Sunday, September 30, 2012
"To feel the love of people whom we love is a fire that feeds our life. But to feel the affection that comes from those whom we do not know, from those unknown to us, who are watching over our sleep and solitude, over our dangers and our weaknesses — that is something still greater and more beautiful because it widens out the boundaries of our being, and unites all living things." Pablo Neruda, Childhood and Poetry
I am trying to piece together some kind of update since my post several weeks ago. It seems like so much time has passed and way too much stuff. I am truly not feeling well or healing from my surgeries like I had hoped, I have needed to been quiet and still. I have been in a dark place. I know I've taken you there before, but I have wearied of living and telling this story of suffering and feel you must be exhausted from it too.
Through miraculous God given strength and the wonders of modern chemistry I was determined to attend The Canton Chapter of the Foundation for Community Betterment's fifth annual Rocktoberfest celebration last night with my greatest supporter of all, my Dan. I've written many times before about this amazing organization and very special group of people. THIS VIDEO (click to link) was created by Len Cooper. He came to our home and patiently interviewed me for over an hour about our story, and, although much of my rambling needed to be edited, including how important faith has been in this journey, it is a beautiful gift to hear in my own voice how much God has loved us through so many of you.
Tonight I just want to say "thank you." Dan and I were both overwhelmed by the support last night. We felt alive for a few hours. We felt like we might be able to keep moving. We felt widened and united by your great and beautiful love. Our hope remains!
(Thank you to Christina Adam of Grace Designs Photography who gets credit for all the "good" photos included in the video. She will ever be our life photographer and friend. Also, please forgive my brain fog moment when I say the cerebellum is at the base of the spinal cord instead of the brain. Educating about Chiari and EDS will always be a life mission, and I want to make sure the facts are straight!)
Posted by Monica Kaye at 7:55 PM
Friday, September 21, 2012
Sometimes your body and mind and spirit are pushed so far past your limits you feel you will break. You actually want to break. You want any kind of release from the insane pressure that for some reason refuses to crush you no matter how hard you beg. This tension is perhaps one of the most unbearable kinds of hurt possible.
A week ago I was in this kind of pain. I was not recovering well from the surgery I had 11 days before to remove an abdominal mass. I guess I really knew something was wrong right away. When I shared the gruesome picture of my bruising here on the blog it was a cry for help. The crazy thing is "normal" recovery Monica would have been sneaking out of bed to clean something or organize something. I would decide I was well enough because I had to be. This Monica could barely make it to the bathroom and back. I could not lay down in Danica's bed to tuck her in without yelling out loud when I moved. I spilled a drink behind my nightstand and would not or could not do a thing about it. If you know me at all you know this is bad. Maybe the worst I've ever been. I stopped caring. My pain had maybe for the first time in my life completely ruled out my OCD.
In desperation I called my general practitioner on Friday to see if just maybe I had a bladder infection making things worse. My surgeon is out of the office on Friday, and I had an appointment scheduled for the coming Monday. My dear doctor who has walked through so much with me for so long and has championed me on days when I could not fight for my own health reminded me the reasons why could not really trust this self diagnosis, especially after a big surgery. Still, I refused to call anyone to come and drive me to the doctor to test my urine and have her take a peek at my belly. Delaney was having a friend over. I was trying to pull myself together so I wouldn't embarrass her. The truth is I was barely upright, but all the same things kept going through my head. "You're making everyone's life so difficult. Dan can't take off any more unpaid days. Your parents are exhausted. Danica is so tired and emotional. Delaney deserves to finally have someone over without the attention being on her sick mom or sister. They'll just send you to the ER and find nothing. You need to just stay down and let this heal. You are a waste. This is a waste . . . God, make it go away. Make this stop. Please, just crush me."
My dad got home at four o'clock. I was crying. I had to go. We took Danica with us and she fell asleep on the way. My mom took Delaney and her friend out to eat. I tried to call Dan. When my doctor saw me she knew. This was not "Monica, I live at a five every day on a pain scale of one to ten." I was in agony. The thing sticking out of my belly was really hard, warm to the touch and so painful I wanted to die. (No, I don't need to be on a watch list. It's okay to say that out loud when it's true.) She called Dr. Romero. They coordinated my hospital admission. Dear Dr. Romero left his birthday celebration with his family to drive down to Mercy on a rainy Friday night and pour over my CT with the radiologist. It wasn't good. I had a very large "thing" between the skin and the fascia. This was completely different than the mass seen in the ER two weeks before he removed during surgery. He told us it could be infection or a hematoma or something else entirely but we would try to aspirate it on Saturday morning. Dan left to come home to our girls and try to rest. I was alone in the hospital room with a dilaudid pump and all the terrors of so many nights alone while I was pregnant with Danica. My arms were both covered in tracks from the IV tries. Ten times in two weeks they had poked me for three successful IVs. The one they finally got was a 22mm in a vein on my thumb bone. This will probably not mean much to most of you. It shouldn't. But if it does then you know enduring just this is enough to ask of someone.
Morning came. Dan was back. Dr. Romero was back and the morning radiologist had reviewed my scan from the night before. He did not believe an aspiration was advisable due to the size. They needed to do surgery. Dr. Romero had the operating room reserved for around noon. When they took me down I started to freak out. On a "normal" surgery day the lights are all on, there are nurses and anesthesia bustling around and every bay is full. Dan and I were taken into a mostly dark and completely empty surgery waiting area. There was NO ONE. The anesthesiologist came out, and I went through my history AGAIN. I'm not an easy patient. Yes, I've had problems with anesthesia. My body chews through medicine. I usually have a PIC line. I am almost impossible to intubate. It's mind numbing and utterly exhausting to give this information over and over again. I know Dan can barely stand to be there. It's like reliving a nightmare. It's like having post traumatic stress disorder. You know no matter how hard you pray you will be back here again. You will float above yourself and hear yourself saying the words. You will almost believe this is just a bad dream. And when you think you will choke on the sound of your own voice they offer you something to calm you down. Have you ever had this before? It's called . . . You want to scream at them but you don't. You make a joke and tell them the exact chemical makeup of the drug they just offered you. Dan grits his teeth and holds my hand for a minute. He always says, "I love you Monki." And they roll me away.
All operating rooms mostly look and feel and sound the same. They are freezing. They always move you over in an awkward way to the actual table. Everyone looks the same in their blue caps and masks. Depending on the surgery they will start rubbing cold red liquid all over you and then you start to feel completely exposed and at the mercy of these people standing around you. God, please make them put the gas mask on. And then they do and in a second you're oblivious until you're in recovery and hurting really badly (and if you wear glasses like me, can't see a thing) and you know the hard part is just beginning. Operating is easy. Healing is not.
I am a woman who has had six, yes, SIX, major surgeries in the past two years and more than I can really count all together. That's an average of one surgery every four months for the last twenty four months. Add in Dan's kidney fiascos and Danica's crazy major surgery and year long recovery and you're right to say our family has been asked to endure too much. It is. It's mind blowingly too much. It is more than "Everybody has their stuff." And "You guys just can't catch a break." It's more than a car wreck people want to rubberneck to see. It's way too long and too far reaching to be a disaster or a tragedy. I don't really know what to call it except "Our Story."
Tuesday I saw Dr. Romero and was finally prescribed a nasal pain reliever that works. I can only take it for five days. I have had a clearer mind since being off narcotics. I have been incredibly blessed by all of you who refuse to walk away from this mess. I have had care packages and cards and visits with gifts and our family has had meals. Without this love I might not have made it. Our family would not have made it. You continue to faithfully bless us in big and small ways. Thank you.
Many of you have asked about the trip planned for last Friday to Cincinnati to see the pectus surgeon. The trip was cancelled. Through all this drama and two unexpected surgeries we have decided I will see a second opinion surgeon at Cleveland Clinic in late October. This is when we thought I would actually have surgery. My body cannot endure such a painful and drastic operation without first fully recovering from these. I continue to have chest pain with exertion and other marked symptoms. In my mind I think perhaps by late December I could maybe be ready. The closing on our house is pushed, and it may be early November before we are even moved. My girls are showing signs of really needing their mama. My husband wants and needs me. I need myself. My brother and sisters need my parents back. Their other grandkids need them. We need to not need them.
Tonight we are past our limits. Dan hurt his back. I stepped up and did more than I am even close to being able to do. The left side of my abdomen is hurting and hard and swollen. Just because I am stitched on the outside I know I am gaping on the inside. I'm not feeling strong or brave or hopeful. Could my faith be all wrong? Maybe this really is all TOO MUCH.
Or maybe it is exactly ENOUGH. Our Story. Our days written when as yet there were none of them. Our strength for this day. Stretching. Growing. Strengthening. Grace in measure for every single breath. New limits.
Push. Help us God to push. Remind us why it matters.
Posted by Monica Kaye at 9:56 PM
Monday, September 10, 2012
We take nothing for granted here. There are day in and day out things you might never think of hoping for or praying about or celebrating that we have been holding our breath so long for, just waiting to see any movement towards our goal. Since Danica's second brain decompression and fusion in October, 2010, she has had bladder and bowel issues. On our most recent trip to Cincinnati Danica saw a special urologist and was also referred to a colorectal doctor. We were told some of her issues were physiological and some were most likely due to neurological damage as well as the period of development she was in during the trauma. We had overcome the urological issues with some help from the appointment, but the poop was just not happening. Oh how this mama's heart prayed. In the perfect storm of my newest pain and surgery and Danica heading back to school last week for full days I made my pleas for God to help us with this milestone top priority. He answered. Danica has pooped in the potty eight days in a row. This is huge!
The bad news is I have not pooped for eight days. I am in so much pain, and we are back to depending on God for even the most basic functions of life. I am barely able to move around. I cannot explain how hard this recovery has been. Today I became very disheartened. Our planned trip to Cincinnati this coming Friday and Saturday seems ridiculous. There is no way I can do this. I cannot keep doing this. My body and spirit have hit a brick wall. My Laney's birthday is Wednesday. I need to go out. I need to get a snack for her class and a birthday card and a few surprises. I need to go to book club tomorrow night. Would you believe I haven't been since January of this year? I need to talk to friends about anything except this one note song. I need to find some excitement about the house and moving and decorating. I need to be able to walk just a block in the cool fall air and breathe. But first, I need to poop. Everyone poops eventually . . . right?
Posted by Monica Kaye at 7:32 PM
Saturday, September 8, 2012
I can't show it all to you, but this is a glimpse of what my slashed and bruised body looks like tonight. I've been cut many times and in so many places in my thirty-six years. My excision of abdominal mass on Tuesday morning was the worst yet. The pain has been frightening. The swelling like nothing I have ever seen. I have never so consistently taken pain medication and stayed this still after a surgery.
Strangely, I have not been lonely. I have not felt frantic. I have barely wept. I have had a beautifully orchestrated parade of care packages and cards delivered that have ministered in the exact quiet way I've needed to encourage my heart. I have much to share with you all when my strength returns, but tonight I need to say, "Thank you." Your prayers are effectual. Your love is making such a difference here. It is the best recovery yet.
Our hope remains.
Posted by Monica Kaye at 7:21 PM