Friday, October 29, 2010

RAI, Scans, and Isolation...My Week...

An Update...

Monday I went down for my first "test dose" as they call it of Radioactive Iodine. It was an interesting experience as they put me in a lead lined room, and rolled in a cart with my medicine on it. I was given gloves, then had to administer the medicine to myself. I was able to go home Monday night.

Tuesday, we headed back to MD Anderson and I did a full body scan. For 36 minutes I went through the scan with my eyes closed, praying, reciting scripture, singing songs in my head, and focusing on things that are "true, and honorable, and right, and pure, and lovely, and admirable. Things that are excellent and worthy or praise." I went through all the things I am so thankful for, which is so much. I came out with a sense of peace and slept fairly well Tuesday night.

Tuesday night I also had a more truthful conversation with my kids. Gavin just hasn't been himself and I was fearful that he had something really scary going on in his head. And I think I was right. As I told them I was sick and would have to be away for awhile he started asking a lot of questions. And with each question answered, he seemed to be a little more relieved. I just kept telling them after all this, I would be better. I would get to play with them again, and read books, and have my energy back. Gavin took it well. Hadley just kept asking, "Why you have a boo-boo on your neck?" And kept saying, "When it is better you snuggle me?" Ellie broke out in complete hysterics. She didn't seem scared about my health, more sad that I wasn't going to be home for awhile and that I couldn't tell them how long. Frank and I were told anywhere from 7-10 days...or so we thought....

Wednesday morning Frank and I went to meet with my Endocrinologist to go over my body scan. When the nurse took me back they had to re-do my blood pressure because I was nervous and it was high along with my heart rate. But once I saw the doctor I was relieved to hear it hadn't spread anywhere and I would be doing a low dose of RAI (Radioactive Iodine). She said it was still in my neck. But I was told a few weeks earlier to expect a little speckles in there. Frank and I were breathing sighs of relief and were thinking that with the dose I was getting, I would be home in three days. I had asked her how many days and she said to talk to Nuclear Medicine about it when I went there and we were to go there now. So we left the office, upbeat and happy. I called my family and was really just so joyful and thankful. So we got a few prescriptions filled and walked over to the Mays Building across the street to meet with Nuclear Medicine and get dose of RAI. (Which was a big feat considering I am's another building across the street from the main MD Anderson building..but my news..gave me strength.)

After signing my life away that I understand the risks, I was put in a room and a cart wheeled in again. I put gloves on and got the glass jar out of the lead container and had to administer the medication to myself. This time a much higher dose than Monday. They said I would be in complete isolation for about two hours. About 3.5 hours later they came back in and said, "So we are thinking around November 27th you can be with your family again since you have small kids." I am sure I gave him a confused look as I said, "You mean October?" He said, "No, November." I asked him why, and he proceeded to tell me that I have a "significant" amount of tissue left in my neck, "kind of A lot" and that it wasn't just speckles. The reason for the low dose was because my scan showed Tuesday that my body uptakes the radiation well. It has nothing to do with the dose, the isolation time has everything to do with how much tissue is left. This is where Frank and I were confused. If it were speckles, the radiation would eat the speckles and my body would then get rid of it. But because there is more of a mass, it will attack it but then slowly get rid of it. I asked him if we could get Frank out of the waiting room to go over it, as my head is and was complete mush. So we walked out and Frank is smiling after talking to friends and family telling them I'd probably be home for Halloween. He sees my tears, suddenly looks confused, and is wondering what is wrong. I went back there so happy when he last saw me. We were high fiving.
The doctor went over everything with us and said just to be cautious, these were the dates to go by in their professional opinion. Basically, it is what it is and they printed off the paper with my regulations and rules and handed them over to us.

I went in for a second scan Thursday, yesterday. It pretty much outputted the same dates. I am allowed to be around adults all I want. But children 7 and under, not freely until November 25. I can go to the grocery store, mall, movies, walk around like a normal person, just can't be loving on my kids.

However, starting November 6th (Gavin's birthday), I can spend 6 minutes of loving on each of them a day. Yes, you read that right, 6 minutes. And I can spend an hour within a meter of them but no closer. Now, how are we going to explain that?? I can see you, but you can't come near me. No family dinners, no books, no games, homework, etc. It sucks. No other way to explain it. Gavin and Ellie may "kind of get it" but it won't be easy. And how in the world will I ever explain that to my two year old? We are still trying to figure out how we are going to do this. I definitely want to get my 6 minutes in with them a day that they are allowing me. But it is going to be hard to only have that amount of time with them. Especially after being away from them for so long an then just popping in for six minutes a day.
So to say I have been emotional would be an understatement, as I miss my babies.

The LONGEST I HAVE EVER been away from my kids is 3 days. I have been on trips with Frank, and Girlfriends. But it is always 3 nights, 4 days.

But as I told Frank after getting the Isolation news, we still need to focus on the positive, "It didn't spread." And I am SO incredibly thankful for that. Because we could be dealing with something much scarier than time away. So that was definitely an answered prayer!

In the meantime I am at my parents, who are taking very good care of me. I haven't had too many side effects from the RAI. My throat is a little sore, and I am exhausted from being hypo, and a little nauseous on and off. But I am thankful I am able to be with my parents and that they live so close. And it has been nice spending quality time with them that I haven't gotten to do in awhile. I'm back in the same house I was born in. My mom is making me my lovely low iodine meals, and my parents have been giving me lots of encouragement and tissues when needed for tears.

I have been on the phone with the kiddos and talking to them, and they sound good. My Mother in law has pretty much taken my place and I don't know what we would do without her either right now. The kids are loving getting spoiled on and are feeling loved. And they have moved into my bed. They are loving that they get to sleep with Daddy every night. Tonight they are doing "tent city" with him, so they are stoked about that too. Hmmm....maybe they won't be too excited when I come home...

The first thing Gavin asked Frank yesterday was, "When is Mommy coming home?" He told him his birthday and he let out a big, "YES!!" They were all pretty excited about that. They just don't know the 6 minute rule yet and I'm not quite sure how that will be taken.

Tomorrow (Saturday) after 12:30 I get to quit my Low Iodine diet. And Sunday I get to start synthroid to start breathing some life back into me. I am praying that this time goes by quickly. Praying that this treatment kills it all and that I won't have to have another surgery, or repeat this treatment, and we can be done with this thyroid cancer business for good.

Thank you for all your prayers. And for the continuous outpouring of love that I continue to feel. For those of you who contributed to the "Spring is Coming.." Book....I got it yesterday. It was beyond thoughtful and I was very surprised and overwhelmed with the love you all have shown me. My mom and I both cried (and laughed) as we read all your letters. It is something I will cherish for the rest of my life.

These last few months I am not sure I have ever felt so loved. So thank you!!! Spring is coming!!! Heck, Thanksgiving is coming!! :) Oh what a glorious day that will be!!

Sunday, October 24, 2010

My Scare Journal

(Here is my online Journal I kept for weeks. I was unsure to post it as I was a crazy woman and not really wanting to share my crazy self...but then after months of thinking about it, I decided I wanted to have it for me to look back on. To see how far I have come. In moments when I was at my weakest...I am now in a strong place. This is being posted on a date that makes it sequential to my cancer story. However, as I post this online entry it is really a year later past my diagnosis. I am so much better now. Almost back to my normal self.)

Saturday, August 14, 2010

Was sitting at my computer after a fun long Saturday, and felt pressure in my neck. Randomly had my hand on my neck and felt a rather large, round, hard lump. Called Frank in and told him to feel which he said, "I don't need to feel it, I can see it." I immediately got teary eyed, started googling neck lumps and called my neighbor to come look at it. Google showed me everything from cancer, to cysts, to enlarged lymph nodes. The thing I noticed with my lump was that when I swallowed, the lump moved up and down. It seemed to be attached to something. Of course I go into panic mode, but try not to worry. It's amazing all the symptoms I start to think about now that I feel the lump. I've been tired, restless, and loosing hair. I keep blaming it on the kids being home all summer and us being busy. But maybe it's this lump...and maybe it's on my thyroid.

Monday, August 16, 2010

I made a doctors appointment and took the first available which happened to be in the afternoon. I told my doctor I thought I may have a cyst on my thyroid and he said, "Every woman thinks they have thyroid problems." Told him I've been tired, loosing hair, and I found a lump. Once he felt the lump he took me more seriously. He pretty much ruled out a lymph node, said not to scare me but he was labeling it a mass and said he felt it was probably benign. Said if I were a 65 year old smoker sitting in front of him he may feel differently. But I am a healthy, young woman and he thought it would all turn out to be fine. Said he didn't think it was on my thyroid, but that the ultrasound would tell us for sure. He also did a bunch of blood work to check my thyroid levels and other things.

Wednesday, August 18, 2010

I went and had the ultrasound done at our local hospital. Frank came with me. I pretty much had been a wreck and was just wanting to know what was going on in my body. My thoughts had taken me places I really didn't want to believe would be possible.
The lady called me back pretty quickly and did my thyroid ultrasound. She did one side and then, moved to the other side where the mass was. As she did this side she asked me to look away from the screen. Then as she took pictures of it she asks me point blank, as the ultrasound is on my mass, about my cancer history. I immediately start freaking out, and ask her, "why, do you think it's cancer?" She said "I just want the radiologist to have ALL of your medical information." Well that didn't give me a warm and fuzzy feeling. I left the hospital and pretty much lost it. It was a Wednesday night and I had an already planned girls night so I met the girls for Pizza and watched Eat, Pray, Love. I totally hated the movie. But maybe it was just because my frame of mind. And I haven't told any of them. So I was trying to be my usual self. But that was the longest movie I have ever sat through in my entire life.

Friday, August 20, 2010
Ellie's 5th birthday. I was hoping and praying to get good news on her birthday. I didn't want bad news, as I wanted Ellie to have an amazing day....and well...I REALLY didn't want bad news period. Turns out they never called at all. Looks like I will be waiting the weekend before I get the ultrasound results which I am praying are good. I think Ellie had a great birthday and I did my best to put on a show and not be worried at all.

Tuesday, August 24, 2010

I got a call from my doctor telling me that he still thinks it is benign, but I really need to go have a fine needle biopsy done JUST to make sure. Said it looked like a colloid cyst on my thyroid and that these things are usually benign. But just to make sure I needed to go in for a biopsy. So he said he would try and make it for the next day. He said my blood work came back great. My thyroid levels were all in check and my white blood cells were a little elevated but nothing to be worried about. I waited and waited for his call with the appointment, but never got a call to tell me when my appointment would be.

Wednesday, August 25, 2010

I have pretty much been worrying. Really scared to do the biopsy but just ready to get it done. I called my doctors office and their office was struck by lightening so the paper work never got done. Lovely. Their computer system is all messed up. They will have to call me back.

Thursday, August 26, 2010

The nurse calls me back, apologizes and says she is going to call the hospital and get me the first available appointment. A few minutes later she calls back and says the earliest the hospital can get me in is September 2nd. I am so upset. He had told me the next day as in two days ago. Needless to say all I can do is wait as that is the best the hospital can do. Another week of waiting... Praying, praying, praying...and trying to be good and normal for everyone sake. I really feel bad because I really have been a nervous wreck. I know the kids can feel it. They tell me, "Mommy I hope you feel better," which makes me feel so bad. I try hard to hide it but they know something is going on. Then tonight a friend who has NO IDEA what is going on emails me this, "Tonight at bed, Lily, prayed that God would watch over Gavin, Ellie, Hadley, and their parents. :)" If that is not a "God Thing" I don't know what is. Her email brought me to tears. She has NO idea how much that prayer meant to me as I still haven't told hardly anyone, including her, what is going on.

Saturday, August 28, 2010

I pretty much have been worrying myself sick the last two days. I am feeling dizzy and nauseous. I can't concentrate on anything. My memory is horrible. I just don't feel good at all. Besides being an emotional wreck I am wondering if something else is terribly wrong with me. Frank encouraged me to call and go to the Saturday clinic at my doctors office. Frank came with me as I wasn't even sure I could drive. I had a complete meltdown with the sweet PA. She says the mind is powerful and that I need to try and stay busy, and calm down. Stress makes our bodies brains shut down. I realized I was making myself literally go crazy. She was really sweet and said she would see what she could do about moving up my biopsy. She apologized for it taking so long. She felt REALLY bad that this has been going on for so long and said that is not normal for it to take this long. She gave me some antibiotics as I had a drip drip and she thought I had a possible sinus infection and something to help me with anxiety until the biopsy and results are in. It pretty much just makes me tired and she told me not to drive on it. So I guess I will just be taking it at night.

Thursday, September 2, 2010

Never got in early, but starting to feel a little better. The day has finally come. Frank came and picked me up and we went to the hospital to get my biopsy done. Frank got to come in the room pre-op and they showed us the mass on the screen. It was a big circle with a bunch of little circles in it. They showed us all the things my colloid cyst was pushing against. My arteries, esophagus, etc. Told me it is very important not to move or swallow or talk during the procedure while the needles are in my neck. As soon as Frank left it began. They started with a shot to numb the area. Then with ultrasound guidance he put the first needle in the mass and sucked as much fluid as he could from it. Then the second needle went in and as it went in he pushed back and forth many times. The needle was attached to a gun like thing and he kept going back and forth with the needle as he tried to get parts of the mass. He did this with the next five needles as well. When it was done I was so relieved. the procedure itself was not as bad as I had thought it would be. But when I asked the radiologist what he thought, he said, "Only the results will tell us." I was hoping for a little more reassurance than that. He also mentioned because of the holiday weekend, not to expect the results until Tuesday or Wednesday.

Wednesday, September 8, 2010
I had to wait the entire Labor Day holiday weekend. But after dropping the girls off at school, and leaving Target today, I noticed I had an email on my phone. I pulled it up and it said, "biopsy results." I immediately pulled over into the mall parking lot and opened up my results. I just started bawling. I read that the results were inconclusive. My doctor still said he thought it was benign but that he recommended I see a surgeon, who I knew all too well, for a second opinion and excision. This surgeon did my mom's breast cancer surgery, my mother in laws breast cancer surgery, and my grandfathers melanoma surgery years ago. I knew his name all too well. And when I saw I was being referred to him I had a complete meltdown in my car. I called Frank and asked him to call Dr. Hubbards office for me to schedule my appointment ASAP. I called my mom and she could barely understand me. At that moment, I was thinking the worst.
It took me awhile to calm down, but I did. Frank came home, my sister came over, and my sweet neighbor met me at home. They kept saying, it still may not be cancer, they just don't know. I am lucky that we do personally know the doctor I was referred to. I was raised with his kids, and my sister in law is really good friends with his step daughter. We had just gone to Jimmy Buffet with him and his wife a few weeks ago. So I have an appointment with him after hours tomorrow. In the meantime I had sent my pathology report to two friends. One who's husband is a pathologist and one who's husband is an ENT (Ears, Nose, Throat) doctor. The pathologist told me to go to MD Anderson for a second opinion that he still thought there was a great chance it was benign and would hate for me to loose half my thyroid and it turn out to be nothing. But when I talked to the ENT tonight, he flat out told me he thought I had cancer. There were some markers there. And one in particular, nuclear grooves...which he had never seen in a benign mass. He kept talking and then I had to stop him and I said, "I'm sorry...did you just say you think I have cancer??" Yes, indeed he did. He was really sweet and offered lots of advice and told me what he thought the correct protocol and treatment should be to handle it. But I am not going to lie, I pretty much heard nothing else he said. It was a rough night. The first night Frank had a break down, and we pretty much just hugged each other and boo-hood. I did anyway. I was shocked to hear he thought I had cancer when my doctor seemed so certain he still felt it was benign.

Thursday, September 9, 2010

I met with the surgeon I was referred to tonight. He was very comforting as I knew he would be. He really is an amazing doctor and man. He went over the biopsy results with Frank and I. He showed us anatomy charts, explained how he would take out half my thyroid, and what the risks were. He really recommended this procedure because he said it was the only way to know for sure. And if it wasn't cancer, I could keep the other half of my thyroid and it would take over. He said God gave us enough thyroid that I could loose half and still not have to be on meds the rest of my life. As I was bawling, he stopped and got me a tissue and said, "Do we need to take a break?" I said "No I am fine" and he laughed and said, "Yes, I can clearly see that." He is such a sweet man. He really took his time with us. Said if we wanted a second opinion we could try for one, but that he felt the pathologist who looked over it was a good one, was top in his class and had other colleagues review my tissue samples, and he thought the outcome would be the same. He told me, "If God said you have to have cancer the first you would want to pick is Basal Cell skin cancer which you have already had." He then said, "And if God said you need to have one more cancer Lacey, the second you would want to pick is this one." He did make us feel better. He told us to think about it and call him if we wanted to schedule the surgery or if we had any questions at all.

As much as we love him and trust him, I really want a second opinion as the thought of taking half my thyroid, if it isn't cancer, is not sitting well with me. Not after I've seen what my dad has been through with his thyroid issues. But then again, how would I know for sure that it is not cancer if I don't take it out. We just think a second opinion couldn't hurt, and one of the best cancer treatment centers is basically in our backyards. So Frank made a call and we are starting the referral process with MD Anderson.

September 10, 2010

I spent the morning on the phone with MD Anderson and was given contact numbers and papers to fill out. I was also given a list of things they needed to get the referral process moved along. I wasted no time and went and got all my medical records, hippa forms, EVERYTHING they needed..and faxed them right over before noon. I was quick to get an email saying they had received all the information. This place doesn't mess around!

A friend emailed me today. One that I don't really email back in forth with that often. But as I opened her email, I replied and we went back and forth a few times and then I just felt compelled to tell her what is going on. She and her sister are both women who I think are really devoted Christians and so I replied back again and told them both what was going on. I am not sure why when many of my closest friends don't even know. But I did. Their responses were just what I needed to hear. I think I knew they would be responses I needed to hear. They were full of biblical scriptures and encouragement. I don't think the random email she first sent me was a coincidence. I think God knew that her and her sister had words that I needed to hear, to help me refocus my anxiety and worry. Another, "God Thing."

September 13, 2010

MD Anderson called tonight when I was at Parent information night for Gavin. Frank gave them the information they need and they say we should hear back in 2-3 days. I am now in the system and my case was now being sent to the doctors to review and they will decide if I can be a patient there or not. It has been almost a month since I found the lump. The unknown is miserable. I am trying to hold it together, but today for some reason, was exceptionally hard. I cried on and off pretty much all day. I think I am loosing my mind. The kids were extra emotional today and reluctant to go to school, and I pretty much just blamed myself and the stress that they are feeling. Even though we haven't told them anything, they know something is going on. Daddy has been home more. I've been laying around a lot more. And even when I try to hide my emotional episodes, I know they can still see it in my eyes. This is affecting my kids. And it kills me.

Thursday, September 16, 2010

Got a call from MD Anderson tonight and I have been accepted as a patient. I was given the name of my new doctor, Dr. Hessel and was told she has already requested another fine needle biopsy done at MD Anderson. She also has already requested the tissue samples from my last biopsy at the Woodlands Hospital. My appointment isn't until Monday, September 27th, but they think there may be a cancellation for this Monday, the 20th. She will call me tomorrow to let me know. Although I have hardly told anyone about what has been going on the last month, I sent out a mass text to my family and the few friends who do know. Seems like every day I end of telling one more person. But still even some of my closest friends do not know. I hope they won't be too upset when I do tell them. I just don't want to worry anyone, unless there is something to worry about. Although I would LOVE all the prayers in the world....part of me thinks if everyone knows and they see me, it will be awkward. I don't want to make anyone feel uncomfortable. And if someone happens to ask, "How are you feeling?" There is a 50/50 chance I will have a complete meltdown. You just never know. So for the meantime I have told very few friends and family. Praying that I get the cancellation appointment on Monday and for good results!!

Friday, September 17, 2010

My friend who emailed me last week, her and her sister (Sarah and Rachel) have been sending me bible verses and words of encouragement all week. Another "God" moment happened today. I must say I feel they are happening a lot lately. I was thumbing through my bible. I pretty much just fanned it and said....STOP. I stopped in Joshua. And at the top of the page it was Joshua 1:9, "I command you- be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go." I was just amazed that out of all the pages I could have stopped on that was the page as I was pretty certain it was the verse my friend had sent me four days ago. So I came onto my computer and checked her email. Sure enough, it wasn't the exact same verse. Hers came from Deut. 31:6 and it said, "Be strong and of good courage, do not fear nor be afraid of them; for the Lord your God, He is the One who goes with you. He will not leave you nor forsake you." As I looked back in my bible in Joshua I noticed there was a side note. As I looked to the bottom it said, Deut. 31:6 I love those "God" moments. He obviously wanted me to know that verse. And I was reminded of it again today. I love when things like that happen. I am starting to realize that when you slow down and seek God and answers, he reveals himself to you. I can't help but wonder if he is always trying to reveal himself and I am just too busy to see it.

Just got a call at 5:15 and MD Anderson was able to get me in on Monday. Hallelujah!! We should have some answers soon. My next fine needle biopsy is set for Wednesday the 22nd, but she said it is possible that they may get that done Monday as well. Here we go....

Sunday, September 19, 2010

Tomorrow is the big day where I will get to meet my new doctor and hopefully get some answers about this thing growing on my thyroid. I actually had a really good weekend. We kept busy. Had birthday parties and then tonight an "End of Chemo" party for my friends four year old little boy. This little boy was diagnosed with leukemia the day I found out that Hadley and her twin were not going to make it. (Or so they thought). Three years of chemo and tonight his family and friends gathered around to celebrate the end as they gave him his last chemo in front of all of us. I had chills as I watched. What a strong, courageous and brave little boy. I am so happy for their sweet family. And can't even begin to imagine the emotions they are feeling thinking back at the last three years. From the moment they found out, through all the treatments, surgeries, and hospital stays. I can not imagine the overwhelming emotion that they must be experiencing. But I am so thankful they are here and done. He is done, and tomorrow I will walk into the hospital where he has been in and out of for three years.

I told another friend about what has been going on last Friday. The one who's daughter prayed for us a few weeks back. Anyway, they are old friends of our, one of the first few couple friends Frank and I made as a married couple. Conn and Ashley. They were in our first small group that we joined when we were first married. Well, tonight Conn called and asked if he could come over to pray for me. Frank and I stood in the kitchen with him holding hands and he said the sweetest prayer for me. Even though I was crying and snotting with no hand free to wipe my nose, it really meant a lot to us. It was just really touching and I am feeling good about the people I have praying for me that do know. I am so blessed with great friends.

Monday, September 20, 2010

Wow is about the best way to describe MD Anderson. I was so impressed with their system. I arrived at 10:30 and was given an itenerary of my day of who I needed to meet with, at what time, and where. We moved from place to place until 4pm with pretty much no down time in between. Frank and I were thoroughly impressed. And they had valet parking to boot!

Everyone was extreemly friendly and I especially like my new doctor, Dr. Hessel. She is the Department head of neck and surgery and had two interns with her as she came in and spoke with me. She said she doesn't usually think surgery is the first thing to jump to even though she is a surgeon. But given the size of the mass on my thyroid and the nature of it's growth, she felt it is best to have half my thyroid removed. During the operation they will remove it and send it to pathology. If it comes back cancer she will then remove the left side of my thyroid that also has a small growth on it. If it comes back benign, she will keep my other half and sew me up. Given that I am only 32 years old she said with a mass that size I don't want to have to keep coming back in and watching it and it will probably continue to grow. And it is pushing against many things in my neck, one being my corotid artery. So, taking it out just seems to be the best option regardless if it is benign or cancer. I am going back to MD Anderson on Wednesday and will have a head and neck MRI and also an ultrasound to look at my lymphnodes more closely in my neck. If they see anything suspicious they will biopsy them Wednesday. In the meantime they have recieved my tissue from my first biopsy and MDA's pathologists are going to be looking over them to see what they see. There are two types of cancer I *could* have. Papillary or Follicular. My first biopsy showed some signs of either, although it also could be benign. My doctor said about a 50/50 chance either way.
Wednesday, I will also be meeting another new doctor I will have at MD Anderson, an Endocrinologist. They will be working with me post surgery to get my thyroid levels in check so I can hopefully feel normal and back to my normal self. This is what scares me. My dad had hyperthyroid and they killed his thyroid completely off and he has really never felt the same. I just hope if they do take all of my thyroid, I will be able to get it regulated to feel my old self again.

So as of now, I have my appointment Wednesday and then will go back for my surgery on October 1st. I think I did pretty well today. Frank said he was shocking suprised at how well I took it all so I guess that was good. But I was ready for our car to come down so I could get in it and let out a good cry. I think I was holding it in while we were there. So I am praying Wednesdays test show nothing suspicious....and praying that on October 1st, I will have a 3cm benign mass taken from me and I will be back to my old self in no time. Oh please dear God, please say that is your plan!!! I am hopeful, trying to rely on God and know it is in His hands and His plan not mine, and trying to stay positive.

Wednesday, September 22, 2010

Spent the entire day at MDA again today. Checked in at 9:30 and got our car from valet at 4:15 and had hardly any down time in between. I started with my lymph node test. They literally did an ultrasound on every lymph node in my neck one by one. I have had one swollen lymph node that doesn't hurt since finding the lump. I have been a little worried about it. She spent a lot of time on it and when she finished she left the room to get the radiologist. They then came in and flipped on the light and said, "You are done, you can get dressed, nothing looks supsicious that you don't already know about." My lymph nodes looked clear. I really looked up to the ceiling and let out a "thank you God!" and wanted to skip and do cartwheels back to the waiting room where Frank was. But I did contain myself. But on our way up there this morning I was feeling lots of nervous energy running through me and after that test it all melted away.
Being down there really is incredible for many reasons. One, the way that hospital works and operates just baffles my mind. And how smoothly it all goes from appointment to appointment, elevator to elevator and floor to floor. Secondly, all the people that work there are so nice. SO NICE. You know every now and then you meet a Doctor that you REALLY love and can't say enough about?? I feel like that is how it is with every doctor or nurse I meet with there. And thirdly, the other incredible in not a good way, is how many people have cancer. A hospital that only deals with cancer. So almost every patient you run into has cancer or thinks they could. It is PACKED. Another reason we are so impressed with how smoothly it runs. In the waiting rooms we meet people, and hear their stories and it just breaks my heart. Really makes you thankful for living a realatively healthy life. I may have cancer...but I am hopeful that if I will be taken care of rather quickly. Some of these people are and have been fighting for their lives for a long time. This disease is just WAY TOO COMMON.

So after my good news and ultrasound frank and I went and met with Anesthesiology. I am special because of my heart issues. So I had to meet with the actual Anesthesiologist instead of just a nurse. He personally called my electrophisiologist and will talk to him before the surgery just incase my heart has an episode while I'm in surgery. Which I think is doubtful, but better to be safe than sorry. He also encouraged me to go have my heart procedure taken care of after we get this whole neck/thyroid business taken care of. Found out my deductible ends/starts in August. So maybe in a few months after I am passed all this and have taken a breather I will go in and get it done. And then hopefully I will be REALLY done.

These last few weeks have really made me thankful for the days that I do feel healthy. The days that I surrender control and realize I can do nothing to make me better but trust God and His plan. I can not wait to have more days of feeling normal. Not worrying, not being dizzy, not being tired. I am so ready to live a healthy life again and I want to take FULL advantage of living healthy.

So, what's next? Meeting with an endocrinologist and team next Wednesday. They will be the ones who will help me regulate my thyroid functions regardless if I have half or all of it. Then Friday I will have surgery. Given my age, I will probably be one of the last surgeries that day. She does infants and elderly first which is understandable. I am just thankful to be there and in good hands.

Friday, September 24, 2010

My sister had a doctors appointment a few weeks ago and they told her she needed a partial hysterectomy. Today was the day of her surgery. I have been praying for her daily and knew when all was said and done she would be well. And praise God she is. I just got back from the hospital from seeing her and she is saying she is amazed at how much better she feels already and the surgery just got done a few hours ago.
As I was talking with her in pre-op this afternoon I couldn't help but think about my surgery next week. Yes, a week from today I will be sitting in a hospital bed, nervous like her, and full of anxiety in anticipation of my surgery. And when I went and saw her tonight post-op, I was looking around a Joyful, thankful room and couldn't help but think, I hope my room is that joyful when I get out. I hope my doctor will have good news to deliver. As I looked at her belly and her stitches I realized, I will look a little different as I will have a drain hanging out of my neck. I am thrilled, thankful, and so happy her surgery went well. I am a little jealous hers is over with to be quite honest. When I left, I kissed her and told her I was so happy that it is done and went well and she told me, "Next week you will get good news too." But as I got in the car to leave the hospital I couldn't help but break down in tears anxious in anticipation of my surgery next week, downtown, at MD Anderson. I came home, clung to my clinging cross and cried and prayed that I will have a joyful room, a benign result, and that a peace would overcome me.
The last few days I have felt really good. And I haven't even taken any of my crazy girl meds that they gave me for anxiety. My outlook has been good. I have felt peace. I guess today seeing my sister laying in a hospital bed, scared of surgery, just made it all more real. I know this is just a rollercoaster and it's how it goes. Seven weeks tomorrow since I found my mass and I still don't know what it is. I think the waiting and not knowing is the hard part. One more week.... I can do it.... ONE. MORE. WEEK.

September 28, 2010

Not so fast, bad apple. Got a call from my doctor who is doing my surgery last night and she said that some emergency surgeries have come up. She said that she is booked for 14-20 hours depending on how some of the surgeries go, and she has no break in between. I will be one of the last surgeries. And I am the only patient that is local. The others are either driving into town or flying here to have their surgery done. So, I had a choice. I could either keep my surgery or I could move it to next Wednesday, October 6th. I at first said, I am really anxious and just want to get it over with. But the more I thought about it, I decided to move it. I would really rather her cut into my neck when she is refreshed instead of over-exherted. She was really appreciative and said I would have the FIRST surgery on Wednesday morning. So, Wednesday is the day. ONE MORE WEEK from TOMORROW. I've been waiting this long....five more days won't hurt me.

September 29, 2010

Went back to MDA today for an appointment with my new Endocrinologist, Dr. Sellin. She was nice. We really didn't learn anything we didn't know. She really wants to wait to go into detail with my treatment until we know what I am dealing with. But if it is cancer she did confirm that I will go into complete hypothyroid for a few weeks as all my cells leave and then they will start "thyroid chemo" for a few days and then I will be regulated. So if it is cancer I will basically feel like Poop for a good few weeks before feeling good again. She said she is hopeful we can still keep half of my thyroid and that nodules in the neck used to be considered beauty marks. LOL.
As soon as the exam room door opened for me to leave, a young girl in a MDA coat was waiting for me and asked if she could have a few moments of my time. I qualify for a study they are doing to see how lifestyle and genetics play a role in thyroid cancer and thyroid nodules. Of course I agreed to the study so I sat down with her and answered a bunch of questions and then the last thing I had to do was a blood drawl. She said they would just tack it onto my pre-op surgery blood work. Little did she know I already had that done so I would just be going to the lab for her. She took me into a room to try and get the blood herself but I think I freaked her out with my phobia of needles and I did ask her, "You do this a lot right?" I guess I just assumed a nurse from the lab would do it. She ended up feeling around for a vein and then called in reinforcements for help. They got the stick the first time and got the five tubes of blood they needed fairly easy. I hope I can help in some way.
Frank and I stopped in the Heights on our way home for some lunch.

It is time I step into MD Anderson, will be SURGERY day. Yahoo. I am SO READY to get this over with. One Week from TODAY. Is it sad to say that, I can hardly wait??

Saturday, October 2, 2010

The day started out great. Football, birthday party, flooring store to pick out some new stuff for the house...and then I got a call from my sister, Shannon. She was crying and when I asked what was wrong she said she was on her way to the ER because she was running fever and had stomach pains. So we headed home and I headed to the ER to meet her. She checked in about 7pm and around 1:30am they finally came in and told us that she has a blood clot in a vein from the surgery and that she would be admitted to the hospital for antibiotics and blood thinners. From 7-1:30ish we actually had some laughs though. I think they may have even been a bit annoyed and suprised at how much laughter was coming from our room. And I am sure they had some stories to go home and tell their friends about. One in particular when I seriously stood over my sister and did lamaze type breathing to tried and get her to mimic me as she was breathing so fast I thought she was going to pass out when getting blood taken and an IV put in. Yes I was doing the breathing and coaching her "in.....hold it...and out..." LOL. The guy taking her blood seriously was trying not to laugh. We then found ourselves laughing at stories we were swapping with eachother. Embarrassing moments with her co-workers, and our kids. And I laughed more than once as I realized how similar and alike we really are. She asked the blood draw nurse if he "does this often." I just last week asked the research girl at MDA the same thing as when she said I would need to give blood, i was shocked it would be her, and not the regular MDA lab nurses. My sister tried really hard to talk the nurse out of giving her a catscan. As soon as she left I told her what a good job she did trying. And with all my thyroid stuff, even though her catscan was only done on her abdomen, she asked for a thyroid guard because she saw on Dr. Oz that you should get one when given a catscan. But I am assuming he meant a full body scan or head/neck scan. The girls doing the catscan were surely laughing inside as they told her no one has ever asked for one when doing an abdominal scan, even when she explained what was going on with me. Her thyroid was going no where NEAR the catscan machine. We got a good laugh out of that too. It wasn't too entirely bad until they came in and told us the results. Then the mood changed. Was a long night. But she is going to be fine. Thankfully she went in, and they caught it. Ten days of blood thinners and she should be good.

Monday, October 11, 2010

Well, I guess it's not a "scare journal" anymore. I was diagnosed with papillary thyroid cancer last week. To say my world is sad is an understatement. I am trying to hold it all together and in but I am sad and scared.

Frank and I left for the hospital at 4:15am and I was actually not all that nervous. We got there and there really wasn't any down time. Before I knew It was kissing Frank telling him goodbye. I REALLY thought when I would see him again my fears would be gone and I'd just have some recovering to do. Boy was I wrong.

Frank, my parents, and my friends Greg and Stacy were waiting in the waiting area when time kept ticking. My surgery was taking longer than expected and I think they were all getting nervous. Finally my doctor came out and told them the news, "Lacey did great, she is recovering, and going to be just fine. But the news you really wanted to know, yes it was cancer. I had to take her entire thyroid, and three funny looking lymphnodes, but I got it all. She is cured." As everyone sat there in shock and sadness I was in recovery being told the same news.

I remember waking up and asking the nurse, "Do you take all of my thyroid? Or just half?" And he looked at me and said, "We took it all, but we got it all. You are cancer free." Oh how my world just shook. Next thing I remember is the sweet little pre-op nurse who had helped me before came and found me. She had been diagnosed with breast cancer a few years before and had three kids. And she told me, I was going to be good, and strong and fight for my kids. And before I know it, I'll be strong like she is now.

And then Frank came in. Poor guy thought he was coming to break the news to me, but he knew immediately when seeing me that I had already been told. We hugged and I just kept telling him "I'm sorry...I'm sorry." I am just so sad. So sad for myself, and sad for the others who are sad for me. My mom and dad came in and then I was wheeled into my room. I had a drain coming out of my neck. It was less than pleasant. This whole thing just seemed so surreal. They gave me a shot of morphine and it made me really sick. Frank held the bucket while I got sick right next to his dinner. So much for that.

We came home the next day. Frank met the kids outside before bringing them in to see me when they got home from school. He told them I had a boo-boo and that I was going to be tired for awhile until I get better. Ellie got home from school first and she took it pretty well. She layed in bed with me and rubbed my hair and just kept looking at my bandages and drain. Gavin on the other hand had a harder time with it. Even though Frank prepared him when he saw me he covered both of his eyes. He said he couldn't look at me. It made me sad to see him so hurt. Hadley was the most interested in the drain and bandage and asked a zillion times why I had a boo-boo. Why I had a drain. And she kept sneaking in my room to climb in bed with me. And very carefully would snuggle up closely and would kiss me and tell me, "I hope you feel better."

Friday morning we went back down to MDA. I got there and thought I would be able to walk to the doctors office, but just stepping out of the car I was weak. The little lady helping me insisted I have a wheel chair and I didn't fight her on it. I got in and Frank pushed me to the clinic where I was to get my drain out. The nurse came out and looked at my output sheet and said he needed a doctors approval because I didn't meet nursing approval for removal. So we waited at the Dr. had said less than 30mm of fluid and I could get it out. And I had 25. IT was approved and he quickly got it out. He asked what my pain tolerance was before taking it out. And I really was just thinking, pretty much after what I have just gone through, I don't think this is going to hurt. And really it was just one sting with the first pull and then it was out.

Saturday, my neck started getting really itchy. And a bunch of bumps where forming around the steri strips. Turns out I am probably allergic to them. After a night of trying not to itch it, I emailed a picture to my doctor who wrote me back yesterday telling me to soak the steri-strips off and just leave the wound open and clean. I am sure my scar won't be as nice, but I am hoping the itching and irratation goes away soon.

Today is Monday. I am still really dizzy and tired. I don't know when I will feel like my old self. But I am guessing in a few weeks. They are starving off my thyroid right now. It is completely gone and I have been given nothing to replace it. They are putting my body in complete hypothyroid. Apparently it takes a few weeks for all the thyroid to leave the body. I go again Wednesday and meet with the endocrin team. They will discuss what my post op treatment is further. I am hopeful that all my treatment will be over in a few weeks. I just hope the old me will be back.

32 with cancer is a scary thing. I just really hope I am not fearful of it coming back for the rest of my life. I need to learn to not be a worrier. That is going to be really hard. Really hard.

Thursday, October 14, 2010

Today and yesterday I was back at MDA. Yesterday to meet with the Endocrinologist who will be administering the dosage amount of my chemo pill. The nurse first walked in and said, "we're thinking you can come back the week of Thanksgiving for treatment." I immediately burst into tears. Not only is it Thanksgiving, and my kids have a week off of school and I won't be able to be around them, but that is when I thought I would be done with treatment and on the other side getting regulated. The PA had told me in the hospital that I would do treatment in three weeks from my surgery date. So, I was shocked. Apparently the PA was confused, but my doctor, Dr. Sellin sat down and said we can do blood tests every week and as soon as my levels are appropriate we can start the treatment. In the meantime I have to go on a fabulous Iodine free diet. That way the remaining thyroid cells in my body are nice and hungry and ready to take up the iodine which will kill them. I asked how many lymph nodes were affected and she said all four that were taken were cancer. :( I immediately broke into tears again and asked, "What is my prognosis?" And she said, "I see you seeing your grandchildren grow up if your kids decide they want kids." That was just what I needed to hear. A prayer that I have always prayed. That I would be fortunate enough to see my kids get married and have babies. It is just going to be a few rough weeks/months and then I should be back to my normal everyday life. That is the hope anyway.

Today I went to meet with Dr. Hessel my surgeon. I just LOVE her. She is amazing. She said the same thing, the lymph nodes don't change my prognosis. And even if the cancer has spread somewhere else the chemo pill is the only thing effective for this type of cancer. So unless there is a giant tumor somewhere that shows up on my scan, I should get a mega dose pill and be done. That is the hope anyway. If there is something larger, which they are NOT expecting, then another surgery may be required followed by the RAI (radio active iodine) treatment. But that is worst, worst, worst case scenario. She said with my age alone, I am in a good spot with a great prognosis. I am still really emotional. I think the word CANCER is just really hard to digest. And metastisising to other areas is scary.

Every morning is really hard, but the afternoons are better. I pretty much cry every morning. I open my eyes and just wish this were a really bad dream. But then I focus on the positives, and this being God's plan, and I feel better. It's just hard to always keep that focus.

I am already feeling hypothyroid. I am REALLY tired. I know I just had surgery, but I am dragging by the end of the day. And she said the emotions are just going to get worse as my body gets more and more hypo. I have decided to start the diet Sunday. I go this Sunday and every Sunday until I am ready to give blood to check my levels. Then I will go in for 3-4 days of treatment. And depending on the dose may have to stay away from my kids for 7-10 days. :(

I also found out today that my parathyroids are still hardly working. But she is not worried at all. With the extra calcium and vitamin D I am taking my levels are okay. She thinks they just need time to heal because she knows they are in there. So hopefully they will start coming back to life as the swelling goes down.

The blisters around my incision are healing. I have been using hydrocortizone cream and taking benedryl to help. She offered steriods today but she told me I may get more emotional, so I kindly declined.

I am hoping and praying for a good few weeks with the kiddos before my treatment. Hopeful that they can kill all the thyroid cells and get my Thyroglobin to zero. Then I will go every 6 months for check ups.

The biggest concern with the lymph nodes is reaccurance. But even then it typically just comes back in the glands in the neck and I'd do another surgery and repeat RAI if that were to happen. Hoping that will never be the case and we can kill it all first time. Actually I really hope it is already all gone. And I will just have to do the little dose of RAI.

Oh how I can't wait for the day where my mind is not cluttered with cancer thoughts. A day where I am energized and feeling good. I can not wait for the days to REALLY LIVE my life again. How precious our health is. How precious our life is. And how much I have realized I can NEVER take ONE SINGLE DAY for granted. I hope after all this is said and done, I will be able to keep that mentality and really understand how lucky we are to be healthy and feel good.

Before and After

5 minutes before surgery...before I know that my body has cancer in it...Last picture before my diagnosis.....

Woken up and heard the news....

But still haven't lost my spunk....My brother asked for a picture of me...hahaha...I look HOT!

Saturday, October 23, 2010

Coming to Terms With It...

On August 14th as I was sitting at my computer and I randomly had my hand on my neck and noticed a bump above my collar bone. I immediately called Frank and told him to feel it which he replied, "I do not need to feel it, I can see it." I went to the Doctor and he referred me to the local hospital for some testing. After and ultrasound, I was referred for a biopsy. I had six fine needle biopsies on a thyroid nodule and it came back inconclusive. My doctor assured me it was probably nothing but referred me to my mom and mother in laws cancer surgeon here. My heart dropped. We went and met with him and although we love this man we decided to start the referral process with MD Anderson. We felt a second opinion would be good and if there was even a possibility it was cancer. MDA seems to be renowned as one of the greatest treatment centers around. And It's basically in my backyard. I was lucky to get in fairly quickly and after many appointments was scheduled for surgery.

On October 6th, I woke up from surgery asking the nurse, "Did you take all of my thyroid or just half." You see I knew if it was just half that it was benign. He said, "We took it all. But we got ALL of the cancer out." Meanwhile my family and friends were being told the news by my doctor in the waiting area. I had papillary thyroid cancer. I remember Frank coming and hugging me and we both just cried. He thought he was coming to break the news but it was obvious upon seeing me, I had already been told. After almost two months of wondering and hoping for the best, my worries and fears had come true.

I came home and it wasn't too bad of a recovery physically besides the allergic reaction that I had to the steri strips that were on my neck and the lovely drain. But after removing the drain and the rash that is still slowly going away, recovery hasn't been too bad. Until this week anyway. I am not on any thyroid replacement hormones yet so my energy is zapped as I go into complete hypothyroid. I have been doing weekly blood drawls on Sundays down there and have been on a lovely iodine free diet (No dairy, soy, iodized salt, sea products etc.). This past Monday night I got a call from my endocrinologist oncologist who said my levels were rising rapidly and she thought we could go for treatment this week.

So I go again tomorrow for a bunch of pre-treatment tests and to double check and make sure my levels are a go. And assuming they are, Monday I will go for my first dose of Radioactive Iodine Treatment (RAI). Tuesday I will have a full body scan to see if it is anywhere else in my body and Wednesday I will meet with my doctor to go over the scan and see if a second dose is needed. Most likely it will be as it had gone to 4 of my lymph nodes as well that were taken out during surgery. And there will probably be some speckles of it in my neck but we are hoping no where else. Depending on the dose, I will be isolated from kids 7 and under for 7-10 days if I have to do the second treatment.

As many of you know, I am a worrier by nature. My biggest sin. I think it was no coincidence that the first bible verse I ever memorized was Phil 4:6, "Don't worry about anything; instead, pray about everything. Tell God what you need and thank him for all He has done." Although I told very few people until the few days before my surgery, the few that did know and now know have been sending me great verses and words of encouragement. And my list of bible verses that I mediate on daily are growing. And most days they give me an enormous amount of peace.

I have been keeping an online journal and have thought many times to share it on here, I just really never knew or had the right words to say to admit and introduce it. Accepting the fact that I have cancer has been a hard one to swallow.

On a bright note, my doctors have been amazing. And my prognosis is good. I am so impressed with MD Anderson and how it is run. And I feel like I am in REALLY good hands. My surgeon was amazing, really the many multiple doctors that I have seen, countless nurses I have come across, I just can't say enough about them. I don't just have one doctor, I have a team of them. Even the little Valet lady who remembers me every day when I get out of the car who tells me, "Every day will get better." I think the place is incredibly run with brilliant doctors. Although, I am hoping after this week, I will be done visiting so frequently. As Frank and I often say, the place is AMAZING, we just wish we didn't know first hand how great of a place it is.

I am hopeful that after this first round of treatment I will be put on synthroid to start regulating me and getting me out of hypothyroid. I am so exhausted right now. I try to get out of bed, but it really is getting harder and harder. I was in bed until 4 today when I finally mustered the energy to go out and take the kids to the pumpkin patch with Frank. Something I really wanted to do as I know I will probably miss Halloween next weekend. And I want to spend all the time that I feel well with them that I can right now.

I still haven't found the right words to say to my kids. They know I went to the doctor and go a lot and that I had a boo-boo in my neck. I have told them that I am going to be really tired for awhile but then I will get better. But we have not mentioned the "C" word at all.

Someday maybe I will put more of the details of this experience and the roller coaster of the last two months. But right now, I just figured a brief synopsis was good. I thank you all who have been giving me endless support, endless help, and encouragement. I have been overwhelmed with the love I have felt from so many of you. All the emails, texts, cards, food, flowers, cookies, baskets, and especially my mother in law and mom for helping with the kiddos. And Traci for forcing me out of the house and driving me places so I can feel normal even if just for an hour or so. I love you all and will never forget how you have all helped me get through this time.

And of course my husband, who has been BEYOND amazing. I definitely don't know how I would make it through this without you. And I still don't know how you do all that you do. But I thank you for doing it. For dealing with all my emotions and for taking AMAZING care of me, the kids, and working at night and any other chance you get to keep our home going. I love you.

Like my brother told me, something good has got to come from this. I already know one thing...when I do feel good again...I do NOT want to take ONE SINGLE DAY for granted. Our health is precious. And wasting a day that I feel good, would just be that- A WASTE.

Please pray for me and our family this week. Pray that I do well with the treatment and that my scans are clean. And pray for my kiddos (and me) if I have to be away from them. I know this is just a blip in the road and I will be back to my old self soon. Hopefully sooner rather than later!!

So, now it's out there. It has been a little weird blogging the last few months when really what has been going on has been so much bigger. But denial is one of the ways I deal with things...until I can't deny them anymore.

Please keep us all in your prayers this week!!