Last Week

My appointment last Thursday went well. I had x-rays, and I got the tape taken off my back (didn’t really feel it ripping off, which was probably a good thing). It has always been painful for me to view my own x-rays, because although I can feel my scoliosis, seeing it in black and white is another thing altogether.  I think it is easier to pretend it doesn’t exist when I am not looking at the evidence.  I can feel it, but seeing it is another thing altogether.  It makes it more real, and that reality cuts through everything, even happiness.

My upper back still itches more than anything, although it is not constant like it was with the tape on. Two nights before my appointment, however, I felt a pinching in my right shoulder. It hasn’t gone away yet, although the physician’s assistant told me to just give it time. I don’t feel it at all when I lay down, so that is how I am spending most of my time these days.  In the weeks before my surgery, I was having stomach trouble. I went to my primary care doctor a couple times because it got to be too much, and it was going on for too long for my personal comfort. I was losing weight. They eventually took my blood to test, and that is how I found out that I am anemic. I am taking iron supplements now, and although I feel tired most of the time, I am lucky because I can rest when I need to.

On Friday morning, I had another appointment to check my stomach issues out further. I have had heartburn since high school, even though I didn’t know what heartburn was back then. I suspect my scoliosis causes this. I can see and feel why it would, even without viewing any x-rays. I can’t really stand or sit up straight unless I force myself. I am not a very active person by nature, because everything else I do takes so much energy that most of the time I end up having no spare energy at all. After I saw the orthopedic surgeon and had my back x-rayed, he wanted a CT scan to get a clearer picture of what was going on.  I mean, it was clear on the x-rays.  We could see the broken area and we could see exactly why it was hurting where it was (in the x-rays, the top of the rod looked like it was going to poke through me, which made me wince…) But the surgeon wanted the CT to be sure.  So he got it.  And he found something weird.  A shadow.  An ultrasound revealed it to be a huge benign tumor, thank goodness, and now I have to go see another doctor for that.  Happy, happy, joy, joy.  When it rains, it pours, right?  But through it all, I trust God…

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”  ~ Isaiah 41:10

On a brighter note, it is now 75 more days until my brother Patrick gets married!  So much to do, so little time!

God Has This

My surgery earlier this month went well.  Originally, my surgeon was saying that I could go home the same day, but then when he saw me pre-op, he said he thought about it, and wanted me to stay overnight so that they could pump me full of antibiotics.     My favorite part of the whole thing is that I do not remember having a breathing tube in place.  I think the breathing tube is the absolute worst part of waking up from any surgery.  It is impossible not to think about it too much, to focus on it, and when I do that, I tend to hold my breath because it hurts to breathe.  This doesn’t work very well with a breathing tube stuck down my throat either, because it hurts just as bad not to breathe.  This time, however, my throat was dry, but it didn’t exactly hurt.  I was grateful for that at least.

My Papa was there, as well as my parents and sister, waiting with me before I went into surgery.  Laying on the gurney waiting to go into surgery, I had no pain.  It was nice.  Of course, I knew it was short-lived, but I enjoyed it just the same.  The nurse started me on some fluids, and I was covered with heated blankets.  I love warm blankets!  It is my favorite part of being in the hospital, if I had to say what my favorite part was.  At one point, I said goodbye to everyone, they kissed me, and left, only to have me lay there, waiting.  Then the surgeon came and said, “Where is everyone?  Where’s your dad?”  Ha.  Luckily, my dad came back, and that was when my surgeon said that he thought I should stay overnight.  It was a minor surgery – it took about one hour to remove the broken piece of rod and cut down the other one on the right side of my spine.

After I initially woke up after the procedure (it was a short and quick one), I slept on and off for the rest of the day.  My brother brought his family to visit.  Aliza brought me  a little stuffed animal of hers and one of her books (it was no mistake that the title of said book was, “God Watches Over Us”) to borrow, I guess. She also drew me a little picture and told me that it said something like, “This is for my Danielle, because Aliza loves her very much since she buys me presents.”  It made me smile.

I normally do not like jell-o very much, because it reminds me of hospitals and a number of other reasons, but that day I was grateful for its coolness, as it soothed my parched throat.  Where I had no pain before the surgery, I now felt like yes, I had been sliced open, and things had been done to me.  So. Much. Pain.  I do not know what they were giving me as pain medicine, but I was surprised at the smallness of it and the fact that they were just giving me one at a time.  I felt how women in labor must feel:  give me drugs and give them to me now!  Getting up to go to the bathroom was pure torture, so I only did it when I felt like I couldn’t hold it in any longer.

Needless to say, it was a long night.  Are nights in the hospital ever anything but long?

The surgeon came by the next morning to check up on me.  He asked me how I was.  I told him that I hurt.  He said he would switch my pain medicine to something that was stronger.  And he did.  I did not like it when he had me sit up so he could take the tape off my back.  Twice, I felt something wet (blood) run down my back and I screamed out, “Wet!”  I was out of that hospital before lunch, cheered by the fact that my brother’s best friend’s wife had their baby girl that morning.  Welcome to the world, Shiloh Mae!  I can’t wait to meet you in person!

It is now two weeks later.  Whereas I do feel somewhat better, I can’t seem to shake the feeling that this surgery won’t work in the long run.  I am to the point where I only take my pain meds when I absolutely need to, mostly at the end of the day, when my back begins to ache.  I can’t help but worry endlessly – what if I am right back to where I was before my full spinal fusion in 2010?  What if we have to find a surgeon in Seattle to do it again?  It is really hard work, recovering from spinal surgery, but this time, it was easier.  Minor surgery, quicker recovery.  Major surgery, longer recovery.  My scoliosis is a tricky thing, because it is the result of the radiation treatments I received back in 1983, and I would be hard-pressed to find another person out there who can say that.

I have an post-op appointment Thursday morning.  I am looking forward to it if only to get the blasted tape off my back.  It itches so much.  But I know I am blessed.  All of my complaints are minor.  And when the pain gets to be too much, I just lay down and curl up with my cuddly dog.  I worry, but I try not to.  I know God has this.

Never ever give up

Even if we do not know where we are going to end up, God does.  Often when something doesn’t work out the way we wanted it or even at all, it’s because God has something better in mind.

After I graduated college, the back pain began.  Subtle at first, when I walked a distance, I would feel an awful twinge in my lower back – then in my left leg, and then finally in my right leg.  Pain spreading.  I knew what it was, but I was in denial.  No, I did not want another back surgery. But I was just putting off the inevitable.  Sometimes the pain got so bad that I’d just collapse on the floor where I was and sob.  I wasn’t strong enough to deal with physical pain when life was already so hard for me.  I didn’t want it, so I cried out to God to take it away.  I went to my back surgeon and told him I couldn’t take it anymore.  X-rays showed what he had expected to see – the lower portion of the rod that was fused to my spine was breaking down.  So I was scheduled for surgery, in which he’d just fix that one portion.  I should have spoken up, should have told him to fuse the whole darn thing.  Maybe that would have saved me from the nerve pain that followed.  It was worse than awful.  I thought I was gonna die.  I was put on steriods – did two rounds of them, but it didn’t help, except on the first day, when the dosage was the highest.  I didn’t want to lay down because getting up was completely unbearable.  I screamed.  I cried.  I begged God to end it.  But for some reason, He didn’t.  He was saying, I am holding you.  Be strong and courageous.  You can do this.  We can do this.  It will be over soon, I promise.

Finally, finally, after four weeks of this torture (and it was torture, believe me), my surgeon went back in and saw that bolts and screws or whatever were all loose and that was what was causing the horrible pain.  He went back in and fixed it and after another nine days (added to the five already served in the hospital that summer) in the hospital, I finally went home in a back brace.  I had to wear it for 3 months.  So not my favorite thing to accessorize with, but if it saved me from pain, I was all for it.  Except I had lost 10 pounds when I couldn’t afford to and the brace poked me endlessly.  It rubbed the skin off of my hips.  I took to shoving rags and socks in there to protect myself.

After I was able to shed the brace, I was all right for a while.  But then, one morning, I moved to get out of bed and I felt it again – pain.  Not the same kind of pain as before, but still pain, nevertheless.  Eventually, it went away so I didn’t think too much about it.  Except the next morning, it was back.  And the next.  And the next, for about two and a half years. I told myself it wasn’t so bad because it went away, often within ten minutes.  But it still wasn’t pretty.  I had a really hard time getting to the bathroom on time in the morning with my back hurting the way it was.  One day, I decided that I’ve had enough and was scheduled for a 4th and hopefully final back surgery.

Now I am painfree.  I still have and will always have scoliosis, but I don’t have pain associated with it anymore.  I never gave up.   But because of the pain, I couldn’t really focus on writing.  I had to wait.  God had more in store for me than just pain, but I had to wait until my head was clear and my heart was free.  And then, I started researching childhood cancer, trying to figure out what went wrong in my case.  But maybe it doesn’t matter, because God has His reasons even if I don’t know them.  And I’m here, aren’t I?  So I started following the cancer journeys of kids on Facebook, and learning about different kinds of pediatric cancer.  I started reaching out to others.  I think I always knew that this was going to be a part of who I’m becoming.  I devoured fictional books about kids with cancer and tried to write stories about it.  And now, after all that, I know I’m on the right track.

When times get rough, God is always right there with you.  He is even carrying you, like that famous “Footprints in the Sand” poem says. His ways are not our ways, and no amount of wishing or praying for something different can turn Him around.  He always, always, always has our best interests in mind.  Things may not seem right or fair at times, but keep trusting.  God knows what He is doing.  After all, He has done it before, throughout the ages, and we haven’t.  The world is still here, and tomorrow, it will be here still.  It may try to take us down, but God is right there, reaching out a loving hand,  and whispering, Never ever give up.