Cleveland Clinic Day 1

 

TUESDAY, JUNE 3, 2014

Cleveland Clinic Day 1

This is the picture Dr. Barrs took during surgery--the greyish is the graft he did, and it died within 5 days.

Today I spent  4 hours with a specialized doctor at Cleveland Clinic. I was highly impressed with his bedside manner and credentials; however, he had not received any of my reports from the Mayo Clinic. I got them and actually faxed them and emailed them ..... they had nothing, none of my films, path reports, lab report, OR notes--we spent, luckily I had copies of it all with me, but it really was frustrating to have to tell the story all over again and again--The doctor's PA came in to discuss why I was there--she looked at me and didn't seem to have much compassionate--for some reason, I was so frustrated trying to get all my paperwork in order--she said the receptionist who usually brings these referral patients paperwork to them to study before the patient gets there was out of the office, so they had not read anything or seen any pictures from my surgery---I told Diana, I was worried this would happen.

I sat telling my story--the long story of my ear--from the blow to the ear when I was 3 to the current status. I felt like she was looking at me but not listening--it felt like she had no connection with what I was telling her. She left the room to talk to the doctor, and soon he came in, and again I had to tell the story as he typed it into his computer. He seemed concerned for me and could obviously see my face was affected. He made all the routine checkpoints to see the damage to the nerve. Then he explained that the ear needs to have a complete debridement of the ear cavity and canal. He said he could not and would not touch any facial nerve surgery until the ear was clear of all infection and was healed. He explained, and I have agreed with this all along, and so has Eric.....no plastics doctor should be going in during ENT surgery to repair the facial nerves. When he read the reports from Mayo, he was very complimentary of all the doctors I have seen. He mentioned Dr. Kreymerman and Heather and said he likes both of them very much. Dr. Kreymerman trained here at the Cleveland Clinic. It was nice to have a doctor with a connection to some of my doctors at Mayo; for me, it's reassuring. He agrees with Dr. Barrs about the window of opportunity to get any nerve damage a possibility of repairing. However, does not necessarily agree with taking the mussel from my tongue.

I have until April 2014 to have all my healing done from my ear before he can touch anything else. He explained how the process works. Basically, he made an appointment for me on Thursday with an ENT here in Cleveland, then Neurology needs to be involved because of the skull involvement. We asked to see a doctor I was told about that is an ENT--he left the room to get those organized, and I sat in the window seal of his office looking out into the beautiful green trees and grassy area. It was surreal to me. It takes a lot of energy to keep my mind focused on the HAPPINESS I have in my life. I have so much to be grateful for. This place feels right; I know I should be here. I know one of these doctors can help. My eyes started to bubble up with tears as they trickled down my cheeks, finally landing on my arm. I was a mess, and I said to myself, "how did I get here? Why am I here?" (not in Cleveland, but in my life) The doctor came in, and we chatted about my favorite doctor Doctor, Peter Kreymerman, and his PA, Heather Lucas--he said PK is a great man (I've said that for 5 years now, and Heather said he is sweet and compassionate, and an excellent resource for me. He then did a quick assessment of my ear, the routine facial tests, like raising our eyebrow, smiling, etc...he mumbled to himself, "yeah, there is nothing animated about this right side."  He then explained he could not do what I needed to be done on my facial paralysis until I got the ear healed, also that I would have several surgeries to fix my face. I cried; I never call in front of my doctors; I suck it up and do what they say to do. This time, I'm exhausted and starting to feel the burden of this all; my shoulders are heavy with responsibility. I'm glad Diana was there; with her nursing background, she got all the answers to questions I would have never known to ask--one of them is that after the debris is cleaned out and healed, instead of taking a mussel from my tongue (which in his words is old school and does not bring animation back into the face, he takes the mussel from my inner thigh) or another procedure could be to take a nerve from the left side of my face and pull it over the right side, and hope for it to connect.

Within a few minutes, his PA came back in the room and told me she was able to make an appointment with this doctor who specializes in my issues; she said she would try to get me squeezed in tomorrow, but for sure, I have an appointment with him on Thursday, neurology will also be on my itinerary. I began to cry again, Diana teared up, and the PA had nothing to say, but she, too, teared up. I left there feeling like this was a waste of my time; Diana felt very hopeful and even told me the differences between what I heard at Mayo "your right side of your face will never look the same as the left, and you and Eric need to get used to it) Is that this doctor today gave me some HOPE. I'm exhausted and need a good night's sleep; my mind has continually been on this ear problem, and I have no time to think of anything else. Still praying for a miracle.

What is Normal

 

TUESDAY, FEBRUARY 15, 2011

What is Normal?

It's late; I'm tired but can't sleep another insomnia night. My appointment Thursday was canceled. I'm not sure if I should be happy or upset. Still, I was looking forward to hearing some results and him telling me how great I was doing. I miss seeing doctor Kreymerman. I thought about him when Eric and I went to see a movie with Adam Sandler as a plastics doctor. I just don't remember the name of it. In the past year and a half, there have been very few weeks that I have not spent at least one day at the Mayo. It has been 5 weeks now, yippie. Maybe there is a light at the end of this tunnel. I have so much to look forward to in my life. Blake is coming home in 7 months. We will get his release date in April, so looking forward to April.
My hips, especially my right hip, constantly remain in pain. Last night as Eric lay in bed, I told him it felt like when I had chemo treatments this time last year. My legs were hurting so bad, he rubbed them, and it helped. What is NORMAL? If any of you know, please give me a clue because that is my goal right now, and it's hard to have a plan when I can't even remember what it is.
One thing I am grateful for today is that I finally have hair I can blow-dry and tuck behind my ear. That is cool. This time last year was shiny bald. Having hair, I can actually run my fingers through is way cool. People always ask me if I will let it grow out again, think I am... I love long hair on women, but boy, this short hair is easy to manage. I wish I could sometimes d put it up in a ponytail, and I want it to grow out a little more before Blake gets home.

I think life will finally get back to normality I can handle; I'm not sure what that is yet, but I will make it work for me. I love you all so much.

Vulnerability

 

TUESDAY, DECEMBER 28, 2010

Vulnerability

I had my appointment this morning with Dr. Paul Magtibay. I was nervous going into the Mayo this morning but not worried about seeing Dr. Paul Magtibay. I sat with Dr. Paul Magtibay and explained to him some of my fears. I told him that last week I prayed about him. That same night as I was researching him, I found a video that brought tears to my eyes. He was explaining to the people that, 1st and foremost, his family, wife, and children come first in his life, then his patients and practice are a close 2nd. I explained to him today how moved I was by those words he spoke; after hearing the sincerity in his voice, nothing else really mattered to me; I had my answer. I knew I could research and find out his credentials and even find out from other Doctors, including Dr. Peter Kreymerman, who had nothing but great things to say about Dr. Magtibay; what a great doctor he is. 

Still, it was more important for me to know what kind of man he was. As many know, Hysterectomy has not been a priority. Without explaining why, I will just say I have some personal fears, immobilizing fears that I have never explained to a doctor before but felt comfortable enough to talk to him today about it. He listened with intent and was very comforting and assuring.

We looked at my ultrasound results, and he said my ovaries look good and clear of masses or cancer for now. Then he explained that I had some options to find out more about the Uterine cancer, but even with trying out the other options, they would not be a solution. I asked him what his suggestion was, and he said he would advise a HYSTERECTOMY .... duh I knew that was coming. 

Please, if you are reading this, do not send me an email saying this will be the best thing I ever did. My fears about not having a hysterectomy have nothing to do with the actual surgery or recovery, it is very personal, and I choose to not blog or talk about it. I do not want to offend anyone, I just have some deep emotional fears and scars that have nothing to do with the ACTUAL Hysterectomy,  and when I receive those emails, it makes it worse for me; I sure love all of you for your prayers and concerns. Still, my situation is slightly different from the average woman getting a hysterectomy. I do look forward to not bleeding or having those horrible cramps. My surgery is on the schedule for next Friday. January 07; I will stay in the hospital and be down for a few weeks. My anxiety level for this particular surgery is extremely HIGH, so please tread softly with me; I need your prayers. 

After my appointment at Mayo, I met Haleigh for lunch; when I got up to refill my water cup, a woman sat next to the cups with her son. She said to him, "look at that lady's hair" I looked over to see that they were talking about me. The mother turned her head away when she knew I realized she was talking about me, then the son just laughed; the mother then made a comment as I walked back to my chair, "I seriously hope she did not do her hair like that purposely"  tears filled my eyes, it really hurt my feelings. I usually don't let those types of people in my life; it's easier to just walk away. But today, I feel a little vulnerable. 

Surgery Cancelled

 

MONDAY, OCTOBER 11, 2010

Surgery Cancelled

I've had horrible anxiety and a migraine that won't go away since Friday when I met with Dr. Kreymerman.... not because of him. Everyone who knows me knows I am totally confident in him and that I think he can do no wrong. I can't quite put my finger on it. Maybe I am worried about the recovery. Perhaps I'm afraid of the possible side effects. Who knows? All I know is it's really worrying me. This was my timeline today:

7:30 am wake up with anxiety and figure out a way to get my mind to Paris on a bike in the woods

8:30 Recker and Kayla come over....ahh I get to play with my favorite guy in the world

9:30 clean out the freezer... it's been a while

10:30 clean up Recker's mess, he got into a bag of flour and spread it all over the kitchen, and I loved watching every second of it

11:30 phone call from Mayo Hospital confirming my surgery tomorrow.  and getting all my 

12:30 lunch and watch Recker take a nap...there is nothing like watching a baby sleep

2:30 Phone call from Michelle at Dr. Kreymerman's office, "Pease be at the hospital by 5:30 am. There is nothing to eat or drink after midnight, and if there is no nurse to check you in, then proceed to the 2nd-floor check in."

3:45, Mayo Clinic called from Dr. Kreymerman's office calls to tell me they made a mistake with my insurance.
"We are so sorry, but we entered your information incorrectly; as a 42 year old medicare patient, the insurance company declined it. Then when we called them back, we were on hold forever, then disconnected, and now their office is closed".

Me: "No problem, people make mistakes, I understand. Now, what do we do?"
Office: "We will try and get them to approve by tomorrow, then call you back to re-schedule."

4:00 anxiety attack; I have to mentally prepare for surgeries.

4:30 Dr. Kreymerman called me, "Hello, this is Dr. Kreymerman.... I am sorry for what has happened; I know this messes up your schedule, especially when you plan for it" we talked for a few minutes about what happened, and my anxiety issues. He is so sweet and kind and made me feel better about my surgery. He also said his wife loved the baby things I made them, and said thank you again.

Dr. Kreymerman said he was not sure that Mayo would be able to get this taken care of by tomorrow, but if they cannot get it, someone will call me, and perhaps surgery will take place Thursday. If not, then we will schedule another date for surgery as soon as they get this straightened out.

So my surgery has been canceled for tomorrow, but I am grateful for a doctor who took the time to call me and calm my nerves just a little.

Be Careful What You Wish For

Those who know me well know that I can be quite a jokester. Growing up, I never had any boobs, and I don't remember really wishing that I had them either; I think I was good with what I was given. Then after I had children..vavoom out came the sisters in full bloom, and I did not like it. I have often been asked if I had implants, or "what Dr. did your boob job" I am always taken back when I hear someone say that because just for the record, I DO NOT HAVE IMPLANTS...and I have said many times I wish I could get my boobs cut off. Of course, my husband was always in opposition to that idea, and we knew it was a joke, but now as I am being faced with what used to be a joke...becoming a reality, I'm scared. In just a few hours, most of my femininity will be taken from me, forever, never to return; the other part of it will be taken from me in another surgery a few months from now. My bishop and husband gave me a beautiful blessing tonight, and I appreciated every word of it. But the bottom line is that my breasts are being removed tomorrow, not by my choice, but The VILLAIN has decided it for me. I trust Dr. Pockji will be skillful that she knows what she is doing. that is not the problem. The problem is me; how do I fix this feeling inside me that a part of my womanhood is being taken from me? How will my husband look at me after? Can I even let him look at me? How long will it take for me to look at me?

I try not to be a vain woman, but I admit I want to look pretty to my husband. It's hard for me to go to bed tonight. When I wake up, I know it's time to go to the Mayo Clinic Hospital and face my VILLAIN. I'm not ready yet. I still have some housework to do, and some wedding plans to get done. Last night I had a terrible panic attack at my sister's house. The reality of all of this is becoming hard for me to handle. Tonight I read the 1st letter from my Son Blake; he is in the MTC preparing to serve in the Dominican Republic. He is studying so hard to learn the language that he only got 2 hours of sleep because he wanted to study. He sent me the most beautiful letter and testimony in Spanish; as I read his words, it calms me and makes me feel better about what I am going to do tomorrow; he has so much faith, and on these days when I am feeling like my well needs to be filled. The people in my ward fill it up with words of encouragement and gifts of Love, Blake's faith will fill the gaps where I need it, and I know for a fact the Lord will pick me up and carry me when I cannot do it myself. I pray tonight that the Lord will strengthen me tomorrow as I face this sudden and awful journey I am starting; I have always told my kids that it's not the start of the race that is important; it's the finish that is most important. 
And I plan on finishing this race in the first place.

LABELS: Breasts, Cancer, Dr. Pockji, Faith, Frenchie, Journaling, Mayo Clinic, The Villain, Elder Williams, The Villain