Saturday, June 27, 2009

is this the start

I have been in remission for so long now that I might have forgotten what a bad day might be. But today, today might be the start of coming out of remission and into those bad, very bad days.

I have had lots of cramping and been in and out of the bathroom all day today. I think that the stress is getting to me. I know that stress doesn't cause this disease but I do know that it can kick it up a notch. At least in my case stress really gets my UC's engine going.

So what's a girl to do? Easily said, "Not stress right" but NOT easily done. I think about this situation day and night. There are moments when it isn't in the forefront of my mind but it is always there. Lingering around in my thoughts.

Here are some of the things that I think about.

Could the pathology have been wrong?
Should I request another colonoscopy?
Will I find the right surgeon?
Will they operate in time before it turns into cancer?
Has it already turned into cancer?
When can we meet with an attorney to do the will?
Living will, power of attorney, DNR.
Letters. Letters to my children, to my husband, to my family and friends.
Finishing photo books and baby books.
Video, should I make videos?
Will my small intestine be long enough for the J pouch? (PRAY FOR THIS TO BE TRUE!!!)
Will they be able to do this laproscopically?
Will I wake to a permanent bag? (PRAY THIS WONT HAPPEN!)
Will the recovery take longer than 12 weeks after each surgery?
Will I need one, two or three surgeries?
Will my children be scared because mommy isn't around for over a week?
How will they react when they see me in the hospital?
Should they come to see me?
What will we tell them?
How long will it be until I can lift my children up?
Will I become depressed?
Will I become infertile? (PRAYING THIS NOT TO HAPPEN)
Will I lose my hair? Strange but I just read this can be a side effect to a major surgery.
Will my husband love me the same?
Will our marriage grow stronger due to the road we are on or will it start to shatter?
Sex? What will that be like after surgery?
Will I close my heart and mind to God because I am mad?
Will my faith become stronger?
Should I change plans for my daughter's first year of preschool?
Should I withdrawal the kids from fall activities?
Will my mom and I fight? (of course we will a little....we are mom/daughter.Grin)
Will my husband feel tremendous pressure that his heart will withdrawal from family life?
Should I exit personal activities like MOPS?
Will I feel shameful?
Will I be put on steroids?
What will I wear in the hospital?
Will I have to stay longer because of complications?
Will I have my own room?
Will a service dog come to see me? (I hope so, I love those dogs)
Will people pray for me/with me?
How do I tell people? Should I tell people? (OK so I am telling Bloggy world but that's different in a way, right?)
How do I not play with my children for weeks after surgeries?
How do I try to put on a happy face?
Will the pouch work?
How do I not let this consume my conversations with my husband?
How do I talk to him about my desires if things go wrong?
IF things go wrong what will happen to my little family?
How do I not go the "IF"?
How will he tell my children if the "IF" happens?
Will I lose weight due to surgery (OK, I'll be honest..I wouldn't mind this part)
Will I get an epidural?
What will I be able to eat?
Will my legs swell from the Potassium drip? And the doctors believe me when I tell them it is from that? Happens every one believes me. They stop the drip and boom....leg swelling goes down.
Will you be able to notice the appliance I will wear during hopefully only the first 12 weeks after the first surgery?
How will I sleep with that thing on?
Will it leak all the time?
Will I get a skin rash from it?
How do I look at myself in the mirror with it on?
Will I take pictures of it?
Will I celebrate when it is time for the "Take Down" Surgery?
How will I really be after this is all done?

So I could go on and on. Are you even still there? Did I lose you during that list of questions that race/linger in my head and on my heart?

I don't know, I just don't know. But if today wasn't the start of coming out of remission than that day will soon come with all of this. All of this stuff in my head and on my heart.


Wednesday, June 24, 2009


So today I went off to meet with Dr. B my OBGYN. It was a nice visit and I got some things answered that set my mind at ease.

1. That he has cared for mommies to be that either had a illeostomy or a j pouch.
2. He did let me know that a little "help" might be needed because the biggest issue when it came to the surgery and the fertility would be that the ovaries might be hugged a little tightly by some scar tissue. OK so he didn't use the word "hugged" but I thought it explained it best.
3. That he had used Dr. P (which is the first doctor that I met) personally for a surgery he had to have on his colon. This put me at ease because to be honest I wasn't so thrilled with Dr. P because there were no warm fuzzies but when Dr. B made a statement like "he's a lot like me" I reflected at that very moment and remembered that I didn't like my now beloved Dr. B the first time I met him. Funny, how this might all work out.
4. He told me that if I was using a hormonal birth control method at this time, to stop due to the complications it might have on a major surgery. Mainly the potential for blood clots.
5. That he was sorry that I had to go through such a thing but that I shouldn't give up hope for another child(ren) in our future.

This visit was wonderful. It was great to have this one on one time with a doctor who truly made me feel like he was my dad or a good friend. Someone who had my best interest at heart. Telling me what to ask and what to look for. Reminding me of things like how lucky I was to have had this colonoscopy and that the high grade dysplasia was found in time. To be thankful for the two beautiful babies I already had but not to lose site on what might keep me going during a really hard time. Meaning that if I have a dream to be a mommy again after this surgery that I should pray on it, will it out into the universe. What ever I "needed" to do to stay positive. He also reminded me that sometimes women aren't so lucky and are diagnosed well after the fact and aren't around to raise a new born baby because their cancer developed while they were pregnant and that the patient had no idea prior to conception. Oh can you imagine. Actually I can. My best friend dealt with something similar to that in her family. Oh how my heart breaks to think of a child/mom/family being pulled away from each other by cancer.

So now I go to bed thinking should I go visit Dr. H which is the third surgeon I have set up to interview....he is in the medical center. Or do I go with Dr. P because now I actually know someone that he treated. Besides the fact that he has a great medical schooling background and is advanced in his practice and skilled in his career. Or should I go with Dr. A who had great bed side manner and put me at ease. Oh the decisions that need to be made. I also have been given a clearance to go to MD. Anderson Cancer center, so should I go there and see. I really don't think the end result will change. It's just a selection of who will do the surgery. I am pretty sure my insurance company is going to wonder why I am going to so many doctors. Oh the bills that will come to my mail box. Yikes.

Well off to bed. I can now rest, I think my little anti anxiety medication is starting to kick in. Yes, I got a little "help" in that area as I was going a bit crazy with all of this. Hopefully once the surgeon is selected I will be less type A about this whole ordeal.

Night, night.

Tuesday, June 23, 2009


Tomorrow I will go visit Dr. B.
Dr. B delivered both of my babies. Tomorrow we will discuss fertility issues that my future surgery...the one that I have no choice but to have, may bring into my life.
I pray that after a full year of recovery we will be able to have another baby.
My desire to grow our family is strong. I know right now I should not focus on such an issue but I feel that I need to be aware of everything that I might face as I head into my journey. I understand that fertility issues may arise from the surgery but they may not. I just need to understand more and whether or not my current OB would be able to care for me if we should be so blessed in our future.

So tomorrow I hope that just another piece to this puzzle will be solved and that my heart and mind continues to be placed at ease.

stay well,

Thursday, June 18, 2009

talking it out

Tonight I spent some time on the phone with a man that is several weeks past his 12week of recovery from the "take down" or 2ND part of the two part surgery in my future. It was really nice to talk to someone "live" about this. The surgeon....Dr. A said he would find a patient to talk to me and he delivered. I still am so apprehensive about doing this surgery but I don't have a choice. That IS the toughest thing to wrap my mind around. I mean it's tough to know that your body is going to be taken apart and re worked when you are 1) feeling wonderful and 2) Don't have cancer. However #1 could be erased in a heart beat(I've seen that movie before) and #2 true I don't have cancer...yet that is. However, those cells are changing every day and with the grade that I have, they might/could change prior to surgery. Lord bless me that won't be the case.

Well this real person, Let's call him Mr.D. Was kind, blunt, funny and honest. He painted good pictures for me and I am thankful for "meeting" him over the phone. He gave me things to think about and set my mind at ease over items that I was really all wrapped up in. For example, I was really caught up in my mind about this evil little drug called prednisone (it's a steroid). I had read that some patients were placed on this after the surgery and having been on it and having some terrible side effects I was not feeling the love about having to revisit this drug. Thankfully he said he hadn't used it during his recovery and there was no mention of ever having too. Natalie (over on my blog roll) also let me know that she didn't use it either but a second voice on the subject really settled it for me.

So tonight, I think I can rest a little easier. I have become a little consumed with all of this. Which leaves me tossing and turning at night. Not a good thing when you have little ones to love on the next morning.


Tuesday, June 16, 2009

my mind is spinning

So I have tapped into some information from "Real People" on their road to and through surgery for Ulcerative Colitis with a complete removal. I can relate to them in knowing that I have at one point or another been as sick or quite close to it but the hard part is reeling in all the information once you have it. Another thing that is bothering me is that I have yet to find a patient's story that is presenting like me. No colitis symptoms for years just recent discovery of High Grade Dysplasia. I am left with only one option.....having the surgery. No medications to take. No alternative surgery. A decision is already made. I have no choice. That is really something that is bringing me down. I have no say in it. All my control is gone.

However, this evening my hubby left these words on the computer screen for me to find. It lifted me up and gave me some happy tears. Thanks honey bunny, I love you!

I love you ML
Stay positive!!!
We'll get you through this.

Monday, June 15, 2009


So we went to meet Dr. A today. I must say that I was a bit apprehensive when we got there. The office was small. So small that the waiting room was overflowing....well OK not out the door but only one chair was available. We chose to stand. Then two people came on on stretchers. I wanted to leave but we stayed. Later as I filled out paper work the office girl told me that he is a very popular doctor and this office was the smallest of the two. The old folks on stretchers via ambulance were from nursing homes. So I guess he is a little popular. Popular is fine and dandy but I want GREAT!

As I continued to fill out my paperwork the office girl....Hope is her name said to me, "oh, you're Ms. Guy" Apparently Dr. A earlier today had specifically asked if I had an appointment booked. Apparently him and Dr. H (my GI) had spoken again over the weekend and he wanted to make sure I was on the books. That made me feel kinda like a VIP.

So we get into a room and we talk a bit to Dr. A. So far so good. Good bedside manner. He was listening and I felt comfortable. Then the exam. Let's just say I have outstanding sphincter muscles.
Soon we were led into his office where we discussed surgery and what I was in for. I was feeling uneasy when I arrived but by now I was relaxed and warming up to Dr. A.
He encouraged me to talk to more doctors and told me he would even supply me with a patients name if I would like to actually talk to some one who has under gone the surgery that I face. Instant bonus points for Dr. A.
Did I mention that he has good bedside manner?

So what do I know after today's visit.

Surgery is going to happen.
When.....he suggests not going past three months out due to the high grade dysplasia.
With whom?....that is still the lingering question.
I will contact two more doctors probably ones in the loop/med center.
How am I feeling? better, just a bit better about what is most certainly my course of action for my health.

stay tuned and stay well.

Sunday, June 14, 2009

changing directions

So this blog was to be my journey to single digit jeans but now it is taking a dramatic turn.
I have posted twice on my other me in the clubhouse about some recent drama in my life. I feel like the further I travel down this road I have been led to I will need an alternate outlet. I want my other blog to be this happy place about my babies. This blog might get a little dark due to what I am going to be dealing with in my future. I am sure that I will update my clubhouse readers about what is happening but for now this will be the place with all the dirt.
So if you want to know about the drama please go here and then here. For more drama, stay tuned to this blog. All I ask is that you offer up some positive vibes if that is your thing or remember me in prayer if that is how you like to do it. I thank you in advance.