Blog-iversary

IMG_2321 IMG_2370 IMG_2380

Well, exactly one year ago I was laying in a room in the SECU house in Chapel Hill, watching District 9, contemplating the doctor’s appointment I would face with Evan the next day.  He was asleep beside me.  Addi was at our house three hours away with him mom.  We were going to find out what his new tumor was exactly–he had had a biopsy on July 10th and the results were in.  I was feeling overwhelmed and nervous and I wanted to write so I could have an outlet.  I wanted to create a voice for things I felt I couldn’t say and for things Evan couldn’t say or didn’t want to say (relaying news to family across the country was a rough task, let alone when you were dropping the C word left and right).

So, here it is one year later from restarting this blog and repurposing it.  I am sitting here now on a new couch in a new place.  A rescue dog is asleep beside me and Addi is asleep in the bedroom.  I have pictures now.  And memories.  And emotions.  I am so glad I have those memories and those pictures, but I wish I still had him.  Nothing makes this easier and sometimes when I look back on those moments it is harder because I am slammed with the reality that Evan was an amazing man, but he is no longer here.

It’s just a hard fact to have to face every time I open up and think about the memories.  I read something not long ago that said that hardest part about grieving and moving forward is that you want to live in the past. I feel so torn most of the time because that is true: the past holds my life with Evan, but I have our daughter, she is the present and the future…all I can do is try to find a balance

No snuggling to be had tonight unlike a year ago, unless it is with Addi, which at this particular moment sounds like a solid idea.  I remember cuddling to Evan and crying into his back while he slept.  I was so scared of the news we would get.  I was scared of what it would mean for him and for our family.  I was scared of exactly what happened but I never thought it would happen so soon.  Yet here I am.  Sitting on the couch, crying into his old NTI shirt.  So, on that note….happy blogiversary everyone…I’m calling it a night…

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.

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

F U Chemo?

Headed to Chapel Hill tomorrow for a follow-up appointment from Evan’s shunt surgery.  The appointments aren’t until Monday, but we are hitting them early so staying the night before at the SECU family house is just the ticket.  There’s a lot on my mind, mostly questions, since Evan will begin chemotherapy this week.  We will be meeting with a slew of doctors, but also a social worker in the cancer center.  She will be able to provide some info on what is available through the American Cancer Center.

Not much to really say at this moment…I am just trying to do some research.  It can be overwhelming because there is a lot of information out there.  There is no “right” treatment which is the problem.  There are survivor stories that detail their juicing techniques or their vitamin supplements or their FU to chemo and ingesting hemp oil.  What is the right thing?  What will help my husband?  I think just taking a deep breath and remembering that there are doctors that are helping and I should let them do their job.  I am going to invest in curcumin and a juicer as well as ask Evan’s doctors about the recently passed law allowing CBD oil for medical use.  Anything else I should consider? 

We’ve got the late night munchies…

I just got to see Evan for the first time since surgery. We had to wait until 3 for surgery. His surgery was about three hours, maybe a bit more before I got to speak with the surgeon.
Everything went as well as they could. We all know Evan is a unique case and this is no exception. It is rare to have hydrocephalus when a tumor is present but not blocking fluid movement. The surgeon can’t explain why this developed, but he believes it was necessary.
Nonetheless, Evan is feeling some relief behind his eyes already because there is no active pressure there. His vision has already improved a little and he is in good spirits. We just ordered off the late night menu and should be munching down by 11:15. He has pain around the two incision sights-one on the back right of his skull and one in his abdomen. He just left for an x-Ray to verify the shunt is in the proper place and working. If all goes well we will be out of here tomorrow.
What this means for chemo: Evan was scheduled to begin chemo on August 10th. Typically surgery would push it back, but the doctors don’t want to wait too long so if everything is healing well he should be able to start on the original date. He will have to come back before the start date to verify all of this of course, but it seems on track still.
I must say it touches my heart to have so many people out there supporting us through this and sending their good vibes and sharing our story. I want Addi to read this one day and see how tough her Mom and Dad are and how many people out there care and can be compassionate. Thank you from the bottom of our hearts.

20140731-223507-81307227.jpg

Take charge

Advocate for your loved ones. If they are sick or in pain, help them. Talk to doctors and nurses on their behalf. Case and point- we are an add-on for surgery today, that means Ev doesn’t have a scheduled surgery time because he was added last minute. We were asked to get to the hospital at 10 and then they put us in the waiting room. Evan is visibly ill, unable to hold anything down, and in pain (no offense babe, but you are looking a little rough-understandably). So people are coughing, playing videos on their phones, talking and what not; they are waiting. Evan looks like he is about to throw up so I promptly return to the nurses station and inform them about his condition and how he could use some IV zofran and IV fluids. Now, I know that’s a risky move. No one likes to be told what needs to happen, but I also can’t sit by when I know what can help. I have to advocate for my husband’s care. Luckily the nurses were sympathetic and could see in his chart that zofran is a prescription he gets at home. They agree with my line of thinking that IV would be best and move him into an open room and get fluids and IV meds started while we wait…at least he is more comfortable.