Ready for another chapter? Me too. :)
Chapter 7: The Roller Coaster Ride
While I waited for the gene test results, I found myself stuck on a roller coaster ride of emotions. The fear and anxiety of all the unknowns sent me rushing downhill at an alarming speed. Then out of nowhere I would receive a tender mercy that would thrust me upwards to the crest of the next hill. That would allow me enough time to smile and catch my breath before careening down to the bottom again.
The emotional ride left me with a constant, throbbing ache in my head. I spent half of my time as a sobbing, blubbering mess. When I wasn't crying, I was trying to keep myself busy so that I wouldn't linger too long on all the possible outcomes that were roaming through my mind.
At times, I wondered if I had just been having a bad nightmare. I kept hoping that I would suddenly wake up and resume my normal life. After all, I didn't look sick. People who have cancer look sick, right? I didn't feel sick either. Other than some fatigue, I felt like I could run a marathon, or maybe a 5K. Yes, let's stick with a 5K. (I detest running.)
I did my best to try and NOT think about cancer, but found it impossible when every conversation I had with people started with, "Do you have any news?"
"Nope, no news yet," I would have to report time and time again.
(excerpt from my journal) Day Nine: "I... am... exhausted. Emotionally, physically, spiritually--you name it. I am tapped out. I just keep trying to stay busy and keep a smile on my face, but today was hard. I snapped at my kids a lot...then I got angry with myself. Our lives could turn completely upside down in a few days. I should be making every moment count. But I couldn't today. I just couldn't put on the happy face anymore and unfortunately my family took the brunt of it. I'm sorry, guys. Tomorrow is another day. I will try to do better...I just want to cry all the time--cry because I'm scared, cry because I'm angry, [and] cry because I just want this nightmare to be over."
I became extremely impatient with the whole waiting process. I needed answers! Because I was a planner by nature, this cancer thing was really cramping my style. I couldn't move forward with any plans in my life, particularly the plans for my upcoming preschool year. (I taught preschool in my home.) My life was on hold and I did not like the music that was playing in the background.
As the days crept by and the turmoil in my heart grew, I started down a dangerous path of self-pity and despair. "I don't want to do this!" my mind screamed. "What if I am not strong enough?"
However, it seemed like every time I started down that dark path of self-pity, fear, and doubt, my faith in Jesus Christ steered me back in the right direction. I found myself craving more spirituality. I devoured my scriptures, prayed every single minute of the day, and scoured the Internet for words of comfort.
It was in those times of reflection that I received some of the most tender mercies. I was led to verses of scripture such as "These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." (John 16:33)
Other tender mercies came in the form of earthly angels. My family and friends surrounded me in a bubble of love. Everywhere I turned I found someone giving me words of encouragement, sending me flowers, or bringing me food--lots and lots of food. That's one thing that we humans do when someone is suffering. We think of our favorite comfort foods and we share them. It's awesome. Especially when it involves chocolate.
My favorite earthly angel was my husband. When he came home from his business trip I felt like I could breathe again. It was so good to have him by my side. He was (and continues to be) the calm to my crazy and my reminder to take things one day at a time. Chemotherapy? Surgery? Radiation? Don't worry about it. We'll cross that bridge if and when we come to it.
He was right of course. Worrying would not change anything. The only thing that the worry was doing was causing me to lose precious hours of sleep, which, in turn, turned me into "grumpy mom." That was when I decided that I needed to find a place of peace and harmony within myself and ditch the roller coaster ride for good.
Thanks for coming back to check out another chapter! If you want to read what's in between these chapters and the rest of the story, click here or here to purchase your own copy. :)
It feels like it was a lifetime ago when I received the first copy of my book in the mail. After over 2 years of agonizing early mornings and late nights, the story of my journey with breast cancer was out there for all of my family, friends, and the few other people who have stumbled across it, to read.
I'm so grateful for every ounce of love and support that people have given me. I wanted to throw in the towel so many times, but then the Lord would send a tender mercy in the form of the inspiration I needed to overcome writer's block, someone telling me that they couldn't wait to read my story because they needed help with a trial they were facing, or just the knowledge that I knew this was something I needed to do.
In February 2016, I was finally able to share my story in book form and had two amazing book signing events. The memory from those nights I will cherish forever. It was so much fun. (Click here and here to see the pictures from those fun nights.)
Why the walk down memory lane?
Why the walk down memory lane, you may be wondering? Well, I have gone radio silent about my book for a long time now. I just felt like the only people that were seeing any of my obnoxious posts about it already knew about it and were probably like, "Ya. We get it. You wrote a book. Move on with your life."
I was never able to break out of my own little realm in social media to really get my book out there, which is fine. It was disheartening and frustrating for a long time, but life goes on and I am over it. I have said from the start that writing this book was never about making money or becoming well-known or anything like that. My only desire has ever been to get this book into the hands of those who may need a boost of inspiration to help get them through a tough trial. It took me a while to get to the point where I could say, "Maybe everyone who has needed to read it has read it for now."
So life has gone on. I have gone back to school and started a part-time job which leaves me very little time to write blog posts...which I miss terribly. But lately I have been thinking that maybe I should start posting excerpts from my book on my blog. It would be very easy for me to copy and paste, and as long as I keep the rambling before the posts to a minimum (already failed there), it should be a fairly simple thing to do.
Why post excerpts from my book?
Chapter One: 8-19-11
August 19, 2011, started out beautifully. I watched with excitement, nervousness, and a little bit of sadness as my oldest child, Josh, got ready for his first day of junior high school. How did he get so big? I could remember him toddling around on chubby little legs learning how to walk. Now I had to drop him off at the junior high so he could learn to walk through the seemingly endless supply of hallways and staircases there.
We pulled up to the school and after kissing his mother on the cheek, he jumped out of the car. With confidence and excitement oozing from every ounce of his 7th grade body, he strode off without even so much as a glance back in my direction. I suppose I had no need to be nervous. He was ready for the challenge.
My girls still had a few days before their school would begin. We had plans that day to enjoy the last of our summer freedom. Those plans included a figure skating lesson for Emma, and after looking at our bare cupboards, a trip to Costco as well.
After Emma's lesson, we were piling into the van when my phone started to ring. I was expecting a phone call from the Women's Center at St. Mark's Hospital because I had gone in for a biopsy the day before. I knew that this would be the call to tell me that the tissue from the lump in my right breast had been tested and the results were exactly what we thought they would be; it was just a fibrous mass and nothing else.
"Hello?" I said as I was juggling my phone, my purse, and attempting to buckle Ellie into her car seat.
"Hello?" Is this Desirae?" asked a kind, yet businesslike voice.
"Yes, this is she."
"Hi, Desirae. This is Dr. O'Neill. We got the results back from your biopsy and I am very sorry to say that things do not look good. I hate to
tell you this over the phone, but there were some cancer cells that showed up. I'm very sorry." (There was silence on my end for what felt like an eternity as my brain tried to process this information.) "Really. Wow," is what I finally choked out.
Have you ever wondered what you might do or say if you are told you have cancer? I have thought about it on occasion, but it was nothing that I pondered too deeply about. Cancer was something that happened to other people, not to me. I didn't have time for cancer in my busy life. I had groceries to buy, kids to cart around, and a life to live. I simply could not add cancer to my plate, so I got in my car and started driving. Maybe I was hoping that I could drive away from this stunning turn of events.
While I was driving, Dr. O'Neill was still talking away in my ear. I was hearing words like "MRI", "Grade 2 Cancer", "Surgeon", and a million other things. Why didn't I pull over and start writing these things down? Because I was in shock and avoidance mode, that's why.
With Dr. O'Neill still talking in one ear and my girls asking me, "Mom, what's wrong?" in the other, I knew that I needed only one thing- my husband. I needed him to wrap his arms around me and hug me tight. I also needed to hear him say that everything was going to be all right. Suddenly my driving had a purpose and that was to get to his office as quickly as I could.
Now that I was headed in the right direction, I could concentrate a bit more on the conversation with Dr. O'Neill.
"I will call Dr. Mainwaring to discuss some things with her. I will also arrange for you to come in for an MRI tonight. I will get back to you soon," she said.
I tossed my phone on the passenger seat and tried to keep my wits about me. I did not want to start crying while I was driving. The tears stayed in check until I pulled up to Mark's work. That was when the dam broke and I couldn't hold them in any longer. I could sense my girls'
nervousness increase when they saw the tears rolling down my cheeks. I told them, "It's okay. Everything is okay. I just need to talk to Daddy for a minute."
I called Mark and told him that I was sitting in the parking lot and that I needed to see him right away. When I saw him through the glass doors of his office building, I flung my car door open and ran to meet him. I tried to form the right words to say while the tears rolled down my cheeks. "They found cancer. They found cancer," I kept saying over and over again. I was trying to remember everything that Dr. O'Neill had told me, but it was all a jumbled mess in my brain. I know that Mark must have felt overwhelmed with the scene before him. He had his sobbing wife clinging to him and shouting the word "cancer" over and over again. The faces of his three bewildered girls were pressed against the van windows; the looks of fear and confusion clearly present. They were trying to make sense of what was happening to their crazy mother.
I am sure that he was also trying to find the right words to say. With this scene laid out before him, he did exactly what I needed him to do. He hugged me and told me not to worry. He said that we would just take things one at a time and figure it all out. We hugged for a long time. His embrace was rejuvenating. I did not want to let him go because I felt safe in his hug and I knew that as soon as I let him go, I would have to face this new horror head on.
Eventually, we stopped hugging and I was able to gain some composure. I wiped the tears away and told him that I would let him know when I heard back from the doctor. Then I sent him back to work, holding this new information like one would hold a porcupine- not quite sure of how to handle it. Finally, I got back into the van and the girls and I were off to Costco because I didn't have time to deal with cancer and we needed groceries.
And just like that, Chapter One is over. Stay tuned for more excerpts soon!
Yesterday was my 6-year "Cancerversary" and I didn't even post anything about it.
Which is kind of weird because I have posted something every year until this year. But I just wasn't feeling it yesterday. I thought about it being my "cancerversary". I even thought about things that I could post, but when it came down to it, I just didn't want to.
Maybe it's because I am still trying to hang on to the lazy days of summer.
Maybe it's because I was too busy living the "mom life" by doing yard work, house work, and trying to squeeze out every last drop of summer time family togetherness.
Or maybe it's because I don't really feel like counting anymore.
Or at least, I don't feel like counting the years anymore...just my blessings.
And I could spend the rest of my life counting my blessings and never run out of things to count.
That is something that the past six years have taught me, and that is something that I will spend the rest of my life talking about.
Life is hard, but life is good.
The past six years have taught me that my job as a mother is my absolute most important job...ever. Teaching my children about the Savior and His gospel, helping them to be kind and generous, loving them, and being their biggest fan...those are the things that I need to focus on. Am I perfect at it? No. Do I try hard every day? Yes.
I am a mother in a partnership with God as I have been entrusted with His children.
I have been reminded over and over again that I can do hard things when I ask for heavenly help.
I Can Do Hard Things.
I have learned that every single day I am breathing is a gift from God and that I have a purpose here on earth. Some days I forget that and those are the days when I have panic attacks and feel the anxiety creeping in. But the days that I remember the bigger picture--the eternal perspective--those are my favorite days.
Each day is a precious gift from God.
I have taken a scripture to heart that has helped me through some pretty tough times. That scripture and so many more will continue to help me as I live to not only endure this life, but enjoy it as well, no matter what lies ahead.
D&C 6:36 "Look unto me in every thought. Doubt not. Fear not."
And finally, I have learned that I am surrounded by goodness. I knew that before, but I cherish it more now. My family, my friends, my surroundings, they are all precious to me and I thank God every day for them.
There is truly beauty all around.
Yes, I have learned a lot over the past six years, but there is one thread that joins all of the lessons together.
One beautiful golden thread that is unbreakable.
I first heard of this foundation last month when Emma's volleyball team sponsored a fundraiser. As I looked more into it, I really liked what I saw.
Links to other posts you might like...
I thought this day would never come.
In the cancer world, the number 5 is magical, almost mystical.
You hear a lot of hype about hitting that 5 year mark. But in the research that I have done, 5 years is really not much different than 10 years, 13 years, etc. However, all of the initial survival rates are based on someone surviving for 5 years or more, and the likelihood of your cancer recurring is greater within the 1-5 year range. So, even though 5 years is not a big deal, it still is a big deal.
For me, any number is a BIG DEAL.
I still remember with absolute clarity the moment I sat across from my oncologist and heard him say
"Stage III Breast Cancer"
"the survival rate is around 70%."
Mark and I sat in stunned silence, trying to hold back the tears.
I was looking for a number much higher than 70%.
And while that conversation stunted my hope for a little while, it did not decrease my determination to kick cancer's butt.
And that's exactly what I did.
Although cancer has and continues to kick right back.
Even though I am still considered "cancer free", the lingering mental anguish still bothers me from time to time. I have talked a lot about my struggles with PTSD and anxiety issues and will continue to do so. It is so important for us to realize that our health is so much more than just physical. Our mental and spiritual health play important roles as well and we need to make sure that we are giving attention to all three aspects of our health.
So how are the 3 aspects of my health doing 5 years after diagnosis?
--I *try* to do some exercise every day, but let's face it, most days my exercise consists of meeting my 10,000 steps goal. Sometimes those steps include a little bit of jogging, but it's mostly just walking as I try to get everyone where they need to be when they need to be there. If I am lucky I remember to do some ab workouts and pushups AND I get to play volleyball once a week so that makes me happy. I do feel much stronger and although I don't really remember how strong I felt before cancer, I feel like I am every bit as strong-- and quite possibly stronger, in more ways than one.
--I still have lingering issues from my mastectomy including the dreaded "boob itch." (If you want to learn more about this, you'll have to read my book. :) I also have some issues that I have to deal with from my hysterectomy, including (getting personal here) low sex drive, vaginal dryness, and "phantom" PMS symptoms.
--Not to mention I still have my lovely melasma mustache, but whatever, I'm over it now. ;)
--I started taking an anti anxiety med called Lexapro. I have played with the dosage a bit because when I was taking it every day, I felt like I was almost too uncaring. I tried taking it every other day and that was okay, but now I have settled on taking 1/2 a pill every day. That seems to be the perfect balance for me. But I knew the real test would be approaching this day and time of year. In the past few years, I have always had my "cancer freak-outs" around this time of year. This year? Nothing. Maybe it's because I am that much further removed from that time of my life or maybe it's the medication. Maybe it's a combination of both. Who knows? Whatever the reason, I like what I am feeling.
--I am also on a good path of learning how to be more in control of my emotions. I attended BYU Education Week this week and nearly all of the classes that I took focused on how to take care of your mental health. I am looking forward to putting into practice some of the skills that I learned. I will keep you posted on how it goes.
--Before cancer, I was a very spiritual person. I had a testimony of Christ and his atonement. I knew that I was a daughter of God and that by trusting in Him I could do anything. After cancer, I KNOW with absolute surety that CHRIST IS MY SAVIOR AND REDEEMER. He atoned for MY sins, for MY sadness, for MY sorrow, for MY afflictions. He did this because he loves me.
--I had to learn the hard way that my spiritual health is the most important aspect of my overall health. If I don't nourish it and feed it, then it upsets the balance of my whole life.
--I had to learn the hard way that there are good things, better things, and best things that I can choose to focus on in my life. When I put the best things first, everything else falls into place, without fail. Some days I try to sneak in too many things that, although they are good, are not the best, and I always crash and burn.
**I always, always, always have time for everything I feel I need to do when I put the best things first.**
"you have cancer."
Today, I dropped this sweet girl off for her first day of Junior High School.
Life can change in an instant. Sometimes those changes are happy and good. Sometimes those changes are sad and difficult to understand.
But, guess what?
YOU CAN DO HARD THINGS.
When your world crashes down and the rug is pulled from beneath you, remember those words.
Take some deep breaths, cry a little or a lot, then get down on your knees and pray for strength.
It will come.
You will endure.
And all will be well in the end (and I am talking about eternity here.)
Wherever you life's circumstances find you this day, I hope that you can find joy, love, and happiness.
Because today is a great day to be alive.
Chemotherapy and Mastectomy
It was surreal to use those words when talking about something that I had to do. In the beginning I was still in the mindset that cancer happened to other people. But as I faced each challenge head on, I began to realize that this was really my life and I began to search for tricks that would lessen the discomfort or at least made it somewhat bearable. The plain fact of the matter is...breast cancer treatments (any cancer treatments actually) just suck, for lack of a better word. However, I was very grateful for advice from other survivors when they shared things that helped them. I thought, "Even if their tricks don't help me, what have I got to lose?"
So that is what I would like to do for today's post...share some tricks and tips that helped me before, during, and after my bi-lateral mastectomy (in layman's terms, I said goodbye to both of the ladies who had tried to kill me.)
Before Surgery Day
It's all butterflies and anxiety in the days and weeks leading up to your surgery. So many unknowns about the process and the pain that will follow. It's tough to keep your mind out of "worst case scenario land." But the thing that helped me the most was to just keep busy. Which is also easier said than done considering that you have probably just spent the last 4-6 months being hammered by chemotherapy.
In my case, I had four kids and a husband to take care of so I did not have a lack of things to do. Add to that my job of teaching preschool and really, keeping busy was not too much of a problem. The real challenge came often at night when I was left alone with my thoughts.
"Will they be able to get the remaining cancer?"
"How painful is this really going to be?"
"What if they find more cancer?"
"How painful is this really going to be?" (I was terrified of the recovery process)
You will have those nights where you just cannot control the anxiety and it will take over. My best advice is to just ride that wave and know that it will pass.
Keep praying to whatever higher power you feel helps you.
Keep looking for ways to ease other's pain.
Keep breathing...one simple breath at a time.
The day has finally arrived. It's time to say goodbye to "the girls." Everyone experiences their own emotions when thinking about this separation. I went through all the emotions...the relief that I would no longer have breast tissue in which to grow cancer, the anger that the cancer had descended upon me in the first place, and the sadness of losing an important part of me.
The emotional roller coaster is tough. There were two things that got me through the ride. God and my family. I hope that you have a spiritual connection on your journey. I know that there is a God out there who loves you and who knows the pain that you are going through. However you choose to reach out to Him, just do it.
Now for some of the small details that help...
*Get a good amount of sleep the night before your surgery. Take a sleeping pill if you need to.
*You will want to have a comfortable shirt to come home in. My mom made me two shirts that were lifesavers. It was a simple t-shirt that had been cut down the middle. She then put strips of velcro down the cut sides so that the shirt could be closed again. The best part of the shirt were the inside pockets that held my drains. If you are interested in having a shirt like this (and I HIGHLY recommend you have at least one) please contact me. I will hook you up, free of charge.
*Make sure you have people lined up to bring in meals for at least 3-4 days after your surgery. A week would be even better. Do not think that you will be able to handle it or just have your husband go pick up food. Ask for help. You and your husband will have plenty to keep you tired and busy as you both try to focus on making yourself as comfortable as possible.
*Head out the door and on to the hospital with a smile on your face...even if there are tears running down it as well.
Obviously the time immediately following your surgery will be a big blur. I remember people coming in and out of my room and talking to my kids via Skype, but that's about it.
I stayed only one night in the hospital. Depending on the type of reconstruction surgery you are having, you may have to stay more than one night.
Once you arrive home, please, stay on top of your pain meds. Don't try to be the martyr here. Take them as instructed, even if you are not in a huge amount of pain. The pain will last for at least 3-4 days. After that you will probably be able to just get away with taking Ibuprofen or Tylenol. Listen to your body.
Hopefully you followed my advice and contacted me about the miracle recovery shirt. You will live in it for the first few days. Lifting your arms over your head will be impossible and the drains will be obnoxious. I do not recommend purchasing a tank top with drain pockets. The pockets are not big enough and the tank top has to go over your head. Just know that you are not in any beauty competition. You are going strictly for comfort here.
Speaking of drains...I highly recommend having a lanyard to wear in the shower. You can hook the drains to the lanyard and then your hands will be free. Letting the drains just hang freely...I do not recommend that. It hurts. Go with the lanyard. (Which I will also give you free of charge when you ask me about the shirt. :)
Use this time to just take care of you. Hopefully you have family members, friends, church members, etc who can come and help you take care of children, housework and all of those other small details. Let them help. If you don't have anyone, reach out to your support group, your doctor, the hospital. There are people out there who want to help you. I hope you don't have to look too far.
If you know of anyone who is facing a mastectomy, please share this post with them. Give them my email address (which is email@example.com) It breaks my heart when I hear of people who are alone in this process and I will do anything within my power to help them or find someone to help them with their needs.
I have struggled to come up with something to write today and even as I sit here typing away, I am unsure of exactly what words I am going to share with you. This may set a record for being the shortest post I have ever written.
As I was pondering about my own journey and what would be helpful to share, I suddenly remembered the celebrations.
I like to call these moments S.M.I.L.E.S.-
Sweet Moments in Life that Empower the Soul
I think I have mentioned this before, but in all of the pictures that I have from the 18 months that I was in the active treatment phase of my cancer, I only have 2 pictures where I am not smiling- from the night we shaved my head and that was really because once my kids started crying, I couldn't keep my composure any more. But the majority of the pictures show a smiling me. Sure, sometimes the smile was hiding feelings of fear and frustration, but most of the time, it was a genuine "I am happy with my life" kind of smile.
It was because of 3 simple choices that I had to make day in and day out.
I chose to be happy.
I chose to celebrate each victory no matter how small.
I chose to rely on my Savior who always brings me eternal joy and happiness.
Okay, so this post turned out to NOT be the shortest I have ever written. I should have known my tendency to ramble would come into play. But I am happy with how it turned out and I leave you with 3 pieces of advice...
Celebrate the Victories.
Remember where your lasting source of joy and happiness comes from.
Today I would like to take you back to the beginning of my journey with cancer. Maybe someone who is reading this post has found him or herself at the crossroads of Cancer Ave and Where Do I Go From Here Lane. Or maybe someone you know is facing the treacherous hike with cancer. Either way, there is one thing that all cancer patients have in common...the moment of diagnosis.
There are a few things that I have learned in regards to my own moment of diagnosis that I would like to share with you. Hopefully my words will make that terrible moment just a bit lighter for you to bear.
The Date: August 19, 2011
As those words were spoken, time seemed to stand still and I entered an alternate universe. It was a place that I never dreamed I would be. Cancer happens to other people, right? I was only 33 years old with no family history. How could I possibly now wear the badge of "breast cancer patient."
But sadly, I did have to wear that badge and continue to wear it today. Although the words have shifted from "patient" to "survivor", I still feel the weight of it on my heart. My soul weeps whenever I hear of someone else who is given this badge to wear, and it is because so many badges are still being handed out, that I continue to write and talk about my experience. If I can help even only one person on their journey, then it will all be worth it. My hope is to help many, but I am only one person and will try to do the best that I can.
1. You are not going to die immediately, or the next day, or even the day after that. There is time to breathe and think and process the information. So my advice for step number one is...continue to breathe. One breath at a time. In and out.
2. It's okay if you don't know what to do. Every single person is different and every single cancer diagnosis looks a little bit different from one person to the next. If you are a planner, like me, then you will probably want to know immediately what "the plan" is to take care of the cancer. But the truth of the matter is, "the plan" generally requires some patience and careful consideration. Find a doctor that fits (and believe me, you will know which doctor is right for you. Intuition is a powerful thing) and then trust him or her to help you take the next steps.
3. Continue to live...one day at a time. Because I am a planner, the unknowns were killing me. I wanted all of the answers at once and I wanted to know exactly what I needed to do to kick my cancer to the curb. The only problem was, I started having tunnel vision and the only thing that I could see was the fact that I didn't have any answers. It took a few days and some wise words from my mother-in-law, but eventually I realized that I needed to continue living my life- eating, breathing, laughing, you name it. Just remember that you are alive and life is still good.
I am loving my second chance at life.
Every day is an opportunity to do good and to be a little better than the day before.
I love being a mommy.
It's my favorite thing in this world and my most important job.
What's Happening on
Come Follow Me
Survivor Sister Scoop
Tips And Tricks
You Can Do Hard Things
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