First, before I start on today's excitement, I have not been able to blog for a while, not because of the neuropathy, but 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 16 -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 grandkids--do something fun--being at the Mayo Clinic AGAIN is not fun--he had a tough time agreeing with this--but I insisted.
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| Ezra and Recker with Grandad on his birthday |
I wish I could have been there, but so glad to get this picture text over to me--I love these little guys and really miss them. Eric could go to dinner with the kids and have a great time with the grandkids.
Saturday, May 17
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 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 I was in extreme pain while in the hospital. So I started slowly taking myself off them to ensure I was not in any pain.
I knew I did not want to go through the pain I had initially felt, so I have taken every precaution to ensure I am OK. The 1st couple of days, I slept hours upon hours--then tried bit by bit to slowly wean 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 through a PICC line in my upper arm. Every morning, Eric administers my medicine through my PICC line; 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 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 is Wednesday, May 21.
Eric and I got up early. He wanted to be with me at this appointment today. First, he had to access my PICC line, which was extremely hard for some reason. Now both sides were clogged up, and Eric was putting all of his weight into it he was able to finally push through, with little blood return. 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 makeup, and bruises were on my face, arms, and hands. I was a mess.
To walk into Mayo Clinic today was excruciating. The smells hit me from every direction--I could see the people I walked past looking at me as if I had a massive tumor growing out of the side of my face. I thought I should have left my sunglasses on and worn a mask. 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. Barrs." 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 insufficient blood being drawn, she tried one last time in my right hand. Yay, it worked. She was able to get just enough blood.
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. Hence, she had no idea what I had been through these past weeks.
As we stepped out into the waiting area, something was always going on, but today I was not in the mood. Still, a part of me watched as people came in and out. Today two people stood out in my mind. One was a doctor who arrived in his scrubs and sat down. He was looking around, and our eyes met, and then he was called back for labs. A man and his wife were waiting to see an ENT in the other corner of the room. 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 and 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 too early for lab work. Dr. Barrs came in with his resident Dr. Coursin (Andy). I had been in such a foggy head the second I saw him and remembered seeing him quite often at the hospital. He is a pretty familiar face, one I enjoy seeing; he's quiet yet seems to know his stuff.
I told Dr. Barrs I had taken myself off of all pain medicine--I think he was surprised but mainly wanted me to be honest with him about whether I was feeling the pain or not. I reassured him and Eric that I was not in pain and was trying to de-fog my brain from 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 to take a seat next to Eric. He told me exactly what happened to me during my stay at the Mayo Clinic Hotel (Hospital). Within days, the nerve he covered with a graft of skin became gangrene; in other words, the nerve died. He gave Eric a picture of it; the flesh around it is healthy, but the nerve died. It was black--and is now being covered by packing in my ear.
OK, so what is the next step? Dr. Barrs begins by explaining he has a team of Doctors available to help with surgery on June 03. There were some options. Dr. Barrs explained the minimum was to cover the nerve with a muscle graft and wait. Or go in and graft over the nerve and have another doctor there to do something with the 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 charlie brown cartoon, and the teacher was talking, but my ears were not understanding--waaa waaaa waaa-- I continued to look at Eric and make sure he is taking notes.
Eric said, "I want my wife back, and I want her to be HAPPY again," Dr. Barrs 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, and we cannot bring something back to life that is dead. You need to start loving your wife 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."
Dr. Barrs looked at Eric and said, "She needs to learn to love the new Monya. I was fond of the Monya you and I used to know, but I also love the new Monya, but I need you both to understand she will never smile again." Eric asked him if we could have a few minutes alone. When he left the room. Eric and I looked at each other with questions what should we do next? Are we being hasty in making a decision? Actually, just the opposite, we looked at each other and 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. With nerves, I know there is a window of opportunity, and we need to make decisions quickly. However, not today, not now, please. I'm so confused.
Fighting back the tears, trying again to be BRAVE--I think I have finally gotten to a point where I am ready to say, "Why me?" I've done everything I've been asked to do, all Dr. Kreymerman, Dr. Magtibay, Dr. Northfelt, and now Barrs have asked of me. I have lived a life worthy of feeling joy, I know my tears are not meant as a surrender, but I'm tired. The 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 have preached to my children to live by. I trusted Heavenly Father; why was he abandoning me?
I believe there are times when life throws us into unexpected storms, and it's at those times we are forced to face our most profound 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 to stand up, be BRAVE, put on my big girl pantie,s 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. Barrs's office, we headed up to the infusion floor. The seventh floor of the hospital is where the chemo is infused. The antibiotics I am being infused with twice a day are very strong and cause my body not to work as well as I am used to--I spent a bit of time in the bathroom several times while waiting to be called. Eric took care of checking me in and getting our beeper. I positioned myself in chairs so we could see the outside mountains, dessert, and sunshine.
I 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 and even have lunch with them 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. When I close the door on this place, it lets itself back in. For some reason, it enters my life uninvited. It allows me to go, but it finds me again. 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 says, "Hell yeah, I'm ready to. Let's go. It's a party back here?"
This is not just passing through. This one is BIG. Just as soon as I feel I'm in a good place and can move forward, like I've let this go, it always finds me again. I can't handle it anymore. I wish I could say the tears release my pain, but in so many ways, I feel like I am constantly learning to breathe again and again. This time it's more than tears. It's the sobbing, not wanting to be left alone, I can't handle. I'm sorry this is so real and raw. I know God did not make my body a place to constantly feel this pain. I wonder how long the depression and despair will last. This is 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 pity party, but 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 a patient wearing an oxygen tank.
It took quite a while before we were called back, but a cute young, well-qualified PCC line technician finally took us back into a room. She could not access it and had to put some medicine in the line and asked us to return in an hour. We went down the elevator. I just wanted some fresh air. I heard a "code blue" at the entrance of Mayo; seriously? Could anything else happen today that would push me over the edge? Right before me, I watched a woman take her last breath. They worked as hard as they could, and I watched and wished it was me. What the 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, and no feeling.
Eric was waiting for me in the cafe. He wanted to grab a bite to eat--none of it looked good, but I tried a 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. I saw Tony Mendez, PA, to Dr. Barrs. He didn't even recognize me.
I've 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 want to throw up every time I try to eat--and it mirrors how I felt going through chemo.
If I am honest, I would much rather be sitting in front of Dr. Northfelt and having him tell me...these exact words, "your cancer is back" At least with cancer, it was challenging to go through. Still, the VILLAIN did not win; I hate when people say, "she or he lost their battle to cancer," but 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. I feel this thing with the nerve in my face is not going away--I'm not sure how I can recover from this.
I feel like I have a heavy load. I can hardly breathe right now--my strength is gone, and I'm weak--I don't think I've ever felt this emptiness 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. Maybe their prayers will be heard. How many times do I need to do this? Eric said softly, "You are beautiful." 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, 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 and looked at the people sitting in the chairs surrounding that area and said to Eric, "I wonder if that guy knows an Angel got her wings today, 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 tough week; looking in the mirror, I am a different person--my face has partial facial paralysis, not bell palsy. I've been told it is permanent and that only 2% of people in the world have it for the same reasons I do. 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 and have them fixed, and the baldness was hard, but it never defined me--it grew back. No, this is much worse. How can I continue in this body looking like this? So many people will say, "but your alive," or like Dr. Barrs told 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.
