Curly Toed Shoes June 12th 2013

I'm sitting in a waiting room again. He has to get a PET Scan to see if there are tumors anywhere else in his body. Last week’s CT of his abdomen showed a spot on his kidney. Monday will mean an Ultrasound to get a closer look. I thought the first time I would be in a waiting room for an ultrasound would be with Elissa, waiting on the news of a grandchild.

The diagnosis has been changed from Stage IV Sarcoma to a Desmoid Fibromitosis Tumor.  His samples and scans were sent to Mayo Clinic, because of the size of the tumor and his age. It was Mayo Clinic that made the final diagnosis of a Desmoid. What in the hell is a Desmoid? Well, it’s rare, very rare. I don't blame the doctors in Saginaw for not knowing, for calling it Stage IV Sarcoma. Desmoids happen to four people in a million. Some websites call it Cancer, others say it is not. It is an aggressive tumor, often called the Angry Tumor. While not malignant on a cellular level, like Cancer, these tumors are very invasive and can cause death. This is better news. It is not Stage IV Sarcoma but this is hardly good news. Our life with ‘The Monster’ has just begun.

We are in a makeshift office, a trailer, outside one of Covenant’s Clinics. Nate says it before I do that it feels like he is there getting some illegal treatment instead of a scheduled PET Scan. They take him away, telling me it will be at least an hour. There is nothing but senior citizens in the waiting room. Nate is only 20. We shouldn't be here.

I became fascinated by an older couple speaking Greek. Speaking in English, he tries to explain to her what she is reading. Another older couple comes in. The wife tells a woman, a total stranger, that he has Stage IV liver Cancer. Two other women start talking about where they are at with their cancers. They go on and on about friends who have passed, who has it now….I cannot stomach their conversations. He is only 20.  I put my earbuds in, trying to escape their talk but my brain won't let me.

I text my friend, Kris, for a while, I start thinking about friends who have lost children, young children, to horrid obscure illnesses. I don't know if I can be like them, holding fund raisers for awareness, printing off Team Nathan t-shirts. I don't know what my role is here. I get up to use the bathroom and I see Nathan in another room. He has to wait for the dye to work into his system. I am so proud of how he is talking to the technicians. He speaks clearly, like an adult, and asks all the right questions. Back at my seat, I think about how he has grown.

He used to get so nervous and excited to do things with his friends that he threw up, even in high school. Nervousness runs on his dad’s side of the family. I used to push him, maybe harder than I should have, about being stronger. I would tell him that he could outsmart those butterflies and push through it. Not being a nervous person myself, I really couldn't understand his behavior. I didn't mock him but kept telling him how strong he really was.

I couldn't help but think back to my father’s funeral. I was abnormally high-strung and understandably upset hat day. Normally the tough as nails one in the family, I was shaking.  My eyes darted about the room. I really couldn't settle myself down. I had spent the day before at the funeral home for the visitation. I didn't do well there either. I wasn't being a grown up. I was being a little girl who lost her dad. I spent a lot of time sitting on the steps on the back porch of the funeral home.

I wasn't doing the grown up thing. Hours of telling people thank you for coming and making idle small talk was tiring to say the least. The funeral was being held at the church of my childhood. Standing in the back I could remember all the times I sat by my dad singing hymns. I can remember lighting candles with him on Christmas Eve and I remember him walking me down this very aisle. I’m not ready for this day.

The pastor comes over and tells us it’s time. It’s time to say goodbye so they can close the casket and start the funeral. My knees buckle and it starts. I’m not ready and start crying. My friend Cheryle, bless her soul, was watching me like a hawk. Before she can reach me, Nathan has his arms around me. Suddenly I am the child and he is the adult. 

I'm sobbing by now, uncontrollably. I can not stop. I'm sobbing as I hug my sister saying I don't want to say goodbye, not yet. I'm sobbing when I go to his casket and touch him for the last time. I'm sobbing while they are leading the prayer in the hallway, before we take the walk to the front of the church. I’m trying to compose myself during the prayer. I have my eyes opened but my head down. Nate is by my side with his arm around me. I look at his shoes. Good Lord, he wore his ratty old leather shoes and they were dirty. I look up at him, he gives me such a tender look and I say through sobs, “Your…shoes…are..dirty.” He looks at me, shocked, and whispers, “Really Mom, really, you want to go there with my shoes, now?” 

I'm leaning on him as we walk down the very aisle that I walked down with my father on my wedding day to Nate’s dad. I'm holding onto Nate this time. He leaves me to help bring the casket in. He’s so tall. He’s the largest of all the grandson’s. My Dad was a big man too. I feel a touch of pride knowing Nate is so big. Throughout the service, Nate was on my left side, Elissa on my right. I kept sobbing. I could NOT stop the tears. A couple of times I looked up at Nate and he patted my head. He was being my rock, my shoulder. Not my oldest child, not my daughter, my baby, my baby was there for me.

My boy grew that day. He was called upon and he didn't cower. He knew I needed him and he did what had to be done.

They bring Nate back to the waiting room. He is talking to the technician and they are joking about how tall Nate is. Because Nate is 6’4”, they had to do his PET scan with his feet sticking out, and then later with just his feet sticking in. I’m seated, listening to all of this. While Nate is asking questions about when the results will be to his doctor, I notice the technician’s shoes. They seem to be curled at the end? I stifle a giggle, grab my phone, mumble something to Nate about texting his dad but I secretly snap a photo of the guy’s shoes. In the car later I show them to Nate. He looks at me and says, “You notice people’s shoes at the weirdest times.” 

Purple Flowers June 10, 2013

There are moments in your life, defining moments that you remember where you were, what you were wearing, what you ate; odd details that have nothing really to do with the impact of the moment. 

You remember that on your way there, a car, a blue car, cut you off. You remember the flowers blooming outside the doctor’s office, unusual purple flowers that look a bit too much like onions. You think, “What an odd choice for an ornamental flower?” They aren’t very attractive. You keep thinking about those strange flowers as you sit in the doctor’s office, waiting. You have done your research. You only researched benign tumors. You have a few theories but you wait for the experts to explain it all. You listen to the too young doctor in the too large suit rambling. You can tell he is nervous. That makes you nervous, so you think about the odd purple flowers.

Stage IV Sarcoma. He’s only 20. Yes, the tumor on the CT Scan last week seemed very large but he only started having pain a month or so ago. Stage IV, how can this be? The too young doctor in the too large suit starts talking about treatment plans, U of M, and the dimensions of the tumor. You look at him, your boy. You can tell he has NO clue what a Stage IV diagnosis means. You look at your ex-husband; it hasn’t registered with him yet either. You keep swallowing, trying hard not to make a scene. You want to scream, cry, to vomit but you keep it together because you KNOW what Stage IV means. You see that the too young doctor in the too large suit realizes that you know. He starts looking directly at you, speaking directly to you. You don’t know what to ask? How long has it been there? Well, that is hard to say. What caused this? We really don’t know. You look at your boy again. You remember the first time you saw him. Your skin starts to crawl. You don’t know how much longer you can stay composed. The buzzing in your ears grows louder. The walls start moving. The too young doctor in the too large suit is watching you. He leaves the room to get you some information he’s printed off. You try to think about those damn purple flowers.

And there you are, making plans at the front desk for an appointment at U of M Sarcoma Clinic. He needs more blood work. He needs all his records. You agree to take him for his blood work but you say you have to do something first, that you will pick him up in a few minutes. Driving across town, you keep thinking of the purple flowers because if you think of Stage IV Sarcoma you are not going to be able to move. People are waiting for the news. You call your sister. You have to say the words out loud. You start to unravel. You manage to post the information and a prayer request before your hands start shaking uncontrollably. You are undone. You let it happen. It pours out of you. You try to breathe. You know you have to compose yourself. He needs you to be strong. Dear God, how can I be strong? My baby boy has Stage IV Sarcoma. He’s only 20. 

Beautiful, Beautiful, Beautiful Boy May 23, 2013

“Don’t freak mom.” Those words do more to send a mother’s blood pressure to the roof than any other. “I finally went to a doctor about that pain in my side.”

Nate had told me about his side just a few weeks earlier. It hurt enough to keep him up at night and compared to his left side, it did seem swollen. Having a nephew who had Lymphoma at 16, I had insisted he get that looked at.

“They did a Chest X-Ray and there is a mass of unknown origin and I have a CT Biopsy scheduled for Monday, can you take me?”

A mass of unknown origin, a MASS, how can he have a mass? Maybe it’s a pulled muscle? Maybe it’s an inflamed fatty tissue? A CT Biopsy? He’s only 20 years old.

Monday morning we arrive an evidently we are late. He said it was an 11:00 am appointment. They girl explains that he was supposed to be there at 9:00 am for prep. We assume we are going to have to reschedule, but they don’t. She says, ‘no problem.’ No problem, being late for a scheduled appointment at a doctor’s office? She calls to the back and says a number that must reference Nate. She looks up and says, “We will get you right in.” Right in? What is happening here? This is NOT how the medical world works. You are late, you have to wait. We barely sit down and they call us back. The waiting room is packed. I am somewhat confused at the star treatment. I note to myself, Nate is getting the red carpet treatment here, why?

They make him put on a hospital gown. He’s so tall his feet hang off the end of the bed. I don’t want to scare him but I remember how painful my lung biopsy was so I tell him to be sure to tell the technician that it hurts, not to suck it up like I did if he feels any pain. They come and take some blood work. There is some blood on the bed. His blood. I try not to think about my son in a hospital gown, with an IV, lying in a hospital bed, about to get a CT Needle Biopsy on a mass of unknown origin. I joke about his feet hanging off the bed. He isn’t even scared. At 20 years old he’s 10 foot tall and bullet proof. They take him back and direct me to another waiting room.

I have a book in my hand, one of my favorite authors. I realize that I have read the same paragraph three times and still have no idea what it says. Reading is not going to work. I stare at the huge fish tank that is directly across from where I am sitting. A small child comes up with her father and they look at the fish.

In the movies, when parents deal with terminal illnesses in their children, it’s all so very dramatic. They scream, “No, take me instead!” I start making my pact with God. I can’t scream. It’s a quiet breath that is barely a whisper that says, Oh God, please, just take me instead.”

My sister told me to write down Nate’s entire medical history to take to U of M. I frantically get out my blue notebook and just start randomly noting doctor’s visits, ER visits, asthma, tubes in his ears and my pregnancy for him.

Nate wasn’t planned. Elissa was only six months old when I got pregnant for Nate. I knew his dad wasn’t going to be happy about having another one so soon. I’m not really sure I am ready for another one either. Its Christmas time and I have morning sickness but I haven’t told anyone yet that I’m pregnant.  Good grief, I’m still nursing Elissa. At my parent’s house, I feel sick, crampy. I start to spot. I know what’s happening. I have been through this before. I fight the urge to push and keep saying, no, God no, please not again, please. I keep begging and finally say the words, I want him. I immediately calm down and I hear a still small voice say, “Even if he’s special?” I say yes, out loud and repeat, “Yes, I want him, even if he’s special.” The pains stop. I tell no one about this. It’s February before I even tell his dad that I am pregnant. I spend the entire pregnancy wondering what ‘even if he’s special’ means.

Nate was a planned C-section. I argued with the doctors that they had the date wrong; they were going to take him too early. I knew when he was conceived.  They told me they would only change the date if I had an amino. No way was I having one of those. So August 27^th, early in the morning, Nathan Thomas Bracher was born weighing 9lbs, 3oz and 23 inches. He was covered in vernix. He looked like he had been dipped in pancake batter! I kissed his face anyway. He had the blackest eyes I had ever seen. When he shifted them to look at you, he looked like a shark in a tank. We call him Shark Boy. He had a problem with his bilirubin levels so he was hooked up to a wallaby. He looked like a glowbug! I asked for him to be removed from my room at night because I couldn’t sleep next to this nuclear glowing baby! We call him Pumpkin Boy for his lovely orange/yellow glow.

When Nate was just over a year old, he got pneumonia, bad. He was on antibiotics for a double ear infection but I knew something was wrong. He was shaking and it appeared like he was talking in his sleep. His temperature was 106. I called the doctor’s office and told them I am coming over. When we got there I said his name and said, “Which room?” I wasn’t going to sit in a waiting room, not with a 106 temp. The doctor came right in. He started saying something to me about Nate’s temp, assuming that I was an exaggerating mom. Before he can finish the girl taking Nate’s temp says, “Doctor.” This was before ibuprofen was over the counter. The acetaminophen I had been giving him brought him no relief. One dose of ibuprofen and he wasn’t shaking anymore and peacefully sleeping, even snoring like a man. After the blood test it is confirmed pneumonia. I was given the option to put him in the hospital or treat him at home. We go home.

When he is three we spent a fourth of July in the ER. By spent I mean we are in there at 3:00pm and are not seen until 11:00pm. This was the summer Nate talked me into letting his grandpa shave his head. While we are outside and I am petting his head when I find a bump. I look, oh God there is a ladybug sized brown bug, biting him. I try to flick it off. It won't budge. I try to pull it. It won't budge. So off to ER. Nate was such a trouper that day. We only had a handful of toys but he was great. This is the time period he is called Nater Tornader. He’s usually a bit of an energetic kid. Finally when it’s nearing 11:00pm I go to the girl at the desk and say, “I know you have been busy. I know that drunks who fall off their boats and cut their feet on the boat propeller do take precedence over a child with a bug in his head but really? We have been here since three. It will probably take a minute for SOMEONE to take some tweezers and snatch out this bug.” It works, we are in a room! It does only take a minute to remove the STILL very much alive bug that has been sucking on my child’s head all 4^th of July night. They assure me it’s not a tick but a chigger so I'm told NOT to worry about Lyme disease but they give us some antibiotics just in case. We call him Chigger Boy for years.

There are many MANY doctors’ visits for ear infections that eventually lead to getting tubes in his ears. It took five nurses and myself to hold him still to get the IV in him before the surgery. I was holding his head, trying to keep him calm. I tell him it will only hurt for a little bit. He screams, “You lied. YOU LIED! It hurts, it STILL hurts.” One of the nurses starts to giggle. It took an abnormally long time for us to be able to see him after recovery. We finally question what is taking so long when out pops a gurney, Nate sitting up and five nurses around him laughing. One apologizes and says, “Oh, I'm sorry, we had to keep him a bit longer because he was TOO much fun.“

He is hospitalized at four with dehydration from a Roti Virus infection. This time he was way too weak to fight the insertion of the IV.

Shortly after he is diagnosed with asthma and has to start taking medications to treat his allergies. Try having a three year old on liquid albuterol!!! Bouncing off the walls does not BEGIN to describe the effects of that drug. He’s Nater Tornader again.

With each illness or medical event in his life, I wonder about the still small voice asking me, “even if he’s special?”

He breaks out in Chickenpox the night after our church Christmas program. I had to call everyone he possibly exposed to Chickenpox, including our pastor. The pastor had played the part of Jesus and was sitting among the children during the play. Unrehearsed, during the closing song, he picked up Nathan. Nathan curled up against his chest and made the whole congregation melt. Who wouldn't want to curl up in Jesus’ arms when you have a 104 temp?

Once we moved out into the country, the rest of his childhood was uneventful, health wise. He stopped taking his medications for allergies and asthma in junior high and frankly was rarely sick. Sitting there waiting for him to come back to his room after his biopsy, I really couldn't remember his last doctors visit.

The nurse comes out and says, “Can you follow me? The radiologist would like to speak with you a moment.”

The radiologist starts explaining that they were having difficulty taking a sample. He shows me a screen that displays the image of my son’s body and his mass of unknown origin. The radiologist points to these little broken white marks. “Those are his ribs. They are being destroyed from the pressure of the mass. That is what is causing him the pain.” He shows me that the mass of unknown origin is growing into the muscles on his right side; the other half of it is ‘infiltrating’ his rib cage. He repeats this same information several times. I look at him. I see in his eyes he wants to tell me more. I tell him about the nephew with lymphoma and ask him what he thinks this mass is. He quietly says, I don't think it’s lymphoma but let’s wait until the labs come back on the tissue samples before making any decisions.”

It’s echoing in the back of my head but I can still hear it.

 “Even if he’s special?”

Yes, I say again, EVEN if he’s special.

Before you cross the street,

Take my hand,

Life is just what happens to you,

While you're busy making other plans

https://www.youtube.com/watch?v=XO2v7qZClbw