Sunday, June 24, 2012

Let's Play Catch Up

I always seem to leave things for a while and then I have to blab on and on about what's going on... so, I guess this is going to be another one of those posts.

Last week when I saw Dr. Maged he was looking at my CBC and was wondering if I was getting sick.  What a smart man!!  He noticed that some of my counts were off and possibly indicating that I was fighting something - and with the kids being sick, he had good reason.  I was feeling alright, I was in the throws of a healing reaction so it was hard to gauge if I was "sick" or not.  He decided to give me a prescription anyways to see if it cleared me up.

That was on the Thursday afternoon.  I was supposed to take it for 5 days.  I saw Dr. Maged again on Tuesday and was feeling a lot better by then... finally more like myself.  I continued through my week as normal feeling ok.

I did chemo on Monday, again feeling ok, did my immune therapy on Tuesday and went in on Wednesday to do my last chemo and they said my counts were WAY off and that it was probably due to heparin ("Heparin is a naturally occurring anticoagulant produced by basophils and mast cells. Heparin acts as an anticoagulant, preventing the formation of clots and extension of existing clots within the blood. While heparin does not break down clots that have already formed (unlike tissue plasminogen activator), it allows the body's natural clot lysis mechanisms to work normally to break down clots that have formed."  They use heparin to flush my port line and keep it clean and from getting clots, like it said above.) being left in the port line.  Not really a big deal.  They re-drew my blood and were going to check my CBC's again to see if it came out normal so I could do my last chemo on my last day.

I saw Dr. M again that day, I think it must have been Wednesday.  He wasn't in the room and ready for me so I snuck out really quickly to go pee.  When I came back in he looked at me and asked me how I was feeling.  From this we started talking about my blood counts and he said that when I walked in the room he thought that "I looked to good to be feeling the way" that my blood counts were showing.  He said that it must be due to the heparin being left in my line and diluting the reading of the CBC.

When I came in on Thursday, my last day!!, I was informed that my counts were still off and that I would have to talk to the doctor about doing chemo.  Talk about frustration.  We had spent the entire day before cleaning up the trailer and packing and getting ready to head out on the Thursday.  We were planning on leaving and had our route home all planned out.  Waiting another day would just push it all back BUT if we had to do it we would.

We waited patiently to see Dr. Forsythe.  He finally came in and we started talking.  Of course we asked about not being able to finish up with the chemo and how that would effect treatment and such.  He said it would be fine because I was going to be coming home on a pill form chemo for three months.  He told me to take off about 10 days, get my counts back up and then I could start up again.  He said I should be ok and that I probably won't loose my hair. 

I asked him why my counts would be so off when I felt alright.  He explained that he didn't think that my body would be able to handle full dose chemo again.  With my counts depleting so badly on a 10% dose, it just showed how hard it really was on my bone marrow.  It is just crazy for me to think about how far I have come since I finished up chemo, but how deeply my body was effected by it all.  It just made me realize that I really have to take it easy still and rest and not overload my life.  Getting better is the most important thing.  As much as I want to be "normal" again and do all the wife, mommy, sister, daughter, friend things, the most important person in my life has to be me.  And I need to take care of her so that I can be here for a long, long time.

I have more to write, but I am good for tonight.  I just wanted to let you know what was happening and such.  We are home safe and sound.  Many thanks to all your prayers and thoughts.  Again we are so blessed for having you in our lives and can't thank you enough for all you have done.

Sunday, June 17, 2012

Little moments to keep me going.

Ken and I talking as we are watching C count his rocks he collected yesterday.  I was watching in awe, his thick, dark eyelashes, two little freckles by his left eye, his skin tanned and his hair a night full of mess.  I said, “Do you ever just look at them and wonder how we made them?  How they are who they are?”  C kept putting his rocks into his pouch and said, “We came from Heaven.  And then we popped out of your belly.”  He was so serious and so right.  The blessing of being a Mommy.

Can't hold it in any more.

I have been tossing around the idea of posting this... I want it to be well meaning.  I don’t want it to be negative or rude because that was not the intention of the next chain of events that set my life and emotions into another tornado of uncertainty.  I have debated not saying anything because I don’t want to be offensive.  But I thought, “This blog is my thoughts and feelings.  This is my outlet.  This is MY way of healing and dealing with our life.”  Regardless of who reads this, this is mine.  And I am entitled to how I feel and how I express myself. 
I am not wanting to be offensive, so please do not take it this way.  I just need you all to know a few things that are helpful to me and if you find it hard to respect then please don’t read my blog.
My upheaval in my feelings started with a very well intentioned phone call.  I was at first very grateful for the care and concern , and I still am, but it quickly turned to fear and freak out.  Exactly what I don’t need.  I know that this was NOT the intention of the call. 
Because of some of the things that I was talking about in previous blog posts, it brought attention to our doctor from home.  I don’t want to elude to anyone in particular so I am going to keep this generic.  And again, it is just because I am where I am in my life that this call effected me so deeply.  A call was made to Ken to make sure he was aware of some things that may be helpful if a situation arose.
Dr. Dr noticed that I had been talking a lot about headaches and thought that this wasn’t a normal thing for me.  I am not a headache person.  Like I had posted I was sure it was because of heat and just adjusting to being at a different elevation here.  I didn’t really think any more of it than that.  This did lead Dr. Dr to think that I MAY have possible mets to the brain.  If anything should happen down here, like a seizure, Dr. Dr wanted to make sure that Ken knew what to do.  Dr didn’t want us to have to pay huge medical bills if it wasn’t necessary and just wanted to make sure that we could handle things without a huge cost.  Dr told Ken a few different things that may happen and told Ken how to be prepared. 
One, like I said previously, was the possibility of a seizure or even stroke like symptoms.  We were encouraged to be prepared and just get some Dex (steroid I was on before that made me “so darn beautiful”) as the Dex would help with the swelling in the brain and bring things back to normal until we can get home and get some testing done.  Seriously great info!  Like I said, we were very thankful.   We were well wished and that was that.  Very nice.  I mean that from the bottom of my heart.
However, I am in a different state of mind than I have ever been in my life, and when it comes to health issues about myself, I am much more sensitive.  I was relatively unaffected by this call, but that didn’t last long until I started to over analyze every single detail in my life that could point to brain mets.  I don’t know if you remember me saying before that once it gets to your brain it is trickier to find ways of helping.  In other words, it’s not that good.  Symptoms can include: decreased coordination, clumsiness, falls, sometimes fever, generally feeling ill or tired, headaches – new or more severe than normal, memory loss, poor judgment, difficulty solving problems, numbness, tingling, pain, personality changes, rapid emotional changes, seizures, speech difficulties, vision changes, vomiting  with or without nausea and weakness of a body area.  So of course I started to think about my every single move in the day and what it entailed.  How was I feeling?  Did I have a nagging headache, was I feeling dizzy or different than I normally do.
I decided instead of having a full out freak out that it would be best to make an appointment with Dr. F down here and pick his brain about what he thought.  He asked me a few questions and I started to answer.  I explained to him that it is hard to figure out how I feel “normally” because I am still trying to figure out my new normal with everything that has happened to my body in the last year.  I told him that my memory doesn’t work like it used to, but I figured that was because of the “chemo fog” that can be life lasting.  I had noticed an increase in headaches but thought that was because of the difference in weather and running when it was warmer... I do get headaches at home if I overexert myself and then don’t drink enough water – I just thought I had done the same thing here.  He asked me if I was dizzy at all, and I said that I was at times, but nothing that I really noticed as an increase.
He told me that I probably shouldn’t worry about it.  I was glad that at least he was aware of things and had taken note of our talk.  I thought I had it under control emotionally and that I was ok.  What I did notice however is that I started to over analyze EVERYTHING and freak myself out.  I didn’t want to say anything to Ken because I didn’t want to admit that anything was bothering me and most certainly was not going to admit to myself that maybe, just maybe something wasn’t right.
Well, that didn’t last all that long.  I finally broke down today and lost it... quietly, outside the trailer with Ken.  My kids have seen more than enough in the last little while, and I honestly just want them to feel like kids.  I don’t need them to worry and wonder and freak out.  They don’t need that.
I finally decided today that for ME, I needed to get this out of my head and off my chest.  This trip is supposed to be a healing one for my family and I.  I am supposed to be stress free and thinking positively.  I am supposed to be resting my body and my spirit.  I realized that I haven’t done any of that since we got the phone call.  I have been on high alert and internally freaking out... trying to outrun the huge, black could that is just behind me ready to open up and drown me with its downpour.  This, my friends, is not healthy.  At all.
All I could think of last night was if I wanted to “know” what is going on or not.  To have the possibility brought to the front of my mind again that this could possibly be another met, one to which the outcome isn’t all that grand, weighed especially heavy on my mind and heart.  When Ken and I were talking today he said that he would rather be in front of the 8 ball instead of behind it, I guess something inside of me agreed.  So I guess our next step when we get home will be to get in for an MRI – hopefully to put our minds at ease...  And pardon me, but damn it, give us a break!!
But until that time, I want to focus on nothing but healing (try and put some distance between me and that cloud).  The purpose of our trip.  I want to focus on getting better, not worse.  I want to plan for my future with my family and be there.  The human will is amazing, and there are many miracles that come about on this earth each day. 

The roller coaster of all roller coasters.

Today started off great.  My infusion went well.  It is always a pleasure to be with those that are going through the same trials.  We lighten one anothers loads... but not quite like our Savior.
I think at times I dont’ give Him enough credit.  I KNOW he suffered every single pain, heartache, emotion, burden etc. that I feel.  He knows exactly how I feel.  He suffered for me.  He suffered not only for the mistakes I made, but I think most importantly for the heartaches I would feel in my journey in my life.  That is a huge comfort to know I am not alone.  I literally feel Him lift me when I can no longer go any further.  He is by my side.  He is cheering me on.  He is on my team.  He loves me.
Maybe you think I am currently in a delusional state.  I am not. 
I spoke with Dr. Foresyth today... I love that man.  He is amazing!  I haven’t been feeling all that great and so we chatted about healing reactions.  Like he said “With homeopathy, it usually gets worse before it gets better.”  I think that is my current state.  For once the nausea isn’t bothering me, but I am very emotional – bawling like a baby, my body aches, and I currently in the camper while it is 35+ outside, in my jammies, under the blankets.  I have a fever and then I get hot, you all know the feeling of a  fever.   It is part and parcel of my body healing, but let me tell you, it is hard to go through.
Like I have posted before, I thought this would be easy and in the grand scheme of things it is, but in these moments... it is so hard.
Thank you for letting me get my feelings off my heavy chest.  Thank you for letting me talk.  Thank you for being non-judgemental and completely supportive.  Like we have said many, many times WE COULD NEVER DO THIS WITHOUT YOU!  YOU are also a blessing in our lives and we pray for you and your families every night (blanketly, but still, our Heavenly Father knows who you are and that you pray for us) and thank Him for your prayers and love.  We hope that your prayers are answered just as ours are.  We pray that you have peace and clarity amidst your challenges, and we pray that you know he is there for you, just like he is for me, to help you and heal you.

Monday, June 11, 2012

Babes and butterflies.

I don't know if I told you that we smuggled two caterpillars into the States with us.  W was so excited because he was so sad that he was going to miss this in his class.  He LOVED the whole butterfly unit last year and I was excited for him that he was going to be able to still be a part of it this year (thanks to his wonderful teacher Mrs. R!!).
We watched them eat and grow fat.  W taught us about their disgusting “skull caps” and how they shed parts of their skin when it was too small.  He showed us their poo as well.  He corrected us many, MANY times as we watched them patiently (honestly, I thought it was disgusting – but he loved it so much so I left them on the kitchen counter!!) turn into their chrysalises... moths have cocoons.  And then we waited some more.

Yesterday while I was cleaning the kitchen up a little I noticed some movement in the plastic container.  I quickly called Ken and W (I don’t do bugs, even if they are beautiful) and we got the two specimens outside.  W taught us that as soon as they start to emerge – not hatch!! – that they needed to be outside with a net underneath of their chrysalises so that they didn’t fall onto the ground.  If, however, they did, we were to take a pencil and hold it by their feet until they were able to hold onto it and then put them in the branch of a tree or bush.

Being as one was already hatched out of its cocoon JUST KIDDING W!!! Ken and W quickly got to work.  Dad taped (our hero) the butterfly which was holding onto a pencil, into a tree and then made a net below the other chrysalises so that if it happened to emerge while we were out and fall, that it would still be ok. 

It was so fun to watch the excitement of our little family as we watched this miracle of nature.  The kids were enthralled all day with these two butterflies.  We had some running around to do and every time we came home, W quickly checked on his butterflies to see if they were still around... or had emerged. 

The first butterfly had managed to gain enough strength to take flight.  My son should be a spy because after it took off the first time and we headed out again, he found it over and over again in the bushes just down from our site.  He was so happy when he got to see it again.  It just made my heart melt to see his joy. 

Today, he said a prayer before we headed to church that his second butterfly would emerge.  And wouldn’t you know it!  It did!!  As he delicately handled this second butterfly and took some pictures I was again in awe of his caring ability, his way of being so gentle and how darn smart he was!  I was a proud Momma, even though we aren’t supposed to be proud, I was.

Shortly after this second butterfly was able to gain enough strength to take flight and that was the last time we saw it.  When we were eating lunch a beautiful yellow and black butterfly came by the window and W told us all about it, how rare they are and their neat abilities to be able to survive. 
I was so thankful that we all got to witness this tiny miracle of nature together as a family.  I was so thankful that my son was able to teach us all and that we were all able to learn from him.  I am so thankful that we have this time as a family.  It is precious beyond measure to me.  And even though it is hard, it is one of the greatest blessings in my life.

Told you today would be better.

The WiFi isn’t working here so when I finally do get a chance to post there will probably be a few... long winded notes from the south.  But you love it don’t you!!
Ok. To get the crap out of the way, I’ll just rip the bandaid off and then stop my complaining.  Today I do feel better.  I haven’t really been nauseated all day which is really nice.  The entire lining of my mouth is raw however and starting to peel away again – you know, like when you eat a whole bag of S & V chips when you shouldn’t have!  The only time I really notice it is when I drink my lemon water, which is all the time because I am once again nauseated by regular, plain old H2O.  I was trying to think of other things that I could drink that aren’t full of chemicals, sugar or any other crap that I shouldn’t put into my body.  Any ideas??  I am really at a loss.
Today was a good day.  We were late for church but stayed for all of it and the kids had some fun and made some friends.  Well, W and K anyways; C, I think is going to be Ken and my friend eternally.  Ken maybe shouldn’t have talked so much because he gets to teach the lesson in Priesthood next week.  LOL  I just smiled and nodded.  I’ll stick with that.  ;)  It was just so nice to feel at “home” and be filled with the Spirit.  That is the amazing thing about the Church, it doesn’t matter where you go, it is the same everywhere and we are all on the same page.  I just find it comforting.
When we came home we had a nap while the kids watched a movie and C ate 4 packages of fruit snacks.  He is such a little turd.  He is into everything he shouldn’t be.  W took charge and was quick to let us know about C’s “snack” as soon as he noticed and then get after K for cutting chunks off of the block of cheese.  But the nap was worth it and W did a good job.
We broke our Sunday rule and did go to the pool for a swim.  It was warm and there was, for once, no wind.  And the biggest reason for going was that I was actually feeling well and I wanted to be able to swim with the family.  Tomorrow I will have my port hooked back up for the week and that means no swimming.  I am thankful however that I am allowed to shower!  Being as I smell so greatly...

Don't read if you don't want to be sad.

I have to be honest.... I am mildly miserable right now.  I feel like a huge piece of crap that is waiting to barf all the time.  Just like the beginning of pregnancy.  Smells bug me, food bugs me, the smell of me bugs me.  I just need some time to find my silver lining again.
I feel so guilty when I complain about this in comparison to my gf’s load to carry.  I think of her constantly.  I cry for her often.  I pray for her always.  I wonder how her days are, her nights, how she calms her children’s hearts and her own.  I wonder how she gets out of bed some mornings and smiles (because I know she does).  I can’t help but wonder if one day, Ken will be alone with our children and I wonder how he would do all of it.
I find myself a lot lately watching him with the kids.  He is so good.  I mean that.  He is patient, kind, loving, smart, quick and delivers  with the right amount of discipline that is needed.  Case in point, he chuckled to himself as he cleaned up pee all over the floor from C trying to pee on W because W accidentally got C while they were peeing together.  I just wanted to hit him.  Not Ken.  I wonder if this is how he would be if I wasn’t here.  He would cuddle with our kids, call them “sweet-heart”, bud and pal.  He would hug them when they were sad.  He would laugh with them when they were being silly.  He would patiently help them in their problems and trials.
Sometimes I watch from a distance and wonder if the distance that I will have to watch from is Heaven.  I honestly don’t know how people do it. 
When we came down here the first time, we had our “talk” about the “what if’s”.  Not something we dwell on but something that needs to be discussed.  It broke my heart.  I couldn’t stop thinking of my friend and her having to plan her sweeties funeral.  How?  I know all the answers to these questions, but sometimes they are just plain overwhelming.
I told Ken that there are days and moments that I feel myself pulling away; or trying to make them angry at me so that “IF” it happens, it won’t be so hard.  So hard for them and so hard for me... to say goodbye.  I have to apologize, this is completely a downer post, but I need to get it off my half-chest.  I know it isn’t good bye forever, just for a while... but still – it seems so impossible.
But then I remember what my Mom told me.  Whether or not we (ALL of us.  None of us really know when our “time” will be) have 1 year or 40, we need to live it to the best and fullest.  There is no sense in being dull and down for the 40.  What a waste.  Like I said, I just need to vent and then get back up and pull up my big girl pants.
So once again, this is a scattered, crappy post.  All over the place, just like my emotions the past few days.
The therapy is harder than I thought it would be.  I feel sicker than I thought I would.  I feel guiltly because I thought that we would be able to do more as a family.  Instead, I find myself sleeping away the afternoon’s, even though I need it, and having little to no patience for the rest of the day.  I just really want to be able to have the rest of my life to make up for this crappy year and a bit.  I don’t want to take anymore away from my precious family than I already have.  I don’t want my kids to worry and suffer any more than they have already had to.  And I want my husband to not have to worry about EVERYTHING!  They all amaze me.  I just need to start amazing myself.
Well, I think that is more than enough BS for one evening.  I know my next post will be better and I know I will feel better.  Plus I do have some really fun things to blog about... with my amazing family.  Again, I love you all and miss you and I hope that all is well as I pray that it is for you.

Wednesday, June 6, 2012

Do you wash your fruit and veggies before you eat them?

First of all, you never know what sick fart has taken a huge dump in desperation at the grocery store and run back out to shop, without washing their hands, and touched 25 peppers looking for the perfect one.  You never know which field worker was too lazy to walk to the bathroom and just decided to pee on your grapes, celery, lettuce or strawberries.

Today at Costco I bought organic grapes and blueberries and because of how I was feeling, debated washing them before consuming them.  For those of you who know me you know that it totally out of character.  I don't like pee or poo on my food but I didn't really care.

I remembered that I bought some fruit and veggie wash so I filled up the sink and plunged my fruit in and gave it a swirl around a few time, let it soak for a few minutes and then rinsed. 

This is what is left over after buying organic fruits and veggies.  When I do it with regular fruit and veggies the amount of grime and crap that comes off is even more.  You should wash too! (I am sure most of you do.)

The Past Few

All in all I would have to say yesterday was a pretty good day.  Don't forget, my first day after a chemo.  I woke up at 7:00am and went for an AMAZING run.  It was only 6+ outside with a cool breeze and it felt so nice compared to the heat.  I ran harder and better than I did last week... A DAY AFTER CHEMO!!!

Yesterday I had my FIT  and IPT therapies and as soon as I got back home to the trailer Ken could smell it on me.  No sneaking anything past him! ;)  W said he could too but I think he was just going on Ken's lead.  Little fart.

One of the nurses told me that if I woke up in the middle of the night all sweaty that I needed to shower to get the toxins off.  There is no point in reabsorbing them after your body works so hard to expel them.  Good info to know!  I NEVER did that when I had night sweats with the other chemo.

Some of the similarities however are that I am back to some pretty weird arse dreams!!  Chemo must be some crazy drug that is for sure!  And, because I love to be so honest with you, I am back to "chemo farts" (gross I know but we all know how classy I am anyways) and constipation.  I have gained about 4 pounds in the past few days because I can't go to the bathroom.  I was really annoyed and sad because I have been working so hard to have the numbers go down.  But after I sat for 10 minutes and pooped out a golf ball I decided to give myself a bit of a break.  That is hard work you know - and I know the rest of me is filled up like that (I tried again and got out some other various sizes of golf balls and larger pieces of hail.  LOL I am so disgustingly funny!... Don't read if you don't like.).  Dam chemo!!

This morning I felt really good again and got up and did my workout.  I knew I would be tired when I was done with chemo today so I planned on crawling back into bed for a nap this afternoon.  I felt good when I left the clinic today, ran around and grabbed a few things... you know, it is hard being LDS...  I feel like I have to have food storage and supplies on hand in my camper - being the size it is, makes it a little tricky.  I feel like a total hoarder, but at least I feel a little prepared...

I am not one who gets headaches so I really feel for my Mom, Sis and gf M when they get migraines, but I think I was close to one by the time I left Costco.  I just felt awful!  I came home, Ken made me lunch and put it in the fridge, I took half a Gravol and two ibuprofen and hit the bed.  Woke up to pee a few times because I drank 1.5 liters of water in 40 minutes, drooled all over the place (only when I nap, it's really weird.  I have always been that way... and rarely at night.  I just flipped my pillow over... again.) but slept well for a few hours.  Ken took the kiddies swimming so it was just me and the AC.  I still have a headache, but I can function right now with it.

Other than that, I feel pretty good.  Not really any nausea, but I am going to still take some Gravol tonight to help me sleep and ward off any unwanted feelings of barfyness.  I plan on taking it easy for the rest of the day and maybe just watching a movie as a family after supper.  I don't feel like doing all that much so that would be nice.

Again, I'll keep you posted.  I love you my family and friends and I miss you.  I constantly wonder how your days are going and what you have been up to.  I hope all is well.  I'll chat with you again soon.  :)

Monday, June 4, 2012

First Chemo

Well, I am back on the chemo-train.  Today was my first chemo treatment.  It was really neat to see the small, small, SMALL bag of chemo hanging there for me instead of the three huge bags that usually go in.   I was in the office at 9am and let me tell you, it's busy there!!  I started chemo around 9:30.  They check your vitals before you start anything and two more times while you are getting your chemo.  Like I explained before, the chemo is delivered either with or right after the IPT (Insulin Potentiation Therapy) so a smaller dose is more effective.  It is explained really well here: 

For breakfast I had to have 2-3 scrambled eggs with a little salt and pepper and then a cup or green tea.  Let me pause here for a moment.  Green tea tastes like warm grass... not my favorite.  Back to my other train of thought, no carbs or anything because they turn to sugar.  We checked my blood sugar before I started the therapies, during and after. 

The thought is to get my blood sugar low enough while having the chemo so that the chemo and IPT work the best.  Once your blood sugar drops off to the point of feeling faint, sweaty, shaky (diabetics I am sure know this all too well) or dizzy then you have to drink some organic OJ and then have some sort of protein sandwich or wrap.  This helps to bring your blood sugars up really quickly again and the protein helps to keep it level.

I was given some anit-nauseant and steroids (counteract any reactions) before the chemo was started (BTW down in here the States - they don't have Gravol.  They do have gravel though so one couple looked at me a little weird when I told them we have our kids Gravol for the trip.  Then I remember my Sis told me that Americans would not have any idea what I was talking about.  It was kinda funny.).  I guess I thought that I would feel completely normal today and I did for a while.  But a headache creeped up on me - again - it seems to be coming around every afternoon to early evening, I am tired and I feel bloated and gross like I did on chemo before.  I have indigestion again so it is hard to tell if I am nauseated or not.  But like I said, I just don't feel completely like myself.  I am ready for bed.

I skipped my workout today so I really need to get one in tomorrow, preferable before treatment because I know I won't find the time after... like I was going to today.  But on the whole I would say that today hasn't been all that bad.  By this time with my last chemo's I was swearing off the barfs and hot flashes and feeling like a huge pile of giant shiz for a few hours now, so I guess I am doing pretty good!

Tomorrow I have immune therapies so I will be back to the creamed corn aroma with iced tea pea and a bad smeste in my nose/throat.  On these days I also have to take 27 pill form supplements - should be full after that.  I do take them usually after each meal though so I guess we'll call it dessert?!

I am sure I will be feeling pretty good tomorrow too!  And if I am not, who cares, it is three weeks!  A complete recovery time between my old chemotherapy's.  The atmosphere here is amazing.  I really feel cared for.  The staff if really funny and compassionate (well there is one exception; it is my goal to get one cranky nurse to like me.  This morning when she was taking my vitals, she needed my weight and I asked her if I should take my hoodie off.  She said I didn't have to.  So I replied, "Well, I just want to let you know it weighs at least 5 pounds." (obviously joking!)  She snapped back, "Then take if off!"  I felt like a silly little kids who had just been reprimanded for being such.  Like I said, I'll work on her.)

The most amazing thing today was meeting and talking with people with all different stages and types of cancer, picking their brains about things, sharing ideas and recipes, telling about our lives, where we are from and what we do and finding out that we all have common ideals and goals.  That is a strength to me.  And I am so blessed and thankful to have been directed and led here.

Saturday, June 2, 2012

First Day of Treatment

Alright.  Sorry I have neglected, once again, to keep you informed as to what is going on.  Yesterday morning I was heading out for a run... which I did not want to go on because when I start my run here it is already like 18+ at 7am so I am not motivated to get up early and run while it's cool because I would have to do that at 4am and even then it's still 13ish... I like running when it's cold - cool... so my motivation was to hand Ken the phone and ask him to phone the clinic and find out what is going on and when I would start.

I like to think that kept me going around the marina, but the freakin' heat!!!  Seriously, I think the sun follows you right in your face the whole time!  But, I was eager to get my arse back "home" to find out if he found out anything.  He did!!! YAY!

We had an appointment at 12:00pm.  We were late.  Of course we were late.  But Dr. F was late too so it was ok.  We started by having my vitals checked and then we waited for Dr. F to come in and see us and explain what has been found out.  First of all, my hair sample came back normal.  No heavy metal toxins built up in my system so that is great news.  Like he said, at least I don't have to fight that too.

Then onto the good stuff!!!  He went over the report, which is like a biopsy.  He said that we will start to see a lot more of this sort of stuff starting to happen because it is not invasive (unless you hate needles but I hate biopsy's more) and they CAN tell from your blood sample whether or not the cells are cancerous.  Well, I choose to believe that anyways.  I know there are some that won't.  But I don't have to worry about them.  We just won't talk about it. ;)

So, they tested my cells against 50 different chemotherapy's.  The reports show the percentages of the effectiveness of each chemo with my type of cancer.  When they come up with your custom treatment plan, because I am not like the girl before me or the one after me even though we have the same disease, they only pick chemo's from the top 55%.  If they aren't above that, they aren't as good as others would be.

Because I like to be dramatic, I like to say that the chemotherapy protocol that I was on was in-effective... for a few reasons, like dealing with (we'll keep this rounded out for everyone that reads this) possible mets.  I know it is not a guarantee, nothing is.  But Ken quickly pulled me out of my excited box and showed me that what I was on was in the top 2/3rds of everything that I was tested against.  I was on 5FU which was 40% effective, Epirubicin - 42%, Cyclophosfamide - 65% and Docetaxel -50%.  The 5FU had another drug called Gemcitabine in its grouping that would have been 83% effective.  The Epirubicin had two other drugs in its category Etoposide at 62% effective and Mitoxandrone at 55%, both higher than the 42% that I had taken.  The Cyclo was the most effective of the 5 drugs that I have taken, but still there were three other drugs that would have been more effective than it coming in at 81% (Cisplatin), 76% (Carboplatin) and 71% (Oxaliplatin).  I just found this all to be very interesting.  I am so glad that I had this chemo sensitivity testing done and I am so thankful for it. 

Dr. F said that there are about 15 chemotherapy drugs that will be highly effective in treating me now and should put me into complete remission.  And if it doesn't, at least we have my "blueprint" (as he called it) for any further treatments I would need in the future.

On Friday afternoon I did an immune booster to just prep me for starting chemo on Monday.... again.  But, like he showed me, they only use 10% of the dose and most people feel just fine.  I am crossing my fingers as all I brought down with me was some left over supergravol from chemo last time and I don't know if I felt it really did anything for me at all.  Only the good stuff worked, and we don't have coverage down here so... I 'll be fine.  ;)  I will do chemo twice a week for three weeks and the other days I will have the IPT therapy, Poly MVA, High Dose Vit. C and Hydrogen peroxide therapies.  I have quite a little bag full of supplements that I will be taking as well.

The only thing that sucked about doing the immune booster is that I could taste/smell it.  It is hard to explain unless you have had some sort of IV treatment that you can taste/smell behind your nose, kind of above the back of your throat (like I said, hard to explain!).  If I didn't laugh or breath really hard it was fine.  I am just going to have to get some strong gum to mask the "smeste", ya, I just made that up, of it.  I was hungry and did have a headache before I even started so that might not have helped.  My pee also looked like iced tea until this morning.  All night I could smeste the vitaminy taste and it grossed me out, but I better get used to it.  Ken also said my breath was horrid and today he told me I smelled like creamed corn.  ?I guess that is better than chemo... bald, fat, hairless??  W said I stunk too.  Wow, the perks of this journey are just endless aren't they?!  I bet you all are just so jealous!

On a side note, the other day I was going to get my tan on before I showered because it is so warm here and I thought I might as well get a head start before coming home.  All I had are an old pair of running boy undies and a - can't remember what it is called, I got them after I had my mastectomy because it was soft - bandeau!  It essentially only covers your boobings.  Anyways, I went to the trailer door in this beautiful outfit - don't forget I am 35 pounds overweight, and W looked at my as-white-as-your-computer-screen body and said, "Oh Mom!  Seriously!!!"  I did a real L.O. Freakin' L and ran behind the trailer before anyone else decided to pack up their vacation and leave.  I can just picture the teenage years... full of embarrassing moments.  I promise I won't tan topless until I have two boobs again bud! ;)

I have tomorrow as my day of rest, thank you Heavenly Father for the Sabbath day, and then I am off to the races Monday morning at 9am!

OH, I forgot to tell you that once I am done down here, I will go back home and go on a pill for of chemo for another 90 days I think he said.  Then I will have another check-up down here.  I think that is right.  I asked Ken if he would blog for me tonight and explain everything better than I did...  He looked at me with his big brown and green BEAUTIFUL eyes and said, "No."  If I messed up some info I apologize, you don't really know what happened anyways so I could tell you whatever I wanted to.

I am going to run.  We were going to watch a movie but everyone is snoring except me, so I might just crawl into bed as well.  I will keep you posted I promise. 

Like always, we can't thank you enough for your prayers and love.  We couldn't do this without all of you.  God bless you and we'll chat soon ok!!