Thursday, May 11, 2017

Cancer Will Break Your Heart

Cancer Will Break Your Heart...literally.

When Emma was diagnosed I was a healthy person. I had no need for a doctor's office and I was rarely sick. Now 3.5 years later I am dealing with a heart condition. You see, cancer literally broke my heart. All these years of anxiety and stress have put a toll on my heart and I have developed a condition where my heart quite simply stops beating.

Thump thump...thump thump---------------THUMP

It is scary and it hurts sometimes and I am fearful that if I cannot limit anxiety it will become an even larger problem. It is weird to think my heart stops beating several times a day, that alone gives me anxiety, which makes my heart worse, so I get more anxiety...see the problem?

Recently in a twin support group I am on a mother discovered one of her young twins has a rare and aggressive cancer. Watching her go through the process of diagnosis, treatment options, port surgery, trying to line up doc appointments so you only have to do one long trip, and childcare for her other kids has put me in a state of reflection. All the times I was given life expectancy, drug reactions, long term side effect risks came rushing back to me.

About two weeks ago I was called dramatic. Someone literally no longer wanted to be my friend because my life is too dramatic. That is not rare. Typically friends just disappear in cancer. They cannot handle seeing sick babies or they were too self centered before cancer so when I stopped reaching out they just faded into the background. In these years of fighting friends have come and friends have gone. Now I watch one of my friends start to lose people she loves. For some reason watching it happen to someone else it hurts just as much as when it happened to me. I tell her the same thing I told myself; that not everyone is strong, that people leave because they can (and we cannot), that some people are just jerks but inside my inner b-word is telling them not to let the door hit them on the way out.

Why? Because it is people like us that will get your back. We are the ones who understand the value of a hot meal when you are too sick to cook. We are the ones who know that a random and unexpected gas card in the mail can bring a traveling medical family to tears. We are the ones who offer to take your healthy children while you go to the doctor's office or recover from surgery. We hope you never experience those trials but when or if you do you will be sad you lost a friend like us. Your loss. To my new Momcologist friend, hear me when I say it is THEIR loss. Hold your head high.

So here is my PSA for all of you healthy or stable people out there. If you cannot handle our "drama" then just leave. If you are brave enough to tell us in a nice card that it is too hard to watch but you wish the best that helps. What not to do is tell that person to their face that they are too dramatic. At first it hurts and then we get pissed because we did not choose this life.

If you can stick it out then just a simple text on a random day to let us know you care or a well timed card like planning for it to come on the day after chemo. Bring them a meal, send a gas card, offer to watch her healthy kids. At the end of the day she is the one you want in your circle. Have her back now and she will have your back later. After all, are we not one large collective beating heart of humanity? Love on her or let her go.

As for my heart, right now it is broken but I have faith it with time it will heal. It just means it is MY time. Time to focus on Mommy. Now that the girls are both stable I have put them in an amazing school, I went back to work, and I have lined up self care like going to the gym. My heart will knit itself back together and let go of the horror and pain and anxiety of the last several years but it will happen slowly. In the meantime listen to this amazing song, it sums up what cancer families feel and helps give you a glimpse into our thoughts...sometimes we need to just crawl into the fetal position and cry. You Don't Know

Saturday, January 7, 2017

Love Is An Open Door

Emma's new medication is a long journey, I thought it was time to fill you all in. Emma has debilitating PTSD and ADHD as well as ODD (yes that is many letters). We have been experimenting with several medications since her chemo days about 18 months ago. In that time we have tried four different medications to help with her anxiety, night time panic attacks, and focusing in school. Each had it's side effect that was less than desirable; some caused migraines, most made her even more hyper, and my all time favorite was one that made her talk so fast and for so long (5 hours nonstop) that she hyperventilated.

I packed her up to go back to her doctor to discuss what else we could try after a horrible PTSD meltdown in Target's Pharmacy about her medications and he mentioned that the only thing left to try was an adult antidepressant. I was less than impressed. This poor child has been through enough and I was not about to subject her to addictive adult strength anti-depressants. I expressed my concerns and he had them as well so he gave me a physician's recommendation for CBD. He told me he has only suggested it a handful of times to his patients but it would be a better alternative for Emma.

I began to research children's CBD oils and came across Jayden's Journey. I had heard of them before through documentaries and word of mouth through Stanford, our chiropractor, and documentary films on the cancer industry. I walked in and immediately I had someone helping me figure out how to help Emma. It was about two days before I saw a difference; she was calm, she was kind, she was compliant, when it normally took her 3-4 hours to fall asleep at night now she was out happily in 10 minutes, she was not waking in terror at night, and teaching her in homeschool was more pleasant. I saw a huge difference, a light switch reaction. Suddenly I was kicking myself for fighting this answer for three years. I knew it might work, other cancer kids were successful, but somehow I had to exhaust every single mainstream option before trying this controversial treatment.

Why am I sharing now? Because I want to save other families from struggling as I did. I wish I had just been open minded years back. Now I know better, I know that this works and I know that Emma is happier than I have seen her in a long time. This week we ran out of our supply while trying to fundraise to buy more of the $200 a month oil. Overnight she reverted back to "Before Emma". She was weepy and angry and waking up at night screaming in pain. Again I felt the Mom Guilt. It was my fault she ran out. However, I did learn through default that this is the answer because stopping just for one day she flipped the switch again.

I know I am asking for help to keep her on this medication. I realize that some people feel strongly against any CBD etc. If that is you please know that I am not asking for you to financially support this new medication. If you are morally against CBD that is your stance and I respect it. I am not, however, opening this up for debate. Emma has been through Hell and this helps her, she is happy and kind and has a chance at some type of normalcy on this treatment. Any negativity will not be answered, we respect you and we hope you respect us in return. If you are interested in learning more I highly suggest looking up Jayden's Juice. It is a great product.

Thank you again for caring so deeply for Emma and our family.
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