Saturday, November 3, 2012

November 3...MUSC update -> improved quality of life on the horizon

Dearest friends and family,

I apologize for the delay with regards to my appointment on October 26th at MUSC.  It has taken me some time to process and am still in the midst of processing.  However, a LOT of answers to prayers have occurred in the past week.

I should preface by sharing the past month has been a roller coaster of pain and emotions.   I have had good and bad days.  On good days, I have a few hours of pep and the pain is minimal.  I feel on top of the world and life looks pretty good.  On bad days, I am in excruciating pain, have no energy and life looks pretty dismal.  I was very nervous about Friday's appointment at MUSC.  My prayer was for direction, wisdom and hope.

God far exceeded these requests.  The staff at MUSC was compassionate AND competent AND organized.  The care of the physicians, nurses, PAs, residents and even registration employees was evident in their words, actions and body language.  We never waited more than 20 minutes between appointments.  We were walked from one office to the next and even given a hug by a nurse.  Dr. Adams (the pancreas specialist and surgeon) was open to different options, but ultimately there is only one permanent solution and it will provide me with greatly improved quality of life.  "Quality of life" is what my heart is yearning for and I don't want to have surgeries that only provide me with temporary relief.  I want to be well so I can return to work, take care of others, be a good friend, be a helper for my husband and eventually be an active mother.  Every week it is becoming more evident that my quality of life is decreasing and the harder I fight to be strong the weaker I become.  

The plan is to have the total pancreatectomy with islet cell transplantation in January at MUSC.  I will become a diabetic and be in the hospital 10-30 days.  The expected recovery time at home is 6 months.  Thus, by July I should be feeling pretty good.   In some ways July seems like a long way off, but knowing there is an end to excessive pain and exhaustion is a huge source of hope.

Jack preached this past Sunday for the first time at our new church home.  His message focused around wounds and scars and our 3 choices.  1) Stay stuck in the past and shackled to fear. 2) Pretend everything is perfect and project an airbrushed image. OR 3) View our scars and trials as gifts and opportunities to relate to others and tools in our ministry as we follow Jesus and place our trust in the LORD.  The third option is ideal and what I am striving for.  I am not a saint and certainly fall into option 1 or 2 frequently.  God has placed some amazing role models in my life over the years that have revealed their scars to me.  While we don't have the same scars, being able to relate is very helpful and healing for me.

Thus, as much as I would like to focus on the good days, I want to be authentic and that includes sharing the challenges.  Right now I am trying to stay as comfortable as possible on pain medicine.  As mentioned before, the challenge with the pain medicine is it makes me very drowsy and my brain foggy.  Having no energy and jello for a brain is difficult when trying to meet new people and get settled in a new home and community.  Thus, I tend to stay home and feel pretty isolated and alone.  I have also started to have a lot of pain with eating causing my appetite to plummet.  The pain escalates my anxiety causing me to worry about how intense the pain will become and how long it will last.

My body is so weak from over a year of battling this pain that unexpected stress sends me into a tailspin.  This past week I met with my new primary care physician.  He wouldn't prescribe me medicine that I need for digesting food, or prescribe pain medicine or complete ongoing paperwork that is required for disability.  The doctor accused me of being a drug addict.  I left the office in tears.  This doctor clearly did not care about trying to get to know my health background and help me as I prepare for surgery.  I was terrified and caught totally off guard.  Thankfully, in this small community word got out about my horrendous experience and another doctor stepped up and met with me.  He is willing to work with me.  What a huge answer to prayer!

I ask for continued prayer for the Lord's healing, strength and peace.  I feel fragile and empty, so I greatly appreciate prayers that truly sustain me.  My other major prayer request would be for my husband, Jack.  He has a full time job as a minister in a new community AND is taking care of me.  It breaks my heart that I cannot take care of him and then I feel like a huge added weight.  Please pray for strength and comfort to surround him.

My struggles and challenges seem teeny tiny in comparison to the obstacles facing those affected by Hurricane Sandy.  My heart and prayers go out to those impacted.  I often feel guilty, because I easily become self-focused with my own pain and challenges.  I feel quite needy with very little to offer.  Many days I lack the energy to return phone calls or emails.  I do not have much, but what I have I give freely.  1) I keep a prayer list and pray many times throughout the day.  I am constantly aware of my dependence on the Lord for strength.  I am always honored to pray along side of you or even pray for something when you do not have the strength to pray for it yourself.  2) I will try and be as honest and open about my journey.  God deserves all the glory.  However my experience can be utilized to bless others I am all for.  

Thank you for your partnership in prayer and friendship.

Blessings,
Becky

October 3...3 months later...lots of twists

I wrote the below update on October 3rd and forgot to post-it.  One example of my foggy brain.  Whoops!

Dearest friends and family,

3 months ago today (on July 3rd) I shared with you my greatest news of the year...no pancreas surgery!  An unexpected series of events happened over the past 3 months that in some ways I am not as eager to share.  My heart and gut feel like they have been ripped out, yet simultaneously blessings have been showered on us.  I have been humbled and honored when I hear that people are still praying for Jack and me.  Prayers are greatly appreciated.

I always hope to be brief, but then I allow gaps of time, so I will do my best.  

While I had been in the hospital at Hopkins back in April a church in Beaufort, SC had contacted Jack about an opportunity to serve.  Jack's position at the church in Lancaster was temporary and part-time.  This was a true blessing allowing Jack the flexibility to be with me during different hospital stays and also allowing me to be near an established community of friends and family.

However, we had been praying for a full-time, permanent position, so I guess we shouldn't have been so surprised when Jack received a call.  

It was clear from the start that God was orchestrating this call - Jack cancelled the first interview, forgot about the second interview and had to cancel it (in Jack's defense I was having my PICC line put in when the SC church called) and the third time, Jack started by saying he wasn't interested in the position.  Jack was looking for an ordained, full-time position and the position they were offering was non-ordained.  A few weeks later the committee called Jack to inform him that the position had been approved to be ordained and asked if it would be okay to contact his references.  Side note: to change a position from non-ordained or ordained is no small feat.  At this point both Jack and I knew we needed to sit up and pay attention.

God made it possible that my PICC line fell out before we flew down to SC for the interview and I had just received the news from Hopkins of no surgery.  Timing seemed perfect to explore a new chapter in our lives.  The interview went well and we had a wonderful time seeing the area.  

We didn't have a lot of time to process the trip, because a few days later my sister's wedding festivities began. I was not only able to be present at the wedding, but ate, danced and celebrated.  Praise be to God for His timing and healing!

The next week I crashed physically and emotionally.  Jack and I needed to make our decision whether or not to accept the call at the church in South Carolina.  I felt torn in half.  I love Lancaster - it is where our home and community is.  On the other hand, I felt a strong pull from God that we were supposed to move to South Carolina.  After our decision was made to accept the position in South Carolina, I felt a wave of peace.  It felt like a million reasons why we shouldn't move, but I knew God would take care of them and the Lord has provided.

The day after our decision to accept the call in South Carolina, VBS kicked off.  After a full week of VBS, Jack preached at all 3 services on August 5th.  We got in the car the afternoon of the 5th and headed to South Carolina.  It felt like we were on a treadmill that was going faster and faster.  How was this all happening so fast?!  Jack was approved by the Committee on Ministry, we met many lovely members, and we signed a lease on  a house to rent for a year.  

Everything was falling into place until August 11th.  I woke up with horrible stomach and back pains...pancreatitis pain.  The pain was so bad that I violently threw up and later found out I dislocated a rib in the process.  Jack drove me to the ER in Beaufort where I was horrified.  It took 3 hours before I was given an IV.  Not only was the pain excruciating, but we had just committed to moving to this place with the belief that my health issues were resolved.  In addition, the next day we were to drive back to PA (a 12 hour drive).   My faith was being shaken...things were NOT going as I had planned!  

On our drive back to PA, we were in a car accident.  Thankfully, no one was hurt, it was the other driver's fault, and he had insurance.  My car was drivable, but determined by the insurance company as "totaled" because it cost too much to fix it compared to its value.  What was going on?!  It felt like my life was falling apart.

Fast forward to the blessings...within a few weeks we accepted an offer on our house (no small miracle in this economy), I was able to fly down to SC with my mom because I didn't have a car to drive down, Jack and my dad found a great deal on a new car for me that already has SC plates, and I have an appointment with a pancreas specialist on October 26th at the Medical University of South Carolina (MUSC) in Charleston.  MUSC is #2 in the nation for the pancreatectomy with islet cell transplantation surgery (second only to the University of Minnesota).  I was upset to leave Hopkins, but God provided an even better resource in my new community.  Incredible!!!  In addition, tomorrow I go to a Chinese born and trained acupuncturist whose office is only a few miles from my new home.

One would think with all of these miracles, my faith would be rock solid.  My hardest/biggest struggle is constant pain while living in a new community.  I had pictured being pain free and looking for a new job, not new doctors.  I am back on pain medication, which was not the direction I wanted to go.  However, I know it is a temporary solution.

Prayers of praise for God's provision and prayers of continued healing would be greatly appreciated.  Words of encouragement are always welcome.  As always, I would love to hear an update from you and/or how I can pray for you.

Blessings and love,
Becky