Wednesday, March 31, 2010

MAYO medical Journal

Today I went to see my favorite of all my doctors, Dr. PK. He is my reconstruction surgeon, we have a good relationship it's fun to visit with him. I have not seen him since December when I had my last expansion, he called while I was on Spring Break and wanted to see me since chemo is over. He had the biggest smile on his face when he walked into the room, he walked right up to me and gave me a big hug and said he missed me. I don't know about you, but I have never had a doctor hug me and say he missed me before. First he sat and asked how I was doing, then we just talked about life, and the new medical reform. ha ha
He's a smart man, I think he will figure out a 5 year plan, which might include moving to another country, another ha ha. I told him I really don't want to have to go visit him in India. I really, really love him as a doctor, he is kind and compassionate. I hate to see what happens when the new bill that was just signed by President Obama goes into effect, what type of health care will we have? Dr. PK told me today that many of his colleagues have already said, (including him) they will retire and move to another country to practice medicine. He told me today that in Canada there are 3,000,000 people, and there are over 1,000,000 people on a waiting list for surgery. He has a patient who has uterine cancer, the doctors in Canada told her she was not worth them caring for her since she only had a 5 year life span. WHAT? are you kidding me right now? Uterine cancer is easy to take care of, and 5 years is a long time, they could treat her and she could live for 50 more years....not worth it? A year ago she sold her house and everything she owned, moved to Arizona to see Dr. PK and now she is alive and doing fine. OK enough of that.....
Dr. Pk told me that he would like me to be in the MAYO medical journal they are writing. I asked why, he laughed and said "because you are my most favorite patient".... ha ha ha .... "well I know that, but what is the journal about?" he replied "You are only one of two patients that MAYO has ever had a successful nipple restoration on, and there are only 50 doctors in the United States who do it, I am one of them" "oh so this journal is about you?" he laughed and said "no, but it does help that my name is going to be next to yours in the journal" I agreed to do it, my name will not be mentioned but my breasts will be, and they took tons of pictures today, no facial pictures. The success of the nipple restoration is to show patients who do not have to have radiation that they can restore and keep their own nipples.
In the beginning of my journey when I 1st found out I had the VILLAIN the doctors did not think I needed radiation, after my mastectomy is when they found out the VILLAIN had spread and Dr. PK had already done the nipple restoration. I asked him today if the radiation will effect the restoration he did, his reply was it's a crap shoot, we will see.
Radiation burns skin, it's a good chance it will burn the nipples right off, so all the work Dr. PK did may not work. That's OK, I know he wants it to be successful after radiation, but I am not so worried about them, I am just glad to be alive and pray that radiation will be successful. I will see Dr. PK 2 months after my radiation, and start planning for the rest of my reconstruction.
Tonight when I pray I will thank Heavenly Father for my life, and for guiding me to Dr. PK he is MY FAVORITE and he knows what he is doing, we prayed about where to go for treatments and Eric was answered, MAYO has been wonderful for me. I also will continue to ask for guidance and to help my pain go away, I need HIM to help me be strong during the rest of these treatments. Today was a good day, I look forward to seeing Dr. PK in July or August.

Monday, March 29, 2010

Reflections in the Mirror

With all this good news in my life right now I am feeling good, and happy the past couple of days. I am going to enjoy this time right now, I have been so homesick for Blake, but have decided that the Lord can take much better care of him than I can, so I need to just let him go for now and let the Lord do his thing. In May I will talk to him again then turn him back over to the Lord. Thank you Tamy for your Advice. It's a good thing I only had one son, the Lord knew it would be too hard for me to send them off for 2 years.

Have you ever looked at yourself in the mirror naked, like after you get out of the shower? Usually I run into my closet and quickly get dressed, but today I stared at myself for a good 15 minutes, WOW things have changed over the years. Are we as women ever 100% happy with our body? Even when I was running everyday and exercising like a maniac everyday, I was not happy with what my body looked like. But today as I looked into my eyes I saw a different woman, a woman who has endured many trials in her life, that should count for some of those wrinkles I have on my face. I see a woman with a lot of faith, and love for her family and friends more than ever before I love people I never would of given a time of day before, not because I didn't care for them but simply because I felt as if I didn't have time. I see an imperfect body, maybe even a little sick and frail, but inside that imperfect body I see a stronger woman, a woman willing to stand up for her beliefs at any costs, even if I'm the only one standing. Today I am able to look past the imperfections, and more importantly understand that imperfection is in all of us. The Lord does not expect any of us to be perfect, he expects us to come unto him and love one another. Interesting to me, since for most women it is so hard to love what they see in the mirror staring back at them. I never thought I would love the woman staring back at me, but I do, even with my bald head and my face so fair, no eyelashes or eye brows. The past 8 months has brought to light a new perspective on life, too bad I waited 47 years to come to a clear understanding of who I am. I wish I could talk to all young woman and tell them don't wait for something tragic to happen in your life, be faithful and strong now, come to see yourself like the Lord sees you- BEAUTIFUL- HE loves each one of us, and even though we all look different, when we know who we are we learn that in the Lords eye it does not matter, because we were created by him, and HIS is an unconditional love.

Wednesday, March 24, 2010

Good News

When I get labs taken I usually have to wait at MAYO for over an hour and a half to get the results to my doctor before my appointment, when that happens the last couple of times I like to journal about what I see and how I am feeling. I just purchased a salad and waterbottle, I pulled out my debit card and for some reason it was declined twice, the little old man working at the MAYO register looked at me and said "no problem, just take your food, I don't like to see people go without food" at this point I'm thinking "is he serious?" then he said it again I thanked him and off I went to my usual seat in the corner where I can see the clock and watch everyone who comes in and out. I'm really restless and nervous today about not only the lab results, but also about my life. Today when I entered the MAYO building the smell of sickness hit me when I stepped off the elevator onto the chemo floor, I can still smell it hear in the lunch room too. It makes my stomach turn, seriously?, I think, what am I doing here? I drink my water but throw away the salad, it was not as good as I thought it would be. (what was I expecting from a cafeteria)Everyone is this room is 70 or more years old, with the exception of one guy who is sitting close to me, his entire face is red, when he turns to look at me he has a huge and I mean huge (the entire right side of his face)
tumor on his face, he is probably in his 20's, he is alone, where is his mother?
I thought to myself "I wonder if he looks at me and thinks, "boy I'm glad I have all my hair?" because when I looked at him I thought "geez, I'm grateful I don't have to deal with that" My thoughts go to my own son who is serving a mission in the DR, he is about this boys age. Oh how I miss him, I am looking forward to Mothers Day when I can hear his voice. I'm sure being away from his family right now has been really hard on him, every email I get he says he prays for me all day long, and today I am wanting to cash in on all the prayers that have gone out for me.
Now I am staring at the clock it moves so slow, 20 more minutes until I check in to see the oncologist. Sometimes I feel like my life is in slow motion, I have always lived in a fast motion, with something to do or someone to take care of everyday.
When I am in public I look around at all people who are healthy and wonder if I remember what it feels like to NOT be sick, I'm jealous. Time to check in.
The nurse called my name and I went with her, 1st blood pressure PERFECT, 2nd weigh in I lost 8 pounds (good) 3rd waiting again in the room for the oncologis, it's freezing in here the nurse brings me a warmed blanket. The doctor comes in with a big smile:
dr: "your labs came back NORMAL"
me: "what does that mean"
dr: "it means something you are doing is working, I had a whole new regimine lined up for you to start this week, I have never seen anyone go from the lowest white blood counts and platlets to normal that quickly, we are very pleased"I left her office knowing exactly "what I was doing" relying on prayers and fasting, it works! The 1st phone call I made was to Eric, we both cried happy tears.
My sister Sonya told me earlier today that her family was fasting and praying today for me. The faith of so many people is a powerful thing, I know I have a long road still but today I am celebrating good news. Eric came home from work picked me up and we ate a salad at WILDFLOWER BREAD CO. I think it was perfect, expecially since MAYO does not know how to make a salad.
Oh yeah, and today was email day, Blake is doing incredible, six months yesterday,what a good day.

Saturday, March 20, 2010

Mexico Spring Break 2010

Mysti and I downtown

Me with the local culture

Mysti Ivy and Eric

Eric and I sharing a drink

Anthony Gruninger Ivy Bryton Maddy Taylor Haleigh and Emily all in the back seat of Erics truck

Mysti, Taylor, Maddy, Bryton, Ivy, Me, Kaitlyn, Haleigh and Emily

Kaitlyn and Brian

Me Haleigh and Eric

Maddy Haleigh Taylor Emily

Kaitlyn and Brian Eric and I

This week for me has been the most relaxing wonderful spring break I can ever remember having. Eric and I invited Mysti Brown and her 4 girls to join us at our condos in Mexico. Saturday morning at 4 am we left, Eric told Mysti to be on time or if she was to arrive at our house at 4:01 we would be gone, we have an ongoing joke with Mysti about being on time, (she is notorious for being late) we wanted to go early so we could have an extra day to enjoy Kaitlyn and Brian they had to leave Tuesday to make their flight home. I was so happy that they were able to come from Utah to be with us, and really sad that Kayla, Jeremy and Recker could not come because Jeremy had to work, I miss my little grandson Recker and can't wait to see him when we get home.
This has honestly been the best therapy, my goal was to get away from the VILLAIN, or at least distract myself for a week, long enough to laugh and enjoy my family and friends. Everyday has been a distraction, fun filled, good food and incredibly relaxing. Although the VILLAIN is next to impossible to stop thinking about (especially when I am the only one on the beach or at the pool with no hair) I spent alot of time in the condo relaxing, one day I was at the beach with everyone and the Mexican vendors were walking the beach, one of them approached us and asked us if we wanted our hair braided, I took off my hat and said "how much?" we laughed it was so therapeutic even the vendor laughed.
Before we left I was worried about whether or not Mysti and her girls would be "weirded out" if I walked around the condo with no hat. Exposing my bald head is something I am sensitive about, I know I have posted pictures of myself on my blog but seeing it in person is different than actually seeing it alive, walking around talking. I asked Mysti if it would be ok, or if she thought her girls would be effected by it, Mysti being the sweet wonderful friend that she is looked at me and said "of course it will be ok" Still even with her support I felt like taking my hat off and walking into a room of people would be extremely difficult. I now have lost all my eyelashes so I look even more bald, but I did it I took off the hat and Mysti and her cute girls made me feel like nothing was wrong, like I was just a normal person, and for one week I felt like I was one of the girls. I have not had that much fun, or laughed so hard in over 8 months. It felt so good to know that part of my personality was back, that I could not think about the VILLAIN and for 7 days enjoy my life.
Mysti and her girls, Emily Holicky, Eric and Haleigh were so fun. Mysti and I have been friends for over 12 years, I love her so much, we have been through alot of things with our children, many, many trips for dance with the girls, and her son Wyley I love like my own son, he and Blake have been friends for years. We have laughed and certainly cried together, we have shared experiences together that have bonded us together as friends for eternity. She is always willing to serve other people, I love that about her. During this time of my VILLAIN experience I have appreciated her so much for her service to my family. She does bring out the silliness in me, and for this trip especially I was so glad she was there.
The week before we left for the trip I had a doctor appointment with my oncologist. I was told that my white blood counts were extremely low, my blood also was off, the doctor told me that they were concerned that the chemo did not work as they had hoped. I came home and cried to Eric about it but decided not to post anything about it until we got home from the trip and had time to tell our children and family. I was upset when the doctor told me, I cried, and she actually cried with me, which is unusual because she has never shown any emotion. (she is actually my oncologists assistant) We were hoping not to have to see any doctors in March, but so far it looks like I will only have last week off. I need to go back this week for more blood work, then we will know more, I am hopeful that the results this week will be better. I continue to pray and ask the Lord to bless my family and to help me understand what his plan is for me.

Tuesday, March 9, 2010

My Smile Experiment

MAYO rebooked my appointment that they cancelled last week at the last minute, so I went by myself today. I decided when I woke up that today I would make eye contact with as many people as I could and just simply smile at them.

This is what I saw today at the MAYO, a blind man with his seeing eye dog getting into the elevator with me, I did smile but instead of eye contact I said "hello, how are you today?" As I waited in the beautifully decorated waiting room I looked around and saw so many sick people, everyone in their own world, I wondered what each person was there for. I over heard the lady sitting next to me telling her friend that this is the end, she does not have much time left, she is dying, my eyes filled with tears as I listened to her heart felt worry for her life, they called her name for chemo, and off she went. I looked into the eyes of a lady in a pink breast cancer baseball hat, her hair was gone just like mine, I smiled and she smiled back with a nod of her head, as if to say "I understand" and then they called my name, and off I went for my lab work, I smiled at the Liz who was my nurse today she smiled and said "how are you, and why are you walking so slow?" I explained to her about the neuropathy and she hugged me with a sincere strong hug, I teared up again. ( I do that a lot now) today because I know the people at MAYO are in my world they understand what it means, I don't have to explain.

I had an hour and 40 minutes until my next appointment so I went to the MAYO cafeteria to grab some lunch. I watched a lady yell at the person working at the grill, she was upset with him because he forgot to give her a pickle, she looked at me and shrugged her shoulders wanting me to agree with her disgust, I just smiled and she looked away. As I walked to my seat I saw a man and woman sitting together, she was in a wheelchair and very crippled, she could not hold her head up, I smiled at him and he smiled back. I watched as many couples or friends discussed their medical issues over lunch, one couple I watched never talked or looked at eachother.

In that room there was not one person who was my age or younger, I watched an older couple sharing lunch, he was careful to split the cheesecake right down the middle and give her 1/2 then he made sure not to start his lunch until he knew she was comfortable and happy, they laughed and enjoyed their time together. I watched MAYO volunteers walking around to each table asking if they could help take trays, or if anyone needed water, just then a man walked by who distracted me, he had a ponytail down the middle of his back, I wondered when mine would be that long again, and why his was... ha ha. I saw angry people, sad people, people with tears, some with hair some without.

My experiment today came to the conclusion that most people smiled at me no matter what their condition some even indulged in conversation with me. The ones who didn't quickly looked away as if I had just injected them with some deadly desease. I'm not sure what makes people happy or sad, but I do know it's curable because it's a choice.

I decided today to be happy I was not the lady in the wheelchair who will never walk again, or the woman who will never hold her head up to see the beautiful blue sky, or the man who walks with a seeing eye dog because he is blind. Be grateful you can comb your hair everyday---even on a bad hair day, be glad you have hair, never take for granted your legs if you can walk or run with no pain you are lucky, if you can hold a baby in your arms or write to a are blessed to have hands and arms that work. If you have a mouth you can smile, and maybe your smile will save the life of someone who is feeling depressed or lonely, thinking they have nothing to live for. Everyday we all make a choice when we wake I going to be happy and serve someone else today, or will I waste the day doing insignificant things, being angry at things that in the eternal scheme of things really does not matter, at the end of the day can we say "I made a difference today?" I want to make a difference, be it even within the walls of my own home, don't look back, look to tomorrow to make those changes wake up in the morning and do something worth while, close each night knowing you made a difference. Never let your knees tire of bending and asking for the help you need, ask HIM to guide you to those who need help.

Saturday, March 6, 2010


I am now officially the "babysitter" for the most beautiful little boy in the world. Kayla had to go back to work last week, she brings Recker over around 6 in the morning and Grandad Eric takes over, he loves the time he gets to spend with Recker every morning. Usually around 8 he brings Recker into me so he can get off to work. It is a perfect match, Recker and I, he still sleeps alot and I still sleep alot so we do it together. He is a really easy baby to take care of, Heavenly Father knew I needed this little guy to help me get through the "junk" in my life. I love every minute I spend with him, he recognizes us now and smiles, he loves to have his clothes off, he smiles, he loves when bonbon gives him a bath, he smiles, he loves when we make funny noises, he just smiles all the time..... I love when he sticks his tongue out when he smiles and he has a little dimple next to his right cute.
Can you tell I am a proud bonbon?

Wednesday, March 3, 2010

Chronic Neuropathy

Chronic neuropathic pain affects about 20% of woman who have breast cancer, and used TAXOL as chemo treatment. Guess who has it? It has been really difficult for me to sit down and blog, because my fingers are numb sometimes... from the neuropathy, and my legs, feet and back are in constant pain. I called the doctor today about it, I was advised that chronic neuropathy in breast cancer patients does not go away. However, I talked to someone who had it and she told me hers eventually went away. I am hopeful that the Lord will bless me just one more time and allow the pain to leave my body.
Many people have asked me how it feels, it is difficult to explain, my bones and muscles just ache 24/7. When it hurts the worst I cannot even walk without the pain penetrating my mind, body and soul. There has been so many times that I have been in a fetal position on my bed crying because of the pain, Eric rubs my legs, but the truth is I am not supposed to get my legs or back massaged because it can cause blood clots. Even when he rubs my legs it is only temporary relief, as soon as he stops, the pain begins so I guess that is not a solution either. I have been given pain medicine, they are narcotics and they do take the pain away however, I know I cannot be on those for the rest of my life. I try the natural oils and some other options but that does not help either. It truly is the worse pain I have had to endure on a long term basis, it is hard to deal with when I know it is not going away any time soon, I would love if the doctor would say "OK allow it a couple of weeks after chemo, then it will leave". I asked the doctor if I would be able to run again or exercise again, she said "most people are OK with just walking a little everyday" Well I wanted to say " I am not most people lady, so just watch what I can do."
I will run again someday, I will cycle again someday and I will do all the cardio and lifting weights again, this is just temporary and this pain just helps to remind me of how hard I need to still fight to get my body healthy again and be the athlete again that I was. It would be easy to give up and say that I will never be able to do those things again, but I will I know I will.