First, before I start on today's excitement, I have not been able to blog for awhile, not because of the neuropathy, because this is a sacred place I like to come, to get real with my feelings and come to a higher ground of healing--I'm having a hard time coming to grips with the new me--I don't like it--I feel like everything that has lead up to this moment was supposed to prepare me, but it hasn't and I feel like a failure in so many ways--with this being said I want to lead up to today's events.
May 16th -Eric's birthday--I called and asked him to please NOT come to the hospital, I wanted him to spend some time with the family and grand kids--do something fun--being at the Mayo Clinic AGAIN is not fun--he had a hard time agreeing with this--but I insisted.
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| Ezra and Recker with Grandad on his birthday |
I wish I could of been there, but so glad to get this picture text over to me--I love these little guys and really miss them. Eric was able to go to dinner with the kids and have a great time with the grand kids.
Saturday May 17th
Today, Eric brought me home from the hospital--as happy as I am to be home--I am still drugged up, and cannot wait to get myself off of these pain meds. If I listed the drugs I am "supposed" to be taking it would blow your mind--it does mine--I know they are doing this to keep my pain in control, as it was an extreme pain while we were in the hospital. So I started out slow taking myself off of them to make sure I was not in any pain what so ever-- I knew I did not want to go through the pain I had originally felt, so have taken every precaution to make sure I am OK. The 1st couple of days I slept hours upon hours--then tried bit by bit to slowly wein myself from the medicine, today I am completely off of all pain medicine and back to the regimen I was used to before this episode. We arranged for a home nurse to come in and teach Eric how to administer my antibiotics twice per day trough a picc line in my upper arm. Every morning Eric administers my medicine through my picc line--then that evening 12 hours later he does it again.
Last night the home care nurse came by to take blood--it was a difficult take--my picc line was clogged up and it really took her over an hour to pull any blood out it felt as if blood was being pulled from my heart.--and I think she just barely got what she could.
Today Wednesday May 21st
Eric and I got up early, he has arranged to be with me at this appointment today, and then head to work after. First he had to access my picc line, for some reason it was extremely hard out of one side it clogged up too--so he tried the other side and it was a struggle with him putting all of his weight into it he was able to finally push through. Once that was done we headed on our way to Mayo Clinic--I looked at myself and told Eric I don't think I have ever left my home looking like this, he didn't see anything wrong with it. My shirt was wrinkled, I had no make up on, bruises on my face. arms and hands --- I am a mess....simply put. To walk into Mayo Clinic today was excruciating, the smells hit me from every direction--I could see the people I passed looking at me as if I had a massive tumor growing out of the side of my face, my thought was...I should of left my sunglasses on, worn a mask and I would look perfectly normal here--when we checked in the receptionists saw my picc line hanging out of my shirt and asked me if I was supposed to be on the 7th floor at the hospital (equal to the 3rd floor on the Shea Campus--ports, picc lines and chemo) I said I have no idea, the lady who called yesterday asked me to come for blood work to be done before my appointment with Dr. Barr's, I assumed she knew it was to be taken from my picc line. She said no, it was to be drawn from a vein on my arm. I was immediately called into the lab, where she proceeded to find a vein--nope not that one, after several attempts with not enough blood being drawn, she tried one last time in my right hand. Yay, it worked she was able to get just enough blood, and in the mean time I found out the blood work was being ordered by my endocrinologist who had recently changed my thyroid medicine, and was checking to make sure it was a high enough dose--I suddenly remembered I had that appointment with her a couple weeks ago so she had no idea what I have been through these past couple of weeks, no wonder the lab draw from my arm. As we stepped out into the waiting area, there is always something going on, but today I was not in the mood. Still a part of me watched as people came in and out, today there were two people who stood out in my mind. One was a doctor, who came in his scrubs sat down looked around, our eyes met and then he was called back for labs. In the other corner of the room was a man and his wife waiting to see an ENT, I'm assuming when he tried to speak he had to activate his voice by putting his finger on his throat. I watched him scare the lady off her chair next to him as he leaned in to ask her a question about some video game she was playing, she apologized and he then returned the apology. This brought the 1st smile to my face in weeks, why? Maybe because I saw that they too, found humor in it.
We were called back sat in a room where we waited for a very long time, but not longer than my appointment was supposed to be, we had just gotten there so early for lab work. Dr. Barr's came in with his resident Dr. Coursin (Andy) I have been in such a foggy head, the second I saw him I remembered seeing him quite often at the hospital. A quite familiar face, one I enjoy seeing, he's quite, yet seems to know his stuff.
I told Dr. Barr's I had completely taken myself off of all pain medicine--I think he was surprised, but mainly wanted me to be honest with him as to whether I was feeling the pain or not. I reassured him and Eric, I am not in any pain, none--and that I am trying to de-fog my brain of all that junk. He agreed it was OK as long as my pain was gone. Then he took a look inside my ear--it is really corroded with dried blood, I was hoping they were going to clean that out today--nope he filled it with bacitracin which was like filling my ear with Vaseline, and the hotter it gets outside the more it melts and makes a mess. Then he asked me to come take a seat next to Eric. He proceeded to tell me exactly what happened to me during my stay at the Mayo Clinic Hotel (Hospital) The nerve that he covered with a graft of skin, within days became gangrene, in other words the nerve died. He gave Eric a picture of it, the flesh around it is healthy, but the nerve itself died--and is now being covered by packing in my ear.
OK, so what is the next step? Dr. Barr's begins explaining, he has a team of Doctors available to help in surgery on June 3rd. There are some options, minimum go in and cover the nerve with a graft of muscle and wait. Or go in graft over the nerve, have another doctor there to do something with my nerves in my tongue to reposition over to the nerves that are not working in my face. I'm sure I got some of this wrong--the whole time he was talking I felt like I was in a peanuts cartoon, the teacher is talking but my ears are not understanding--waaa waaaa waaa-- I continue to look at Eric and make sure he is taking notes. Eric said "I want my wife back, I want her to be HAPPY again" Dr. Barr's said "if you're asking me if the right side of her face is ever going to be the same again, the answer is no, I'm sorry but the nerve is dead, we cannot bring something back to life that is dead.....You need to start loving the wife you have, and forget about her face ever looking the same again"......I could feel the tension, Eric did not know how to respond except "I never said I didn't love my wife, I just want to see her happy again" "She needs to learn to love the new Monya, I was fond of the Monya you and I used to know, but I also like the new Monya" When he left the room for a moment, Eric and I looked at each other, with questions what should we do next? are we being hasty to make a decision? Actually, just the opposite we looked at each other said we are not making any decisions today, we are going to wait, pray as a family and make a decision when we are ready. I know with nerves there is a window of opportunity and we do need to make decisions, however, not today, not now, please.
Fighting back tears, trying once again to be BRAVE--I think I have finally gotten to a point where I am ready to say "why?" I've done all that I've been asked to do, everything Dr. Kreymerman, Magtibay, Northfelt and now Barr's has asked of me. I have lived a life worthy of feeling joy, I know my tears are not meant as a surrendering but I'm tired, this pain is not going away, and I'm not talking about the physical pain, this pain comes from deep within me--it makes me question everything I know to be true, everything I have preached to my children to live by--but I also believe there are times when life throws us into storms that are unexpected, and it's at those times we are forced to face our deepest pain--it is then that we have to dig deep and decide if the pain is worth it, I know this life gives us disappointments and HARD things come. I have been forced my entire life to stand up, be BRAVE, put on my big girl panties and move on. Today, I'm not there--I just want to cry and I deserve to cry until every drop has left my body--
After leaving Dr. Barr's office, we headed up to the infusion floor, 7th floor at the hospital this is where the chemo is infused. The antibiotics I am being infused twice a day are very strong, and cause my body functions to not work as well as I am used to--I spent a bit of time int he bathroom, several different times while waiting to called. Eric took care of checking me in and getting out beeper and I positioned ourselves in chairs we could see the outside mountains, dessert and sunshine. My mind kept thinking about Dr. Kreymerman, most of the time I look forward to these visits knowing I will be able to see him and Heather, even have lunch with them in between appointments. Today, Heather is not available for hours. I'm nauseous taking in the smells of this floor, this hospital where I was just discharged from last week--it's more than I can handle--just when I close the door on this place it let's itself back in, for some reason it enters my life uninvited. I let you go, but you find me again, I'm not stupid you take over my heart piece by piece, I can't help but wonder how many times I can pick up these pieces and start over again. I watched as a nurse came and got Shirley, pushed her back in the wheelchair asking her if she was ready for her IVIG infusion today? What kind of question is that? Who the heck say's "Hell yeah, I'm ready let's go it's a party back here?" My thoughts went to Sonya, my sister she gets IVIG infusions once a month just like Shirley, Sonya has always been so brave, and faced the storms with integrity, I love her and look up to her so much, for many years she has been the matriarch for me--and now even she cannot calm this storm I feel raging up inside of me.
This is not just a passing through, this one is BIG, just as soon as I feel like I'm in a good place and can move forward, like I've let this go, it always finds me again. --my soul is feeling like a resting place--- I can't handle anymore--my body is not a place of dwelling, I wish I could say the tears release my pain but in so many ways I feel like I am constantly learning to breath again and again, this time this is more than tears, it's the sobbing, not wanting to be left alone I can't handle...yet at times wonder if that is my answer--I'm sorry this is so real and raw. I know God did not make my body to be a place to constantly feel this pain. I wonder how long do you intend on staying this time? The depression and despair, the VILLAIN taking on a different name.
I watched as plenty of people came in and out of the infusion unit today, some bald, some carrying their chemo packs on their backs in a backpack--I was trying every way I could to have a pitty party, then someone else would step off that elevator and give me a new perspective--a man with one leg, being pushed in a wheelchair by a not so patient wife, or husband and often wearing an oxygen tank. It took quite a while before we were called back, but finally a cute young well qualified pcc line technician took us back into a room, she could not access it and had to put some medicine in the line and asked us to come back in an hour. We went down the elevator I just wanted some fresh air. I heard over the loud speaker a "code blue" at the entrance of Mayo, seriously? Could anything else happen today that would push me over the edge? Right in front of us we watched a woman take her last breath, they worked as hard as they could, I watched and wished it was me. What a hell of an exit--drop down at the entrance of Mayo Clinic on your way to your car, take your last breath and be done, done with Mayo, done with pain, done with having to make medical decisions.......Today, I have no grace left in me, no patience, no remorse, no regrets, no feeling.
Eric was waiting for me in the cafe, he wanted to grab a bite to eat--none of this looks good, so I'll have bit of everything-- grilled cheese, tomato and arugula sandwich, hot dog (something I never order) minestrone soup and a white chocolate raspberry bundt cake--none of these were eaten--just itty, bitty bites--As I walked outside to find the perfect table, I glanced over and saw Tony Mendez PA to Dr. Barr's he didn't even recognize me.....I always said "since I've done away with sugar, processed foods and white flour, per Dr. Northfelt's request, if my cancer comes back, my final meal will be filled with all of the above" however, today showed me the exact opposite--none of this looked good to me, none of it tasted good, everything I eat tastes like metal--this is from the infusions of antibiotics I am getting, I want to throw up every time I try to eat--and it mirrors so much of how I felt going through chemo. If I am honest I can say I would much rather be sitting in front of Dr. Northfelt having him tell me...those exact words "your cancer is back" at least with cancer it was difficult to go through but the VILLAIN did not win, in fact I really hate when people say "she or he lost their battle to cancer" no they didn't, most people who go through cancer treatments come out on the other side of it a better person, a stronger person given a chance to redeem themselves and help others to do the same. This thing with the nerve in my face, I feel is not going away--I'm not sure how I can recover from this. I feel like I have a load so heavy I can hardly breath right now--my strength is gone, I'm weak--I don't think all of my life I have ever felt this emptyness I'm feeling now. I've asked friends and family to pray for me, to ask the Lord to heal me, or to give me strength to endure whatever is coming next.....how many times do I need to do this? Oh geez, I know the answer to that before even finishing that sentence. This a world we live in where nothing is certain, but I know this--HE LOVES ME-- and ---EVERYTHING HAPPENS FOR A REASON--However, today, right now, I don't want to hear that, I'm sad, I'm scared and I'm angry.
After we finished up my picc line on the the 7th floor, we were given the green light to go home--I ran to the elevator, got off on the 1st floor and ran past the piano player, as I passed the area where the lady had just passed away less than an hour ago, I glanced over looked at the people sitting in the chairs surrounding that area and said to Eric "I wonder if that guys knows and angel got her wings today, less than an hour ago, exactly where he is sitting" and then I ran as fast as I could to the car I mean I was like a bull trying to get out of the pin--Eric said "sweetheart, you really need to keep your voice down while you're walking or running through the exit"
This has been a very difficult week, looking in the mirror I am a different person--my face has partial facial paralysis, been told it is permanent--I don't want to look in the mirror--this is much worse than when I looked at my breasts for the first time after my mastectomy, at least then I could cover them up, have them fixed, and the baldness was hard but it never defined me--it grew back. Yes, this is much worse... how can I continue in this body looking like this? So many will say "but your alive" or like Dr. Barr's said to me today "but you have your eyesight" those words pierce my heart right down to my soul--I know those are supposed to be inspiring and help me to move forward-but right now I need to process what happened today.
