Blessed

I am feeling really blessed right now. I do almost everyday, but right now, I am sitting here in my chair with tears in my eyes. As I sit here, I have my dad cleaning out my bag from my feeding tube meal I just had. I have my friend Tree from church playing with and watching my kids. I have friends Meg and Nora from church cleaning my house.

Some days I just can't wrap my brain around how these wonderful people serve the Lord with such joy. They are here because they have Jesus in their hearts. They all have jobs and busy lives, yet they are sacrificing some of their time, for me and my family, for Jesus. I look at them, and I see Jesus love shining through.

I feel loved, I feel like my family is loved, and taken care for.  I praise Jesus for that. He is the one that led us to Mercy Hill church, he was preparing us for this a year ago when he took us out of one church and brought us to another, I made wonderful friendships with people that are now taking care of my family. I am so thankful for that.

There is more blessings today. Yesterday and today I hardly used my suction machine at all. That means that I am swallowing better.

I was also feeling better this morning because I found myself over by the kitchen counter picking things up and putting them away. Then I thought, uh oh, I better sit down! My friend Missy who was here this morning right then said, "Are you feeling better today?" I said "Yes, but I better sit down" and she said, "That is just what I was going to say!"  I guess I didn't even realize I was doing what I was doing, but I really have to keep myself from doing anything. It is so easy to just start picking up dirty clothes off the floor or picking up toys, but I have to remember, I shouldn't be bending over like that. I shouldn't be carrying anything.  I also have been doing pretty well with drinking water so I thought I'd give applesauce a try today. That didn't go very well. It pretty much just sat there and I had to wash it down with water. Guess I'm not quite ready for food yet.  :( This is by far the most difficult surgery I have ever had in my life. I had two sinus surgeries and 4 c-sections and this is the worst I've ever had to deal with.  It's such a slow healing process, I think that is the frustrating part. Some days I find my mind wandering to I hope this cancer never, ever comes back, I couldn't bear going through this again. I don't even want to have those thoughts!! I need to keep my mind positive about the future, not let the devil consume my mind with fear.

I see God smiling all over my house today with these women here blessing me. My father in heaven is looking down on me saying "see how much I love you?" Everything in my house is being taken care of, so I can just sit here and heal. Thank you Lord Jesus for loving me, and giving me sisters in Christ who love and care for me so much.

Little update

Today I got in to see my ENT in Waukesha, the one I started with, who found my cancer and took my tonsils out. It was good to see him again. I haven't seen him since I had my surgery at Mayo.

He did freeze my nose and scope with the camera down my throat and said there was no active bleeding. He said he did see a spot that almost looks bruised! Obviously he can't tell me for sure that the bleeding won't happen again, but as of today, it looks OK in there. Praise the Lord.  He said he looked over my paperwork from Mayo, and said I should go to my follow up there on the 8th, but after that I should be able to just come to him. He said they can do swallow studies here if they don't take my tube out on the 8th, so that is good news too. I pray they take it out on the 8th, but if they don't, at least I know I won't have to make that 5 hour drive again!! He said the reports from my surgery look good, and he's going to bring it to his next tumor board in the beginning of July with the two oncology docs and see what they say about radiation. I'm a tad worried about this, he did say I shouldn't need it, but we'll see what they come up with together. The mayo doc told me before my surgery that if it was only that one lymph node involved that i would be done. It was only that one lymph node. But when we were there last week, I said, "Are you sure I don't need radiation?" and he said, " I think you should meet with one just so you know all your options" I said, " If it were you, would you get the radiation?" He said, "no". But he still wants me to meet with one. I'm sure it's partly his butt he needs to cover, but I sure don't want this cancer to come back either. So we'll see what my doc out here  and their tumor board come up with when they look at my pathology slides and reports from mayo. I'm praying they say I'm done! So, as of now, I just have to chill as best as I can, relax in my chair and try to do nothing that could cause bleeding. It is super hard for me to do this! I just want to throw laundry in, and make some beds, and pick up my kids and squeeze them!! I want to help around the house. It's really hard to watch my friends taking care of everything and I just sit here! But the fear of bleeding is sure helping me to do nothing. I miss talking so much. I love chatting with my friends and family when they are here, now I just have to be quiet. It's SO hard!!!

I feel blessed that I have made it all Sunday and so far today with no bleeding.

My song for the day is this one. 

I am feeling super blessed by all the help I am receiving. My dad has been amazing. Just simply amazing. He is here for me, no matter what I need. He is such a comfort to me.

I don't know if I already posted this, but when he took me to mayo, we had to stop so I could eat. We stopped at a rest stop, and my bag that my food hangs in has to be hanging up higher then me so it flows down into my tube. There was no where to hang it at the rest stop, so my dad stood above me and HELD the bag for a 1/2 hour!! He just amazes me the things he will do for me and not complain.  My husband slept in a chair next to me at the hospital two nights in a row and held my hand the entire time. My sister has spent the last two nights sleeping here on my couch, just to be a comfort to me, in case I start bleeding I know she's here to get me to the hospital. How many sisters would do that? She has a husband and a dog she'd like to be home with, but she is sacrificing for me, just because she loves me. I always knew these people loved me, the extent of their love overwhelms me when I think about what they are doing.

My friend Mary from church has organized all the people that come over during the week to help watch my kids, bring meals and clean my house, and she has come herself to watch my kids and bring meals. Another amazing women.  She will call and pray with me when I need it. God has just given me everything I need to make it through this.

I would never make it through something like this without Jesus and my faith, and my church family. My church is what a church is supposed to be. They ARE the church, and they love each other and take care of each other. Not something I ever experienced before. If you don't know Jesus, I suggest you seek after him. Get a bible, find someone who does know him and ask questions.  If you don't have a church family, find one. Be a part of the church, be a part of God's hands and feet. It will change your life. I don't mean just finding a church and showing up on Sundays, but finding Jesus. Getting to know him, and how much he loves you. Get to know people at the church, serve at the church, love and be loved. OK, I'll step down from the soap box now, I don't know how I got on such a roll here, it was supposed to be a short update. lol.

Thank you all for praying, he's listening.

love you.

More bleeding

Well, I've had two more bleeding episodes since Tues. On Friday Kevin was out on the tractor and I got frustrated and yelled to him and started bleeding. Ended up taking the ambulance to the hospital. By the time we got there the bleeding had stopped, we spent a few hours there, had a chest xray to make sure I didn't get blood in my lungs and they sent me home. Sat, I was in the chair in the living room, taking a cat nap, I coughed and started bleeding AGAIN!! This isn't just a little bit of blood either. It's quite a bit. I use my suction device, and it gets clogged so I stand by the kitchen sink suctioning my blood and use water to unclog the device. This time I was still bleeding pretty good by the time the ambulance got here. I was choking in the ambulance and couldn't breathe, gagging because the suction wasn't working. At the hospital the Dr. was looking down my throat trying to see where the bleeding was coming from and I coughed and he saw a blood clot that was hiding down behind my tongue, the only reason he saw it for a min was because I coughed. So we had to go in a special room, and he froze my throat and used some kind of utensil to pull the blood clot out. It was as big as a golf ball. No wonder It was affecting my breathing! I had a super nice nurse and he held my hand during the procedure. I am such a baby, I was so scared though because when he tried suctioning it out, it was just gagging me and I started freaking out.

They drew blood, and kept me a few hours and sent me home! I was and still am scared to be home, that this is going to happen again! 3 times in one week this is getting quite scary!!  Last night my sister slept over and slept down stairs on the couch by me, just in case. Praise God I made it through the night and so far all day today without any bleeding. I am praying that It doesn't happen anymore, that I start healing up now!! I still can't believe I was in an ambulance three times this week. I think this is the first time ever that I have ridden in one!!  I pretty much have stayed in my chair today for most of the day. I did take a shower, but I've been trying to basically do NOTHING just so I don't bleed anymore.

Tomorrow I am calling my ENT and going to try and get in to see him tomorrow. Just so he is up to date on what is going on with me since I had surgery at Mayo.

I feel like the most useless person right now. Can't do anything for anyone, not even myself! This is sure a humbling experience, having to rely on others for EVERYTHING , having to have people sleep over, just in case I might bleed.

I am so tired of this all. I just want to heal and be done with this!!

I am thankful for so many people in my life who are here for me and love me. I don't know how  I would do it without them.

Please pray for healing.No more bleeding!!

love you all.

Keeping tube.................

Well I thought it's about time that I update my blog! The last update I wrote was five days after surgery. Today is day 12. I thought I was healing pretty well and feeling better the past few days. My tongue is still really swollen, so it's still hard for me to talk, and I drool and spit all over when I do try to to talk. lol. My pain kinda leveled off. It got bad around day seven or eight, and I called and they said that was normal, that some of the white coating falls off and you have open sores again, which made sense. Now I am back to where I was before. Still using pain medication every 3 hours. It seems that when I notice myself not swallowing and having a mouth full of spit, I'm overdue on my pain medicine and I just subconsciously stopped swallowing cause it hurts! lol.

Yesterday was an interesting day to say the least. Our power went out the night before around 9pm. We woke up and our trampoline was GONE. Just gone! No sign of it! That is pretty scary if you ask me. I felt sad that our trampoline was gone, but also felt very thankful that our house was still standing! That we were all safe! It must have happened when we were all in the basement cause we didn't hear anything. So yesterday am, my dad came over to help with the kids and we were all in the kitchen and Gracie had our cup drawer pulled out, she decided to sit on it, which was obviously not a good idea. The drawer fell to the ground, with her in. I grabbed her hand and pulled her up, then my dad and I both leaned over and tried to pick up the drawer. All of a sudden I felt a bunch of fluid in my mouth, honestly, I thought, did I just throw up in my mouth? So I ran over to my suction device and turned it on, and started sucking and it was bright red blood. I about freaked out. It was just pouring out of my mouth. This was one of those moments of shock! I am bleeding from my mouth what do I do?? Quite quickly we decided we need to hurry up and go to the hospital and everyone got into panic mode, especially me, Ms. nervous Nellie. Jake helped get the kids in the van and the dogs in the house, my dad grabbed what we needed and we headed off. My suction machine didn't take long to get clogged up with blood, then I started really freaking out. Now what? So I handed Jake my cell phone and he called 911. He talked to them, as my dad drove the van towards the hospital. They kept asking where we were and when they figured we were passing a firehouse, they said, stop there. So we did. They put me in the ambulance, It amazes me how calm these guys are when someone comes walking up to them with blood gushing out of their mouth. They are just so nonchalant! Oh, what is going on ma am?? UMM!! I'm bleeding that is what is going on! They are quite slow to get things moving! I had to get myself in the ambulance, and tell them to take me to the hospital! My dad beat us there. How sad is that? So I spent the day in the ER. The kids were there with me for awhile, then Kevin came home form work and got the kids and my dad stayed with me, all day, until finally at like 6pm we got a regular room on the 4th floor. My dad sat there with me the entire day, except for leaving twice to get me clothes and my food for my feeding tube. Kevin and the kids came up around 7pm, they were there about 10 min and Gracie was crying she wants to go home. I guess she really didn't care about spending time with her mom. lol. The original plan was that my dad and I were to leave for mayo clinic this morning at 6am for my follow up appointment. But we didn't know how that was going to happen when the hospital wanted to watch me over night to make sure I didn't bleed anymore. We finally did get it worked out that they would discharge me at 5:30am so we could still go ahead and get to mayo today. My dad picked me up at the hospital at 5:20 this morning. He said he didn't sleep at all last night and neither did I , I just couldn't get to sleep, just worrying I was going to start bleeding again.

So we ran home so I could pack up my stuff and we left for mayo. We got there around 11:30am, so we were even early for my appointments. My first apt was my swallow study, which I didn't do to well on. My first few sips of water I just choked and coughed. After a few more I did just OK. Then they did it with the barium, and they watch me swallow kind of on an xray and see what happens. I didn't do great. It took me lots of swallows just to get down a tiny bit of barium, then she tried applesauce mixed with barium and it took me 6 swallows just to get down one little bite. So she said I need to keep my feeding tube for another 2 weeks. I just cried. I know, it could be so much worse, its only a few weeks, I just really am tired of this feeding tube and really miss eating real food! lol. But I will survive it.

So after that apt I saw Dr. Moore, he wasn't too concerned about my bleeding the day before. He said that happens to 5% of people around the 7th to 10th day, scabs can fall off and cause bleeding, he said that's probably what happened. He did scope the camera up my nose and down to my tongue and throat and saw one little red spot, he said that might have been where the bleeding had came from, but he didn't see any "active" bleeding so he didn't seem too concerned. I guess I need to be more careful at home with my lifting and bending over and stuff like that. I'm sure I will be now, since that happened I am paranoid about it happening again!

I also am afraid to be alone now. I just thank Jesus that my dad was there when that happened. If he hadn't been, we would have called 911 from home and Jake would have had to stay home with his younger siblings. I know he would have been scared. So I think now I'll make sure there is always someone at our house with me and the kids, at least for a few weeks!

So now my dad and I are at a hotel. We are both so tired. I hope I can sleep in this bed. At home I am used to sleeping on the couch so my head could be upright, and at the hospital I hardly slept, so tonight should be interesting. We will be on our way back home in the morning.

The plan now is to go back to mayo once again in two weeks. They really don't care that we have to drive 5 hours, they think that we need to come there for follow up. What a pain. I hope the next trip will be the last for at least 6 months!

That is the latest. Thank you for continuing to pray for healing, and please pray that I will get used to swallowing water and food soon so I can get this tube out in two weeks.

love,

Amy

Simple pleasures we take for granted

If you wouldn't mind, I could use some prayers during my recovery time. I have been having a rough few days at home. I don't know if it's the food that I'm getting through the feeding tube, or the pain medicine or what it is, but something is making me feel ill most of my day.

My tongue also doesn't seem to be getting any less swollen, it is so hard to talk. 

This is just another thing that I realized I took for granted on a daily basis before. Talking. How important and what a blessing it is to be able to talk when you want to talk!

Having to write everything down when you want to say something is very frustrating, not only for me, but for my kids and husband and everyone else.

I wrote down this morning some simple pleasures that I took for granted before~

Swallowing in general

Having coffee in the morning is a pleasure I really miss

Being able to read to my kids

Being able to answer the phone!

Ability to respond to kids or husband when they ask me a question

Being able to call doctors myself and ask questions or let them know what I need.

The ability to yell for Kevin or kids when I need them.

When you can't do these simple little things anymore it really makes you realize how important it was to be able to do it in the first place.

We take so much for granted when we are healthy, that is for sure.

It's pretty easy to see what all our blessings were when they are taken away from us, even simple things like swallowing or talking, they are very hard to live without!

Kevin may be enjoying the fact that I cant' talk I'm not sure. lol. But he's having to make a lot of phone calls to doctors for me and such, and he is not a talkative person, so it's growing him a bit in this area too. I'm ready for my tongue to be back to normal now. :)

Thank you for praying!!

The LORD is good to those whose hope is in him,
       to the one who seeks him;

Lamatations 3:25

Picture of my neck

Here's the scar, that will forever remind me of how great our God is, that he allowed my body to be healed from cancer with a surgeon's hands.

Good to be home!

I thought I'd post a quick update. I pretty much feel like I am in a drug coma right now, the pain is pretty bad both when swallowing and my neck is quite sore, so I'm taking my max of pain medication right now. I don't really like using it because of the way it makes me feel, but I guess it's either feel funny or feel pain so I 'll take the feeling funny right now.

This entire week seemed like such a whirlwind! I can't believe the surgery is over and I am home recovering. Seems miraculous to me!  We left last Sunday afternoon for MN not really knowing what to expect, not knowing what these doctors would have to say and came home cancer free!

I'm sure later I will write more of my experience with mayo clinic but for now I will just say the doctors that took care of me were fantastic. Very very smart guys!!  I'm so very thankful for them for saving my life!

I am NOT liking this feeding tube business one bit. I know, I shouldn't complain. I left home with cancer and came home with a feeding tube, what am I complaining about?!

It's just a pain in the rear. I feel like the back of my throat is covered with thick saliva and I can't do a thing about it. The food I take in the tube goes right through me! I don't like it! lol.

But I will make it through this recovery! It's frustrating to not be able to talk. I guess the deal with that is, it's not just because my tongue is swollen from the surgery of the tongue itself, but that they have to put a device in my mouth to push my tongue down during surgery, and he said my mouth is very small, (who would have thought this?) So it compressed my tongue so much that it made it swell even more, so I feel like I have a big piece of meat in my mouth that I can't move around!  When I try to talk, I spit, which isn't a real pleasant thing for someone who is having a conversation with me. Plus, you can't really understand a word I say. Well, actually Kevin seems to be getting pretty good at it! He would even tell the nurses my pain levels at the hospital. lol.

My family was simply amazing while I was in the hospital. My sister and dad just took on these kids, I don't know how they did it!! Even two nights Kevin slept next to me in a chair at the hospital and my dad and sister stayed at the hotel with the kids. That is a huge job!!! I bet they are so glad to be home!! Kevin was a trooper for me, sleeping  in a chair next to me in the hospital, holding my hand all night. How many husbands do that?! I know the girl next to me did not! That was another weird thing, having to share a room at a hospital. I guess I've been spoiled here with all four of my kids I never had to share a hospital room! I'm sure the poor women enjoyed listening to me vomit. lol.

So I think I'll head back to my chair now and relax. God is amazing. He has allowed my body to be totally healed from cancer without radiation or chemo. He answered lots and lots of people's prays this past week. Thank you Lord Jesus. I hope to grow old and gray and see my kids babies someday!!

O LORD, you are my God;
       I will exalt you and praise your name,
       for in perfect faithfulness
       you have done marvelous things,
       things planned long ago.

Isaiah 25:1

Going home today!

Doc came in this morning and removed my drain tube from my neck. We are going home today!! Can't wait to be home again, it's been a long week for our family.

So it looks like I will be going home with the feeding tube for around 10 days, then we have to make a trip back up to mayo for a follow up appt and they will do a swallow study and remove the feeding tube, and  then I should be good to go and will be able to drink again. I have a "communication" in my throat right now, it was a hole that was stitched up, they don't want me doing anything to damage it for awhile, that is why I need the feeding tube.

If I already wrote some of this, I'm sorry, the pain pills probably make my mind a little goofy right now!

So I will try to update when we are home. Thank you everyone for all your thoughts and prayers, God was busy answering them!!

love,

Amy

Final pathology report

Doc stopped by tonight. I will have the feeding tube for 10 days, then we have to come back here  for a follow up appt. He got the final path report, and it showed only the one lymph node (frank) was cancerous. and the base of tongue, but he got that all out. So that means, no radiation, no chemo!!! After 10 days with the feeding tube, I am done!!!!!!! Praising God once again!!!! Thank you for all your prayers!!!

Recovering well today

Well today is a better day then yesterday!! Surgery is over, thank God. Yesterday was a really rough day for me, I am not going to lie! Things are much different in a huge hospital like this, then back at home. It's more like an assembly line here.  We had to be here at 5:45am, they put me in a really small room and asks me a bunch of questions. Then they said I'd be going down to pre-op alone with out Kevin. I walked down there with the nurse, there was a bunch of beds lined up, with people in them, just waiting for surgery. They put me in a bed, and I just started to get nervous. She said my pulse was 120! So she tried to call Kevin to come down by me, but he was already checked out.  They talked to me quite a bit, said they'd take real good care of me because I am a cheese head. lol. They ended up giving me something to calm me down a few min before they took me to the OR. The surgery took about 4 hours.  When I came out of recovery I got really sick and threw up, which was pretty scary because I have a feeding tube in, and my tongue is so swollen I can't talk.  So it was really hard for me to breathe after I threw up. Last night was a real rough night. Today has been better. No more throwing up, and I've been up walking in the halls. My neck is real sore but we are trying to stay on top of it with pain meds. So the surgery went real well. He said the tumor on my tongue had good margins, he was able to get it all. As for Frank, the preliminary report was that frank was the only cancerous lymph node. Praise God! We are waiting for the final path report yet, I guess sometimes more can show up on there. Praying they don't!! If it's only Frank then I am done!

I guess he had to cut more tissue in my tonsil area, so it left a hole, so he had to stitch it up, that is why I have the feeding tube. He doesn' t want me to swallow anything that could mess with the stitches. So I might have the feeding tube for 10 days. Not pleasant, but could be worse! I am not able to talk. My tongue is too swelled up. He said it's because my jaw is so small, that when they put this tool in to keep my tongue down, it puts lots of pressure on my tongue, which makes it swell real big. It's like my tongue feels way to big for my mouth and I just can't talk! So I write everything on paper, which is a pain, but he said it should only last a few days. I sure hope so!

I am hoping that he will let me go home tomorrow. I think it depends on my drain bag from my lymph nodes.  it doesn't seem to be draining all that much so I can't imagine why he'd want to leave it in there much longer, but I guess we'll see what he says.

So that's the story right now. Today is a pretty decent day. Kevin slept next to me last night in a chair and held my hand all night. He's such a wonderful hubby. My sister and my dad are handling the kids OK, they even put them all to bed last night, which is no easy job!! Thank you for all the prayers, please continue to pray for a quick recovery, that I can talk again soon, and this feeding tube comes out asap!! Oh and also that the final report still shows only that one lymph node as cancerous.

love you all!!!

Amy

Farewell Frank

Tomorrow is the big day, we have to be at Mayo at 5:45am. My guess is that my surgery won't be until like 8am or so, but I could be wrong. Tomorrow Frank and his pals will be evicted from their home. :)

We met with the doc today for a pre-op appt. He said the surgery will take 4 to 5 hours! I was kinda surprised about that. Poor Kevin will be sitting around all day waiting for me once again.

He said my chance of having a feeding tube is 50/50 so I'm praying that I wake up without one!

We did a lot of driving today. We drove from Chanhassen to Rochester for my pre-op appt, then back to Chanhassen to pick up the kids from Kevin's brother's house, then we all drove back to Rochester to the hotel. So, a good 5 1/2 hours in the car today! I am sick of driving! My sister and my dad made the drive up today, bless their hearts. We are all here together at the hotel. We have adjoining rooms, which is kinda nice. Autumn is sleeping with her Aunt Cindy and Gracie is in the bed with Grandpa. I wonder how long that will last? My poor dad. Gracie loves to chat in bed so he's probably getting an ear full right now. I did hear her praying, saying "I hate the devil" I'm sure my dad got a kick out of that. :) It's kinda cozy here, all the family in two rooms like this, makes me want to all live in one big house back at home. ha.

I did get a few days to eat real food again before surgery. We went out to Apple bees for dinner, but I started feeling nervous about the surgery and it kind of ruined my appetite. Oh well. Before I know it this will be over.

I called my friend Mary tonight and she prayed with me on the phone, that helped calm my nerves. I just have to remember who is in charge here. Who's watching over me during that surgery and who is guiding my surgeons hands. My Jesus. If I keep focused on that I won't worry. The great physician is in charge, nothing to worry about.

So I'll be getting up at 4:45am tomorrow so I can shower before walking over to the hospital.  Please say some prayers for me!  Pray it's only that one lymph node, and none others are involved, and that I'm not so sick after surgery this time. Pray for Kevin, and my sister and my dad who have to spend 3 or 4 days in  a hotel with 4 kids.

Hopefully Kevin can update the blog tomorrow after surgery and let you know how I am doing.

Good bye Frank. It was not so nice knowing you!!

Surgery Thursday

We are praising God over here. :)  We made it to Minnesota on Sunday night. The drive wasn't too terrible with the kids. They did argue quite a bit, fought over the TV, the Dsi,  and the game boy. We heard "are we there yet?" and "how much longer?" Probably a hundred times. Sunday night sleeping  didn't go to well but last night was better. Kids are enjoying the time with  their cousins. Kevin's brother Glenn and his wife Teresa are graciously accommodating our family of 6 in their beautiful home. Yesterday Kevin and I made the trip to Mayo, it's about an hour and twenty min from here. We were both pretty amazed at how huge the clinic is.We had to wait in a really long line just to register, it was more like check in at the airport then a doctors office! lol. I was kinda getting that scary, " I wanna go home" feeling. Anyway the apt went really well. The two doctors kind of work in a team. One came in first and pretty much recapped everything from my records from the time the lump was found. Seemed like he knew it all from memory already. He then proceeded to freeze my nose and used a camera up my nose and down to see the cancer on the back of my tongue. It's basically right above the vocal cords. I am such a baby I had to hold Kevin's hand for that. lol. So after he was done we watched it on the video screen and he showed us the cancer and where it is.  He then told us what he thought they would do for me, then said he went and got his partner, Dr. Eric Moore who is the head ENT. He is the one on the you tube video I will post. He is also a super personable guy. They really just look you in the eye and talk to you at your level. So we watched the video again, and he went over what the first doc said. They would remove the tumor from the back of my tongue, which he said looks like it is all growing on the outside of my tongue, which is great news, not growing into the muscle, at least from what he can see. He said it's the size of a golf ball, which honestly, I don't know how that is possible, how can I not feel that?? Anyway, they would also do a neck dissection on my lymph nodes on the right side of my neck. Said they'd remove about 40 nodes!! eek. Said, levels 1,2,3, and 4. 

He said if when they go in it is only that one lymph node that is cancerous, then I'm done after surgery! This is what we need to pray for now. That there is no other lymph nodes involved in the cancer. He will still remove 40 of them, but if only once is cancerous then I need no radiation afterwards. If there is more cancer, then I will need radiation, probably 6 weeks of it, after I heal from the surgery. I think he said like 4 weeks later? So please pray that it's only that one node involved!! 

He gave me more positive news, that he doesn't think I will need a trach tube after surgery, that was one of the things my doc in Waukesha said I might need, so that made me tear up. Then he said I may not even need a feeding tube! I was shocked. I said, "really?" with the tears, he said, "maybe, but I think you will be able to swallow". That took some of my fears away. He was positive minded. If I do end up with a feeding tube, Kevin said he thinks he said I'd have it for 10 days till I come back for follow up. (so yes, I have to come back to Rochester for one follow up in 10 days). So all in all, it was a good appointment. Some of my fears were taking away. He said my recovery will be alot like the one I've been going through the past two weeks, only I will be more sore because of the neck surgery too. But a real sore throat for a few weeks again. I will be in the hospital for around 3 days. He said it just like he does in the video, 2.3 days if everything goes well. I guess the drain tube coming from my lymph node surgery determines how soon I can leave the hospital.  He sounded positive about the surgery and said it's 85% cure rate, and after a year goes to 90 something percent! So the plan right now is to find out what time surgery is on Thursday and try to figure out when we will get a hotel close to mayo for Kevin and the kids. My sister and my dad will be making the trip up to help Kevin out with the kids for the 3 or 4 days I'm in the hospital. It's going to be rough having kids in a hotel , but I know between the three of them they will handle the kids.  We have to meet with the anesthesiologist tomorrow, which I am glad about because I had such a bad reaction to the anesthesia last time, hopefully they can do something different this time so I don't get so sick. So that's the plan! We have a free day today, but it is raining, so if the kids and I can talk Kevin into it, maybe we will go to the Mall of America since we are only about 20 min from it here in Chanhassen.   I'm sure we'll make the most of the one free day we have here to enjoy ourselves.  Kevin and I feel so very blessed during this time for our families that are supporting us through this, letting us stay at their house, people driving 5 hours to help us out, staying at our house with our dogs, (and even sleeping with them!) and all the prayers and little texts and face book notes I get from people saying they are praying and thinking of us. God has sure provided us with lots of support and love and it means so much to us during this time.  Our church has been right here with us through this, being our advocate and support system, prayers and hugs and tears and meals, and I hear someone is even cleaning my house when I am gone. God is good. He is doing everything to support us that we could ask for, I can see him everywhere I turn in all the faces of these people who are loving on us right now. Thank you Lord Jesus.

Well this is getting pretty long so I should probably close for now. Praise God for lots of positive news at the apt yesterday. Pray for the surgery to go well without complications, for the doctors to do their job well and God to guide their hands,  for me not to get so sick this time, just for everything to go well, and for there only to be that one lymph node involved!! Pray for Kevin and my sister and dad and the kids, that their time goes fast and it's not too hard at the hotel for them. God is able. He hears your prayers.

Thank you everyone for your love and support and prayers, we can't express how much it means to our family during this stinky time!!

Love you!!

Oh, I almost forgot. Yesterday morning I got a devotional with this verse ~ Psalm 119:67-68

Before I was afflicted I went astray,

but now I obey your word.

You are good, and what you do is good,

teach me your decrees.

I liked that because it teaches that being afflicted sometimes is for good. Of course we don't think so at the time. But God knows that it will grow us and make us more like him. I don't want to go through any of this, but it has already changed Kevin and I so much, taught us so much. God knows what he is doing.

:)

More morning thoughts...

I was just thinking how I was in such a "low" mood the past week, then especially after I got the news about radiation and chemo, then yesterday God brought some hope back in my life with different options of surgery. There has been lots of time of feeling despair, feeling sorry for our family for going through this and what we have to come but last night I was thinking more about how much God has taught us in just this short month.

He has really taught us what the church is supposed to be, and possibly what we weren't doing in our own lives as part of God's church. He has shown love through the people at our church, not just a "I'll pray for you" but genuine concern and love and help. He has taught us the meaning of really helping people and taking on other people's problems when they are in need so in the future when someone is in need we will know what is expected of us, Kevin and I will be different people because of this.

He has also brought Kevin and I closer, and gave me more love and appreciation for my husband. He's given me more love for my kids. I didn't think that was possible, but it is. I love them more then I did before. I hug them more often and longer, tell them I love them more often, look at them differently. Doubts I had about homeschooling are gone, I know that home is where they belong and I am to be their teacher. 

He's showed me how easy it is for us to take the simple gifts he gives us for granted, like swallowing for instance. Something none of us think much about, until we can't do it. We overlook so many blessings each and everyday, now I'm learning to look for all the blessings instead of over looking them.

So if your feeling down for any reason, start looking for all the blessings in your life and enjoy them. Thank God for them because they could be gone tomorrow. 

Well, I have to take Jake to school now, as he has missed the bus so my quiet time is officially over. Have a good day everyone!

God confirms

It's 6am the only time their is peace and quiet and time to think straight in this house! Good time to get some thoughts down.

Yesterday was a pretty emotional day. For some reason I was feeling sick to my stomach a lot yesterday, not sure if it's nerves or too much pain medicine with not enough food, who knows. Hopefully today will be a better day.

I was busy yesterday trying to make appointments at Waukesha memorial for consults with their oncologists, and called Stillwaters cancer support to get an appointment there. Kevin was home trying to get some work done.

Yesterday he seemed real stressed about the idea of going to mayo next week for consults. Trying to decide how we do this, do we take the kids? Leave them here with someone? Drive there and home in the same day? ( 9 hours in the car?)  Or do I go with my friend Mary? Lot's of decisions to make.  Don't get me wrong, Kevin wants the best care for me, and I know he will do anything it takes, no matter where we have to go, he's just overwhelmed, as am I.  

Last night I received a call from my ENT surgeon who took my tonsils out. He informed me that surgery is an option for me also. This was big news to me because that is not what the radiation oncologist told me. she basically said that surgery wasn't an option because in the tongue area it's too invasive, can disfigure your face, etc, etc.  He said, she's very knowledgeable in radiation but doesn't know the latest surgeries available.

What he told me was that he can do something called transoral laser surgery. He said my tumor is small enough to do this surgery. He would also have to do a 2nd surgery on the lymph nodes in my neck to remove them. He says this has the same cure rate as having chemo and radiation.  The recovery for the surgery on the tongue would  be worse then what I am going through now. He said that part of the tongue is what pushes your food down, so I will have real trouble swallowing for a few weeks, so I might need a feeding tube for a few weeks. Sounds scary but does sound better then 7 weeks of chemo and radiation.

I got some hope back last night that there was other options out there for me.

A week ago I would have said I don't want any more surgeries! Because this one has been simply awful to recover from. But after hearing that I need chemo and radiation for 7 weeks, this actually sounded like good news. Strange isn't it? 

The neat this is how God works in this.  I have a sweet friend Mary, who has been through cancer a few times herself, and her husband had it,  and speaking with her last night, I could tell that God has really put it on Mary's heart to get me to mayo clinic. She explained why I need to go there, offered to go there with me, or follow us, whatever we need to get me there next week. It became very obvious to me that God was speaking through Mary, go to mayo.

I was talking to my brother in law through text last night about the entire situation, and told him that the surgeon called and told us that surgery was an option. He said ~ I think you should go to mayo for a 2nd opinion.  That was confirmation number two for me that God wants me to go to mayo.

Last night Kevin and I prayed together. Asking God for direction in this, where he wants us to be, to speak to us directly or through people, but to give us confirmation what we need to do.

This morning I got up and had an email from my Pastor saying he still thinks we need to go to mayo clinic. There's confirmation number three. God you have been heard. We WILL go to mayo clinic next week. Now it's just to figure out details!

I love how he is so involved in our lives like this. I love it when I am actually looking for his answers and know it's him speaking through others. He's got something in the works here and he wants me at mayo for a second opinion. So that's what we will do.

Hopefully we'll figure it all out and have peace about it very soon.

I am still standing on the fact that God is the great physician and he is able to heal this body of mine. Praying for miracles. :)  

This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us—whatever we ask—we know that we have what we asked of him.

1 John 5:14-15

Radiation Oncology appt.

I am sorry I have not been on a lot to update. I sure have been in a funk after this surgery. Tomorrow will be a full 7 days since surgery and my throat hasn't healed a bit. At least it doesn't feel like it. I still need the narcotic pain meds to ease my pain, which I HATE.  They make me feel drunk. I don't know how anyone can take this type of medication for fun. 

Today we met with the radiation oncologist at Aurora. I am not sure this is the treatment that I am going to have for sure, we are most likely going to Mayo clinic in Minnesota next Monday for a 2nd opinion.

But as of today, what she said was, in this area, (the tongue) they don't do surgery, because it could cause too much disfiguration to the face, (mayo clinic has a special robotic arm that does tongue surgery) so she said, 7 weeks of radiation and chemotherapy.  Radiation is five days a week for the 7 weeks, not sure how much chemo I will have yet.  She said that the radiation, because it's on my neck and face area is going to make my mouth and throat very sore. Said I will get sores in my mouth and it will be hard to swallow. Sounds alot like the last 6 days that I have been living on water and broth, should be great to do that for 7 to 14 weeks.  She informed me I will not be able to drive myself to my appointments  because I will be on narcotics for the pain in my mouth and throat. Just great. My Pastor Tommy was with us at the apt and when she said that I just looked at him. He said don't worry, the church will work it all out.  I just can't imagine needing someone to care for my kids and myself for this long?? Kevin asked, after the 7 weeks is over, will she be fine? She said, no. It takes another 6 to 7 weeks to recover from it all.  

All I could think was, are you kidding me?? How am I going to survive this? My friend Sarah said, "You will know what the term "survivor" really means when you are done". I'm sure she's right. Obviously I have no choice but to do this and kill this cancer! I have to live!  But I am not looking forward to it one bit.

I think I am going through the "why me" , "poor me"  "this sucks" stage.  I just have to get past this.

A little while ago my sister was cleaning off our kitchen counter and I picked up Jake's papers from church on Sunday. His memory verse for the week is ~

1 Corinthians 16:13- Watch, stand fast in the faith, be brave, be strong.

Ironic that I picked that sheet up to read it today? I doubt it.  His other sheet says, " Instead of becoming discouraged we should trust in God and let him give us the courage we need".  THIS is what I need to pray on. Trust in my God. I know he's faithful. I know he loves me, and I know he wouldn't allow this if I couldn't handle it. He lives in me, and I am going to have to use his strength to get me through this!

There's more to Jake's sheet. At the bottom it says this ~

As Romans 8:31 says, " If God is for us, who is against us?" And indeed as 2 Timothy 1:7 says, "for God has not given us a spirit of fear, but of power!  Stand firm then, take courage, and trust in the Lord. He will give you the strength to be the hero he has called you to be!

It was no coincidence I picked up those papers to read them today, when I'm feeling like I can't go through this God says, here, read this! You can do this. Lord Jesus give me the belief in this, that I CAN do this. That I WILL make it through these coming weeks.   

I'd much rather pray , can you please just heal me? Can you do a miracle on me as you did to Adam at church and just heal this and make it go away so my family and I don't have to go through all this!  I know that's wimpy. I don't want to be wimpy, but in all honesty, that's how I am feeling today. 

I have the support to get me through this, God has given me many wonderful family and friends that are going to get our family through this, and I am just going to have to look for all the small blessings along the way.

How many 39 year old women have daddies that say they will go to china with you if that's what it takes for you to get better? Or husbands that just quit going to work to take care of the family? Or Sisters that come over and clean your house and feed your kids, or stay in the hospital with you when your sick and scared? Or brothers that give you patio furniture to be able to enjoy my beautiful back yard? Or sweet friends that call every single day to see how I am doing and offer anything I need? A pastor that goes with you to oncology appointments to be your advocate? God has blessed me with much. I guess I can dwell on what sucks or dwell on the blessings he pours out daily. I better opt for the blessings.  My sister reminded me today that I need to take this ONE DAY AT A TIME. She's so right. I shouldn't look 14 weeks ahead, but 1 day. Today I will survive and do what I need to do. Today. That's it.

I covet all your prayers. God hears them, and I feel them. Love you all.