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