Losing my sh**

I had a conversation earlier with a dear friend and we discussed losing one’s shit. Not literally. Figuratively, although the former probably entails some interesting aspects. It got me thinking about times I’ve broken down. Now, I’m sure my mom or sister would say other wise, but it’s been a while considering everything that’s going on. I mean there are days when I need a few minutes to gather myself and my thoughts, but a serious breakdown is few and far between in my calendar. Ok, ok, I might have lost it over the phone with my sister in July after doing too much research, but I had to get it out so I just called her and let it pour. But allow me to explain why this is an exception and not a habit…

In my younger years I was certainly dramatic. I was the youngest child and one of the charismatic members among my friends. I surrounded myself with attention seekers, class clowns and my wrongfully outcasted peers. When something happened I generally reacted quickly and sometimes quite irrationally.

Call it growing up or falling in love or whatever you may, but when I met Evan that changed. As odd as it seems everything slowed down while our relationship was forming. I began to think more rationally even as my heart was behaving recklessly. Evan and I are very similar. I was used to being dramatic, but so was Evan and I toned my theatrics down because it’s hard for a relationship to survive when two explosions are likely to go off. I changed. Like I said, could be growing up, but I think it’s because I love this man so much that I wanted to do (and still do) whatever it took to make it work. So I stopped losing my shit.

When I got pregnant we were hit with some heavy stuff. I was forced to keep it together because I was pregnant. I didn’t want my baby to get anxious because I wasn’t taking care of myself or because she was feeding off my vibes. Pregnancy during ER visits and watching Evan go through radiation treatment has seriously shaped how I handle things now. If I lose my shit, I feel it all goes to shit. When Evan and I first started seeing one another I changed. He changed me. This situation has changed us, but the important thing is that we are still us and we are together through this, wherever it takes us.
So for now, and as long as it’s healthy, I will not lose my shit. Figuratively, and hopefully literally.

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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.

Doctors…

You go to the doctors looking for answers. New symptoms? Get a diagnosis. Everything still running right? Get a checkup. When you hear something is abnormal/wrong it is bittersweet. You think well, at least that explains symptoms XYZ, but then comes the reality that holy shit something is abnormal/wrong. Then the mind takes off in a million directions depending on what information the doctors reveal…or don’t.
With Evan’s appointments we are looking for an all clear for the next part of treatment, but there’s this anxiety built up because the next step is chemo. I feel like there are a million things to do or say to Evan to help him but nothing comes out because there is no right or wrong thing to do or say. Aside from I’m here and I love you.
If you are a family member or friend…or just want to send good vibes…that wants to reach out to let Ev know you’re thinking of him but don’t want to bother him then tell him that. I know people want to know how he is but don’t want to bug, but it is nice to hear you’re thinking of him. I found an article that lists some things you can do to reach out to cancer patients. There’s some good stuff, including things I’m going to try to do. Check it out here. Feel free to contact me too and ask questions here. If it’s too personal, send me a PM on Facebook or something along those lines.
Just waiting for doctors to come in…I know I am helping Evan and am doing everything I can to do so, I just wish there was more I was able to do.
Not to mention that he feels worse today than the day after his shunt surgery…

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?