Lung Cancer-Carcinoid

I have been learning SOOO much the past several months. The interesting thing is that my incrediable body has been fighting junk inside of me for a VERY long time and I never knew it. When I had endometriosis inside of me attacking my uterus and ovaries and intestines I felt it! It HURT! When I had Paget's, I felt it! IT ITCHED! When I had MRSA, I felt it! Again, it HURT! But now pictures of inside of me say I have a carcinoid in my lung. I don't feel it. I think somehow the doctors got me switched with someone else. I have been doing some reading and some symptoms that I have had for years, like IBS, can actually be caused by the carcinoid. Being tired all the time can be caused by the carcinoid. WHO KNEW? Well, now I do. So today I met with the lung surgeon. I know this is what he does every day, but to me it is all new. I don't know what questions to ask. But what I do ask, he is happy to answer. Most of it is, "We will have to wait and see when we get inside of you." I have tried to add a picture of lungs and where the carcinoid is and for some reason I just can't seem to get the picture to attach. So we have 3 lobes on the right side and two lobes on the left. On my right side, the middle lobe, in the airway INTO the middle lobe is my carcinoid. It is completely covering the hole. How I am getting air into that lobe is a mystery. So the doctor will go in through my side, spread my ribs and take out my middle lobe and HOPEFULLY will be able to connect my lower lobe to the upper lobe so I only loose one lobe. Lucky for me, the middle lobe only produces about 10% of my air so I really should not even miss it.(So says the doctor..) We have to ask my insurance (Medi-Cal) if I can have the surgery and where may I have it. Then we will decide WHEN to have it. (hurry up and wait) One out of eight women will get breast cancer in their life. One in a million women will get carcinoid syndrome. I am one out of eight and one out of a million. Have you ever been on the roller coaster at the Disney "California" park? You sit in the seat with the harness holding you into the seat and you are put at the start of the ride and have a count down..10,9,8,7,6,5,4,3,2,1 and you take off SO fast. Your insides all squeeze together, your tummy gets TIGHT and you get tossed all over. If you keep yourself tight, you really get beat up. If you somehow relax your middle, it is a really fun ride. I figured out about the 4th time on it that if I don't tense up and just relax, the ride is SOOOO fun and I truly enjoy it. (Before it was fun but I felt banged up.) I say this because so many times during this past year, I have felt myself "Tense" up with all that is happening to me. I can get myself really worked up, or I can "Relax" and go with the ride. I am not trying to say that this is fun in any way, but I am finding that I am not freaking out. I trust my Heavenly Father. He is allowing me to go through this process for a reason. I don't know if I will be helping someone in the future with the same problems, or if I need to learn from this experience to help myself with my own problems. Heavenly Father has given each of us skills, or talents, or gifts (what ever you want to call them). It is up to us to find them. I firmly believe in the skills, talents, gifts that my surgeons have been given and have worked to develop. Now I ask that Heavenly Father guide their hands while using these skills, talents, gifts, to help me in my journey.

Gifts from Heaven

I don't have any updates yet, I have a doctor's appointment on Wednesday so I know I will have something then to share... Today my heart is full of gratitude! The love that has been outpouring to me is just beyond words. I have my close friends that have given me gifts to help with my healing..a soft special pillow for my arm, my door decorated with fun pink things, a wonderful CD with uplifting music,really fun cards, a perfect hospital gown (ITS CAMO!!!!)a pretty bracelet, not to mention the food! YUM! But I am just amazed at the prayers on my behalf. I have had my name on the prayer rolls of more than 5 temples (Even in Japan! Thank you Linda!), people from work have prayed for me, people in my ward have prayed for me, and then today...I got a BEAUTIFUL short but so touching, letter from a Methodist church group in Texas signed by over 20 people that don't know me that are praying for me. I know prayers work! I feel them holding me up! I am so THANK-FULL for all the love! I am BLESSED!

September 3rd

Sometimes it feels like this is all old news now and there are better things to talk about. Then I find out someone JUST found out about what I am going through and want to ask all kinds of questions...I am fine talking about it but this is really weird since I don't usually talk that much about myself. I normally don't seek the spot light. It really is ok to talk about other things..ummm...the problem is that not much else is going on since I am busy with doctor appointments or test..blah! So, PLEASE feel free to talk about what is happening in your world! Ok, well...So...a few weeks ago I got a phone call from the clinic I went to when I was diagnosed. They want me to come in for a follow up appointment. That is really weird since I thought I had been handed off to the surgery center. Not much the clinic can do for me. Ok, I will come in and do a follow up. It is on a Saturday which is crazy, but ok. So I drive DOWN (it takes about 20-25 minutes depending on traffic) to the clinic. This is the conversation that I have with the girl at the front desk. Girl: Can I help you? Me: Hi, I have a 11:15 appointment with ________. Girl:___________ isn't in today. Me: Then why do I have an appointment? Girl:Well, _________ has several appointments set up for today but we cancelled them. Me:I didn't get a call to tell me that the appointment was cancelled. Girl:We don't call you, we just clear them out of the computer. At this point I just say Wow,Thanks...and walk out. So..Their office calls me for an appointment that I don't need but then doesn't let me know they really don't want me to come in..Makes sense to me! In one way, it made me giggle..because I know ________ did not set up the appointments. The left hand doesn't know what the right hand is doing. Ok, so today I had my first appointment with Oncology. I am learning all kinds of terminology. There are so many big medical words to describe something as simple as cancer and how to take care of it. After much discussion, everything that I learned today.. 1. The decision Jeff and I made about having a double mastectomy was a really smart decision. I am HER2 receptive, which means to me that if I had left the other breast, the chances of the cancer coming back were pretty good and I would have had to have treatment to lessen my chances. Because I removed both, the chances are gone and no treatment is needed!Blessings! 2. The lung carcinoid is SOOO slow growing and is not evasive, so nothing needs to be done before the surgery to it! Blessings! 3. No other cancer was found! BLESSINGS! I did have to have more blood test done today, but I am on the path to being a pro at it! So next week I meet with the lung doctor and we should have a plan as to how to remove the carcinoid and when..Hurry up and wait... Today was a good day!

August 26

This morning started about 4 omygollyitisstilldarkoutside early. I was awaken by intense pain in my side. Sorry this may be TMI..I think I had a ovarian cyst burst..the pain is so intense. I took heavy drugs but it took a long time for them to kick in. By that time I was in no condition to work. I hate that we are only on the second week of school and I have only been a few times. Between all the doctor appointments and then today not feeling good..UUGG. I had a doctor's appointment this afternoon where I thought I would be going over the test from last week. My appointment was for 1:30 and the doctor finally came in to see me about 3:30. She was surprised to see us. What's up? Jeff and I looked at each other cause we know WE didn't plan this meeting....She gave me a look over and we talked for a few, then I asked how my test looked from last week..she gave them a quick look and said everything looks great. No other cancer was found other than the carcinoid in the lung that we already knew about. WHAT? REALLY? That news was so worth sitting in that room for 2 hours! Amazing! Again I truly believe that prayers work! So now she is handing me off to Pulmanary. This makes me worried since I so much love my doctor. She is beyond words! I tell people that she left her autograph on my chest. And it is beautiful! So now next week I am off to see the Oncologist. That is all that I have on the calendar at this time but I know that it will fill up fast. It is just "Hurry up and Wait" again.

August 21st

One month past surgery. Ta-Da! What a week so far. Monday August 19th: I had to go into the hospital for a CT. This one involved drinking some of the most NASTY liquid I have ever had. I was told it had crystal light lemon in it to cover the taste of the tracer. NASTY, People! Find something else to flavor it with..At least it was cold, and they gave me a straw so I could put the straw to the back of my mouth trying to pass all the taste buds. AND they gave me 90 minutes to get it down. OH, but not all of it. I needed to save the last half an inch to drink right before the test. My sweetheart was with me to help entertain me while chugging. We were able to walk the hospital while doing the chug..must say, that is one of the best places to people watch. After I got the liquid down, I changed into my "daylight gown" and headed in to the testing room. Ok, this is where you know I am not of the medical field when I don't know what to call things...The needle they put in your arm for an IV, yep, they put one of those in my arm and then they shoot some stuff in it and you taste something like a metal taste in your mouth and then you start the test, the table goes in to a tube..too hard to explain everything..then they hook up the tracer to the thing in your arm and now you have the feeling that you are going to wet your pants. True..at least it is a warm feeling. 10 minutes later you are having the needle thing ripped out of your arm, you are free to change back into your clothes, and PLEASE drink lots of water to flush out of your system the stuff we gave you to drink earlier. UUGGG! Today, Wednesday August 21: I headed back to the hospital. I am starting to know my way around that place..I have that needle shoved back into my arm, a bunch of liquid pushed into the needle and there it is again..that metal taste in my mouth. Now comes the metal box. Inside is a syringe with the radio activit tracer and other stuff. It is shoved into the needle thing in my arm..I feel it go up my arm and into my chest..it is cold! Then more of the "metal in my mouth" liquid is shoved in after it. Now at this point the tech says, "Hey girl, you are now HOT!" Like I wasn't before that? I have been having hot flashes all morning... I can go about my day, but I have to be back in 4 hours. SOOOO...I pick up my sweetheart and back to the hospital we go. Now we get to go to a big room with a weird table and mechanical arm that has a weird tube thing on it.. again too hard to explain...I have to lay down and hold really still for about an hour with a big flat thing VERY VERY close to my face and upper body. Good thing I am not closterphobic, but this could very well make me! I had to close my eyes for a bit. The table was very slowly making its way out from this flat thing, as it was taking pictures of the radioactive stuff inside of me. The pictures are a FULL body scan. AND they do a 3-D picture. The tech lets us see what the pictures look like after I am all done..It is way cool! I have to go back tomorrow and do the scan again. I don't get shot up any more, they are looking at what is left inside of me. AND I might have to go back on Friday. I have to drink lots of water to flush this stuff out of me. AGAIN YUCK! I am so tired of Peeing!!!! (Sorry, TMI again..) Ok, so my stitches are healing, my skin is still UBER sensitive. I was given the green light to start wearing my new boobs. They are so...so...I don't even have a word to describe. I do think they look better than my originals. The best part is I can take them off and put them away when I am done for the day. I think I have worn them a bit too much though because I am SOOO sore. I didn't wear them today. I will wear them when I go to work, but then I rush home to hurry and take them off. I know when I am all healed I will be able to wear them longer. I have new thoughts when I think of "Letting myself go" or "Slipping into something more comfortable"...Whole new meaning!

August 15

3 weeks past surgery. Wow. I had an appointment on Tuesday with my surgeon. She is amazing. She called me (herself..not a nurse) to see how I was doing and if I had any questions or concerns. I told her I was still having some problems that I was not sure if it is normal or not after surgery so she had me come in so we could look at it. A few weeks ago when I went in to have my second drain removed, she was not there and another doctor had pulled it. Then when I went in for a check on how it was healing, again she was not there. She was on a work week vacation, if you could call it that. At the check up the doctor at the time had decided that I needed an ultra sound to see if I had fluid built up on my side and that could be why I was having the nerve problems in my arm and side. MY doctor was upset that I was never seen and that I have not heard from any other doctors regarding test or future appointments. SHE got on the computer and found that I do have an appointment this next week and then I am meeting with Oncology the first week in September. SOOOO that is good. She then gave me the green light to go back to my normal activites, just listen to my body. Only lift what I feel comfortable lifting. Don't over do it, rest when tired. OK! Jeff was my witness! She gave me some stretches to do to limber up my arms so I don't loose range of motion. She says I am doing really well for someone who has just had surgery 3 weeks ago. I start back to work tomorrow and next week is the first week of school. Wo! Here it comes! I am still trying to figure out clothes, so this will be an adventure. I am trying to focus on work because thinking about the next adventure in my health is starting to scare me. I have been doing some reading and none of it sounds fun. Thats all I want to talk about it right now because I know that what ever happens, it will be my own adventure!

Two Weeks

Has it really been two weeks since I had surgery? In some ways it is fast, others a bit slow. I feel good, tired, but good. I have sore spots, but if I didn't we would all worry. Yesterday I had a check up from one of my surgeons. She says everything looks good, the pain that I am having down my arm and side might be from fluid build-up. I am waiting for a ultrasound to find out. Hopefully in the next few days I will hear from all the other doctors that want a piece of me... So, the good and the bad that I have learned this past 2 weeks: Lets start with the negitive since I always like to end on a happy note.. 1. Some people have really big hearts and want to let you know they understand what you are going through and share stories about their great-aunts, cousins, 2 doors down neighbor who's dog had cancer..it died..but I know you will make it. Thats hard to listen to...I really need positive right now... 2. I am having a hard time with the clothes in my closet. My skin is UBER sensitive and finding a shirt that I can handle not to mention make it not so notice-able that I am missing something on top, has become quite a challenge. I am trying to embrase the very flat top of me but it is hard when my stomach looks like I am now 7 months prego! (Yes, I know that when you look at me know you will be staring at my mid section..go ahead..I look at it often myself and giggle) 3. I hate holding still. I thought that laying in bed all day or just to sit and veg in my rocking chair would feel so good...NOT 4. I think the hardest part is not healing as fast as I had expected. Well, I really didn't know what to expect, but I know that having the gunk under my arm was not in the plan. OK, now the positive... 1. I LOVE all the support and love that I have been given by SOOOO many people. My name has been put on SEVERAL Temple prayer rolls and all the others that have prayed for me. I feel it every day! I feel so much love that at times it is overwhelming to say the least. 2. I have 5 new "scars" to be proud of. (Please refer back to previous post) I am amazed at how many other STRONG people have "scars" that I did not know about that now share with me! They strenghten my testimony daily. 3. WE have had some amazing dinners! SO yummy and not to mention the COOKIES! Yes! Jeff is a happy man! I am so thankful for all the hands that have prepared with love the food for us! 4. My testimony has grown leaps and bounds! ( I know some people will now think I have gone loony especially those that don't believe in God or Jesus Christ...)The love I have for my husband and the priesthood he holds and the love he has for me has been my anchor. I know my Father in Heaven LOVES me and has a plan for me. The hard part is just going along with it with out asking too many questions. Just GO WITH IT! I will learn so many great things from this adventure. There is a scripture in D&C 24:8. God is talking to Joseph Smith but I have applied it to myself: Be patient in afflictions, for thou shalt have many; but endure them, for, lo, I am with thee, even unto the end of thy days. I know this to be true. With all my being.