Wednesday, October 28, 2009

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 degrees 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 Blake's name makes me tear up, he is listening to the spirit and hopefully remembering the blessing he was given by President 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?

Monday, October 26, 2009

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 is our choice.....mine has been decided by the VILLAIN, well at least for a few months.

Thursday, October 22, 2009

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.

Monday, October 19, 2009

Dr.Donald 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 each other....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 don't 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 each other 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.

Sunday, October 18, 2009

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.

Thursday, October 15, 2009

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.

Wednesday, October 14, 2009

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" Every time 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.

Sunday, October 11, 2009


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!!

Friday, October 9, 2009

Trying to Cope

I spent the night in the hospital Monday night and came home on Tuesday. The drugs take a tole on my body, I am not used to not having full control so it makes me nervous. I do believe that I have the best husband in the entire world, he has been taking good care of my needs. Eric finally went to the doctor yesterday (I have been trying to get him there for 3 weeks) he has some fluid on his knee that is really giving him some pain. He was given some anti inflammatory and told that he either tore or bruised some cartilage, he never complains but he is sure limping on it so I know it must hurt. All the while attending to me. This is what Eternal Love is about, I tell my girls all the time that I hope they marry someone as wonderful to them as Eric has been to me.
Since the last surgery I am having a hard time using my right arm, lifting it is really difficult since they took out all the lymph nodes. Don't take for granted being able to wash your own hair, blow dry your own hair, put on your make up, reach for anything that is above your waste line or sleep on your side. I miss not being able to attend the Temple, knowing that when this all gets a little better I can go again gives me strength and more incentive to do exactly what the doctors tell me to do. I will be starting physical therapy on Tuesday at the Mayo to help with the use of the right arm. Today I am going to see Dr. Peter Kreymerman and hopefully he will take out 2 of the drains, they are annoying. I still get emotional when I think about my life and the turn it has taken, last night when I had some quiet time alone to think about it I cried, but I always go back to the scriptures or prayer to bring me back to a spiritual place so that I can cope. I know the Lord knows me and that he is aware of me, and I also know it's ok for me to cry once in awhile.

Sunday, October 4, 2009

Dreams Do Come True

The past 2 days has been so nice to be home and spend with my family and close friends. I watched conference and was so touched by alot of the talks given. Yesterday I was listening to Elder Bednar's talk and became deeply emotional and touched. We have always been a family that expresses our love for eachother, my children love eachother and are best friends. Blake has always told his sisters everyday at least once a day that he loves them, and they with him. Eric and I have always told our children probably too much everyday how much we love them. Never a phone call ends or someone walks out the door without expressions of love being announced. I was grateful while listening to the talk that we have always been so free with our expressions to eachother. However, when he started talking about expressing our testimonies I wondered if I did that enough? Do they know how much I love the gospel? I wondered if my children saw me read my scriptures enough? I like to study when no one is home. We tried to always kneel for family prayer, and have morning scripture study but I'm afraid we fell short sometimes. Do they know that I kneel and pray morning and night, I have a strong testimony of prayer and know that Heavenly Father answers I have truly seen miracles happen in my family because of prayer so I think that they know. I immediately wrote a letter to Blake and let him know how much I love him. I hope he can feel the blessings that are pouring into our home because of his service. I love that I can watch conference and at the same time twice a year I know my missionary son is doing the same thing at the same time, how great is that?
Have you ever been so deep in a dream that when you wake up it kinda is sad, because you wish it were real? I did that this morning, I woke up and wanted to go back to sleep so badly. I was dreaming about a time when all my children were little, we were at the park feeding the ducks. Kayla was so cute and little in her pigtails and overalls, she was holding Kaitlyn's hand, of course Kaitlyn's hair was white and all over the place but she was so happy. I was holding Haleigh on my lap, and she and I were throwing bread pieces to the birds. Blake came running up to me and said "mom, when I go on a mission someday I want to go to Disneyland!" I laughed and said "you want a Disney mission huh?" he gave me his little boy grin and as he walked off into the sunset he was grown wearing his missionary suit, saying goodbye to me in spanish. When I woke up with tears in my eyes I thanked Heavenly Father 1st for letting me have this incredible dream and 2nd for the Miracle of Families, and that I know through this gospel of Jesus Christ we will be a family forever.
Tomorrow I am off to the Mayo Clinic for round 2, and it makes me sick right now to think of it. Please if anyone is reading this and you believe in the power of prayer, pray for my son as a missionary that he will be comforted and blessed during this time.

Saturday, October 3, 2009

Home is where my heart will always be

I wanted so badly to journal while I was in the hospital but I was pretty out of it and feared that I would write something that did not reflect my true emotions or feelings. Tuesday we got to to the Mayo checked in at 7:30 am and I think I was back in my room by 10:00 or 10:30 pm. It was a long day for my husband and family as they waited to hear the news from Dr Pockji and Dr Kreymerman. They gave great news that the surgery was successful and Dr Pockji told Eric that that they were 70%-80% sure the lymph nodes were clear. Eric was so excited when he was told that I would have to either have chemo or hormonal therapy, NO RADIATION.

Wednesday was a tough day for pain, the narcotics in my body were so foreign and I didn't like how I felt at all by that night I asked them to take me off the nerve block and all narcotics, I could not believe what a difference it made once those meds wore off.

Thursday started off being much better I was now on less evasive drugs to control the pain and I felt like a new person. I was able to walk around with the help of my husband and slowly they started to take out needles and one at a time be free from wires and tubes flowing into my body. Dr Pockji came into my room with another surgeon and she sat next to my bed and told me the Lymph nodes were POSITIVE for CANCER. What? This cannot be, we were so sure the worst part was over. It took me back to the day when I was 1st told the VILLAIN was in my breast, I was shocked and unable to respond. I looked over at Eric and he started to cry, Dr Pockji was very compassionate as she told us that on Monday I will return to surgery and have all the lymph nodes removed and a port put in the right side so that chemo would be easier for me. She explained that they were so sure they were clear but that as they dissected them they were able to see several nodes with positive results. She said that we will be aggressive with Chemo and Radiation. Later when Dr Kreymerman came in ( I love him ) he was so sweet and showed deep concern for me as he told me how sorry he was for the news. He also told me that there is a chance the procedure he did may not take because of the radiation, this we will not know until later when we see how the radiation affects my breasts. This is a long process and I will not be having radiation for another year, if it does not take after the radiation I will require another surgery. I just want to go home, I asked the Dr if it was ok for me to go home for a couple of days and enjoy 2 days without the smells and sounds of the depressing hospital room. She agreed it would be a good idea. Eric and I decided the most important thing right now was to get a note to Blake in the MTC and let him know about the surgery on Monday and to let him know we are so proud of him and that we are feeling his constant spirit with us and that this is going to be OK, we have the best Dr's on my team and we will still fight it and win. I don't want anything negative to get back to Blake, he is enjoying the MTC and has been put in the Advanced Spanish class, the blessings he is receiving are overwhelming, I want him to continue to have a great experience and do the work he was called to do without worrying about what is going on at home. So we wrote him a letter and I am sure the Lord will comfort him and bless him while he is away from us, bless his heart I love him so much it must be difficult for him, but he would never admit it.

Friday, I came home. Holding Eric's hand, and crying off and on the entire way. I know what this means no one needs to tell me how hard it is going to be, but I have so much to fight for and I have so much more in this life to do, so kicking and screaming the whole way I will WIN this battle eventually.