Help for someone else having this surgery....

Hi.  This post is specially written for the person that posted they wanted to talk to me about having a Total Pelvic Exenteration surgery. I cannot find where you wrote your comment or how to get in touch with you. I would love to help answer any and all of your questions!  I had SO MANY before my surgery and nobody to talk to. 

Please reach out again.  You can email me privately at gowrights@hotmail.com

God bless you.

Kristi

This is a picture today of Kristi and her friends Jodi and Kara. They have all three had similar Cancer journeys, surgeries, etc. Great support system they have formed! AND this is DR. Levenback with them!! I feel like he's my real life Hero! He helped save my sisters life. His decision making and enormous amount of knowledge and skills have brought her to the other side of this medically. I couldn't ever thank him enough! And I know he truly cares about my Sister as well and that means a lot to her and the rest of us. It never feels good to just be a number and he definitely doesn't treat her like that! 
Thank you Dr. L!!! I think you ROCK! --Katy

Headed Home!

Kristi and our Parents are on their way home from Houston. It will take a few days. I can't say how relieved I am to know that they are coming home. I was hoping that she would stay there for a week after surgery but definitely ready to see all three of them. The emotional side of this trip took me by surprise. I knew that I hated for her to go and endure all of that again but the fear/sadness that crept back in I actually had to focus on shutting that down. I flew into Houston for a trip to CA in September and I started crying as we landed, unexpectedly of course! I think that there is so much wrapped up into Houston/MD Anderson and the emotions that go with it that it will always be a hard place for my family. I was nervous for Mom, Dad and Billy to return there with her because I cried just landing there! There will always be this love/hate relationship because on one hand Houston represents sadness, fear, grief, tests and surgeries, disappointments, survival....I could go on and on. But on the other hand it represents LIFE! It represents a chance at life and surviving Cancer and also has great doctors and a wonderful hospital that took such good care of her. And continues to do so! We walked away from there and all the hardship that went along with it WITH our loved one!! We took her home! Not everyone gets to leave that place with the one they love and that was VERY apparent visiting there. Thankful for the outcome of this surgery and that she may have pain free days (hopefully several in a row or maybe not any...!) and grateful that she is feeling better than a few days ago. To God be the Glory.

They are about 4 hours from home tonight and just stopped at a Hotel.  Kristi slept on the drive and said she has been having a little upper abdominal pain but improving. That her energy is still low and cannot wait to get home! Mom told me that she has had little outings but gets worn out easily and needs to rest or nap. It's important for her to walk as well. Thank you for your continued support and prayer, Katy.

Finally got to leave the hospital late this afternoon!  Our exit was celebrated with long time  family friends, Kim & Nancy Cook.  They are here for Nancy's treatment.  We ask that you join us in praying for God to heal Nancy fully and make her brand new again.  We know that God is always faithful to his children. 
Billy, mom, dad and I are all settled back at our hotel and everything is going well so far.  I have great "nurses"! We even had Papa's BBQ for dinner and I am sure it was the best I've had!  Perhaps compared to days of hospital food, but I will stand by my recommendation regardless!  :)

Billy is here with us until tomorrow afternoon.  He is flying into Tulsa if the weather doesn't impact his travel.  Pray that it does not!

Mom and Dad will stay here with me until I see my plastic surgeon on Tuesday to learn when we can come home.

My meds are kicking in, so I must close my eyes.....

Goodnight.

1 Day post op update

Good morning everyone! Thank you so much for praying us all through yesterday! What a long day. Surgery was much later than anticipated. I'm not sure if it was the lack of food or laying on a hard pre-op gurney-like bed for hours, but I ...got the biggest headache. It even hurt in my entire face and I just wanted to go to sleep. The anesthesiologist mixed me a 3 part potion and it made it go away finally. I think it made me go to sleep too bc I don't remember much after that. I was so thankful! Surgery is thought to be a big success. There was a lot of scar tissue and granulations tissue that they cleaned up. Where they had put what they call "flaps" from my leg muscles up into the pelvis the skin had not stayed healthy and lost at least one layer if not all. This allowed the two "flaps" to grow together with scar tissue. That tension and pain inside of me will now be gone once recovered. The granulation tissue on the outside is all gone and will heal as well. Funny thing is that they recoated those "flap" muscles with fetal cow collagen. It is stripped of cell, bacteria, blood vessels, nerves, etc and send in a hard form, but sterile. They add moisture back to it and sew it to me as needed, then my cells and nerves, etc will grow into it and make it part of me. Modern medicine is amazing! The Dr said a small piece of this calf collagen can cost up to $10,000! So I am thanking Jesus for my insurance right now too! As you can imagine these medical procedures of 2013 have done us in financially! Even with all the EXTREME generosity of everyone through the church, wepay account and directly. I want to say thank you for that once more bc I just can't say how much it has helped us this year! I have been so blessed and humbled that we know so many generous and many anonymous people willing to help this way! We will pay this forward as soon as we can, and however we can!

Anyway, we had thought I'd get to go back to the hotel last night, but because they did more extensive work revising the reconstruction (flaps) and they inserted a stint to keep this from scarring together again, I have been put on bed rest and submitted to the hospital once again. The stint is painful and uncomfortable, but where they stitched the collagen is painful as well right now. They are doing the best they can to keep pain at bay while I'm stuck laying here for now. The nurses here are awesome! I got to see 4 that I know from before so far and they have gone out of their way to come see me. Such an amazing bunch of women that I thank God for as well.

Mom, Dad & Billy went to the hotel last night for a better nights sleep and will head back to see me soon. I'm so grateful to my parents who care for me as if I am still a toddler. They are fully devoted to my well-being and comfort. I'm thrilled that my husband got to come and be here to finish this process with me. I can hold his hand and feel safe and loved.

I love that my kids are having snow days with their cousins right now. That means they are so happy and the time will go by so fast for them.

God is good, all the time!

Oh, P.S. ~ Dad did ask the doctor what breed of cow the collagen comes from. They don't know, but I'm pretty sure it is a very high end breed! As you can imagine we got the doctors laughing with this line of questioning!See More

Surgery Day

Good morning friends!  Mom, Dad & I are in Houston once again.  We've had two days of pre-op appointments, CT scans and bloodwork.  I even got to spend a few hours with new survivor friends.  What an encouragement it is to see these ladies years out from their surgery and living life well!

 

We are currently waiting to be called back to the operating rooms. We checked in at 10:00, but surgery isn't until around 12:30.  I'm hungry!

 

Today's surgery will be a bit "exploratory" as they will not know everything they will need to do until they've done an exam.  It is believed to be an out-patient surgery so I will get to go back to the hotel to recover.

I came down here with dread, but am feeling very hopeful that they can get rid of the ongoing pain I've had.  I'm actually a bit excited about that part!

Another Surgery in December

Friends, I have one more surgery...which I'm praying is the last.

The surgery is a follow up to my post on July 17 regarding pathology results. Here is a paragraph from that post in case you missed it.

"In my last update I mentioned that Dr. L sent off some skin/tissue samples to pathology and they did come back as he expected.  I have some skin not healing correctly and I believe he referred to it as granulation tissue. My plastic surgeon described this as skin that is trying to heal, but instead produces little clusters of blood vessels.  These blood vessels are very tender and bleed easily, plus they have a lot of nerves going to them causing pain and discomfort. He believes one of his incisions didn't heal well because of excessive swelling in the months following surgery.  He and Dr L. will discuss timing and procedures and then will want me to come back down for an outpatient surgery.  Obviously, going back to the operating table under anesthetic is the last thing I want to do right now, but they believe they can relieve some ongoing pain I'm having if I allow them to remove this granulation tissue and any scar tissue they find during the procedure."

Well, my plastic surgeon and gyn-oncologist both wanted me to come back right away, but I have not mentally been ready to go back to the operating table.  I've been told that Post Traumatic Stress is a real thing in cases like mine and I believe it.  I have anxiety over medical things I've never worried about before at all (like I.V.'s and CT barium drinks)!  Actually I get anxiety in general sometimes and I've never dealt with that.  I don't like it!

Oops, I'm spiderwebbing today.  So....back to the subject (which I'm trying to avoid).

I will leave for Houston on December 3rd and my parents will meet me there.  I'm hoping to find a decent flight later today.  That afternoon they will do blood work and 2 CT scans; one of my lower abdomen and one of my chest.  Without making any of you too uncomfortable (I hope) I will explain the three things they will be looking for;  1) Signs of cancer 2) Where all my organs, etc have settled since surgery  3) If there is any opening behind the scar tissue that they currently see (and plan to remove) in the vaginal reconstruction area. Obviously, we want # 1 to be negative and #3 to be positive.  If #3 is positive it will make this follow-up surgery less intensive.  Please pray for these things.

On December 4th, I will have pre-op appointments with the Doctors and hospital techs.  On December 5th, I will have the surgery and examination under anesthetic.  I do have to decide if I will use a skin graph or a mesh to coat the area where the skin has to be removed to reheal properly. I'm very tired of being cut on, so the skin graph from my outer thing sounds terrible.  I'm also not a proponent of putting something man-made in the body. Please pray for this decision to be clear and from God.

I am going to look for my husband, Billy, plane tickets to come down the night before surgery and stay through Sunday.  We are looking for a 2 bedroom hotel suite or small apartment we can rent for 1 week. Danina has a speaking engagement a couple hours away, so may come up for the surgery as well.  I'm hopeful that the doctor will call me today and let me know how long they think we need to stay there.  We are kind of guessing at this point.  They believe I would have the surgery as an out-patient and just stay close by for about a week until I can have a post-op appointment to release me.  I'm not sure if I will fly or drive home.  This may depend on how well I am recovering and able to sit after the surgery. 

Going to Houston always brings about a hundred questions.  Some will not get answered until we are right there in the moment unfortunately.  They are so very busy there, but do great at taking care of who is in front of them that day!

Please pray for all the details of this trip and everyone involved. 

Thank you prayer warriors.  You are faithful encouragers and I know we couldn't have made it this far without you!  When I am too weak to pray, I know that you all are!  Thank you!