Thursday, May 31, 2012

So far in Houston....

I'm sorry I haven't been able to post here yet since we arrived.  Our son woke up needing to go to the doctor the morning we were to leave so of course we got out of town much later than we thought.  This put us arriving in Houston at 11 pm and yet somehow our landlord was still readily available to "drive by" and get us situated.  (Yay, for blessing #1) After we followed someone in through the security gate of our new apartment and proceeded to park next to her on the 2nd level of the parking garage it donned on us that we were probably scaring her to death.  Billy wanted me to get out, go up to her car and tell her we weren't really following her and she was safe.  However, I saw she was pretending to be on the phone and wouldn't look at us and decided it was better than I get out and get my pillow showing her we belonged there.  Poor girl, I think we scared her to death because she never got out until we were down to the 1st level.  It was then we saw her back up and resituate her car in the parking spot..  I'm sorry, whomever you were.

Our new landlord, Ty, got us settled in our new home.  Here is a cozy little shot of our entryway.  We finally got to sleep around 1:00 am.

We had to be up to make a 7:00 am appointment the next morning so we began Day 1 with a very short night of sleep.  Words are hard to come by to explain the day, but here are a few glimpses for you.

Here I am putting on my "early morning" brave face before meeting with the anesthesiologist.  We learned a lot in this appointment as he took an full hour explaining the entire process from his perspective.  I found this all to be so helpful.  (Blessing #2) One of the main things he said is that they may keep me under anesthetic or at least sedation with a breathing tube for the first day or so after surgery. This will be for my own good to give my body more healing time before I have to wake up, and also to make sure I don't start messing with any of their handiwork without thinking about it (due to the pain meds and residual sedation in my body).

We left the anesthesiology appointment at 9:30, which meant we'd already missed 2 other appointments on our schedule. But we moved on to meet my gynecological oncologist (gyn-onc).  We'll call him Dr L to keep things simple.  Here I am in the waiting room before his appointment.
Our appointment with Dr L required a lot of up front reading about the procedure and the aftermath.  I joked with him when he walked in and found me laying back on the bed that I was just doing a little "light" reading.  He laughed and asked to see what I was reading.  I handed him the packet the nurse had given me earlier and he disagreed with the statement "light" as he brushed his fingers through his hair and sighed.  I smiled like everything was fine, but he knew better.  He said, I see you are smiling, but I know you don't feel like it.  I almost crumbled, but decided to smile bigger as I told him I always smile!  He said he's much the same way, and over the last 36 hours I have seen that he is.  Billy and I have felt very comfortable with him and his wonderful staff.  They have had to put us through some very difficult discussions and exams and yet they have been thoughtful and gentle.  (Blessing #3)

One thing to point out from this meeting is that I will most likely be in ICU for at least 24 hours after surgery so they can keep a very close eye on me.  I will be allowed visitors some, but noone can stay with me at night.  Once I am in a regular hospital room they encourage people to spend the night with me to watch for anything abnormal or concerning.  I will not be able to eat or drink for the first week.  All nourishment will be handling through the IV.  There will be a tube draining my stomach so that all the work they've done in the intestines will have time to heal.  Once I begin eating it will be very gentle foods like jello and broth. I will also have a drain tube for my reconstructive surgery 5-7 days.  My husband is so encouraging through all of these appointments and never leaves my side.  I just adore him.

After meeting with Dr L's team (including another gyn-onc that will help with the surgery, who we'll call Dr C) we moved down to get blood work, urine samples, an EKG and chest x-rays.  All this showed that I am healthy enough for the surgery.  While getting ready for the chest x-ray I looked at myself in the mirror and saw how ridiculous I looked with my shoes and hospital gown.  I thought I'd capture it for a laugh so here you go!

I was getting so tired at this point.  My head was spinning with everything I'd learned.  I really just wanted to go home and put my head under a pillow, but we still had more to do. I'd missed another appointment because Dr L kept us so long.  It was 2:15 and we were getting very tired emotionally and physically.
However, we rushed to the PET scan appointment for our 2:30 check in and they had a lobby full of at least 60 people.  We finally found a seat where we could put our feet up and I thought to myself this looks so much better.  Like things are right in the world even.  (Blessing #4 - I still had a small sense of humor)

They were so far behind that my I didn't get called back for over an hour after my appointment.  It gave us a little time to just sit and process all that we had learned and been through already.  It was a lot for me, but also for my sweet husband.  The Doctors have been very supportive of him as well asking if he's okay and if he has support coming for the surgery, etc.  I'm so thankful that his family and mine will be coming. 

By the time the PET was over I walked out to a mostly empty lobby at 6:00 PM. We had been at the clinic for 11 hours and due to the scan I had not been able to eat for 9 hours.  Honestly, I just felt miserable.  I'm not sure if I am just tense all day listening to these doctors, but I've ended both days with a horrible headache and I cannot take anything for it because of the upcoming surgery.    
Day 2 included lots of make up appointments we'd missed Day 1.  We met with a psychologist, with a research project specialist  (which enlisted me for a 10 year research program) a Wound Ostomy Nurse who marked where my ostomies will go, and Dr L to go over my surgery forms in details with all the risks and the one sole benifit.....Life!  I signed consent and Billy signed as the witness.  It was a heavy hearted day.

Thank you all for praying and encouraging.  I may not always get time to reply, but I am trying to keep up with the posts and texts and emails.  You all are amazing me with the amount of support you have shown.  Thank you so much for loving us through this next journey.  (Blessing #5)

And although I don't have the words for Day 2 yet there is one part I do want to share.  
My PET scan came back showing clear.  This seems confusing, but this is a very good thing because they see no reason to abort the surgery at this point.  They can proceed based on what they have felt, seen and biopsied.  (Blessing #6)

Sunday, May 27, 2012

Sweetly Broken, Wholly Surrendered

If you've been following along you know that I began sharing about my cancer journey in November 2010 when I was originally diagnosed with he very rare Primary Vaginal Adenocarcinoma. With a huge amount of help from my doctors, my family, friends and even strangers I successfully navigated my way through multiple surgeries, chemo, external beam radiation and internal radiation (Interstitial Brachy Therapy). I gratefully completed this journey in late March 2011 and I was fairly certain this was the hardest path I would ever travel.  In the same way that a hiker stops at the top of the mountain and looks back reflecting over what they just experienced, I too reflected over my experience and wished I had trained harder (memorized more Bible verses), trained longer (had my kids raised before diagnosis) and trained more often (prayed more often, read my bible daily, told people I appreciate them more). My lack of training for this particular trail didn't impact me, because my tour guide held my right hand tightly up and down the trails.  "You will hear your Teacher's voice behind you.  You will hear it whether you turn to the right or the left.  It will say, 'Here is the path I want you to take, walk in it." Is. 30:21  Oh how I've been thankful for my Teacher's voice, for there is no better trail guide than Jesus!

Recovery from this journey took longer than I expected; and honestly I am still recovering in ways unseen. However, after a couple set backs (my abnormal pap and surgical biopsies/scrapes) I finally hung up my "finisher" medal and shared my celebratory pics in December on Facebook and in Christmas cards. I finally felt it.....believed it even......I was a cancer survivor. I willingly became part of this accomplished, amazingly strong group of people. A mighty success; a sad addition to my resume.

Early 2012 I began to feel more alive, more myself, much stronger; so you can imagine the shock when I learned early March that I had another abnormal pap. Just like last November it was an A-typical glandular cell which meant I had to go under anesthetic and have multiple biopsies and scrapes once again. My Gyn-Onc said her antennas were up, but she could not imagine it would turn out to be cancer already. Sadly, the during the out-patient surgery my doctor could feel a hard growth higher in the vaginal wall and the biopsies came back malignant.  We were stunned, knocked off our feet, even paralyzed by this news. I couldn't help but ask God "WHY"? 

Now two months later there are many signs that God is at work once again in my life, even in the midst of more bad news.  Sometime soon I'll share the story of how we've gotten to our decision point, or even better, the proof that God is alive and real in the midst of suffering.  For now, please pray over the next step in our journey with us. 

Billy & I will be living in Houston, TX for the next month to pursue my "cure"!  This was a long and hard decision and the journey getting here has felt steep.  I've settled into the fact that there is a rugged and difficult hike ahead. I'm planning to proceed with the one and only option I've been given....a Total Pelvic Exoneration.  The OU Cancer Institute only performs this surgery twice/year on average whereas MD Anderson performs it 12/year. My surgery will not be common, but my hope for a cure is felt by all cancer patients alike.  Today's suffering is worth it, as our hope is a long lifetime of precious mundane moments

Join me in prayer over upcoming appointment days, great sleeps/steady hands/compassion for surgeons, nurses, anesthesiologists, counselors, family and friends.
*Wednesday, 5/30 - Meet with 3 surgeons, 2 counselors, blood work, physical exam, PET scan, CT scan
*Tuesday, 6/05 - All Day Surgery

This morning we studied Jonah in community church and we learned 4 good lessons from his story.  I told the pastor afterwards I thought he was speaking directly to my row of weeping people. 

Lesson #1 : God's will is not always the same as my will!  (His is bigger and better.  His will is not to make sure we are happy, but it is to make sure we are more like Him. -  Jonah 1 & Romans 8:28-29a)
Lesson #2 : Being out of God's will is a dangerous place to be! (God will do what he must to bring you back to Him and His plan will prevail. Jonah 1:15-17) There will be thanksgiving when you are in His will.  Jonah 2:9
Lesson #3 : When God steps in and interrupts your life He IS thinking about you! (When God's plan is fulfilled he will step in and help you. Jonah 4:10)
Lesson #4 : Be careful - Learn from God's interruptions.  (We cannot only have faith and love God when life is good.  Jonah 4)

Jonah's journey shows us that God is in control and he cares about every single step we take and all people we meet along the trail.  I pray that as I put one foot in front of the other I will listen for my Teacher's voice helping me to be faithful and transparent so that those I encounter will see God's will in action. 

In the words of a song from church this morning.....may I be sweetly broken; wholly surrendered.