Author: admin

Why Fighting The Big Bug?

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You may have wondered why do we call cancer “the big bug” or why our go to phrase is “fighting the big bug”… well when I found out I had cancer five days before Christmas 2016 and spent the night in the hospital when I was supposed to be at the airport picking up my son who was flying home from his first semester of college, I was challenged with how do I explain this to my children. How do I make sure they are not fearful? But also how do I present it so I am not lying…

I have always been very open with my kids because I do believe with knowledge you can find understanding and strength and that the unknown is much closer to fear. As an educator and Mom, it was also very important to me to find a way to explain to my 3 year old what was going on because I knew her day to day life would be effected greatly. We needed a means of explanation that was not only developmentally appropriate but also one that she could connect to and that we could increase the depth of her understanding over time. It took me a couple weeks of over thinking and stressing until I realized that “the big bug” was the perfect way to explain it.

See, my daughter had unfortunately had pneumonia around Thanksgiving and she felt really yucky. My Mom, told her she had a bug and we had ended up talking about how a bug was not really like an ant, spider, or centipede in your belly but just an illness or even more simply another way to say you are sick.

That Christmas break I was really sick. My stomach was horrible, my liver not functioning well, and I was in a lot of pain. Wallace, Mom, and I were also beat emotionally and scared to death. All we knew was that I had cancer and it was in my liver- we were waiting until I could go to Moffitt Cancer Center on Jaanuary 3. As you can imagine, our life was far from normal. Those who know me, know I am an Energizer Bunny of sorts and this totally changed my abilities. I struggled to eat and I could not keep up with the family on a simple walk.

So, one day, I sat on the edge of the bath tub where I was at eye level with my daughter and explained that I had a big bug that was making me feel sick and yucky. She immediately asked if it was like her bug and I explained it was bigger and the doctors had to figure out how to get rid of it. I told her I would be going to a big hospital in a couple of days so they could figure it out. (I have always tried to talk with my children a few days ahead of events so that we would have the opportunity to keep talking leading up to the event and I can answer any questions they have and also to prepare them if I will be gone or if the schedule will change.)

So, as you can imagine my daughter asked me many questions in the next day or two- what will the doctor do? How big is the hospital? Will they make you feel better? As you can imagine, I could not answer these questions. I had never been to Moffitt before. So, I just answered honestly saying I don’t know, but I will tell you when I get home.

I have had lots and lots of appointments, tons of scans, three biopsies, port installation, endiscopy, radiation and lots of chemo. Through all this I have explained to my daughter now 6 about it every step of the way. My daughter knows my port is so I can get chemo aka special medicine that is like bug spray to knock the big bug down, she knows that chemo is the medicine I need to knock the big big down, she knows I get CT, PET, and MRI’s to see if the big bug is bigger or smaller, she knows the radiation was to shrink the big bug in my hip so I wouldn’t be in pain and lots lots more.

We talk through it all at her level. It is important to me that she has a positive perspective. We do not talk the mortality or the end game. We will someday but I am hopeful it will not be soon.

She asked one time, why is it called a “cat” scan? It hadn’t dawned on me that she thought it had to do with the meowing cat. She now knows that cancer is the big bug but we still call it the big bug. I never fully understood her comprehension of the whole thing until around Thanksgiving this past year, she was driving with my big kid and I and out of the clear blue from the back seat she asked something to the effect of, “Mom- what happened at Moffitt the other day, is the big bug smaller?” (I had a PET scan) and miraculously I was able to say “it’s smaller” and through the rear view mirror the joy in her face and her huge smile just said it all. I had successfully communicated to my daughter that this was not a short term illness, to expect ups and downs, and to take every small victory with smile. I think I have showed her perseverance, grit, and commitment. I am so proud of her!

As we approach yet another chemo week, we have already started talking. She knows I have chemo next week. She knows it will be for three days. Her biggest concern is if daddy will be able to take me.

My husband decided to read my blog…

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So…. I had planned to write this post last night, but fatigue got the best of me (it is amazing how your stamina changes after lots of treatment). So my blog went live on Tuesday night then almost immediately, I started to receive feedback. I was so excited in my hyper super excited state (many may argue I am always in this state), I began reading messages to my husband. I had shown him my layout before going live, and had encouraged him to read it, but he seemed disinterested. I honestly wondered if my posts would be too much for him to read. This is not an easy adventure…. Well, I was wrong and my reading of responses to him must have made him excited, because on Wednesday morning as he was laying in bed half asleep, he asked how do I find your blog….

I thought he was forwarding it to someone, maybe sending it to his Mother, but no he was reading it and really reading it. After we got the kids off to school, he started to show me my spelling and grammar mistakes. I fixed them all. At this point in my head I was thinking if you would have read this when I tried to show it to you before I published the site, I wouldn’t have made typos…. I hate typos. But then, he told me to look at my About Me section and said something to the effect of- you haven’t been diagnosed with Pancreatic High Grade Neuroendocrine Cancer for 28 months. You aren’t telling the whole story, you are simplifying it. Then he encouraged me to write the whole story of my diagnosis because the simplicity of my current diagnosis does not explain the adventure we went on for the first 19-20 months where despite a couple biopsies, tons of pathological tests, scans, lab work, genetic tumor tests, 2 major cancer centers and many doctors no one could tell us definitively what type of cancer I had nor where it started. All we know definitively was that it was small cell, very aggressive, that my liver at initial diagnosis was 60-80% compromised and the odds were stacked against us. A third biopsy in the summer of 2018 (after the cancer grew and spread), confirmed the high grade neuroendocrine, and then the pancreatic primary site was only deduced when I visited a 3rd major cancer center in December 2018. I will post more in detail about this in a later post. It has been an adventure where unknowns have been more common than knowns, where I was lucky enough to have a pioneer in the cancer world find chemo that worked for me. I cannot wait to tell you about him.

My husband wants me to share the details- good, bad, and giggle worthy of the whole adventure. And my favorite comment just a few minutes after publishing my site was from my 21 year old (at college) who simply wrote “I am proud of you”. Words cannot express how grateful I am for my husband and kids who support me being me, bald or not. (Let’s see if he reads this before I post it, I am getting ready to hand the computer over…..) He did!!!

P.S. Thank you all for reading and commenting and most importantly for your prayers, positivity, and support. Last I looked I was at over 900 hits (I know I account for at least 40…. I check it often LOL)

Why Am I Writing A Blog?

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For the past 28 months, I have asked myself “Why Me” many times: Why am I the one with incurable, inoperable cancer? Why am I the Mom who may not get to see her kids grow up? Why am I the one who may not ride bikes when my husband and I are old? Why does my twenty one year old son have to worry about me when he should be being irresponsible in college? Why can I never teach in a school again?

Well, I have decided that if my family and I have been given this horrible sentence or what I rather call an adventure (although no one would ever sign up for it voluntarily), there must be a reason. I must have a purpose. I am not ready to stop teaching, mommying, wifeing, or daughtering. I believe my purpose is to help other parents who are living the cancer life by sharing my experiences, strategies, and HOPE.

I also hope I can raise awareness about the need for more research for rare cancers. We have come so far with cancer research and treatment. Yet, there is need for more treatment options for low incidence cancers. I hope I somehow, by some miracle can influence more studies about small cell high grade neuroendocrine cancer that originates in the pancreas. No one else should be told when they have young children that statistically they have one year to live and there is no cure for their illness.

(You may notice that I use the word “may” not the word “will”, because I refuse to give up HOPE. I am realistic, but I am hopeful that it is not yet my time)

You think I am AMAZING???

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For the past 28 months, not two days have passed when someone hasn’t told me I think you are amazing, you have the best attitude, you are so positive… And all I can think in my head how in the world can having “a death sentence” aka incurable cancer be amazing. I am not finding the cure for cancer, I am not teaching children how to read, I am not feeding the hungry, I could go on and on. All I am doing is living the only way I know how and that is by looking forward, by having HOPE, by trying to be the courageous, hands on, and driven woman and Mom that my husband fell in love with, by trying to be part of every aspect of my children’s day, by not giving in and not giving up. I am not amazing, I am just moving forward and trying to tackle every fear, every doctors appointment, every infusion, and every scan with the same GRIT, courage, and determination that I want my children to have when they grow up.

My children are being dealt a future that is not fair and not right. No one should have to watch their mother fight a incurable- ultimately terminal- illness. And at this moment my children know I am FIGHTING THE BIG BUG., they know I am weaker than I used to be and there are things I can’t do. They are part of this whole adventure. They learn by example. They know I am strong, that I don’t give up, and I hope and pray that I am providing the foundation of the strength they will need to persevere through the future.

I am not amazing. I am a Mom and a wife who has HOPE, who believes in miracles, and is battling highly aggressive incurable cancer. I have no other option but to be positive and keep moving forward.

It will not be ok…December 20, 2016

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I will never forget the words, “It will not be ok” although they may have been “you will not be ok”. My response to the doctor in the ER was, “it will be ok” and she replied “it will not”. My life changed in an instant. I was no longer in control of my life (my son just turned 1- how could I have cancer- let alone cancer that metastasized). My husband, my children, and my Mom’s lives will never be the same. Since that day, December 20, 2016, when I went into the ER with abdominal pains and came out with cancer that had already metastasized/spread to my liver, our lives have revolved around cancer and the fight to keep me here.

Over the past 28 months, I have learned that I will have some form of treatment for life. That statistically when I started life expectancy was 1 year but I was younger and healthier than those who are typically diagnosed. That my cancer (which took 2 years) to fully diagnose and identify the primary site (site where the cancer started), is incurable and inoperable. I have completed 16 cycles of chemo equaling 48 days of infusion which equates to over 11 months of treatment. So far, I have beat the odds and knocked the cancer down twice. But, it has come back again and spread more and I am back in chemo.

There is so much that I want to share, but I will take it slow… My life has changed monumentally- the only thing that is important is being here with my family, being present, and making memories.