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!