8%

Addi is now five.  I have married again and have a son now.

I remember thinking about this and being in disbelief that it would happen; however, life has continued on.

Addi has been gaining a better understanding of death lately.  Or at least she is more cognizant of it.  I knew this would happen, and yet I didn’t prepare for these conversations.  How do you talk to a five year old about death? Especially when not religious?  I have been thinking a lot about this, but often fall short of how the conversation should go until I am looking at a teary-eyed little girl that misses her dad.

I decided to look up glioblastomas just now.  Addi knows that Evan died because of a growth or bump in his brain.  I was just curious as to what the actual survival rate was.  I looked this up once after he was diagnosed and I remember sitting beside him and reading two years with treatment.  I walked out of the room bursting into tears and talked to my sister, who was four hours away, on a hill in my backyard just bawling.  I never brought it up to him.

I was so naive to think the outcome would be different.  8%. 8 % is the chance of being a 5-year survivor with a glioblastoma.  And now I spend the nights when Chris, my husband, is at work and it is just Addi, me and my nine-month old, telling her Daddy Evan is always with us and in our heart.  I am not writing this from a sad perspective, just thinking about how important it is to be informed and realistic.

I remember writing an entry about being an advocate for yourself or your loved one; you must also be an informed advocate.  This should be obvious advice; however, sometimes in situations like terminal illness we forget the obvious.

Advertisements

Okay

Today is a day that will never leave me.  One year ago I told my best friend it was time for him to rest.  I told the father of my child I would watch over our daughter and take care of her as long as I lived.  I told my husband I would carry our love with me to help me get through every day after.  I told the most significant person in my life that I had chosen and that had chosen me…I told him it was ok.  That I would be ok.

Here I am a year later.  Sometimes I believe it, but I am not the same; I am not ok.  I spent some time looking back on pictures of Evan and Addi and I from the time when we first moved to Mooresville and he started school: long before he began to fall ill again and we found out about his glioblastoma.  It was such a beautiful life and those memories are so precious.  I will cling to them when those memories filled with sorrow creep up on me.  I will try to.  But, most of the time I feel like I am a completely different person; I feel like there is a front that everyone sees that shows who I was that shows I am ok.  But I’m not.  It feels like that life was never mine because it was gone so quickly.  So much has happened in the last year and a half; sometimes it is difficult to remember those good times.

Here it is a year later.  Sometimes I believe I am ok, but I am not the same and I never will be and that is what is truly ok.  Evan changed me in so many ways.  He changed my life.  He made it have so much more meaning and I miss the hell out of him.  I always will.  And THAT is ok because he is worth it.  All of the pain I feel has a silver lining because feeling this way means I loved someone so passionately and so completely.

Control

I have been feeling very lost and overwhelmed. Some moments I feel like I am regressing in my grieving process, if that is possible. I don’t really know what to expect and I know there is no right or wrong way to feel. But, I decided I needed to fix how I am feeling so I examined my situation. Part of my disconnectedness is because I lost my husband. I had no control over that. No one did. It’s horrible. My life is completely different than it was eight and a half months ago. I have no control over that. Nothing can change that or bring Evan back. We didn’t break up, there is nothing to fix in our relationship. He had cancer. He tried everything to stay with me and Addi as long as possible. He had no control over his tumor though. It was reminding myself about that that made me realize I need to look at things that I do have control over and focus on those and let that empower me.

When we found out about Evan’s first tumor we both felt helpless. I was three months pregnant with our first, and only, child. We were about to celebrate our first year of marriage. I didn’t know what to say or what to do to comfort him, let alone myself. I knew this was something Evan had no control over. There was nothing he had done to cause this. This upset him, but it provided some relief to me. I knew it wasn’t self-induced harm. Evan wanted something or someone to blame, which is why I think he wanted to have a reason for why he got brain cancer. I can understand that. Now, that’s what I seek sometimes, but there is no reason, no anger. Anyway, when we found out he needed to start radiation he had the option to start treatment immediately at Chapel Hill, which is where they conducted his biopsy, or he could meet with new doctors in Wilmington, NC and get set-up for treatments where we were living. Starting them in Chapel Hill meant he would have to stay at the SECU family house close by the hospital and we wouldn’t see each other every day as I was teaching in Clinton and Chapel Hill was an hour and a half drive from there. Evan and I both felt helpless again. But I told him, you can’t control that you need radiation. What you have control over is where and when you start it. You need to focus on what you can control and make a decision and go with it. If you focus on the things you can’t control you won’t be able to do what you need to do.

Yesterday as I was thinking about this I realized I need to take the advice I had bestowed on my amazing husband. He decided starting treatment right away was the best course of action so he could have the best outcome. He began treatment at the beginning of September, just after labor day.

There is so much I don’t have control over right now. My emotions particularly. But, I there are some things I can control. It is important that I take ownership in what those things are and embrace them. Hopefully that will help me figure out who I am now.

10425532_637807743019493_4390395540196360620_n

help me figure out who I am now.

Silence

I’ve been silent on here for the last few days and today of all days when I need to be heard I don’t know what to say.

Evan had a seizure this morning, the first one in six months. But, it seems as though it hasn’t stopped and he has an infection that is doing some heavy damage. I am looking at him right now and holing his hand but he isn’t squeezing back. He is in intensive care and I’m here, but my mind has left me.

I know the idea was to use this blog to vent and explain what was going on but even though I have written a paragraph or two I don’t have the words to capture the situation or the emotions or my thoughts.

A new day

IMG_2752

Five days of chemo down.  Cycle one is under way, not to be completed officially until the 28th day of the cycle.  But, nonetheless today is a day to celebrate because Evan is feeling better than he was the last two days and no chemo pills for 23 days.  No vomiting today either, if I may add.  Addi enjoyed hanging out with Ev today, but she is quite congested.  I am trying not to let her slobber all over everything-especially Evan, but damned if she isn’t a daddy’s girl.  I am taking notes on how the cycle plays out so we will know what to expect next cycle.  I will keep you posted in case you are going through something similar or are interested in our story period.  Please share our story and our fundraiser page if you have a few seconds to click the link.    IMG_2711

snackalicious

Today is the third day after Evan’s chemo pill. He will take his fourth dose tonight. He was snacky last night before and after he took his chemo, against doctor’s orders. He was advised to take Temodar on an empty stomach, but he woke up later yesterday so he wanted to eat throughout the night. Instead of pushing back the time of his chemo he did as he pleased. Today he is paying for it. He hasn’t been able to keep anything down unfortunately. There are many reasons as to why today could be a rougher day than others, but tomorrow will hopefully be better. Ev is going to have his bad days and moments, but that’s to be expected.

I’ve been taking photos each night as he takes his chemo because I’m celebrating that he is fighting. Feel free to celebrate with us and your loved ones. I am so thankful to have this day with him and the other people I care about. I hope you are in a position to do the same.

MGMT, not just a great band

IMG_2688

Today is the day for Evan to begin chemotherapy.  He will be taking a pill known as temodar for five days of a 28 day schedule.  He gets blood drawn twice during this cycle and if everything looks good he will be all cleared to continue with temodar.  This will be a year long process.  He was able to get a patch to help with his nausea to ensure he is able to hold down his chemo.  

The neuro oncologist prescribed dexamethasone in an additional effort to control vomiting and to help with his energy.  This seemed to be beneficial.  Yesterday Evan had an appointment but afterward we went to the store together, cooked together and he helped clean up.  I know this seems mundane, but in our reality–or anyone with cancer–this is a big deal.  I think everyone is wound up to see how he will respond to chemo.  

One thing I discovered to ask about during my research was the MGMT gene.  Apparently this gene helps tumors respond more positively to chemo, but this gene was not found in his glioblastoma.  Nonetheless Evan has the IDH1 gene which generally results in a better prognosis; I will have to look more into that.  Just some things to consider if you were recently diagnosed and need some things to ask about. 

Right now I am on hold with medicaid trying to get some information on what we would need to do to get a second opinion that way if/when Evan decides he wants to look into another hospital I will know what needs to happen…and they don’t cover any expenses out of state so if we get a second opinion it will be out of pocket.  So, please spread the link youcaring.com/evanmyrtle and if you can, please donate so we can get a second opinion and possibly move to a new hospital.  Don’t get me wrong, Chapel Hill has been great, but Evan is getting the most he can at this point from them.  If he doesn’t respond to temodar we will have to go somewhere else.  I am trying to be proactive and get him to meet with another doctor just in case; I don’t want to wait until it is a necessity.