Medullary Thyroid Cancer & MD Anderson!!!

Last week I wrote a blog post about being back HERE. I talked a little about our move and why we moved. We didn't move because we wanted too. We moved because of my health. When I found out in January 2013 I had Medullary Thyroid Cancer I was with Kaiser an HMO insurance. I am going to say right now Kaiser is a great place for people who are healthy, who do not have weird illnesses. If you have something rare you need to leave Kaiser. I was told this MANY MANY MANY times by people who had Medullary Thyroid Cancer. I didn't get it until I left them. 

My experience with Kaiser was rough! I am not going to name Kaiser doctors in this post. These doctors could be amazing with other things and I don't feel it's fair to blast them. I went to 3 doctors for 4 years that I was either their first patient or they had seen a couple others with MTC. My surgeon and endocrinologist I was their only patient. My oncologist saw less than 5 people. The last year I was with Kaiser I finally stopped seeing my oncologist and only saw my surgeon. My surgeon was AMAZING!!!! If I asked her for a second opinion, consult with MD Anderson and to look into things for me she always did. She seriously was and is the most amazing person to me. I will probably always have a very special place in my heart for her because I feel she saved my life. She found the cancer, removed it and just gave me exceptional care! 

The Kaiser oncologist was great the first year or so I saw him. Then I don't know what happened to him but he became an ass. I watched the show the Resident and after seeing that show I think for him I didn't bring any money, so why keep me around. I also think it bothered him that I knew more about Medullary Thyroid Cancer than he did. I had to learn everything possible because I needed to make sure I was getting the best care. I would ask him questions and he would talk to me like I was stupid. I asked him if certain tests had been run on my tumors. He turned it around treating me like I had no idea what I was talking about, that the blood tests had been run etc. I remember getting very blunt with him. I said NO I asked did you run these tests on my TUMORS not my genetic testing. There is a difference here. This was in November 2016 or so when all this went down. At this point I was starting to realize I needed to leave Kaiser and head to MD Anderson. I also stopped seeing my oncologist and just went to see my surgeon for check ups right around this time. 

In September 2018 I went in for my routine CT Scan. My surgeon had requested the scan along with instructions to use contrast. When I arrived for my scan they weren't prepping me for an IV. I asked are you going to put an IV in for the contrast? The nurse said you don't need that for this test. I said someone needs to look in my file because you always need contrast. Did anyone look at my doctors notes? HELLOOOOO I am no nurse or doctor, but I knew more about MTC than I think anyone at Kaiser. I was sooooo frustrated. 

When my results came back from the Sept 2018 scan it showed my liver legions had grown. Kaiser wanted me to meet with a surgeon to have the spots removed. I told Art I am not going to let Kaiser do anything else when it comes to MTC because they can't even get the contrast right for the scan. I said what if they do surgery and completely mess things up. I only have 1 liver and I can't keep taking these changes. This is when we decided it was time to move. 

I have gone into the detail above because I want people to understand the lack of care I received by not going to a center of excellence for Medullary Thyroid Cancer. Doctors who are not at a center for excellence will tell you oh there aren't doctors that see this rare cancer very often. That is a lie! My doctor at MD Anderson sees over 200 patience with MTC. Currently she is treating 200 patients. She has seen way more than 200 patients over the years. 

I called MD Anderson prior to moving to set up an appointment. My mom had scheduled a trip down to help with the boys. When they booked my appointment it was 2 full days of tests plus I met with my doctor, her staff and a consultation with a surgeon. I had MRI, CT Scans, ultrasounds, and blood work. I would leave the hospital each day and I felt completely exhausted. Between the contrast making me sick and all the testing it was rough. 

It was sooooo nice to meet with people who understood MTC. I would describe my symptoms and they wouldn't blow me off. They would have me go into more detail or let me know that is very common for MTC. With Kaiser doctors would get this deer in the headlights look when I was start in about symptoms or problems I was having. I had more care in 2.5 days at MDA than I had in 6 years with Kaiser. I didn't have to ask about contrast, how they would be running the lab work, if the labs would be changing. Some of the imaging staff was familiar with MTC even! 

I received phone calls from my doctors team explaining the tests, the next steps, checking up on me to see how I was feeling. They don't see a lot of patients that are in their 30's with kids let alone a nursing mother. The nurse practitioner called me numerous times to check on me. Ask how long I pumped and dumped. She said she was taking notes for future patients in my situation, so she could help them based on my experience. It was amazing! They also requested an additional Dotatate scan. It is a newer scan that MDA makes the contrast right at their facilities. It's similar to a PET scan that actually works for MTC patients. PET scans do not work for MTC. 

While I didn't receive the news I wanted that I don't have cancer or things aren't growing....a part of me had hoped we made a mistake by moving because I didn't really have cancer. I had 6 years of blood work showing I did, but still I kind of wanted a miracle. Anyhow they found even more cancer than Kaiser had found. My doctor at MDA says the stuff Kaiser was blowing off is MTC. She said this is very common to see it spreading. At this point they are just going to watch it for 6 months. I will go back for more testing. If things grow we will need to discuss additional steps - biopsies, chemo, surgeries etc. 

In the past 6 years things have changes for the better with MTC.  There is additional genetic testing they do now. Kaiser had no knowledge of this. Thankfully everything came back as sporadic, so it is not genetic. If it was genetic my kids would have to be tested and whatever side of the family it was on would also need to be tested. There would be talk about removing thyroids of the family members that had any signs of a raised calcitonin or CEA. Thankfully this isn't an issue! I was hesitant to have kids if it had been genetic when we found out I had cancer. I just didn't want to spread it to them. I may have taken the chance, but it was something that weighed heavily on my mind while I waited a month for those results to come back. 

I can't recommend MD Anderson enough!!!  Is it expensive to go there? Sure it is! I met my deductible and yearly out of pocket within 1 day of testing. I will budget for this in the coming years. I will know I need to set up the max amount of flex spending money available plus some additional money to help cover my medical costs. We pay a TON of money for insurance each year plus co-pays, deductibles and out of pocket. 

So many people complain about Obama care. There have been some great things with Obama care. The lifetime maximums went away and pre-existing conditions. I would possibly be without insurance at this point in my life because of my pre-existing conditions and I would have for sure met the one million dollar lifetime max. I don't agree with everything they have done with it, but these 2 things alone have been great for people who have major medical issues. 

MD Anderson is an amazing place! If you have cancer my suggestion would be to go to MD Anderson. They know their stuff! I am sure there are other places that might know stuff too, but when it comes to your life go to the best! 

It's Cake Day!

It is hard to believe today is 4 years since my surgery! Two days I relive each year. The day I went in for surgery and the 3 days it took to birth a baby. lol Surgery day is a shorter day for me to relive because 11 hours of it I was asleep. My life changed that day. I say a lot for the better, but reality is it changed for the worse too. A new things happened for me that I didn't experience in the past - anxiety. The unknown with having a cancer. 

Each year I celebrate January 18 with cake. Last year I struggled with the day. I didn't really even acknowledge the day. Last year was really hard dealing with it all. This year I went out to Whole Foods to find a gluten free cake. I took G with me which was probably not a good idea. He was pointing and yelling about all the cakes he wanted me to buy. I finally found him a box of crackers, so I could pick out something. I found some chocolate cake bites. 

Now listen I didn't even eat cake or ice cream on my birthday last year. Unheard of! Well I am not going to let another year go by where I don't celebrate another year of my life WITH cake! lol

I decided 2017 was going to be a year where we don't live waiting for a health crisis. I am not going to a million doctor appointments. I am not going to stress about test results every few months. I am just going to let cancer become a blip on my radar a couple times a year. 

I am thankful I don't have to wake up at 4:30am tomorrow to head to the hospital. I am thankful I won't wake up at 9:30pm tomorrow in the worst pain of my life. Childbirth didn't even compare to that pain. Maybe because I knew with childbirth I could get drugs that would numb it all AND I would have a sweet baby in the end. I am thankful for right now my cancer is stable. I am thankful my little miracle boy came after all this cancer ruckus! 

This year I am going to eat all the cake bites I bought with my little George, laugh and soak in the minutes of another amazing year with cancer! 

Three Years!

I read a post this morning I put on FB 3 years ago.

"I'm off to start the next chapter of my life...cancer FREE!!!!

I'm looking forward to the BIGGEST class of ice cold water after recovery. This no water thing is for the birds!!!!

My Grandma Fischer would be proud. Woke up, did my hair and make up. Even when she went to work in the field on the farm she looked presentable because you never know who could stop by. lol

Happy Friday!!!!"

This started off my day feeling weird. It's been 3 years since I went in for surgery to get rid of cancer. Only to find out 2 weeks later I won't ever get rid of this cancer. I normally celebrate today. I couldn't really celebrate today.  I think it has been a weird feeling because my numbers aren't as low as I would like them to be. It has been a roller coaster year with ups and downs when it comes to my cancer numbers. Right now they are holding stead. I would rather have them holding steady then climbing. Still it's scary at times.

Three years ago I was sitting in a hospital bed thinking I wouldn't ever be able to move my shoulders again. The pain was horrific. Somehow I forgot the pain of child birth. I can't forget the pain after my cancer surgery.

As I sat on the couch tonight I looked at my house covered in toys. George was dragging his tent around the house as toys were being scattered.  Right now life is good. I was able to spend it with the important people in my life. I didn't celebrate my cancerversy, but I did soak in the sweet moments of just an ordinary life.

8 Months

Top left: 2 days after surgery

Top right: 1 week after surgery

Middle left: around Easter

Bottom left: July

Bottom right: last weekend

 

Yesterday was 8 months since surgery. Looking back at pictures it is amazing to see how much has changed. In July the surgeon was not happy at all with how my scar was healing. She decided to put a steroid shot along the incision to get rid of the raised scar. I still am debating if this was a good decision or not. One of the side effects could be varicose veins, but normally it happens after 2 or 3 steroid shots. Well I don't follow any rules. I got varicose veins after one stinkin shot. The raised area is almost completely gone. The color is slowly fading back into my normal skin color.  I think the surgeon will be very happy with the results since July.

Patience, waiting, limbo land, self-control, endurance, temperance, forbearance, longaniminty - just a few words that describe my journey with cancer. Two of my favorite words are longaniminity and temperance. Longaniminity means patience enduring of hardship, injuries, or offense. Temperance means moderation or self-restraint in action, statement, self control.

Right now we are not sure what is going to happen. In October I will have another CT scan to see what is going on with the numerous spots on my lungs, liver and my enlarge thymus tissue. My blood work has decided it would be fun to do the wave like it is attending a baseball game. It goes up, it goes down then it goes up, but nothing to be overly concerned with at this time. I am considered stable. There are so many factors that can affect the rise and fall of the specific blood tests I have done. I try to get my blood work done around the same time every quarter, eat the same foods, avoid spicy food, and go to the same lab. Changing one of those things can cause the number to increase or decrease.

I have blood work run on a quarterly basis. The week I have to wait for blood work are 5-7 of the longest days of my entire life. I have learned I will not get blood work run right before a holiday because it delays it an additional 2-3 days. This last time I had to wait 10 days. My body goes through so much stress just waiting for the results. I try not to stress over it, but that is MUCH easier said than done.  I need to work on my longaniminity majorly!
 I had hoped all my blood work would go back to normal at this point, so I could have a few decades of not worrying about cancer. Evidentially God still thinks I need to learn some more longaniminity.

 

HCG Diet Update

I started the HCG diet 14 days ago. As of yesterday (day 13) I was down 14.5 pounds. I have finally lost all the weight I gained since surgery. I can't even tell you how fabulous it feels to finally be down to where I started and for my clothes to fit again. My clothes have been fitting, but they were tight. My skirts were tight across my stomach which hiked them up. Those 14 pounds sure make a big difference. Finally one thing is back to normal. The rest of my body is a long ways from getting back to where it use to be, but at least my weight is under control. My goal is to lose another 8 pounds. Hopefully I will be able to do that in the next 7 days. 

Last weekend I went to Costco to buy some new sunglasses. Costco now accepts VSP, so I was able to use my VSP benefits. Why is it as soon as I found a pair and checked out the sales people start bringing out new styles. They had a super cute pair with a bow. Next round I am getting the bow pair. 

In the picture below you can see my scar. I have been putting vitamin E on it each night and rubbing the scar in a circular motion. Around the scar use to be all raised and half of that is gone. The skin is smooth and is fading a little. I have been very diligent with making sure my scar is always covered when I am outside. I have been wearing a scarf 98% of the time. The other 2% I have used my hair to cover my scar when I am outside. I have decided not to cut my hair. I need to keep it long, so it will cover my scar until it fades. 

T-shirt & Cardigan: The Loft

Skirt: NY & CO

Shoes: Sears

Necklace: Etsy

Sunnies: Costco

Nerve Damage

Prior to surgery my surgeon told me I could have problems with my lower lip, tongue, and shoulders because of nerve damage. There were a lot of other risks from nerve damage but the ones listed are what come to mind. I wasn't too concerned with nerve damage. I really thought those would be a rare case. Well turns out I have nerve damage to my left shoulder. 

Right after surgery I was really sore. I went for a massage and that helped my shoulder a little. My left side was horrible. Two weeks after surgery it was AWFUL. I was in tears it hurt so bad. I tried to stretch and it made things worse. I emailed my surgeon and she sent me for physical therapy. I met with the PT and it turns out I had damage to nerve C3 & C4. When the PT was talking about specific nerves I felt REALLY great full she did well in school memorizing the nerves. lol

I have to do stretches at home for 2 weeks and then back to PT. I might have to do PT for awhile. I learned today nerves heal one milometer a day. The PT told me I need to be patient because it could take awhile to heal. The PT was wondering why it took 2 weeks for me to have pain. I was sitting there thinking hmmmm I wonder why. Then the light bulb went off. I had been taking pain pills for 2 weeks. Both of us cracked up laughing. Of course that is why I didn't feel the pain. 

Well the 90 year old woman has to start her PT! Toodles

Cancer Update

My doctors took my case before a tumor board to review. I had a CT scan and 8 nodules were found on my lungs. The doctors didn't feel a PET scan would provide any additional information and the additional radiation wasn't worth it. A lot of times Medullary Thyroid Cancer and where it has spread will not show up on a PET scan. The tumor board agreed with my doctors. My doctors had suggested watching the nodules by doing blood work at 2 month and 6 months post surgery. They also wanted to do a CT scan a few months after my first CT scan to see if the nodules were growing. The tumor board felt that was the best way to handle the nodules. The nodules are so tiny it will be almost impossible to do a biopsy. They also don't feel they will get an accurate result even if they tried to do a biopsy. If my tumor levels in my blood work are going up they will need to do additional scans to see where the cancer is growing. If the nodules grow then I will have to go through chemo.

My doctor feels they were able to clean my neck very well and got rid of all the cancer. She does not feel I need to do any additional treatments. However she is referring me to get a radiation consultation. She just wants me to hear the pros of getting radiation because she told me the cons of getting radiation. There is a chance my cancer could come back in the lymph nods left in my neck, where my thyroid use to be or in my neck muscle. If I was to get radiation it can cause a lot of scar tissue and could cause a lot of problems if I need additional surgery down the road. I am going to the radiation consultation, but I have no plans to get radiation. A lot of information I have read it can cause more harm than good to prolong my life, since all the cancer is gone. At this point there are no benefits to get radiation. 

I have been going through genetic testing to see if my cancer was genetic. Medullary Thyroid Cancer is a genetic cancer and is usually inherited. My surgeon really felt my cancer was sporadic, but we needed to make 100% sure. I think the genetic testing was the most stressful of everything I have been through in the past few months. The doctors said if it came back genetic my parents and brother would have to go through testing to see if they had the gene. All the first cousins on the side of the family that had the gene would have to be tested. Everyone who came back with the gene would need to have their thyroid remove to avoid cancer. It wouldn't be safe to leave their thyroid in or take the risk of waiting to see if cancer developed. Medullary Thyroid Cancer grows way to fast to take the chance.

I spent so much time praying the cancer was sporadic. My heart felt so heavy and burdened for my family. I didn't want my family to go through all the worry and pain. I also felt that if someone had the gene it would be my responsibility to make sure they went through surgery. My dad was trying to tell me he wouldn't get his taken out. I thought I was going to lose my mind. I then just had to take a deep breath and wait for the answers. 

The genetic counselor thought she would have the information by Friday. Friday was the LONGEST day. I sat around waiting all day for her to call me. At 4:40pm my phone rang and she had the results. The first thing she said was I have some good news. I took a deep breath and felt such relief. My cancer was NOT genetic. 

I hung up the phone, sat on the bed and just bawled. My family was safe! Also any future little Post's were also safe! The genetic counselor was able to confirm all my genes were normal and the miscarriages weren't from anything being abnormal.  RELIEF!!!! 

Now normal life resumes and plannings starts back up. Everything felt it was on hold until we had answers.  I also was SUPER happy because I don't have to go through chemo. I will have hair for Lacey's wedding. I can face anything now that I know my family is safe. Now I am praying for a miracle with my lungs. My prayer is that the next CT scan shows no sign of nodules on my lungs. God can wipe out those nodules. 

One Month since Surgery

Well today is officially one month since I had surgery. It is just crazy to me that it has only been a month, but then again it feels more like 6 months. So much has happened in just 4 weeks.

Morning after surgery

Day 2

Day 4

Before and after surgery - geez louiz!

Before surgery and day 4

Day 4 on the left, one week on the top, 2 weeks on the bottom

One month after surgery

One month with Bee Magic on my scar

Here are some facts about the past month:

• 8 visitors in the hospital
• 12 meals delivered to my home
• I didn't drive, clean or cook for a full 2 weeks
• 10 doctor appointments
• 5 ultrasounds
• 1 CT scan
• a minimum of 10 phone calls with doctors
• a zillion emails back and forth with numerous doctors
• hundreds of hours on the couch
• lots of puppy cuddles
• Two trips to the airport to pick up & drop off mom
• a few pills short of becoming a pain drug addict. lol
• one episode of Honey Boo Boo - I am not sure my life will ever be the same. I am traumatized! 
• Started juicing
• reading lots on nutrition
• I have never heard so many tell me they are praying for me in all my life. It has truly been amazing

I am praying/hoping month #2 brings us fabulous news there is no cancer in my lungs and all my levels regulate. Nothing big just 2 simple things. 

Unanswered Prayers

The other day I was laying on the couch thinking of some unanswered prayers I'm thankful stayed unanswered. Have you ever listen to Garth Brooks Unanswered Prayers? It's a great song!

I'm thankful for all the crazy exs that stayed unanswered prayers. God really has blessed me with an amazing husband. We've had our bump in the road just like everyone else. He has taken such great care of me over the past 3 weeks. Stood by my side, been my cheer leader, remained positive through numerous tough doctor appointments, sat by me in the hospital, took care of me after surgery and loved me each step of the way. He takes away the stress of all this cancer.

My normal process after I leave the doctor and get some tough news is I cry on the way home. That's my time to think the worst, get my emotions out, and have a woe is me moment. Art sits by as I have my moment using crying away. Then he reminds me of the what ifs, the positive things, how God is going to get us through this and cancer won't beat me. I go through these emotions before I call my family & friends to give them an update. By the time I make my phone calls I feel positive again.

I made the mistake of not going through my process when my mom was visiting after a rough doctor appointment. I got soooo angry on the way home I yelled at her. Instead of yelling I should have let myself cry. I didn't want my mom to see me cry or not be strong. Instead it backfired on me.

Another unanswered prayer was my job. I had been looking for a new job. A place I interviewed with started dragging their feet in November. I got irritated with why weren't things working out. Why wasn't God answering my prayer? Well thank goodness that prayer wasn't answered. I needed my Cadillac insurance plan. We have only paid $20 for all the doctor appointments, surgery, hospital, prescriptions, lab work etc. Yes, that is right twenty dollars!!! I pay a large amount each month for insurance, but in the long run its paid for itself.  It would have been awful to start a new job & go through cancer. We could have switched to Art insurance, but would have had hefty co-pays.

Those are the 2 major unanswered prayers that come to mind. Some times we get frustrated with the fact we feel God is ignoring us. In reality he knows what is better for us in the long run. I have stepped back lately to look at the bigger picture. 

Psalm 27:14 (KJV)
Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord.

Cuddle Bug

Sammy has been glued to me ever since I came home from the hospital. He spent Thursday-Tuesday with Grandma & Grandpa Post while I was in the hospital. I asked them to bring him home the day after I came home. He came home that day, jumped on my lap and laid beside me for the next 2 weeks. He laid on my lap almost all day long. If he wasn't on my lap he was beside me on the chair or couch. He has been very cuddly and making sure I was ok. Each night he sleeps right beside my legs. If I get up he wakes up, watches where I go, and then goes back to sleep when I do. 

Sammy is not normally glued to me. He is Art's buddy and usually is glued to Art. He wouldn't even sit on Art's lap for the first 2 weeks. If Art called him he would look at him and just stay beside me. He realized I couldn't play hard, so he would play very nicely with me. If he wanted to play rough he would take his toy to Art. I swear this little guy is a person. Sometimes he acts just like a little man instead of a dog. 

I love this picture. He jumped up on my lap, laid his head on my pillow and started snoring. Puppy snores are the best!!!! 

Healing

My neck has been healing very nicely. All the scabs have fallen off and I can now start putting vitamin E on it daily. The doctor told me to put vitamin E on it and massage the incision. I am putting vitamin E on it in the mornings and coconut oil in the evening. 

Below are picture I took over 2 weeks. The first picture was right after I came home from the hospital. I still had my stitches at that point. The 2 little dots are from the drainage tubes. 
The top right hand picture is a week after surgery the day I had my stitches taken out. 
The bottom right hand picture is 2 weeks after surgery. The dots where the drainage tubes had been are almost completely gone. They healed up really quickly. 

The majority of the swelling is gone too. I have a little swelling right under my neck. My jaw, neck and chest are still numb. I am starting to get the feeling back. The nerves are coming back in rare form. I will be sitting on the couch and then I will yell OUCH. As soon as the sharp pain comes it leaves. My chest also burns a lot at night. It is a weird feeling. It's between a burn, tingling, almost like needles poking me. Nothing seems to ease the burning feeling at night. I have tried pain pills, heat, cold, but nothing seems to make the burning feeling stop. 

My mobility in my neck is not back to normal yet. I can turn my neck from side to side. I can't turn it quickly or all the way yet. It can be a little challenging when I am backing out of a parking spot. I try to stretch my neck out each night. I have been able to sleep on my side and on my stomach for short periods of time. 

Surgery & Recovery Overview

I took pictures from the morning I left my house for surgery until a week later. I actually took pictures almost every day. I had said in a previous post I would let myself cry when I saw my scar and I wouldn't cry anymore. I actually didn't cry when I saw my incision. I was actually relieved to see the doctor cut much lower than she originally told me. Originally I was going to be cut in the middle of my neck, instead she cut me around the base of my neck. The incision is not that bad. It is healing very nicely. 

The morning of surgery before I left the house. Yes, I put on all my make up and did my hair. I was going to look good going into surgery. I woke up earlier than normal that day, but I got ready just like any other day minus the jewelry. 

Pre-op was probably my favorite part of course since there was no pain involved with this part. They gave me this gown with places they could insert a tube to blow hot air. The tube attacked to the gown around my thigh, I had a controller for how warm I wanted the air. This machine was used in pre-op and the OR. OMG it was HEAVEN!!! I seriously want one of those machines for at home. I had a fabulous nurse Gloria in pre-op. We joked around the entire hour before surgery. 

The doctor came to visit me and Art in pre-op to go over everything one last time. She had to write YES on my neck before I could go back to OR. I guess she has to mark where they are going to do the surgery or I can't leave pre-op. 

I kept my sense of humor all morning except when I had to kiss Art good bye that was the first time I felt scared. It was more I was scared for him because I knew the next 8-10 hours would be very hard. I had the easiest part, but the worst part was for the family. 

As we walked to the OR I asked the nurse how in the world she could work back there. It was FREEZING! Seriously it was like an ice box. I walked into the OR I said to my doctor "I am walking into this room and I will walk out right?" She said they would give me a break and take me out a little easier. The doctor assured me I would be just fine and recover great because I have the best attitude through the whole process. I met everyone in the OR, talked to them, joked with them, laid on the bed, started to get some drugs. The doctors do a overview of everything by reading patient name,  medical record #, procedure, and other stuff I can't remember anymore. It was honestly surreal to listen to them as I lay there. Even as I laid on the table I couldn't believe I was the one laying there for surgery. 

When I woke up from surgery I was PISSED!!!! Why in the world were they waking me up ALREADY! I had FINALLY started to get some great rest and these people were waking me up. I asked what time is it? They said 7pm in the evening. That was my cue everything was just fine and I didn't need to worry about surgery. If the surgery was shorter than 8-10 hours then I had lymphoma. I went back to sleep. I remember waking up on and off occasionally and the first memory I have is of my doctor sitting across the room from me at a desk. I guess that was while I was in ICU. I remember them taking blood, x-ray, moved me to a room and then BAM I was smacked in the face with PAIN. 

The pain for Friday night was HORRIFIC! Someone brought me a dinner with broth in a bowl with a spoon. Thinking back on this cracks me up. I couldn't even move, but I was suppose to eat broth from a bowl??? It didn't matter how much pain meds they gave me nothing helped. I remember laying in bed that night as I dozed on and off thinking I will never be able to move again. My shoulders, back and neck were SUPER sore. I couldn't move my shoulders at all. The nurse helped put a pillow behind my back. My overnight nurse was simply amazing! Her name was Sarah and she took the best care of me. She would come make sure I wasn't in pain, brought me pain meds when they were due instead of me asking for them, helped me drink some chicken broth. This woman even gave me a sponge bath one day. 

Saturday Art came to the hospital around 9:30am. It was the longest 12 hours without him. Some point on Saturday I realized I had on a different hospital gown. I pulled on my gown and said what a minute...someone saw me NAKED because I am changed. We just started laughing. My day time nurse Belinda came in and was amazing! She helped move me, so I had some relief. I was a little concerned I would get bed sores. lol I kept asking people to help me move. She helped me eat my liquid breakfast and made sure I was comfortable. I was able to get out of bed around lunch time to sit in a chair. I sat up while my friend Cindy visited. One of my first text on Saturday was to Cindy asking her to bring me a hair tie. I couldn't find mine and my hair was making me CRAZY. When she got there I asked her to put my hair up for me. I couldn't move my arms above my shoulders. After about an hour I crawled back into bed and slept. My pastor and his wife came to visit me. They were super sweet during this whole thing. My pastor came to the hospital the morning of surgery and sat with us for a little while. Then he prayed with us prior to surgery. 

Above I am writing in my journal. I listed all my nurses for the first couple days. I couldn't do much for longer than 10-15 minutes without feeling exhausted. I should have wrote a little each day about how I was feeling and things I remembered. I just didn't have the energy to do anything.

My first real meal! It was some type of stew, soup and peas. It wasn't that great, but I ate what I could. I had been living on broth and pudding almost 2 days. 

My evening nurse Roxy was super sweet! She was very attentive and caring. I really liked her!

Sunday morning Belinda is cleaning everything for me in the picture above. You can see the drains at the top and faintly my incision. Different people would come in to check on how I was doing. Every time a new person came in they commented on the fact I was wearing make up. I went one day without make up and that was enough. I needed to get back into the swing of things and I refused to look like I was sicker than I was. Sunday night was the best night of sleep I got in the hospital.

This picture cracks me up because I look higher than a kite!!!! Look at my eyes. LOL

This was shortly after they took out the right side drain. That one hurt like a mother. Cindy was with me all day Monday. She held my hand as I screamed. The doctor said part of it must have been wrapped around up inside my neck and that is why it hurt so bad. When he pulled it out stuff went flying on the bed, doctor face, his arms. lol He walked out of the room I told Cindy I can feel something wet, but I can't feel anything. All of a sudden we see a big clot of stuff that looked like a worm. I yelled OMG don't touch it....get the doctor. I was worried Cindy would be grossed out. Cindy found the doctor washing his face. lol He said part of it might have just been stuck inside. 

The doctor came back about 20-30 minutes later and said my doctor told him to remove the other drain. Oh lord I was scared. Cindy held my hand again as I braced for pain! There wasn't any. The drain just slid right now and it was no big deal. The doctor said that is normally how they should come out. 

Monday night I came home from the hospital. When I got home I was so exhausted. I just sat on the couch and couldn't move. Art ran to the store for pudding. I had been eating pudding with my pain pills and wanted pudding that night. When he came in the house I was just sitting there bawling. I was scared to me home because of the pain, super tired, I didn't like how swollen my neck was. I just felt awful. On and off the entire night I would just start crying. All of the emotions were finally hitting me like a train. I didn't sleep very well on Monday. 

Tuesday was my first full day home. The swelling started to go down a little and my neck was healing. 

Wednesday the swelling went down some more. Wednesday we met with the endocrinologist and went over a lot of information. Each time I would leave the doctor I feel I am on overload. I will meet with her again once the pathology report comes back and we know what the next steps will be. 

I took this picture Friday after my stitches were removed. Each day the swelling goes down more and more. The doctor said it will take a few weeks for it all to go away. 

My neck was so swollen at one point I looked like Fat Bastard from Austin Powers. When I would walk and talk my neck would jiggle. Ugh! The swollen neck has been the worst part for me. I knew I would have some swelling, but not the amount I have had. 

Prior to Saturday I have been able to cut my pain pills down a ton since I came home from the hospital. Some days I experience more pain than other days. Saturday was a really rough pain day. All the other days the pain has felt more like an ache. It would start off like a tooth ache and then spread all the way around my chest. Saturday the pain came on like a shooting sharp pain. In order to sleep the pain meds had to be increased for the night. 

I knew the recovery would be hard. I couldn't have imagined in 100 years how rough it was to wake up from surgery. I had morphine last year when I ended up in the ER and it was amazing. The morphine the first day did NOTHING. Luckily once I was able to get past the first night I was able to tolerate the pain better each day. I had to learn the difference between pain and just being sore.