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.

Shunt surgery

To clarify a shunt, at least in Evan’s case, is inserted to move fluid from one area, the brain, into another. Basically the brain is locked in a finite amount of space. When there is pressure something has to give. Blood from vessels or fluid. This is normally put back in the bloodstream but sometimes there is too much going on for that to happen.
So the shunt will have a valve on it. When the pressure in Evan’s brain gets to a certain level the fluid will be transported along the shunt. It is inserted behind the ear and down into the abdomen cavity.
He should experience immediate relief and his vision will improve. If Evan don’t have this shunt inserted he could face permanent damage and loss of his vision. If they treated the swelling with medicine there would be no guarantee a shunt wouldn’t be implanted later and we could lose time on starting chemo. It seems as though Ev will still be able to start chemo on August 10th barring infection from surgery.
Evan will have surgery tomorrow. He checks in at 10. The process will be about ninety minutes. ICU won’t be necessary this time and most patient are able to go home the next day. There is a lot to process before his surgery, but there is some good that comes with it.

Shunt

How terrifying to get a call saying you have to get to the hospital ASAP. This happened today. Evan’s surgeon looked at the scans from the opthyamologist and he needs a shunt inserted. So today is a CT scan and meeting with the surgeon and tomorrow is the insertion of the shunt. This should help with his vision, but ultimately we don’t know what the heck is going on until we get to the surgeons. So in two hours we will have some more information…

Fundraising Aspirations

After a suggestion I have started looking into creating a fundraiser to help with…well everything.  Evan is unable to work due to his condition.  It seems like the ideas of something growing in a person’s brain makes him unemployable.  But honestly, it is the best for his health right now.  We have a small daughter to take care of and bills to pay.  Medical expenses and traveling add up quickly, as I am sure many people experience.  We are looking into sperm banking and storage, which adds up.  At the end of September we are moving and will need assistance with that as well.  I have a degree and am licensed to teach high school in North Carolina, which I have for three years.  I went back to work in January as an end-of-school year hire.  Addi was taken care of by Evan, whose health declined rapidly toward the end of the semester, so I am not able, nor comfortable going back to work in the fall.   

At first I was seriously against asking for help, but upon further discussion and thought I figured creating an online fundraiser to ask for help could be beneficial for many reasons. 

  1. It could take stress off of us financially, which would relieve stress period.
  2. This is a way to let people help us if they are able to.  If I ask my mom, sister or grandma for help they will do whatever they have to in order to help, even if they don’t necessarily have it.  This provides a way for those to help if they are able to, no obligation or awkward conversation.
  3. People want to help, but don’t know how or aren’t aware of our situation.  We live in a townhome that has no extra room.  There is family that wants to come visit and help, but aren’t able to do so because of the distance.  This provides a way for them to contribute, if able, and to help in their own way.

So, if you find yourself in a similar situation here are a few links I found that can help. I am currently looking into cancer outlets, but there are options out there for all.  Giveforward seems pretty solid and straightforward to use for people that need help with medical related issues.  The layout seems to mimic facebook or at least link to it.  There is also a lot of options through the American Cancer Society to explore. 

What are your thoughts on fundraisers?  Any platforms you’ve used that seemed to have helped? 

Knowledge is power…that can cause fear

So I decided to use this amazing thing called the internet and put it to use by researching Evan’s newly diagnosed condition.  Optic nerve swelling is called papilledema.  Upon reading the symptoms, diagnosis and treatment I was encouraged and then boom-my breath caught and I am frustrated again.  Bottom line is that the treatment for this swelling is to determine and treat the cause.  In Evan’s case that means treating his grade four brain tumor.  If chemo doesn’t help then what?  He has already two parts of the trifecta: radiation and surgery.  Chemo is coming soon.  So not to scare anyone, but knowledge is power!  Instead of waiting for the doctors to call I decided to gather more information for myself.  Now, I am not sharing this with Evan or the family until we do hear from the doctor, and I don’t think I am reassured by this knowledge, afterall I was hopeful that this could get solved by steroids, but at least I know…what the condition is called?  I will have to continue figuring out how much information I should look into with all of this.  For instance, one thing I am not interested in anytime soon is survival statistics.  I caught a glimpse one day and swore I wouldn’t look again.

The symptoms are as follows (described by Evan and confirmed by the wide web of information):

  • double vision
  • blurred vision
  • limited vision-Ev lost peripheral vision
  • nauesea
  • vomiting
  • headaches
  • pressure behind the eyes
  • whooshing sound–this one really got me because this is the sound Evan always hears before a seizure and it bothers me because this is a symptom….this is why I do want to research, but because I am not going to get a medical degree with credible sources it also scares me

If you have multiple symptoms listed above go get checked out by an ophthalmologist.  Ask for a visual field test.  This prompted another test that showed the actual optic nerve.  I tried to recall what it was called and research it, I believe it was an EVT but couldn’t find anything online…nonetheless from there depending on if you have a preexisting condition will depend on the next step.  Evan had an MRI done two weeks ago, but the ophthalmologist may suggest a new one.

All I can recommend to you is that you speak up and make sure your provider hears all of your concerns and symptoms.  Keep a detailed log of your symptoms.  Record what it is, the date it started, the time, the occurrence, what you were doing before you experienced it, the duration and if anything you tried relieved the symptom.  This could help on multiple levels.  If you think you have a serious issue, bring it up! 

I can’t tell you how many times I have been asked how Evan figured out he had a brain tumor (I will save that story for another day).  But no, just because you have a headache doesn’t mean you have a tumor growing…record the details folks!  Do the research, but don’t go crazy and self-diagnose.  Knowledge is power.

Accidental Activist

I’ve always wanted to be an activist.  When I was younger I imagined chaining myself up to trees, in college I could see myself joining PETA or advocating to stop the slaughter of dolphins…or the inhumane treatment of circus animals (I could go on with my ideas)…now that I am the wife of a cancer patient in a southern state I have begun to really explore my true activist calling: medical marijuana.  I just can’t get over the stigma that comes with the word marijuana.  Sure, there are those who use this plant to get high, but there are true medicinal benefits.  Specific strains are created and cultivated to aid certain symptoms.  This medicine certainly has more use than a recreational high.

Imagine seeing your significant other in pain, defeated, depressed and overwhelmed.  Then, seeing your child running up to him to try to hug him but he is too weak to even pick her up.  Your partner tries to distance themselves because they don’t want to snap at you or feel guilty because you are going through this too.  One thing can help all of that.  Yes, the pain is there, but it’s manageable.  The anxiety and depression: gone, at least temporarily.  Their mood becomes uplifted and they can close their eyes without worrying about pills or chemo or the future.  Because in that moment everything is easier. 

Inspired by Killing Cancer TedTalk