Change

My plan was to post far more then I have been.  I think about my blog........basically everyday. I think about words that I want to say and things that I want to share constantly but it always seems that the day gets away from me. 

 I have really been struggling with being tired.  I am seriously ready for bed by 6pm.  It's a struggle to make it through bedtime routine with the kids, we do it, and I say that's a win every night, but it takes everything in me to get that 2nd or 3rd book read before they go to sleep.  So basically by the time I get the kids in bed I head to bed myself. 

Some of you that are close to me know this is a HUGE step backwards for me. A little over a year ago I changed my nutrition.  I cut out soda and put the best nutrition I could into my body.  This was the best thing I could have done for myself.  I had so much energy, I slept great, and I dropped 25lbs.  

Felt great and looked great.

  Although, I am still using that same nutrition daily it appears the chemo has  taken from me in 2 months what I worked for a year to have.  

I have dark circles under my eyes again, puffy face, and as I have already mentioned I am exhausted all the time!

To top all of that off...........I am gaining weight back and quickly.   I am currently blaming the steroids.  When I did chemo education (yep, you get a whole educational course on what to expect during chemo) they told me that I would gain 10-15lbs in water weight from the steroids but they made it seem like that would come off within a few days of the steroids leaving my body each week but it doesn't seem that is the case. 

 Now I am the first person to admit I have consumed more calories then I should during the days following chemo because again those damn steroids make you feel like you are STARVING.  My best friend refers to it as the steroid monster.  I will eat your food, and there food, and  my own food. 

 Even with the calories I am consuming during the few days following treatment I am still getting plenty of walking in at work and  I have been working really hard at consuming less once the steroid effect is gone, but yesterday I noticed the dreaded chin.  We all know it, the neck gets fatter and the fat under the chin starts to hang a little lower.  You have to stick the chin out even more during a selfie to avoid the.......

yeah, It's BACK. Maybe not to this extreme but it's on it's way! 

Friends,and my moms, and Rob keep telling me that I will loose it again.  To not worry about it right now.  It's hard to tell yourself not to worry about it when some days it feels like this will  never be over! 

AND 

lets just me honest........eventually I will not have any breasts and all I keep imagining is this huge belly sticking out and nothing to compensate.  I mean I can't be the only person who judges her weight based on how much belly she can see when looking straight down.  The boobs really help out with hiding the tummy.  This will not always be the case for me.  

I am not alone because this was on the internet....someone else thinks like me. 

All humor aside I am afraid to fight for myself again.  I have done it before.  After a really really hard break up from Blakelee's father.  I lost myself for a while.  I lost who I was.   I found myself but it took years.  Each year I gained another piece of me but I truly feel that a year and a half ago when I decided I wanted to be the healthiest I have ever been is when life really started taking flight again. I had a new passion for my kids and what I wanted to provide in there life and I had a new passion for myself and again I feel like something out of my control is interfering with this. 

 This new battle in my life, far surpassing any other I have faced, is changing me again.  It has taken away any control over my body.  

I guess the weight and puffy face and black circles are all indications that the chemo is working.  It's kickin my butt but IT'S WORKING and that's what I need right now.  I have fought for myself before and I have WON so I am going to work really hard at ignoring the silly things such as, tummy fat hanging out further then my boobs (or lack of) and try and tell myself that I will WIN again.  

This is going to change me more then I can even imagine.  It will flip my whole world upside down.  My body image, which I have struggled with most of my life, will truly be challenged and my only choice is to find the humor, and FIGURE IT OUT! 

Strictly because I have to end this post on a smile I have to share this picture with you all.  I have this crazy stubborn leg hair.  All summer I would forget to shave it, partially because it is right by my ankle bone,  no one has time for the mess that would come from cutting that area with a razor.  So pretty much I have lost my hair on my legs with the exception of a few, my arm pits, and my head...........BUT.........this hair keeps hanging out!  We are now friends and I will allow it to stick around as long as it would like.  

Hard Days

So I started this post on Monday, October 24th, but because of pure exhaustion I wasn't able to finish it.  I didn't want to delete though Because I feel it is important to share with everyone.  The tough days are so much tougher then I can even get out because I just don't have the energy.  So consider this post a work in progress.  Each bad day that I able to type a little more I will.   

The last few days have been so hard.  Maybe not any harder then the days following chemo before but they seemed so much worse.  As I lay hear and write tears just stream down my face.  I want to be strong all the time.  Tell myself to just let myself heal.  To sleep and lay when I need too but I can't get myself there.  I want to be the mom I strive to be, the good girlfriend, and the best friend who is there and present but on these "bad days" it feels like I fail at it all.  I can't even be strong because all I wanna do is cry.  Cry because I'm angry, angry at the fact that my kids are 11 and 6 and need me and I am sleeping.  Sad because I can't check in  with my friends to see how there day is because my body hurts to bad to even text.  I can't love on my boyfriend and show him how important he is because I am so wrapped up in  how awful I feel.

I know, I know, I am doing what I need to right now.  I am taking care of myself and getting healthy again so I can be the mom and girlfriend and friend I want to be.    That's so much easier said then done.  I fear that my kids are missing out because I am stuck in my bed.  What am I missing, what have they not been able to share with me or show me because I have been checked out for 3 days. 

When I found out I was pregnant at 18 I made a promise to myself that I would be the best mom I could be.  I would not use my age as an excuse for poor parenting.  I have done my best to always be there for my kids especially Boston who has been through one crazy season of life to the next with me.  I am the one who has taken her to events, dropped off and picked up,  I have been at school functions, and other events.  But in the last two months I have had to tell her I cant take her, I have had to miss a school event, and I haven't been present.  It doesn't seem fair. ............................................

Donations.........

A card that was left on my door step today with an amazing gift for me and the girls.
-anonymous 

The Future..........

 This is probably one of the hardest concepts for me too talk about, because frankly I am someone who just wants to do it on my own. Most of the time I can, but thinking about the future a little, but not too much I have decided it's time for me to address this.

When I was first diagnosed and my friends said they wanted to set up accounts and raise money for me I wanted to hide.  I WAS not going to ask for any donations.  I was going to figure this out on my own.  Now I have learned more about what I am looking at and how much time off work I will be taking.

I will be honest and say that I am doubled covered on insurance right now.  I have school district coverage and OHP.  Now with that said there are things that one or the other will not cover.  For example the PET scan was not covered by my OHP.  The other great thing about my insurance is that I renewed Oct. 1 so the deductible I had just met is gone.  I also had to sign up for a better plan then I have in the past with my district coverage for the obvious reasons.  Let me tell you, I am grateful for the amount my employer covers on my premium, it really is a lot, but now out of my already small pay check I will have over $200.00 taken out every month for the lower deductible on my insurance. 

So this is all a hit to the income.  To top that off my sick leave will be used up at the end of October.  That's only 2 months into my 9 month school year.  So everything after October will be unpaid time off.  I am looking at a whole lotta unpaid days.

 Family Medical Leave Act allows me 60 paid working days of unpaid time prior to being at risk for loosing my district insurance.  I'm not jumping that far ahead though.  I can't! 

The point of all of this honesty is not to say please give me money I deserve it and it's definitely not to say FEEL SORRY for me because that is the last thing I want at all.  I don't want to have people feel sorry for me.  I want to be lifted up and have positive energy and vibes around me at all times! 

The point of the honesty is to say....... I absolutely dislike asking for donations but I feel I have no other options.

We have set up accounts to help me go forward.  We have both a Go Fund Me and a Bank of America account that anyone can deposit money into at anytime, anonymously and it will be going to help pay the bills as needed.  

https://www.gofundme.com/2n46f4us

Bank of America Account Number:

Routing Number: 323070380

Account Number: 485013389391

Any money donated will not be touched until it is 100% necessary and when I make it through this and become a BREAST CANCER SURVIVOR one of my missions will be to pay it forward!

Other ways to donate:

My mom has had T-shirts made. The proceeds go straight into the accounts if your interested let me know and I can get you in contact with her, or email her at thebackporch5@hotmail.com. They can come in different colors.  She just went simple for now.

One of my best friends is making tamales.  All her proceeds are also going into my funds.  I can get you in contact with her if that is way you would like to donate, or her Name is Michelle
Lynn Orsborn on FB send her a PM.

 I have also received gift cards for every where and I love them, they will be sitting until we absolutely need them. 

Food donations are also welcome and I will eventually have someone set up a web based account to sign up for that.  Currently we are handling food because I have more good days then bad but come surgery and radiation we would love food donations. 

Prayers, right now are also the best donation ever and I will accept those day in and day out PLEASE!

Watching my kids and taking them out for some normalcy is also wildly acceptable as a donation to my family!

Please don't feel obligated to any donations and know that I am just grateful for the readers of this blog.

         

Medical update

So I figured it was about time for me to post a medical update.  That was one of my main reasons for starting the blog in the first place.  Keep my family who I don't see or talk to every day informed. 

 The tests/and results I have had done to date are:

Mammogram- This was my initial test right after my first visit way back in Aug. with my nurse practitioner.  The problem with the mammogram is that I have a rare breast cancer.  Only 1-5 diagnosed with breast cancer are diagnosed with  Inflammatory.  I also tend to believe that this number may be off.  I saw many doctors and they made it pretty clear that they don't really see this type.  Luckily, the doctors who mean the most, surgeon, oncologist, and radiation oncologist didn't seem to have the reaction the others did.  Anyway.......monogramming an inflammatory breast cancer doesn't really work because it's not a tumor, it is literally the whole breast.  So all that is seen on the mammogram is tissue.

I borrowed this little blurp from the following site ( https://www.cancer.gov/types/breast/ibc-fact-sheet) to better show how inflammatory forms: Inflammatory breast cancer is a rare and very aggressive disease in which cancer cells block lymph vessels in the skin of the breast. This type of breast cancer is called “inflammatory” because the breast often looks swollen and red, or inflamed.  So because it sits in the skin vs the ducts of my breast there really is nothing to see on the mammogram or ultra sound.
            

 Result-follow up with medication for mastitis and 2nd ultra sound.  

3 ultra sounds- again ultra sounds don't tell the radiologist much but I had 3 and you can read about that experience on my original post. 

            Result-sent for skin biopsy

Skin Biopsy- Now let me tell you this bad boy has yet to fully heal.  Tmstrangest thing I have ever seen.  I mean your body is suppose to heal, thats what it does.  Well because the tissue is so bad (thats my medical term )  they were unable to stitch the biopsy and they had to coterize it.  So a month later that whole is still working on closing up.  Yep, pretty nasty and just another reminder that my left breast is really,really, angry.

        Result- diagnosed with breast cancer!

MRI- Now let me tell you this........this one was my least favorite.  You literally have to lay in the MRI machine with your breasts dangling through these strange wholes.  Your on your tummy and you can't see anything.  For someone with over active anxiety and who attempts to be modest this was like worst case! Luckily we have pharmaceutical companies and they helped me out with a little anxiety med.  Didn't really help with the whole modesty thing but did what I had to do. 

                       Results- yep, the breast is just a lot-a tissue and you still have cancer. 

CAT Scan- This was the first scan I was able to stay clothed for.......YES! During this process if I can keep my close on I consider it a GREAT TEST!

                 Results- the cancer is localized  on my left side.  It is most definitely in lymph nodes but only on the left side!  No organs are effected. 

Echo Cardiogram-  This was to check my heart.  To make sure I could handle the following months of meds, surgery ect. 

              Results-My heart is great and able to take it all on.  But I mean we pretty much  knew that already. 

4th ultra sound- This was actually of my spleen (?) These body parts got my non medical brain baffled.  My CAT scan did show a cyst on my spleen.  The oncologist was fine with it being just a cyst but my surgeon wanted a better look.  This was my first Monday after chemo.   I couldn't eat or drink until the ultra sound and it was at 4:00pm.  Now my steroid eating habits these days are a completely different topic but let me tell you that Monday kicked my butt!

                     Results- Just a cyst, not a tumor, not cancer.

PET Scan- Apparently the CAT scan didn't go into my neck for the radiation oncologist to see the lymp nodes in my neck, so he ordered a PET scan.  My oncologist later apologized for me having to do another scan but said she was looking for chemo and he is looking for radiation needs.  I didn't mind.  I mean really I am at the point of "tell me when and where and you will have little questions asked as long as your getting this cancer out!"

                 Results- No surprises.  Lymph nodes are effected where we thought.  I only have one loan ranger hanging out more in the middle of my chest.  I suspect he wants to escape......wouldn't you if you had cancer in you.  Radiation oncologist and oncologist both believe we can get that one lonely lymph node with radiation and the others with surgery and radiation.

Bone Scan- got to leave my clothes on again......oh yeah! This was to check for cancer in my bones.  BONUS-Dr. Chloe Schelton read these results, so they have to be accurate :).  If you don't know about Dr. Chloe please refer to first post. 

                Results- Cancer is NOT in my bones.  I do have a bone spur on my rib and scoliosis still (had that since childhood).

BRAC Gene Genetic Testing- This was ordered because of my age and the fact that my mom does have some history of it in her family, and I have a sister in her 20's and two girls!  
             

  Results- Negative, I am not a carrier of the genetic gene.  Now this was a double edge sword for me.  I of course did not want my girls to be genetic carriers and have to make really tough choices when they are older, I also did't want my sister or mom to have any burden of this either.  But without it being genetic I just get to be considered a chosen one.  That part is super hard to wrap my head around.  I'm just lucky enough to have my body produce cancer at 30.  There is a reason for it, I am just not sure what it is yet.  

        Side note: even though I don't carry the BRAC gene.  My sister and girls will need to begin mammograms early.  25 is the age my oncologist is saying now but once my girls are that old whos to say the technology we will have for early detection. 

So I think that's all for the testing.  I have had 3 rounds of chemo now.  Fridays are my lucky days.  I get blood work done, I see my oncologist, and I get hooked up for poison, I mean meds. Friday after is always fine, Saturday I wake up okay but then my Saturday night I am typically in joint pain.  The joint pain extends from my jaw to my feet. Strangest thing ever.  Sunday I start coming off the steroids and  I am exhausted.  The strangest exhaustion ever.  If you haven't experienced it.  I recommend NOT :).  

 Sunday consists of my couch or bed and a blankie, oh and food.  Steroids still make sure I am taking in some food.  

Mondays are exhaustion again.  The nurses in the chemo room call it the droid drain and that's no joke! 

 Tuesday I start getting better but I am tired still, but I am tired all the time these days.  By Wednesday I am good to go about life.  I work, I be a mommy, and I attempt to throw in some friend action.  I get about 9 great days before the chemo hits me again right now.  I have not been overly nauseas, moments here and there, I have escaped the mouth sores they said I could get (knock on wood).  So I mean.....I am pretty much rockin this chemo thing right now. 

I have officially been "staged" ........3.  Oncologist assures me this is nothing to worry about because the chemo appears to be working and do to the nature of Inflammatory, unless it's in your origins, by the time it's found everyone is stage 3.   

Trying not to look  to deep into the future because that starts to ramp up the anxiety and I don't know for sure but I am guessing adding that to my body isn't going to help kill this cancer. 

Oncologist says there goal is to clear the cancer.  She can never make me any promises but as of now we have no reason to believe that we cant clear it!

Just Some Funnies that made me smile and hope they do you too.  Please excuse the language in two of them.  They really do portray how I feel some days, language and all.  

 First and foremost I am a teacher deep in heart and I want to teach everyone about this world.  What it looks like and how it feels and that IT'S OKAY!  It does SUCK and no one can lie about that but IT IS OKAY, and I am HAPPY to be me and ALIVE with great medicine and doctors and my girls and my family. 

Faith

Something I have been thinking a lot about is faith.  Much of my adult life has been about questioning faith.  What is it, do I have it, what is enough? 

I grew up in a house where you believed.  God was introduced but never fully discussed.  Grandma took us to Sunday school on occasion.  We attended church on holidays, yep we were one of "those families"  but that was the extent.  As a child that was fine but as an adult I need to decide what I believe.  I'm now in a position that I need strength, I need to believe that something so much bigger then myself is in control of this.

My question really starts at how do I really, whole heatedly, believe this when I am still a little angry. If there is a god why is there so much pain and suffering.  Obviously, I am not the first to be diagnosed with cancer but damn......I'm still angry with god.  I have dealt with my share of hardships in my short 12 years of adulthood.  Some brought on by myself some brought on by others and I had to make hard choices.  I have rebuilt my life more then once and I work really hard to build stability into my girls life.  So why now.....when I have a job I love, my girls and I have a routine and stability, and I finally have a man who would do anything for me, did god decide I was ready for this? 

With this in mind, what is this whole saying about "god only gives you what you can handle" I have grown to hate this saying in the last few weeks.  What about my kids......does he think they can handle  another crazy year with there mom.  Another year of trying to maintain normal and stable in the midst of chaos.    

Outside of all of these questions I do think he is presenting himself in my life.   I feel strength and after I made my first post I felt a weight lift off of my shoulders like........ "I'm going to be okay". I am going to have a rough year but I am going to be okay.   I had a piece about me.  What else could that have been except from all of the prayers. 

I also think he sends me, what I refer to as, little angles.  When I went in for chemo on Friday I was scared.  I had had yet another test last week and was worried about the results.   In came this lady, maybe in her 70's she was smiling so big and she said "hey....we have the same heir do!" She made my whole morning with one smile and hair comment.  My mom asked her if she likes to wear hats or wigs or scarves and she said she prefers to go bald.  Wow! She was amazing to me and my little angle for the morning.  when she walked in to receive her chemo I thought "please sit by me" and she did.  She told the nurse she snores and I did hear her snore when she fell asleep but I didn't care.  I just loved having her spirit next to me.  I later had a breast cancer survivor ask if she could give me a hug during brunch.  I believe to that we were meant to see each other that day. 

Even with these experiences I question so much.  Like, whats my next step with god? How do I move from anger to acceptance of his plan when I never really accepted him into my life prior to this anger. I'm not even sure I know how to pray.  I have never prayed on my own, EVER.  Do I attend church more, but how, when I feel so lousy every other Sunday.  How do I fully open up my heart and throw out all of the questions to just listen?  

I am so jealous of anyone who doesn't have questions about there faith.  Who know what it is and believes that god is there.  I welcome anyone to give me advice on this.  To help me release the questions and just accept what he has to offer.  

This is my Blakelee.  Always right there next to mommy on the good and the bad days.

 

WOW!

3,639

This is the number of views I had on my first post!  In the words of my daughter Blakelee ............

I could not be more grateful for the support!   when I woke up on Friday morning to so many comments and prayers, and people continuing to share my post I was blown away.  It was empowering and because of all of those I have a whole new strength.  People I haven't heard from or thought about in years reached out and shared my post or offered up prayer, SPEECHLESS is really all I can type about that and the emotions I experienced.    

In a day where life is fast and people rarely slow down to have face to face conversations.  When social media is the main stage for knowing what is going on in each others lives, it is liberating to be reminded that regardless of your relationship now the people who you once spent your time with really still hold a place for you in there heart.  

THANK YOU,  THANK YOU,  THANK YOU,  THANK YOU

The last week has been good,  I have felt good, I have gone to work, and I have finished emptying (some) moving boxes.  

YEP, prior to diagnosis my boyfriend, Rob,of three years and I had already started the process of purchasing a home together.  At diagnosis we were basically a week away from closing and really I needed something amazing to happen. This house was my amazing!  It is big enough for our 4 kids, his 2 boys and my 2 girls,  it was clean and needed no repairs.  A safe place for me to get healthy!

 So on top of chemo, kids, work, and feeling tired 24/7 we are working on making our new house a home.  This is my safety place.  A place where I don't have to wear a hat to hide my head, a place where I can touch things and not be anxious about germs, a place to not be alone anymore.(roughly 3 years of living in different towns and seeing each other ounce or twice a week was becoming draining.) Our prior places would not have allowed for him to be with me every night.  So I guess in some ways our purchase came at just the right time, and I believe that something, maybe god, had a little hand in making sure we had this place secured prior to diagnosis.

 I was grateful for our realtor prior to diagnosis but now I have a whole  new gratitude. She has provided me with a place that means much more to me then any other home, she has provided me a safe place to heal, and figure out who I am again.
(Name drop..........Morgan Allmand-Abarca with Burkley Realty, Central  Oregon)

Lets end this post with a little laugh.........
The other night I was trying on different wigs my friends and family have given me and Blakelee and Rob joined in. We had such a great moment together.  Who would have thought, wigs provide family bonding.

I love this man and his support. Not sure The long hair is his thing.

I thought this wasn't so bad,  Blakelee, Boston, and Rob did not agree.

Blakelee's Teacher, who we adore, gave us this one.  It's perfect, don't you think!

AGAIN, THANK YOU for following me. 

 For the Prayers, love, and Support I feel it all and it makes a difference in my life!