2nd Round of Chemo

The Red Dragon being inserted into my Port


Ginger and I



I literally just walked in the door from my 2nd chemo treatment and thought I better write before I get sick. Yesterday was an aweful day, I threw up all day long, I think my nerves were getting the best of me. Knowing what I was facing today makes me anxious and even the best meds were not helping me yesterday. Plus I have all these pictures I want to post about my wonderful Thanksgiving, however I think I will post this one first then the Thanksgiving one later when I feel better. My appointment was at 10:10 am, we checked in to see the PA Margot Henderson and she did not get into the room until about an hour later, Tamy and I didn't mind we were laughing and carrying on like little girls. When she did come in she said all my labs looked really good after the 1st treatment, I'm happy about that. When she told me I should not be flossing my teeth anymore, I was not happy, I told her I would take my chances. If you know me well you know I carry floss in my purse I have it in the kitchen, next to my bed, I floss my teeth all the time at least after each meal, I told her I would try to knock it down to once a day. She told me some other things I should not be doing, but I am not going to blog them, too many of you will be looking out for them ha ha. I can't give up everything, I'm like an addict, cold turkey will not work for me, baby steps, baby steps....
Margot also told me I was supposed to bring the Emend meds with me to every chemo appointment, I told her on the script it said only to the 1st chemo appointment, she looked it up and sure enough that is what it said, but it was a mistake, she said you have to have that medicine to do chemo or you will get really sick....at this point I'm thinking "how much more sick can I get?" So today she wrote me scripts for 8 meds one being the Emend. My chemo treatment starts at 12:30 but by the time we got out of Margot is was 12:15 and I needed to go to the Mayo Pharmacy. Mayo Pharmacy said that my insurance would not approve it so it would cost $400 (for 3 pills), I said "uh I just had this filled 2 weeks ago and it was only $50" they said
"your insurance is not showing you ever had Emend" I called Walgreens sure enough they had it and said they would have it ready for a refill in one hour. This was a nightmare....I will never use Mayo Pharmay again, this is the 2nd time we have had a problem with them....love Mayo.....don't love their Pharmacy.
Now I am off to get the red dragon poured into my veins. Today my nurse is Ginger, so sweet and she appreciated our humor, I tried so hard today to think of Blake and his mission and all the blessings I have in my life, it helped for the 1st hour, then I got worn down, today the red dragon hit my organs hard and it was cold. I imagined again my heros, Blake, Eric, Brian and Jeremy going in fully loaded and ready to fight. During chemo it's difficult for me to concentrate, my mind is wondering all over the place, I turned on the TV to distract me, no luck today I guess I am going to feel every drip going into my body, but I know my boys are fighting for me, it's a long hard battle and they are with me every step of the way.
During the drip, I get a text from my Sister Sonya, "I Love You, I'm here for you"
My sisters are incredible and I love them so much, the support I get from them comes from the heart, and is sincere in everyway. I get a call from Eric, and Haleigh "I love you" from Kayla a text "I Love You" I need them to know that is the best distraction EVER and "I LOVE YOU TOO" I often think about my family and all they are going through, it is hard on them and I feel so bad, I say "I'm sorry" to Eric all the time and know that his love is also sincere and unconditional. On the way home, my hair is falling out all over the place, I say sorry to Tamy for getting it in the car, she says "I want it in my car" ok seriously? Who says that? Tamy Scheurn says stuff like that, she loves me and has been a great strength to me through all of this, especially when my family cannot always physically be there for appointments. I love Tamy and know that we have stayed friends over the years for a reason, now is the time we lean on eachother unconditionally showing compassion, building eachother up when its needed.
Tonight I am getting Chicken Noodle Soup delivered from Cheri Toolson, she claims its the best ever for chemo patients, I don't know Cindy Packard made me some chicken noodle soup last week that I would die for. I am so lucky to have such great women in my life and I do not take one minute of life for granted, I am grateful everyday for the new and old friends I have in my life, and know my life is forever changed, no looking back, I tell my kids all the time "it's not about where you have been but about where you are going" for me It is going to be about where I have been and what I learned from it.

I Can't Stop Smiling

I have to say yesterday and today have been the BEST DAYS I have had in a very long time....can you see me happy right now? you should picture me dancing throughout my house with the biggest happiest smile on my face...why you ask? Well let me tell you....last night I was working on my blog post while Eric was Home Teaching, he came barrelling into the house exuberantly yelling "Monya, Monya, guess who Brother Powell just talked to?" I'm thinking, WOW he is really excited who could it be SANTA maybe? "I have no idea" before I could even finish the sentence Eric out of breath says "BLAKE !!!" "SHUT UP?" was all I could say....Blake got transferred from the MTC yesterday and out to Santiago, to start his life in the field. The man who picked him up and transferred him to his new home is Brother Powells brother, for those of you who don't know Khyl Powell he is in our ward, for those of you who are not LDS basically he goes to church with Eric and I and we are friends with he and his wife. When he picked up Blake he asked where he was from and when Blake told him Gilbert Arizona, he dialed a phone number on his cell phone handed it to Blake and told him to talk..... this is music to my ears, my son is happy and alive and said "make sure you tell my mom and dad I LOVE THEM" I slept good last night, in Blakes bed..... oh I love that boy!!!
Ok so today, I was minding my own business driving down the road a phone call comes on my cell from area code (703) .... whoa I know what all of you are thinking "do I answer it or not?" you know most of you wouldn't, because I never do unless I know who it is.... boy am I glad I did this is the conversation:
Me: Hello
HIM: Hello may I speak with Sister Williams
Me: this is her
HIM: this is Elder Rolf, I served with your son in the MTC
ME: Which MTC, Provo or DR?
Elder Rolf: Both
ME: Where are you now?
Elder: I am home now, your son is the reason I came home....
ME: Uh..... Ok.....
Elder: Don't worry he didn't do anything wrong, in fact just the opposite, he is the most amazing missionary I have ever met...I came home because I knew if I ever wanted to be an effective missionary like your son I needed to take care of a few things then head back out. I sat up with Elder Williams one night all night long he talked to me about things, he bore his testimony to me about the ATonement,the next day I went to see the President and now I am home and will be going back to the DR in January.
ME: I am so glad to hear that, I know you will be blessed for your faithfullness.
Elder: Do you have some time right now that I can tell you about your son?
ME: are you kidding me right now? I will stay on the phone all night long if I get to hear about how he is doing....talk to me...tell me about my missionary
Elder: (laughing) ok, well all the missionaries love him so much, and the leaders look up to him and he is well respected. He gave a devotional one morning, and there was not a dry eye his teaching is very effective.
ME: What did he talk about in his devotional?
Elder: He talked about his family, the love of his family...(ok now I am choking up)
he talked about his sisters, and he told us that you have cancer, how are you feeling? He prayed for you everyday and said that he has complete faith that you will be healed. After his devotional, he said that 3 other missionaries came up and said that their mothers had cancer also.
Me: OH Elder Rolf, you have no idea what this means to me, my heart is so full thank you so much for calling me ...
Elder: I waited to call because I was not sure how you were feeling, but tomorrow is Thanksgiving and I thought you would enjoy this information and it would give you something to be grateful for. Elder Williams told me that you call missionaries moms all the time and that you deserved for someone to call you at least once during his mission.
ME: Well, I do love to contact missionaries mothers and give them updates when I meet random missionaries in Mexico I get their home phone numbers and call moms, I love how happy it makes them feel, now I know how that feels. you are awesome and I know you will be a great missionary, please keep in contact with us.
Elder: I will and please tell Elder Williams I called you, I pray for you to get better and I know you will because your son KNOWS you will.
Me: Thanks again goodbye
Elder: goodbye
Seriously ???? I am on cloud 9 right now, and to top it off when I got home tonight, opened up my emails and 3 emails from none other than Elder Williams, his P-Day has changed to Wednesday..... he loves his mission !!!!
I'm not sure why the Lord loves me so much, but I am being blessed far more than I ever imagined I could be. These 2 days I will keep close to my heart and next week when I am enduring chemo again I will read this blog over and over again trying to re-live the joy I am feeling right now.

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 (blakes) I spent alot 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 Smootie, 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 reasurred 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 Kailtyn's weddng reception. I wanted this night to be perfect for Kaitlyn and Brian, I wanted Brians 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 grandkids 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 absolutly 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 devert 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 alot 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. PK 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 outloud, 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, somedays, 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 definetely 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 !!

So I Cried A River

Today I drove for the 1st time in over a month. I felt like a teenager who just got her drivers license for the 1st time. I met some friends at Paradise Bakery for lunch and it was nice to talk to them and see their happy faces. I workout with Cherie and Manami and consider them to be incredible women. When I left them today I was sad that I could not go with them to the gym and get back on the bike to cycle for an hour, but grateful that I am alive and that I have cycling to look forward to.
I am still not able to be away from home for a long period of time, however I love what little time I am able get out and enjoy a "normal" bit of life, without the VILLAIN lingering around like an unwanted guest in my body. Today was a beautiful day, finally a little winter comes to Arizona, I think it was only 55 degress when I went to lunch.
On my way home I stopped to get the mail. For me, there is nothing better than opening up the mailbox and seeing a letter addressed to Mami y Papi Williams from none other than my missionary son Elder Blake Williams. I could not get my car down the road and into the garage fast enough, I left everything in the car went in as fast as I possible could, crawled up on the sofa and read his letter like it was a romance novel. The 1st paragraph was in spanish....but I'm sure it was all good, as I read on I began to tear up I was holding onto the tears until I realized "I'm home alone, I can cry as loud or quiet as I want" so I cried a river. He explains in the letter that he loves everything, he loves the CCM, the language is so easy for him he is the only one who could bless the sacrament in spanish on Sunday, he loves the food, he loves the country and people, he loves to teach the gospel to random people on the street, and the best is that he WANTS to be obedient. I see all of these things, even the little ones, as Tender Mercies from the Lord.
The Lord is blessing him so much, my heart is so full and words cannot explain to anyone, not even my Heavenly Father how grateful I am. Just the mention of Blakes name makes me tear up, he is listening to the spirit and hopefully remembering the blessing he was given by Presdient Greer when he was set apart, part of the blessing promised Blake his mom would be alive when he gets home, that he would be able to share with me the wonderful stories and experiences he will have. The next 2 years will bring such light and strength not only to my son, but also to our family as we watch him grow and turn into a man. Oh how I look forward to the day when he will hug me again and tell me the stories of his mission. I am sure I will look back at this time in our lives and fondly remember with a tender soft heart how much we were blessed, the Church is true and the Gospel brings such happiness to families, even families who have to endure hard trials. Those trials are what build our character, they are a test of our faith in the Lords plan for us, do we trust him? I am so happy for Blake that he has found a place where he can feel protected, a place that allows him to build his faith, he is a strong person, that strength comes from turning everything over to the Lord and trusting him that on the days when he cannot find a way to move forward, he will lift him and carry him. WOW today was a good day, and tomorrow I will get an email, how lucky am I?

Feel Good, Look Better Class

The American Cancer Society offers free classes for VILLAIN patients, I decided this one sounded interesting so Tamy and I headed over to attend it tonight at the Banner Hospital on Dobson. It was a class on how to look good when you feel UGLY. They gave us all an enormous amount of make-up, moisturizers, lotions all donated from companies like Origins, Revlon, Aveda, Chanel, Estee Lauder, and so many more I can't think of. They showed us how to apply makeup, I actually don't wear alot of make-up, mostly because I have permanent eyeliner and eyebrows, my "get ready" time is 1/2 hour tops including my shower. So I went with the flow and did all the regimen they suggested. What I really wanted to learn was how to wrap the scarves, and I did.
There were 6 of us with the VILLAIN, most of them had already lost their hair. When Laura took off her bandana and announced that she had shaved her head just last night because it was falling out so badly, I was faced for the 1st time with the reality of what is about to happen to me. I started to have a panic attack, I looked at Tamy with the "get me out of here look" a shock of shear panic and fear ran through my body, but I concentrated on Tamy, she rubbed my leg to get me through it, and the tears went away along with the feeling of wanting to scream.
I remember asking Dr Northfelt how long it would take for my hair to fall out, he told me about 3 weeks after my 1st treatment,(which was exactly what it was for Laura) I will have had my 2nd treatment by then. So in less than a month I will have no hair. I told Tamy on the way home, I remember saying to someone once who was facing chemo "don't worry it will grow back" just so you know that is a stupid thing to say to a VILLAIN patient. Up to this point it has not bothered me when anyone has said that to me, but I think now that it is real I don't want to hear it. I am afraid I am looking forward to a mourning process, I also realize many people will say that is vain or that "it's just hair" but unless you go through it, it's hard to say how you would react. I thought the same thing when the doctor told me I would lose my hair "so what it's just hair" and I remember him telling me losing hair is sometimes the most devastating part for most women, I ignored it for so long because I have my hair, I wash it daily, I brush it, I blow dry it, I sometimes curl it, my girls style it for me, I can wear it up or down, it's here on my head and I like it. So what makes women incredibly attatched to their own hair? It for sure does not define a woman, but I have come to the conclusion, it is part of our femininity. We own it as woman, some like it short some like it long some like it spikey, some like it curled, some like it straight no matter what our choice is for style....it is our choice.....mine has been decided by the VILLAIN, well at least for a few months.

Chemo in the Classroom

OK so today I had to attend a chemo educational class that is required of all chemo patients before their 1st treatment. Eric, Tamy and I all attended.
What is ChemoTherapy?:
Chemo is: chemicals Therapy is: treatment
It is tailored for each patient based on the type of VILLAIN, stage of the VILLAIN, and the overall health of the patient.
It is most commonly given by mouth, injections, or IV infusion
I will be receiving the IV infusion every other week for 4 months, 4-5 hour infusions each time.
What Chemo Does:
Hopefully cures the patient completely of the VILLAIN
Controls tumor growth and the spread of the VILLAIN
Relieves VILLAIN symptoms
How Chemo Works:
It will destroy fast-growing VILLAIN cells
It also may affect fast growing healthy cells
Side Effects of Chemotherapy:
Different drugs have different side effects, but the drugs specifically for me will cause loss of hair, may effect the bone marrow, digestive tract and reproductive tract also may cause numbness in my hands and feet, shortness of breath, pale skin color, dizziness, fatigue, weakness, rapid heart rate, decreased Red Blood Cell counts, decreased Platelets which can cause nose bleeds, easy bruising, longer bleeding from a cut, pin-point or purple spots on the skin, bleeding gums. With decreased white blood cells I could get, fever, shaking and chills, cough or sore throat, pain urinating, flu symtoms or diarrhea.
I will be on several different meds to help with the side effects.
While I was in the classroom I could feel myself wanting to vomit, all this information is overwhelming. I look over at my husband and he too is affected by the info, he has huge tears in his eyes.
Just like alot of people, I have always had compassion for VILLAIN patients but never really researched or experienced it with anyone close to me. I am the type of person who will pray and fast for those who I know need the extra prayers, but I have a hard time talking to them, not knowing what to say is the challenge for me. I have noticed since I was diagnosed with the VILLAIN I'm much more open, I talk to people all the time at the Mayo Clinic, I ask them what type of cancer they have and let them know I care about what they are going through.
2 years ago a friend of mine passed away from The Breast VILLAIN, her husband has called me a couple times to see how I am doing. I told him yesterday when he called that I always felt so guilty because I did not call Jami during her treatments... I didn't know what to say. He said to me "now you do" so I guess this is something I have learned so far. I would know what to say now, I would know that a hug says it all sometimes, a smile tells me that you are thinking of me, and when you say "I'm praying for you" I know you are because I feel it.
I realize that the affects of the VILLAIN are different for everyone who has it, maybe some people don't want to talk about it...I do understand that feeling because I sometimes just want my life to be VILLAIN free, I want to be normal. Now I know that my life will never be normal again, for the rest of my life I will see an oncologist, the days of the "family doctor" are over, but everytime I see someone who has the VILLAIN my reaction will be so different than pre-VILLAIN life.

Dr. Northfelt My Oncologist

Today I met my oncologist for the 1st time, my incredible friend Tamy Scheurn went with me. She has been my friend for over 20 years, she has had a mastectomy, she has a port in her chest and she is a scrub nurse..... we get eachother....I Love Her! Eric could not be there because he had an important meeting. I was so glad that I took Tamy with me because she knew what to ask.
When he came in to talk to me I could feel of his compassion for his patients, but he also made me feel like I was his only patient. We talked for about 20 minutes asking and answering questions, he had a way of making me feel like none of mine or Tamy's questions were silly (like some Doctors do) in fact he loved that we asked the questions we did, and he was thrilled with Tamy coming. Although alot of what he had to say was not pleasant to listen to, he told me that my attitude is everything. my VILLAIN is in stage 3, some people who have stage 4 live 20-30 years after, and some who have stage 1 or 2 die because they give up and dont want to fight. I am a fighter and he could see that, he liked my attitude. I will be one of the survivors!!
He had to step out of the room to get the rest of the team of Dr.'s and PA's I would be working with over the next year. When he walked out I looked at Tamy and said "what do you think of him?" we both looked at eachother and said "I love him" at the same time. Tamy and I had tears in our eyes as we discussed how much compassion he showed toward me and my situation with the VILLAIN. When he came back in he introduced me to the team and they were all awesome. He then knelt down in front of me looked me straight in the eyes while softly touching my knee he said:

"when you go home tonight I want you to tell your family that I am the doctor who is going to get you through the next 40 years, not the next few months but in 40 years you will be alive and thriving because I am going to help you every step of the way"

I told him I was going to hold him to it and he gave me a huge hug. Then on his way out the door he hugged Tamy a little tighter and a little longer, he whispered in her ear "I'm glad you were here for Monya today, you had all the right questions"

We are starting Chemo on November 16th, 2 days after the wedding, he agreed that day is good so I can enjoy the wedding. I will then have chemo every other week for the next 4 months. Then radiation.

I Stand All Amazed

I have always found such comfort in the words of hymns. One of my favorite hymns is I Stand All Amazed. Yesterday my very good friend was baptized and Dina Rossell sang this song. I listened to the words with my heart wide open. Besides the fact that Dina could sing a commercial for toothpaste and bring you to tears with her beautiful voice, I was so touched by the spirit when she sang the 2nd verse:

I marvel, that he would descend from his throne divine to rescue a soul so rebellious and proud of mine, that he should extend his great love unto such as I, sufficient to own, to redeem, and to justify..oh it is wonderful that he should care for me enough to die for me.

We all sometime in our lives let pride get the best of us, or we become rebellious. Maybe we don't forgive when we know we can, or we want to be right at the expense of others, the Lord extends his love to each of us and although it is sometimes difficult to see through the dirty glasses on the end of our noses, he is there, always there, he does care for us and he did die for us.
I love Jenny, my good friend, she worked so hard for many many years to be able to be baptized. She was absolutely beautiful when she came up out of the water, I have always thought she was beautiful but yesterday the beauty was pure and angelic. Eric was who she asked to baptize her, what an honor for him. To feel of the spirit that was in the room was incredible, I don't think anyone who was there could deny that she was spiritually prepared which allowed the spirit to work as it should. I love that the Gospel of Jesus Christ allows us to have agency to choose what our lifes journey will be, and sometimes when we step away from the correct principles, let go of the rod, maybe for a litle while, maybe for a long while, the Lord forgives, he takes us in and enfolds us when we ask for his help. To see the ATonement work in our lives and in the lives of those who we love so much is a testimony to me that we need to forgive and accept others into our lives as the Lord does. I Love You Jenny, enjoy every second of what was once taken from you, now being full circle and embracing you as you start your new journey.

Blake calls from the Airport

I had a really hard time getting to sleep last night, I am experiencing some extremely sharp pain in my right breast when I breath in or turn over in my sleep, it is hard to explain the pain without saying it feels like a very sharp knife slicing down the middle of my breast, it takes the breath out of me and sometimes will last up to 30 seconds. It happened last night when I went to bed, I felt bad for Eric because he did not know what to do for me, and honestly there is nothing he can do, I have to work through it myself. Once I got myself up I was so afraid to lie down again, I went downstairs and sat up on the sofa to sleep. That did not work either, I finally got brave enough to try lying down again about 3:30 am.
I was awakened by a phone call from my son at 5:30 am, he is flying from Salt Lake City to the Dominican Republic today. I have never been so excited to get a phone call. We talked for about a half hour. He sounds amazingly good, I was impressed with his anticipation to get out into the mission field. The next 2 years are going to be filled with so many blessings, I look forward to seeing my son grow into a man and learn about life away from his family and friends.
Later today, I missed his call from Puerto Rico...I was bummed but really happy that I have his voice on my message machine to listen to when I need an extra push to get me through the day.

Learning about Lymphedema

Yesterday I went to my physical therapy appointment, it was insightful and I learned alot about how breast VILLAIN patients can get lymphodema. I asked what time frame I am looking at to expect it, if it is to come. I was told that as long as you don't have lymph nodes you can get it. So even if you are free from the VILLAIN for 20 years you can still get it, it actually has nothing to do with the VILLAIN, and there is not much you can do to prevent it, some people get it some people don't. I can start my exercises as soon as I get the last drain out.
Today, I went to see my oncology surgeon Dr. Pockji for the last time, she took out my drain and said everything looks good as far as the cosmetics of it. This is interesting since I look at myself and think I look like a "experimental frankenstein patient" Everytime I look at myself in the mirror, I am sad and wonder if I will ever get used to it.
I told Dr. Pockji thank you so much for the compassion she showed me at the hospital and for her confidence and positive, yet REAL attitude. I do much better with the straight forward truth, as she was really great for my personality. I was sad to say good-bye to her, but hope I don't ever need to see her again, since she is a breast VILLAIN doctor.

Blessings

It's Sunday, I love Sunday's but today I will be taking the sacrament from my bed.
I can't stand up and bear my testimony in sacrament, but I can do it from my bed. I feel like I have so much to be grateful for. The Lord has truly blessed me and recognizing those blessings is sometimes hard to do when you are in the fast world that we all live in. My world has in so many ways slowed way down and allowed me to reflect about the things in my life that mean the most and to recognize so many blessings the Lord has granted to my family. This process and journey that I am going through is refining me, refining my marriage and hopefully showing my children that through faith in Heavenly Father even in trials, hard trials, he is with you he will comfort and bless you.
How nice it would be if we always made the right choices in our life, if we were kind to others and shared what we have with others like the Savior did, then we could be free from hard times or trials in our life. I remember thinking earlier in my life, when I was facing an agonizing trial, "this is it, this is my lifelong trial" and of course because this trial was not my fault and was brought on because of the choices of other people I will be blessed for the rest of my life and not be given any other trials because I have had to endure this BIG one. NOT TRUE.... the Lord loves me so much and wants me to live with him again someday that he is reassuring me with each trial that I grow and learn something from it, so I can teach my family about eternal life and staying close to the spirit, close enough to know when I am being taught and when I need to teach.
So as I pray, listen then learn I see blessings in my life that have been here all along but I didn't recognize. My son's journey the past 2 years, what a trial I thought it was, actually it has been a blessing. Prayers that I thought should of been answered in a different way, I see now the meaning of those answers and understand the Lords hand in them. I wanted to continue to train for a marathon and ignore the doctors advice to get a hysterectomy, I now see that as a blessing. If I had not gone to the doctor I would not have found the VILLAIN in my body. The VILLAIN itself is not a blessing, but because I have the VILLAIN I am able to be more receptive to the spirit, I pray more intently and wait and listen for answers a little longer than I have ever before. I love life, and want to live it to the fullest, I want to thank Heavenly Father for every breath I take and everyday I get to spend with the family I am going to be with forever. Yes, blessings sometimes come in ways we never thought we could handle, but they are what they are...blessings!!