Hearing the birds

This morning seemed different. Usually, the day before treatment and the morning of, my anxiety gets to me. I tend to let myself fall into a depression. No matter what I tell myself, my emotions are a mess. I stress about the upcoming treatment, and how I don’t want to feel the way I will. I tend to talk my husband’s ear off about the same worries I have each time, the same ones. He sits patiently, listening to his blubbering wife cry about all the same things I do each time, and each time, I get through it.

Treatment is something that changes a person. You realize what is important in life, and what is not worth your time. Time is precious. Each moment and breath becomes more and more beautiful, more sentimental. Life itself seems to slow down.

I’m someone who tends to treat my stress and fears with distractions. Distractions that keep all my thoughts away, and let me not think about the trials coming my way. The more I keep myself distracted, the worse I feel. I feel like time is running away from me. That my precious time goes too quickly and I actually feel myself more stressed than before.

When I found out about my diagnosis, I went into a deep depression. Coming to terms with death is something scary. Death is all around us, but being told you are going to die, it’s terrifying. It’s a different fear than just knowing you could die anytime. It’s something that now becomes a very prominent thought in your mind. Everything you do, every person you are with, every ounce of your time, now revolves around, “how much time is this activity/person worth?”. You begin to realize that certain things become so precious to you. Friendships become stronger, family bonds have more meaning, the earth itself slows down.

During my depression, I decided to look for books that could help me, help me understand what I’m feeling and how to handle it. I’m going to say, I never found exactly what I was looking for. I know God is the one who ultimately calmed my nerves about my diagnosis. Without Him, I truly believe I would still be in the depression I was in before. I did, however, find a great book about time management. About how being present is more important than feeling perfect in today’s society.

“Present over Perfect” by Shauna Niequist, has greatly shown me that it’s ok not to be perfect. That being present is more rewarding than anything else. As someone who has always thought I needed to hit certain goals by certain life points. I’m happily surprised that I’m alright not being at those mile markers by where society has placed them. I don’t have an amazing job that pays super well and that I like to brag about. I don’t have an amazing new house that’s big enough to host the whole community for the holidays, I don’t drive the newest car with enough space to take all the neighborhood kids to a sports event. There’s so many mile markers I thought I would hit, and I’m perfectly fine not hitting them. I’m happy being present in my girls lives, that I now am a stay at home mommy and get to see all the new things my kids are learning, to be more present in their growing up and getting to be there for all the ouchies. I get to spend more time reflecting on myself, hearing the birds, listening to the rain, getting to appreciate the moments that passed me by.

Life tends to go 100 miles a minute, and I’m the worst about going full force ahead, even when my body begins to fail me. I truly believe that’s what why I did not notice the signs that my body was giving out. I was so tired and weak, and I just thought that was normal for people with kids. I just thought maybe I needed to give my body a break from school or the work out schedule I had myself on. So I stopped, and yet I still was so tired. The tiredness brought on crankiness. I was being short with my kids, my husband, my family and friends. It’s amazing, how when your body is trying to function and it can’t, how you act out. It’s tough, but worse, thinking it’s just you. That it’s all in your head. At least now, I know that I need to listen better, that my body can only take so much.

This morning, I woke up hearing the birds. The first thing I noticed was the smell of the fresh air, the birds singing their morning songs, the bright light of the sun peaking through my window. I had a moment to reflect, to realize how beautiful the world is, no matter what disasters are going on. The world keeps moving.

I’ve been watching the birds more and more. Having twin three year olds, pointing out all the birds and mimicking their chirps, also help me to notice them as well. They are so peaceful, going about their days, not noticing all the stress of the world. They fly from branch to branch, place to place, and do what their body is telling them, literally. They eat when they are hungry, poop when they need to, reproduce when they are called to. Everything they do, they do because their bodies are telling them.

I truly believe that today’s society is going too fast for us to really take in what is going on around us. We are running from place to place, flying at full force, not being able to slow down. Slowing down would mean that society is looking down upon us. Society today is all about, “what can you do to prove to your peers that you have the best, have done the best, and have the best to brag about”. I truly believe, it’s causing society to be disconnected. What does that really mean at the end? A nice obituary with a lot of nice titles? What about slowing down enough to have family and friends that were happy that you took the time to be in their lives? What about being there for your kids now, so they will be there for you in the future? What about having compassion for someone else, maybe someone you don’t even know? To be connected with the world, to actually BE!

My great grandmother passed away last week. Even though she was 98, and she had a great life and was ready to go, it’s still extremely difficult loosing a loved one. I’ve shed so many tears for this wonderful woman. She was so kind and loving, so compassionate for those around her. She always made sure that everyone else was happy and comfortable before she was. She was so strong. As I sat at her funeral, I prayed to God that I can be half the woman she was. That I can be as compassionate as her, in a world where compassion is hard to come by. That I can be as selfless, loving, strong, kind, and present as her. She was so loved by all those around her.

One thing thing that came to mind this morning was the birds. Her house use to have a bird clock that would sound a different bird noise at each hour. If I noticed it was close, I would wait and listen to the bird. I was so intrigued how beautiful each of their songs were. I would sit and watch the cardinals and robins hop along her porch rail, or fly up in her fence. My Grammy would just sit and watch with me, if she could. We would just watch them, going about their merry way. I know it was something small, but isn’t that life? Lots of small memories that make up a person’s life? People that meant the world to us, and showed us how to be a better person.

Life is so short. I’ve always known it was short, being told about world tragedys, someone passing away in a car wreck, being told that someone close was terminally ill. It hits you hard. You become aware of how quick life is in these moments. But then, the busyness of life takes over and your forget. Forget how fragile life is. My prayer for society, is that you become unplugged from life. Even if just for a moment. Put the phone down, close the laptop, and just BE. Stop, for just a moment, and hear the birds. Listen to those around you, be present in your life, not rushing through it. Don’t wait until life is at the end, to realize how little you really lived.

To my girls….

Clara and Ellie,

I have so much I want to say to you that you just won’t understand yet. You just turned 3 and I still can’t believe you are even that old already. As your mom, there is so much I want to give you. If I could give you the world I would. I am such a mama bear around you both and I will always be there for you.

This year has been tough for our family,and it’s difficult for me to explain everything that’s happening. This last year when you turned 2, I began having health issues that then it turned into finding out I had cancer. Most of your second year I spent in and out of the hospital and going to and from doctors appointments. I never in my wildest dreams thought I would be the sick mom… the one who…. just couldn’t.

I’ve always thought I would try to be the “cool” mom, the one who gets to take you to the best places, or go try the neatest foods. The one who always sets up play dates with your best friends and teaches you the neatest tricks. There’s so much I want to do with you, and yet here I am, stuck in bed or in a chair, watching you grow up from afar.

It’s so difficult to have to tell you no to things like being held when you have an ouchie because I have cords hanging off my chest that could cause me and you damage if pulled on. Or to tell you that we can’t go to the park today because it’s too cold at 55 degrees when all the other parents are excited to take their kids out because it’s finally so warm, but to me it’s extremely painful. So instead I wrap up in a blanket and let you play outside in the backyard while my hands and feet go numb and cause me pain. It’s difficult when you ask me to come chase you or throw you up in the air when I physically cannot, and even standing for a few minutes is an accomplishment. It’s so difficult trying to be the mom I want to be for you and knowing I’m failing miserably at it, and there’s nothing I can do about it.

Even so….

I am thankful

Thankful for the moments I did get to spend with you. For all the little kisses I get each day and the hugs before bedtime. For each moment I hear you laughing your full belly laugh just because something normal happened and you saw it in a totally hilarious way. For all the times you came up and were so excited about something you couldn’t even form words or sentences so I hard to start guessing what you were telling me. For each tear you shed and wanted mommy to brush it away and make it better. I am thankful for each and every moment I DO get to spend with you.

As tough as life is and all the crap that has been thrown our way…. I am so thankful to have you.

I don’t know what I would do without you both. Even though cancer is difficult, you make life so much more worth it throughout all the pain. Without the pain I wouldn’t get to see the joy in each of these little moments.

I know there are days I loose sight of those moments, but you are always there to remind me what life is about.

My prayer is that you always keep your joyfulness and your love of life. That you never grow up and always be the little wilder things that you are. Never stop dreaming – and always be yourself in each decision.

I hope that one day you understand how you mean to me and how much I love you.

Love always, your Mama.

Listen

During my treatment I’ve had a lot of time to sit in silence, reflecting on myself and what I want for my future. Never before have I been so focused on what God wants from my life.

Graduating from High School, I saw myself becoming a teacher. Being able to work with children was what I loved to do and it felt so rewarding doing it. After some time in college, I decided that I had chosen this path based on what I had done in the past and I wanted to experience other career choices before committing to one. My favorite passion has been photography. Being able to capture moments in people’s lives and stop just a second of their life so they can look back on that glimpse for many years to come.

Before I found out about my diagnoses, I had thought I would end up doing photography fulltime one day, and to make that my main career choice. Unfortunately, with my surgery, it would make things very difficult for me to do this as a fulltime career. I still love my photography and hope to pick it back up after treatment and continue to do what I love.

Once I found out about my Colon Cancer and Lynch Syndrome, I felt like it was God’s wake up call to get me on the path that He wants for me, not one I picked for myself. Getting this life changing information really made me take a step back and think about life. What does God want from me? What is my purpose? Am I doing this all right?

There are so many questions I had, and so many I still have. One thing you should know about myself is, I love to plan. I schedule everything out. Whether it be date night with my husband, or just the day and time to go grocery shopping. I stick to my schedule fairly strictly and hate veering off track too much. It’s something I’ve always seen as a good thing, but I feel now, that God is telling me to enjoy life more, stop planning every moment, and just BE IN THE MOMENT.

I’ve felt God’s hand on my heart in some very serious things that I can’t discuss in details at this time, but I am hoping He will guide me and my family to the right decisions when the time comes and we will be able to share that excitement with all of you one day soon. The main thing God has been leading me is to not making everything about what the world wants me to be, but what God wants me to be. I’ve sat and tried to make sure that I do everything I can “by the book” on what society thinks our lives should look like. Instead, God has been leading me away from that and telling me that it’s ok! It’s ok not to know what is going to happen or where I will be in a few weeks, months, or years. It’s alright not to know what job I will have or where we will be living. To just let go of what I “thought” my life would look like, and accept that the change and unknown is what life is about!

Life is so exciting! Every morning, getting to wake up and take a breath of air. Hearing my girls run into our room to scream that it’s time to get up (not always my favorite part of my day – but it means I’m alive), making breakfast for the family, planning out our day and talking about what exciting things we want to do together. I never know what the day will bring or what life will throw at me next, but I know that I am excited to see what it brings when it does.

One thing that has been heavy on my heart is finding a place to volunteer, to make a difference in the community. I am hoping that once I am done with the chemo portion of my treatment, that I will be able to find a organization or community/church based group that I can get involved with and volunteer my time. I have just felt God telling me that this is what He wants me to do with the time I have left. I have no idea what kind of community work He wants, but I’m praying that He will open a door for me and show me exactly what He wants and where He wants me to be.

The last thing that God has been working on with me, is getting involved in a church. Mark and I were looking for a new church when we found out my news, but since then have not been able to go very often to look at churches. The weekend closest to treatment I am still very ill and the weekend after that I tend to just be worn out… It’s been difficult for us to find a new church home, but we pray that we will find something soon.

I have been feeling strongly God is calling me back to small groups. It’s something I was never fond of in my “younger years” but I feel like it’s what I need. I would love to find a great group to grow together in God’s word and help each other along the way.

There’s so many new and exciting things going on, it’s hard not to feel overwhelmed by all the changes. I just keep praying that God will open the right doors at the right time and have our hearts ready for whatever He may bring. It’s easy to get caught up in all that life has and loose sight of what God wants…. It’s much easier said than done as well. Even though my life has “slowed down”, I feel like I want to cram as much as I can into the little time I do feel good to make sure my girls get the most out of their time with their mommy, instead of just enjoying the time we have playing together at home.

Please continue praying for my health as I have started treatment again from my small break to recover from some side effects I was having from treatment. I am half way through chemo treatment and hope that the side effects will stay at bay… Thank you again for all the prayers and support. My family is truly blessed to have so many amazing people surrounding us during this crazy time in our lives. We love you all!


I want to end my blog with a song that has been on my heart since my diagnosis…. It’s an older song but hopefully it speaks to you the way it has spoken to me lately.

https://www.youtube.com/watch?v=8FlIchSJoOA


I Cry

*Before I write this, I want to point out I am no poet. This was not meant to be a poem, and I will probably make a lot of grammatical errors… this is just how I wrote what I was going through…. I do not know why I wrote it like this, but it was how I felt that night. So here you go…*

Many people experience pain, whether it be emotional or physical, we have all been there in some way. I have experienced both in my life, physical being more prominent.

Have you ever been in so much pain that you thought you may not make it? I have, twice. There were two times I thought for sure I would not make it to see the next day. Once was after having my children and experiencing hemorrhaging, then being told by a doctor that you are critical. The other was after my total colectomy, I was in such severe pain I thought for sure something was wrong, this time I was wrong, it was not life threatening, but instead a mistake by a nurse.

Lately, my pain has been from my treatment. It does not feel life threatening by any means, but I am in so much pain it’s hard to stay positive. It’s difficult to see the light at the end of the tunnel. I know it’s there, I just can’t see it.

Day after day, week after week, I go into treatment knowing I am going to be worse off when I leave. Knowing that all the energy I had finally regained to feel like myself would be gone, all the happiness just taken out of me in a single moment. It’s tough to convince yourself that it’s worth it.

I wrote this down after my first treatment. I never imagined it would be like this. I stayed up all night crying in pain, knowing this was only my first of twelve… it was difficult to wrap my brain around. It’s difficult for me to share this… these are all the thoughts that crossed my mind that night. I tried to write it in a way that people could understand, that somehow, someone out there would be able to understand even a small amount of the pain I felt. So…. here it goes.

——————————————————————————————————————

I Cry

Pain and suffering are everywhere I see.
People hurting, crying, wanting to be free.
All the fear I see in their eyes,
All the hurting from inside.

I want to take it all away,
I want to help in every way.
I tell them to be strong.
I tell them to go on.

They try to hide from those around,
The pain that is too strong for just one
Sometimes they just can't go on,
Sometimes they just want it to be done.

Praying everyday
Trying to find a way.
Sometimes the battle is won,
But some never see the dawn.

I want to take their pain
And throw it all away.
I wish the world was beautiful,
The way it was meant to be.

Beauty without pain,
Yet here, I see the same.

I see a child, mother, sister, father, brother,
All the pain inside
Never ceasing
Never stopping

Just praying to see another day.
I see all of these things, and wish them all away

No more pain.
No more suffering.
Just love and happiness
All of my days.

I watch as those around
Pain that knows no bounds.

I cry.
I weep.
Tears steaming down my face
Sobbing still, until I wake.

I can't stop this feeling,
I just want there to be healing.
Healing for those that hurt.
Healing for those with worth.

I want to take it all away.
Wipe every tear shed from their face.
Every child who doesn't understand.
Every parent who wishes for change.
Every person who does what they can.

For every person that's told their dying,
And does their best to hide, even if they're lying.
Putting on a face that says they're O.K.
Hiding behind comments, that push them all away.

Far away, so they won't share the pain.
Keep them in the dark,
Hide it from the world.
The pain inside
That eats them alive.

Cry
I cry when I can't take anymore.
Throwing jokes and making noise
Not dealing with it,
Don't let it in.

Pain is a trick,
As soon as you think
You have it beat,
It changes the game.

A game I cannot hide
Something deep from inside.

Pain is the enemy
Taking forms I cannot see.
It hides it face so well
That you widely open the door to hell

Pain knows you well
Pain knows how to tell
How to hit you from the side
While you go on like it's fine

You can't share it with anyone
It is your yours alone to carry.
So you put on a smile,
Play it's game.
While deep inside
It's killing you alive.

There is not light to help,
Only darkness ahead.
Never ceasing
Never slowing

You've succumb
You're defeated
It has won.

You loose yourself
In the darkness
Never ending pain
You can't get up again

There is nothing left
No more to give
No where to go

You have battle scars
You will never loose them
Every mirror reminds you
All the pain
All the agony

Scars that tell you
You have failed
Scars that are left behind
To remind you
That you have nothing left to give.

It's killing me
I know
Each drug I take
Each medicine, each pill.
Slowly, I loose sight of what is real

Every needle that they poke
Takes its toll each time
This burden,
Weighing me down.
Pushing me farther into the abyss.

I'm not sure how long
I can hold on.

Pain is Pain
There is no more hiding
Distracting, or covering.

Just open up,
You'll see.
There is someone waiting there
Just to set you free.

To be there with you
Holding your hand
To say kind words
Whenever you feel blue
To stay with you,
Even in the silence.

Cry your tears of pain
Cry them all away.
Don't hold them in,
Don't let them win.

You don't have to be strong
You don't have to hold on.

Cry them out,
Give a shout.
Show the world
You don't give a shit.
You be you,
and that's it!

If you just can't take it
There's only one thing left to do
Cry...
There is someone waiting for you.

Rainbow Glasses

Cancer…. a word no one wants to hear. A word that has affected almost everyone in some way or another. Not only is it scary to hear a loved one has cancer, but terrifying to hear you personally have it.

I can’t describe how it completely turned my life upside down. I instantly wanted to change me… make better choices, eat healthier, be happier, really invest in the little moments. My question is why? Why wait until you hear you could die before you change?

Our lives are so affected by death we sometimes become numb to the fact that life is a gift. Each morning we wake up is a present we should celebrate! Not moan and complain, not hurt others for personal gain, not drag our feet to a job we hate or wish we were in a different place.

Instead, why not be happy with where you are, the person you have become, the breath you get to take, meaning you get a moment longer to be alive and make the choices you have. It always seems to take some life changing moment for people to turn around and really change who they are, chance their identity.

For me, I personally have been fighting battles of my own. I am a pessimistic person. I don’t mean to be, but I’m always worrying, complaining, or frantically acting out. Instead, I should be more care-free, and be happy with where I am and who I am with.

The other day, I was driving with my girls, and I looked out my window and everything looked so beautiful. Each blade of grass, cloud in the sky, or car driving by, all seemed to be colored in rainbows. I had to take a second to realize, maybe this is what God intended. To see the rainbows instead of the clouds, to look beyond what is happening on the surface, and look much deeper!

Side note, I wasn’t have any visions, or weird out of this world moments. I happened to have some new polarized glasses I got for Christmas and they tend to glare or give a tint in rainbow colors.

Even though, yes, it is totally the glasses that were letting me see this. I’ve come to realize that maybe this is how everyone was meant to see… It’s so easy to get wrapped up in our busy lives, to be rushing from one thing to the next, to not notice that maybe we are hurting ourselves or others.

Instead, we should strive to see the rainbows in the storms. See the many colors behind the person. Have compassions for those around us, and take a moment to stop and let it soak in.

My life has been a constant struggle of planning…. and trying to get where I think I should be. Now, all I want, is to be present in each moment, to take full advantage of the life I have. To never stop seeing the rainbows.

My Medical Journey Part I: Doctor Nightmares

So here it is, my medical story – it’s not pretty, but I’m hoping by putting mine out there, maybe I can help others somehow.

I’ve been with the same doctor since before I can remember. My grandma, mom and dad all went to Dr. Darla Rivera at Primary Care Associates in Wichita, KS, and I had only grown up knowing this one doctor. My experiences were not like my families, they have good memories before she became the doctor from hell. She helped my family through all of their medical needs and helped my dad out in more ways than one, specifically being completely understanding with his colon cancer.

My memories of going to the doctor were not so peachy. She talked quick…. very quick…. I just thought that was her (which I think some of it is…) but she also had too many patients, so this was her way to throw a whole bunch of information at you at once so she could move onto the next patient.

Her wait time because of this was incredibly long, I had to wait 3 hours just to see her… I waited so long I fell asleep in one of the rooms because no one had checked on me for an hour to even explain what the wait was, when they finally came in, it was to inform me to move to another room (which was literally across the hall, so I have no idea why they did this) where I waited another 45 mins.

This particular day I had an appointment for 3pm, so when she finally saw me at 6pm (office was to close at 5pm) she was definitely not in the mood to be helpful at all. I had two issues from a trip my family had just taken. My knee and poison ivy running all up my back. When she walked in, I informed her of the first, my knee. It had popped out of socket at least 3 times during our hiking trip and it was extremely painful. She took a quick look and said it was runners knee and I needed physical therapy. Informing me she had some therapy pamphlets I could practice at home for now and some information on good physical therapists she was going to grab and be right back in.

After waiting for about 15 mins the nurse assistant comes in and hands me the paper work and tells me I’m good to go. When I ask when the doctor was going to return she rudely told me she was not. I informed her that I had more to talk about and that she said she would be back in, she angry told me the doctor had other patients with larger issues than mine and she WOULD NOT be returning. I blurted out about my poison ivy and she quickly left and said she was inform her.

I then hear them talking in the hall outside my room where my doctor writes a prescription (without even looking at it) and then gives it to the nurse to hand to me. When I was given it, I was too tired and mad to say anything and left extremely upset.

This was the moment I should have looked for a new doctor, but I didn’t. I had been with my doctor all my life and my family had never had an incident… so maybe she was having a bad day, who was I to say that it wasn’t a one off situation.

From then on out I ONLY saw the PA Dr. Charlene Bui. I’m not going to life, I liked seeing her and I would have switched to her if I could. Unfortunately, I told myself this was good enough to stay at the same doctors for now.

Roll forward almost 4 years, got married, had my twin girls, Mark and I were planning our lives out and deciding we were going to probably move out of Wichita, I decided to stick it out with my doctor until after we moved. I didn’t want to find a doctor I loved and then have to leave. It would be horrible.

Short side trail…. when I had my twin girls, hemorrhaging was high risk with twins or multiples delivered naturally… I was not informed this during my time with my OBGYN (who I won’t be seeing anymore for a number of reasons – but that’s a WHOLE different story). After having them, I did have hemorrhaging, which lead to my hemoglobin being at a 5.4… another OBGYN had to talk to me about getting an emergency blood transfusion because if I didn’t I risked dying. When you are low on blood, just pushed out babies, and obviously drugged up, you aren’t thinking clearly… so after finally being yelled at by a nurse and in tears I finally got a blood transfusion and I almost instantly felt much better.

I can’t tell you how horrible it was to not have enough strength in my arms to even hold my brand new little baby girls, I can’t tell you it was horrible to realize my body was on survival mode and I wasn’t able to breast feed while nurses told me I wasn’t trying hard enough…

My medical journey was not a pretty site…. I’ve been through the worst of the worst… but I’m alive.

Finally, we get to where it gets really bad. The fall of 2017 I decided I was going to go back to school to get a bachelors in Digital Media. Photography has been my life up until that point and I decided it was time I pursue what I want. I was working full time, taking 40 hours of course work at school, and trying to have enough energy to come home to my kiddos and give them time as well. It was a rough fall. Through it all, I came out with straight As and on the honors roll. It was a huge accomplishment for me!

I felt like I could conquer the world, but decided that I would wait during the spring as I was running low on energy and my girls were turning 2 and we were planning a big trip to Disney World in March, so I put my schooling on hold. (Very glad I did though).

Things felt different. Even since having my girls, I was having 2 menstrual cycles a month, my energy was almost absent, and I was having horrible headaches that even medicine wasn’t helping. I was beginning to chew on ice… almost constantly, and I was really attracted to cleaner smells or markers… I went through a phase where I was cleaning the whole house and the classroom I was in… I just thought I really was going through a weird cleaning phase! haha!

We went on our trip to Disney World and it was a blast… it was full of fun and stressful moments, but definitely something we would never forget. We had planned a side trip to St Augustine, Florida, and I was feeling pretty relaxed. I had my moments where I felt really low on energy, but I thought I was just out of shape. My mom and I decided we would go up the lighthouse there in St. Augustine… while on the way to the top I had to stop multiple times. Mark and I had been there on our honey moon, and I knew it was difficult, but nothing like I was feeling now. Once I got to the top I blacked out. Blacking out on top of a 165 ft. lighthouse with a rail that came up to my stomach, I was not about to fall off this thing. I sat down and put my head in my lap and realized there was something physically wrong with me. My family and I agreed, the moment I got home I would contact my doctor.

As I said earlier, I decided they would probably just say I was out of shape, my heart had been racing if I even stood up too long… so I knew something physically was our of wack. I saw the PA and she informed me I should get some blood work done just to see what was going on. They asked if there was anything else they should screen for and I informed them my grandpa was a diabetic. Once I got the bloodwork done they said they would call within a few days.

I went to my friends house to hang out with her and catch up, when over there I received a call from the PA’s nurse informing me that my hemoglobin was at a 5.2 and I should wait to hear further instructions from them on what to do. I waited until about 4:30 and decided I should probably drive home.

As soon as I left, the PA called and said she had set up a blood transfusion for me tomorrow and that I should get on birth control pills immediately to regulate my cycle. Within about 15 mins of that I received a call from my Doctor’s nurse frantically telling me that they were trying to set up an emergency blood transfusion tonight at the hospital and they would have a bed waiting at the emergency room to get me in. The told me they would call me back with specific details.

All night I waited for a call.. and nothing. I waited until 10am the next day and still nothing. So I thought O.K., I still have the blood transfusion today, so I just need to find out what time. At this point I can tell something changed… I couldn’t get out of bed, my head my screaming, and I could barely lift my head up to call my doctor. I called and left a message and waited until 11AM and thought, alright, they are going to go on lunch soon, I am in bad shape and need to know what to do!

I called both my Doctor and PA and never got an answer. Instead, I got a rude message through the Portal they have explaining I needed to stop panicking and just wait. That I was overreacting and needed to stop bothering them. I sent a very rude message back informing them all I had been told on top of the fact that I was in bad shape. Never once did I receive a call or message from them about what to do. Finally, I had my husband call the transfusion center to find out my doctor last night had cancelled my transfusion, but they informed me to check into the emergency room.

Once my husband drove me there I stumble into the ER and tell them what is going on. The nurse could tell I was in bad shape and grabbed me a wheel chair and told me I was completely white. Once in the ER they took my blood to check my levels. The Resident Doctor chipperly came in and says… “OK! We got it back! Guess what it is? Just guess!” “5.1”, I barely said, as my husband guessed 4.9… “4.6! It’s low! I don’t know how you are still awake right now! Most people with that low would have passed out by now!” Well that is just fantastic… dropped almost a whole level in one night. Glad I came in.

I got 1 blood transfusion and 1 iron bag at the hospital. Ended up getting 3 more doses of iron throughout the next few days but was released from the hospital to recover at home. The day I got released I was looking for a new doctor. As I am looking I receive a message through the Portal (2 days after my original message) telling me I was borderline diabetic and needed to be put on a strict diet and needed to come in immediately. Yeah… not going to happen.

During this time, my OBGYN got my on an IUD to regulate my cycles and we thought that should help in my hemoglobin staying regulated since we assumed that was probably where it all began. Plus, since I had not been checked again by my OBGYN or Primary Doctor, I never knew if my hemoglobin ever rose in the 2 years since my original drop after my girls.

After doing my research and finding a doctor close by at Andover Medical Facility I decided to set up an appointment. I met with Doctor Kari Clouse and it completely changed my life. I informed her all I went through and showed her my results from the message through the Portal from my old doctor. She informed me I wasn’t even close to being diabetic… so now idea where she was getting that information.

She informed me to let her know if I felt sick again since my hemoglobin was only up to a 9 she wanted me to do more iron but would give it a few weeks if I wanted to. I wanted to see what would happen since the iron takes longer to really boost your levels and I was only a week out of the hospital.

2 months later I was contacting her telling her I was having symptoms again. I came in and my level was at 6.4. Something was definitely wrong. She set me up with 7 more doses of iron and my hemoglobin rose back up to a 10.2. After about a week I still felt like something was wrong, so we did a stool sample and we found blood. I had to have a colonoscopy right away. I was pretty nervous going in, since my dad had colon cancer, I just felt like I was going to as well.

It’s hard to explain, but when I woke up from my colonoscopy and the doctor was sitting there telling me I had a tumor and it was cancerous, I didn’t react. It was almost still like a dream. I had been having a feeling it was going to be that, but once we got home I broke down. I knew nothing was going to be the same.

I’m going to stop there because as you can see my story is extremely long, there were many factors that went into me finding out I had cancer. The main reason I go into that many details is because had I just switched doctors when I had my original problem, I may have caught this much sooner. I now have a fantastic doctor who listens to my problems and who makes sure I’m cared for 100%. Never go against what your brain is telling you. If you have red flags about a doctor, switch! It’s not worth waiting and getting to where I got. Make sure you have a doctor who is always looking out for your best! No matter what!

Support

Support. This word has been heavy on my heart since my diagnosis. When I first found out I was 26 and had colon cancer, my life got turned upside down. Every plan I had was totally smashed, every dream was erased. I didn’t know what I was going to do and how I was going to go about living.

Everything changed. Physically, mentally, and emotionally…. it’s hard to wrap my head around everything even now.

One thing I was not prepared for was the support I received from the first day I announced it. I instantly received love and support from all those around me. Not just those I knew, but those who know my family. Least to say, I was completely overwhelmed!

I received cards and gifts from the Prayer Warriors at my grandparents church, my old high school basketball coach contacted my family and set up a Go Fund Me page to help with medical bills for my surgery and diagnosis, my mother set up a Food Train page because we had so many people contact us about wanting to send a meal, we received gift cards to so many places for food and groceries, Andover High School contacted my mother and informed her they wanted to do Beanies and Baseball caps for Bri as a fundraised at the school, the Student Council (STUCCO) made me the most beautiful blanket (that has it’s own story along with it…), the Honors Society wrote me a card and gave me gift cards, not including all the families and co-workers from my job and past jobs that contacted me and donated their time and money, as well as friends and family that had done SOOO much to help out…. This is just a few of the thing I have received over the last few months.

I write all this to show all the support I was not prepared for. I personally have never been one to take, or accept anything I didn’t work for. I feel guilty when I accept items that I did not earn. So, having been given so much love and support from everyone really did overwhelm me.

I personally am the WORST at writing thank you notes, or sending recognition on social media about it, because I personally feel guilty for being given all this… With that being said, I have personally cried over everything that has been given to me and my family. I honestly keep every card and read them over when I feel down. Never will I forget all that has been given to us, and hopefully one day I can repay the favor and support others in need.

THANK YOU…. it seems to little to me…. it’s hard to express my love and sincerity to those who have given so much! Your kindness and support shown will never be forgotten.

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Just yesterday, I was in contact with my cousin Hadassah. Right now, she is overseas on the World Race doing missions. She has always been like a sister to me, and I miss her dearly everyday. When I was diagnosed, it hit me extremely hard… one of the first people I wanted to tell was her, and yet I couldn’t be there to tell her in person… it was extremely difficult. She had just left in July, and I was diagnosed in August, and she will be overseas until June of this year. Dealing with all this and knowing, not only was she gone for one of the biggest life changing events for me, personally, but also she would be gone through my surgery and almost my entire treatment. It was difficult for me to wrap my head around.

She had barely been gone and here I had to send her a message telling her I had cancer. It was difficult, because I wanted this year to be about supporting her through her mission and something that would change her life forever. Instead, I had to tell her I have a horrible disease and genetic mutation. I initially waited to tell her because she had just left, I did not want to take away from what she was doing overseas. It took me a while to be able to contact and tell her, I cried the whole time because it was my way of admitting this was real.

It’s been a few months since that first message, and since then I have tried to keep her up to date as best as possible. Every time we talk, she would tell me that it’s so hard for her to wrap her head around since she can’t be there to support me in person. The last thing I want her thinking about it is how to support me! I wanted to support her as much as I could this year as she traveled, met new people, explored exciting new places and spread the love of Christ. Instead, she is trying to support me through this.

Hadassah keeps a blog through the World Race and then updates it throughout her trip. Yesterday, she posted a new one called “The Lord told me to cut my hair”. This is the blog if you want to read it –

https://hadassahtillotson.theworldrace.org/post/the-lord-told-me-to-cut-my-hair

My hair had been falling out more and more throughout my treatment. Even though I am not suppose to loose my hair entirely, it will break and fall out, as the doctors put it… “thinning out” throughout chemo. It was hard to handle the first time I pulled out a good chunk of hair, and seeing it all over my house and on my clothes started to get to me. I finally realized I needed to cut it when I pulled my hair back and it was completely fuzzy on top with all the breakage from my hair being so weak.. So I got it cut. Shorter than I would like (and I may need to go shorter as it is still breaking), but at least I don’t notice it as much.

As I opened her blog and began reading, I realized she not only cut her hair but it cut it short! She had very long hair, longer than mine was… we had talked about her cutting her hair before her trip and she said loved her long hair… plus she did a great job styling it, so she wanted to keep it long throughout the race. So seeing she cut her hair completely took me back…. as I read why she did it, I began to cry…more like complete breakdown sobbing!

I was sitting with my girls at home and had to go shut myself in my room because I could not contain my emotions… She had cut her hair to support me! Little me! I knew how much her long hair meant to her, and instead, she cut it to show support to me since she is so far away. I can’t even begin to tell you how much it meant to me.

As I sat crying I began to text her and she instantly facetimes with me. Not only is being able to facetime with her a huge treat, but here I was in the middle of my breakdown… snot and tear streaming down my face, paper towel across my nose (with toddlers, the Kleenexes go missing a lot, and I grabbed the first thing I could find), face red and puffy from crying, as I began to try to tell her how much it meant to me.

We cried and talked together for awhile…. I love her so much…. I can still barely type this through my tears now. She is a wonderful, amazing, God driven, kind hearted, compassionate, loving woman. I look up to her amazing strength and strive to be just a portion of the woman she has become. I am so blessed to have her in my life.

Love you so much Dassa!

Change

Growing up as me as awkward… I was actually kinda a bully from what my parents told me when I was little (I see where my kids may get it from) but I was also very head strong and shy. It didn’t make a lot of sense… but it was me.

My love for horses, photography, and basketball is what got me through school. I loved to take trips with my family and friends and be able to do all three! Throughout high school I had friends whom I connected with but lost touch with afterwards. Some of it was my fault and some was just connections being made elsewhere. In the end it’s showed me to just be me and I will find the right friends who support me and love me through all the crap I put out.

I’m not always the easiest to get along with… I’m going to be upfront about that. Through all the valleys and trials I have been through I’ve grown cold to others. It’s not something I am proud of, but I feel like our society pushes for that. It tells you to be cold, be insincere, be pushy and rude.

Since I’ve been staying home, I’ve been praying to God a lot about what I need to change, how I need to act, and what I need to do. Each time I come back to me… how to change my look on life. How to treat people better, even if they are treating me horribly, to know that even though I’m going through my own personal trials in life, they are going through theirs too, and sometimes you just can’t handle it and it shows.

A church friend of mine posttest about GRACE. Grace is courteous good will, to do honor or credit to someone/something by one’s own will. Showing others kindness by ones own actions, not necessarily by a treatment to you received and then reacting with kindness, but by being kind in the first place, not matter how you are being treated.

Just yesterday as I was going to begin my chemo treatment, I was being treated poorly by someone there. I was informed to go speak with this person and when I did I was treated poorly and informed that I obviously did not know what I was doing. I wanted to snip, to lash out. I was hurt by her actions and it made me feel incompetent. Instead I pushed it back and didn’t say anything but gave her my number so I could begin treatment.

I wanted to inform her that even though she was having a bad day, so was I. No one at the cancer center wants to be there. No one willingly gets up in the morning looking forward to toxins being pushed into their body. No one wants to come in, knowing they will leave ill for the next few days or weeks. Even though I wanted to tell her all this, I walked away knowing that obviously she was going through her own battles right now.

When I arrived home and saw my friend post about Grace… it blew me away. Instead of just walking away I should have shown that person extra kindness, and been sincere. I felt like God was speaking to me, telling me that I needed to always be in check about my own actions. Even though I type all this, I know that I will still fail, I will still fall short.

James 4:6 says “But he gives us more grace. That is why Scripture says: ‘God opposes the proud but shows favor to the humble.” NIV

I wanted to share my thoughts on that because it has stood out to me. It’s been heavy on my heart the last few days. Hopefully it will speak to someone else as it has spoken to me.

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Just a update on my last chemo treatment…. I have been pretty tired from this one. It hit me pretty hard yesterday and I am in bed today, doubt I will get out of bed for much. Decided to take a picture of me today to show what I look like. I have been loosing my hair slowly… my type of chemo thins my hair out and causes it to be brittle. So as it falls out it breaks as well and causes it to become fuzzy looking. This weekend I decided enough was enough and cut my hair. I am still getting use to the short appearance and hopefully will not need to cut it shorter, but I am taking it day by day.

As some of you may know, my treatment has a pump that stays attached to me for 48 hours, I literally dread going in for it. The sound and smell literally repulse me and I feel ill even thinking about it. I wouldn’t wish this on my worst enemy. This week my oncologist and I talked about some of my symptoms that were causing my issues and we are lowering my dose of the 5FU from the pump to see if that will help. If some of the fixes we are trying do not begin helping they said I could be hospitalized if symptoms get worse. So I have been praying it does not come to that.

I also get what is called Neuropathy with my treatment, it causes nerve loss throughout my body. Specifically in my hands and feet, but can cause elsewhere. I have been feeling more in my legs lately and that makes me pretty nervous as it should be temporary affects, but it can cause long term.issues as well. Cold sensitivity is also an issue, and especially during the winter it can hurt fairly bad. I have been able to deal with most of it, but my throat definitely causes an issue when drinking. I have to have lukewarm water, and honestly… who wants to drink lukewarm water? Right? Lastly I have steroids that are given to me to help fight all the toxins in my body and they cause me to be red and sweaty… so I decided to take a picture of what I look like during treatments. I told you I was going to show the good, bad and the UGLY! HAHA! Jokes on your for still reading this!

Anyways, I want to say thanks for reading. I will try to post more this way instead of bombarding everyone with long stories on Facebook.

So here I am! In bed, messy hair, no shower, red all over, Fanny pack, pump attached, me. This is what I look like for 2 days and then I get so sick I am in bed nauseous for 2-3 more…. the nausea hits me right away when I get home, but usually I can hold it off until after my pump is off, then it hits me again. So I’ll be my messy self for a about week and then I get my energy back and my nausea clears up.

Please pray for my symptoms to be less this time around. It’s hard to explain exactly what is going on, but it can be very painful.

Hello!

Hi!
If you don’t know me my name is Bri, I am pretty much the crazy next door neighbor who tells your TMI about their life. Yep! Thay’s me! As some of you know, I was diagnosed with colon cancer and Lynch Syndrome esrlier this year. It threw my whole world upside down.
This first blog is mainly an introduction to… well…. me! So Hiya! How do you do?? *waving excitedly at you* 👋🏻👋🏻👋🏻👋🏻 I’m so glad you found my blog! I may know you personally, or maybe you just stumbled across it somehow. However you did, I am so excited you are here!
My main reason for starting my blogging is because I have so much to say, and it’s difficult to tell everyone since I can’t see you all the time. I decided not to make this solely a medical blog, I want to give updates about my medical journey that will most likely last the rest of my life, but I also want this to be so much more.
I want to share my life with you… all of it. The good, the bad and the ugly. Probably more ugly than some would like, but just to let you know that everyone is there at one point in their lives. I want to let people going through a rough patch know they are not alone. I want to share my thoughts and struggles and be a beacon for others. Whether that be sharing my mommy or wife moments, or my cancer or Lynch Syndrome journey, or just sharing a good scripture or book I can across. Whatever it may be, I want to share it with you.
I am not going into my whole back story today ….(believe me,I’ll get there!), but I just want to let you know this is an open space. I created this to share and connect with all those out there going through struggles in life. Life is rough, it’s not meant to do it alone. Reach out, tell me about you – I would love to connect with you. Hopefully if you just stumbled across here, I hope you find what you are looking for. I am an open book.