The Strangers Who Become Our Friends

The day after expansions, I literally want to slap someone...namely Dr PK. Good thing I am not seeing him for another 2 weeks. My breasts hurt so bad, this last expansion was the most we have ever tried and I am paying for it now. I told Haleigh today it feels like it did right after I had my surgery, they (boobs) ache and I cannot get any relief, when I cough they ache, when I breath they ache, when I move on the sofa they ache, I can't turn over in the bed because they are constantly reminding me of the VILLAIN. Last night I took 2 vicodine, 2 muscle relaxers and a Atavan before I headed off to bed around 1am. I could not sleep, I got up came down stairs took a warm bath, listened to some music and tried to get my mind in the right place. However, nothing I did worked, my mind wondered and raced, you would think with that much pain meds in my body I would be knocked out. I got on the internet and did some research, looked on FB to see if anyone was out there, by now it was about 3:30am not one of my friends was awake WHAT???? Around 4:30 I went into Blakes room and quietly snuck under the covers hoping if I was really soft and quiet it would work......how dumb is that? I listened to his clock tick tock, tick tock staring at the ceiling of darkness until Eric came in the room around 8am. Then I got up and was totally awake and ready for my day.....do you think I will sleep tonight? I hope so, if not I just might be calling someone, one of you, at the wee early morning hours, just for a little chat....
Ok so the highlight of my day today was from a woman I have never met or seen before in my life. Saturday I headed over to Dillard's to pick up some Origins Grapefruit Bath Wash and body Souffle, the sales lady talked me into trying this bath soothing stuff for aromatherapy, but Saturday night I was throwing up from the smell of it (I think because of chemo) they also gave me the wrong package and I did not get any of what I went to Dillard's for in the 1st place, today I went back to exchange it. I was explaining to the sales lady about how sick it made me, she was so surprised, she says everyone loves it. When I explained also to her that I have the VILLAIN inside me and I am going through chemo therapy, she smiled and said "I'm sorry this happened to you, let me see what we can do to exchange anything you want" So we rectified it all and when she was done ringing me up and finishing the exchange she looked me in the eye and said "what is your name?" I told her Monya she said "I am going to pray for you" I could feel this sincerity in her voice and in her beautiful latino face, something was different about this lady, I could feel it.
She had on a necklace, a picture of a young boy and I asked her who it was, she said
"this is my son, he died 2 months ago" I asked her how she said "He was diagnosed with the VILLAIN one year ago, it attacked his legs first, his bout with chemo was successfull for the 1st few months, then he became immuned to all they tried and he died at age 11" my eyes were full of tears and we shared a hug, she said "when I say I will pray for you, I will, I pray the Lord to take away your pain and I ask you to please come visit me again"
So today I complain about not sleeping, about my aches and it seems to not be as important anymore, life could always be worse, I could NOT have my life. I hope everyone I know will read this and find something in their life to be grateful for, just for today be happy about something, look forward in life with optimism, knowing that you are loved and appreciated by ME!!

POPCORN

This morning I went to see Dr. PK (Peter Kreymerman) I am realizing what a special blessing my doctors are in my life. Every doctor I have been referred to has been a tender mercy in my life.
My neighbor Pam Jerome found out about my VILLAIN and emailed me about a friend of hers who lives in Indiana who recently found out about her VILLAIN, she asked if it would be OK for Sandi to contact me. We have been corresponding through email and when I told her about DR. PK she made an appointment at MAYO and flew out to see Dr. PK last week. I told Dr. PK today that I deserve some referral money from him, he agreed.... and said he would see what he can do. BTW, Sandi is scheduled for surgery in a couple of weeks ...... at the MAYO.....with Dr.PK....good luck to her she is in the best of hands.
I do love to see Doctor Pk we have a fun banter going every time I go, yet he is serious when I need him to be. I think I am ALMOST crossing a line of STALKER PATIENT He asked me today if my hair was a wig? "WHAT??? Are you kidding me right now?" was my reply. He just laughs at me, should I be worried? Do most doctors laugh with their patients? Not any that I've ever had...and notice I said laugh WITH
One of the things I love the most about MAYO is the POPCORN at the Phoenix campus. When I was in the hospital Eric had popcorn everyday. I introduced Tamy to the POPCORN...she loves it and so do I, its our treat after expansions with PK. We really loaded up today, I wanted to give Eric a treat when he got home so I brought some home to him. My life is full of wonderful tender mercies, is it ok that POPCORN from Mayo is one of them?

Another dreaded day in my Journey

Haleigh, Kayla, Sonya, Jenny, Kara and Tamy taking the picture

I knew this day was coming but truly have been filing it away, hoping to never have to look at it. Not only did I look at it today I faced it head on.
The fear of losing my hair has been lingering in my mind and I am always able to push it away with the distraction of Kaitlyn's wedding. Over the past month or so my sweet husband has been trying to tactfully bring it up and discuss it, but I have not been open to that discussion, pretty much cutting him off at the knees when he brings it up. My good friend and hairdresser Kara Ellingson brought it up to me, and we made the appointment for yesterday November 20th at 3:00 pm.
All week I have been extremely sick and not thinking about my hair. The side effects of chemo therapy have hit me like a brick, however, I also know that the chemo is what is going to save me.
I had my support system with me, my sister Sonya, daughters Kayla and Haleigh, and friends Jenny Ruttinger and Tamy Scheurn, I wished that Kaitlyn, (on her honeymoon...fun) Kris (sister in Louisiana) and Mysti Brown (good friend out of town) could of been with me also, they were with me in spirit I'm sure.
My body is so weak and I hope my spirit will not give out on me during this process. I want to kneel and pray before I leave the house but I am so angry right now, cutting my hair is not my choice, once again the VILLAIN is in control. I am feeling very vulnerable, the prayer that is my heart is starting to bubble up to the tears in my eyes. Hoping and wanting this to go away, but we drive closer and closer to our destination, my heart is beating a million miles a minute. Jenny is talking to me and I am trying to keep up with the conversation, I love her so much and don't want to be rude, it sounds strange but I'm thinking about my Aunt Pam making chocolate and coconut pies for Thanksgiving, Sonya told me yesterday that she has Grandma Belshe's recipe and likes to make those....talk about a distraction, I enjoyed that one for a few minutes. We are on Gilbert Road, crossing Brown as I tell Jenny to turn left on Gary and Kara's house is the 1st on the left. Funny I have been getting my hair cut by Kara for about 13 years this was the 1st time I ever resented coming to see her.
We all walked into the salon and I sat in the chair feeling like I was going to the electric chair. I love Kara, she started to talk to me about some options and I began to cry, I could see the tears welling up in her eyes also and I felt so bad, I don't want to make anyone cry, I think it was too late they were all crying. I wanted to grab them all and say "sorry, I'm so sorry you are enduring this with me, please help me make this decision" the options were:
1. cut it short and have fun with a different style for a week or two (and maybe the transition will be easier when it all falls out)
2. Shave it off, start wearing a scarf or wig, the transition is obvious
I decided along time ago I wanted to keep my hair and try and sew it on Velcro strips, my thought is that maybe I can Velcro some of my own pieces of hair into some hats or beanies.
My mind is so swamped right now it's hard for me to make the decision, so WE as a group made the decision to cut it short and enjoy it for a couple of weeks.
As Kara pigtailed it and prepared me for the dramatic cut, I stared at myself in her mirror wondering how I got here, how did this happen? When did I lose control of so much of my own decisions? (back to that later)
The 1st cut through the pigtail echoed loud in my ear, I will never, ever forget that sound of the hair being cut. My crying became louder and louder with every cut of the scissors, the 2nd one was just as bad and now it's done, Tamy is holding my hair in her hands, carefully placing it in a plastic bag as not to lose one piece.
Kara faces my chair away from the mirror and begins to cut and shape it into a masterpiece only she could of accomplished. Thank You!
On my drive home I wonder "what will Eric think?" I noticed I had about 15 missed calls from him, when I got home he hugged me and told me I was beautiful, he told me everything I needed to hear and then more.
I have had a day now to get a grip, I am so thankful for my sisters who build me up when I need an extra boost I love them so much, our lives have been full of trial and testing but through it all we have each other, I am forever grateful to good friends who see only the good in others, and who I am honored to be with and count among Eternal Friends. My daughters are my strength, and will never know how much a mother loves until they have their own children someday....soon for Kayla. My son who builds my testimony everyday as I pray for him and ask he Lord to bless and watch over him. Lastly I love my husband who is MY ROCK, he gives me much more than I ever give to him and he knows what I am thinking before I think it.(kind of scary for him I'm sure)
I want to go back to something I was feeling yesterday. I realize that being sad, mad, depressed, upset and all the emotions that come with dealing in trials is normal, however, I think that Satan wants us to feel vulnerable, he wants us to feel like we are not in control of our own destiny or life. I was studying recently and realized how Satan wants us to run and hide when things go wrong, he wants us to hide ourselves and bring others down with us, kind of like misery loves company when we allow ourselves to be in his power it seems we become unhappy and controlled. I am so happy that I know the good from the evil and I am able to pull myself out when I feel the weight of the world coming down on me.

Fighting the VILLAIN

OK so lots of people are asking about the chemo treatments and how they went for me, I am sorry I cannot get back to all of you personally, but I just took some meds so for a few minutes I can give you an update. BEWARE:if you don't want to hear the truth do not read this. I am using this blog as a journal and I apologize if I offend anyone.
Chemo was actually not too bad, I had some distractions if you read my last blog I imagined a battle between the chemo and the VILLAIN. The actual chemo med is bright red and comes out of my body the same bright red. I was told not to let anyone use the same bathroom as me, because it is so toxic, I need to flush twice. Monday night I felt very tired and weak, and urinated red, I never knew pee could look so pretty !!! OK, sorry but that is they only funny thing about this.
Tuesday, I went in for a neulasta shot, this shot is to keep the white blood cells growing. When a person goes through chemo it takes all your cells and kills them including the good ones that you need. So the "day after shot" helps to replace them. They told me that my bones and muscles may ache, but that some people do not experience it at all, I knew when I left the MAYO that I would be the one who would not feel the pain of the bones and muscles...again I am referring back to my hard cardio workouts.....WRONG...this morning I woke up with aches and pains that I never have felt before. Every muscle in my body hurts, I take the meds and it goes away but then I sleep. Since there are only 3 bathrooms in the house, I get my private one (Blake's) I spent a lot of time in the private bathroom today. I do not want to eat anything, Tamy came over today and brought me a smoothie from Tropical Smoothie, but it tasted like metal or something, so then for lunch she gave me some rice with veggies and chicken so I can get some protein that was good. However, did not last in my system, everything is coming out, purging from top to bottom. I spent the entire day on the sofa sleeping from the meds, or puking and having diarrhea. I love Tamy Scheurn. She just layed on the sofa with me, blogging in her online blog journal and watching me sleep. When I woke up the last time, Kayla and Jeremy were here and Tamy was gone. She informed them about my meds and told Kayla to get me some pasta for dinner. I ate a few bites and so far so good.
I am ticked off at all the times I heard from people that chemo would be a breeze, it is different for everyone, I am not one of the lucky ones it looks like.
However, I know this is the beginning of the end, I am going to get through this, I am going to fully heal and I am going to never take my life or anyone in it again. I have the highest respect and love for those who have gone through this before, and for the people who are the caregivers of VILLAIN patients. I don't think people realize how hard it is on them, my family has to watch and listen to me sick and cannot do a thing about it, I love you all so much, and I am sorry you are experiencing pain in your life also as you watch this VILLAIN fight with me.

1st Day of Chemo

The bright pink snuggie Tamy bought for me to keep me warm during chemo

Blogging as the POISON enters my veins

Port Accessed

This is Heather My Nurse, cutie patootie nice girl

This is Tamy my chemo buddy today...I love this girl
Today is Monday November 16th, I woke up feeling OK not quite awake and ready for today. When Tamy arrived to pick me up, I started to get anxiety, the tears would not stop as my husband hugged me and reassured me that I was going to be OK. For some reason those words "you will be OK" are not helping me today. I am so mad, throwing everything in purse as hard as I can, I kept saying over and over "I don't want to go, I just don't want to do this" tears rolling down my face, "I am serious I don't want to go today" With every hesitant step I take towards the car I feel my body, heart and mind fighting me. Tamy says a prayer when we get in the car, it helps me to feel some bit of relief.
We are introduced to our chemo suite, where we will be sitting for the day. Heather is my nurse, she comes in to access my port, "take a deep breath when I count to 3"
"1,2,3" the needle goes in and the port is now accessed. Yes, there was some slight pain but nothing more than a needle stick. Now comes the meds, Heather explains each chemo medicine that they will be using today. The 1st med that goes into the IV is bright red and very toxic, I can feel it's warm poison spread throughout my body. I am imagining the men I love in my life entering the PORT and together searching for the VILLAIN to kill. Eric enters first he is cautious and reserved as he makes sure the coast is clear, he then motions for Blake, Jeremy and Brian to enter and together they fight the battle of their lives, knowing its going to be a long day and the war will not be won for months. Today I start the beginning of a long journey towards winning the battle, it's hard and I hate every step of it.

Magical Reception

Thank You, Thank You is all I can say to all the people who graciously gave of their time to help out with Kaitlyn's wedding reception. I wanted this night to be perfect for Kaitlyn and Brian, I wanted Brian's family to come in to town and enjoy their time before, during and after their son's wedding. Eric and I love the Wright family, they are wonderful people who we will be life long friends with, (especially since we will be sharing grand kids someday) I have always told my girls that I hope they will marry someone as wonderful as their father, and so far Kayla has married Jeremy Roussell who we absolutely love, he brings joy and laughter not only to Kayla but to the rest of our family. Kaitlyn is now married to Brian Wright, he is equally as wonderful as Jeremy. He sees the good in people, he works hard and is totally in love with Kaitlyn. I am grateful to the Wrights for raising such a respectful and loving son, getting to know his parents I can see that he took so many traits and talents from both Dee Dee and Shane. (his parents) I spent so much time before my 1st surgery getting the wedding pulled together, there was not much to do until this last week and it was a great distraction for me, another one of those tender mercies the Lord placed in my life to bless me and help me to deal with what is happening in my life. Kaitlyn loved her reception, she wanted to have NO line and to be able to dance and eat some of the food, so when I saw they were being overwhelmed with people, I went and took them over to the food table and told them to sit down and eat, they did and they loved it. Next I wanted them to dance, and dance they did, they told me this morning it was the best "party of 2009" I am so happy they had a good time. One of my goals of last night was to not think about the VILLAIN, although there were a few people who asked about it, I tried really hard to divert the conversation, I was pleased with the distraction and I thought I did really well. I am grateful for the beautiful night we enjoyed, but it's kind of like Christmas, you work so hard for a magical day and it's over in an instant. Brian said over and over again that the backyard looked "magical" and he was right it was magical and we loved it and will have the memory of it for a long, long time.

NO VILLAIN ZONE

Tonight I am alone, everyone is asleep but me. I have too much on my mind to relax enough to get to sleep. My breasts are aching, the pain never goes away yet they are numb to the touch. When I drink something cold I feel it going down my throat and then the cold sensation penetrates the holes where my breasts used to be.
My mind is wondering in all directions, the wedding, the baby, the chemo. I run my hand across my chest and feel the PORT, the PORT that will feed the poison into my body. I start to cry, knowing I cannot control any of this, how did this happen to me? I have always been the physically fit, healthy one. The emotional part of this journey is getting to me. One year ago I remember dealing with a much different trial, my son was struggling with his testimony and I was aching for him, now the strength of his testimony is getting me through. Every Thursday I sit by my computer waiting for his email, waiting to hear how he is doing, and week after week I see that the Lord is blessing him, and those emails get me through until the next week. I have so much to be grateful for, how can I complain about this trial? The blessings that come from a child serving a mission are starting to unfold in front of my eyes and I never thought it would ever happen for us. Oh how I know the Lord is aware of me and wants what is best for me, but I am human and still feel the fear of this journey also starting to unfold before my eyes.
Sometimes when people talk to me I don't hear them, the words are coming out of their mouth but I process nothing. I wonder if I will ever be "Normal" again? I continue to pray for strength to get through this, but continually doubt myself, am I strong enough? I am so scared, but I'm not sure of what.
This is the week of Kaitlyn's wedding and I want it to be the happiest night of her life. We have a lot to do this week to prepare for the reception, I'm hoping it will be enough to keep my mind off of the VILLAIN. I want the reception to be a VILLAIN free night, no VILLAIN talk. I know I have a long road in front me, but Saturday Night November 14th is Kaitlyn's night, I want to enjoy it.

Having Fun With Dr. Peter Kreymerman

One of my favorite doctors Dr. PK and his assistant Heather

One thing I've learned is that you need to have a sense of humor, even in the rough times it helps just to laugh, find some humor in things that make you say "huh?"
I had an appointment yesterday for an expansion with my plastics doc (I call him Dr. PK.) It has been a really tough week for me emotionally and I knew going to see Dr. Kreymerman that I was going to have some pain with the expansions, so I decided to give him and I a laugh....well I hoped he would laugh and not think I was some kind of creepy weird patient.
When I got in the exam room the nurse asked me to put on the gown, under the gown I put on the rhinestone bra from the previous post I talked about. When Dr. Pk came in he asked how I was doing I told him it had been a tough week for me and that knowing the chemo is coming soon I was having some anxiety. We discussed that for a moment, and he told me he was sorry for what I was going through, then I told him I had received one of the itemized bills from the hospital, he looked at me kind of puzzled... (like ok why are you telling me this?) I said "before I take off my robe I want to tell you something" then his interest was perked up I could tell he was kinda worried about what was going to happen when I took off the robe....
I proceeded to tell him that I could not believe that the ugly white bra he put on me after surgery was over $200 dollars, He said "oh don't you have insurance?" I said "yes, but still $200+ for that ugly bra? are you kidding me?" He said " I know the hospital probably only pays $10 for them" then I said "well I think if they are going to charge that much for those bras, they should be RUNWAY READY" he looked at me and said "oh no what did you do?" I took off my robe and he started to laugh, he said he had to get his assistant Heather in the office to see this. It was so fun, just for a couple of minutes it was fun to not think about the VILLAIN and just laugh at something silly.

The Last Hair Appointment

Today I went to get my hair done for the last time in awhile. Kara Ellingson has been cutting my hair for over 10 years now, and I love her. We have become good friends, she has a wonderful husband and family.
I sat down in her chair like I always do, she put the breast cancer hair drape on me, started to comb out my hair and I began to cry. I don't want this to be the last time I get my hair done for awhile. Not only do I look forward to visiting with Kara, I love to get my hair done. I just kept thinking "why is this happening to me"
I was having this outer body thing going on, I tried so hard to get it under control, and I eventually did, but today I realized it is coming too fast, I can't stop it, I have no control. Even as I write this I am crying, I told Tamy today my hair is light and looks beautiful, but my heart is heavy, I am hurting inside and don't know how to control it. I miss my son, I miss working out everyday, I miss laughing out loud, I miss being normal.
This was definitely a day when I felt alone and needed the Lord to take it away. I came home and went to my room knelt down and asked the Lord to help me today. This is a hard journey, I try so hard to be strong and to rely on the Lord, I know he will comfort me and lift me when I need it, but sometimes, some days, it just STINKS.

Find Some Humor In It

I just started getting the itemized bills from when I was in the Hospital. One of the items struck me very funny. When I got out of surgery the doctors put this white ugly bra on me, huge Velcro down the front, something you might see at a dollar store. Well that ugly bra costs me over $200. I was so shocked by that and even more shocked when I realized that they threw the 1st bra away during my 2nd surgery and gave me a "fresh" one. Trying to find some humor in this, I decided to rhinestone it, totally bling it out, and when I go see Doctor Kreymerman this Friday I am going to have it under my gown and tell him that if the Hospital is going to charge VILLAIN patients $200+ for a bra then it should be "runway ready" Tamy, Kayla and I had alot of fun doing that on Saturday, and after Tamy and I went to our class last week and found out how to make turbans out of plain t-shirts she made me 3 and rhinestoned them also. She definitely needs to show the ladies who teach at the American Caner Society how its done, because the one they made were really kinda lame. Thanks Tamy and Kayla, it was so fun. I love you both !!