Alicia’s Story

Site created on February 13, 2014

Welcome to Alicia's CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.

First, let me start with the fact that I have cancer.  It is a rare and aggressive cancer that typically has a poor prognosis.  Now that is out in the open, I also need to tell you that I am going to beat this cancer and I am not interested in the data about it that you will find on the internet or in medical journals because I WILL be a survivor, so you can just factor that into the statistics right from the start.  For those who want the scoop beyond that, keep reading.  

I first started having mild cramping and low back pain in September 2013.  The symptoms were trivial initially.  By December the symptoms progressed and included periodic abdominal discomfort, constipation and heavy periods attributed to possible uterine fibroids. I followed-up with my OB on January 7, 2014.  She said my uterus felt enlarged on exam, and she ordered an ultrasound.  This showed a tumor diagnosed as a possible fibroid, but the results were inconclusive.  Therefore I had an MRI, followed by a second MRI, that raised the rare but possible chance that the tumor was a cancer.  I met with an oncologist on January 31, 2014, who said the odds were on my side but he wanted to get the tumor removed as soon as possible.  I had a CT of my chest, abdomen and pelvis on February 10, with my surgery scheduled on February 11, 2014.  When I met with the surgeon on the morning of the surgery, I got my first real wake-up call as he shared the CT results with me.  The tumor in my uterus had doubled in size in a little over a week, and there were nodules in my lungs.  He mentioned this was concerning for cancer and that because of the size of the tumor they might not be able to fully remove it with the surgery.

Fortunately, they were able to remove the basketball sized tumor successfully but it had broken through the wall of my uterus and wrapped around my ovary and ureter (the tube that connects the kidney to the bladder).  It was a three-hour surgery and I lost a good deal of blood requiring a transfusion.  I stayed in the ICU the first night, which was a rough one.  I have fortunately been healing well and am making good progress.  I will likely be discharged on Valentine's Day and headed to the comforts of home.  

The tumor was found to be a leiomyosarcoma (which is a tumor originating from smooth muscle) and because of the possible spread to my lungs, they are considering it Stage 4.  But again, we are not going to get bogged down in the numbers since this is not about numbers (believe me this is not like a typical math teacher- but who says I am a typical math teacher!), it is about beating the odds and surviving because I have so much to live for each and every day!

As for the road ahead of me, it is going to be a long one with ups and downs, but we are going to remain positive, hopeful and faithful.  After two to three weeks of healing with some repeat scans, I will start chemotherapy with two agents that will be given two weeks on and one week off for the next six months.  Depending on my response, the length and chemotherapy agents may change, and I may require radiation following the chemotherapy.   I am fortunately in the care of good doctors, and the strength that has come from the love and support of my friends and family during this difficult time has been uplifting and all of your prayers have been a blessing.  Most importantly, I have the strength of my Christian faith and I know God will love and care for me throughout this process.

So if you are tempted to be sad and overwhelmed, I understand.  I feel that way at times too, but that is not what we need right now.  What we need right now is a positive attitude, continued prayers and to know that there will be a happy ending to this story that I am just starting to write.  

Newest Update

Journal entry by Alicia Rayner

We had a WONDERFUL time in Door Co! It was the getaway we needed for a change a pace to relax and recharge.  Grateful for family and friends for our perfect secluded retreat where we laughed, played games and made memories. Thank you Eric and Michelle for making it happen!  Truly a priceless gift!

The following week after our weekend trip, I was supposed to get chemo, but my doctors and I agreed that I should give my body an extra week to rest and recoup since the last round I landed myself in the hospital for a 3 day stay.  After 6 years of intense treatment my body doesn't spring back as quickly which can be really frustrating for a variety of reasons.  I met with a GI surgeon that week to also help figure out why I was getting intense pain a week after chemo which could also may attribute to my fevers.  She was wonderful and she developed a plan and got me on medications.  That week I also tried to take advantage of not being on chemo by going on a couple of hikes with the boys, our first successful geocaching trip on our own and a trip to IKEA to get them desks for their rooms for remote/virtual learning.  I was hoping I would have more energy to have bigger adventures with the kids, but we embraced what we could.  My lack of energy is more infuriating to myself because it limits me from doing what I want with my family, but I am grateful because I realize that side effect is mild in the grand scheme of things and that I am still able to be active.  Plus during this time, I have been spinning my wheels as I prepare to teach full time this year.  The first time in 6 years!  It is going to be an adventure in a new building and remotely, but I'm going back to my roots of middle school math.  I'm definitely a mix of emotions.  Also, I have either been a math specialist or reading interventionist since I've had cancer, so tackling classroom teaching  again is a whole new ballgame.  Once again, I keep reminding myself this is where I started and I have 22 years of knowledge and work in education so I have to be better than I was in 1999...right?!

The week of August 10th, I finished Round 4 out of 6. It had its normal ups and downs. Since we know what to expect, we usually can quickly tackle any issues that may arise.  It definitely makes me very tired.  However, it was nice to get out Friday night to celebrate Mary Turner's birthday in her backyard.  I promise it was a low-key night just chilling and laughing, but the following day while out running errands and shopping I had an interesting turn of events. Yes, I know that Tim would have gladly ran the errands, but after spending the whole week at home or in the hospital, I NEEDED to get out plus I was feeling good. When I was shopping, I started to feel weak, so I decided to head back to my car and go home.  I gave myself a minute to regroup then I started to head home. As I got on the frontage road, confusion hit me all of sudden and my vision started to blacken.  So I quickly pulled back into the parking lot and tried calling Tim. I was trying to use the voice command feature and it kept wanting to call other people. GRRR! I was about to pass out, and was trying to my convince myself to fight through it and make the call or actually succumb to it since "resting" felt like a idea. At that point, I pictured my doctor and nurses telling me to call 911 if I ever feel faint or confused since it could be a bad reaction to the chemo.  So thankfully I got a hold of 911 and they sent out an ambulance.  That was my first ride in an ambulance and hopefully my last.  After fluids and antibiotics for possible pneumonia, I was sent on my way.  They originally wanted to wait until I got my COVID test back, but they realized that I was stable and was feeling better so there was no need to wait and they would call me with the results.  I'm glad they agreed to let me go because it took 48 hours to get my results! FYI-the results were negative!

On Tuesday, I went into school to meet my mentor who is FABULOUS!!! She has been so unbelievably helpful along with the rest of my team and math department.  I was also able to see my classroom even though I will spend most of my days teaching at home until October 30th and time will tell after that. It feels so weird to not set up a classroom, but it has been a God send since I have been too weak to go into school the rest of the week. I know virtual learning is not ideal for a variety of reasons, but it truly is a blessing for me because it gives me the opportunity to teach safely at home.  Had I been forced to go into school, I wouldn't be healthy enough to return until at least October.  Trust me, I know there are so many reasons in person learning is better, but in our middle school alone there are over 1,500 students and our district truly wants to ensure the safety of our students and community. Thankfully, we have had some optional training over the summer and there a variety of resources online for ideas.  I just keep telling me we are all in it together!  Yes, at times I get overwhelmed and cry thinking of juggling it all while fighting cancer which seems to be harder to bounce back, successfully fulfilling a new teaching role and teaching my own children at home.  Thank God for amazing family and friends who continue to help us hold it all together!

In fact, I write this from a hospital room because I had to get a blood transfusion because they checked out my blood counts yesterday and my hemoglobin is still too low.  Thus explaining my tiredness...this is more than just "tired" this is complete exhaustion which also makes it a struggle while trying to prepare for teaching. Although, it helps, in the fact ,that if I start getting nervous, I'm usually too tired to deal with it so I'm forced to nap.  Thankfully, as usual, I could count on help in a moment's notice when my doctor called today and set up an appointment for 11 this morning to get a transfusion. My mother in law came to watch the boys, Sarah drove me to the hospital in Milwaukee and Tim came from work to meet me  here.  All the while, my parents, sister and friends were texting checking in on me. 

Thanks for the reminder, Kris: Isaiah 40:29 "He strengthens those who are weak and tired."

Monday is the first day of teacher meetings so I'm praying this boost of blood is all that I need! I never needed that on my supply list before now?!  2020 is so crazy!

Matthew West's song, "Strong Enough" is speaking to me now.

https://www.youtube.com/watch?v=knuHDPbE5es

We are strong, when we are weak. God will give us strength.  I know this is an extremely difficult time for ALL of us and this may be the lesson is we need to learn.  Rely on each other, but more importantly God.

Also, could you please pray for my brother in law's sister, Debbie Bree.  She too has been struggling with Stage 4 cancer and she has been having a really difficult time this summer.  She really could be lifted up in prayer for healing and good news.  Thank you!

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