Saturday, April 13, 2013

3 months pancreas free!

 Hi faithful friends and family,

I have heaps of good news to share.  Fasten your seat belts and hold onto your socks, because this past month has been a crazy ride with a few bumps.  Also, get comfy, because this is not going to be a brief update; there are just too many special details and I don’t want to leave out any.

The last time I posted an update I had gone 10 days without pain.  Well, this pain-free stretch lasted 21 days and I was experiencing euphoria like never before.  It is hard to capture, but after such a long period of time with daily pain -  and the fear of daily pain - the absence of pain made me feel like I was flying.  Maybe this is what Isaiah was referring to when he said, "Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint." (Isaiah 40:31) I could think and do things without being physically, mentally, and emotionally consumed with pain.  Praise be to God, I was also sleeping, eating without nausea, continuing to go for daily walks outside, not feeling the grogginess of daily pain medicine, and my blood sugars were behaving.  In addition, some snags with my insurance paying hospital bills and approving the correct quantity of medicine all got resolved.  Can I get an Amen?!  I am even getting a reimbursement check.  Also, a visitor from Pittsburgh came to speak at our church. His wife graduated from my alma mater.  While she was there, one of my dearest friends from Ohio served as her thesis advisor. These connections make me feel closer to friends far away.  

Palm Sunday I was singing Hosanna and waving my palm branch with more joy and thanksgiving than in previous years.  I was on top of the mountain and there wasn't a cloud in the sky!   

Then...

On Sunday night, March 24th, I had a horrible attack of pain.  These are called phantom pains, because the source of the pain is gone (in my case the diseased pancreas), but the pain paths are still active and the pain is very real and feels like a pancreatitis attack.  Very quickly my pain level went from zero to 12 (on a scale of 1-10).  Thankfully Jack was with me and got me my breakthrough pain medicine and within an hour it was under control.  It may sound funny, but I felt out of shape for dealing with pain.  It felt more painful to me, because I had gone 3 weeks without pain.  However, the worst part was that I no longer felt invincible.  Like an earthquake, I had tremors of pain throughout the next week.  Did I mention this was Holy Week?  Not a great time for a minister’s wife to feel weak.  I heard one minister refer to Holy Week as holy-moly week.  Praise be to God, I not only received the strength I needed to get through the week, but I was given a burst of energy for Easter weekend to enjoy and celebrate.  Emotionally, my discouragement was instantly transformed into encouragement when friends from Lancaster, PA arrived for a visit

Easter weekend was full of celebration and provision.  The weather was beautiful, flowers were bursting with color everywhere, and a missed turn lead to an amazing discovery that a lot of natives to this area don't even know about.  I have to go into extra detail here for a second.  

After missing a turn, our friends spotted a nature center and asked if we could stop there.  There were a lot of fascinating, hands on activities and live animals inside the center.  The family visiting us had asked about fishing.  I had no idea where to fish, or even get a license for that matter.  Well, this nature center had free fishing poles to borrow and only charged $6 for 12 big pieces of bait.  They didn’t even need a license to fish off the long pier that led out into the sound.  Talk about provision!  The boys were able to fish, while the rest of us stayed in the wildlife center.  In addition, we got to meet a beautifully vibrant turtle who only gets fed twice a week. Her feedings take place at noon, and it just so happened that we arrived at 11:45 AM on a day the turtle gets fed.  Any earlier or later and we would have missed this experience.   I love when God takes care of the details and I am able to see it.  I am afraid many times God does take care of the details, yet I fool myself into thinking that I am responsible for "making things happen".  

Another detail God took care of on Easter was the weather. It was drizzling all morning on Easter Sunday, but the rain stopped and the sun came out in time for an egg hunt.  I know the Easter egg hunt would have been fine with rain, but it awe inspiring to see it rain in the morning and rain in the late afternoon, but pause for a few hours to dry the grass for the hunt.  

The holy week services were also saturated in provision and God's handy work.  Jack preached on Maundy Thursday and at the evening service on Easter Sunday and God clearly provided the messages.  The services were woven with themes carried by the music, the Scripture, the litany, the prayers, and the sermon which were all done by different people.  I love reinforcement and I view it as affirmation.

I crashed physically and emotionally the next day, Easter Monday, April 1.  My friends were on their way back to Lancaster, Jack was back at work, and my energy was non-existent.  I quickly took inventory and decided a day of rest was due.  I also reflected on my recent, joy-filled interactions with children, and remembered Jesus' words to have faith like a child.  Goodness, I have some work to do!

On this same day, I found out my dad's mother (my Nana) had fallen and broken her hip.  This was no April Fool's joke.  I got to experience being on the other side - feeling far away from a loved one who was undergoing surgery.  I felt helpless.  Thank goodness prayer is not limited by spatial or geographic boundaries.

I am notorious for underestimating the time needed for a project or for recovery.  My one day of rest, stretched into a week of twice-daily naps.  Taking a shower wiped me out.  What was happening?  I felt isolated and alone.  It is hard to be around people if you don't have the energy to get out the door.  However, when I am really tired, I tend to pray more and read.

During this week of recovery, I began reading a book entitled, one in a million: journey to your promised land by Priscilla Shirer.  Priscilla talks about the strong parallels between the Israelites being freed from Egypt, journeying through the wilderness, and arriving at the Promised Land to being freed from sin, walking in our own wilderness of circumstances and choices, and how to arrive at the land God has promised us.  I quickly realized that I have been freed from the bondage of pain, and I see that miracle as the parting of the Red Sea.  However, like the Israelites I have quickly forgotten the miracles and provision and started to grumble and complain.  Why am I so fatigued?  Will I ever have the energy to be gainfully employed or to raise children?

Thank goodness for reality checks.  I am only three months out from major surgery - healing takes energy, so fatigue is normal.  I felt like a newsflash went through my brain in big, flashing neon letters: "You are free from daily pain, and you are complaining about being tired?" Really?!  I had gotten away from an attitude of gratitude and I was sinking fast.   I took a step of faith (my faith sometimes feels like the size of a mustard seed) and asked someone I don't know super well if she would mind getting together and praying with me each week.  Time and time again, God has shown me that following His nudges (aka obedience), leads to blessings.  However, for some reason I get wimpy and become concerned with whether I will look foolish.  I took the step and am glad I did.  I needed to be re-centered for the week ahead. Of course, I anticipated a better and easier week ahead.  After all, I had rested for an entire week.

However, on Sunday, April 7th, I began experiencing insomnia.  My stomach started to feel crampy and I began having flashbacks from last April.  On April 9, 2012, almost one year to the day, I had an ERCP at Johns Hopkins in Baltimore.  The ERCP was supposed to be an outpatient endoscopic procedure, but mine went horribly wrong.  Instead of ending the pain by putting a stint in my pancreas duct, I had a pancreatitis attach and my intestine was cut.  It took 3 days to get the pain under control.  I had a NG tube put down my throat.  They stopped giving me my regular daily medicine, and had to be moved to ICU as a result.  I had a pick line inserted in my arm for nutrition and was finally discharged from the hospital after 13 traumatic days.  The more I try not to think about it the more the memories and details haunt me.  I keep telling myself, "I am safe. I am pain- and tube-free now."...so why the fear?  I prayed and prayed for peace and to be able to move forward, but I felt not only stuck, but in a downward spiral.  

On April 8th (now we are back to the present 2013), I had a cleansing cry and let out all of the emotions and feelings I was trying so hard to suppress.  I realized if I wanted to have freedom, I had to forgive.  I had to forgive the physicians at Johns Hopkins that made mistakes or weren't responsive enough to my needs (in my opinion).  Praise God for His help in giving me the strength to forgive, because it was hard.  Reading the parable of the unforgiving debtor (Matthew 18:21-35) helped me to put things in perspective.  To paraphrase the parable, a king forgave a huge debt (approximately $20 million) to servant "A" who turns around and grabs servant "B" by the throat and demands he repay his debt of $20.  God who knows everything I have done and everything I will do (good, bad and ugly) loves and forgives me.  Surely, after SO much forgiveness has been shown to me, I can forgive others.  

Tuesday, April 9th came and I was at peace.

Wednesday, April 10th came - woohoo - 3 months without a pancreas!  Still, my energy was limited, but I was rejoicing in my pain-free state.  I noticed all week that my blood sugar levels had been lower and my energy was dwindling.  I thought maybe I need to beef up on my carbs, so I did.  However, by Wednesday afternoon, I felt like getting out of my chair would be impossible.  I really wasn't feeling good.  A voice/thought entered my head that said check your temperature.  I did and I had a fever.  I rarely have a fever.  I checked my blood sugar.  It wasn't going up like it should have after all I ate.  I started feeling shaky and like I was going to pass out.  Jack was in meetings and I didn’t want to call him, even though I was SCARED!  I texted a friend who was going to the church and asked if, when she saw Jack, she could have him call me.  I called a neighbor who wasn't home, but, by the grace of God, she called another neighbor who was able to come over to my house.  She sat with me until Jack came home.  Jack was supposed to lead a class that evening, but the senior pastor said, "Go, we can cover this."  I realize not all bosses would be so understanding.  I am blessed!

Afterwards, I felt embarrassed.  Did I overreact?  Was I being a bad diabetic?  Should I have had a more secure plan in place?

I went to bed April 10th feeling defeated and fear started to creep in.  Could I ever be in the house by myself?  What if this happens again? I couldn't sleep and this was my fourth night in a row not being able to fall asleep until 2 am or later.  I was in not in the mindset to be thankful, so I believe that the Holy Spirit was nudging me to thank God.  I started saying, "Thank you, Jesus" over and over.  The more I said it the more at peace and calm I felt.  

Guess what?  I have been able to sleep each night since then.  I even slept through a severe thunderstorm that hit our area at 3 a.m. Friday morning.  Unfortunately, the storm woke up Jack, which didn’t make for an ideal drive to Charleston for all of my follow-up appointments.

Friday, was a marathon of doctors in Charleston.  I saw a psychiatrist (it is a requirement of transplant patients) who I met only once before.  The last time I saw this lady was in November, after I had fasted and had 16 vials of blood drawn over a two hour period.  I was concerned about the surgery and wasn't really in the mood to talk.  Now that the surgery was behind me, I felt much calmer and wasn't weak from significant blood loss.  The psychiatrist was helpful, validated my feelings, and gave me great encouragement.  She said I was in really good shape physically and emotionally for being 3 months post-surgery.  In some ways, I don't have perspective on what is normal, so hearing from others who have seen patients undergo the same surgery gives me that perspective.

Next, I saw the surgeon who said I was a poster-child for the surgery.  He is not concerned about my fatigue, because "after chronic pain and major surgery you aren't going to just bounce back - your body is healing and that takes time."  He also said that many of his patients who are 6 months post-surgery are not doing nearly as well as I am doing now. 

The nutritionist said eating more frequent, small meals will help with my energy, but echoed the surgeon in saying that fatigue is normal 3 months after major surgery.  She also gave me some new vitamins to try.  

The endocrinologist (diabetes doctor), explained that when your immune system is fighting a virus, your blood sugars are going to be lower.  He said that I reacted perfectly when I started to feel shaky.  The best thing to do when I am sick is to rest and stay hydrated.  The endocrinologist asked if I would be willing to talk to another doctor who wanted to meet me.  She couldn't believe how well a person without a pancreas could be doing.  I couldn't believe a doctor was excited to see and meet me?!   

All of my doctors said they don't need to see me for 3 months.  After seeing them monthly, this feels like a huge vote of confidence.    

Wow!  I came home last night feeling pretty humbled.  I had been grumbling about my slow progress and it turns out I am way ahead of schedule.  I still feel weak and am fighting this virus, but I am back to soaring.  Isn't our God awesome?

I have three trips scheduled in the next three months.  I won’t be traveling alone, though, and I will be with family at all times as we celebrate birthdays, weddings, and friendships.  God knows I like to celebrate.  The good thing about being with family is they will help remind me to rest.  However, I greatly appreciate your prayers as I continue to listen to my body and have grace with myself.  Also, I would appreciate your prayers for discernment and open doors as I begin to think about future employment.

Lastly, I read that it was 3 months into wilderness before the Israelites heard from God at Mt. Sinai.  I look forward with anticipation to hear and discern God’s voice. 

I appreciate you reading this extensive update.  I hope I was able to convey how your prayers and encouragement have been heard and appreciated.  I am a strong believer in the power of prayer and am always delighted and honored to pray for you or someone you love. 

Blessings,
Becky