areas of concern

So I called in and talked to the nurse. She said "Mrs. Guy, the PET scan revealed some areas of concern and Dr. B would like to see you next week to discuss." I asked her where the areas of concern were. She said in the area I had surgery and else where. That the doctor would tell me more. My heart beating loudly and tears running down my face I ask if there is any way I could meet with her today!!!! There is no way I can go the weekend w/o knowing more. She checks the schedule and says "is 11:15 this morning a good time?" My reply "Yes. 11:15 will be fine."

If possible could you please lift me up in good thoughts and prayers at 11:15.

ML

Running on Scared

I have been feeling pretty confident lately.
I think today I was knocked down a peg.
I missed a call today from the oncologist office. The nurse had asked me to call. When I got the message it was after five. Just 10 after so I quickly dialed....hoping someone was there. Well there was but not a nurse to be found. I was told to call back in the morning at 830am. So now I ponder. I worry. I stew. I feel sick. I anger. I cry. I swell with fear.

What I do know is I can not control what I am told tomorrow. It is done. I don't know what I will hear, only God knows. I pray that it is good news. However, the doctor did say that she doesn't call with good news. BUT she didn't call. A nurse called. I pray that a nurse wouldn't be given the job of telling someone that the test results came back with indication of cancer. I pray that I am cancer free. I just don't know if I could handle more than what I have going at now.

Life is stressful enough, add a illness that downs a spouse, mix in a mother in law living with us (praises for her!) and then a dash of toddler tantrums. Blend in news that you don't get until the next morning because you missed a call. Let it heat overnight and boom you get someone running scared!!!!

So as I try to remember that I am in God's hand, that he will comfort me, protect me, carry me. I also fall prey to the evil one who tampers with my thoughts and emotions. I need to be strong but I feel so fragile. I have not felt this emotional since prior to my surgery. I don't like the feeling, I can not shake it. I pray that it will go away, that my fears will be smoothed away.

God, grant me peace and health. Amen.

ML

PET scan

I will be checking in tomorrow at 7am for the PET scan. It is close to my house so Lance will drop me off as I will be taking a little white pill that will make me a cool as a cat and as calm as a clam. Then two hours later I will be picked up. Several hours later we will drive down to the medical center for my appointment with Dr. "soft touch" as Dr. H calls him. Will have to keep you posted on that.

So wish me luck and pray for a clean and clear PET scan.

Goodnight,
ML

There is some news....

But you'll have to come back later to learn what it is!!!!
I'll be posting after bed time.
ML


UPDATED.

Hello, I am back. Babies in bed. Some shopping is done and my bottom is recovering from the torture it received yesterday. Man on man! I know the dilation is a part of the recovery process. It is so important for the doctor to make sure I am healing well internally but let me tell you. To say it is a pain in the ass is an understatement!!!!!!!!!!!!

So let's see what I learned yesterday. My internal j pouch is healing "beautifully." In fact it is healing like a champ. It is ahead of schedule!!! What does that mean? Well, Dr. H said
if it is healing like it is now or better come the fourth of January we will set a "take down" surgery date. It is also a huge possibility that we may get to do it by the end of January. A whole two weeks early. OK. So two weeks may not be seen as "early" but to me that is a huge PLUS!!!!

I have to go back for the wonderful dilation process and pouch check next week where Dr. H will not be present due to vacation but he joked that I will be dealing with a more "sensitive" doctor on Monday. Dr. M apparently has the "soft touch." Ha, Ha! I guess I'll have to let you know if that is true.

So next good news is this. Blood work came in today from the oncologist and it was 100% normal and no reason to have caution. My PET scan is set for Monday morning. So at 730am I will be prepped for being placed in a tube and then at 330 I will be bracing myself for a tube being placed in my....well I am sure you know where.

I am praying that my PET scan shows no concerns not only in my cuff but also else where in my body. Wouldn't it be amazing to say I got an A+ at my PET scan? I mean to pass with no cancer findings any where in your body, wow that will be huge. I pray that happens.

Next best news is this. I changed my appliance ALL BY MYSELF on Monday. No nurse was present in my house. I was so scared. But I did it. I did it bright and early, took a shower w/o it on and let me tell you that what a freedom that was. Let my skin dry and placed the appliance on step by step and it worked. No leaks! AMAZING. My nurse comes on Thursday so we will see if I in fact did it right.

SO all is good here. My mind is easing and I am praying that God continues to see me through.

Keep praying and sending well wishes because I know they are working.

Thank you, Thank you and Goodnight!
ML

One month, eight weeks, 1 day

One month since my surgery! Feeling much better than even last week. Each day gets a little better. Some days are hard but it is getting better. I know I will get through each day. One at a time is all I can strive for but its working.

Now here I sit. I have completed four of the 12 weeks recovering time. That means what? That means that in eight (8) weeks I can have my take down as long as there are no complications.
I pray for no complications!

It's been one day since I saw the oncologist and I am in such a better place than I was just two days ago. Praises!

So there you have it folks my Tuesday count down.

My cuff is cancer free!

ML

PRAISES!!!!!!!!!!!!!!!!!!

So I have great news. The doctor, the oncologist, that I saw today explained to me today that I probably no longer have cancer!!!! I really liked the doctor. Let's call her Dr. B.

Doctor B did confirm that I did in fact have Stage 1 cancer but that the 1.5 cm tumor was gone because of the removal. She feels certain that my cuff is not affected due to where the tumor was located. She also told me that my cancer was deemed "aggressive" but since it was gone I shouldn't worry.

Doctor B continued to tell me that she didn't see any reason why my second surgery shouldn't stay on course. So as of tomorrow, Tuesday, I will be 8 weeks out from the take down!!!

I did have blood work done and a PET scan will be ordered. This will give us more information. Doctor B mentioned that based on my CAT scan at the hospital she felt the above mentioned tests would prove no cancer. You see the CAT scan didn't indicate any issues and it, the cancer would have been noticed.

This is all very exciting and such a blessing!!!! I am going to go for a second opinion. Doctor B encouraged me too. But she did mention that the pathology findings were very clear and that I would probably hear the same thing but that it was the responsible thing to do...get a second opinion that is. My friend, Susan concurs. Susan drove me to the appointment and sat in on the talk with Doctor B.

I have to say to Susan....Thank you. Thank you for arranging your day so you could go with me. I am glad I accepted your offer even though it was good news. Susan was my nurse during my original colonoscopy. So she knows the scope of emotions I have been dealing with and the medical facts. Thanks again Susan.

So I close with this. Thank you for your prayers and please keep them coming. I am not out of the woods yet. I feel much relief and know God was present today. I know he is going to heal me and see me through. Even in my darkest hours, he is there. I may reject the notion that He is because of my own sinful fears but yet He stands firmly next to me, embracing me always.


My cuff is cancer free is my new motto. I will say it, pray for it and believe it!!! I will not be told otherwise. God will heal me!
Praises, praises and praises!!!!

ML

blockage, supply company disaster and other tidbits

The trial and tribulations of my life right now seem to be all centered around my health. But I rather it be me in poor health than one of my children. Oh, I just cant even think of how much harder it would be to dealing with a child that is ill right at this very moment.

Let's see. Where to begin. How about with I think I may have a blockage in my small intestine. Pretty straight forward right? No beating around the bush here. I don't know for sure what it would feel like to have a blocked intestine but I am thinking it might hurt just a little. So as I analyze my pain I will in fact call the on call doctor if I don't feel well soon. I just really ache all over and my stomach seems hard and distended. I have been drinking plenty of water and I haven't eaten much of anything. So not sure why I feel this way. I am defiantly having to empty my "bag" so I suppose it might not be blocked but it is all liquid. I know, I know gross but refer to the disclaimer....it might get gross here at Thirtysomething. Lately I have been dealing with more of a sauce like out put but today all liquid. Liquid and pain....hmmm, not sure what the deal is.

Oh on to the next topic. Maybe my mind will wander from the discomfort and pain. So in the beginning of the month and the first visit from my nurse we went over the supplies I would need to order. She circled the items and marked the pages so there would be no question as to what I needed. She calls me the next day with the number of the company that my insurance coverage is valid with. I dial the company. Let's call them Sterling...oh yeah because that's the name of the company. I place the order. I give the man on the other end all my information and the items I needed. He tells me that once they verify my insurance and my diagnosis from the doctor's office they will ship the items. So far so good. He tells me this could take up to a week. I don't sweat it because although low on supplies I had enough. Enough to get by. Then a week goes by and I call to verify because I haven't received an email to confirm the shipment. I speak to an agent and she politely tells me that yes everything was keyed in and all my products were to ship that day. Relieved, I say thank you and we end the call. Later. Much later that day I get a voice mail saying to call them because their is an item on back order. Well when I get the voicemail it is after a nap. Come to find out they are eastern time and I have missed them. So then I call the next morning. The representative tells me that all my items have shipped except for the pouches. Ugh. No pouches? I then say it out loud. "no pouches, what the hell am I suppose to do with no pouches?" This of course is said in a not so polite tone. Right after I say it, I hear the instant play back in my head. Did I really say it like that? YEP! The lady on the other line says to me "oh, I see you are a new patient. Let me see what I can do." I breathe and say "thank you and sorry for sounding so rough, your news just pushed my panic button." She tells me to "hold." Apparently girl on other end doesn't care for my "sorry." She comes back on and lets me know that an alternate bag will be shipped out. It will be shipped out that same day and that the correct item will ship when it is no longer on back order. My question is how can something like this be on back order? Of course I know how but seriously when it's your item that is needed you never want to be on "back order."

We end the call and I plan to let it roll off my shoulders as this is nothing to hold on too. But not 10 minutes later the phone rings. Its Sterling Medical. It's the same representative. She tells me that the bags she told me would ship are on back order too but that another type of bag (the clip kind....a kind I don't like to deal with) would be shipped instead. "sorry." she says. Call it karma, but I suppose I deserved that for the above mentioned "hell" comment. So yes sorry I was to hear the news. Not only would I be getting all my supplies at once but I would be getting bags I don't want to deal with. Ugh.

So fast forward to Friday evening. The UPS man stops and drops my supplies. I open the box and although prepared that the bags wont be in there I wasn't prepared to only get two of the items I ordered. Yes, I got an incomplete order. I was missing like three other things. I emptied the box. Looked for a concealed compartment and nothing. Nothing. Just two of the items. Not only that but by the time I got the package, Sterling was closed so I couldn't call them to find out what happened. the call I got was only about one item being on back order...not three. To top it all off, the bags still have not arrived. I though maybe they would come on Saturday delivery but no that didn't happen. So I suppose I will be up first thing and on the phone. Inquiring about the missing items.

Well let's see what else, what else can I tell you. I will interview my first oncologist tomorrow. Her office is less than 12 minutes from my house so that is a plus. It is at a hospital and I know the hospital well so that is another plus. Am I nervous? Yes. I wont lie. I am very nervous. Trying to focus on the positive and asking God to guide me but my fears are in the way. Damn you fears.

My nurse comes tomorrow to help me change the appliance. Cant wait. They are built to last five days but day four my skin gets super itchy and it is very bothersome. You see you just cant get to the itch.

I am out of pain medication and will have to call the doctor and beg for more. I am sure I will feel like a junky begging for more but really it is what helps me sleep at night because of the pain and discomfort. I cant get comfortable and my back kills. I am fairly pain free during the day but I think it is because my focus is shifted. I have to think about the babies and be or rather try to be on my "A" game so that they can still get the love and attention from mommy even though they describe mommy as "sore and slow" with the sweetest little voices.

Lance is gone to KS for business. This week should prove to be a tough one w/o the hands of another. My mom will be roughing it till Friday morning. Pray for her to have extra super powers this week. She'll be dealing with three babies.

So all the while I have been blah, blah, blah. My mind has forgotten about the pain in my belly and back. So friends, Thanks for reading and helping me find some comfort if only briefly.

My cuff is cancer free!
ML

First Post Surgery visit with Surgeon

So yesterday I completed a count down. I was able to get to see the surgeon for my first post surgery visit.

Let's just say the visit came with surprises....not of the greatest kind.

So well let's see. Where to begin.

Ah yes with the information I tried to gain to prep myself for the first visit.

I called the office ahead of time to find out what to expect. I spoke to the nurse. He told me that Dr. H would be looking at the laprascopic sites of entry, my bikini line incision and feeling my belly around the stoma are. It was possible he might want to look at the stoma but doubtful at this point.

I was at peace now knowing what to expect. My concern was that they would have me take the appliance off and then be stuck putting a new one on all by myself...which has not happened yet. If only that was my biggest concern after actually going through with the visit....which mind you had to be done.

So off I went yesterday to the appointment. I had clearance to drive myself there for this visit only as I am considered a home bound patient but that I would be allowed to drive just this once......oh the freedom I felt! It was so nice.
I get to the office and wait. Of course I wait. That's what we do in order to see Dr. H is wait. I did follow instructions and call down to the office and see what the "wait" time was. He was an hour behind so I drove down to the med center later so that I would be there right at the hour behind mark. I got there with about 15 minutes to spare, early....not really my thing but maybe I should change that habit. Old habits die hard though.

So my actual wait time in the waiting room was about 12 minutes. Not bad. I then go back to the small and cold exam room. I wait another 7 minutes and he pops his head in the door. Say's to me, "I've been wondering about you." He instructs me on how to undress and quickly leaves the room or door way rather. The nurse comes in and helps me to place the drape. She leaves. I then wait. Pants down to my knees top pulled up to bra line and a drape in a cold room. I wait and wait. I wait so long the auto lights shut down, which is actually fine because I snooze. It must have been another 12 minutes before the doctor walks in and says "oh, spooky." because I was lying there in the dark. So he chats me up a bit and while over looking my incisions. He mentions that the bikini line is a bit crooked. I mention that it was to begin with. See they entered the same area as my two c sections and I think it was a bit crooked from when they had to go in and get Campbell out in a hurry. No worries though because no one sees it. I don't even notice.

So then he instructs me to roll over knees to the wall. That he has to do an internal exam. A What? I explain to him no one told me. I had tried to anticipate this visit. He smiled and said well that nurse isn't getting their box of chocolates now are they? ha! NO they are not! I say. He also said well maybe they thought you wouldn't come if you knew. Darn right...kidding. But it would have been nice to mentally be prepared. However, how prepared can you be to having something placed in your bottom when awake. I of course smiled politely and rolled over. Suffering the torture but learning that all looks "great for three weeks out. right were we should be healing wise." is what I heard from my behind.

I was then instructed to get dressed and meet him in his office.

So dressed I get, feeling happy that exam was over. However, I would soon learn that exam, that same exam I would need to have every two weeks until the take down. Oh my, load me up with some anti anxiety meds please!

I get to the office and learn the above mentioned repeating exam news. Great. Then I learn some other news. news I wasn't expecting. First off he had asked me where Lance was when he first poked his head in. Now I would learn why he had asked for Lance.

So well let's start with the good news. The good news is that my internal pouch is healing perfectly but oh yeah I heard this from "behind." The take down will stay on track. I say, "9 more weeks." he confirms. Then for the bad. The bad is well it's bad at first....I was in shock. But now that I have sat on it overnight, I am still overwhelmed and trying to figure out if the news is still bad or well...not so bad. It defiantly isn't good but then again it might be.

Here it goes. The bad news I got was this.

I HAD rectal cancer. Yes! I did say cancer. But the word that I might need to focus on is this. HAD. You see they removed my rectum. It was part of the deal. Since I was not having the surgery just because my UC was way out of control. If that was case I would have just had my colon (large intestine removed) that surgery would have been called an IPA. However, I was having the surgery because of the dysplasia that was presenting. So that that meant two organs had to be removed. It was an all or nothing deal. No surgeon I interviewed was going to leave me with the rectum in tact. So as I sit there looking at the doctor with my jaw on the floor he mentions that it was a shock to him too. They weren't expecting this news. We knew there was the dysplasia in the colon but here. This was a surprise. He proceeds to tell me how the cancer was in the rectum but thankfully had not gone through the wall or in to the lymph nodes. Praises for that! I interject...is this why you asked where Lance was? He looks at me and says "yes. I didn't want to have to give you the news alone." Still in shock but mouth now closed I asked "what does this all mean?" the doctor then goes on to inform me that I will need to see an oncologist. That there is a possibility that I may have to go through chemo and/or radiation treatments. But that the only way to know for sure will be after I meet with an oncologist. That the 1centimeter left of my rectum....this piece is crucial for the internal pouch to work. It is now called my cuff. That cuff holds the internal pouch in place. The same internal pouch that I (we) prayed so hard would be allowed to be created with in me. That same pouch could now be in danger! You see if there is cancer on the cuff it will need to be removed. The cuff will have to come out. The internal pouch will be no more.

I am NOT ready to hear this news. I want the internal pouch. God knows/knew my desire for that internal j pouch. He knew/knows that I so want it to be hooked up in 9 weeks and for it to work. Oh the other hand if there is no cancer present than the pouch will be hooked up and then I will have to be closely monitored as there will always be a chance that cancer could come to that area since it was already present in the rectum prior to surgery. Heaven help me because God you know. You are the only one that knows how this will all play out. This is not my plan. If it was I would have never ever been sick. I am sure that you have a reason for this path, this yet another to me that is, speed bump. I pray that you will cure me. That there will be NO cancer in the cuff. That there never will be.

Dr. H was very sad to share this news but kept saying...."you really needed this surgery, it is so obvious now, you so needed to have the surgery." Yes. Yes indeed I did. I can not believe that I was walking around with cancer and never felt poorly. I had no symptoms of being sick. Not that I know how it feels to have cancer. I am sure not all cancer patients feel ill at the time of their diagnosis. Ugh. One more thing to worry about. So now, now I search out an oncologist and fast. Dr. H mentioned that I would have a variety of tests done to determine the course of action but that we needed an oncologist on board from now on.

(Deep Breath) as I write this now on this new day. This day two knowing the news. The news I share with you, to come to you for many many prayers and good thoughts. For a cancer free cuff.
For now, for now I will call the doctors he listed for me to contact and one more that a dear friend who is a nurse gave me the name too. I will focus on what I can. that is finding a doctor that is good and that can get me in. I will focus on talking...taking it to the Lord in prayer. I will reset my mind and focus on the bright side. That being it was found and taken out even with out knowing it was there. So the word HAD. I HAD cancer will be my new motto as I beg God to spare me any more.

Blessings on your day,
ML

Pain

I am having pain at or rather around the stoma site. It is not get to the hospital right now kind of pain. It is just constant and nagging. It is something I am praying goes away before 9 weeks because I cant tolerate it. The nurse said it is just a bit of skin irritation even though my skin is not breaking down or even close to that. She said that since we have changed the seal twice in two days my skin is just a bit raw. It will get better. It just didn't hurt this way before day one change.

So tonight I am asking God to bless me with a good night's sleep in comfortable positions and for this pain in my side (literally) to GO AWAY!!!!

Good night!

3 weeks

Three weeks ago I was under the knife. I can hardly believe that its been three weeks.
I have nine weeks until the 12 week mark. The 12 week mark is important because it is then when I have the second surgery!
The only reason it would come sooner is if my skin around the stoma starts to break down.
Let's hope that doesn't happen as I have heard that is very painful.

I have five more weeks until I can pick up my babies and resume life somewhat like I had been use to pre-surgery. The next five weeks is where I feel the most pressure and anxiety. I have come to terms with the 9 weeks of waiting. But I tell you the last few weeks that I haven't been able to be the mommy that they are use to has been a tough road on all of our hearts. Mine, the babies, my husband and my mom. To top it off I have concluded that Travis is teething. His two year molars are bourghing down on the gums and pushing. no signs of break through but the pressure is the hardest part. Molars and I teeth are the worst for little ones. I am pretty sure his will come in back to back as most of his teeth have. He is just really grumpy and cries a lot. At his two year check up the doctor ruled out other issues and agrees that the teeth may be preparing themselves for coming in. Oh the joys of motherhood. But it is even more joyful (I say that in the most sarcastic way) that I cant bounce my boy in my arms and then snuggle up in the comfy chair in his room. Have him lay on top of me and snooze. These five weeks will be really hard. I know they wont remember and blah blah blah but it hurts. It hurts a lot!

Two days. I have 2 days until I see my surgeon. That is always an anxious visit because he is super popular and busy. So waiting during an appointment time is to be expected. But I am hoping he tells me that all is healing from incision areas and that so far so good.


Now, now that I have that off my chest lets see how things are going.
My stoma and belly have shrunk. I hear this is normal and that it will continue to do so. I have ordered supplies and they have yet to arrive. I have a home nurse that is coming twice a week. She is nice but I think she is use to patients that don't talk as much as I do. I had a sub nurse today as mine is taking the week off. She was nice and a talker. This nurse however had instructions that I was to be more hands on with removing my seal and bag today. I am always anxious for these appointments and anxiety could be my middle name. I am a very anxious person. Confident but anxious...always worried and almost never satisfied until it is just right. I guess that's why I had UC is how I use to joke around. So today when I was expected to be hands on was I ever anxious. My heart was RACING!!!! It went well. I was rather impressed with my ability to know and handle the steps. She still did a lot but so did I. My biggest fear is the seal breaking away from my skin and a leak. I understand this may happen. I am pretty sure it may happen and yet I still worry about it. I guess I do because I don't feel 100% at taking everything off and reapplying. So I pray that God blesses me with no leaks and no skin break down. All the while asking him to heal my internal pouch so that I may meet that 12 week mark.

So 9 weeks, 5 weeks and 2 days. Those are my count downs. Praying it goes by fast and gets easier.

some days

UPDATED: note to self is RAW APPLES w/o skin make TUMMY HURT!



Some days are better than others I have found.
I sleep well and then I don't. I feel great and then I don't.
I am feeling mentally on my game and well....not so much.

Tuesday will be three weeks since my surgery date. Thursday is my first post operative visit with my surgeon. It will be nine weeks until my second surgery and five weeks until I can attempt to pick up my kids. I am looking forward to this week and all it has to offer.

Eating, well my appetite is slowly coming back. Right now I can eat and tolerate the following:
Applesauce
Yogurt
Boost
Water
Raw apples without skin
Homemade stew (mainly the broth and the potatoes in it)
White bread
White Rice
Noodles

The main idea is to chew, chew and chew the food so that nothing blocks my small intestine that is working.

I did in fact enjoy a very small piece of two year old birthday cake today to celebrate my son's birthday today.

The party today or lack of it weighed on me. I felt like he was being cheated with no celebration other than mommy, daddy, nana and sissy. It was a nice day and I know he loved all his new things. It just didn't meet the expectation of what I had hoped for. Meaning, I had greater dreams of his birthday with other little friends. But I knew weeks ago that wouldn't happen I knew it would be small, family only. But I didn't plan for how tired I would be and just how absent I would be from the day. I slept most of it. I feel like it was his special day and mommy didn't get to be apart of it all.

So again, some days.....some days are better than others.

home

I am home. I am grateful to be home after 10 days in the hospital. There is so much to say but I just don't have it in me right now. I am battling sleep deprivation, pain, discomfort in daily life's challenges and just plain feeling sick today. I am hoping that I am not getting a fever, I feel feverish. Warm, normal, warm than cold. But no temperature yet. I did have my first visit with the home health nurse today and I must say it went better than expected but that is a whole other post.

So for now, I am home. I am grateful to be home.

but the BIGGEST reason for my log on tonight and post is this.

Thank you! Thank you for all the prayers and well wishes from so many people.
I cant tell you how much it meant to me to know that others were lifting me up.
I continue to ask for your prayers, maybe I shouldn't but I need them for 100% healing of the internal pouch (J pouch) for comfort with my ileostomy and for just 100% healing at home. My children have been touched by mommy's absence and we are working on behavior and know it will take time especially because mommy is home but not 100% able to be involved. It is confusing for them and hard all around.

Again, I thank you!

Wednesday Update

Hi blogging friends. ML is still in the hospital 9 days later. In the past few days they have been trying to diagnose the reason for her fever and all the pain. They have narrowed it down to an abscess her abdomen and a bladder infection. She has been on a antibiotic drip for 2 days but nothing has really changed. They will do another xray today to see what is happening. The nurses have been not as attentive so that has been a huge source of frustration for her. Also, her ileostomy bag has modernized and no one really knows how to attach it correctly. She thinks that she has a handle on it now, but the nurses for sure need training. God is in control in the midst of all of this and she will pull through. The journey is just a little harder than she expected, but she is learning a great deal about patience which I am sure she will you in on later. Please pray that she can make it through the thanksgiving holiday joy and hope that she is on the road to healing.

Sunday Update

At hospital with ML~She is about the same as yesterday except her fever is coming and going. They think she possibly has a abscess but will have to do a CT scan tomororw to verify. If this is the case, they will need to drain it from abdomen. It seems that she has been on a rollar coaster physically, one minute great but the next bad. She will probably not go home tomorrow, but she is okay with that since she wants to be doing well went sent home. She cherishes all the prayers! Thanks for checking in!

Saturday Update

Hi friends. I am hanging out with ML tonight so I have a little more scoop on what is going on. She had a really rough morning. She took a shower and then her body started shivering uncontrollably and tensing up. She started to get a fever which she still has tonight. She had a xray and had some blood cultures taken to see if there was any sign of infection and to see where the pain is coming from. She had some physical therapy on her arm today and it is doing a little better. Please pray for her because she is discouraged and feels like everything is out of control. I keep reminding her that God is in control, and will not leave her. She will get past this!-Michelle

Friday Update

The doctors are trying to manage pain medication for ML. There is speculation that she has been given too much pain medication and that has made her feel bad. Also there earlier there was so much pressure that her stomach area was really hard like she was pregnant. It seems to be better and she has walked two laps in her area. (She might have pushed herself too much in competition with the younger patient in her area! Ha ha!)   She was visited by the neurologist today and  is having physical therapy on her arm tomorrow. There is not yet a clear diagnosis on the problem.  I am going to visit her tomorrow so I will have more updates.

Right Arm

Merry Lynn is still is a lot of pain. She is really worried about her right arm because she has no feeling in it and has little control. The doctor has not seen this before, so they are sending in a neurologist. They think it might be the way she was laying on it in surgery but after 48 hours it should be better. She had her first soft foods, but it is making her feel sick. She will not be released from the hospital until these things are better. Her energy level is very low, but she still is attempting to take steps.  Please pray for her spirits and more importantly that the doctors can find what is happening to her right arm. I think this is more disturbing to her than the surgery itself. -Michelle

Pain Management

ML is dressed in normal pj's and the catheter is out, but she is still in immense pain. She will not be released tomorrow, as expected, due to the pain. God we know that you are the great healer, please strengthen Merry Lynn. When we are weak... YOU ARE STRONG! 2 Corinthians 12:10

Prayer Answered

ML had a long enough small intestine and it can be hooked up to the internal j-pouch! This means that the external pouch is temporary! God is so good! 

Out of Bed

ML, after lots of pain and vomiting last night, attempted her first steps today. She has a will!! She is still in lots of pain, but moving forward and even sat in a chair. Let's continue to pray for her recovery today!

ML is out of surgery and in recovery. The doctor said everything went well. I will hopefully have more details later.  Let's pray for her recovery that she will wake up with the same peace and that she will not freak out with things attached to her. God, please give her a supernatural peace when she wakes up and give her clarity of mind to think of blessings her life instead of the aftermath of the surgery.

 Thank you so much for praying!!-Michelle

Still in Surgery

She is still in surgery. Going on 7 hours. Nurse says things are fine. We know that some of these surgeries have taken 9 hours so that gives comfort. Pray peace for Lance and her family.

In Surgery

ML went into surgery at 8:30 as scheduled. They are hoping that she will be out by lunchtime. Will keep you posted.

At the Hospital

Hi blogger friends, this is ML's neighbor Michelle. I will be updating through the morning. ML is at the hospital and being prepped as I type this. She is surprisingly calm, but she did mention that she was starting to get a little nervous. Let's pray that God will sustain the calmness in her spirit and that she will close her eyes with the recgonition that He is in control and that he knew the plan for her life even before she was born...that she remembers ALL that He has blessed her with even though she struggles with her earthly body. Let's also pray that God gives wisdom to the doctors and clarity of mind.

"For God has not given us a spirit of fear, but of power and of love and of sound mind!" II Timothy 1:7

"God us is our refuge and STRENGTH, a very present help in trouble." Psalm 46:1

Final hours

I am calm, much calmer than I thought I would be.
I can only attribute that to prayer. Mine but mainly that of so many others. Others that have prayed over me and for me.
I thank you. My heart is deeply touched!

I wanted to share with you the words to a song that has revealed itself to me. I am in love with it and it has come to me on days when I needed it most. It drove me crazy because I thought to take note of it and didn't. Not until today. Some of you may know it. It is by JJ Heller.

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

When You walked upon the Earth
You healed the broken, lost, and hurt
I know You hate to see me cry
One day You will set all things right
Yea, one day You will set all things right

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands
Your hands that shape the world
Are holding me, they hold me still
Your hands that shape the world
Are holding me, they hold me still

When my world is shaking
Heaven stands
When my heart is breaking
I never leave You when...

When my world is shaking
Heaven stands
When my heart is breaking
I never leave...
I never leave Your hands


I know God will not leave me. Again I thank you for all your prayers and I go to sleep with a peace about me.

48 hours

The clock is ticking away. My mom arrives today. Yahoo. But it's not as exciting as it would be if she was just coming for a regular ole visit.
Am I nervous....kinda. I feel confident in my Doctor and that the Lord will see me through.
What I think I am most nervous at this point right now about is leaving my babies on Tuesday morning for three days possibly more if I have to stay longer. Travis is sick, Campbell could get it (cold). They both have never really been away from Mommy. Yes, there was the time Travis was born but she was little not even 17 months, so she doesn't recall any of it. Now she is three, Travis is almost two. I feel my presence will be missed. I am nervous for them. NOT because they wont be alright with Nana because they will be more than fine. Just nervous for them not understanding where Mommy is and Daddy being gone too. That they wont understand that Mommy wont be herself for some time after returning home. They are too little to understand. They are too little to ask God to be with them during this time because they don't know what this time consists of. So I am nervous. I am nervous for my little children.

So if I could please ask you to keep them in your prayers. This mommy would be so grateful!

ONE WEEK.

I have one week. One week until I am sliced open and parts are removed from my body. One week until an appliance makes my body it's home for 12 weeks. One week until my life changes so drastically. One week to pick my kids up, roll around on the floor with them and have them climb all over me. One week to be really "real" in an intimate way with my husband and not feel like less of a person. One week to run around and do what I want. LESS than one week to eat anything and everything that I want. One week to look at myself in the mirror or undress w/o feeling as if I am subhuman. One week to get odds and ends in order. One week to be completely overwhelmed with all that I have on my plate in the non surgery side of my life......I wouldn't have it any other way. One week. One week. One. Week.

Earlier I was told to not count down the days but rather make them count. I think that might be the best advice I have received so far today. So let's see just how I can make them count.
First off I need to continue to give it all to God as when I do I feel so much better. After all I am not in control and try to remind myself daily of this. I need to play. Play with my husband, kids, mom when she gets here on Sunday and with my friends in the mean time. I need to appreciate all that I have. I have been blessed and I should be SO thankful.

So as I try to make the most of my ONE WEEK. To really make it count. I ask you....how are you making this week count? This ONE WEEK.

Counseling

I had another round of pre-surgery counseling and I was so happy to go and felt so good leaving.

"I will not leave you comfortless: I will come to you." John 14:18 (KJV)

Thinking and dwelling on those words tonight.

If you need to do the same, feel free.

hard to believe

It is hard to believe that in two weeks I will have been 24 hours post surgery.
I am feeling much more at ease than in September prior to my original surgery date.
I am choosing not to fear this. This is a miracle that was placed before me back in June.
I could have not gotten the colonoscopy right? I could still not know that there is a very high chance that I was on my way to developing cancer. So I am choosing not to place blame but rather be thankful for the blessings that I have been given during this portion of time in my life. I continue to focus on the fact that God will not forsake me. He is with me constantly. I have made a decision to give it all to HIM. Is this hard? Yes. Yes, there are still moments when I want to cry and blame God for this speed bump. But I must keep moving forward knowing, really knowing that God did not "do" this too me. God will heal me with the knowledge he has in trusted to doctors and other medical caregivers. God will heal me.
ML

November 1st

It's November 1st, 2009

In 17 days I will have my surgery.
I am walking with God at this very moment....I know I do always but it is more "real" to me that he is with me. I guess it's true that when you are sick or hurt you find "more" in your friends. The song what a friend I have in Jesus comes to mind.

So as I get closer I am going to find comfort in the thought that He will never leave me.

Happy November everyone....make it one to remember.
I don't think I will ever forget November 2009.

whose mind

so I have been dwelling on the words "whose mind"

My mind. My mind has been driven by my emotions. I have been overcome with fears and all the evils that lurk. While you might say that "it's normal." I say "it might be."

But I don't want to be normal. I want to be secure. Secure in knowing that I will be taken care of and healed. I want to be secure that when I envision my surgery day I know that all will be right and just. That the day will be perfect. Doesn't that sound weird? Often you hear people describe wanting a day to be perfect as their wedding day. Well this surgery day is kinda like a wedding day because my small intestine will be reworked and reconnected to my body in a way that will need to be with me "till death do we part." So yes. I want to picture that day perfect.

I trust that it will be. Each day more and more. I know that God will bless me that day. That he will instruct the doctors and nurses to use their minds and hands to create in me a new and wonderful plumbing system.

So "whose mind" is finding peace, diving into the pool of God's peace. I am. I am trusting in Him and I will be swaddled in comfort that is peace. I will not be afraid.

Focusing on Isaiah 26:3

Counseling

I went to some pre surgery counseling today.
It was refreshing and gave me a great perspective.
A new way I MUST look at things.
I have been running on emotions and I must let my mind take control of my thoughts.
I must not run SCARED but rather run with TRUST.

Something I am thinking about tonight is Isaiah 26:3
Specifically the words "whose mind" in that scripture.

When I switch my thinking and my views (not self centered but Christ centered) I will find that I will be more at peace. I believe this to be true.

If you would like to leave me a verse that you like to TRUST in please feel free to do so.

Till the next post I am thankful for all the blessings in my life. I am confident that I will be taken care of and carried at times when I can walk no more.

God has blessed me with a "long" small intestine, I believe this to be true. Amen.

Just when you need it most.

Yesterday was a terrible day. Today was better. For the last few days I have had the antsy pants. Very emotional pants. I have been stressed to the max. I have felt my heart race in my chest so hard I thought I might be finishing a marathon. Something I have never done mind you. Though, I can imagine that might be a hefty beating heart at the end. I have felt my blood rushing though my veins, trying desperately to get through them. Made me wonder if they were clogged.

I did have some wonderful help from some MOPS moms last night through calls, prayers and emails. I thank you. I was able to feel a little better just talking with my mom about the run of the mill stuff....I didn't have the heart to tell her I was troubled. She is miles away and I didn't want her to worry. Sorry mom.

Today. Today though was a brand new day. We all slept in like almost 8am. We had morning baths and drove to the zoo. Rode the train, rode the carousel, saw the biggest elephant, giggled at the meerkats, awed at the giraffes, shared pizza and got a little wet from a bit of rain. We came home had awesome naps, all of us napped. Then we had early dinner, breakfast for dinner...yummy! Headed off to dance, back for a fruit snack and off to bed. Oh today was so much better. You wouldn't have even thought that days before I was thinking I was having a heart attack! So glad today was a happy and a non anxious day!

What made today extra special and gave me something to fixate on now that the kids are in bed are the two sweet things that were sent my way. Funny that I am pretty sure each of these women didnt realize when creating and writing would they mean so much at just this very moment. Two items filled with grace. My mailbox about sung praises when I opened it and found a card, the kind of card that you can feel the hug as you read the words. Thank you Dallas for taking the time to write those words in that card. Than I received an adorable scripture flip book from my neighbor Michelle. I love it and it's perfect!

So those two items along with the wonderful day with my babies really did this mama some good just when I needed it most!

New 30 day countdown

So in one month I will be having my surgery. I will at this time (it's 9am while typing) will be under for at least 45 minutes so far. That is if the surgery starts at 815am as scheduled. So I guess it is official, my mind and heart are pounding and as each day draws closer I am sure I will be a ball of emotions. But I do know for sure that I have God's arms around me, asking me not to be afraid.
I will try to listen. For now, one day at a time.
Enjoy your weekend and if I might, remind you to pray for a "long" small intestine please.
ML

Happy Halloween From My Happy Place.

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Count down gearing up again

So it is getting closer to another 30 day count down until surgery.
I am not feeling as anxious at the moment. However, I do not want a repeat performance of the last 48 hours prior to surgery. Just say no to unexpected home caused renovations!

I am pretty sure that as the clock winds down and the day approaches I will feel the anxiety and emotions overtake me. I just roll that way. But for now I am going to be "present" in all that I can do and will be doing in the days prior to my surgery. For there will be days ahead of me that I will not be altogether with it after the big removal.

So here is to happy thoughts, whole hearted prayer and joyful days!

ML

$$$$$$$$$$$

Called in to see what my portion of the surgery will be with just the doctor this morning.
I knew it would be more than the 370.00 I was to pay if my surgery had stayed scheduled back in September. Our new insurance calendar year started October 1st and originally we had hoped to avoid this but with what happened unexpectedly to the house I felt that too much chaos would be to hard so I pushed the surgery back. I pushed it back and back it went to the start of all the new deductibles, etc that come when the insurance year starts. The good thing is the follow up surgery will be at 100% come late January.

I know I shouldn't be all doom and gloom about a now $546 due to the doctor. I mean I could not have insurance. I could have insurance that doesn't cover as much as this does. But man....I could buy me the stroller I have been dreaming of with that money.

My husband reminds me that I'd have a nice stroller but might not get to enjoy pushing it if I don't have the surgery. So BOB Revolution....you will have to wait.

Mom's flight is booked

So yesterday I was "thinking" of moving my surgery date for very self absorbed reasons....non medically!!!

My mother either must have been thinking of me or she must have seen my post. Because low and behold this afternoon after bible study I found a email from US Airways with a travel itinerary attached to it. It was my mom's one way flight information.

Well I guess I cant disappoint, so the show will go on.....so to speak.

November 17th

That is the day my surgery has be rescheduled for. So again the waiting starts, the anxiety comes and goes. My biggest concern today is should I postpone the surgery until after the new year. I know, I know. I have to get it done. I have to do what is best. I just would like to feel 100% during the holidays.

I am almost certain that I will always find an excuse but seriously the thought of pushing it back for my own holiday happiness doesn't sound so bad to me. BUT. BUT what if waiting causes issues. I would never know now would I. Only one knows for sure and He certainly isn't going to disclose that too me. So. So I shall dwell on this thought for a while. I learned today that worry and mediation have the same mechanical functions just a difference in thoughts. So basically if you know how to worry, you know how to meditate. Never thought of it that way. I know for sure I am a worrier. Off to meditate.

ML

a week later

Well it is a week later and life seems to be on track. We still have a hole, it is covered up but it is still there. The playroom ceiling never caved in but is peeling badly. Constant sweeping. The A/C was replaced today and man that was a big job. Not that I did it but those guys were working all day and sweating badly. It was warm here today but it is HOT in the attic! I have some dry wall guys coming for bids to repair the hole and the ceiling in playroom. Than when that is done I will get the carpets cleaned professionally. All this has been a great distraction but I have to admit that now I just have more time to worry about my new surgery date. I honestly hope I don't go through the emotions that I did leading up to Monday of last week. I was a mess. I cried so often and got mad too easily. Mainly, I cried. I cried a lot. So when the 17th of November draws closer I hope that there is less crying and certainly no remodeling or home improvements of the unapproved kind.

Praying and searching for drywall,
ML

this was what I got the eve before my birthday.

Playroom, where buckets are collecting drops of water from the ceiling.

The dripping ceiling in playroom which we are sure will give way.

Mess from the fallen ceiling as we clean up.

Her bedding was taken down right away to the washer as it was covered except where she laid her sweet self, sleeping soundly.

The hole. Doesn't look as bad in this picture but it is terrible. the air handler sits right there and I was SO scared it was going to crash right through.

Happy Birthday to me!

So today is my big day! My last year of thirtysomething!
What did I get for my birthday......a surgery postponement!!!!
While secretly I am relieved I am also not happy about the reason.
Last night our a/c decided to throw us a curve ball and part of the ceiling in Campbell's room came crashing down. Their is area that is threatening to collapse in the playroom downstairs as well.

So while we were up late last night dealing with wet drywall, carpets and an a/c that I pictured crashing all the way down from the attic. We decided that the surgery would be pushed back as there was NO way I was leaving my home in shambles, my children disrupted more than they already would have been, my mom left to deal with contractors and the like while my husband was out of town the following week from my surgery. It was just to much to bear.

So now, now we are re booked with doctor and hospital for November 17th.

I will post pictures of this hole in a while but for now I guess we wait and fix the issue at hand.
I do want to thank everyone for their prayers and thoughts, please keep them coming.

Sunday

So this morning I was all fired up to write this post about how much my life sucked and how much I hate having to have this surgery. I was really DOWN!!!!!!!

But now at days end. I do still hate having to have this surgery even though I know it is for my own good....I wont have UC anymore (surgery is only cure) and I wont have these nasty very high grade dysplasia turn into colon cancer! In fact I wont get colon cancer because my colon and rectum will be gone. But I still hate having to have it because my life will totally change. You see I am not currently suffering from my colitis so even the surgeons have said that I will be taking a step backwards when most people really sick with their UC look at the surgery as a step forward. So this, this and all the nasty little details is what gets me DOWN.

However, as I go to bed tonight I am feeling not so DOWN as I did at the start of the day.

I went to church and that always makes the dark seem brighter.
My family loves me.
My friends are wonderful.
My husband and daughter baked and frosted me the most beautiful cake.
I got a great card from my husband today.
I saw "love happens" with Michelle and my mom tonight. Good movie.
I am placing my fears onto the Lord. Isaiah 41:10

Night.

One week til it's my birthday

So we are celebrating early because in one week I will not be able to eat cake. I will not be able to enjoy a glass of wine, a margarita or champagne. I will not be able to eat my favorite foods all that day. I will not, I will not, I can not. You see I will be clear liquids only that day and as clear as some alcohol might be I wont be able to even have a sip to enjoy my ringing in of my last year of being in my 30's or to celebrate (I use that word with caution.) the surgery the very next day.
Oh the drama is building. I can feel it in my head and heart. I can imagine that y'all might think I am a bit crazy that my concern is that my birthday will SUCK this year but it's my birthday and I'll cry if I want too as the song goes. So I thought it might be fun to have you all share with me your poopiest....ha, ha! get it! birthday ever. It'll make me feel better.

Praying for a L-O-N-G small intestine!!!
ML

Wednesday will be a busy day.

So this coming Wednesday I will drive into the medical center to spend most of the day being poked and attempting to learn a little something too.

I will go in for my pre operation work up. Blood tests, physical and EKG. The nurse who booked my appointment said depending on the physical I could do some other tests too. So it is a "get there and see" type of scenario I suppose. After that is all said and done I will be heading over to the one hour surgery class. Apparently I will learn all about what will happen that day in general terms and talk to a nurse about the ileostomy. I am really hoping that they will have the bags that I have been told to use or request. Apparently they are Velcro closure or attachment and work really well.
Everyone is different and I have read some great "bag" experiences and some pretty terrible ones. I will be hoping for the best and praying that the 12 weeks with the bag go smoothly and quickly. From what I understand the biggest concern I should have is that I don't have skin break down at the stoma site. That it can be quite terrible if that area should be come infected.

My mom also arrives this day so since I will not be available and Lance will be out of town for business I will be making arrangements for her to be picked up at the airport. My very generous neighbor Michelle will be once again tending to my children along side her two. Which if you could see them together it appears as if there are two sets of twins 17 months apart. Bless the woman that ever happened too. When my mom gets to my house she will stroll over to Michelle's and visit and pick up the babies. They sure will be delighted to see her.

I am so excited to see my mom and have some fun mommy and me time prior to her baby being operated on.

So Wednesday should prove to be a busy one and I just hope it all goes well and smooth for everyone.

Two weeks out!

OK, now I am getting scared!!
I am officially two weeks out from surgery!
I think I am about to lose my mind about it. I have been anxious and nervous all day.
I couldn't quite but my finger on it but then boom it hit me.
Next Wednesday my mom arrives and that leaves me with one week.
Excuse me but I might have to go throw up now that I got that out. I feel my heart racing.

Praying,
ML

20 days

20 days until my birthday so 21 until my surgery. I keep praying for clarity and calmness, I think I am beginning to feel it as I have this resolved feeling coming over me. However, I do pray that some how I could be healed prior to the surgery. That a miracle could be preformed on me. Maybe my miracle is that I have this surgery. Maybe the miracle already happened back in June when I had my first colonoscopy with Dr. H.

So as the days start and then fade away with a new one approaching as the clock ticks down I can try to remain calm and resolved in knowing that God blessed the doctors with knowledge and that all will be well in good time.

Exactly one month till surgery.
And if you go by blogger time stamp of posting then scarily enough almost to the exact time too.

tick tock tick tock

So it seems like the days are going by so quickly. We are almost at a month out. I feel like I have so much to do in such a short window of time. Most moments though I want to think about and attend to anything but this surgery and all that pertains to it.

I got a call from Methodist yesterday about pre-registering and I ignored the call. Then they called my cell phone. I listened to the message and a sinking feeling came over me.

I am sure that as the days draw near I will be growing ever more anxious and panic filled. I must remember though that I can not control this and that I should just surrender to it. Of course I know who is in control and I need not be afraid however, I am but a mere human.

Guess what I am getting for my birthday?

Well the day after my birthday technically.


I am getting a "colon reduction!" Blah ha ha! I kill myself!

Okay so if this is going to happen, really happen than I have to get through it the best I can right.
So seeing that I have always wanted to have some "work" done I will just consider this being the start to the new and improved me. Grin.

So September 23 I will be admitted to Methodist hospital with a surgery time of 5:45am

We will be checking into a hotel the night before in the medical center as I will have to be up hours prior doing some lovely "prep" work for this surgery to be a go.

Anxiety is setting in but I am trying to occupy my time with things such as housework, MOPS, meet the teacher night for Campbell next week, preschool starting a week later, starting a new business, finding a therapist to "talk" it all out with, going to church, working out and let's see what else? Any thing else sign me up as I want to get it all in before some serious down time.

Finally praying, praying for peace in my heart to trust this will all work out for all involved.
ML

So surgery might be sooner.

So I have been mentally sound with the idea that my surgery is scheduled for October 13th. Knowing that it was a possibility that tomorrow Dr. H could reset the day didn't seem to phase me too much because I was fine, just fine with the 13th. BUT then....then I went over an email my husband sent me about open enrollment for our benefits and it said that the new insurance calendar year starts October 1st.

October 1st.....OH SHIT!
October 1st and October 13th don't jive.
The surgery would have to be pushed up and not by Dr. H but by, by ME!!!
OH SHIT!

I was up last night in the middle of the night for close to two hours having a panic attack. I wanted to just cry. I wanted to wake my husband up in the middle of the night and cry. But I didn't. I stewed, I fussed, I rolled over and over. I felt like my hands and legs were twitching and I couldn't stop. My mind was running and I couldn't catch up. I really wanted to not be the only one up but I was. I just couldn't wake him besides I was sleeping upstairs in the guest room/office due to the fact that for the last two nights my husband was snoring like a bear and I couldn't sleep. Oh three nights with little sleep you can imagine how tired I was today.
I don't recall when I dozed off I just remember being awoke by a little voice saying "Mommy, I have to go pee, pee."

So today in my fog of a state I called the insurance to double check and sure enough a new calendar year starts October 1st and with it comes new deductibles to be met. So the agent kindly said "it would be crazy not to move the date of your surgery up."
Goodness can't a girl catch a break.

So sooner is September and tomorrow we will find out what the new date will be.
Stay tuned and goodnight.

ML

gasping for air

I have a pre-op appointment with Dr. H next Thursday in the morning and then will be registered for a hospital tour and teaching class for the illeostomy. My surgery is set for Tuesday the 13th of October.

I am gasping for air right now because this is really "REAL" now. There is no way around it or out of it. I am going to have to have the surgery. I pray God will grant me the favorable results I desire. The favorable results I desire is a perfect j pouch is created, I have the illeostomy for 12 weeks and then have the second surgery or what some call the take down in which the small intestine is reconnected and takes on the role of small intestine, colon and rectum.

Stay tuned,

ML

God can you hear me?

I am here. I am speaking to you my fears, my concerns. You already know them. But are you listening to my heart, my mind, my voice? Can you hear me?

Right now I will say it out loud just so this earthly creature of yours can be sure that she used her mouth, heart, mind, lungs and vocal cords (hmmm is there more that goes into speaking?)

Lord, I know that I have to have this surgery. Please grant the doctors and nurses amazing talent and knowledge as we get ready to move forward and while they are working on me. But most importantly dear Lord when you stitched me together in my mother's womb, can you remember if you blessed me with a long small intestine? Because I am going to need it. I will trust and pray that you did because w/o the long small intestine the j pouch portion of my surgery will not take place. Dear Lord, I desire the j pouch portion of the surgery. I desire that the J pouch is a success in my body. I have been taught to tell you of my desires, that you will provide. Please find favor on me. Bless me dear Lord with a long small intestine so that the end result will be healthy fully functional j pouch patient. Amen.

One word, I can't do more...right now.

Surgery.

cleaned out and checked out.

So I finally drank the stuff and well all I can say is poo poo. Yuck!

Today I went for my appointment and what should have been a 1/2 hour procedure with 1/2 hour recovery time turned into an almost 2 hour then 1/2 hour recovery. I woke up towards the end and asked them to put me back down....rather I begged! But they said they couldn't give me any more sedation. Damn it! is what I wanted to mutter. So I closed my eyes and tried to relax.

At the last colonoscopy they gave me real sleepy stuff this was more twilight. Difference, no anesthesiologist. The nurse pushed the twilight. I like the Dr type of push much better.

So this is what I learned. Dr. E took lots of biopsy's and cleaned all polyps out of my colon. He did go up into my small intestine a bit and said it looked great so I can not worry about that anymore. There are stories of people who were told they had UC and then ended up being Crohn's patients.

One particular polyp had to be "piece mealed" away. And by the pictures it sure looks like Dr. E did just that. Looks like....."OUCH!"

So what I remember him telling me is that "I did all I could. I got everything needed out. Hopefully we can save you from surgery." I craved more information but being loopy he knew I wouldn't understand much more. He told me he would see me in a week. Probably hear from him in 3 days. So now I wait. I do however have beautiful colon pictures to gaze at while I do just that.

Waiting and Praying for NO SURGERY!,
ML

Procrastinating clean out.

So here I am blogging. Reading blogs and checking Facebook, yahoo mops board and email. All the while procrastinating the worst part of the day before a colonoscopy. Drinking this terrible terrible solution that will "clean" out your insides. I have already not eaten all day, swallowed the laxatives at the assigned time, drank only clear liquids or the liquids that were on the "approved" list. Now, it's time. Ugh! I hate, hate, hate this part. Did I mention HATE!

Wish me luck on getting it down as often I fight back vomiting. Too much information.....read the disclaimer to the side.

Also, please please pray for me tonight. Please ask the great healer upstairs to spare me from surgery. Please allow for the first diagnosis to be incorrect. I so want to hear good news tomorrow when I wake from my sedated nap. Bless Dr. E with the ability to kindly break the news if there is no change and surgery is then moved up on the "to do" list. And may he sing praises to the Lord if there is Good News when I wake.

Please let my colon be dysplasia and cancer free. Amen!
ML

2nd Colonoscopy Scheduled.

So I will be going under again.....I actually don't mind the going under part....its the getting ready for the going under I don't like.
UGH the prep work for the colonoscopy is brutal! I hate every minute of it. The whole day before is just plain "shitty." No pun intended either.

OK, now that I have said my first naughty word on my blog we can all relax. After all I did post a disclaimer right? Right.

So next Wednesday I will be meeting Dr. E down at the medical center for my colonoscopy.
He has already told me that he plans on taking out the polyp that was left in my transcending colon for further inspection. His plan is to take like a million (OK so not a million but you get the picture) biopsies of my colon. He also is going to go down inside the colon and not just biopsy the top layer.
I looked a little frightened when he said that apparently so he calmly said to me with a very thick accent. "don't worry, I will be sedating you much heavier than normal." Well alrighty than, nice deep nap for this mommy. Sign me up!

So there you have it folks. Next Wednesday I might have a better picture of where my future lies. Dr. E told me he might be able to wake me and say "no surgery" or give me bad news.

Let's pray, Let's pray really hard that the news when I awake on Wednesday afternoon is "no surgery."

My colon in dysplasia and cancer free,

ML

Making things happen

So I called this morning to get an appointment with Dr. W. The doctor on the list of two that Dr. H said that I should call for a "second" opinion colonoscopy. Well this Dr. W doesn't take my insurance so I went to the second Dr. on the list. Dr. E. Dr. E, I learned takes my insurance. Dr. H thought that Dr. W and I would have more face time but I will just have to have less face time so that my insurance will cover the time I do get.

So I make the appointment with Dr. E, it was set for July 31st. Hmmm, that's a long time to wait for just a consult prior to a second colonoscopy. But Dr. H told me that would happen and that as soon as I set the appointment I was to call his nurse. Then he would push it along.

SO I call Dr. H's nurse, Nurse Jackie. Tell her the appointment time and date. She says "we'll handle it."

I get a call later, about two hours later from Dr. E's office offering me a date of the 28th...I thought to myself...that's not much better than the 31st but instead I say, I cant take that date because my son is getting tubes in his ears that day. By that way that is a true comment, not just one to get an even better date. So then all of a sudden the 22nd at 230pm pops open. I say "sold."

So I have the appointment with Dr. E. I will meet him at 230pm on the 22nd.

Dr. H has already talked with him about me so it should be short. Just basically giving me my prep assignment and the day of my colonoscopy. I am assuming this to be the case so lets see what really happens.

Till then.....My colon is dysplasia and cancer free!!!!
ML

Mind over matter.

All day I have been walking around chanting "My Colon is dysplasia and Cancer free."
Chant it with me folks...."ML's colon is dysplasia and cancer free!"

Wouldn't it be amazing if it was and I didn't have to have this surgery. At least at this stage of the game. I mean I KNOW one day my colitis will come back, one day I might get colon cancer because of this disease but wouldn't it be nice if I was spared. If I was spared at this particular stage in my life. I just really have so much I want to do right now. I feel great and to take a year of my life feeling ill just feels like I am being cheated. That my family would be cheated. Can you hear a little anger in my words. I am a bit but I am more excited at the chance of hoping I might be spared.

So I am chanting, I am visualizing, I am praying that I be spared.

"My Colon is dysplasia and Cancer free!"

ML

Dr. H calls personally

UPDATED July 18,2009 (morning)

As mentioned I had called the nurse and she said he may call me over the weekend. Well he did call only to get my voicemail because I was putting the kids to bed for the night. I listened to the message and heard him say to call the online doctor and tell him that Dr. H needs to speak with me. His message also mentioned that if I didn't talk to him until Monday that would be fine as well. Well I was not going to wait until Monday. I picked up the phone and called the on call doctor and left a message. Then the wait began. I waited and waited and no call back. Finally I decided to go to bed at 10pm and the phone rang. Lance brought it to me saying it was Dr. H.

My heart sank into my stomach as I said hello. It then began to be lifted back up into place as he spoke. He told me that I need to contact one of the following two GI's for another complete work up. As the main pathology at Methodist in the loop felt there just wasn't enough information to perform a major surgery. That we needed more to go on. I gasped. He said I was a grey zone and that he doesn't operate on grey zone patients until more information is retrieved. Dr. H also said "I don't want to get your hopes up but there is a chance that you wont need surgery." He continue to say that their are polyps and dysplasia. In UC patients it can be tricky BUT that I could just have Polyps that need to be checked on once or twice a year. My heart was dancing as it was still on the words "chance that you wont need surgery."

On Monday I will call Dr. W (one of the two doctors that he recommend that I call) to schedule the work up. Tonight I start praying that my colon be healed that it show not signs of high dysplasia that the 1st GI thought he saw and biopsied. That there just be regular ole polyps in my colon. Do you have time to pray a little pray for me on this issue. I would be grateful.

Praying,
ML




So today Dr. H rang. But didn't leave a message. I couldn't get to the phone in time as I was busy trying to get my little ones into their rooms for naps. I called back like three minutes later and this is when I found out that he called personally. My thought....NOT good news.
They told me he was now in a room with a patient that he would call back. When I didn't hear back I figured that it wasn't a big deal but that I might try calling down to his office again.
I got a hold of his nurse and she said she wasn't sure what he was going to tell me but she did know that he did talk personally to the Dr. that is reviewing my pathology and cell slides. So, Hmmm. That left me thinking that either he was calling to tell me that I need to come in....but why would he call me just for an appointment. Unless it was the "come in" for a new colonoscopy call that he told me that I might have to have if this certain Dr. reviewing my cells and pathology report from my GI didn't agree on my diagnosis. So here it is Friday night and I am pondering what the call was about. Maybe it was just to touch base....doubt it. But the nurse kindly said she would tell him that I called and mentioned that he may call me over the weekend.

I am pretty sure that I wont hear anything till Monday but till then enjoy your weekend and stay tuned.

Bracing myself,
ML

Dr. H it is!

So I have crossed into the threshold of starting a relationship with a surgeon. Yes. I have decided on a surgeon. With out further ado, I have selected Dr. H. Yes the doctor that I had to drive down twice to meet but this meeting was so worth it. I actually feel like a HUGE weight has been lifted off my shoulders. I think that I might sleep well tonight. Last night, after a child woke me who then didn't want to go back to her bed but after coaching did, this mommy then had a panic attack. One so bad that I almost got up to blog about it. But. But I decided that I would try a relaxation technique instead. It finally worked and my panic attack soon faded.
Tonight, tonight I think I will get some rest.

So back to Dr. H.
Dr H is a middle age doctor with some grey, I probably have more than him but I'll chop that up to the stress in my life. Grin.
I felt at ease, he has a great bedside manner.
He explained a lot to me, some things that were not covered by the other doctors.
I learned that not only will he be doing the surgery laparoscopically but also with a robot. Now I thought that was kinda cool. I think I might have been saying inside....Kick Ass! but didn't want to say it out loud for fear he might say oh you grew up in the 80's too.
He explained that the robot is special and his practice is one of few that are in this specialized study to do this procedure with such a surgical assistance. This is good news to my nerves. No, not the ones that people get on but the actual nerves endings in that part of my body. The robot is able to see all the nerves and can limit or not allow nerve damage.
I learned that his surgery schedule is 4-6 weeks out. That I have several more steps to go through before going in for surgery.
Dr. H let me know that it would be six weeks before I am able to lift my babies.
Dr. H also told me that most his patients leave the hospital after surgery one at day 3.
That in all the area that I live in that the Methodist Hospital in the loop does the most j pouch surgeries and is the leader in this area.
That my cell slides will be ordered and his pathology and another pathology team will review them. That if there is any discrepancy that I will go in for another colonoscopy with a GI specialist in dysplasia and cancer.
That my bum will need further examining...oh joy. Just what I want. A finger and a tiny camera up my butt while I am awake. Believe you me I told him that I would need some calming drugs. He told me that could be arranged. Hmm can you see this relationship blooming. He actually heard what I said to him. Cant say that to be true of my spouse most of the time.

Most importantly I just felt like I was with the person that I was suppose to be discussing all of this with. I really believe that God kept having me search til we met.
Dr. H is my surgeon and I am happy with this decision.

Praises,
ML

Meeting of Dr. H part 2

Tomorrow late day I will drive myself once again to the medical center to meet Dr. H.
I am hoping he is worth the trip. Ha....my stab at humor.
This week I will also be taking a trip down to MD Anderson to see what they might think about this little situation I find myself in.
I will of course be writing about all of it as the week unfolds.
One thing that I am excited about this coming weekend is this......My parents are coming to town! Oh for that I can not wait!

Stay healthy,
ML

Dr. H a no show

So I drive all the way down to the Medical Center at a earlier appointment time than scheduled because the called to say they had a morning opening and after waiting and waiting in the little exam room I meet a fellow, will call this fellow Dr. M. She was very nice. I was very annoyed at first as I came to meet him. They told me he was called into surgery but than I found out he was gone all next week (which is now this week because I am writing this late). So hmmmm. I am thinking friday was not a surgery but that they didnt know how to tell me that the doctor decided to make a splash into his vacation. Well, the truth might have been good but I suppose it sounds bad to a patient that the "Dr. took the day off."

Dr. M, the fellow, did end up smoothing things over even though I dont think that was her plan. She was very nice and informative. Answered a lot of my questions and understood my concern. This kind fellow also reminded me that we need to get past bridge 1 before trying to get over bridge 10. Well if you know me I always look further than I should so getting over first bridge while not looking at how to get over the 10th will be hard for me.

So needless to say I didnt meet Dr. H but instead built a slight relationship with Dr. M the fellow. Which led this patient, less fired up than when I found out Dr. H wasnt going to see me, made an appointment to come back to meet him on the 13th of July. So I wait another week....honestly I am not in any hurry to have this surgery as I am so apprehensive even though I know it has to be done. Ugh.

Praying for peace of mind,
ML

Off to meet Dr. H tomorrow

Well I am off to interview surgeon #3. Dr. H is down in the medical center and I have hopes that I will have a clear decision after tomorrow on which doctor to choose. I still have a visit to MD Anderson but my mind is feeling like that might not be the place for me. For one I don't have cancer. Just precancerous cells. Two, I don't think they will tell me anything that I don't already know. I am pretty sure because I have already asked the other surgeons and so far the answer is that no surgeon will just cut out the segment of colon that has the tumor.. Three, I feel as if they will tell me that they cant help me even though I had the appointment because they deal with cancer patient.

Dr. H however did complete his general surgery internship at MD Anderson so that does make me feel like he might give me an insight tomorrow on whether or not I should take that last interview there. I am also worried about all these interviews and just how my insurance is going to handle the doctor's fees.

So this week I have been feeling well but nervous and anxious at times.
I so appreciate all the comments; rays of hope/prayers that are being left.

There will be a post tomorrow on the meeting of Dr. H tomorrow so stay tuned and good night.

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 there....to 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 time....no 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.

Questioning,
ML

Today

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.
ML