The last few weeks have been a whirlwind of emotions. Once again I am stuck in either a hospital bed or now in my own bed. I ran into the same problem I had with the first surgery. Dr. Lettieri warned me this surgery would be tedious. Besides the complications of waking me up from the first surgery the right side of my face has swollen up and began to drain not long after I came home from the first visit to the hospital.
Dr. Lettieri was out of the country, I called his office and was able to see another surgeon at Mayo Clinic. Unfortunately the inflammation needed to be drained. A fistula had formed. Dr. Lettieri explained to Eric after surgery he was afraid this may happen. While he was in surgery the paraded gland (saliva gland) was in the way of the nerve he needed to connect with. Dr. Lettieri could not get to the nerve he needed without disturbing the paraded gland. In the long run this slight unfortunate problem was unavoidable.
When Dr. Lettieri arrived home I saw him right away, and he arranged surgery immediately. I am now at home, recovering with a drain hanging from my head. I was able to see Dr. Lettieri in his office on Monday he took the head wrap off, left the drain in gave me an anti-biotic and now we wait.
How am I feeling? I am not on pain pills, you know how I hate those. With that being said, I also hate not sleeping. It's always a fight with me to take the medicine and sleep or live with the pain and use another source for sleeping. I guess that was clear as mud.....ha ha. My honest feeling is some pain, but grateful for a surgeon who knows what he is doing and is attentive to my health needs. Once again I have been lead to a surgeon who I love. In fact when his office called on Monday to get me in I advised Sharon his assistant "I will not be seeing any surgeon but Dr. Lettieri, I will wait if I have to." I didn't she and he got me right in. I want to hug him every time I see him, he is a breath of fresh air--but not necessarily a hugger.
So for now I lay in bed, work my Nerium business when I can, nurse my wounds and again thank the Lord for seeing me through a rough surgery.
Thursday, December 31, 2015
The last few weeks have been a whirlwind of emotions. Once again I am stuck in either a hospital bed or now in my own bed. I ran into the same problem I had with the first surgery. Dr. Lettieri warned me this surgery would be tedious. Besides the complications of waking me up from the first surgery the right side of my face has swollen up and began to drain not long after I came home from the first visit to the hospital.
Saturday, December 12, 2015
It's been difficult to blog current events. I've signed a book deal, however I am going to keep up my blog. Soon it will have the logo from my book. I will also have a FB page for caregivers, survivors, or for anyone wanting to know how to comfort a friend, family member or loved one during and after cancer has been diagnosed.
I entered the Mayo Clinic Hospital in the early morning of December 2nd, 2015. The last surgery I had with Dr. Lettieri was successful. He took a nerve from my leg masterfully entered behind my left
ear through the left side of my face under my lip. We were told if the surgery was a success we would feel it grow one inch per month. It has done just that and now it is time to finish the job. This is a very tedious surgery, trying to find a nerve that is workable from the right side of my face will take a few hours.
When I woke up in recovery, it was a little touch and go scary for Eric--not really sure if I was having a stroke or reaction to medicine--either way I dry heaved for over 24 hours, did you know dry heaving hurts?
After neurology was quickly called to the rescue I had CT-PT-MRI and brains scans--no sign of stroke--however since I was still in much pain and dry heaving I was kept for longer than expected.
My surgeon Dr. Lettieri is in Italy......What the Heck? Doctors get vacations?
I needed to go to Mayo Clinic since the surgery sight is bleeding. I was temporarily fixed up, but will not be seeing another Surgeon until Dr. Lettieri gets back. (Monday) There was nothing wrong with the surgeon I was able to see, but my ultimate choice is Dr. Lettieri--FOREVER- I made the mistake of going to Cleveland Clinic on a suggestion --HUGE MISTAKE -- I will never do that again.
While working on the nerve in my face, Dr. Lettieri had no choice but to try and work around my paraded gland. I am well aware of this gland and the damage that can happen if I don't get it fixed but I am not seeing anyone else but Dr. Lettieri. The gland for those of you who don't know is the gland where your saliva generates. This gland was compromised my face has backed up blood, either running down my throat or running out of my incision. We cannot keep it controlled with our own packing.
I'm looking forward to seeing Dr, Lettieri next week. with more updates to come.
Thursday, October 22, 2015
My blog will be changing soon this site will only be available to my family. I will post the new blog site before I do that. GOOD NEWS.....The reason the blog is being taken down is because I wrote a book and it was picked up by Archway Publishing a division of Simon and Shuster. The book is finally finished, being edited and will be on the shelves soon.
I will continue to keep updates with my health, and will continue to use this platform as a journal and therapy session for myself, but with a new address and look. Thank you to all who have been such a great part of my journey thus far.
Saturday, October 3, 2015
I drove to Mayo this morning to see Dr. Peter Kreymerman, so looking forward to him telling me I could pick up Recker now and that I could get rid of the BRA ... instead I was shocked when a different doctor walked in, mostly because he looked like he was 12 years old ... just kidding I think more like 21 ... maybe!
Dr. Peter Kreymerman and his wife had a baby girl on Friday November 5th at 4:59 pm. I'm not sure if I can post her name but she is a healthy 6 lbs 3 oz.baby girl. I got an email from Heather his assistant, and she sent pictures, however I would never post pictures without permission from Dr. Kreymerman, but I can tell you that she is beautiful, lots of dark hair dressed in pink. I am quite certain they are not getting much sleep, but that the baby is getting lots of love and attention, there is nothing like having a brand new baby they always bring such a sweet spirit to the home. Congratulations Dr. and Mrs. Kreymerman
Saturday, September 5, 2015
Today, as I entered the Mayo Clinic there was no piano playing. I proceeded to the lab to get blood drawn and tests necessary. My nest stop was to see Doctor Northfelt my oncologist. I had an hour and a half wait. I heard the piano playing and decided to sit and wait in the peaceful lobby. I listened to the waterfall, occasionally I could hear doctors and patients interacting as they walked by. But today I was grateful I could really enjoy the music coming from the Piano. This was much better than sitting on the 3rd floor and smelling the sickness of chemo in the air. I put my head back and closed my eyes. He started to play a medley of songs from The Sound of Music (my favorite movie of all time) It was enchanting to listen to. I remembered when Eric and I visited Austria a few years ago after I finished my rounds of chemo and radiation. As each song played I pictured that day we visited. I am one blessed lady. While there have been so many distractions in my life the past few years I have been blessed with so much. Patience is a virtue I never thought I could conquer, but in the case of my health I have learned it is invaluable. I have been blessed with incredible doctors all from Mayo Clinic, and Doctor Haberkamp from Cleveland Clinic.
Last Sunday Blake and Chloe announced they are expecting their first baby in February. The door bell rang, I answered and outside was a set of 3 balloons with a note that said to read to the Family. I was then asked to pop the balloon that reads #1 on it, so I did. Inside was an ultrasound picture. I quickly, wanted to read note #2 it read that someone in the family would be bringing grandchild #4 to join us in February. I thought for sure it was Kaitlyn and Brian. Scott and Haleigh, Blake and Chloe have all been very verbal about waiting to have children. The 3rd balloon was supposed to be popped by Eric, but I just couldn't wait. Oh, and I forgot to mention I was popping these balloons with a butcher knife. I quickly popped #3 to find out who it was.........Blake and Chloe......... Chloe said "Monya look at the color of the confetti inside the balloon....." it was PINK. This will be our first grand daughter. I of course went bizzurk running around crying, happy, hugging them all the while with the butcher knife in my hand.....I'm pretty sure it was an ugly sight and I might have said a curse word.......Eric and I are so happy. Blake has been such a great brother to his sisters, and compassionate and loving to me and to Chloe he will be an incredible dad. Chloe is so great with all the nephews and really loves them, I know she is going to be a wonderful mother. I keep thinking about her mom who passed away with cancer during the time I was going through chemo. She is with our little grand daughter now, sharing with her all the love she has and passing on a legacy for Chloe to follow.
Saturday, August 1, 2015
This time 6 years ago I waited anxiously for a negative diagnosis of cancer. Not receiving the news I was expecting, looking back on this journey I've been on I realize I am being prepared. For what? That I can't answer, I'm not sure I want to know. I would be lying if I said I have not had days when I want to crawl up in my bed, close my eyes and not wake up. I have felt unmeasurable pain, physical, mental and spiritual. I think we all want to believe we are "strong" If I had a dime for every time someone has told me how "strong" I am in the past 6 years, I'd be a rich woman. I'm grateful to those people. So many times I have prayed for a miracle and felt abandoned. Now that I've cried enough tears to fill a swimming pool I trust in Him. So many of us have a hard time recognizing the blessings that come in disguise of a trial.
Funny thing about that is, I am a rich woman. Not in a monetary way, but I am richer in my strength of who I am. I've been forced to live my life with loneliness, hardships and pain. What if I had not experienced these things? Where would I be now? Who would I be? He has bigger and better plans for me. I am in the midst of fulfilling commitments and I know He will keep His promises to me. I will serve other's, be happy with whatever circumstances come my way.
I have had to learn to challenge my thinking, to lean on a positive environment of people. I'm trying to learn how to balance my life. Work, family, Nerium, Mayo Clinic, friends, personal development and daily intentional goals have helped me to keep focused on what is most important. I've had to be brave in circumstances where other's don't understand or actually don't have the capacity to understand what this past year has done for me. Just when I thought I could never look myself in the mirror again, I became brave I let it define and refine me. I learned that my face is not who I am. I can't say I have fully embraced the idea of a partial paralyzed face.
A year ago I read a book that changed my life and added value to who I am, I will forever be grateful for having the knowledge before I read it, that I am a beloved woman of God. If not for having that testimony I probably would not have been able to make effective choices,. I've learned your thoughts either serve your growth or serve your decline. It's been proven we make and average of 50,000 choices everyday. I've always been a journal writer, a reader and I love good uplifting music so when I read The Slight Edge by Jeff Olson, I was like a sponge. I can attest to the power of words but as a child words were usually to my detriment. The Slight Edge convinced, and reconfirmed to me I have been lead and whispered to by the spirit all these years, I'm exactly where I am supposed to be.
Humility, a word I probably would have never used to describe myself 6 years ago I'm progressing by studying everything I cab get my hands on. While studying I often think of all the people who have touched my life. Who I think are a true example of humility. Not one of these people know they are humble, isn't that interesting? It is who they are, an attribute they have mastered without knowing they have. Some of these people have had devastating events happen in their lives and learned to control their thoughts and actions to mirror match a Christlike attitude. Other's seem to not have had any apparent significant trials in their lives. They surround themselves or have been surrounded by proactive people who have built them up, showed them compassion and unconditional love. The attribute of Humility is such blessing, and not easy to accomplish.
During my reading of the Slight Edge and studying scriptures, I am finally able to say I believe in the power of the brain and how our thoughts, positive or negative can effect everything. I made the choice to look myself in the mirror everyday and say "You will smile someday" It's been over a year, I've had 3 doctors tell me I will never smile again, I will never have facial movement on the right side of my face. I'm glad to report not all doctors are in charge of what the outcome of positive mental attitude is. Dr. Lettieri told me I would smile again. He has encouraged me to continue to work that muscle. Every morning for a year I tell myself over and over again "I will smile again" then I tell my brain to tell my mouth to move. Dr. Lettieri has never given up on me, he has never said "You Can't or you Won't" It sometimes requires a surgical procedure but I am slowly but surely starting to tell my brain to simultaneously smile when I tell it to. It's working, I am reaping the rewards of my daily affirmations. It's a slight smile, but what's more important is realizing, just like reading from a good book everyday, kneeling to pray everyday, having faith all things I've done all my life are things I have mastered by doing them receptively. Those things are a part of who I am, if I stopped doing those things it would be like not brushing my teeth everyday, eventually they would rot. It really has been such a slight change, but adding it to my daily routine has strengthened not only my brain and facial muscle but it has lead me to believe an arrow could be shot at me and I could repel it.
I am endeared to Dr. Lettieri, and to Heather Lucas. She has seen me through so much. I miss Dr. Kreymerman and wish he was here to see my progress. Dr. Lettieri has now been re-named as my "happy smile doctor" He said I would, I said I could and I am making progress. I am beginning to dream again, to have hope for my future. Prayer, the greatest miracle in my life when burdens have weighed me down, prayer from so many people have helped me to believe in myself again. Putting my faith in Him I believe I have even greater miracles to come. He could take away all of this but His plan is perfect in every way. These trials are refining me into the woman I've always dreamed of being.
Thursday, July 2, 2015
This past week has been hard, not because of the pain from the surgery. Staying home and not being able to drive has been difficult. Today I had my post op appointment with Dr. Lettieri. Sonya was so sweet to take me to Mayo I don't like anyone to go with me because it is not a fun way to spend time. This time I was forced to ask for help, Eric could not go because my appointment time was changed at the last minute. I wondered what she would think of Dr. Lettieri and hoped she would love him as much as I do. I warned her as soon as I introduce her as my sister Sonya, he would have a smart comeback about Monya-Sonya. I was right, he asked why "I said it was the 60's" he laughed asked if we had another sister named Tonya, and of course I said "oh no, that would be too easy her name is Kris.
Today he had a young resident with him Dr. Deep very cute and very young. Immediately Dr. Lettieri announced he was not happy with the eye surgery. We're going to wait until all the swelling goes down then he will decided how to proceed with more surgery. My eye started to open yesterday and it is dripping more than ever. He said it was just going to get worse, and that he wished he had been a little more aggressive with the bottom lid, it's drooping more than Dr. L wanted it to be.
Dr. Lettieri was really happy about my nerve cross graft he did in February, it is even better than what he had expected. I am hoping I can wait on the eye surgery and have him do that at the same time as the nerve surgery. I didn't bring that up with him today, I will be seeing him again in a couple weeks.
Heather came in and took out the rest of the stitches in my eye while Dr. Deep and Dr. Lettieri talked doctor talk--way over my head.
Today was good news about the nerve, but surprising news about my eye. I could tell he was disappointed. I told him "it's ok" he said "not for me" I made the assumption he was being hard on himself because he's a perfectionist. He said "No, that has nothing to do with it, I just want you to have it working at the best it can, and I know it won't so I want to fix it" he continued to tell me I would have more drainage than I had before if I didn't get it taken care of.
Many people have questioned my choices, guess what? that's ok I realize you are not living my life you are not the one who has to kneel and ask what to do. I feel completely comfortable with the decisions I have made. Many have given me natural path choices and questioned my choice to go medicinal, it's ok too. Everyone has a different thought process, these choices were made by relying on the Lord to answer me and lead me to the right places. I can honestly say the only time I doubted a decision was when I went to Cleveland Clinic, I felt rushed to make an answer and Dr. Lettieri was out of the country when this all happened a year ago. We made a fast reactive choice, based on the fact we were told with a nerve we only had a small gateway--because I didn't know a "small" gateway didn't mean I needed it taken care of within a week or two. I could have waited for Dr. Lettieri. I don't look at things that way, my mind doesn't process that way. If I hadn't gone to Cleveland Clinic I would not appreciate and love Dr. Lettieri like I do, I wouldn't appreciate Mayo Clinic like I do. So to those skeptics who like to give me their opinions, I will not apologize for following my heart listening to the spirit and doing what we thought was best at the time.
June 24th 4:45am on our way to Mayo Clinic. I talked Eric's ear off trying to keep from taking any anxiety medication--hey, who knew.....it worked? While entering the Clinic I refused to look to the left, intentionally I jabbered to Eric about what a positive experience I was having with Nerium. I wanted----NO I actually needed to keep my head in a good place for at least a few more minutes while we got registered.
Just over a year ago was a dreaded day. I'd been discharged from this same hospital with a disfigured face. Hearing a doctor tell me "you need to get used to the new Monya, your face will never be the same" If I were to look to the left I would have a vivid remembrance of being wheeled out in a wheelchair and while waiting for Eric to bring the car around I watched a woman fall to the ground have a massive heart attach. I listened as "code blue" echoed through the corridor. I watched as healthcare professionals did all they could do to revive her life. They were unsuccessful, and I felt nothing but jealousy. I wouldn't necessarily say this was my lowest point of my life, but it ranked up in the top 5.
I've seen and felt tragedy, separation anxiety, depression, heart ache, enormous unexplainable pain, loss of hearing, sight, smell, both breasts and all my hair. I've had temporary loss of feeling in my hands and feet. I still look back at all of this and know the positive out weighs the negative. I'd do it all again, feel every ache and pain to know what I know now. What I know to be true is there is life after this earth life, it is beautiful and peaceful there is no pain, hurt or jealousy. It is a place like no other place you have been here on earth. I want to go there again, I will accept and take on all that happens to me hear on earth to have that feeling for eternity.
After being registered Eric and I headed up to the 2nd floor for surgery. When I got into the elevator
I couldn't help but look at that spot, it was empty; too early in the morning for visitors. The rush of reality came flashing back of that day a year ago. Eric asked if I was OK, I responded "yeah, sure I'm good" After checking in with surgery, they took me right back. I guess Dr. Lettieri is on time. After vitals, question after question about allergies and when was the last time I ate or drank anything, I started to dose off. My thought was "Read my chart, can't you see how many times I've answered these questions? this is not my 1st rodeo" I saw Dr. Magtibay walk by and into the patients room across the hall, I suddenly sat up and wanted to talk to him. The nurse continued with her questions, but I keep asking her to ask Dr. Magtibay come see me when he's done.....she was looking at me like really? I said to her I will answer all your questions, you can start my IV really fast if you promise me you'll get Dr. Magtibay. This time the IV only took a one time poke, that's new it usually takes several pokes then they have to get a different, more efficient RN to poke me.
Soon Eric came back and just after that came Dr. Magtibay, I just love him. He hugged me wanted to know about my surgery. I asked about his children and wife, then Dr. Lettieri came in. I didn't have to introduce them they knew each other. Dr. Magtibay excused himself, turned smiled at me and wished me blessings on a great outcome.
|ready to go, Dr. Lettieri took this picture so I could see|
the difference of my smile
Dr. Lettieri smiled at me and when I smiled back.....he said "do that again" not knowing what the heck he was doing I said "why?" he said "quit being difficult just do that again, that thing you just did with your face" I shook my head and said with a big smile "this?" he smiled big, he said "where's Heather?" "I haven't seen her yet" Dr. Lettieri went out to find her, but she was walking in at the same time. "do that again for Heather" I smiled as best I could they both in unison said "It's working" Dr. Lettieri asked me to do that same thing over and over. Apparently the surgery he did in February with the cross nerve was starting to show. By their responses I could tell this was good news, he was happy. Heather has been with me from my 1st diagnosis with breast cancer, and we have become great friends. I can honestly say she has been a true to the end friend. She watched as I suffered through chemo, radiation, expansions numerous surgeries she has assisted on for me. She was there last year when I was rushed to the hospital in horrible pain, curled up in a fetal position losing all control of my bodily functions. She stayed with my sisters and helped them to understand what was happening to me. I love her like a sister, I really really love her. She was happy for me, truly happy for this bit of HOPE I was finally feeling.
|Dr. Lettieri, Me, and Heather|
I love them both
Wednesday, June 24, 2015
Tomorrow morning I will enter Mayo Clinic Hospital for my 26th surgery. I'm having a lot of anxiety with this upcoming operation. I forced it so far into the back of my head knowing we were going on a family vacation, suddenly on the plane ride home it hit me. I'm not quite sure if it's because I realize what recovery is going to be like or if I am just so done with all of this silly nonsense--it's like groundhog day, over and over again.
I cannot wear my cochlear device it is excruciatingly painful ringing in my head and gives me terrible migraines and dizziness. However, I've lost most of my hearing in the left ear (the good one) I can't hear my alarm go off in the morning (usually I can hear that thing ring throughout the walls of my home) I can't hear music, people talking, everyday things I have taken for granted. Although, it is annoying I will have to wait until after this surgery tomorrow with Dr Lettieri hopefully he will be taking the gold weight out of my eye lid placed in at the Cleveland Clinic (wrong size) and being upgraded to Platinum--I like to consider it an upgrade--GOLD to PLATINUM--and I think I will save the Gold Weight--let's just see what Dr. Lettieri thinks about that......I paid for it, why not take it home? That's the easy part, the more in depth portion of the eye surgery is basically to fix the chronic dry eye--I actually didn't want to know the details about how that is done, Dr. Lettieri likes me to be informed of procedures--I frankly don't care or understand all that doctor jargon, so I told him "I trust you, just do it" I love and do trust him, I'm in good hands tomorrow. Heather will be scrubbing in too....bonus for me I love that girl.
Time to get to bed now I have 5 hours before it's time to check in.
Saturday, May 30, 2015
Friday, May 22, 2015
So much has happened since I last posted. May is almost over, I never go this long without blogging. This has been such a great way for me to release some of my frustrations, express my appreciation from my heart and share the humor in my life.
I have a surgeon. I love, love, love. Dr. Sal Lettieri. I was referred to him by Heather a year ago, but since he was out of the country at the time we decided to go to Cleveland Clinic (huge mistake) I haven't heard from Cleveland Clinic since I had my surgery in July of last year. I realize I should have waited and seen Dr. Lettieri. He is employed by Mayo Clinic, works at the Maricopa Burn Center in Phoenix and does 2 days a week at Mayo.....whew that was a mouth full. How do I explain Dr. Lettieri, and why I love him......? He is compassionate with a little bit of sassy in his attitude. I just really feel comfortable with him. Dr. Lettieri did my last surgery at Mayo Clinic. He is very confident in what he does. There is a huge difference in doctors who are confident and those that are cocky. My doctor at Cleveland was very cocky and arrogant, I never felt comfortable with him or felt he had my best interest at heart. I was so impressed with Dr. Lettieri one day at one of my appointments. He was telling me what he thought would be the best surgery for me, then instead of making the decision he said "I know some really smart surgeons, I'm going to call one of them and get their opinion" he pulled out his 'flip phone' (seriously who still has those?) called a colleague gave him my diagnosis and asked him what he would do.... the other surgeon agreed with his decision, he hung up and said "In my job I know some really, really smart people, so I'm going to get one more opinion" and he did, he called another surgeon he knew just to make sure they all thought it was the proper procedure.....I loved him at that moment, not too many doctors do that in fact no doctor I know has ever done that for me.....confident vs. cocky......he's confident. Last week I got a text from him saying "call me when you can" I was at work on a break so I called him. This is what he said "I've been thinking about your surgery and......." he proceeds to tell me about a change in the procedure of my surgery, ...... I interrupted him and said "I trust you, I don't really understand any of what your telling me anyway so just do what you know is best for me" It finally feels really great to have a surgeon I can trust. I have thought about him so many times since then, what it said to me was he was thinking about me. He has many patients, and I guarantee he has their best interest at heart. I found out that he is Nie Nie's Dr. L, on her blog.
My last appointment with Dr. Lettieri was good news. The nerve replacement he did from my leg to my face is supposed to grow an inch a month. February was my last surgery, so it should have grown 3 inches. He checks this by tapping on the left side of my face to see where I feel it on my face. When he did that, I instantly felt it on the upper right side of my lip....HOORAY....stand up and do a jiggle dance.....it's working. I cried on the way home, I'm so happy. So, what does that mean? It means in 3 more months if it continues to grow I will have another big surgery to connect it to a viable muscle, or was it a nerve....? I don't know, it gets connected to one of those on the right side. It doesn't really change the look of my face, but it gives me some feeling back. Right now my face is still so numb. The entire right side of my upper lip feels like when you go to the dentist and get novocaine..... Dr. Lettieri, was really happy with the results.
My eye continues to be an issue, it constantly drips. Basically the surgery Dr. Cockyman did at the Cleveland Clinic was a waste of time. I have a hard time seeing out of my right eye. By the time I leave work at UsAirways it is a constant drip and never goes away. Dr. Lettieri and Heather had me do some exercises with my eyes to see what the issues were. I will be having surgery at the Mayo Clinic on June 24th, hopefully to put an end to the eye dripping and redness.
Friday, May 1, 2015
I was recently at a training in Canada, as I religiously took notes I suddenly was struck with shock when I heard Mark (the trainer) tell a story about how much women pay for their beauty products. I heard laughing from the audience, but I was in another world. I was having an outer body experience. What is the price we pay for beauty? I'm not talking about a monetary price, as Mark was humorously entertaining us with.
I had an ah ha moment, I wrote: Mark said "believe me guys, there is a price for beauty...."
I immediately wrote down "For me, what I have learned about beauty from Nerium this past year is Priceless" My face is disfigured, it will never be the same. I want that so badly, I want to look at someone and smile, smile BIG. I want to show my teeth. I can't believe I took my smile for granted. Just like I took my hair for granted, the feeling in breasts for granted, being able to run and train for granted, I could go on and on..... I simply took everything in life for granted.
I cannot honestly say any of this is understandable, nor has it been easy. I may not always please people with my honesty and truthfulness, however I know the Lord has gotten me through these past few years. I have been refined, not defined by Him who loves me just as I am. In my quiet time, when I spend thinking and pondering over why so much in my life has been hard there have been times I've truly wanted to crawl in a hole and die--I've wondered if anyone would even miss me, lost sometimes in despair.
Then suddenly my heart is filled with more love and an overwhelming feeling of His arms around me, pulling me up through that dark and empty hole into the light again.
I lived for so long not caring about others, not caring even about where I was going or where I should be. I now know my life was intentionally and most humbly prepared for me before I even came to earth. His grace has gotten me through enormously unbelievable circumstances. Because I know He has made promises to me if I am righteous and obedient I will continue trying to live as He wants me to. I will share Hope and Faith with others, I know the Lord will use me, he will lead and guide me to people who are in need. This life for me is no longer about beauty on the outside, I ask Him to help me not turn from pain and to give me strength and compassion to help others who are climbing an uphill battle.
We all want to feel beautiful, external beauty, I know this because I have been that person. There are still glimpses I take in the mirror that horrify me. When I am weak, I know I have to move forward, never go back, never give up. I am putting all my faith in unseen strong hands that I have felt comfort me and pull me to a higher ground. I love that feeling, knowing He is watching over me, He knows me, He feels my pain and He understands my journey on this earth is not quite over.
Physically I am tired, my body aches my heart is full and yet I want to fight because I know there are so many more miracles to come to others from Him through me. I don't feel comfortable sharing those sacred moments the Lord has so gracefully revealed to me I have more work to do before it is my time to go live with Him again. He has lifted my burdens on so many occasions when I have wanted to give up. When Sheldon died, one of those special moments came. I truly miss him, and visit his graveside often. I'm not sure why, I haven't visited anyone's grave as much as his but I feel a peace there. I will never forget him telling me I looked beautiful when I was bald. Eric tells me I'm beautiful everyday, he is so kind in that way and I appreciate it so much, but the day Sheldon said those words to me, it meant something different. He stood there pale faced and bald himself and yet for some reason those words penetrated my heart like no one else ever has. Maybe because I trusted he knew how I was feeling, not just using "words" to succor the needy.
Every bit of the worlds definition of physical beauty has been taken from me. So yes, there is a price to pay for physical beauty, but for me what I have learned about pure unconditional love and beauty in His eyes is priceless.
Sunday, April 19, 2015
What an unbelievable week I've enjoyed. I was asked by Renee Olson (Chief Leadership Officer for Nerium International), to speak at Nerium's semi annual national convention. It was held at the SAP center in San Jose, a sold out crowd with thousands of people. I was hesitant in actually following through with this great honor. I am so transparent in so much of what I do, but often do not allow other's to see the delicate, emotional roller coaster I've endured. The ache's have been real for me. The weight of this responsibility became so heavy, knowing my face would be on huge jumbo screens for all to see, gave me tremendous anxiety. This past year there have been times I've just wanted to hide. Hearing the reality of an innocent child ask their parent "mom, what's wrong with that ladies face?" has been difficult to process, usually I reply before the mother or father has a chance "I just have a boo boo" the parents usually apologize and walk off, saying they are sorry. That is my reality, that has been my life for a year now. I realize no one can truly understand what I am feeling, so I usually just say "I'm fine" when truly my heart is weak, struggling to be brave and strong. Just when I've started to heal and feel like life is taking a turn, another trial comes. I was so amazed while I poured out all my feelings, I felt loved. I prayed for the right words to say. I felt this peace come over me before I went out on stage. I really opened up and let Him guide me. I could not read my notes, I resisted putting on my glasses to read them, I had to condense 5 and a half years into 10 minutes--I knew there was no way I could convey all the emotions we've lived through in that amount of time. I decided before I went out, I would meet Him where he needed me to be and that maybe in someway this would bring me full circle and heal my insecurities. This experience helped me to be one step closer to being whole again. I prayed that whatever I said would touch at least one person and help them to understand that at times we all feel broken in some way or another, but not giving up is the secret power we all have inside of us. We all want to feel valued and important, I've learned this through living it personally.
For those who have followed my blog, I don't really talk much about Nerium because I didn't want my blog to turn into a platform for advertising. This is a sacred place where I go to get away from the world, I am alone and listen to uplifting music when I write. I've always wanted this to be an authentic reality of who I am. This is a place my children will be able to go long after I am gone to laugh, cry and remember who their mom was. With that being said, I do have to add I know without a doubt Heavenly Father led me to this incredible company. I was not looking for anything, still involved heavily in health issues. The confirmation I felt when I said yes to Nerium was so overwhelming at the time I didn't know why. Now I do, within a few months of joining with my friends, my facial paralysis happened. If it was not for the self development I've gained from living in the culture of the Nerium Family, I don't think I could have made it through this past year. I highly recommend to anyone READ THE SLIGHT EDGE by Jeff Olson. It has nothing to do with Nerium, it has to do with a philosophy of life. Even through my breast cancer journey, losing my hair, my uterus and both breasts I still felt I was ok. My perspective on life has changed, I learned that nothing in life is worth anger, hate or malice. Seeing the world through different eyes lightened my heart and soul.
The Villain had taken from me everything that the world defines as "feminine" it was difficult to process, and I relied on the Lord to get me through it. However, when the facial paralysis came and a doctor said to me "Your face will never be the same again" those words penetrated deep into my mind. I cried, my husband cried for me. I was depressed and sad, I took so much of it out on my family, and never wanted to be seen in public again. It has been a slow process and one that I cannot say I have fully conquered, but I can honestly say without hesitation no where, except for my church congregation and family, have I felt true unconditional love, like I have with the Nerium family. Jeff Olson has taught me true happiness begins from the inside and manifests itself to others when you are genuine with thoughts and feelings of yourself. Success is not a car, or a home. So many people think "well when I lose weight, or I get a new job, or I blah blah blah......I will be happy" Nothing can be further from he truth, being authentic and happy with yourself under any circumstance is what success is, it's what attracts people to you and it is what helped me to live through this year. Be patient with me I'm still under construction.
|Speaking in front of a sold out stadium--ummm..kinda overwhelming|
I had to lean on the spirit and speak from the heart.
|Nerium and CEO Jeff Olson know how to throw a|
white party--so much fun
When Sheldon died, I wanted to give in and give up, now I see the Lord has been waiting for me to do my part. To fulfill a promise. I'm finally beginning to understand I don't need all the answers right now. It's never too late to start all over on a path that will move you forward. Step up to the starting line and run, run as fast as you can, tomorrow may not come. This is the time to love others, share a kind word and be true to yourself you will find the strength to pull yourself out of any situation. There are days when I have to remind myself of who I am, convince myself once again I have the power within me to be happy. True happiness cannot be given to you, it cannot be bought and it certainly cannot be faked. When you are completely happy, you live with no regrets, you are at peace with who you are and most of all your spirit illuminates and becomes contagiously beautiful.
Tonight, Eric and I went to see the new version of the animated Disney movie Cinderella. As I watched I was engulfed in the story, so many paralye's to my own life. It gave me a picture of the unparalleled beauty of courage and kindness in the face of humiliation, suffering, and shame. I watched thinking sure, Cinderella looks stunning. But it’s not her ball gown or glass slippers that first catch the Prince’s eye. It’s her inner beauty that captures his attention—her courage and her kindness. Kindness isn’t weakness; it’s strength. Submission isn’t pitiful; it’s beautiful and courageous. We all have the power within ourselves to make our lives happy, it is a CHOICE.
Saturday, April 18, 2015
|Lunch with Hilary-😘|
A few months ago, Hilary Weeks emailed me to set up a time for us to meet and go to lunch. With so much going on it was difficult to make that happen until now.
Everyone knows I fly for free, so I got on a plane flew to Utah stayed with one of my oldest and dearest friends Teri Padovich. We had so much fun catching up, laughing, actually laughing a lot. We talked a lot. We haven't seen each other for so long. I was a little worried about her reaction to my face. She didn't skip a beat, we hugged and off we went. It was like old times, I really needed this time away from Arizona.
While Teri was working I met Hilary for lunch, good thing I knew what she looked like, because we hadn't at that point exchanged phone numbers. I just knew I was supposed to meet her in Harvest restaurant at Thanksgiving Point. I immediately recognized her and apologized for being late, those darn GPS's don't always give out the correct directions.
I have to say, meeting Hilary was wonderful for me, what a rey of light she gives out. Her spirit is inspirational, I could feel her sincerity. It's rare to find people you can truly connect with on a spiritual level. It felt like we'd been friends forever, she is beautiful inside and out. Just as I love the Live Happy campaign, Hilary has her own called Live Positive. If you haven't gotten the app on your phone you are truly missing out. Keep track of happy thoughts, type journal entries, make goals and earn inspirational quotes. You can even form groups of people to do it with.
I loved talking with Hilary, she has 4 daughters, met her husband while he was on his mission in Alaska --she thought Elder Weeks was pretty cute, and pretty inspirational himself. A few years later she was walking on the BYU campus when she saw him for the 1st time since Alaska. She said she yelled "Elder Weeks" he turned, saw her, ditched his friends and the rest is history. I love her music, I've heard her speak and for so many reasons my heart has been drawn to her. Now I know why. She is so positive, loves her family and has a burning desire to make the world a better place.
After lunch we exchanged phone numbers, and to my surprise she text me and invited me to attend the Women's broadcast with her and 3 of her daughters. Teri dropped me off at Hilary's house I met her daughter's and her husband (Elder Weeks) what a great family.
|I love these cute girls....❤️👀|
Sitting the woman's broadcast with Hilary and her girl's was so fun. When it came time to sing, my natural instinct was to pick up the hymn book and sing....all of a sudden I realized I am sitting next to Hilary Weeks. Her music has inspired me and helped me through some incredibly rough times...this was really surreal. I wanted to close my eyes and just listen to her voice sing to me. Janice Kapp Perry also in the congregation--I was surrounded by inspiration.
Of course I wished my daughter's could have been with us too. I am an avid note taker. I have stacks of journals and note pads full of the notes I have taken from special talks and thoughts I spontaneously have while visiting Mayo Clinic. Some of the most important life's lessons I've learned are written down and journaled. I sometimes go back and review them and often I am so surprised at the words I have written. How easy it is sometimes to forget the lessons we learn at poignant times of our life. I'm so grateful for having those detailed memories to look back on. This visit with Hilary and her family will always be one of those memories. The Lord has truly blessed me with good people in my life. Hilary and I will be forever friends now.
|This is truly a beautiful woman inside and out.|
|Notes from Conference|
Saturday, March 21, 2015
Whoa----I pushed myself today, but I've never felt more gratified. 365 days ago, when I found out about the International Day of Happiness--I was incredibly touched in a spiritually humble way. I made a choice that day, I was going to do 365 days of Happy Acts and see if it would change my life in any way at all. I began by writing everything I did in a private calendar. Then I got a planner and made it an intentional goal for my everyday personal growth. I had to be intentional with my thoughts, but not intentional with my actual act of kindness. I let those come naturally but looked for ways I could help another person. After 6 weeks of doing it everyday, I was put into the hospital for 3 weeks, still I was able to follow through with those acts, they were on my mind constantly. I became obsessed with overcoming obstacles and achieving this goal. 2 Weeks at Mayo Clinic, I came up with ways to help nurses or doctors out--sometimes just by thanking them using their name, and sincerely getting to know them. Smiles, special notes and gratitude were my best friends. I handed out Live Happy Magazines to everyone I could. Then I went to Cleveland Clinic for 7 weeks. This time I went prepared, not knowing what the circumstances would be--I was still able to give thanks, and share happiness. In the past year I was blessed with 8 surgeries to help save my life. What better way to say thank you? These are people who loved, cared and helped me through some tough times....Diana Lents I will forever be grateful for, Angel and John were constantly giving me #HappyActs. Evgenya and Alex Kreymerman visiting me and showing #HappyActs was a huge surprise, but so much needed during that time when I had no family with me.
March 20th, 2014--- from this day forward I will give at least one act of kindness a day, and I promise to do this for 365 days.
Today March 20th, 2015---✔ I did it....
I can't even explain the overwhelming feeling of such an achievement and what it did to change me from the inside out. I can honestly say, I am a different person now than I was a year ago. I'm not talking about the facial paralysis, I made this goal before that happened. My motivation behind this goal was to see how many people I could touch. Turns out the Lord had a different motivation in mind when he lead me down this path. He wanted me to see how achieving this goal would change and help me.
|THESE people give unselfishly everyday as they|
work at Mayo Hospital--5 and a half years with them
I'm grateful BOSA DONUTS FOR EVERYONE
|You know if you read my blog I like to visit the chemo lab|
and always take Holiday Treats for them to enjoy during
March and April before Easter...lots of tears today
Today as I drove the long freeway to Mayo Clinic, I pulled over to the side of the road, cried some tears of joy and actually said a prayer of thanks for helping me achieve this incredible goal. I actually start goals and give up, but not this time. It was certainly not for glory, or to boast in anyway. I wish I could post every act of kindness I did, however for a couple reasons I will not:
1. HIPAA laws and the privacy of some acts that are too sacred to share.
2. Heavenly Father and I may be the only ones who will ever know the change these people made in my life.
At the end of the day, trying to change one life at a time, will hopefully help others to feel what I've felt this year. These people have made an indent in my heart that will never ever be removed. Most of these people will never know the difference they've made in my life--some of them are my hero's as I watched them struggle with different trials. I was placed in some places at the right time for a reason--I am so eternally grateful for those times-- This year I found out how strong I am, who I am, what I can achieve and most importantly that because I intentionally found these people, I was then able to find myself, I like what I found--for the 1st time in my life nothing can hold me back from being BRAVE--I've let it define me. Today I realized while I was having that tender moment on the side of the road, I'm OK with me. I'm no longer afraid to open the door to a me I've never seen before, and I know on those days when the walls seem to high to climb Heaven is on my side. I'm ready to let nothing hold me back from what I feel inside of me-- I will be forever be grateful to Jeff Olson for going before the United Nations and officially making March 20th the International Day of Happiness. I had the opportunity to meet Kym Yancey, CEO of the Live Happy Magazine he is a wonderful man, with a love for his family and for spreading happiness--I will never forget my interview with him. Good people, attract good people--don't we all want good people in our lives?
Happiness is part of who I am now, I look forward to inviting more blessings not only into my life but to give to others--365 days of Happiness.
|I bought a couple extra Happy Tee's to give out to random|
|Two of my grandson's, bought them Oreo's and Kool-Aid|
something their mom doesn't buy them. good thing for
grandma's to bring a treat every once in a while
instead of the apples and bananas #HappyActs
|One of the Happiness Walls from today--love when parents|
participate and encourage their children. What a great
Dad--no hesitation at all.
|How cute are these sisters? They are going to fill the|
buckets of others who need it with their love
|Another mom showing her children the value of|
Happiness and sharing in their lives
|These are elementary school kids, no one helped them|
come up with these ways to share happiness..
another tearful moment
|Some of the cute notes from one of the boards the|
children wrote on
|I love these happy people for coming graciously into|
my life a year ago.. I love them
For the anniversary of this day, I intentionally made plans. The two walls of Happiness were so fulfilling, more than I thought they would be. With the help of Carrie and Lindsay we set up 2 walls at elementary schools. What a complete gratification to see every student want to participate, to watch parents instead of dropping their children off they got out of their car and walked their children to our wall. I was so impressed by these sweet children and parents--if our next generation could share love everyday in some small way, we would be raising a new generation of grateful children.
ONE DIFFICULT YEAR--TODAY MADE IT ALL WORTH IT....This was such a rewarding, fantastic day. Thank you Danny Jones, Elizabeth Decker and Shelli Richardson for never giving up on me.
Sunday, March 15, 2015
The very opportunity for us to face adversity and affliction is part of the evidence of infinite love. God gave us the gift of living in mortality so that we could be prepared to receive the greatest of all the gifts of God, which is eternal life. Then our spirits will be changed. We will become able to want what God wants, to think as He thinks, and be prepared for the trust of an endless posterity to teach and to lead through tests to be raised up to qualify to live forever in eternal life.
The Lord’s relentless answers to my pleading has helped me and has encourage me in times of darkness. Even when I feel the truth of the Lord to deliver me in my trials, it still tests my courage and strength to endure. Lately it feels it will not end, during these times even physical strength is difficult, listening to RS lessons on how to deal with trials and adversity are hard to comprehend. The comments made are even difficult to hear. (sorry just being honest)
I am far from perfect, but I have begun to prepare my heart to be worthy of the Lord. I've had the attitude “Things will work out.” Medical insecurities have not eroded my faith; it has tested it and strengthened it. And the feeling of peace the Lord has promised has already been delivered in the midst of the storm. Other miracles are sure to follow. I expect the miracles to happen, and thank the Lord ahead of time for the miracle that I know is just around the corner.
I watch from a distance how Kayla and Jeremy have embraced the trial they have been faced with. Recker and Ezra are beautiful loving children, but don't mistake their love and affection with an easy road to take. From day to day they struggle, not knowing "what is going to happen next?" Those boys are into everything. Recker and Ezra are both non-verbal so try to imagine their frustration knowing everyone around them can talk. Their only way of communication is by taking us by the hand and leading us to what they need or want. I can only translate my feelings as a grandparent, not as the parent who is caring 24 hours, worrying 24 hours. The special bond these boys have with their cousins and family is unconditional love however, I can't imagine the heaviness on the shoulders of his parents. The responsibility the Lord has given them, is beyond what I can comprehend. I know that I am on a road to be the best I can be so I can live with these perfect little boys for eternity.