ALS

What is ALS?



Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment–"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region.
As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.
The body has many kinds of nerves. There are those involved in the process of thinking, memory, and of detecting sensations (such as hot/cold, sharp/dull), and others for vision, hearing, and other bodily functions. The nerves that are affected when you have ALS are the motor neurons that provide voluntary movements and muscle power. Examples of voluntary movements are your making the effort to reach for the phone or step off a curb; these actions are controlled by the muscles in the arms and legs.

The heart and the digestive system are also made of muscle but a different kind, and their movements are not under voluntary control. When your heart beats or a meal is digested, it all happens automatically. Therefore, the heart and digestive system are not involved in ALS. Breathing also may seem to be involuntary. Remember, though, while you cannot stop your heart, you can hold your breath - so be aware that ALS may eventually have an impact on breathing.


12 years ago this September...my dear Father-In-Law died from ALS. It is so hard to watch someone as they struggle with ALS. Watching Glenn as he lost so much weight, as he stuggled just to get out of a chair, even eat or do every day things that in his head, he knew he could do, but his body wouldn't let him.

I watch as people call out each other to do the "Ice Bucket". I love that attention is being brought to this AWFUL disease. I love that money is being brought to a very worth cause. But will dropping a very quick bucket of ice water really show your support? Here is my challange..

I challange you to get a small plastic tub/pool...fill it with ice and water..mostly ice...now sit in it. Cover your body up in the ice water. For every second you can sit in it, donate $1. For one minute, $60. (Then use the water to feed your plants...don't waste it..we are in a drought after all!)
Then, go spend some time with a family living with ALS...

Judgement vs. Responsibility

When I was growing up, to be a "good" member of the church, it was believed that you must be able to sew clothes for all of your 15 children and yourself and matching ties for all the men in your family, out of one bolt of cloth. You should be able to grind your own wheat and make homemade bread not to mention all the jars of food and jams that you canned yourself while keeping your house immaculate. You read your scriptures and go jogging 5 miles with your family every morning before sitting down to a healthy bowl of cracked wheat cereal. As I look back on these days, I can not find ANYWHERE where it says this is a must to be a member of the church. Nope, not one handbook, not one scripture, not even a book written by one the heads of the church.
As I have become a mother myself, I have seen the unwritten standard for mothers to be: Plan all 15 of your children's birthday parties with a theme, with all home made food and decorations, not to mention the invitations. You will perform your callings with fluff and stuff and handouts to the ultimate. You will look absolutely stunning while doing it! You will get up early to run 10 miles before coming home to make yourself a green shake full of kale and vegetables before making your children a healthy breakfast before sending them off to school, where you will help with the PTA, carnivals and yes, help with crossing the street! Again, it is an unwritten expectation. But who put that expectation on us? We did! I am included in that group. All the while, feeling that some how I have failed as a mother. Maybe I didn't give my children enough one on one time. Maybe I didn't read the right books to them.....it goes on and on.

Well, this past year, after spending time with my family and having long talks...I have come to the realization. PHOOY! There is not a set of rules written that make a person a "Good" member of the church or a "Good" person.

I understand that we have been counseled to seek after good thing. I fully believe in that counsel. The problem that I see is that in seeking after the good things, we have "judged" everything else as "evil" and if you do those things..you are evil. Instead, why are we not teaching "responsibility"? Let me give an example. When growing up, we did not drink caffeinated soda. I truly believed for the longest time that I would go to hell for drinking a Pepsi. Rootbeer was good. We made it ourselves at home a few times. It was fun. So what made Pepsi evil and Rootbeer good? Caffeine? As I have become an adult I am finding that caffeine is not evil. In fact, it helps with my migraines. But with my choice to use it comes....RESPONSIBILITY! I don't feel we teach enough about responsibility. Along with responsibility is acceptance of consequences. I think it is easier to just teach good vs evil.

Guns are not evil. What you do with a gun can be good or bad. To kill animals to feed your family-good. *To kill others-bad. But BOTH have responsibilities and consequences. To have a gun you have a responsibility to learn how to use it properly-good. The consequences of not learning how to care for and use it improperly can be bad. Does this make any sense? Am I just rambling? (* to kill someone trying to hurt you or your family-responsibility and consequences!)
But then it is even worse for us to judge people for the choice to be responsible. Not to mention that if you make a choice to do something, and it has a bad consequence, and you learn from it...GOOD! If you don't learn from it and keep doing it...Bad!
Let me explain that last part. I do not think drinking alcohol is good or bad. I think there are responsibilities that go with it. I choose not to drink. That does not make me good or bad. I know that I would make bad choices and be unhappy with the responsibilities that go along with drinking. Now if I had made the choice to drink and had a bad experience and made some bad choices, and I LEARNED from that choice, I would hate for people to judge me forever for that choice and not allow me to grow from it. If I did not learn from it and kept making bad choices, then yes, judge me! But lumping all people together for their choice to drink and say they are evil is wrong.

Ok, lets look at it from another perspective. If I want a new car, there are things I need to do to get the new car. I have to work hard to earn the money. I have to have a drivers licence. I have to have insurance. These are responsibilities that go along with having a car. Its not good or bad. Once I get the car I still have responsibilities. If I don't check the oil, put gas in it, change the tires...I will loose the privileges that goes along with having a car. This is how I feel about my temple recommend. I don't HAVE to have a new car. I don't HAVE to have a temple recommend. But if I do want it, I have responsibilities. I can't judge because someone else chooses to ride the bus and not have the responsibilities of a new car.


I am looking at people differently now. Yes, I do have standards of what is right and wrong. Good and Evil. I do expect people to be RESPONSIBLE for their actions and choices. But just because I am doing it one way does not make it THE way. I am catching myself more often when I am judging. Instead of Judgment, I am looking at Responsibility.

Other people's ideas of what makes me a good person or a good member of the church are just that, their ideas.

First!

The past few weeks has been full of "First". We are stepping out of the comfort box here folks. For seven years I have stretched and grown working at a High School/Middle School as a signing aide. My title never did truly explain everything I did there. But I truly worked with the best people ever. I loved my job. I was approached by a company saying they could offer me more than the school was offering. I took a leap! Where I am working now is a total "First" for me. It has been a huge struggle to learn SOOOO much! The gal that is training me is 24 years old and AMAZING! (Nothing like the young trying to teach the old a new trick!) Jeff also has a new job. He is doing a "First" also. He is totally in a different environment. For over 28 years he has been working outdoors. Now he is working in an office. He is learning so much also. With all the brain stress of our new jobs, Jeff did something else that is a total "First". He planned a trip for the two of us! AWAY! Now we have gone away on trips before, but it always had a reason for our destination be it a reunion, a funeral, girls camp or something that we didn't plan for just down time. Where did we go?




Hearst Castle! What a fun escape! We had a horrible hotel, but it was right at the ocean. A place my sweetheart knows I truly love. So fun to go see how the ultra rich live.
I will make this a "Second" for sure!

MY Birthday

It is amazing how 20 different people can be in the same room where something happens and you will have 20 different stories of that event.
I write this since I seem to be repeating myself and it hurts every time I have to explain it again..
For my own personal reasons, I do not like the day I was given as my birthday.  It has too many hurt feelings and memories attached to it.  But I learned from a VERY WISE WOMAN (love you Aunt Carole Mercer!) that I can have what ever day I want to celebrate my birthday.

I need things to be positive in my life.  I know this day has happy memories for others...again, 20 different people-20 different view points...

Last year on July 24 something wonderful happened.  I had a double mastectomy and started on a path to healing.  I found that I need to be healthy not only in body but in mind and spirit as well.  July 24th represents this for me!  I love this day!  I love everything about it!  Also not to forget, as I was reminded by my friend Jen Bohn today, that if I visit Utah on July 24th there will be fireworks to help celebrate my day!  AWESOME!

Spring Break

So by the looks at my last post... I have been busy! First I have to say I SOOOO appreciate the cards and letters of support I am still receiving from all over! To go to the mail box and get a letter of love, it just warms my heart! Thank you!!!!!


Spring break this year was a new adventure (pause for the effect..) IN SPOKANE WASHINGTON!







I flew into Seattle


(I waved at my brother and his family while in the air) and then jumped into this...







that took me to Spokane to be helped by the best helper with my bags ever.







Prepare for Grandma OVERLOAD...








What a flirt! He was fine to talk to me at a distance, but finally warmed up.






He took me shopping to the best place ever!






All was fine and dandy until this blond showed up!






We went to see the sights of the town...






We did some coloring...






Spent some time feeding ducks...






and even tried to keep some popcorn for himself....(Good stuff! His Dad made it!)







and figured out fast that if you just kiss Mom, you can get just about anything you want...






I guess I stayed too long for when we tried talking while his shows were on, he would try to stop me with his mind powers!






But then... he knows how to get his way...







A big part of me was left in Spokane with this little family!







I love my family!

Despicable Me 2 - Happy Music Video - Pharrell Williams (2013) HD

Savior, may I learn to love thee, walk the path that thou hast shown, pause to help and lift another, finding strength beyond my own. Savior, may I learn to love thee-Lord, I would follow thee. Who am I to judge another when I walk imperfectly? In the quiet heart is hidden sorrow that the eye can't see, Who am I to judge another? Lord, I would follow thee. I would be my brother's keeper; I would learn the healer's art, to the wounded and the weary I would show a gentle heart. I would be my brother's keeper- Lord, I would follow thee. Savior, may I love my brother as I know thou lov-est me, find in thee my strength, my beacon, for thy servant I would be, Savior, may I love my brother-Lord, I would follow thee. This is the song that closed the Sacrament Meeting on Sunday. It was our last time as members of the Mt. View Ward for the next two years. (Yes I bawled!) I love this song and it has taken on an entire different meaning to me now. Jeff and I have been called to serve in the Peach Wood Ward for the next two years to serve the Deaf and Deaf/Blind who have also been moved to the Peach Wood Ward. ...Walk the path that thou hast shown, pause to help and lift another, finding strength beyond my own....I struggle with sign language. I pray often to have Heavenly Father help me to better serve. How better than to be in the same ward with my Deaf/Deaf-Blind brothers and sisters. In the quiet heart is hidden sorrow that the eye can't see...this was shown to me several times this last year. When I shared my story of struggle with cancer with my sisters, several sisters shared quietly with me of their own struggles that no one else knew about. I hurt that these sisters have been struggling on their own! I find that I am softer at times since I know we are ALL going through something, we just don't all show it. I LOVE Mt. View Ward! I feel as though the people there are family. I have been served and loved GREATLY there. I have to admit that it is hard for me to change wards. I am trying to keep an open heart and mind to this new adventure. I see the wisdom in the move. It is going to be bumpy for the first few weeks, months...BUT I have seen arms open as brothers and sisters have already expressed the desire to get to know us and to try to communicate with the Deaf on their own. HURRAY! The support has been AMAZING! I haven't moved, I am in the same house, same street..So I know I will still see by brothers and sisters from Mt.View ward. I now have opportunity to meet new friends!...May I love my brother as I know thou lovest me. Find in thee my strength my beacon, for thy servant I would be! Savior, may I love my brother! Lord, I would follow thee!

2014 Here I come!

If I think back to January 2013 I NEVER would have guessed the kind of year I would have had. WO! I am humbled and feel so blessed! Now to look forward to 2014. What will this new year bring? I have some insight on a few things that I will post in a few weeks. It is all hearsay right now so I will not spread rumors. In RS today the theme for this new year was presented. Matthew 5:16 Let your light so shine before men, that they may see your good works, and glorify your Father which is in heaven. Sister Simes compared the work that the sisters in our ward have done to a light. She had several lanterns and lamps etc. to represent what work we have done...service, prayers, visiting teaching, meals to those in need...the list goes on. I have been a receiver of the light several times this past year. From the prayers, to meals, to kind words of encouragement to sweet gifts. I hope this year I can pass on the light. I have felt this Christmas season though that something was missing...our family. I was blessed to have my mom and her sweetheart come and visit for a few days and it felt SOOOO wonderful! We also were able to go to Oregon and visit with several family members (and friends we consider family!!) and all the more I realize that I have not spent enough time this year with those I love. I am going to try and spend more time with those I love! I also realized that I didn't take very many pictures! WHAT IS UP WITH THAT? Not this year! Tuesday I start back to work. I have to say I have LOVED my time at home. I thought I would be bored. I haven't had time to be bored. I really was not planning on going back to work until the middle of the month, but darn it!, I didn't play the "Woe is me" card enough. My doctor said I can go back now. BLAH! But I am hoping that going back to work will help me to use my time more wisely. Sleeping in every morning has been so wonderful, only, half the day is gone by the time I get up and get going. D&C 88:124-125 it says; 124 Cease to be idle; cease to be unclean; cease to find fault one with another; cease to sleep longer than is needful; retire to thy bed early, that ye may not be weary; arise early , that your bodies and your minds may be invigorated. 125 And above all things, clothe yourselves with the bond of charity, as with a mantle, which is the bond of perfectness and peace. These are some great words. Now to put them into action!

One Month And Counting

Every year about this time, at church our ward has a very special Sacrament Meeting. The meeting is filled with the members sharing testimony of songs from the hymnal. This is one of my FAVORITE meetings! I am never sure when it will happen, I just know around Thanks Giving and Christmas time it will happen. Well about 2 weeks ago was this meeting. What a meeting! #1. My heart was so full from all that has been happening the past few months. #2. I love to sing, but my lungs have not been strong enough for me to really sing.. #3. The first song sung..."Because I have been given much" Yes, I started to cry...And I am not a pretty cry-er. Because I have been given much, I too must give; Because of thy great bounty, Lord, each day I live I shall divide my gifts from thee with every brother that I see who has the need of help from me. Because I have been sheltered, fed by thy good care, I cannot see another's lack and I not share... My glowing fire, my loaf of bread, my roof's safe shelter overhead, that he too may be comforted. Because I have been blessed by thy great love, dear Lord, I'll share thy love again, according to thy word. I shall give love to those in need; I'll show that love by word and deed; thus shall my thanks be thanks indeed. Today is one month since my surgery. Wow! One month cancer free. That is so wonderful to say. This time last year I didn't even know cancer was in my body. Today I have 6 awesome scars to prove I am stronger than cancer. I also have a funny wheeze and I have an annoying cough. Both of which I have been assured will go away. My side is still sore and I have found that I use my right arm way more than I thought! Sleeping is still hard since I am a side sleeper. I have one more appointment with my lung surgeon in January and then he doesn't expect to see me again for another year. I have check up appointments for oncology and for the breast surgeon doctor also in January where I expect to get the same results of not seeing them again for another year. So from here I can only get stronger! We were able to go up to Oregon for Thanks-Giving. We were able to spend some time with dear friends (we consider all of them family)in Medford and then travel up to spend time with family in Salem. Our oldest and her husband were able to travel down from Washington to spend time with us. SO GOOD TO SQUEEZE EVERYONE! I did miss the rest of my family though. So many health problems, financial problems, time problems, travel problems... the list is long for why we can't all be together at one time. BUT so happy for the time I had. I love my sweetheart and love that I got to spend time with him traveling! Last night we had our ward Christmas Party. My heart again was so full, from a gift bag from a DEAR Lady to seeing my ward family, all the hugs and well wishes, and knowing how much I love them! I was in a room full of love! The program was great and the food de-lish! Our dear Stake President said, "We are so happy to have you HERE tonight!" That touched my heart! SUCH LOVE! BLAH! (Still crying!!!!) This Christmas we don't have money. BUT we have a testimony of love for our Savior Jesus Christ and all that he has done (and is continually doing) for us. We have a beautiful family that I pray for and give thanks for every day. We have a beautiful, warm house to live in. WE are blessed! ( Here is Some Snow Humor!)

Two Weeks Cancer Free

Its hard to believe that two weeks have come and gone already since my lung surgery. It would be great if I could say "Time Flies When You Are Having Fun." I am THANKFUL for comedians as I have their voices in my head while I am healing that give such a good giggle. The face of Calvin from Calvin and Hobbs pops into my mind OFTEN! OK..so where am I with my healing...Since the moment I was released from the hospital, Jeff has had me moving! I was released Wednesday night and Thursday morning Jeff got me up early to get into a much needed shower. Then we were out of the house most of the day as well as most days. I am so sore on my right side and I am frustrated at how little I can pick up. I don't sleep well yet since I can't find a comfortable spot. I came home with a horrible cough that I still have not been able to shake. I have a cool wheezing sound that intensifies when I walk up the stairs. Other than that, if you were to see me, you never would have guessed that I had surgery two weeks ago. I do have to go in for another chest ex-ray this week since I have a small amount of fluid in my lung and they want to make sure it has not increased. Then I have an appointment next week with my doctor (everyone is out this week for Gobble Day). He is quite happy with how well I have recovered but still wants me to listen to my body and not over do it. Last Saturday was our adult session at Stake Conference (church meeting) and Jeff and I went. My favorite question of the night was from the Stake President himself..."What are you doing here?" Well President ____ it is Stake Conference. I have had my name on over 5 temple prayer rolls, my ward has been praying for me and a United Methodist Church in Texas has been praying for me. I have a very strong testimony of prayer. IT WORKS! My heart is just over-flowing with all the love that has been shown me. The beautiful flowers, the cards and gifts have been amazing. I have learned through a few of my gifts that soft things really help recovery!!! I LOVE my soft socks and blankets! I am putting that one in the brain to remember later for others who are in pain. I have seen on Face Book several people are doing their month of things they are Great-FUll for. I have not joined in since I don't even know where to start. I have so much to be THANKFULL for. I talk to my Father in heaven several times a day telling him all the things I love. My heart is also hurting for the ones around me still battling with health or finances or family problems. My step mom has been battling health problems so much worse than my own for years now but I don't hear but little bits now and then and now I have a better understanding of the daily frustration that she has been facing. I worry about my step dad and his struggles for health. One of the men my husband works with had a very scary heart attack this week. I think that when the scriptures talk about the plagues that will be happening in the last days, it is talking more about health plagues. Several of my friends fight depression, cancer, dialysis, and other problems. I had a fun day out with my youngest daughter today and in our discussion I let her know that not for one minute, am I sorry that I have had cancer. I am THANK-FULL that my father in heaven wanted me to stretch and grow and knew I could handle cancer. I don't know what he wants me to learn from this adventure but I know that he loves me enough that he walked me through it so I could grow and someday I will need to know all this to help another. I learned that we are ALL going through something REALLY hard in our lives. Not one person is sliding through. But what we do with that hard time shows the person we are becoming. I was given the opportunity to talk to some of the young women in our ward and I shared that I have been on this path with cancer. Now it is not my choice if I want cancer. BUT it is my choice how I react to it. I can sit down and throw a temper tantrum and complain about it to who ever will sit still long enough to listen, or I can educate myself and find humor and TAKE IT ON! I have learned something about myself..."I can do hard things!" I was given some great advice from my high school friend Marlisa SEVERAL years ago when I found out our second oldest was diabetic. She said..."One day you will want to wear the red shirt, but you find out the red shirt is dirty. Cry that the red shirt is dirty, but don't cry because your daughter has diabetes. Learn how to deal with the diabetes and be happy you are helping your daughter to be healthy." I hear that advice again now...With the love of my INCREDIABLE husband I say over and over again...I CAN DO HARD THINGS!

My giggle

Jeff reminded me of something that happened in the hospital... Wednesday afternoon while waiting to see if I was going to finally get out, I had done my laps around the floor and had just climbed back in bed. I guess I dozed for a bit. I woke up to a LOUD noise! I looked over at Jeff sitting in the chair next to me.. Me: Was I snoring Jeff: (giggle) Yes Me: What to know how I know? Jeff: Yes Me: Well, my throat is dry...and I was dreaming that I was racing on my big-wheel on concrete... yep, I was making the sound of the big wheel on concrete with my snoring! That was great!

Cancer Free!

Again, this is my journaling and so I am putting personal information here..VERY OPEN...but I need to record it. I am already starting to forget some things... November 9th (Night of Nov 8th): What a night. I decided to take a sleeping pill to help me so I would not be up all night stressing over things I had no control over. I took the first of my two showers that I need to sanitize for surgery. Pack a change of clothes and my toothbrush and hairbrush and go to bed. I had set my alarm to get me up at 4am but for some reason it didn't go off. Jeff being a light sleeper, woke me up at 4:15 saying we need to leave soon. I think Heavenly Father helped me to sleep and not wake up too early so I didn't have time to piddle around. I took my second sanitizing shower, blow dried my hair, brushed my teeth and we were out the door. My check in time is 5:00 am. On the second floor we are met by my nurse for pre-op. I get to change into my stylish gown and start all the IV stuff. First poke..Oooppps..sorry...lets try again. (That will leave a bruise..)OK, IV is in. Jeff and I are doing our "entertain ourselves" routine which of course has us laughing. Nurses from the other side of the floor come over to see what the giggles are all about. We are told we made her morning. 8:00 I am headed to the operating room. Very nervous. I had to wait out side of the room for awhile since the room is not set up for me yet. I had a nice conversation with nurses (male) outside while waiting. They are surprised I am so calm. If only they knew what prayers I was saying in my heart for how scared I was. I am finally wheeled in, I move over to the operating table which is not very wide. It is ok since I will be on my side for the surgery. I am given my knock out juice and I am gone!!! Next thing I remember is (with the help of Jeff) being moved (back in my original bed)in the elevator and having two nurses that had no idea how to steer this thing. I was in and out, but knew I had a lot of pain in my side. I was given my own room this time! Hurray! And in a perfect spot on the floor. A back corner! I am so nauseous! I just do not do well with coming out of the anesthesia. They give me morphine that I can administer my self which I just get more nauseous every time I push the button. They try to get me to eat some beef broth which just makes me throw up. It is hard to breath and now try to throw up?! Not a good combo. I notice Jeff keeps dozing in the chair next to me which is not a very comfy chair. Poor man has been up since 4am. It is now 10:30 pm. I send him home. Nothing he can do for me, as much as I LOVE having him there, I need him rested. I need to go to the bathroom, kind of...not sure..think I should try it. I call the nurse (turns out to be a male nurse but at this time I just don't care..Oh, and I am on my period!) He helps me into the bath room with a walker with my chest tube contraption hanging on the front of the walker. Found out..Yes, needed to pee, yes they must have cathed me because it BURNS to pee, and yes I am covered in blood and need to change my pad and bedding. Great Start!!! Not to mention that it is so hard to breath and bending over HURTS! Trying to wipe myself and clean myself up is a huge challenge. I didn't do it very well. Because of my mastectomy with lymph nodes removed on my right side, I can only have the IV and blood work done on my left side. Blood pressure is taken on my legs. So, left side has two IV ports and lots of pokes from blood removal. Right side has chest tube and new incision from surgery and since the muscles were cut it is hard to lift my arm or even move it. Can't bend over. Legs are shaky. CAN'T BREATH! Even hard to talk. Now back up a bit. The bed I was in for pre-op is the bed I am in now. It is pretty fancy smanshy. BIG, bulky with all kinds of bells and whistles. Instead of putting leg cuffs on you to keep from getting blood clots, the whole bed mattress is inflating and compressing, all the time..all night long...all day long..always!!!! It can also take my weight. Well, it doesn't TAKE my weight (I wish!) but it can weigh me. But the nurse has to take all my pillows and lay me flat to do it. Not such a good thing.. Ok, so all night I have trouble sleeping. I doze for a minute, then someone comes and takes my blood pressure, pulse and temperature. I doze for about an hour and lab comes in to take my blood. 3 hours later lab comes in to take a chest ex-ray (yep, in bed..again they have taken my pillows! RUDE) Doze for a bit and then about 7am I have blood pressure, pulse and temperature taken again. Breakfast is coming so we have to get up in the chair. The doctor does not allow his patience to eat in bed. Its a good rule. I am on a liquid diet for breakfast. Chicken broth, Jello, herb tea. I ate the Jello. I am loving the ice they have and I can have all I want. Which is good cause I go through it! Jeff comes about 9:00 and we are out for our first walk. I have a FLAMING Red Walker! (with a chest tube contraption on the front) I am a vision of loveliness! I make it one lap around the floor and I am done. Back in bed, ready for pain killers. I doze for a bit. Now everything kind of blends together. It is all the same thing...poke,prod,pee,and can you poop? (Done with that question! But you can't leave until you poop!) I have two nurses that just make the time fun. One is in training with a lead nurse over them. I have Cindy who is the lead nurse with Ryan who is the nurse in training. They are SO fun, but you only get them for 12 hours. My friends gave me a camo hospital gown! LOVE IT! I wore it all over that place! Well, with the loss of a lobe of the lung, you get a prize of a cough. The best part is, it is hard to take a good breath to cough and the cough hurts the lung and the surgery side like nothing else. You are told to hold a pillow to your side and squeeze while you cough..it helps but only a little. Tuesday night I finally get my chest tube out. The only way to do it...cut the stitches holding it in, get a good grip and pull! I had a bit(and I mean a bit) of a clue with what it might feel like from how it felt when I got my drain tubes out from the mastectomy. But those were 1/3rd the size maybe of the chest tube. Yep, it hurts! Bad! Now have to wait to see how I do over night to see if I can go home. That night was a hard one. I just couldn't take the bed anymore. I unplugged it. I found out that when you unplug it, all the air goes out of it and it totally deflates and you feel every bar, wire, and what ever else is under that pad. I put up with that for about 2 hours and then plugged it back in. I asked for pain meds since I could not sleep and the cough was not giving up. I had just fallen asleep when lab came in for more blood. Then when I FINALLY start to doze..ex-ray...I gave up. I just won't sleep in this place. Wednesday...LONG DAY OF WAITING. I so wanted to go home. My blood pressure (taken in my legs mind you) is 158/130. Everyone is worried and start me on meds for high blood pressure. I have a bladder infection and start on antibiotics. My throat has a weird tickle that makes me cough..not that I wasn't doing a cough already..and Pretty COLORS! . We are finally released about 8:00, but need to run to Target before it closes to get prescriptions filled. They have new script pages and the doctors don't seem to know that they need to put a little number at the bottom or the pharmacy won't fill it. So two of the drugs I needed for pain and sleep I can't have. Oh Well. I know I have Nyquil waiting for me at home. Klaira makes me some mac and cheese that taste SO GOOD! Yes, I said it. I have found out that surgery also messes up your taste buds. Food has been awful. Salty foods taste good, but with the "high blood pressure" I am not to have salt. I drug up and snuggle in on my couch which has a built in recliner. Now this tickle in the back of my throat is REALLY annoying! It makes me cough. It hurts to cough. I do a little sound, hum, that sometimes helps. Jeff can hear it all night upstairs in his bed. He knows I am home! I sleep some, well, more than I did in the hospital, but not much. Jeff gets me up and in the shower to start the day. THE BEST SHOWER EVER! 5 days of no showers is not something I recommend. I was gross! It is amazing how much a shower helps. We are off and running for the day! I did better than I thought I would. I thought I would have a good night sleep..I was wrong. Really bad night. My arms kept falling asleep and my butt was just done! Trying to find a way to be propped up and comfortable is not an easy thing. When I got up this morning the swelling on my right side has swelled up to the size of a tennis ball. The pain is more intense and the stiches from the drain tube hurts. Now I like to think I am a tough gal, but I hurt. I am a bit worried about the swelling so I call my doctor's office. Yep, I'm a ninny. Nothing like feeling I have just wasted people's time. All that I am feeling is normal if not expected. "And this cough you have, why do you have it?" asked the nurse. She thinks it is allergies, I think it is a cold. SO, with all this adventure, what did we find out. I guess the tumor had been there for a long time. The lobe was shriveled up which didn't show up on ex-rays. They took the lobe and a section of airway above and below it and attached the lower lobe to the upper. They removed 3 lymph nodes and ALL of the nodes and the section above and below show...Drum roll please...NO CANCER! The cancer was contained to the tumor covering the air way. I have an appointment with the oncologist in January. We are expecting that I will not need any chemo or radiation. The oncologist may want to do chemo just to make sure, but for today, at this moment I am holding on to I AM CANCER FREE!

November

November is Lung Cancer Awareness Month. The ribbon for Carcinoid Cancer is Zebra print! ROCK IT!

Still Holding..

SOOOOOO..My first date to remove this itty bit of cancer was set up for October 21st. Then it got moved to November 4th. Then... You got it... It was moved again. UUUGGGGGGG!!!!! When I got the phone call Thursday night (I was suppose to do blood work that next morning) I will admit I cried a little. After calling my sweetheart in a panic (They were pushing for December 6th)I was able to put it into perspective again. I don't hurt! I don't even know it is inside of me. I feel great! Well... where I work is a little petri dish of every kind of germ out there... I was exposed to the flu, strep and other stuff in just one class room this week...(I started feeling yucky on Tuesday night and have been feeling a bit achy with a sore throat for the past few days)... I know that I am going to hurt when I have my surgery. But I think it is like a mother ready to face labor to get to the reward of a baby to love... I will be cancer free! Everything has been on HOLD. But, I have food in the freezer, the things that I am responsible for regarding our Women's Day activity for church is ready to go. I will get my house all spic and span this week and maybe even get some gardening done. I am scared for the un-known... how will it feel? How long will it hurt? Will I struggle with coming out of the anesthesia like I have the past two surgeries? I am at peace knowing that my Heavenly Father has a plan for me. I know he has brought me to this very talented surgeon who will take good care of me. I know that I have many wonderful prayers being offered up for me. I know that I have many friends and family who support me! I can do this! Scar number 6! Awesome!

In a holding pattern...

So tomorrow morning was suppose to be my surgery day...because of government shutdown, I was postponed to November 4th. I really didn't even want to share when my new date is because it might change again. I am in a holding pattern. -Noun:1. a traffic pattern for aircraft at a specified location (holding point) where they are ordered to remain until permitted to land or proceed. 2. a state or period in which no progress or change is made or planned. So I am basically number 2. It was hard to go into work and tell my boss and the gal who does all the schedules {for the interpreters (terps), signing aides (that's me) and the kids to make everything run smooth}, that I was not going to be out as planned. BUT...please put everyone on a holding pattern for me..UUUUGGGGG! MANY years ago I used to love to be spontaneous and hate-ed being held to a schedule. As time went on, being a mother, I came to live by it, as if it were the only way to function. It makes it easier to plan when to have a panic attack...Lets see..it is 2:00 in the afternoon... NOPE... Don't have time for a panic attack, kids have sports and I am bringing the snacks. So needless to say, this Holding Pattern has really put me in a funk. I am trying to plan out my days now. Lucky for me, I have been put on a committee with a few women and we are in charge of putting together a special day for the women at church to come together to do crafts and have classes, to socialize and better themselves. This has kept my brain busy with coming up with craft ideas and making them easy for the basic crafter to do. I am also using this time to cook like crazy to get stuff in the freezer that I know my family will eat. The big problem is I really have no idea how long I will really be down. A co-worker had the same surgery and told me I would feel better in about 2 weeks but take 6 weeks to really regain my strength. My doctor has taken me off work for almost 3 months after surgery. I am told this is the most painful surgery even worse than open heart. That's not scary at all!?!?! I have so many people praying for me and encouraging me. I am blessed!!!! SO..we continue in our holding pattern...

I'm Not the only one!

A friend told me a bit ago about a young woman fighting Carcinoid Cancer, same as myself. My first thought was," But research says that only one in a million get Carcinoid Cancer and I am that one." Only to find out, no...I'm not the only one. This brings so many different feelings to the surface. One, I never want anyone to have to go through Cancer. Then, I am so Thankful to have someone else in the same fight to share what they have learned to help guide me. Janis has shared her experience of Breast Cancer with me. Now I have Janelle Smith Connell to share with me her story of Carcinoid Cancer.(janellesfight.blogspot.com) I am finding out that everyone I meet has a story. Everyone is going through something. Today I had lunch with a friend that is learning to be a single mom. She is learning to BE. Another friend lost two of her daughters in a tragic accident two years ago...All these women are taking on their trials and are sharing with me, to help me to be strong. I didn't mean for this to be a sappy entry, BLAH! I am THANKFUL for the strength of others that help me daily. I am Blessed!

Just who am I married to?

I have an amazing husband. When I first met him, he worked at a lumber yard. He said he had done some building of stick frame houses with his Dad growing up. So, I had married a lumber yard worker. Not long after we married, he and his Dad decided to build Log Homes together. Now he was a construction worker. During the years he got his own contractors license. This is a great title to say, he can do electrical, plumbing, drywall, painting, roofing, cement, OH and he also is a Heavy Machine Operator. WO! He is a logger! He is a landscaper! He is a hunter and a fisherman. He can cook, clean, do laundry and even sew. (He has been known to even do cross stich!) Log Homes have not been in demand for the past several years, so he became a Property Management Maintenance Man! With the help of a dear friend, he was able to check off his "To Do" list, to become a Airplane Pilot. This has led him on a unexpected journey this last weekend. Through TONS of learning, studies, and practice, he is now (after 3 LONG written test and a grueling 11 hour oral and practical test)a Certified/Licensed Airframe and Power-plant Mechanic. (That means he can fix planes!) With this long list of accomplishments, he is also a hard worker, a father, a brother, a friend, a church going man, a priesthood holder, HE is my sweetheart! I am blessed!

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!