in Heaven have led me to information that I feel is far more helpful and beneficial than anything that I have found anywhere else so far in my journey.

I have great respect for doctors who are actually doing their job for the "patient's best interest in mind".  I mean that from the bottom of my heart.  I am also thankful for those who don't mind stepping to the side of the box and maybe even out of it to help another.  I know that doctors go to school because they truly want to help another.  It is just sad to me that money plays such an ginormous roll in dictating what actually will happen with people and how they will be treated and how blinded some can be to the fact that there are actually some other possibilities out there in this world.  Afterall, we eventually did find out that the world is round!!