Tuesday, August 19, 2008

See July--continuation from beginning to get to here

I don't remember when we first went to St. Jude in Memphis. I just know that my mom's mood was dark and I was very confused because she insisted I was going to be just fine. I wondered about school and how I would catch up but it wasn't the first thing on my mind. When the doctor said I would need an operation as a biopsy surgery to where they found the original tumor, I grew angry. My dad asked "Couldn't she wait a while she's not even over the other." My mom and the doctor both said that if I had metastatic disease then it would be best to know it then to start treatment. I asked if I would be able to try out for pee-wee cheerleading which started in the 4th grade and was told absolutely not. This was the most heartbreaking news of all for me, I think. I didn't catch how serious what I had been going through was.

Halloween 1986 came and went. I was a clown that year and we have a picture of me attempting to smile but it wasn't easy. I knew I would have surgery again in a few days and wasn't looking forward to it. I had a habit of swallowing gum when I was 9. After my surgery my dad joked that the doctor couldn't get in due to my insides being stuck together. It was a lie. He did get in.

Back in 1986, St Jude hospital used St. Joseph's OR and there was a tunnel that connected them. I remember being pushed back and hurting very, very badly. The orderly wouldn't slow down though. He knew I needed to get to the room and that be it.

I don't remember a lot until the phone call when mom was told it looked like the cancer hadn't spread. Also I remember being asked to get up and walk around. Oh how I hated it. I moaned and groaned. Until I saw a little 5 year old practically racing around the nurse's desk not moaning at all.

I couldn't let someone a little more than half my age outdo me. Of course I didn't realize he had a brain operation and it wasn't going to hurt him as much to walk as it did me because my abdomen had been cut. This time the doctors tried to leave my belly button but the first surgery had mutilated it. I had a huge gash on my stomach and the wound was still yellow in part due to the betadine bath in the St Jude bath tub the night before and the betadine from surgery. It was U-G-L-Y.

I remembered back to the one before when my mom and the doctor discussed scars and keeping it where I would be able to wear whatever I wanted. Yeah, well, those days were over because 6 years later I would have surgery in the same spot with a much longer incision and it became a glaring scar that everyone could see. My mom and I fought when I was 16 because I still wanted to wear a two piece bathing suit and she thought I wouldn't want to be asked about my scars. I won the fight. I don't remember being asked about it specifically until I went to a different school in the 10th grade and showed it to prove I had went through ovarian cancer. No one believed me but they would a few months later. This all comes later.

I remember a nurse bribing me to eat a grilled cheese sandwich by saying I couldn't go home the next day if I didn't eat it. I cried and I cried. I wanted home from St Jude hospital. I already knew I would feel better when I got there--something that always held true so I choked the sandwich down in between tears. I got to go home. I thought things were going to be normal in a couple of weeks when allowed back in school.

Things couldn't have been much more abnormal.

First of all, I learned of having cancer from my best friend who had learned from my reading teacher telling our class. As a 9 year old I knew nothing about cancer and neither did any of them. When I came back to school, there was a lot of odd feeling. I was allowed to leave to my locker early so no one would bump into my stomach with their books so that may have bred some resentment. I was given more attention from the teachers than I had been. My then best friend said she wished she had a tumor and I told her she didn't know what she was talking about and that she could have mine. Special attention or not I knew it sucked.

Going back to school at this time cooincided with me crawling into a shyness shell I still remain in to this day. From the 4th grade on, I was labelled "Most Bashful" in our "Who's who?" I hadn't been the shy kid before. As a matter of fact, I had been almost bossy but after rejection upon returning to school I was afraid to speak to anyone. There were times kids would cross the hall from me because they honestly thought I was contagious.

Between 1986 and 1992, I returned to St Jude hospital for ultrasounds, ct scans, etc each 3 month, 6 month, and finally one year block. It was on my first one year block that things came unraveled. During this period, I had went through bilateral breast biopsies twice that showed cysts but nothing indicating cancer. Until that very first yearly checkup when my BP was twice what it should have been and my bad mood, going to bed at 4 p.m., and general uneasiness found its cause.

It was about 3 months into a new school year at a new school. I had transferred because I wanted to force myself to not be so shy and to have more friends. It wasn't happening at the larger school I attended so by freedom of choice I went to a small school that no longer exists. Even there I would be teased but the difference is that they worked closely with me and I would graduate with my class in 1995 like I was supposed to but that comes later.

Looking back on that period, I see myself in the two week wait before my laparoscopy to find what was blocking my kidney and causing my blood pressure to rise. I would ask to be excused to the restroom, pull my legs up in the stall where no one knew I was in there, and take my blood pressure. I had been given procardia to take when it got past a certain level and I had to watch it closely. I was ashamed of this and embarassed but each time I tested it was high enough for medication. This went on for two weeks because the doctors thought my blockage was a lymph node.

It wasn't.

Well, I was going to create a new section

but I completely forgot how?

No new news in my life really. I will be seeing the GYN late in Sept about having my uterus removed. I am really not looking forward to this and I may opt to have endometrial biopsies each year instead. All the surgery has caught up to me. If I can't have this done when they do my nipples then I will wait.

I can't believe I had my masectomy on Feb 28th and I am STILL not finished with the process of getting new breasts. I even settled for a B cup and I'm still waiting. Apparently it takes a while for implants to settle and this explains my dimpling and they can't do anything with creating nipples until things have settled. I'm starting to grow used to my body looking this way. Have I completely accepted it? No chance but I'm working on it. I know God has reasons for even the worse things that happen so I'm clinging to him and trying not to ask questions. Sometimes it is very difficult not to ask them though.

I'm amazed at how many women are being diagnosed with breast cancer prior to age 40. I always thought I wouldn't have anything to worry about before then--not really. My fibrocystic stuff was always benign and I was told not to worry because my young age worked in my favor but since my diagnosis I have had an online aquaintance be diagnosed and a sister of an online friend diagnosed. She asked if it was because of something new happening and I like to think it's because we are just catching things sooner.

I drive myself crazy sometimes. I looked up how high the odds are of cancer the younger you have ct scans. I can't remember but it was insane. I had my first ct scan in 1978 and was not even a year old. I've had a bunch since then plus MRIs and all kinds of tests.

I look at the cancer cure rates now and am no longer as impressed. Now I understand these reflect 5 year cure rates and many people go on to have later relapses or be diagnosed with another type. My first dysgerminoma technically went down as cured but at 6 years in remission it came back. Who knows what the real odds are? That's what is so freaking scary about this disease. What sucks is waiting 5 years to hear CURE only to have year #6 bring the cancer back. I'm not griping though. I once read a case where dysgerminoma came back after TWENTY years. I will be free and clear from that one for 16 years on Feb 15, 2009. Then 13 days later I will celebrate 1 year since the ductal in situ was diagnosed.

I can't help but worry about if they'll find cancer in my colon or small intestine--those are the next to be tested. Or somewhere on my skin since I worshipped the tanning bed for 6 years every single day from age 15-21. But with all this I have to continue to remember that life is something that should be taken day by day. I've worried so much away as it is. I'm tired.

Tuesday, July 29, 2008

I'm creating another new blog section

It's time. After Saturday, I feel like I'm getting a fresh begninning.

When I started this blog, I shivered at the thought of Shawn reading it. Because I shared it with you guys, my online friends, and no one laughed at me (or at least told me they laughed at me) I decided it was safe to show Shawn. I didn't know how he would react.

Imagine my surprise when I saw my husband CRY for maybe the third time in the pretty much 8 years we have known each other!!!! He told me I should start that book and if it did publish then we would worry about the $$ and how it affects my medical later on.

I was surprised to see him cry and I was glad to know it affected him like that. I'm still home. No mental instituition. Even though that day took all I had mentally, I wish for many more days like that--where everything is clear and I feel Christ's prescence so near. I no longer see God as a punitive God. I am reading this book called "Beyond the Veil" it is by Alice Smith and it is teaching me so much. She talked about how intercessors often feel depression because that's actually a call from God to pray whether for them or for someone else.

I saw that yesterday.

I have a friend who I have known since the third grade. That's longer than I have heard the word "cancer" without it being in regard to my grandfather. Yesterday God gave me the opportunity to help her out. I wasn't able to even bring him up but I showed her a part of the love his son has showed me. I did it without her even knowing. I don't know her spiritual life but I saw very strong signs of the same OCD and anxiety I've battled for years. She lost her wallet. I was there to calm her down. It seems so small and insignificant (my help) but after Saturday I know that sometimes those small things matter more than we know. Christ cares about small things. He cares about me even though to him there have been so many Christians it must be like we are ants and he is the king ant. Except for him the word king doesn't exactly fit because he is much more than that. A constant prescence whether felt or not. He feels sadness when we sin and that makes me want to make an even bigger effort not to do it. I'm a changed woman over ONE day!

He revealed to me a changed marriage. He revealed to me that I've slipped in regards to teaching the kids about him though even before I had began starting them to pray. I guess mommy didn't want to believe she no longer had a baby but a small child capable of true prayers.

Now I'm daring to dream and hope about each day because I know I'm here for a longer haul than I ever thought. I have no illusion that the medical things won't still be there. The migraine that woke me up at 4:30 am this morning was a reminder of that. The pain doesn't seem so much though. It's no longer going deep enough to get to my soul. In one day God showed me through his son that 1) my marriage is saved and if it is meant to be Shawn and I will see our 50th wedding anniversary 2) he still has a purpose for me and can use me and even more importantly that I know I am on track with that purpose 3) when we sin, he feels sadness. When Shawn had a lapse due to exhaustion that day and got loud with me I wasted no time with the tears. I honestly felt like I felt what Christ was feeling! Of course not to the full extent but I was upset Shawn was angry and that he was feeling bad. It made me cry.

Now THIS is exciting.

When I let Shawn read the blog post, he said "Now that explains a whole lot about why you have been acting differently". Isn't that key to knowing something sincere has happened? Also my friend who had the panic attack yesterday just looked at me and said "something has changed about you---I can't put my finger on it but you seem SO strong. I know you hate hearing that because you said anyone would go through chemo and cancer if they had to but you do it and it doesn't seem to weaken you. You seem stonger."

I'll see her again sooner than I would have. I have an opportunity to share my witness which I think she needs to read (I can write it better than say it). I don't know what her relationship with the Lord is like and it is none of my business but I feel drawn to share for some reason--the same way I felt with Shawn last night. I thought in my head "God, are you sure? He hasn't shown much interest in you beyond church on Sunday." Well, there was still the small voice saying "do it!"

Now I feel more brave. With Christ all things are possible. Those aren't just empty words but the real deal. We don't deserve it but he loves us anyway. I got my wish to feel unconditional love that day. He sent it to me through the Spirit. I saw it from my kids. Now that I know he cares enough about this "ant" I also know he cares about his other ants. I felt his unconditional love for me and a heightened sense of the unconditional love of Hannah more so than Owen but definately from both.

I'm so glad what I felt Saturday isn't completely gone. Yesterday wasn't a day of revelation but I asked for only enough for me to be able to understand and endure. I don't expect an end to it but do imagine it will be spaced out. That's ok. He knows best.

And gone is any resentment I had over the cancers and this Cowden Syndrome. Now I will share that I have felt resentment. It's tough seeing moms better able to provide for their kids because they can work outside the home and knowing my health has kept me from working to help has been a sense of shame for me. A better word may be sorrow. It was revealed to me not to feel that way and that I have more important work at home.

The whole day showed me that my life has been restored in so many ways----anxiety next to gone, marriage is better than it ever was, my new surgeries are the right thing to do and not to fear what will happen as a result. Now writing the words "I love Jesus and am SO grateful for his gift" have more meaning. That deadness is gone. The realization that something I wrote touched my husband's heart is one of the best things. Knowing several people said what I wrote made them have tears in their eyes makes me 110% sure that really was my Jesus and not just a really, really good day. Knowing I couldn't sleep until I got that written down makes me know it was a prompting to write it down not only for my own benefit but for how it could benefit others because the next morning I woke up as I thought--less there in the revelatory phase but still that prescence and the changes aren't all gone.

It's showing in my behavior ya'll. It's real. No more empty prayers. My plan is to study more in the area of apologetics to be better equipped to share my testimony with people and to be able to support it with true facts. My prayer life is about to increase exponetially. I know with a certainty Saturday came as an answer to the prayer I had at the altar that day. I said "ok God, so are you tearing me down to build me up? What's the deal?" Now I know. I can make Sat July 26th as a day to celebrate each year. I had been celebrating Feb 15th because it ended chemo and now I'm changing it as I have a day to remember not fearing cancer and that's more of a special day than most I can think of.

Saturday, July 26, 2008

I'm whole even if my parts are at different medical places lol Read this. It isn't stupid

I know to some people what I am about to post may sound completely like I have lost my marbles but I can't sleep until I post this. I know that when it is posted I will sleep as soundly as my Owen does as I am for once completely psychologically, emotionally, spiritually, and finally physically (of course) exhausted.

Several weeks ago it started. I felt like God has slipped out of my prescence but I refused to believe he had. I asked for prayers everywhere I could think of to ask for prayer. They have been answered.

I had a couple of dreams that I'm not going to go into detail about because they are very personal. I will say that these dreams preceeded my going to the altar at church to rededicate myself so now I see them as being significant. At the time they were just very vivid dreams that stuck in my brain and I couldn't figure out why. Today God gave me those connections. Like I said, I am not going into detail because this is SO intensely personal and I don't want people thinking I am crazy because I'm not though at some points today I thought I was.

What I have asked the Lord for was restoration. A glimpse beyond the veil so to speak. To guide me and show me purpose. I thought he wasn't listening but boy did he deliver today in a HUGE way.

Everywhere I turned I saw things that I could relate to the Gospel. I spent this day entirely with my kids playing with them and loving them. I felt the love of Christ so completely clearly that I have tears right now typing about it. I know that this love came out too because my kids were so completely clingy to me. Right now they are fast asleep. They had a big day! When we prayed tonight Owen told me "God hears us?" I told him he absolutely does and to never doubt it. I think he may have been posing this as a sentence to me. Read on.

As I said everything seemed to be related to the Gospel. We saw home videos from 2 years ago and I saw how I treated my husband before he strayed. I was SO ashamed. I know my actions did not justify his but I understood more why he reacted as he had. I felt his sorrow in having reacted that way as well. I saw myself grow up on that film! It wasn't just Hannah growing physically. I was a completely different person--a total nag. Life sucked and I didn't care to say it. It was terrible but also terribly awesome. Today the pain of having 2 children rather than the 4 I wanted was taken away. I'm ready to lose my uterus. Christ showed me my hands are overflowing and I'll receive as many blessings as that family that has 17 children. Shawn made the right decision when Hannah was 6 weeks old though it wasn't for the reason he thought, I don't think.

I started thinking maybe I was dying and seeing my "life review" as the new-agers call it. The emotions of others were SO strong. As I said, I connected on a level with the kids that I never have before. I saw their need for a mom and felt Christ telling me "Andrea, quit your worrying about not being here for them. They need you." I have been studying the LDS faith for a while now and while not all of what I felt today clicked and made sense something did. I felt that these kids had a thinner veil over their eyes than I did. I felt so many emotions today I was convinced I was dying or going crazy. I kept asking Shawn "Am I nuts?" I think he thought I was going that way!

Today the kids showed me they still need me so I need to quit napping all the time, playing arcade games, reading books, and be more engaged. Christ told my heart that I have a responsibility to make good on what I said years ago and keep that veil thin for them so they can still see Christ there when they are older and ask him into their hearts. Their dependance on me while I was feeling Christ's love and showing it showed ME that I still have purpose--this one! Forget that stupid doctor saying "we'll try to keep you alive" this past week. I will be alive. I'm going to live to see my babies come to Christ on their own free will. I'm 110% certain of that!

I have never, ever had a day like today. At first I thought, maybe today was my salvation day? Maybe the Mormons were actually right about one other thing--maybe I had never completely felt the gift of the Holy Spirit but had felt its power? Today I got my answer in regard to their church and as sad as some of my friends will be to read it the answer I received isn't that the church is the complete truth but that it has truthful components as does the Baptist church. I know in my heart after today that anyone who needs revelation will receive it and that we don't need anyone to tell us what it means. Christ himself does through the Holy Spirit!

I realize today that with those dreams I had several weeks back and with the events of this day that God was preparing me to receive answers I needed to hear. He couldn't give it to me all at once or I would have went insane. He gave me just enough to leave me completely fulfilled and at a place I have never been in my life. I don't know if I was saved today. I don't know if what I felt before was just an emotional response and fear of Hell. All I know is that everything is still a-ok even 5 years after getting pregnant with Owen. Yes I have sinned. I felt that sadness today but I also felt utter forgiveness and a love that I can't put into words.

Well, my brain is ready to begin the Sabbath and get a rest lol. I have never been so completely involved with life like I was today. I had been wondering just how involved Christ is with each of us personally and today he showed me. Some things haven't changed--I still don't want his job. My soul isn't that strong but I do want to represent him for my kids, for my husband, and for my friends. So, it's time to put the cancer/Cowden's/money/petty worries to rest. I had thought about writing a book about my experiences before but didn't feel like the events were enough in themselves. I want to write about growing spiritually through pain. Today I told God I will replace a part of my arcade, reading, etc time and begin this process. I'm ready!

I'm posting this for me in case the veil starts to thicken again as I'm sure it will and I'm posting this for my friends who cared enough to pray for me over these past few months and weeks. Yesterday I thought "God, I hope what you have been doing is breaking me down to build me back up again." Today he told me "You finally got the answer right."

Now I know that my 3.9GPA in college is NOT my greatest accomplishment.

Today is.

Friday, July 25, 2008

I told myself

I would get back and finish my health story but things have been crazy.

I just realized that those who have read this probably think I am a stoner what with the title and all. I have spent so much of my life laying in the back seat of cars staring up at the sky on the way home from doctor appointments and hospitalizations. Two days ago was my geneticist appointment. The clouds weren't so poofy. More thin and storm like. Should have seen it as an omen.

One day it will happen. I will have had as many surgeries as I am years old because I have another one being brought on. I will be having my uterus removed soon. ---Sigh--- I know things could be worse but sometimes I feel so much like a lab rat.

We found out that because Hannah is on the autism spectrum her odds of having Cowden's have jumped into the almost certainty range. I feel just like I thought I would. Guilty. When we were trying to have a second child, I knew there was a chance I had Cowden's. I didn't know with Owen but with Hannah, I knew. I weighed the odds then and asked myself if I had my life to live over would I do it again and answered yes. There's been a lot of pain --sure but all total it has made me who I am. I don't know that I would have a relationship with the Lord if I had been healthy. I remember having a break-up occur because I told my fiancee that if I knew my child would have to go through what I have been through I would still have the child. He called me selfish.

Am I?

Maybe I don't want an answer to that.

I once had a dream I was an old woman and Hannah was with me in the doctor's office. It wasn't clear who we were there for. Maybe God was telling me something? I hope not because in the dream I asked about Owen and it was clear he was deceased but had left me 3 beautiful blonde haired grandaughters. I woke up extremely sad because it was impressed on me that he had died not long in time from where we were in the dream. Thankfully it was just a dream though I would love to have 3 grandaughters some day. I once dreamed of a grandson--Hannah's son and he was a surgeon of all things. I have crazy dreams.

Like the one I had back in 1992 before I knew I relapsed. I had a dream that I was at my old school but the lighting was in different colors. It was impressed on me that I had to get to Memphis to St Jude before the big New Madrid earthquake happened. I dreamed of getting underneath a cushioned couch and of living through the earthquake but being extremely wounded. Earthquakes are setbacks and St Jude--cancer relapse was a definite setback.

The kicker? I had never been in the new section of St Jude before and had no idea what it looked like. In those days treatment was in the Research tower and in my dream I got under a couch just like one in the lobby and looked up on a glass ceiling--just like in that lobby.

Before Shawn and I were engaged, I had a dream of a brown haired little girl who looked a whole lot like him. She was in pigtails. For years I wanted to give my daughter the name Kennedy. My cousin named her daughter that as a middle name but at this time THAT child hadn't been conceived yet. I asked the little girl if I named her Kennedy and she laughed at me saying it was a silly name and no that wasn't her name. Then I asked her if she was my first child and woke up with the year 2003 on my mind. That was when Owen was born. Also when we were trying to get pregnant the second time, the last month that was unsuccessful didn't bring the usual tears and sadness. Ever since that dream July 2005 had been impressed on me as being important. Hannah was born on July 1st.

I told Shawn over and over at the time when we were engaged that we would have a little boy who looked like me and a little girl who looked like him. I repeated myself because the feeling was SO strong. We have Owen who looks like a mini-me and Hannah who looks like a mini-Shawn. Was God telling me something? Maybe not to worry so much that I wouldn't be a mom? I was suicidal at the point when Owen was conceived due to wanting a child so strongly and hating myself and my body for not creating one.

Then I have had dreams of my grandma's old home and of my eyeball popping out and mom telling me to put it in the fridge too LOL Ah the human mind is a bizarre thing.

Wednesday, July 9, 2008

Fewer clouds today

The last time I posted I was truly at the saddest point I have been in a long time. Today I decided to read my emails and go to the websites I visit every week and read what was said if anything. The comments cheered me up and an email from a friend said something that should have been so obvious to me.

For the past several years of my life I have been attacked physically with the cancers and cancer scares, emotionally with a husband who cheated, financially with not being able to pay medical bills or even for food at times. Truly before this period, I felt like I was on top of the world with my faith. Normally I would be dying for a shot of some kind of benzo to calm me down just thinking of bills but lately it hadn't been that way.

God isn't the author of fear--someone else is and that thing attackimg my faith isn't going to take it from me. He can have everything else as much as I would hate to give it up but faith is what sustains me.

I love Casting Crowns. I was feeling down even before reading the email when I decided to get in the car and visit my dad since he turned 62 today. Who am I? was what came on when I got in the car. I thought--that's right, who am I to question God? Things are going to be ok and I will get back to blogging about my past when I have more time and am able.

Sunday, July 6, 2008

Blog about nothing, or is it?

I'm feeling extremely down today. Even though the cancer in my breast turned out to be in situ, I have still felt down since it happened. Too many changes and too quickly. I've found my mind even going in the direction that there may not be a God and I hate myself for it. I hate myself for worrying away at least half of my life for no reason. I guess I thought I had control by worrying. I didn't then and I don't now and it's been a wake up call. The adversary has been putting into my head "what if there is no God and when you die that's just it?" I hate these thoughts. Despise them. I wish I could get them out of my head. Now with a new lump acting weird it has me frantic. What if this life is all there is?

Emotional support is almost impossible to come by as well. Shawn is doing ok but other places are lacking. Financially we can't be much more strapped than we are. The in-laws are remodeling the house because our heating bills last winter were $500 and there was no insulation at all in any room except for the one they added on later. My parents saw them helping and even though I told them we weren't paying for it they somehow think we magically have the $60 I owe them in meds that were charged. They can't even write that off yet the doctor's office out here wrote off $300. They can also pay my sister's car payment when she's in need and my brother's insurance. Now I found out we are responsible for an additional $500 bill and I don't know where it will come from. By late month we are near starving and sadly it isn't an understatement. Food stamps take into account only income not $70 a trip Little Rock visits every 2-3 weeks for healthcare so we have $40 in help that doesn't even buy basics. I'm grateful for having that and realize no one is obligated to give us anything but I'm worried. I'm petrified.

I thought of the widow casting her last mite today at church and gave all the money I have left for the month. It was probably stupid but I felt called to and I know when I haven't done it in the past we have wound up with bills for more than four times what I gave. So, I did. I hate that I gave in hopes of God seeing my trust and rewarding by letting this get taken care of. I wanted to give with a cheerful heart expecting nothing in return. I hate myself for not being able to do that and now if nothing comes in return well, we will cross that bridge.

I went down to the altar to pray today. I have only been there 3 times. One was salvation/baptism, the other was to join the church, and today was because I'm in an extremely dark period and my parents can't even hand me a flashlight.