Oncologist

So got a call from the oncologist...will need to be seen in early November but prior to that I have to go in for a chest X ray. I double checked to make sure I wasnt suppose to do the CT scan..nope just a chest X ray...apparently the increase of lung cancer after colon cancer is common so they are concerned about my lungs....last November they thought something was a miss but it was nothing. Lets hope for more of the same. Never smoked a day in my life....what a joke if my butt ends up giving me lung cancer.

There are....

There are just certain days where the bathroom sees me more than anyone else in my home.

Not because I am there to gain my sanity but I am gathering some relief....so to speak.

You'd think that after one year and three months since my take down that I'd be "regular" but no.....no. and did I mention no.

There are just certain days....this just happens to be one. Main reason I am particularly bothered by it is this....It's Mother's Day and well I just don't want my children to grow up remembering how often mommy was in the bathroom.

Like I said....there are certain days.

Sigh.

So a while back....

A while back I had posted about something in/on my lungs that the oncologist had wanted a repeat xray as a follow up from my dehydration stay at the hospital back in November. Well....well I was to get it done in February and that month was taken over by house hold sickness including me. Than March came and went and before I knew it, it was April. So in April I got a call saying to go do the xray and add a CT scan as well. Now the CT scan is routine for following that tiny bit of rectum that is still left. Want to make sure that little guy in there stays cancer free!

So now we wait for word. While I was waiting I apparently missed, as I had forgotten all about my appointment with the doctor yesterday. Yep, yesterday I would have had news from those two reports....sometimes I would like to still blame my forgetfulness on the anathesia drugs. But reality is....I just plain forgot....that's what you get for not flipping the calender!

So they were kind enough to set me up for a visit next Tuesday. I asked about the results and of course the scheduler couldnt say a word. So I wait....and yes, I've got it marked on the calendar that is now turned to May.

May your May be full of blessings!
ML

Talking about a Take Down

No big celebrating today. But I did take a moment to think about it all. What am I am talking about you might ask? I am talking about a "take down." Mine specifically.

One year ago today we drove down to St. Luke's and waited for my turn. My turn. My turn to in my head (at the time) to be cured. To be cured of my "friend" that had been attached to me for 12 weeks. Really a blip in time but those 12 weeks last year were the LONGEST 12 I have ever lived. Nothing in my now 40 years of life had been so horrific, worrisome, aggravating, mentally debilitating. Oh I could go on and on about my feelings at the time of my "friend." Believe me when I say that then nothing I had ever experienced was as bad and well I have had my share of crap.

But now. Now as I look back at it. I see it more as survival. I survived what seemed terrible then but seriously it now doesn't seem all that terrible. Especially when I think...I am alive and well and so far so good. Whew! Would I want to go back. OK. Let's be honest. NO! I pray the good Lord will bless me with how I am now for the rest of my living days.

Thinking back to this day I remember prior to going back my biggest fear was that I wasnt getting my dear Dr. H to preform this last step. There was another person waiting. Waiting his turn. This guy was actually in step two of three steps (I only had to do two steps which only means that I was not terribly sick at the initial phase.) but he was waiting for his turn at being "cured" I am sure in his own mind. This guy, would later become my hall walking pal. He was a young new father and in from a small town in Texas. His parents and wife and baby would visit almost every day. Ironically he went home before me. Yes. Yes I tend to not stay the minimum days....I was in for a week. Longer than expected but well nothing is typically the norm with me.
So back to Dr. H. We both were scheduled with Dr. H. Who would get him. I knew I wanted him. I wanted this genius doctor who had spent hours and hours 12 weeks prior specifically creating this wonderful new j pouch inside me to do the honors of my "take down." Dr. H did do the honor but apparently I didn't start out with him. I remember going back after praying with Lance to yet another operating room. Knowing the real work had been done in the first surgery didn't calm my nerves. I wouldn't be good with it all until I knew my "friend" was gone for good. Until waking and knowing it was no more.

I some what remember waking hours later in recovery. Asking "is it done? is it gone." The nurse didn't really know what I was referring too and that's when my sweet husband said "just rest, it's gone." The next thing I knew I was in my room and waking pretty coherent but soon the pain would be too much and the sweet sweet drugs they would give me would help me to sleep until late the next day.

I remember being so happy. So happy and anxious. So happy and anxious and in pain. So happy and anxious and in pain and bloated with gas. Oh that gas was the killer. Seriously I looked as if I was pregnant but in a nightmarish sort of way. It was as if I was carrying a baby but in my side above my left hip. It was just locked there. It took days to go away. Walk, walk, walk and just like the moms that get to walking to get the labor going. I got to rid my side of that gas baby. Days later and it was a pain literally in my side.

I was in the hospital a week and during that week I progressed into my new reality.
My new reality living with my new system. My j pouch was now not a silent partner waiting to heal. It was real and ready to work. My new me was yet to be revealed to me because I sometimes think I am still figuring it out. Learning to become good friends with my new "friend." The one I wanted so badly to be "friends" with. My J pouch. But just like "best friends" we have our good days and then we have some spats. Some days I swear it hates me.

But as I remember this day and am grateful and thankful for all those that helped me and my family. I also want to say that this take down, the one I prayed would be successful. Is indeed showing to be just that. As I mentioned I feel like I am still figuring it out but I am happy. Happy to have recovered to the point I am at on this day. One year ago, I would not have known that the journey was not over, it was only just starting when talking about a take down.


Biggest thought of my day was this: Thank you Lord for this day!

did I mention

So did I mention that when I was in the hospital in November I was diagnosed with pneumonia?

Well I didn't have it but was treated for it. Apparently they found a area of interest on my lungs.

Hello I was in pain and couldn't breathe...hence the area of interest.

Oh well. I had a follow up x-ray done at the end of NOVEMBER and just found out today that I have to have a follow up x-ray done first of next month.

I asked "why?"

Well I was told...."it's nothing to worry about."

I said so than "why am I having another x-ray?"

The reason given. "to see if the infiltrate has corrected itself."

Ugh, "infiltrate?"

Yes. But "nothing to worry about."

So I guess they didn't realize that "worry" is my middle name.

Stay tuned.

Almost at a year

As I booked a check up with Dr. H yesterday the feelings of how anxious I was last year flooded my mind. I was so very anxious for the take down surgery. I am so ready to stop wearing the appliance on my side. I was nervous that in a few weeks I would no longer have a home health care nurse. I had to survive the last two weeks w/o Rose and it was a nervous time for me. That bag and stoma can be tricky. But mostly I was fixed on counting down the days till the second surgery.

Soon it will be a year from that surgery and week stay at the lovely St. Luke's Hospital.

I can tell you that it is not romantic to spend your valentine's day in the hospital. But I was however very relieved that I was put together and working on learning the new me.
Romance had all but been put off to the way side during this time in our life. I suppose, love took on a different meaning.

So my next check up will be exactly one day after the year mark for my take down surgery.
I am hopeful that the check up will show that the jpouch is working as it should and is holding up nicely. I am very happy with it and hope to never have to trade it in.

Am I anxious about this appointment. Well, yes. Yes, I am.
I can tell you that it is never fun to have some one check out your "butt" in the manner that Dr. H. does. So anxious. Yes. But happy that all is mending well as far as I am aware.

Happy New Year's Eve 2010

Wow! This year is quickly drawing to a close.

I can say that I am happy to have it fall "behind" me...ha! ha!

Last year on New Year's Eve I was in so much anticipation of the new year coming because it was one step closer to my second surgery.

Now that it is wrapping up I am thankful for the great strides in recovery I have made.

I am looking forward to a blessed 2011 with GREAT health and remaining cancer free as I will in 2011 start year two of five being followed by the oncologist. I think I have mentioned that while my cancer was removed at surgery time I still need to be followed. Crazy how I was given the statistics of a five year mortality rate for colon cancer. I surely hope I will beat the odds. God grant me that.

2011...I great you...just minutes away now.

my own little wrapping

So after being on the mend from this two step surgery. With one anniversary behind me and approaching the anniversary of surgery step number 2 I have come to the conclusion that the wrapping left behind was not so pretty.

It's not pretty or neat. It's not colorful. I can not even see it. But it is there. Some days wrapped pretty darn tight.


What wrapping am I talking about....well that would be scar tissue.

I think I have the most at the the ostomy site. While the scar from the outside still shows and well doesn't flatter my tummy...it could be worse. So I'll take it. Most days I don't even notice it. But when that naughty wrapping on the inside tightens up....oh what a pain.

Does anyone else have this issue? I am pretty sure that it was partly to blame for my blockage back in November with my hospital stay.

Tell me about your wrapping. I'd love to swap stories.

Still healing,
ML

One year.

Today marked the one year mark for my first surgery.

I felt kinda strange the days leading up to this day. Nothing like last year.

Today I have to admit I was kinda emotional.

Recently I spent a few days in the hospital and was reminded of just how special this J pouch is to me. Meaning, I was told that I had a small obstruction....all I could think of was losing my j pouch. I probably freaked out way too soon but if you can remember I had this surgery NOT because of my colitis being out of control but because of potential cancer....then having cancer found...so the hole idea of having yet another surgery or going back to life with the appliance came rushing back to me. Praises! Things seemed to resolve in my inner most areas and I was out by the weekend.

A year ago I was walking a dark path. Thankfully I was blessed to be guided out of it.
Sometimes I think of this past year and realize all that was revealed to me.

God's grace, strengthening relationships, maternal love (my mom is AMAZING), true friendships, children and resilience and just the amount of pain one person can take....emotional and physical. Thank goodness for God, family and great friends.

Truly this past year would have been different without that trio.

Here's to many more years of celebrating being cancer free and j pouch in tact.

Been meaning....

I've been meaning to do an update but when I sit down to do it something comes up or I am beat. I usually did blog updates at nap time but well...I've been napping during nap time. The other time would be after bed time for my kids but well than I have to do some work since I was napping during nap time. Mainly I just need to get on it. So I will. I promise you. Be prepared and do bring a snack as it will be a long one.

Post Op visit

Well I had my post op visit today for the second surgery. It was suppose to be Monday but silly me forgot. I have a good excuse....I have a total of 11 months to recover from anesthesia brain. I was told by a fellow patient that for every hour you are under you have to take that many to recover memories or memory. So....yes I will recover but being forgetful now has a good excuse. Grin.

So the appointment was reset for today. I immediately asked what to expect from this appointment. I was transferred to a nurse. The nurse assured me that I would not need to take an anxiety pill because there would be no....well....no butt exam. That the appointment would be all about looking at my incisions. So relief is what I sought and that is what I got. I was just not interested in having my bottom examined. It is "working" so to speak. So much better than I ever expected. I have heard some pretty scary stories but I have heard some good stories too of what to expect post surgery. I am thinking I fall closer to the good stories at the moment than the bad. I praise God for that because I am already dealing with more bathroom trips than I have had in years. I was warned about this. All the surgeons I interviewed told me that while I recovered from final surgery and maybe for months afterwards that I would feel like I did when I had active colitis. That I would be in the bathroom a lot more than I had been over my three wonderful years of remission. Well. Well they were right. Once my bowel woke up, the last day and a half I was in the hospital I spent A LOT of time in there. In fact I did for the first week I was home. Let's just say my children know where to find me. Thank God my mom is here for the recovery part. Thank God she has been here through this whole thing. Now though, now it seems as if it is starting to know what to do. I have spent much less time in the bathroom this week so far and have gone out on some outings w/o fear of having to know where the bathroom is. That was something I always had to know when I was really sick. Not so much when I was in remission but I always visually looked for them, guess it just gets in your blood. I actually went to a kindergarten and grade school tour yesterday that took 2.5 hours and I never once felt like I need to quickly find a bathroom. I think I got a good one....I got a good pouch.

So back to the visit. Got there and Dr. H was running on time. I got in right away and then waited for about 12 minutes or so in a room for my turn in with the ole doctor. He came in and we talked. The first thing out of his mouth was "so we got ya out of the hospital....under ten days" and smiled. We had joked prior to surgery that I had set the office record for most time in hospital post surgery for surgery number one and that there was no need for me to break records this time. I think I got close. We both had a good laugh over it.

So Dr. H looked over my belly incisions and I mentioned that I thought the prior ileostomy site might be a bit infected because it was starting to bleed and puss. He took a look and said for me to be still and take some deep breaths...to think about the beach. Well I can tell you that as soon as that was said alarms went off and I was in no way thinking about the beach. He snipped at some scab covered stitches and peeled back the stitches. OUCH!!! He said "well you're right. Small infection." I should have charged him for the office visit. Grin. He than told me that he was going to place some pressure to release some fluid that was built up. It was kinda painful. He than packed the site and said "the kids will have a good laugh when I pull a shoe string out of my belly." I said "that's gross." Laughter filled the room and I didn't notice the quick packing and before I knew it he was placing a bandage over the wound. He's good.

We then discussed my bottom. I told him about the burn. Common. He mentioned what I was doing was correct in caring for it. Never in a million years did I think I would be placing diaper rash cream on my adult bottom. But it works. It helps. So I will continue for the mean time. Hopefully it wont be forever. We also discussed my "going" and how it was going. He was impressed. He said things sounded really good. So again...I have a good pouch!!!

He shared with me some other positive news but I am choosing to keep that to myself and my family for the time being. I hope you understand. But I can tell you that it made me very happy. God is listening and making my life better even after I used his name in vain way back when this past summer when all of this dysplasia/cancer/surgery stuff started. I can say I was angry. So angry. But I should have never used His name like that but I did. I know He has forgiven me.

The visit today was a good one. I have a bit of discomfort at the incision site and still the surgery soreness going on. But all in all things are looking/feeling really good.

Dr. H gives good pouch!!!

What on earth...

What on earth am I doing up at 1:51am!!!!

Well.....

I got up to "go" potty for like the third time since 1opm and my husband is snoring and my tummy is gurgling and well I don't know which is louder. Except I don't think it's really my tummy as it is gas. Locked gas that hurts.

The kind of locked gas that makes you freeze one moment in pain but then sprint to the bathroom because if you release it you are not sure at this point if it is locked gas or well....poop. Yes, yes, refer to the right hand side of this blog. There is a lot of poop or butt references here. Deal with it.

I am also up because of butt burn. Which might not be so bad once the pain pill kicks in. No I didn't take it for the burn but actually for the pain and well in hopes that maybe it would knock me out and I would sleep despite the snoring plus gain comfort from the pain.

I will talk more about butt burn and the cause in another post but just know....it's not pretty. Worse than a sun burn....a really bad sun burn. I promise you that.

So that's what I am doing up. If you are up at crazy hour reading this than you must post a comment answering this question....what on earth????

HOME!!!

I am home! Couldn't be happier about it.
I slept well in my own bed. Got up twice last night.
I am feeling worn out today though. Must have been the excitement of coming home!!!

Look for a up to the minute, factual, what happened post in the next day or two.

THANK YOU for all your prayers!!!

Set Back

Hi all,

Merry Lynn is having some set-backs after this surgery. I have not reported much this week because it seemed like everything was going well despite her constant gas in her abdomen and pain tolerance. She went #2 in the potty and that was a huge victory. It felt very natural and she felt like she "needed" to go and she did. HUGE! I asked her if she wanted a m&m when she got home for her success on the potty! Her two-year old would be so proud of her!

However, last night she spent the entire night throwing up and they have taken a cat scan or xray (not sure which) to see what is happening in her stomach region. She seemed very defeated and nervous today on my voice mail for what could be happening.

So, maybe I will have more information later when we know what is going on.

Michelle

Second Surgery Completed

Yesterday the surgery took about 4 hours and was a little longer than expected because of scar tissue. However, it was very successful and ML has the bag off!!! She is very relieved but still feel as if it is a phantom bag because she feels like it should still be attached.

She is in good spirits and sounds much better this go around. She has 4 more laparoscopic scars and her stoma is sewed shut! She is dealing with pain of course and is taking it slowly. She has gone on two walks already! The doctors are hoping she will be home by Friday, but she does not mind staying through weekend just to make sure everything is working properly. ("grin"...as ML would put it.)

The hospital that she is at is way more accommodating and they are respecting her as a patient much more. They are checking on her more often, not letting the door slam behind them in the middle of the night, and have way better bed side manners. However, she would like internet connection. You can't have it all, right?

Continue to pray for her that no infection arises and that her pain will begin to subside. She is a trooper!!

Less

less than 24 hours until the take down.
What is the take down I can hear some of you asking. I will try to post on that after I finish up some last minute details this evening.
But basically it is reconnecting my internal plumbing.
Taking it from the outside drip to the inside drip so to speak.

5

Five. Cinco. 5.

5 days until my surgery. The big Take Down!

So very excited about it. But have a lot to do in 5 days. I want to make sure all is order because although I am told I will only be in hospital for 24 hours I know that wont be the case. Ugh, I was in last time for 10 days plus some extra hours. I am banking/betting I will be there at least five. Humph. Now wouldn't that be ironic.

Ticker

So I looked for a fun little ticker. But no luck.
Apparently a ticker for a surgery count down doesn't exist.
But that's OK. I know the clock is tick tocking down.
Hope y'all had a great day!

11th week

It is hard to believe that 11 weeks ago I was spending my first night in the hospital after over 7 hours of surgery. 11 weeks has gone by really, really, really fast. 11 weeks ago I would have told you that 11 weeks would go by really, really, really slow. Interesting.

So with 11 weeks down what do I have to look forward too? One week. One week is what. I will be counting down the days. Maybe I should put up one of those fun tickers.
9 weeks ago I was counting down to the 12 week mark. That seems so long ago. Interesting.

12 weeks ago these were my thoughts. Interesting.

What is the most interesting is this. Peace. The peace that I have felt overcome my heart during this journey. How is has paved these weeks. How peace has entered my home in many ways. Their is a calm that wasn't there prior. Maybe because I was so on edge. Hating. Angry. Resentful. This peace has worked its way in. It did not just show up now at this 11th week. I believe it has been working its way in since June. That was weeks and weeks ago. Peace. It's been busy working it's way in for a really, really, really long time on my heart, mind and soul. It has been working hard to find it's way into my home. I hope it stays because in one week, this 12th week mark I have been hoping to arrive to will be not be with out it's own worry. There will be a surgery although not as dramatic as the one before but no surgery is with out some worry. There will be anticipation. There will be fears. There will be little ones left at home wondering where mommy (and daddy) are. There will be a mom (Nana) left at home caring for grand kids while worrying for her own baby. There will be a husband that is sitting, pacing, updating, waiting. There will be me....praying for a safe attachment to the new plumbing, praying for steady hands of a surgeon and staff, praying that the new plumbing works, praying for my family. There will be me in surgery in one week. So I do hope, I hope this peace stays.

I finally got to this place. Interesting.

check.

I took care of the pre operative blood work and screen today.

It felt nice to get it done and know that I was seeing the light at the end of the tunnel from step one of two surgeries.

Lately I have become confident that step two is approaching and will happen in can you rejoice with me in just a week and a few hours left in what we know as today. It is amazing the journey your mind takes when walking down this surgery road. Depending on where you are you might want the surgery. Or in my case hate every minute of having to have it. But you know what....I needed it! It, with the hand of God, saved me and my family from some very dark days. I believe this surgery saved my life!

Now that I can see that and I have survived over 10 weeks with my friendly appliance I can honestly say that it HAS NOT been as bad as I had imagined it to be. I have been very prayerful that these weeks would pass with healing and no drama. That prayer has been answered. I think your prayers for me have been answered too as I know many of you prayed for me to get well, to be patient and for my family. We have survived these last few weeks and I am so thankful for your prayers!

So clock is ticking down and soon I will hit 11 weeks.
11 weeks post surgery with one week to go for surgery two!