Blog-iversary

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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…

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A new day

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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.

And we’re off…

With chemo that is. Or rather on it? Ev started on the 20th. His first day after was good. Nothing noticeably different, but hopefully it is doing what it should. I recorded his symptoms pre-chemo and am keeping a log of how/what he is doing each day. That way we can keep track of things that are possibly helping him.
I ordered Ev curcumin vitamins from Amazon and got them yesterday. This is an ingredient in the popular Indian spice turmeric. Evan isn’t a fan of Indian cuisine so these vitamin should do the trick. According to research curcumin inhibits tumor growth. I’m looking to help Evan beat this as much as possible and that seems like a solid step in the right direction.
Lots of alarms set to help remind us of meds and patch changes. We are taking things one day at a time, which is what anyone can do no matter their situation.

MGMT, not just a great band

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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.

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? 

‘Breakthrough’ treatment boosts survival in battle with deadly brain tumor

Fred Hutch scientists report early success with novel gene therapy to attack cancer while protecting healthy cells.

via ‘Breakthrough’ treatment boosts survival in battle with deadly brain tumor.

 

A lot to contemplate.  Evan and I met in Washington and are familiar with the area.  There are family and friends there.  UW is ranked #1 cancer hospital west of the Rockies and number seven in the country.  Ranked behind the likes of MD Anderson and Johns Hopkins.

On Monday we are going to take a reduced list, derived from the top tier hospitals we received from the ABTA (listed on my last post) and ask Evan’s doctors which they would recommend.  One step at a time we will get there.