Tuesday, June 28, 2011

Brain Surgery 1 year later

It's been one year since we found out the results from John's MRI that was performed July 2, 2010.  He'd been having headaches non stop, 24/7 for about 6 weeks prior, when his doctor felt that an MRI was necessary to see if there was something going on in that brain of his that we should be aware of.  I remember where I was, the day when John called me after his doctor told him what they found. He called me on the phone, I was home with 1/2 the kids, he had the other 1/2, at the 4th of July breakfast and flag raising put on by our church.

John:  Well, I got the results back from the MRI.

Me:  And???

John:  They found something.

Me: (My immediate response) Is it cancer?

John: No, but there's something there. I'll tell you when I get home.

Me:  Okay, bye.

My first thought?   Relief that it wasn't cancer. My second thought? What the heck is it, and does 'whatever it is' need to be removed?  I honestly can't remember the details of when he did come home and tell me what the doctor found from the MRI.  But the jist of it was this.... he has two cysts, one that's pretty large that needs to be removed, most likely.  The official name of the diagnosis is a Ventricular Tumor, or Arachnoid Cyst.  

Our first step in the process..... we take our DVD of the MRI to a neurologist, who does an examination on John, looks at his DVD, and tells us pretty much what we already knew. That step would have been nice to simply avoid, was a waste of time in my opinion.  The neurologist then directed us to a neurosurgeon who he felt would be 'the man' to take care of this.  We finally get the appt. with him, he looks at the DVD, but he's got a different reaction. Uh-oh..... I'm not liking this the more I listen to him and watch him.  

He proceeds to tell us what the neurologist couldn't.  The cyst itself isn't so much the problem, where as the location of the cyst IS the problem. It just so happens to be in the center of the brain, which is the most rare spot for a cyst to be.  He said that 95% of the time they will be on the surface of the brain, not IN THE CENTER. He proceeds to tell us that it needs to be removed, but removing it is the tricky part.  We are all for it, and figure, okay, it needs to be done, lets get it done. 

Me:  So is this like an outpatient surgery?
Dr:  (He looks at me like I've just asked the dumbest question on the planet). No... you'll be in the hospital at least 3 days.

He smiles at us and says....You haven't asked me how many of these I've done.

Us:  How many?

Dr:  None.

John and I both look at each other..... okay, not feeling so good about this now.  He proceeds to tell us that we need to think about this, if this is what we feel should happen, and that he himself is not convinced that this IS the cause of the headaches.  He orders a test be done by an opthalmologist, to make sure the optic nerve isn't involved.  Again, another appt. more weeks to wait.  Finally get that appt. out of the way, and fortunately, everything looks good, optically.

After some thought, both John and I are not comfortable with the first neurosurgeon, as good as he may be, to perform a surgery, in the center of the brain, where he's never been before.  We start to look for another doctor, another opinion.

It's nice to have friends that have connections. After an email exchange with a friend of mine, about this situation, she tells me that she will do some digging and find out where we should go.  This friend works at a law firm, and someone on the board of trustees told her for us to see either Dr. Delashaw, or another Dr. up at OHSU. We were told they were the best, they would help us. So that we did.

We got an appt. with Dr. Delashaw, who we were told was THE BEST neurosurgeon on the West Coast.  Just getting this appt. with him was a blessing, seeing how busy the man is, clinic is only on Friday's and he performs over 400 craniotomies per year.  It had been exactly a month since the MRI was performed, when we saw him.  Time's-a-wastin' in my book, so I was glad to finally see him, and hope for some answers, and that this man KNEW what he was doing.

The Dr. may not be the most personable, and he may go tanning, (nothing wrong with that, just when it's plain as day he's doing it) and seemed overly confident in himself (but hey, I want confidence if your going to mess with my husband's brain). He looked at the MRI DVD, came in to see us and spoke very clearly and blunt to us.

Dr:  You have a very large cyst (2 inches round) in the center of your brain, that is blocking the draining of the cerebral spinal fluid and you need to have it removed asap.  You also have another one in the back of your head on the surface of the brain, but we won't touch that one, it's so small and most likely not causing your headaches.

Us:  Okay, have you done this before?

Dr:  Yes.

Us:  So how's it done?

Dr:  I will cut part of your skull, take this tube down to where the cyst is, drain it, remove it, and allow it to drain for 24 hours.  

Us:  How long will this take?

Dr:  It's about a 4-5 hour surgery. You'll be in the hospital 3-5 days, recovery of about 6-8 weeks.

Us:  So what do we do?

Dr:  Get it scheduled.

Us:  Well, we're going to Hawaii in October, and we've got tickets and everything, can't change that, can we still go? (Come on now, I've got my priorities and I'm not gonna see this money go down the drain for the condo we rented!)

Dr.  You should be fine.

So, arrangements are made for surgery on August 30th.  My husband is going in for brain surgery.  Never thought I would say those words, ever.

During these two months of finding out the results of the MRI, and up to surgery, many thoughts entered my mind about the future.  The whole time, through all of this, John is telling me he's not worried one bit, his exact words.  He's probably the most optimistic person I know (except for when it comes to the direction of our country... but that's a blog post for another day) Was I worried? You better believe it. I have 4 children still to raise, we're self employed, in the midst of a remodel, my mom was 17 hours away in another country, and if something were to happen to John, he's got my house set up in home automation, and I haven't a CLUE how to fix anything that has to do with that. When the lights aren't working, HE'S THE ONLY ONE, literally, who knows how to troubleshoot and take care of it. In all seriousness though, part of me was scared, very scared. Very grateful that no, it was not cancer, that this was something that could be taken care of. But when you are given the news that this type of condition is very rare, and the location of it, well, it couldn't have been located in a worse spot. That is what scared me.  I don't care how talented you are with your hands in surgery, when it comes to the brain, if you don't have that, well, then, you don't have much.

Never once did I let my emotions get the best of me. I had to keep in control, mostly for my children.  We are very honest with our kids when it comes to things like that. They know all about their big sister, who died at 4 months of age.  This was just another trial that we need to be refined from, and what better lessons could they learn than by watching how their parents deal with it.  

I will never forget a friend of mine who came to visit me at my home a few days before the surgery. Before she left she was in tears, for me!  She told me that she just felt terrible about what was happening, and especially to someone like John.  That she felt we were so strong and wondering how we were keeping it together.  I smiled at her and said, "_____, I haven't even cried about this yet, so don't YOU cry."

Am I strong? I don't know if I would call it that. Sometimes I feel like the weakest person around.  Since losing my dad, then my first baby just two years later, I've had lots of time to dwell on the topic of strength.  I used to say to people, while dealing with McKenna's death, that I didn't have a choice, I had to be there for her, had to have faith that things would work out as they should.  But as the years have gone by, I understand more clearly now, that we all have a choice. We choose how we will react to trials. They can either tear us apart, or they can make us better people, and it's up to us how that all turns out. 

I also believe that none of us are immune to problems in life. No matter "how good" someone might think another person is, or how well you may live your life, trials come to us all.  Some have trials BECAUSE of choices they make, others have them because we have a loving Heavenly Father who knows there's something we need to learn from this. That is how I had to look at this trial we were now going through.  I remember telling another friend that I hadn't let myself think of the worst case scenario for the first month or so, until right up to surgery. I was getting scared.  John was as calm as could be, which is his temperament.  It's not mine.  Yet I never let my children see that.  I had to keep it together.  

The time for surgery came, and still, John was calm, ready to roll.  I remember clearly in the pre-op room, listening to the other patients who were behind closed curtains, but you could still hear every word.  I began to count my blessings as I listened to an elderly man go in for brain surgery for the 3rd time, to try to remove more cancerous tumor.  I wasn't dealing with cancer with my husband, and for that, I was immensely grateful.  I am grateful for trials in my life, that have reminded me of the many blessings I do have.  I also hoped that I could be as brave as that wife was to her husband with cancer if I were to ever face such a challenge.

 As I sat in the waiting area of the hospital, two good friends came to visit me, to occupy my time, bringing me my most favorite dessert, a wonderful giant lemon bar, and a yummy bagel sandwich.  What more could I ask?  Good food and good friendship.  They helped pass the time, for which I am grateful.  I know of many family and friends that prayed on his behalf and those that fasted for him.  His name was on the prayer roll at our temple nearby, as well as several others around the country.  I knew that not only was John in good "surgical" hands, but in the hands of the Lord as well, and that he WOULD hear the prayers of us all.  

I remember clearly how John looked before they rolled him away, and the stark difference after surgery when I was finally able to see him in the recovery room. The surgery was a success, they say.  The cyst was removed, but he was having a hard time coming off anesthesia.  He ended up being in the hospital the full 5 days, with fevers coming and going.  When you have been married to a very healthy man for nearly 14 years, who's never had major surgery before, you are not well prepared for the effects of surgery, especially after brain surgery.  He was in the ICU for 24 hours before he could get a regular room.  I had never seen him in such bad shape.  That morning he was John, the John (most of us who will read this) know, but after surgery, he was not well.  I was actually worried, after a few days, that he would never be the John I had married.  

I will never understand what he went through.  And it's hard for him to explain to me.  He says it's "like having a baby".  I used to get ticked when he'd use that remark in other conversation, but this time,  I understood what he was saying. You just simply do not understand what it is like unless you've gone through it yourself.  For days, he couldn't carry a conversation, he would stare blankly.  That got me worried. He did not want visitors, just wasn't up for it (and for someone as social as he, I knew he was not feeling well at all to turn people away).

We knew of someone who's husband died of brain cancer, and she and my other friend, who helped us get in touch with this doctor, both knew how recovery would be, but never told us. They didn't want to scare us.  Part of me is glad they never told us.  Yet from my perspective, it was an amazing thing watching him go through all this.  He was kind to his nurses, very soft spoken, and honest in how he was feeling. And it made me realize how truly grateful I was for him.  Not just as a husband, or father, but provider, and that if anything DID happen to him, that I would truly be missing out sharing the life of a truly good person.

I knew, that if John, after surgery, wasn't as political as he had been before surgery, that something very wrong had happened. Well, he was and is just as spunky politically as ever.  None of that changed.  Thank goodness.  He just wouldn't be the same John if it had.  But recovery was tough, tougher than he thought. He thought he could return to work a week later, but he understood that was going to be longer than he wanted.  However, he went back to work after 3 weeks, instead of waiting 8.  He is not one to sit around, and goes stir crazy if he has to.

You never know how the cards will be dealt. It's while the cards are being shuffled that we are being prepared for times such as these.  As a year has nearly passed since surgery, I reflect more on my many blessings.

*  The simple blessing of life
*  The blessing of talented surgeons
*  Friends who help comfort, feed you and your family, listen to your fears, and share in your burden
*  Family who will drop anything to help you, whether it be staying with my children so I could be at the hospital, or fasting for John's surgery and recovery
*  Medical advances...... entering the center of the brain? Who would have though that just a hundred years ago that was improbable.
*  Most of all, the blessing OF trials, because it is IN the trial where we learn the most about ourselves, and our willingness to submit to God.

Have things improved for John since surgery, health-wise?  He still gets occasional headaches, but not like before, he's had his 6 month MRI checkup.... everything looked good, and he'll tell you that he just doesn't have the strength that he used too.  But he's here, with our family, providing for us.  I couldn't ask for anything more.  And knowing him, I know that after he reads this, he'll try to get me to delete this post and say that I shouldn't write about him.

I can't believe it's already been a year, and because of that, it makes me appreciate even more, the time I do have with my family, 'cause I know, from experience, they can be taken from you before you feel it's time.  But it's in those moments that we seek deep into our soul, submit our will to God, and know that our lives ARE in his hands.  I'm just so grateful that his will was for our family to have their dad/husband, stick around.

1 comment:

  1. That was an amazing read Shell. I was around during that time, and I saw so much love between you two. John was so confident, and at times seemed like HE was the one who was trying to reassure everyone else. And you were so strong Shelley!

    Your family is a great example to everyone around you. I especially loved your last paragraph. So true. Thank you for sharing this beautiful piece with us.

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