Insurance. Healthcare. Lies.

This is hard for me to share. I’m not a blogger. I don’t want sympathy or pity. In fact I don’t need it. I’m fine and I will be fine but if I can help someone else with my story I want to be able to do that. So, please be patient with me as I try to figure out how to go about this.

I’m going to make a long story short and try to get enough detail in.  In May of 2015 my gums were bleeding for no reason. I went to a dentist who saw the tumor in the roof of my mouth and suggested I see my doctor who suggested I see an Ear Nose and Throat specialist. I eventually developed an ulcer over the tumor in September and finally sought medical help in October. I had to wait until January of 2016 for an appointment with an ENT. I have no insurance and am self pay. I had to have a down payment to hold the appointment and had to wait 2 months to see the doctor. I was told after a painful biopsy that the tumor was benign. Come to find out its not, the tissue around it is but the tumor is cancerous.

I spoke with the office staff, signed up for Obama care and went with the insurance they suggested that was in network with them. For a discounted price of $300 per month.  I can’t afford that but thank goodness for my family and all their help and support.

I went to schedule surgery for the removal of the tumor and was told three weeks after getting the run around that they made a mistake and they were not in network. They could only see me as self pay and it would be about $15,000 for surgery.

So, I called my insurance company. They told me not to worry, they have several staff members here to help. They hire a third party company to handle their customers. I have a customer service representative assigned to me and a registered nurse immediately. They tell me which ENT’s are in network and suggest I call them. So I do. One has been retired for several years. The other has to have a referral, review the information and basically decide if they will see me. I called insurance, asked what other options I have as I wait and they send me to another third-party company who specifically handles claims in Texas. They are no help, the ent is no help. I’m stuck.

So my boyfriend and his family who have also been so amazing and supportive suggest I go to Mexico to see their doctors. I was too scared at first but after a few more months of dealing with this insurance crap I agreed to at least so the cat scan there.

We went to Juarez and met a very kind doctor named Dr. Sandoval. He was so comforting and personal. He explained to Peter (amazing,wonderful boyfriend) and I exactly what my biopsy report said and what it meant. I was upset and so scared. He read the medical terms and then told me the meanings of them. All I heard was cancer. He looked me in the eyes and told me “we will take care of this” and then gave us a ride in his car to the imaging center to get the scan. He filled out my paperwork and stayed with us the whole time translating and telling me it would be ok. Then he spent his afternoon taking me to two different surgeons for a consultation to find the right one for my surgery. No 6 week waiting period. They squeezed me in that day.  They lectured me about smoking cigarettes, my American doctors never mentioned it.  They told me they would do the surgery but only when I quit smoking. They explained the tumor, the cancer and the surgery to me in so much more detail than my other doctors did. They weren’t rushing me out the door. They were sincerely concerned for me, my life and my worries.

I told Peter I wasn’t ready to schedule surgery. I wanted to leave it in God’s hands. Pray about it and do everything I can to have it done here in America first and if in a month nothing comes of it I will take it as my sign that I’m supposed to go to Mexico. Either way this cancerous time bomb has to go asap!

Meanwhile in America I’m still waiting for my appointment with the only doctor of this specialty in network with my insurance. I have called the first ENT to ask them to send over records to the second ENT (costs $25 to have them send records by the way). The new ENT has so many referral patients that it will take weeks to review and another 2-3 months for an appointment. I’ve called my rn at my insurance company and also my rn and csr at the third party to my insurance company. No help, I’m just another phone call, another person, another number in the system. I’ve cried and begged and explained my situation to so many asking for some urgency to be placed behind this appointment. My life means nothing to them. I have CANCER!!! It’s confined and recovery looks to be very good but non the less I have an extremely agressive  cancer in the roof of my mouth. If it decides to spread its not a good deal for me.  Solution is simple. Remove it!

I’m scheduled for surgery very soon in Juarez. I’m scared. I trust them but I fear what may happen if there are complications. I went to my general practitioner at the suggestion of a dear friend and discussed it with her. She totally backs me in my decision and actually asked me to blog about this. She sees this everyday. American citizens being denied the treatment they need and deserve because of paperwork and status. I bet if I were a celebrity or the daughter of a wealthy oilman I wouldn’t have had to wait 2 months to see a doctor. I’m pissed that I have to travel 10 hours away and have surgery in another country but I’m disappointed in the fact that they cared more about me than the doctors of my own country.

I will update my blog as I can through my recovery. This is for information purposes only. Not to bash my doctors specifically or bash Obama care. For some it works. For me it has failed.

Blessings in Disguise

Learning to praise God during the struggles is a very hard thing to do but it’s necessary in order to gain the wisdom that can come from these difficult times. I’m here to reassure you that this is so true.  We have faced so many trials and so many hard times but God has been faithful to us through it all. If you are facing a difficult time right now and are finding it hard to see the glory please bare with me as I try to reveal the truth behind God’s promises and show you my personal story of how a tragic moment became a blessing in a very short period of time.

Deuteronomy 31:8
The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.

Peter and I have been together almost 5 years.  We came from a life of sinful behavior and together created a life in sin that eventually almost destroyed our relationship. We went to church and loved our kids but we lived together not married, had mouths like sailors and weren’t chasing after God’s plan for us.  After facing many trials together, me having cancer, him going through a 4 year and totally financially draining divorce all while trying to raise our 3 kids, blend our families and keep our businesses operating… we hit rock bottom.  We found ourselves at such a low point we both knew that only Jesus could save us.  We changed our lives, got engaged, joined small groups at our church, got connected, became members, volunteered, and devoted our future marriage to God.  The joy we experienced in this adventure (future long article to come of that journey), the people God placed in our lives to make it all happen and the love we experienced was incredible.

Then, three days before our wedding Peter had an accident at work and broke both of his feet. Yes, BOTH of his feet after an extension ladder slipped out at the bottom while he was working and he fell about 15 feet to the ground. This was devastating to me when I got the call because selfishly all I could think was “What about our wedding?!? What about our first dance?”

Now, even though I had surrendered my life to the Lord and I knew that he doesn’t ever cause pain or hurt in our lives this was a hard pill to swallow. “You mean to tell me God that we have been doing everything we can to follow your word and to change our lives in order to be more obedient to you and to follow your ways and you couldn’t just hold that ladder still for us?” I had big lessons to learn from this and I just didn’t know it yet.

See, when tragedy strikes it is so easy to take it personally or to think that God doesn’t love you because he didn’t stop it but that is a lie that the enemy slips into your head.

Romans 5:3-5
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.

After the initial shock wore off and I realized that my sweet fiance could have lost his life in this fall if he had hit his head on the way down or could easily be paralyzed for life if he had landed on his heels or his spine. I was quick to praise God for this.

We decided that the show must go on. We had our wedding and it wasn’t exactly as we planned it but it truly couldn’t have been more perfect.

Peter surprised me by standing on his two broken feet as I came down the aisle. After that the tears just wouldn’t stop flowing. It was beautiful, it was sincere and it was our unique story. It wasn’t at all what I had planned which was hard because I plan weddings for a living. So in my mind this wedding was going to be perfect.  It still was.  We celebrated what was important on this day because we had a scary reminder just a few days before that we may not always have each other.

The days and weeks and months to follow showed us exactly why this all happened.  Peter had surgery 4 days after our wedding and got some nice hardware in his right foot.

While I was sitting in the waiting room during his surgery I picked up a magazine and started to read and had a convicting word from God hit me.  Now, a lot of people think that I’m crazy when I tell them that the Lord told me to go read my bible so let me explain.  As I’m reading a headline about some Hollywood drama I had a thought enter my head that was so random and not in a way that I word things in my own head. So, I knew this was the Lord speaking to me.  I heard “Why are you wasting your time on this magazine? You need to get your bible and read the book of Job.” It was so clear it gave me goose bumps all over my body.  I wasn’t about to object to the Holy Spirit so I marched myself out to my suburban and got my bible and spent the next 2 hours reading the book of Job.  If you’ve never read the book of Job I highly suggest you do it.  It’s hard to read, its tragic and sad but in the end it shows God’s faithfulness.  It shows that no matter how perfect your life is in a moment it can all be ripped out from underneath you.  Even as his wife was telling him he should curse the Lord and die Job remained faithful and he was rewarded for his faithfulness.  This was so encouraging, it gave me the strength to continue seeking God during this time of trial.

So, we endured.  Peter is self employed, we have a very basic insurance package and no short term disability insurance.  Money was so tight.  We really didn’t know how we were going to make it but we just prayed. We spent the next month together every second of every day.  It was incredible.  Peter is a very independent person and honestly so am I.  He had to rely on me to get him up and down the ramp (our house is on a hill and you have to go up stairs to get to it. His brothers, brother in law and nephew lovingly built us a ramp)

I had to remove the door from the bathroom so his wheelchair could fit and changed out the shower head so we had one that he could hold and rinse himself off in a shower chair with his feet outside of the bathtub. We learned so much about each other during this process.  We learned each others strengths and weaknesses.  I realized all of the little things that he did for me that I took for granted.  Not only does he work, hard every day but he is home for dinner every night and is never too tired to hang out with me and the kids. He makes sure the doors are locked every single night and he brings me coffee every morning.  He helps me pick up after the kids and cook dinner.  He takes kids to school and to their sporting events.  He takes the trash to town (country living, we don’t have a dumpster), and feeds the animals. He starts my suburban for me on the cold mornings and shovels the porch and stairs when it snows.  You realize really quickly how amazingly helpful these things are when suddenly you have to do all of it.

The realization hit me that I was so blessed to be given the opportunity to see all these things during our honeymoon time and with him still being here with me.  Most of the time we don’t realize what our loved ones do for us until it’s too late and that person is gone. This brought me to tears one day as I prayed and prayed in gratitude. Thank you Lord for helping me to see what an amazing man I just married!

On the flip side he began to see the struggles I deal with day to day.  My job is very flexible.  I own a wedding venue, so I schedule showings and clean and set up the venue around the kids schedules and then work weddings mostly on Saturdays.  So, even though Peter is very good about helping me we have had fights in the past where I would cry and tell him I feel over worked and unappreciated.  I felt like the door mat that everyone walked on with no regard or consideration. Now, while I’ll admit this is very dramatic I really had days where I felt like nobody cared at all.  After spending so much time with me, watching what I do all day without being able to help me Peter told me one night that he appreciates me so much for all the little things he didn’t notice before.  Like how I go to Walmart 3 times a week because no matter how organized I try to be somebody always needs something, and how I know with each meal that I cook what each kid needs in order to eat the meal. This one needs sweet buns, this one hates mac n cheese but loves broccoli and this one refuses to eat beans so if I have this side, that side and this main course with the buns everyone should be satisfied….. for that meal.  Then there is the scheduling, 3 kids all with their own activities, dentist and orthodontist appointments and planning meals in and around all of it can get crazy.  It’s exhausting, but it’s worth it all when you get a little recognition and appreciation for it. It’s amazing how much more I enjoyed doing the daily chores when I knew that he appreciated me for it.

So, as we grew closer we came into December and it was close to Christmas time. Our church was having a miracle offering going on and we had some cash that was given to us by our friends and family at our wedding.  We decided to use that cash for our kids Christmas gifts and keep doing the best we could to collect on past jobs and continue to pay our bills. It wasn’t much but we decided to give 1/3 of the Christmas money we had stashed to the church and have faith that God would take care of us. In this miracle offering we wrote on a card the things we were praying for.  Of course the top of the list was healing over Peter and then our finances, children, etc. We also had an amazing group of friends and church family praying over Peter for healing.  It was so uplifting to have so many people supporting us, calling us to check on us, bringing us food and offering to help in every way possible. We had an appointment with Peter’s surgeon on December 6th for a follow up. We expected at this appointment he would be told he could start to use crutches (secretly we had already gotten some and Peter was using them here and there)  He was supposed to be non weight bearing on his left foot for 6-8 weeks and his right foot was supposed to be at least 3 months. After getting X-Rays done the doctor walked in and asked how he felt.  He told him he felt great! The doctor said “You should, you can get up and walk out of here if you want to.” Wow! God is SO SO good! It hadn’t even been 2 months since his accident and we were already able to put up the wheelchair.  It was still a process getting his strength back and dealing with the pain from surgery but he was up and walking in no time. We got our kids plenty of great things for Christmas, it was a very blessed holiday.

We are still recovering as the doctor bills come rolling in. There wasn’t anything major that happened to where we can say we had a miracle check come in and save the day but we did experience something incredible.  We made it by several small miracles and we were able to pay our bills, feed our children and survive after my husband had to take 3 months off of work without pay.  That is amazing.  God is so so good.

Now its February and Peter is back to work.  Its still slower, he has to take his time and is limited to what he can do and how long he can do it but he’s getting better day by day.

The lesson to take away here is that even when it doesn’t make sense and when you want to scream as loud as you can “WHY GOD, WHY?!?!” Nobody wants to hear the words “There is a reason for everything” but its true, there is always a reason. There is always a lesson to be learned and a strengthening that will occur.  When struggles come your way listen for God’s guidance, PRAY, PRAY, PRAY and be obedient, his love will get you through it.

Proverbs 3:5-6
Trust in the Lord with all your heart and lean not on your own understanding in all your ways submit to him, and he will make your paths straight.

We give all glory to God, who knew exactly what we needed and how to help us gain strength through this trial.  We like to joke that Satan kicked the ladder out from under Peter to test our faith. If that is what happened it backfired because this experience has extended our faith to a whole new level and brought us closer than I ever thought was possible.

Praise the Lord!

Keeping Faith

I was going thru my blog last night looking for a post to send to someone who may need to hear it, turns out I needed to hear it.

Here’s the link to the specific blog I’m talking about. https://jaymesjourneyblog.wordpress.com/2016/09/01/how-cancer-was-a-blessing-from-god/

When I had cancer my faith was at an all time high and I felt unstoppable. After cancer my faith hit an all time low, depression sunk in and that year became a year that was worse than the year before when I had cancer. (I plan to write about the whirlwind of emotions during that year later on because I feel like somebody needs to hear it but I’m just not ready yet.)

Peter and I were talking last night about why…. why was last year so hard? I opened my dream business last year, I became officially cancer free last year. This should have been our year to shine. The difference was we became so busy and so caught up in life that we stopped seeking God first. At the time I had cancer we had people all over the world (most we didn’t even know) praying for us. We were firm in our faith and life was tough but still okay. We were protected from the enemy. After radiation and clear scans the prayers stopped and we became complacent in our time with God.

We are getting married in a few months and have decided to put God first in our marriage and have been working really hard to take our faith to a new level and we are already seeing the blessings.

After reading my blog post from almost 2 years ago I had a thought put on my heart. “Jayme, look at what happened to you when everyone prayed for you. Why aren’t you praying for everyone, every chance you get?” So now I am telling you. Pray. Just pray. Dive into your bible, listen to pod casts, do whatever you can to extend your faith. Talk less, listen more. Pray like crazy and you will see a difference in your life.

Photo Credit: Julia Mason of Mason Photography, Amarillo Texas

Surviving Cancer Emotionally

I am just shy of a year since surgery. I finished radiation 8 months ago and had my first clean PET scan 4 months ago. I should be living on cloud 9!

This is hard for me to admit but I am not. I am living in a mental, emotional hell.

Anger: I have never harbored anger the way I am right now. I should be grateful for this new start to life I have been given. Instead I’m SO mad that at 31 years old I live in fear everyday that the cancer has returned. This makes me feel like a spoiled brat. I can put a smile on and try to pretend to be grateful but I can’t change how I feel.  I’m so mad at the doctors who did so many things wrong and I can’t believe I went to Juarez to get help.

Fear:  I am so scared. I’m scared to ride in a fast car, I’m scared to go to crowded places, I’m scared I’ll get shot, I’m scared I’ll have a wreck, I’m scared my life will be taken because I cheated death in some way.

Sadness: This one kills me slowly everyday. If I find myself alone I am crying. I cry all day, every day, driving down the road, sitting in my room, in the shower, any and every opportunity to cry is taken and it’s exhausting.

Guilt: When I see women who are in their 15th year of fighting cancer and little kids who have lost limbs to cancer I feel like such a terrible person. 1 for surviving and 2 for not being grateful!! Then the sadness kicks back in and it’s a vicious cycle.

The point of this blog? To get it out there. To finally admit that I am struggling. To explain the pain behind the smile and to tell other survivors that you are not alone! This is so hard. It’s not just hard on me. My sweet son sees me struggle and it hurts him too. My amazing boyfriend has had to just sit back and watch me change into this mess of a person with no control or ability to help.  I have been so stubborn that I haven’t even talked to my doctor about this. I’m just ashamed. I know I will get through it. I know I am not alone and I know it can’t be as bad as I feel like it is sometimes.

An open letter to the doctor who failed me.

Dr. Stroud,I bet you don’t even remember me and if you do I doubt you know the pain you caused. I called your office in November of 2015 terrified because of a tumor on the roof of my mouth. Your staff informed me that there was a 6week waiting period and it would be January before I’d be seen. I cried and begged them to call if there was a cancellation because I was so scared that this was cancer. That call never came. I saw you in January of 2016 and you performed a biopsy of the tumor. You called a few days later to tell us that the tumor was not cancerous but still needed to be removed. I spoke to your office manager who recommended an insurance company and I naively took her advice. I called to schedule surgery and found out that your office manager misinformed me about the insurance and the insurance I got was not in network but I could self pay if I wanted to see you. She made a terrible mistake but showed no remorse. When I was bawling on the phone asking what I should do now she coldly told me that if I wanted to see you I’d have to self pay and that she thought my insurance was in network but they weren’t so there was nothing she could do. After all it wasn’t her life on the line. That was tough to deal with but then your mistake came to light and completely rocked my world. 

After a long few months of trying to find a doctor to perform surgery I decided to take matters into my own hands (after much persuasion from my wonderful family). I got the lab results from your office (which I had to pay $25 for) and I went to Juarez Mexico for advice. That is where I learned that there was a possibility that this tumor was cancerous. He told me I need to have surgery asap I got scans and blood work done and met with a few surgeons. I came back to the states and contacted your office again for help. I needed a referral with an urgency put behind it in order to get into another ENT quickly. Your office sent the referral with no urgency. They were cold and rude and had no concern for my life. I spoke to your nurse who rudely told me that the lab results said that I could have 4 different things 2 are cancer and 2 are not meaning we don’t know what it is. However, telling me the tumor isn’t cancer is still not correct information but she wasn’t going to listen to my concerns about that. 

I ended up having surgery in Juarez by amazing doctors who do care about my life, so much so they saved me and the roof of my mouth. After testing the tumor both there and here in the states it was discovered that I in fact do have cancer. A very aggressive, fast spreading cancer. Adenoid cystic carcinoma. Due to the fact that you dropped the ball  the tumor had quadrupled in the months before I finally left it up to God and went to Juarez. I underwent 36 rounds of radiation. All while working and raising my son. According to my surgeon none of that would have been necessary had you done your job and removed the tumor when I saw you the first time. 

You, however will never face any consequences for your actions. Why? Because I lived. Had I not lived my family could then sue you but they wouldn’t have me. It’s a terrible system. I however, fought for my life despite what you did to me. Now I struggle to get treatment because some of the doctors here discriminate against me for going to the doctors who saved my life simply because they are from Mexico. I’m ok with that though. One lesson you taught me was that not all doctors have your best interest at heart so if they decide to discriminate against my doctors I don’t want them to treat me anyway. 

It took me over a year to come to terms with what you did. I had to pray a lot and forgive you and your staff even though you weren’t sorry. I am grateful that my surgery was taken out of your hands and placed into the loving hands of Dr. De Leon and Dr. Sandoval. I am grateful to my family and friends for supporting me through this last year. I’m thankful to God for protecting me and I’m grateful to the doctors who saved my life in Juarez and my amazing oncologist Dr. Gwozdz here in Amarillo. 

I hope this reaches you Dr. Stroud and I hope and pray that what you take from this is that your job is important. In certain circumstances you hold the key to life and death and your staff needs a lesson on compassion. We are all human, we all make mistakes but your mistakes could have cost me my life and this little boy would be without a mom. I walked into your office terrified, I knew it was cancer and I expressed that to you. I was treated like a number rather than a human. I was just another patient with another issue, nothing special, no sympathy whatsoever. As a doctor people trust you and depend on you. Your job is demanding and stressful I imagine but you choose to do this so please don’t take for granted the trust people place on you and dont forget that your patients are people just like you. They too are somebody’s child, sister, brother, husband, wife, mom or dad. You should treat them all as if they are your family not just another patient with another issue. 

How getting cancer was a blessing from God

I remember just like it was yesterday. Peter saying the words to me “You still have cancer and the doctors are recommending radiation” after my surgery.  The doctor called him heartbroken that they had not removed all of the cancer with the tumor. This was a blow I was not expecting. I thought that having the tumor was so bad and the process to remove it was so long and painful that if I could get through that I’d be great.  I lived through the surgery so I thought I was clear.  No…. the worst was yet to come.  I didn’t cry or break down.  In fact I told my whole family they could not cry or break down in front of me.

I never thought I’d be sitting here just 4 months later wondering why I was chosen to be so blessed.  I’m still waiting to find out if I still have cancer.  Regardless of the results I am blessed.  I have never looked at humanity the same and never will.  I never knew the extent of people’s love for me until I was diagnosed with cancer.  I never knew the power of prayer and the comfort of church before I got cancer.

I gave up on religion after being burned by it as a child.  I always believed in God but didn’t agree with him or his word for many years.  Before I found out I had a tumor Peter’s sister invited the kids to go to Wednesday church.  They just loved it and wanted to go on Sunday.  I was so against it that I went but stayed at the coffee shop until it was time to pick them up.  Slowly the Lord started speaking to me.  I felt an urge to go in and listen so we did.  It was like the preacher was preaching directly to me.  Then I found out I had cancer and honestly got really scared because I thought that church was brought  back into my life so I could be saved last minute before the disease took my life.  I no longer believe that to be true.  I believe I got cancer because God has big plans for me and I’m stubborn so he had to go pretty extreme to get my attention.  I will forever be changed by this experience.  I have been touched my God in so many ways.

One day I was at home by myself.  Too hurt and weak from radiation to go do manual labor with my sweetheart that day and mentally too exhausted to go do office work.  I was down and very upset. I had to force myself out of bed to take a shower.  I cried in that shower until I had no hot water and kept on crying.  I felt a warm feeling all the sudden in the middle of my melt down.  I felt like I needed to open my eyes and look at the big picture.  Yes I have cancer, Yes I’m very young to have cancer, Yes my insurance and doctor both screwed up forcing me to go to Mexico BUT…. I am alive, and well and I CAN get through this.  God knew what I needed.  The surgeon in Mexico saved my life and the roof of my mouth.  He forced my hand and made me go out of my comfort zone so that I could be better off.  Then I got out of the shower and had a text from Peter’s sister in law.  Here is what it said.  “God says you are not alone! He says you hear him but doubt him.  He loves you so much.  He won’t let me go on this, this is the 3rd time you’ve crossed my mind and he tells me to remind you – HE loves you.  He is going thru it all with you, that ‘s a promise. Not that he is removing anything to make  your life easier but he says Tell Jayme that I am everything she needs”  Wow!!! how can you argue with that? The timing was perfect and the words were exactly what I needed.  So I decided to listen and focus on what he was trying to teach me.

My faith is at an all time high, church is a comforting, safe place to me and I look forward to going.  I am working on a whole new me.  I see now that I have to let go of things, forgive people who don’t deserve it and spread love the way God wants me to.  I still struggle daily with this.  I have to pray daily for patience and love and happiness.  I am at a point now where I wake up and wonder every morning if I still have cancer.  Then I have to remember to hand my burdens over to God and go about my day.  This process is so draining that I have to remind myself of my many blessings and ask God to help me to be happier about the little things and stress less about everything else several times a day. It has been a struggle. I do believe that the devil is attacking in every way possible to bring me down.  I remain strong in my beliefs and over the past week have come a long way in being a happier person.  If the timing of everything hadn’t been just perfect I would not be sitting here the way I am now. God is good.

I am blessed like crazy cancer and all!

Off with her HAIR!

July 24th 2016

Tonight was so hard! Peter shaved my hair for me. It was falling out in chunks. I was waking up every morning with hair on my pillow and every time I brushed my hair it just fell out. I was having multiple breakdowns a day when Peter finally suggested that we shave it.

Again, I am SO blessed. My doctor even said that I shouldn’t complain because “look at the women walking around with no hair”. I’m losing my hair at the bottom by my neck where its not very noticeable. While this is true and I am grateful that I am not losing all of my hair it doesn’t mean that as a woman losing my hair in chunks doesn’t mess with my psyche. I LOVE my doctor but this is the one area where he did hurt my feelings.  I have been so blessed, lucky, whatever you want to call it throughout this whole thing.  I don’t have to have chemo, my outlook is great as far as survival, I won’t lose all of my hair and I didn’t lose all of the roof of my mouth.  However, this is not a walk in the park.  I don’t think dealing with cancer at any age is easy but for me to deal with it at 30 while I am still raising my child has been very difficult, losing my hair no matter how little I am losing is so painful on my heart, being too weak to do the things I used to do is frustrating. I am all about being tough and not throwing a pity party and keeping a positive outlook on all of this. I believe that is key for survival.  But I need to know it’s okay to break down every once and a while. I need reassurance that even though I’m lucky to not have to deal with everything that other people deal with in this situation that I am valid in feeling mad and upset about my situation.  I don’t plan to fall off and live in this hole of depression but I do need to know it’s okay sometimes.

For those of you who don’t really know me let me just try to break down a little bit of my personality.  I am extremely stubborn and very independent, I’ve been told that I have a “do what I want” personality and I am late everywhere I go. I grew up a country girl, riding my horse was my everything. I competed in barrel racing,  my dad was a farrier and I was his side kick. I wore my little hat backwards, boots and jeans and spit sunflower seeds wherever it was allowed and followed my dad around helping him with whatever he was doing.  I could be considered a tom boy because I love to get out there and roof houses, install windows and siding with the guys (mostly with my guy) but I also am pretty obsessed with my hair and can not go anywhere (even to a rooftop) without it being fixed. I have had office jobs in the past but it just wasn’t me.  I can’t sit still for that long. I want to be up and going and moving.  I love to run especially when I am stressed.  At the most stressful point in my life, before this, Landry would ride his bike and I would run next to him 3 miles every single day.  When I take my boots off I love to slip a skirt and heels on. I love animals and can turn any animal into a pet.  I stop for every stray I come across no matter how frustrated my loved ones get with me.  I love to have my nails done but I am too cheap to get them done professionally so I figured out how to grow them out and shellac them myself at home.  So I am a lot of both girly girl and tom boy.  That being said, this whole cancer thing is really cramping my style.  Mentally the hair loss has been the hardest part next to facing the fact that I could die.  Physically I can’t handle the heat and I’m losing my strength from not taking in enough calories so that leaves me working at the office or at home more than I get to be at the job site which is making me lose my mind.

I do not mean for this to be a negative post. Even though it doesn’t sound like it I am actually doing really good. For those of you going through cancer you need to know that it is okay to be mad. It’s okay to be upset and frustrated. You ARE valid in feeling that way. Just don’t stay there. Count your blessings and pray a lot. Don’t let people get you down.  You will find out who your friends are through all of this.  Honestly having cancer has changed me in ways I couldn’t imagine. I have become softer in some areas and harder in some areas but I believe that my changes are all good.  God does things for a reason and I trust and believe in his plan. I have bad days and I have doubts but at the end of the day I know where I stand and I know that I am exactly where I am supposed to be.  Even though it seems like this nightmare of radiation and recovery will never end it will and soon this will be just another rough patch in my life.  I know I will make it and I know I will look back and think “it wasn’t that bad”.  Right now it’s hard to realize it but a year out of your life is nothing when looking at the big picture.  I think next time Peter shaves my head he should at least give me a cool chevron design or something though. 😉

 

36 days of radiation

Radiation. That word rang thru my ears for weeks. I have been told the side effects and that this is way better than chemo so I am grateful for being granted an easier way to heal.

I will go in for 36 days for 15 minutes at a time. Here I am documenting my experience day by day. Most won’t care to read this every day but in all my research I never found anything that documented every step and the fear of the unknown is killing me. So hopefully someone who is about to go through this will see this and see what it was like for me.

6-30-16 Day 1: oh boy am I nervous. I went and had breakfast with one of my best friends Tiffany. She has known me since I was 7 and has an amazing sense of humor so it was nice to laugh with her before treatment. She followed me to Dr.  John’s office and went in with me. To my surprise Peter was there waiting. I thought he had to work but he cut out to meet me there. I was so glad because I was so scared.  The techs that actually do the radiation are the best! So sweet and understanding. As I laid on the table and they prepared my mask tears started running down my face. Peter and Tiffany watched helplessly as they strapped me in. I asked Peter to get a picture of me in the mask because I’ve had so many people ask what it’s like. So here it is.

The ring you see on my belly is for me to hold onto while the machines do their thing. My mouth looks weird because I have a mouth guard in to try to protect my tongue. Most ask is it uncomfortable? Yes, yes it is. The treatment was over pretty quickly the machines circled around me clicking and buzzing and then I was free to go. The mask was so tight I was left with some pretty circles on my forehead and neck. 

After that I felt fine. Picked up my niece and Landry and took them bowling. Peter met us there after work and then it hit. A horrible headache. It went thru my jaw bone under my eye and into my head. I felt nauseated and just wanted to sleep. We left my car at the bowling alley and Peter took me home.

Day 2: Appointment was at 4pm. So I had all day to dread going. I felt better but still not great. I went on and worked all day then to the appointment. This time the mask wasn’t as scary and I focused on relaxing because I shouldn’t feel any symptoms yet so my pain is likely from being so tense. This one was way better, quicker and easier. Again the girls that set me up were sweet and comforting.  I felt ok afterwards. My mouth is a little sore after getting home I looked and it seems like the side effects are starting already but that is okay. Small blisters inside my mouth. Luckily it’s 4th of July weekend so I get a 3 day break. Here you can see a small blister and swelling. Luckily I can still eat!

7-5-16 Day 3: Today was rough, I just started feeling better and now I get to go again. I had a bad attitude all day today. Not good. Hopefully I can kick it. Treatment was nothing special. In and out, no pain.

7-6-16 Day 4: I changed my attitude. Much better day. Saw Dr. John for my weekly check up. Everything looks good. My surgery site is healed very nicely. Expectations from here is a sore throat, and thick saliva.

7-7-16 Day 5: Woke up to sweet messages from my mom, aunt and step mom.  

Love it! Seriously I get this stuff daily!!! Treatment today went fast. I’m getting better at getting my mouth piece in and getting the mask into position and feeling more comfortable in the mask. Still very little pain. Biggest side effect is being tired. SO tired. Like I haven’t felt this tired since I was pregnant. Other than that my mouth feels rough, tongue a little sore but I’m adjusting to all of that pretty well. Tomorrow is Friday and I get my break! Woohoo!!

7-8-16 Day 6: I don’t wanna…. Its Friday we are hanging out with the kids today and of course we have to schedule everything around radiation. It’s okay though. I paid my August payment today! My army is amazing!! I have a date tonight with my handsome man. I’m so excited! This could be our last kid free night while I still feel okay.

Okay, I fell way behind but here is my update FINALLY! I am going to do weekly updates for a while because day to day not much changes.

7/11/16-7/15/16 Days 7-10: So far so good, haven’t lost any weight. Taste buds are looking pretty rough and things are starting to taste bad.  I’m struggling with nausea which isn’t supposed to be a side effect. Hopefully I didn’t catch a bug. Friday the machine broke down so no radiation.

7/18/16-7/22/16 Days 11-15: I figured out my nausea! Heart Burn!! Who knew stress causes heart burn? My hair is starting to fall out. I’m really struggling with that one but other than that I’m just trucking along. I officially can’t taste anything but with the heart burn being defeated at least I can have some relief and not feel so bad. Tuesday was my 31st Birthday and my dad surprised me by showing up to my radiation. My sweet step-mom went and worked for him so he could go. It takes a village to take care of me I swear!

7/25/16-7/29/16 Days 16-20:This weekend my friends and family are hosting a benefit to help me pay for radiation. They have all worked so hard I just can’t ever show my appreciation. This is embarrassing and humbling. I would seriously be dead if it weren’t for all the help I have received.   Losing weight now, not much but a few pounds here and there.  Eating is the worst! I am hurting a little but that’s really not even the worst part. The hardest part is the taste. Imagine the food you hate the most. Okay, now imagine everything you eat tasting like that food, morning, noon and night. I just can’t make myself eat when everything that goes in my mouth tastes like garbage. I’m pretty much eating to survive at this point. My hair falling out was out of control so my wonderful boyfriend shaved it for me.

Shaved hair is cooler in the summer as my doctor reminded me. (He is great! His sense of humor is unique but I just love him) my friend/hair stylist- Sonia fixed me up and you can’t even tell. It’s such a blessing to have her and all the other girls in the salon talk to me and tell me how beautiful my hair is when I was feeling so down.

8/1/16-8/5/16 Days 21-25: Rough week. I do not want to have a pity party, just want to be honest.  The pain kicked in and I felt really bad.  They started me on pain patches and that helped.  The hardest part about all of this is the built up frustration and anger.  I feel like nobody understands or can relate. I am lashing out at my sweet boyfriend because he is the closest to me.  I just feel like the world is going on around me and I’m stuck here in this hole. I can’t do so many of the things that keep my happy and keep my mind clear, I can’t run, I can’t work outside, I feel so lonely and frustrated. I crave things like chicken salad and a snickers bar with no satisfaction.  I am so close to being done I can do this, I am just really struggling.

Gums are turning white, teeth are looking rough and my skin is just so dry.

8/8/16-8/12/16 Days 26-30: Another week gone by.  I am doing somewhat better. Praying for relief and understanding has helped.  I have to realize that Peter is my rock and I have to show him love through all of this because I can’t imagine how hard this is on him. I am feeling guilty for my behavior last week. He is amazing. He never holds it against me. I just wonder if he ever thinks “wow why me? why am I stuck with crazy cancer lady?” ha ha. On the bright side I have one week and one day left! I can see the light at the end of this tunnel!! I am SO excited.

Blisters on my tongue, ouch. My cheeks and roof of mouth are all just as bad.

8/15/16-8/19/16 Days 31-35:Last full week! I have been on a high knowing I’m almost done has given me a sudden burst of energy and motivation. The pain is pretty bad but I’m still going strong. The daily messages from friends and family keep my spirits going. My mom sends me sweet, encouraging messages daily, along with special treats and mouthwashes to help me. My dad calls me every day to check on me. My friends are always texting and calling to see if I’m okay. Peter’s family  cooked so much food for us so I don’t have to cook. I am blessed beyond measure!

Message from mom

8/22/16 LAST DAY!!! I was so excited to finish radiation. Peter went with me and I found it fitting that his mom happened to be in town and went as well since she was there when all of this started. As I lay there thanking God for getting me through this tears ran down my face under my mask. When we were done they came and unhooked me and cheered. When the girls saw I was crying they hugged me so tight and congratulated me. I will forever be grateful for the staff at Texas Oncology. Like I told them, I love them but hope I never have to go into this room again.

My baby giving me roses (with help from my mom)

As I walked out my mom and baby brother were there with balloons. Seriously I don’t deserve all this love!
Now I have an appointment in October for a physical and then another PET scan in December. Until then all I can do is heal and pray that the cancer has left my body.

Finally Acceptance

For those who have helped me and for those battling right now this is for you. If you have been diagnosed with cancer or have a loved one who has. This is about as raw and as real as it gets. This is something that will rock your world, make you question things you should never question, push people you love the most away, it can break you and some days you will feel totally alone in a crowded room full of people who love you. But it WILL be okay. No matter what your future holds or what the outlook is it will be okay.

They say there are 5 stages of grief and there is so much truth to that.

Denial- when I was first diagnosed I have explained (or tried to) the numb feeling I had. Just absolutely no emotions. This was denial. In the back of my head this wasn’t real, there must be a mistake and I was going to wake up tomorrow and be just fine.  There was no way God would give this to me when the trials in my life right now are so difficult. I have a son who needs me and who I am his only parent. This just can’t be real.

Anger- this one was tough. Oh I was angry. I couldn’t sleep for weeks, I would have nightmares all night if I did sleep and then my fear of the dreams kept me awake and lack of sleep will make you lose your mind. I went outside and screamed WHY!?!? Why me God? What have I done so wrong in my life that I have to do this? What about Landry? He needs me!! I don’t want cancer, I don’t want surgery, I don’t want to die. I dont want any of this. Part of being a christian is having faith and being faithful. The devil was really working on me. I was taking zanex every day just to keep from losing my mind. I was so mad and turned that anger on Peter at times. He is so wonderful, he understands and he loves me so unconditionally, he never snapped back or got short with me like I certainly did to him. A good support team or army as I like to call it is key to getting thru the emotions.

Bargaining- this is where I got tough. I decided if I was going to have to say the words “I have cancer” I was only going to say it for a few weeks. I prayed and begged for guidance and for the right surgeon to take it out and to let me be done. If I was a faithful servant then I should be granted freedom from this.  I felt this urgency to fix it.

Depression- I managed to continue my treatments, surgery, trips back and forth to Mexico, being a mom and working all together. I kept working like crazy, obsessed with keeping the house clean, made sure my will was in place and ready in case something should happen. I thought I was doing pretty good. Still struggling with sleep and pushing away from my loved ones took its toll. I felt like my having cancer made me unattractive to Peter, I felt like my trips and doctors appointments making me miss Landry’s events and activities made me a bad mom, I felt like my lack of communication with my parents made me a bad daughter. I honestly thought at one point it was my time and that I really deserved this. I broke. I was no longer strong or tough, I was broken, a crazy person who couldn’t make a decision about anything, my mouth hurt, my heart hurt, I was scared and sometimes down right mean to the ones I love the most. I’m a monster!!! I pulled away, laid in bed and cried, I cried until I had no more tears, I had a psycho cry where I was hysterical and cussing and pretty much lost it to a point that I would have been committed to a mental institution if anyone had seen my breakdown. I texted my best friend Chelsea some crazy stuff about how I can’t do this and she pretty much told me I can and I have to because she wasnt going to let me give up. I was so worn down and worn out, I calmed down and Peter came in and just looked at me and I fell apart again. For the first time since this has started he saw me at my weakest. He has seen tears here and there but this, this was me at my lowest, no self esteem, no energy, no will power, no fight, no strength. I would rather be in a room full of strangers completely naked and embarrassed than to feel that again. That is the most vulnerable I have ever felt in my life and I have been through a lot in my little life. I survived childhood divorce, my own abusive marriage, my own divorce, single mom hood, financial struggles, lots of normal life struggles. I have never felt more broken than I did in that moment as I scream cried to him “I don’t want to have cancer!!!!!!!” His heart broke, those big blue eyes looked at me with such seriousness. He held me and told me he didn’t want me to have it either but it would be okay and he would not lose his best friend. He assured me he would not leave my side, he would love me at my most un loveable moments, he would pick me up when I am too weak to carry on, he would love me and still think I’m beautiful if I lose my hair. He held me until I calmed down and then made me get up and get dressed. I was pretty foggy and out of it the next few days just sorting out the feelings I was having. Finally a few good nights of sleep came and I felt better and knew that I couldn’t ever go back to that dark place again.

Acceptance- it’s been 8 weeks since my diagnosis and I feel like in the last three days I have finally made it to acceptance. I know the hard days are not over but at the end of the day it is what it is and I have no choice but to deal with it.  I might as well enjoy life, my child, my love, church, cookouts, fishing, the little joys in life should not go away especially not now. I have accepted the fact that I could die and I am ok with it. I will not surrender to that and I will not go down without a fight but this is all happening for a reason and I am not in control of that and that is okay.

Most of all now I know why. My biggest question through all of this. I am a mother hen type, coincidentally my zodiac sign is cancer and I very much fit the role. I love with all of me. I am and always have been the person that when someone needs something I will be right there to help and do whatever I can for them. I often fill my plate too full and don’t always make it to every party or event but when its real I’m there. I’m also a sucker for people and animals who need help. It hurts my heart so deeply to see a homeless person under a bridge or to see a stray dog lost and scared on the side of the road.  I’m also very moody and independent. I’m the ” I do what I want” type. I don’t need help from anyone, I’m tough and I can be cold at times because I struggle to express my needs and hurts because that would be weak. Oh how this has humbled me. I have people I don’t know, they don’t know me but they are praying for me in groups, at church, sending me messages, donating things to help raise money, donating money, bringing me pills for my immune system and oils to help cure this awful cancer inside of me. My friends and family and Peter’s family have all come together to make sure I’m okay. They are my army. From organizing fund raisers to dropping everything to take me to Mexico for surgery and follow ups,  random text messages and phone calls to check on me and little notes being dropped off at my office just to make my day.  I DO need people and every time I have helped a friend, family member, homeless person or even stray animal is being repaid to me ten fold. I don’t deserve this kind of love. It’s so important to me that every single person who has reached out to me or to to my family has contributed to helping me make it one more hour or one more day. There are no words to express my gratitude and my feelings about all of this. My heart is full. I feel so loved by so many and I feel safe and supported by an army of people. This is God’s love. He is using me for something great. I don’t know if this is to humble my heart or to bring me down a few notches on my stubborn side or maybe even to help others going through this.

I sit in this cancer center and look around and I am by far the youngest person there. I’m younger than the family members bringing their loved ones in for treatments and wonder what their story is. How is that old man in a wheel chair here with no family here with him dealing with not only the emotions but with the financial and insurance side of this? So I talked to him. I want to know his story and I want to help this cause. Help people go to their treatments, hold their hands when they are having pain and pray with them when they feel helpless. I’m being called to make a move. To bring awareness to the holes in the system, to help others going through this, to realize I am important and my life does matter and so does theirs. I can’t imagine what mothers go through when their babies have cancer. I want to figure out a way to find other people who have struggled getting help like I have and fix it. There is no reason a perfectly healthy 30 year old woman who has worked half her life in America paying taxes and has never lived off of government assistance should have to go to Mexico to seek treatment because of holes in our system. I am just to a point now to where I am listening, I’m watching for my signs of what I should do and I am not questioning why anymore. I know why I just haven’t been given the complete map to follow my path yet but its coming.

Thank you to EVERYONE who has contributed in making this journey easier for me.

Please continue to pray, please continue to share my story and please if YOU need help tell me and let me try to help you.

Back to American Doctors

Now that surgery is over and my doctors in Mexico were unable to get negative margins on my labs it’s time for radiation. What that means is finding a doctor here in America (preferably close to home) to treat me. I looked up my provider list and began making calls and getting appointments.

Today was a rollercoaster of a day. I had all my paperwork ready to go. I have one group in network that does radiation. So I called and the sweet receptionist set me up an appointment with Dr. Reddy. I was so nervous to go. I picked up my mom on the way and we went. He was not very understanding of my getting surgery in Mexico and even talked to my doctor from Mexico on the phone. He was very condescending.  He told me I needed to have more of my palate cut away until they reached tissue that tested negative. So, um who needs the roof of their mouth anyway right? The thought of more surgeries made me sick. He told me he could not treat me because he specializes in chemotherapy and I need radiation. Duh! I knew I needed radiation. So why was I in here listening to this guy crush my world? I really have no idea why he even talked to me or looked at my surgery site when he knew from the beginning anything to do with the head or neck required radiation, not chemo.  We left and I was more than upset. I was devastated! I felt like I would die before I was treated for this.

My phone rang about an hour later and the sweet voice on the other end of the phone told me she was Dr. Gwozdz’s nurse and she wanted to apologize for the receptionist making me an appointment with the wrong doctor but if I could come back right now she would like for me to talk to him. She also told me that everyone refers to him as Dr. John because of the crazy spelling of his last name. I was miss Negative Nancy at that point.  I reluctantly said yes wondering if my heart could handle anymore bad news today. We went back up to his office (my sweet mom rushed back up there) and he and his nurse were a breath of fresh air. I immediately told them about my experience with his colleague and told him I felt judged for going to Mexico but explained that I had no other choice. He was kind and understanding. He looked at my wound and couldn’t believe I was back to work already, no pain pills, no pain at all and was already eating pretty normally. He said the wound looked great and was healing nicely and that he doesn’t disagree with me going to Mexico. He began to tell me the steps that need to be taken to make sure all this nasty cancer is gone. With a diagnosis like mine. Which is Adnoid Cystic Carcinoma it’s so rare he wants a second lab opinion. So he asked that the tumor slides be sent from Mexico to him where he can have his lab take another look. Then he wants me to go to a dentist and begin fluoride treatments, I also need to see an oral surgeon and have xrays done to make sure the roots of my teeth are strong enough to handle radiation, I need a PET scan and then I will need to go to Dallas and have a second opinion on the surgery to make sure that he is correct in treating with radiation since my surgeon in Mexico did leave me most of my hard palate. Then in 4-5 weeks when my mouth is healed I can start radiation 5 days a week for 7 to 8 weeks. What is amazing to me is that from the beginning of this I wanted to go to MD Anderson. I’ve always heard that if you have cancer and want to live go there. Dr. John worked at MD from 1993 to 1997 and was named chief resident in 1996. Coincidences don’t happen. I feel like this is a sign, a way for God to relieve my stress and let me have my MD Anderson but be close to home while going through radiation. 

His is sweet nurse explained the side effects. Y’all should have seen the look on my face when he said I’d be back on a liquid diet! Bring on the chocolate cake! I lost 10 pounds in 2 weeks last time bringing me down to 122 pounds at 5’5 that is about as skinny as I can get without looking like I’m on my death bed. Also, can we get some zanex for my sweet boyfriend who will have to listen to me gripe for those 2 months?  I’m kidding, he has been amazing. I need to try my best to leave out the complaining. I know he was sick of it by the end of the two weeks but he never got impatient with me he was always sympathetic.  

So, we have a plan. A very expensive plan but a plan none the less. My amazing friend Chelsea has started organizing a fundraiser to help with the cost of all of this and I’m blown away at all the help and support she is getting from my friends and family. I’m so grateful for her and her support during this hard time. This is a huge swallow of pride for me. I don’t want to be the center of attention for anything much less a “give me money fund”.

I’m having a hard time accepting the help that others are so willing to give but I was told recently by Peter’s mom that if someone wants to bless me don’t steal their blessing. Meaning that if someone blesses me out of the kindness of their heart they will be blessed in return so don’t deny their blessing and steal their blessing. Wow. I’ve never thought about it that way.

So when I ask myself “why me” I need to remember all the amazing blessings that have come from this, all the lessons learned about things I was totally naive to, the closeness it has brought between me and so many people in my life and the amazing doctors I have been able to meet!