MRI

I spent the day in a gown at the Mayo Clinic today.   Pretty proud of myself, I didn't have to take any anti anxiety medicine to get me through.  Good news, my insurance is still going to cover me at Mayo--YAY.
Tonight, I'm in some pain. The process was not what I was prepared for, they have to inject some dye into the area around the bone, the contrast  helps them see what is going on in my hip bone.   I really liked the doctor, he explained each step of the way what he was doing.  They numb the area first, then inject the dye,  he told me to let him know if I had any pain.  Then..... he hit my hip bone twice with the needle--OUCH--
After talking to me about side effects, the nurse got me off the table and told me to walk down the hall for the MRI.  There was a strange feeling in my leg, probably because it was  numb.
They took me immediately in for the MRI.  Oh no, I remember this machine.  I asked if I could listen to some music, being so claustrophobic I was afraid of having a panic attack.  For the next 45 minutes I listened to the Eagles, and suffered through the  pounding noises of the incredible MRI machine.
As I sit here, in my bedroom, I can't help but think "when is this going to end?"  I rub my hand over my port and wonder if I will ever be free of this VILLAIN or the side effects.

Never Forget

I found this quote lying on the floor of the chapel this morning.

Never forget in the darkness, what you have learned in the light--

There is a transformation that occurs sometimes when people go through a life altering experience in their lives.  For me it started instantly, when I was diagnosed, on the way home I remember thinking "nothing else matters right now, nothing !!" When my brother died, I thought the same thing--I knew my life was going to change, what I didn't know at that time was how much.  Before cancer  I was arrogant to think that I could never be touched by the cancer, after all I was healthy right?  My life was happy, nothing needed changing, I liked my life the way it was.   Little did I know, I had so much to learn, I still have so much to learn.

My priorities changed quickly, along with the emotional turmoil came the realization that I was fragile, and frightened.  I've always known God lives, even though I was raised in a confusing atmosphere I learned to rely on the Lord and HE always blessed me with light.  How grateful I am for the knowledge of prayer, faith and hope.  Giving in to the fear and allowing myself to be vulnerable has been the best blessing of all.  I've learned that happiness is so much more infinite and real than I could  ever imagined. 

Recker's Rules

Eric and I bought a trampoline for Christmas, we know how much Recker loves jumping on the little one he has in his room.  When we purchased it we had no idea what a BIG hit it would be with the entire family, but especially with Recker.   Every time he walks through the front door of my house, he starts grabbing hands to lead him outside.  He has rules however, and you must follow them.

1.  you have to be on the tramp with him-----

2.  you are not allowed to sit down or slow down-----

Celebration

Today, is a good day--my new friend rang the bell for his last radiation treatment--whoo hoo.  When I walked into the waiting area and saw all the blue balloons and people, it put a smile in my heart, they were all there for him.  There is something beautiful about having loving, supportive people in your life.  For cancer patients it gives them HOPE, and FAITH in their future, that love is what gets them through one more round of chemo,  one more port access, another day of hovering over a toilet.  For me, I love  to have family around, keeping connected with them gives me pleasure, and I just want to cultivate it while I can,  enjoy every moment I have.   I will forever look at family and close friends differently than I ever have in my life.

As I sat and watched and observed this huge support system he has, it reconfirmed to me how vitally important it is to nurture good relationships,  be kind to everyone who is in your life, and those who are passing through, tell the people in your life how much you love them, how much you appreciate them.   Hold on to good memories and cherish the happy times.  What a happy time for this guy and his family.  I KNOW he will remember this day and hopefully it will bring him comfort on a day when he feels alone or scared--Thank you for inviting me to share in this moment with you and your loved ones.

Porche or Pinto

The past couple of days have been rough, not a lot of sleep, insomnia is kicking me in the behind.  It's the worst feeling to be up all night, staring at the ceiling, knowing in just a couple hours I have to get up and go to work.   Part of the reason for this besides the obvious hormonal, cancer crap, is I just realized that Us Airways has changed our insurance carriers, and I may not be able to go to Mayo Clinic anymore--when I opened the envelope and read it, I literally wanted to throw up, I felt sick.  Eric had just got home from work when I was reading the mail, I asked Blake to please go get him, when he came down stairs I asked him to read it too, he read it, and read it and then read it again, the next couple of hours I tried to find out some information but of course the offices are closed until Monday--I was watching Recker he was a great distraction, he and I jumped on the trampoline together, I had to keep saying to myself "it's OK, whatever happens, you can't control this, so just go with whatever happens"  yeah right, this means no more Dr. Northfelt, Dr. Magtibay, Dr. Freeman, Dr. Kreymerman,  MaryAnn Forrett,,  and all the wonderful people who have touched my life and been with me from the beginning of my journey. I could not get my mind off of it, I watched a movie with Recker on my bed, he makes me laugh and takes everything away just for a little bit--I loved that time with him, as soon as he fell asleep on my chest, I laid him next to me and just stared at him--he is so perfect, so untouched by the worries of the world.
Needless to say Eric and I were up all night worrying about this insurance thing, I went down stairs and laid on the sofa, it wasn't long before he was sitting next to me.  I love Eric, he looked at me and said "no matter what I want you to be at Mayo Clinic with your doctors, I will make it happen"  I told him it's not fair, it's not  that I think Mayo Clinic is superior to any other facility, it's just that those are MY people, they  are the ones who I cried with, the doctors I love and who I feel love me and know me.  I will never share with any other  doctors what I shared with Dr. Kreymerman and Dr. Magtibay they know a part of my life that I have never shared with anyone else, except Eric.  I was so upset I looked at Eric and said "it's like driving a Porche and then all of sudden being told you have to drive a Pinto, but you are going to have to pay more for it.  He looked at me and responded "yes sweetheart, but you still have a car"

No, you have a nice day !

OK so the other day someone said to me "have a nice day" and for some reason it kinda slapped me in the face ...I wondered how many times in a day we say that phrase without even really putting any thought into it, so you know me?  I decided to count how many times in one day I heard it.  I heard people say "have a nice day" at least 40 times in one day, I said it to over 35 people.  I kept a little tally in my head, I know the number was higher for how many times I said it because I was at work and I found myself saying it to every single person I talked to on the phone.  Not that saying it is a bad thing, just wondering how many times we say things without putting any heart into it. 

When Eric and I were a young married couple with 2 children, I remember how much I loved our bishop's wife, she was from Japan.  I learned so much from her, one time she told me that Americans are in so much of a hurry to get somewhere that they don't take the time to really listen to each other.  I asked her what she meant by that, and she said when she moved to the USA she had to teach herself how to learn English, she learned from watching TV.... (how scary is that?)  as she began to interact with other women she said she noticed how we all would say "hey how you doing?" but not stop to hear what the answer was, we would just continue down the aisle at the grocery store, church or work,  it really bothered her.   I have thought about that so many times since then, wondering how many times I have done that to people.  None of us mean to not listen,  maybe it's a cultural thing.

OK, so while I was doing my little experiment one of the stops on my list was the FedEx store to mail a package.  There was this man in the line in front of me trying to get a package mailed, the beautiful African American girl behind the counter helping him was one of the most patient people I have ever seen.  This guy asked her how she was going to guarantee him that his package would get to its destination without being broken or destroyed, she then asked him if he would like to purchase some additional insurance on his package, I will never forget what he said to her...and I will add that his tone of voice was very condescending and sarcastic.

"listen up that is not what I asked you, I know from the color of your skin and by the fact that you are working at a FedEx you probably are having a hard time understanding me, but just answer the question. Am I supposed to tell my friends who are expecting this package when it doesn't show up that the FedEx Chick told me it would get there, sorry?"  

Whoa, as fast as lightening the manager came out of the back room and my head swirled around like a person with whiplash, he did not just say that.  He stood staring her down as if trying to intimidate her as much as possible, she just smiled handed him his receipt and said "have a nice day"  before the manager or myself could say a word he turned around headed out the door and said  with a smirk on his face "no, you have a nice day"   She looked at me smiled and said "how can I help you?"  the manager and I both looked at each other in disbelief, I told her how sorry I was that he had just treated her the way he did, she didn't say much just smiled thanked me and said "have a nice day"   WoW what a day for me to try out the "have a nice day" experiment. 

I walked out of the FedEx  feeling really bad for that young girl, I hope she realizes how beautiful she is and that no one should be allowed to talk her the way he did.  

Mayo Clinic Symposium Living with Cancer

Do normal people go to cancer symposiums on their birthday? That answer would be.... Probably NOT. Me, I'm not your average normal person, it was exactly what I wanted to do and I'm so glad I did. Knowledge is empowering I want to soak in every bit of information I can about the VILLAIN in me, is it possible for he and I to live together without recurrence on his part? After listening to all the incredible doctors at Mayo Clinic, I walked away feeling like I'm in complete control of life and whether or not the cancer comes back in days, months or years I have no regrets.

I was fortunate to hear from all of my personal doctors at the symposium.  I'm really not a person who normally likes to sit and listen to lectures, however, this was close to my heart and I didn't want it to end--the information I got was invaluable for me.  There is something  to be said about sitting in a room full of cancer patients and their care-givers.  When we broke out into our disease specific sessions, Dr. Northfelt said he wanted it to be more of an informal session and allow patients and care-givers  to ask questions.  Dr. Pockaj is the surgeon who performed my mastectomy she spoke 1st, one of the most important things I took away from her speech was that 35% of patients find their own lumps by doing regular breast self exams-- I am a firm believer and endorse this frequently on my FB page.  I was told one time that a doctor told a patient she does not need to be doing her BSE because they are ineffective--- I'd say 35% is a significant percentage so I will continue to endorse.  The other thing I learned is that after a bi-lateral mastectomy (which is what I had) there is no need for mammograms.

Dr. Michelle Halyard was my radiation/oncologist she spoke next--I loved all she had to say and it confirmed to me that every fear, anxiety, memory loss, insomnia, pain, joint  muscle fatigue and loss of appetite is normal.  Imagine my surprise when I found out I was NORMAL-- well at least when it comes to being a cancer patient--I can't get anyone else to tell me I'm a normal person in "real life"

Next up was Dr. Northfelt, it's no surprise that I have not been happy about the fact that I do not really get to see him--I have been looking for another oncologist--Not all cancer patients feel the way I do--I am someone who NEEDS to see her oncologist at least once a year, and I have asked for this but been told that because Dr. Northfelt is also the lead oncologist for Mayo Clinic he is very busy and has administrative responsibilities too. He is a wonderful Dr. I remember the 1st time I met him I felt so comfortable, he made me feel good about my diagnosis and gave me hope for my future--I loved that he was my doctor--after talking to other cancer patients, not necessarily from Mayo Clinic, I have discovered that they all see their oncologist--I know patients who are just fine with seeing the PA (physicians assistant) they don't want to bother with the doctor, or that seeing the doctor creates anxiety or unwanted fear--I AM NOT THAT PATIENT--seeing him continues to give me hope, helps me to feel like he is completely on the same page with me and that he knows who I am, I'm not asking for much just once a year, as much as I am at Mayo that is fair--right?
OK so back to Dr. Northfelt-- before the break out session started he approached me and thanked me for the tie I gave him for Christmas--I was shocked that he even knew who I was, but gave me comfort knowing he did.  He lectured about health and fitness--but before he started he said something that brought tears to my eyes, he said that a patient he had not seen for awhile had just told him she had decided to see a different oncologist and that Dr. Northfelt was not providing her with the care she needed.  He seemed really sad about this information, it touched my heart and brought me to tears.  This is the reason I wanted him specifically for my oncologist, he has a heart.  What I took from his lecture is that I am doing everything he asked me to do, he talked about the book Anti Cancer, he again confirmed to me that cutting out sugars, fats and having regular exercise in a daily routine will help lower the risks of recurrence--walking at a natural pace 3 hours a week also reduce the risk of Breast Cancer relapse.  I'm in check with all he suggested, I know if my cancer returns I did all I could do--NO REGRETS.

Maryann Forrett is the PA for Dr. Northfelt she spoke next--her subject  was intimacy and sex during and after cancer treatments--kinda an embarrassing subject to talk about but she was eloquent and touched on everything that I had questions about--I did raise my hand and ask a few questions--I prefaced my question by saying "I know you all have had sex and you all want to ask what I am about to say but are too embarrassed so hear goes" and I asked my questions, I don't really feel comfortable sharing those on my blog, in that room though it was OK because if there is one thing I have learned all breast cancer patients share a bond, an understanding of the changes that occur in your life while going through such a difficult time. Intimacy for so many patients changes, for breast cancer patients especially, for the obvious reasons your body has now changed, I don't care how much you love and trust your spouse or significant other the fact is there are scars YOUR BODY IS DIFFERENT and exposing that vulnerable part of who you are, as a woman,  can truly be devastating.  When I had my mastectomy I did not want Eric in the room at the hospital I asked Dr. Kreymerman to have him leave the room while he examined me, I know it hurt him I could see it in his eyes, I knew he loved me, that was not the problem, I didn't want him to see  what I could barely look at--it took me weeks, maybe months before I would allow him to see me--that moment when I allowed him to see what I could barely stand to look at in the mirror was an intimate moment for both of us--intimacy is so much more than sex.
For the not so obvious reasons, an estrogen fed cancer changes everything, it is a part of what makes women sexually function correctly, and for me estrogen has to be blocked with medicine--the side effects for these medicines are a list I don't even want to bore you with--it's awful to not have control over how our bodies function, Heavenly Father created us perfectly and when something is missing or not working it all goes to heck--hot flashes, anxiety, depression and a low libido are part of that.

Pauline Lucas who was my physical therapist had a quote that I love  "Believe in Life, In Your Life" she spoke about meditation, health and fitness.  I love her, she was such an inspiration to me and I loved having my sessions with her--I miss her.

Overall, I learned to live for today--celebrate TIME, and hold on to all the good memories, make connections with people be meaningful, remember good and fun memories and write them down to reflect back on days when you need to be uplifted. Find something to laugh about everyday, it's the best medicine. My quality of life depends on ME and me only, it's all about quality not quantity.
These are my four F's
FAITH
FAMILY
FRIENDS
FUN
if anyone is having a difficult time with any of these,  its time to reevaluate  and rediscover who and what are important to you.

Happy Birthday to Me 2012

I ♥ Recker

I only have one more year in my forties, I'm not quite sure how I feel about that. When, and how did that happen? Five minutes ago I was 19 years old dating the love of my life and thinking anyone over the age of 30 was old, and definitely anyone over 50 was ready for the grave. Boy, oh boy how perspectives change. Today I turned 49, I spent the day at a Mayo Clinic cancer symposium in Scottsdale.  Eric surprised me with a night at the Westin in the Kierlands, this is where the symposium was held.  I know it sounds strange that I would want to spend my birthday listening to Doctors talk about cancer, but it really is what I wanted to do--I will post more about that later.  I was privileged to have lunch with my sweet friend Heather Lucas, I truly believe people come into our lives for a reason, I met Heather because I was undergoing cancer treatments she has become more than a medical care giver she has become a life time friend, I care and love her very much.

The best part of my day was coming home and jumping on our trampoline with Recker--he loves me, I have the hardest time explaining what my heart feels for that little guy--he smiles so big with his teeth showing and I can't help but laugh and squeeze him--he takes my hand and leads me outside to the tramp then climbs up on it, and grabs my hand to lead me on with him.  Just the act of leading me and guiding me is such an accomplishment for him, but more than that I love all that he has taught me about patience, and listening with my heart.  I'm convinced that unconditional LOVE is a gift from above.  Happy Birthday to Me.

Welcome 2012

This is the time of year we look back and respect,  have respect for TIME, where we've been and where we want to be.  I do anyway--I have so much to learn and so many ways I need to improve--I need to have these evaluations, they help me to search within myself and find the Monya I want to be, not the Monya the world expects me to be.

In 2011 I learned it's OK to admit when I'm scared, I learned this from my daughter Kayla, when she explained to me how odd I acted when I was diagnosed with breast cancer.  Any person who has had a serious illness can understand what I am about to say--and to the rest I hope you can respect it.  The  experience can be very lonely, it can strip you of your dignity, emotionally drain you and leave you feeling depressed and loaded with anxiety--I'm not sure why this happens but it is normal, I was NORMAL.  However, I will say this.... the more you are surrounded with family and people who love you, I mean really, really love you the more connected you feel, the more you want to fight.  Even if you have to give up your lifestyle from "before cancer" as a patient you need to feel like you are part of the CLUB-the club where all the living are--it helps to hear  and see lives moving forward and progressing--I guess what I'm trying to say is I get scared but I don't let fear rule my life.

In 2011 my son Blake taught me, he taught me I can do hard things..we all can accomplish hard things.  I think I thought my battle with cancer ended when I finished chemo and radiation, actually that was only the beginning, it was a huge hurdle to get over and I seriously thought I had won.  The headaches, the back and hip pain, nausea, insomnia, injections, viles of blood taken, procedures, scans and all the other physical pains are just minor battles, I have learned to devote what strength I have to the most important things of life, having meaningful relationships with my family, my husband, children and those who care. Journaling feelings, thoughts and desires are important for my family and heritage to read after I am gone.  My son is an incredible example to me of someone who knows the importance of these things, he lived without a hug from his mom for 2 years, he devoted all he could to the people of the Dominican Republic he conquered and returned with honor, I am grateful for all he has taught me.
This past year I learned to laugh, the importance of it. Laughter is a life pleasure, I love to see Recker laugh, especially when all his teeth show, I can't help but laugh too.  No matter what is happening in life, there are still plenty of reasons to laugh,  I hope I never let a time pass when given the opportunity to laugh, don't let those times pass--reach out and grab them, laugh with all your heart.
I spent New Year's Eve and day with Recker, Kayla, Jeremy, Blake and Chloe, kind of a last minute decision we are in Mexico. I am grateful today for a new year, new goals and the opportunity to learn from what I have experienced.  It's exciting to look ahead, not knowing what this new year will bring.  I am dedicated to a new year of learning, giving and sharing--I want to make a difference in the life of someone this year--