Friday, December 31, 2010

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.

Monday, December 27, 2010

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

Wednesday, November 17, 2010

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.

Friday, April 2, 2010

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.

Thursday, February 25, 2010

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!!!

Thursday, February 18, 2010

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????

Wednesday, February 17, 2010

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!!!

Saturday, February 13, 2010

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


Wednesday, February 10, 2010

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!!

Monday, February 8, 2010

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.

Thursday, February 4, 2010

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.

Wednesday, February 3, 2010

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!

Tuesday, February 2, 2010

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.

Monday, February 1, 2010

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!

Wednesday, January 27, 2010

Pain two down

Pain two down and SURGERY is set.

February 9th!!!!!!!!!!!!!!!!!!!!!!


13 days to go!!!! Please rejoice and pray for me.

Thanks,
ML

Pain one down

Waiting to see Dr. H for pain number two but pain number one....in my side went WELL! The radiologist was so nice and said as far as he could see the pouch looked perfect and held the fluid well with NO LEAKS!!!!!

Now it is up to the doctor to decide. I see him today at 2pm for a lovely dilation. The thought numbs me but soon I will take my happy pill and all will be fine.

I am hoping to get him to bump up my surgery date to next week. I know, it's only a matter of days but that's what I am visualizing here as we sit and wait.

Everyone celebrate with me! NO LEAKS!!!

Friday, January 22, 2010

counting

Counting today. 19 days!
19 days until the take down surgery. 6 days until the scan that will let me know if in 19 days by then it would be 13 days til the take down IF it will really happen at the end of those 13 days.

I cant even tell you HOW excited I am. I get a week off from seeing my doctor as he wants to see me the afternoon of my scan. So I will get poked next Wednesday in the side and the butt. Ah the joys!!!

I truly hope that God blesses me with a clear and wonderful scan in six days.

Monday, January 18, 2010

Not....

Not so bad. My dilation today that is. Maybe it had to do with the pain pill I took prior to leaving the house AND the happy pill called Xanax at the doctors office. It was quick too. Much quicker than in weeks past. NORMALLY the worst 12 minutes of my life. This week 4 minutes top and it wasn't terrible. Dr.H said it was almost perfect, right how we want it to be (the pouch that is) and quick. He said that it had nothing to do with the meds but I might have to disagree as the pain....pretty much not there. Thank God. Because you know how much I love Dilation Mondays. UGH.

So tomorrow I am nine weeks, nine weeks post surgery! Three weeks til the 12 week mark. I can not believe how quickly these weeks have flown. I am so grateful that healing has happened and that we have dates planned to finish the plan. The colon removal plan that is.

Next week we will know for sure. The procedure on the 27th will be all telling.

Pray for NO LEAKS please.

Hope your week is blessed!!!

Tuesday, January 12, 2010

End in site!!!!

I am SO excited & keeping my fingers crossed that I don't hit another speed bump on this journey.
Praying that God allows all the healing and positive thumbs up to continue.

Yesterday I went to see Dr. H.
It was another lovely day in January, a little warmer than it has been...I think it was 45 as the high.
Dilation was well painful. We had me take a Valium but ugh it didn't kick in until afterwards. Oh well as I titled this....The "end is in site!" and well ugh, I am not talking about my butt. Directly that is.

Today I am 8 weeks post surgery!!!!!

Yesterday we PICKED a surgery date for the TAKE DOWN or step two in my two part surgery or reconnecting the plumbing. You take your pick in how you want to vision it but it's true at this very moment we have a date!!!! I think it has been over two years now since I have been EXCITED about a date on a calender. The last time....Travis' scheduled birth. Dec. 6th 2007!!!
Today I look forward to Feb. 9th 2010!!!!

I have another dilation set for next Monday right before week 9 and I pray that all will continue to look as "wonderful" as Dr. H has described it to be. Than a week and two days later I go down to the medical center to "test for leaks." Apparently I will have a catheter inserted into my stoma and they will test to see if the jpouch (second part of the plumbing) has any leaks. Praying specifically for NO LEAKS.

LEAK = BAD!!!

Than after that test it is a 12 day wait for surgery day to arrive. I figure right now, at this very moment, I can now mentally last 4 more weeks. However, at the point of it being only 12 days left it might be a test of my anxiety levels as I anxiously await that surgery day!

Glory be to God that He has seen me through this far and continues to carry me, walk with me and show me grace!!

So there is an "end in site" at least for step one of two. So looking forward to the new beginning and a VERY happy and lasting relationship with my jpouch after the connection.

Tuesday, January 5, 2010

Looking good....

So Dr. H thought that the PET scan results were that of a "done too early" PET scan. Meaning that the brightness that was reflecting on the scan was showing areas of activity in an area that had been under stress from surgery.

He said that internally I am healing "very well."
I did not of course enjoy the exam or the dilation one bit. Dr. Ha did mention to me that I could be sedated for the next one as he knows I am not at all comfortable. It is only about a 12 minute procedure but man it is the WORST!!!!

I am going to think about the sedation as I will have to do this three more times.....Dr. H is thinking that in three weeks after the dilation in week three from now we can follow up with SURGERY!!!!

Today I am officially 7 weeks post surgery and so if in three weeks we will have surgery than it will be 10 weeks plus a few days. I am thinking it will be actually done in week 11. But I am so dreaming of surgery day!!!

Praying for continued healing. Thank you for all you prayers.
ML

Friday, January 1, 2010

Breathing in the New Year.

Yes. I was able to catch my breath and calm down on New Year's Eve after my visit with Dr. B.
This New Year looked bright as we rang it in. No big party to attend or throw. Just a quiet evening....well not really quiet as fireworks are legal here and so it sounds a little like a war zone for hours on end.

So let's get this all cleared up.

The area's of interest was more of a alarming call from the nurse than it needed to be. The doctor said that she wanted to speak with me prior to meeting with my surgeon so that I could have my PET scan disk and the report in case he had not received it yet. She was glad that I was seeing him on Monday because the area's were more "clinical" than what she would deal with. Meaning that the areas of interest...two of them were directly in the areas of surgery. So up and around my stoma and down near the cuff. She said in her opinion it was one of two things. Inflammation of cells post surgery and/or fluid build up. The non surgical site that was noted as a concern was so slight that she felt from the review it was nothing. Apparently their is a node near my aorta that is showing some activity but it is so slight that it not a concern. I guess Dr. H and I will have a talk on Monday and figure out the game plan but for now I am relieved.

So how do they gage all of this. Well when I had the PET scan I was injected with radioactive glucose. The scan, an hour after being still for an hour, was easy. It was the being still that was hard. I am not one to do that. But I had a trusty white little pill that calmed me and I was just about asleep when they pulled me out of the "quiet" room to empty my bladder and then go in for the scan. You lay on this hard surface and they cover you up like they are tucking you into bed. They propped my legs up at the knees. They don't look past your thigh unless they spot melanoma and then they will look further. Apparently cancer of the toe is very rare.

So the scan takes about 35 minutes and I was so relaxed that I was more upset that they had moved me from the "quiet" room.

The scan picks up light and the amount of brightness from the light given off in your body on which the glucose has attached itself to area's of rapidly growing cells gives them an idea of what might be cancer. So the areas that "lit" up on me were 6.75 and 6.3 with a 2or 3 in the node on near my aorta. The doctor said that the brightness wasn't what they would consider "bright" but enough light to have to make note. She has seen brightness that measured at 20 or higher.

So that is very layman terms for how the scan works but as you can see the main thing they measure is the bright factor and mine was low. That is why she was not overly concerned and is interested more in what the "clinical" discussion will be. She mentioned that my doctor may come back and say "oh this is nothing, I see this all the time. It is just fluid or irritated tissue."

Let's hope so!

So friends, thank you for your support! Thank you for your prayers. I was very alarmed and scared. I feel much better now and hope that on Monday afternoon my NEW YEAR continues to be just that.

Happy New Year everyone! I wish you love, health and happiness.

ML