...And Finally....

Hey sweet friends.  I have not been very organized about who I am emailing, as its rather off the cuff.  I know I will miss someone and just please apologize to that person for me :)  I have included my first 2 emails below.

I will be having surgery next Monday May 4th.  The original issue that required waiting ended up being a non-issue, wonderful news.  I am currently on liquids only, so the sooner the better!  

They believe that what is going on is not necessarily my Crohns, which is also a huge praise.  For those who want to know, my past surgeries re-routed my stomach and gave me a new exit in my stomach.  That exit, of course, doesn’t have a “flap” so the acids in my intestines reflux back into my stomach and have essentially eroded my stomach.  When I say ulcers, the pictures aren’t pretty.  They are like 24+ ulcers that have merged together and perforated in multiple locations….the reasons I have had to have blood transfusions, the reasons I can’t eat, the reasons for so much pain, nausea, vomiting.  So when I tell you that they are going to remove a portion of my stomach, that is music to my ears! :)    TAKE IT!!  They are going to remove all the ulcerated/diseased areas, repair what they can and reconnect me.  These doctors are so confident that I will be a new person on the other side of this surgery, so I will share their confidence and excitement. {sorta}

My new GI said this surgeon is the only surgeon in Houston he would let touch my stomach.  {in his Turkish accent}  “Only doctor I let touch my sister.  If I had sister…” ;)  I will be in Methodist Hospital for about a week and home to recover for 6 weeks.  We are SO grateful for our army.  We have family lining up schedules to come help with the boys and the patient :)  We have amazing friends who have already offered to help us at home and with my business.  We are so blessed and so grateful.  I cannot wait for a few months down the line to report to you how wonderful I feel!

Thank you for your continued prayers.  I get messages all the time from friends of friends and some strangers that are praying for me.  People get my name of prayer lists.  That makes me cry all the time…tears of joy.  But, WOW!  Strangers who take the time to pray for me and for my family.  It’s a lot to put my overly-emotional head around.  We are so completely humbled by all of it.  There is nothing more overwhelming and appreciated all at the same time!  Please keep my boys in your prayers.  They know they want me to feel better, but they are already nervous about me leaving for a week to go to the hospital.  Oh, how that makes me so sad.  God please cover and protect my family in my absence! ;)  XOXO

...And Again....

After last weeks scope, I had to go back in yesterday for another since they couldn't see much of my stomach for all the food that was retained there.  Here is my note to my friends yesterday with the update:

Hey hey!  Here I am! :)  Again…so sweet are the texts and messages.  I know it seems so silly, but each one seriously lifted my spirits today.  Today, I had John with me.  I was working harder to keep him sane than he was me.  As I told the nurse after his 20th question in 5 minutes….”This is why I brought my Mom last time! :)”  He had his notebook and pen and did a good job of taking notes for us.  We are a team!

So….phew.  Where to start.

1-The ulcers they found in my stomach are pretty ugly and deep….one they believe to be perforated or perforating.  That isn’t news to me.  What he originally thought was that those were NOT Crohns ulcers, but they are.  From the biopsies of the ulcers, they found that I have CMV…cytomegalovirus.  This is a common virus that is all over the place, but not everyone gets it except for those lucky enough to have an immune compromised body like me. 

2-Because of my surgeries, I have two exits to my stomach.  Both are ulcerated and both are obstructed by inflammation.  Surgery is imminent. :(  

3-However…before I can have surgery, I absolutely HAVE to get rid of the CMV and he really wants the ulcers to be healed or healing.  I can respect that as he wants my body in the best possible shape for surgery.  He does feel that the increased pain and issues I have had since the Fall are related to the CMV and is hopeful that I will have a great deal of relief when we treat it.

4-Plan:  See an infectious disease doctor to get the CMV taken care of.  Manage the ulcers with a new medication and get my body ready for surgery.  

5-If I can handle it, I am hoping to be healed and strong by the end of the summer for surgery.

Spiritual matters.  There is no way to separate my faith from my experiences here.  As you know, we have been so moved to tears, joy, peace, laughter, and more tears over my failing body.  It has certainly been an emotional roller coaster for both of us over the years.  I have been to 5 GI doctors alone in my years of illness and there has been one consistent message we have received from every single one.  My first doctor in Tulsa called me an NCS.  The name he gives his patients that are “Non-Complaining Souls.”  The doctor at Mayo Clinic told me if I was on the Oregon Trail, he would put his money on me making it to Oregon. When I didn’t understand he said that most people in my “condition” are in a wheelchair.  Today, my doctor looked at John and told him in his Turkish accent, “She is STRONG woman!  Most of my patients that look like her are completely debilitated. She has strong will.”  (as if he didn’t already know my strong will ;))

I say this not to give myself kudos..at all.  Because I don’t feel strong at all.  In fact, I feel pretty broken internally most days.  I say this to tell you and all the friends of friends and perfect strangers from all the prayer lists in my hometown and here that you have put me on, that those prayers are COMPLETELY sustaining me.  I am not tough.  I am not strong. Sure there are days that are harder than others, but I get to be a mom to 3 hooligans and I get to play tennis twice a week, I run my own business.  I GET to live a pretty amazing life free of a wheelchair and not from a bed.  (I cannot fathom!!) There is no way I have the power and the strength to do that on my own.  There is absolutely no way I could will myself to be OK despite my internal health.  The ONLY possible answer is that your prayers are heard and being heard and please don’t stop!  We are So.Grateful.  I am SO.Grateful. for this life I have.

My surgery is going to be really complicated.  It’s not going to be easy for any of us.  I am officially scared.  But I KNOW without a doubt that I am fully covered in prayer, thanks to you, and I could not ask for anything more.

As I left the doctor he said, “This is complicated.  You are complicated.  But don’t you worry because we “do" complicated here.  We can fix complicated.  It is just going to take time.”  Praise. The. Lord.

“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.  II Corinthians 12:9-10

Here We Go Again

I have gotten progressively worse since I had the pneumonia in the Fall and have finally been referred to a new GI doctor in Houston.  This is the note to my sweet praying friends after my first scope with him last week.

Hi friends!  I am alive! :)  Thank you, Thank you for all the sweet texts, phone calls, messages…all of it.  I got every one of them and loved all of them.  It was a crazy day, but I know a few of you like the medical details.  I am still piecing together things I heard while still coming out of sedation and what my mom has told me.  There was bittersweet information we gained yesterday, but first and foremost several praises.

1- I am certain my angel (Kara!!) was with me in the room.  When I got back, I only mentioned under my breath that I might be an aspiration risk.  They all stopped everything they were doing and brought in my doctor.  We discussed for a few minutes that I had food all the way to my esophagus.  Then, they noticed I was sitting up (laying flat is brutal for me). When the anesthesiologist asked if I had back pain, I said no that it was uncomfortable because I might vomit.  He said….”Intubate!”  After the procedure they said more than a few times how grateful they were that I warned them.  By being intubated, it protected my lungs from aspirating that food.  I did throw up while sedated and it would have been a disaster with so many more complications had I not been intubated and thrown up. Praise!

2-Once in, they spent the majority of the 3 hours cleaning out my tummy.  They removed 1.2 liters of food and more when they extubated me. And I hadn’t eaten in a day!  They did determine that my strictures are not the issue as we thought.  Which, in my mind, is SO wonderful to know that its possible that it is NOT my Crohns that is acting up.  HUGE! to know/hope that my Crohns is not progressing.  PRAISE!

3-The issue, they think, is an emptying issue that is secondary to my surgeries 15 years ago.  They aren’t exactly sure, thus my going BACK in for another procedure on Wednesday.  It is possible that after stomach surgery (even numbers of years later)  that the stomach will just stop pushing the food thru. In my previous surgeries, they cut my Vagus Nerve intentionally because it is responsible for secreting acid.  BUT…it is also responsible for peristalsis….or pushing food thru the stomach. Doctor friends….you probably know those terms better than me!

Waiting on test results, biopsies, lab results.

John and I are both so humbled, grateful, and overwhelmed with the love of our friends.  We are tired…very tired of fighting for health and normalcy.  We know that it seems endless and feel like we are wearing our precious friends out with our prayers and struggles.  It takes having absolutely nothing left in our human strength to know the power of our God, to know the power of prayer and to know the incredible God-given beauty of true friendships.  The kind of friends who love you thru the difficult times and amazingly, just keep loving you when the struggles don’t stop.  We love each of you so much and appreciate every. single. word, prayer, note, and thought.  To be prayed for and to FEEL that prayer, to FEEL the Holy Spirit take over….that is a feeling I wish everyone can experience and a feeling I can’t possibly put into words.  It has been a struggle for me, but I have not experienced any pain as great as the POWER of fullness, joy, peace…(i truly can’t describe what I feel) when I know prayers are coming to me in a specific moment.  We have learned and grown so much thru this “nightmare” in our marriage and in our faith.  God is good.  ALL the time!  He turns lemons into lemonade!

John, who many of you know worries at an OCD level of worry, was in tears yesterday on our way to the hospital.  He said, “I don’t want people to have to help us.  I just want to be able to help other people the way everyone is helping us.”   We are eternally grateful and love each of you so so so much.  

xoxo