Monday, December 22nd, 2008

I begin my next round of chemotherapy today. I have healed quickly, and although I was expecting a longer break, Dr. Chugh wants to waste no time. The way this cycle will work is that I will have my treatment today, and keep the pump with me until Christmas Eve. I will need to be disconnected at home and I am devastated. I wanted to be able to celebrate my favorite holiday as normally as possible. Ryan and I decide not to decorate anything this year, but I miss my ornaments so much that he brings our tree over to my parents and sets it up in the formal living room. I love to look at it and remember how happy I usually am around the holidays.
I have not been eating well or drinking enough fluids since my surgery but I do not get any more ill until the day after Christmas. My parents bought one present this year for both Ryan and me: Guitar Hero World Tour. We are both excited to play it, and are terribly disappointed to learn that my brothers’ XBOX has broken yesterday. They have had it for a couple years with no problems so I am bitter about the whole thing.
Ryan and I devise a plan to return all the bottles and cans from my parents’ garage as well as turn our change in to the Coinstar machine. Ryan throws in a giftcard that we had been given and we end up only having to pay eight dollars for a brand new XBOX. Unfortunately, everywhere in the world is closed on Christmas Day, so we have to wait. The next morning Ryan goes out and purchases our first gaming system. Sadly, by this time I am feeling the full effects of chemotherapy, even worse than usual. I have been throwing up about every forty-five minutes. I lay in bed, too nauseas to lift my head, listening to Peter and Ryan rock out in the living room. After a few hours of this my mom comes home from work and insists that I go into ER to receive antiemetics intravenously, since I am unable to keep them down orally.


Thursday, November 27th, 2008

Today we celebrate Thanksgiving. I have been successful in my goal of being home for the holiday. I am unable to eat much, but I am happy to be out of the hospital. While I was there I couldn’t eat anything for over ten days, so it is taking me a while to get my appetite back to normal. In the hospital my legs began to swell again, as well as my left arm. When my occupational therapist came to do my wrappings to treat the edema, she said my legs may never go back to normal. Two days after I return home the swelling is completely gone. I feel it is a miracle.


Saturday, November 22, 2008

In less than a week I am able to transfer out of ICU. I have examined my incision and have asked Ryan to count the staples for me. He believes there are sixty four metal staples holding me together. I ask him to take a picture with his phone and text it to Sam. My scar is gigantic, and the doctors refer to it as a Mercedes, since it looks like that symbol without the circle surrounding it. The pain management team has suggested the use of non narcotic pain meds, such as Celebrex, which I believe is used for arthritis patients. They also want me to go to counseling to learn how to control my pain with my mind. I think that is bizarre. In the meantime I am on the Dilaudid PCS pump. I only press the button to administer the medicine when I am going to get up to walk.
Tonight I am unable to sleep. I have not gone to the bathroom yet, and the pain from the bloating and constipation is severe. I lay suffering in the dark until I can take it no more. I have learned all the things I must do to help the situation. I wake Ryan up and ask him to walk with me in the hallway. It is around three in the morning. The nurse sees us and comes over to help. I am hunched over, clutching at my stomach. I am out of my mind with pain. I beg the nurse to help me, do something, anything. She says there is nothing she can do. So I walk and pray to God for strength.


Wednesday, November 19th, 2008

Only one day after my surgery I ask to get up and get into a chair. I am able to do it, but it is a complicated process with the numerous places I have tubing coming out of my body. I am determined; I learned my lesson from my last prolonged hospital stay. The sooner you are up and about the better things go and the sooner you can leave. I make it to the chair and am resting when Dr. Hafez stops by to see me. He asks how I am and I tell him I am thirsty, so thirsty and they won’t even allow me to have ice chips yet. He reaches into his pocket and pulls out two packs of gum. He offers me mint or cinnamon. I take mint and chew it. I will never forget his kindness.
I am also determined to take as little pain medication as possible. Narcotics cause constipation, which for me makes everything I am going through much, much worse. I have a phobia of pain medication, I still remember too well all the unsuccessful enemas and laxatives I was forced to take during my first hospital stay. The problem is that without pain medication, I won’t feel well enough to rehabilitate. I meet with the pain management team time and time again, they are trying to come up with a solution.
As impossible as it is to sleep in the hospital, the ICU is even worse. I become irritable and lash out at my mother, trying to make her feel bad for the brief time she has not been by my side. Even though I am in pain and in a bad mood, I am healing much more quickly than the doctors anticipated.


Tuesday, November 18th, 2008

I wake up in enormous pain, with a ventilator down my throat. I am beyond freaked out. The only thing I can think about is wanting it removed immediately. I motion for a piece of paper and pen so I can communicate this to the nurses. I plead with them to take it out but they are waiting for someone to perform a lung capacity test and want to slowly ease me off the machine. It is a horrible, panic inducing feeling to not be able to tell if you are breathing.
In the meantime they are unable to give me enough pain medication due to my extremely low blood pressure. I try to explain that my baseline BP is very low, but it takes hours for this to be straightened out. My room in ICU is tiny and very crowded. There is only about two feet between the end of my bed and the computer the nurses are using. Every time they walk between the two they bump against the bed, jarring me badly. Indescribable pain shoots across my entire body. I become furious and scribble orders for them to stop doing this. One nurse reads my note and tells the other to stop, but they are careless and repeatedly continue to bump me. I tap the paper and clipboard where I have written my request, glaring at the two of them.
Eventually my ventilator is removed and it is an enormous relief. I am finally able to notice what else is going on with my body. I am not ready to look at my incision yet, but I realize that I have IVs in my wrist and neck and arm and chest, and oxygen in my nose. The epidural will be left in my back for days. In addition to all that they will place a PICC line in my upper arm.
A specialist comes into my room to perform some type of test on me. There are already several nurses in the small room, bustling around me. The specialist leaves something by my feet and exits the room. She remembers she has forgotten it and returns, looking all around. Everyone helps her, but no one notices but me. I weakly motion to the item and she finally sees it and leaves once again. My dad has been watching this in the hallway and tells me how astounded he is by my mental clarity in the state I am in.
I obviously know nothing about the surgery, but my family tells me it went amazingly well. I was very stable throughout; they were able to remove the entire tumor and left kidney and a large piece of my IVC. They decided to replace it with and artificial stint. The liver specialist saw that my gallbladder needed to be removed and took that out while he was in there. He joked that I got a “two for one.” My main surgeon, Dr. Hafez closed me up himself. The surgical team believes they were able to get clear margins. After my tumor is sent to pathology we are told that the cells were dead, killed by chemotherapy and the embolization. I will have more chemo when I heal, to make sure no deadly microscopic cancer cell is left anywhere is my body.
Although I have no memory of this I am told that no one informed my family when I was transferred to ICU. They say that I had been up there for three hours and was awake when they arrived. I am also told that I repeatedly tried to lift my gown to see my incision in front of my dad and Peter. I like to believe that is not true. The white, creamy looking drug they gave me nicknamed “milk of amnesia” helps me pretend it never happened.


Monday, November 17th, 2008

Surgery Day today. I wake up early and follow all the specific directions I have been issued. I have to shower with a special soap. As I scrub my stomach I realize I will never see it unblemished again. My friend Thelma, my grandparents, my parents and my brother Pete arrive in my room. I am nervous. I cry when I have to remove my wedding rings. I reluctantly hand them over to Ryan for safe keeping.
I am taken downstairs to pre-op. While I am in there I am only supposed to have one visitor by my bedside. We sneak in two people at a time and it is very difficult to tell them when to switch with the people in the waiting room. I want to see everyone, and I don’t want to hurt anyone’s feelings. Ryan’s mom arrives and comes in to wish me well. I sob when I have to say goodbye to Peter. I am not ready for my mom or Ryan to leave me. When they do the epidural I expect to be able to hold on to Ryan, like my friends have described from their labor stories. The anesthesiologists tell me no, that I have to do it alone, because of the risk of infection. I am terrified, but it is not as bad as I imagined.
The last thing that happens before I am wheeled in is that I realize I have forgotten to remove my underwear. I hand them over to the nurse, she stashes them under the gurney and I wonder if I will ever see them again.


Sunday, November 16th, 2008

Pastor Galen from Heart of the Shepherd comes to see me today. My mom has asked one of the pastors from St. Matthew to come and visit me, but they are only able to send the visitation pastor, a man who I do not know at all. Pastor Galen gives me communion, prays with my family and comforts my dad. He asks if I am ready for anything that may happen, and I tell him yes. The ladies from the church have made me a beautiful hospital gown. On the pocket is embroidered: Be strong and courageous, do not be afraid, for the Lord goes with you. It makes me feel brave.
I go for my last MRI. It is even longer than usual, and the technician has made me keep my arms raised above my head the entire time I am in the machine, instead of allowing me to switch positions part way through the scan. When I feel I can take it no longer and I am choking back sobs inside the cramped tunnel, trying not to let my chest move so the scan won’t have to be repeated another time, I am finally pulled out. The technician unhooks me and tells me that that he is sorry it has taken so long. He said that the viewing room was full of doctors, telling him what to do. I look at him questioningly and he says that my surgeon came down to make sure the scan was performed correctly. He claims he has never seen a surgeon come all the way down to radiology. In that moment I know that Dr. Hafez will take care of me.
I arrive back in my room to the sight of my family dressed in Team Angela tee-shirts. Sam texts me a picture of her, Josh, Jackson, and their cat Phoenix dressed up as well. We take pictures. Later that night I am surprised by a visit with my friend Krisitn and my friend Julie’s mom Joan. They have driven all the way from Grand Rapids in a snowstorm. I am happy to see them and to take my mind off what is to come.
Late in the evening the doctors come in to have me sign consent forms. It is creepy acknowledging that I may die and I remind myself that it is just a formality. I ask the doctor if they have received the results of my latest MRI. She tells me that they will not need to open my chest. The tumor has shrunk far enough away from my heart. I collapse against the bed in relief and Ryan calls everyone to tell them the good news.


Saturday, November 15th, 2008

Andrew stays with me tonight, because he has to go back to school and will miss the day of the operation. Beth and Jay are visiting and we are all talking. While we are chatting, I fiddle with my IV connections. After a few minutes, Jason says he thinks I am leaking something. We look down; the fluids have made a small puddle on the floor. Once all of the fluid has dripped out, the liquid turns red and I realize in horror that my blood is pouring out of the IV I accidentally disconnected. Everyone jumps up and pages the nurse, but the sheet and my gown are soaked before Andrew runs into the hallway to get help. From then on I pay more attention to what I am touching.
After my friends leave we try to get some sleep. At around three in the morning the nurse comes in and says she needs to move me. Andrew tells her absolutely not, that I need my rest. He buys us a few more hours of less interrupted sleep. I call him my hero.
They have made me repeat my MRI twice already, because they have not been taking images of the upper portion of my tumor, which is the most important part. My surgeon, Dr. Hafez, needs to see if the tumor has shrunk down in the IVC, away from my heart. If it has not the operation will be even more complicated, and they will need to saw open my ribcage and do open heart surgery. There is a team of cardiologists standing by. A third MRI is scheduled for tomorrow. I am furious that they have not been performed correctly, because MRIs are long and achingly uncomfortable, and they are costing me time with my family each time they make me repeat the test.


Friday, November14th, 2008

I am admitted to the hospital today, to be monitored and prepare for my surgery Monday. I have begged my mom to bargain with the doctors to allow me to come in Saturday, but they were firm. I wanted to have one more chance to do something fun before diving into this long and difficult process.
Lately, I have been lying awake at night wondering what will happen if I never come out from surgery. Morbid thoughts crowd into my mind when I am trying to sleep, even when I tell myself not to think of what may happen. I become more and more fearful. I want to be positive, and I trust God. But I need to ready my heart for the possibility of death. I consider that the worst that could happen is that I will go to heaven to be with Jesus, and suffer no more. The only thing that crushes me is the thought of leaving everyone I love behind. Ryan and I have had so little time together. I was never able to give him a child. I begin to worry about him, because while my parents and friends will miss me, everyone else has someone to cling to. But I am Ryan’s person and I would be gone.
I need to talk about what I am going through, to make it more normal, and to get me to a point to when I am able to accept that this is really happening. Some people are supportive; some do not want to hear it. But I do not want to leave things unsaid. I cry when I think that if I go now, I will not be present at my brothers’ weddings or get to meet their future children. I think about the fact that I would have been an awesome aunt to them.
I try to think of what I would want done with my treasured possessions, and I realize I don’t have too many things worth giving away. I decide that my mom gets my Pandora charms; Sam gets my Christmas decorations and Beth my collection of girly DVDs. Maybe my brothers or Sam and Beth should split my wedding rings. When I mention this to Ryan, he says he wants them. I tell him that his new wife won’t want my things around, and this becomes a running joke. My sister in law Angie says she wants to head up the committee to find Ryan a new wife, to make sure she is not the kind of girl I would have despised.
This weekend is uncomfortable and frustrating for me. I begin my stay in a regular hospital room, but I am quickly transferred when they close that floor of the hospital and move all the patients. I end up in a newly constructed part of the hospital, which will eventually be an intensive care unit. ICU rooms have a huge wall of windows to allow constant monitoring and a toilet right next to the bed instead of a regular bathroom. This one has been modified to allow some privacy; a curtain can be drawn over the windows and door. This poses a problem for me. I have a lot of visitors; many people want to see me before I go under the knife. First of all I am out of the room for MRIs that take hours and hours, and secondly the doctors want to clean out my system. When they open me up and move everything around they need an empty bowel to prevent infection. So, I am not allowed to eat. At all. And I am forced to drink laxatives.
Laxatives don’t allow you much warning before you need to use the bathroom. When you need to go, you need to go NOW. So during the middle of my visits I exclaim, ok, I need to use the toilet, and everyone scurries to the hallway. The curtain can only be closed from the inside, so I drag my IV pole to the wall of windows, try not to catch the curtain in the door then rush back to the toilet to do my business. When I am done I spray some air freshener and invite everyone back in, totally embarrassed.


Sunday, November 9th, 2008

Today is the baptism of Jackson William Mann. The fall is passing by, and along with lots of bad there is some good. Sam and her son Jackson came to see us on Halloween and stayed until the beginning of November. Jackson was born in August, when I was still so ill that I barely knew what was going on around me. I had only seen pictures of him on text messages, facebook, and email. This was the first chance I had to hug and kiss my godson. Sam is able to schedule his baptism at my church, St. Matthew in Walled Lake. Before she left Michigan Sam attended there for about ten years. My mom arranged for Pastor Paul to perform the ceremony, which meant a lot to us.
After the baptism, Beth is having her baby shower for her first born, Breslin Megan Scott. It is wonderful to have all three of us together again, and spending time with Jackson is a joy. He makes me truly happy for the first time in a long time. Sam made this trip now so that she could see me while I am on a break from chemo, so I would be healthy enough to go out and do things with the girls. She wanted to come closer to my surgery date, which has been scheduled for November 17th. After thinking about we decided it would be better this way. I have stopped chemo until a little while after my surgery, so that my body will be strong enough to sustain the intense operation and heal afterwards.


Friday September 19th, 2008

Today is Betsy’s wedding. It the first real outing I have had since becoming sick. I had to rearrange my chemo schedule, but my oncologist thought it would be good for me, and I was determined to go. My mom buys me a fancy, sparkly black scarf and I learn how to wrap it around my head and tie it.
I take my first picture without hair. Up until today, there was nothing I wanted to remember, and I hated the way I looked. I was afraid I wouldn’t make it, and then the people I loved would look back on the pictures from this time and remember me ill and bald. Now I wish I had taken more.
I am so grateful that I am able to go; already I have missed so much. I was hospitalized during my goddaughter Eve’s first birthday party and it broke my heart. The week I was diagnosed, Beth and I had planned a surprise trip to Seattle to visit Sam, I had been looking forward to that visit for months, and I was devastated when I had to cancel. Cancer takes so much away from a person, things you would never think of until you live it day to day.
The summer for me has been filled with doctor appointments, blood draws and chemo treatments. Dealing with the side effects has become my least favorite part. I have to take a Neulasta shot after each cycle. The next day my body aches from head to toe. When I vomit and Ryan tries to rub my back I yelp in pain.
At one point I am taking 28 pills a day, between pain medication and antiemetics. They all interact and the worst part for me is the havoc they wreak on my bowels. It has made me miserable, worrying about fiber intake and hard stool. I am paranoid about eating cheese or eggs. I marvel at the time when that system worked on its own, it is hard to remember what it was like. I get a hemorrhoid and for the first time I am angry and feel this all is unjust. I definitely did not plan on dealing with that particular problem at age twenty-six. Up until this point, I was not happy, but I was accepting. I trusted God, and I knew He had a plan for me, and that however this all ended, He would see me though it and it would be for the best. But pain in my butt is just unacceptable to me. I am ticked off. Whenever I complain, my mom asks if that was all that is wrong, wanting to make sure that nothing life threatening is bothering me. I scream that it is more than enough!
When everyone returns to school and work I need to adjust to staying home alone and caring for myself all day. I am very lonely, but I am able to start watching television again. I put on the Food Network, and it seems like I leave it on forever. I find it very comforting.
During the periods when my blood counts are low I am given lots of precautions. Wash my hands constantly; force anyone else around me to do the same. Whenever I actually have enough energy to venture out to the store during this time I must wear a mask. I look like a total freak. My least favorite part is the no fresh vegetables rule. I never realized how often I eat lettuce and tomato. Nothing tastes the same without them. I crave salads and chocolate covered strawberries.


Tuesday, August 5th, 2008

Today is an awful, discouraging day. I have had my third round of chemo, and I went to the hospital on Thursday night, due to uncontrollable vomiting. Ryan got scared when blood came up and took me in. They kept me until Sunday, but I end up going right back today. I go into St. Joe’s first because I have an abscess. They take one look at it and decide it was too large and they were too afraid of infection to drain it there. I get to ride in an ambulance for a second time, this time my mother goes with me. As we drive down Grand River past the preschool, I cry because they are hosting a spaghetti dinner for me tonight and I had gotten special permission from my doctor to attend. I wanted to thank all the families and staff for their support in person, but I end up hospitalized again instead. I am frustrated beyond belief.


Saturday, July 19th, 2008

Today is the Wash for the Cure, a carwash in my honor put on by my coworkers. I ask my parents to drive me up to the school so that I can say hi to everyone. When I get there I am able to greet only a few people before becoming too emotional and having to leave.

At home I have been uncomfortable and dealing with depression. I cannot fall asleep easily and when I do, I wake up after only a few short hours. I am unable to concentrate on anything that would provide some distraction. I try to read magazines or watch TV, but I end up just sitting in a chair staring off into space. I want to call my friends, but I don’t feel up to it. I try to get out of the house as much as I can, in ways that won’t overexert me. Each morning, one of my brothers will take me for a walk around the subdivision in my wheelchair. At first, I am embarrassed by the strange looks I get, but after a while I come to enjoy the fresh air and sunshine. In the evenings, my mom will take me for a car ride, sometimes to get a slurpee, which feels good on my throat, but often causes me to vomit. I drink it anyways. I am starting to get used to the constant puking.


Thursday, July 10, 2008

I go to the emergency room at St. Joe’s in Howell today. My port is oozing blood. They keep us waiting a long time, but in the end are not really able to assist us. They rebandage my port and send us home. We vow to make the drive to U of M every time we need help. In the end, we make a few more useless trips to St. Joe’s before truly learning our lesson. I have begun my second round of chemo. My kidney function is not wonderful, so they are keeping a close eye on me. My chemo consists of a very long day at the hospital. First the lab visit, seeing my oncologist in clinic, and then finally receiving hours of chemo and fluid. Some of the nurses there are brisk and rude but one medical assistant is always kind and cheerful. Her name is Debbie and she remembers me because she lives out in our area and read about me in the local paper. A stranger read the same article and mailed me one hundred dollars. Her son died of Ewing Sarcoma in his twenties and she is hoping that I fare better.

One bright spot of my treatment is that my mother’s cousin’s wife Diane works in the hospital, and has promised to come and visit us each time, allowing whoever has accompanied me the chance for a quick break. She makes good on her promise and never misses a chemo day, ending up spending hours with us each time. Sometimes she stays with us so long she has to work late or take work home with her.

Diane is not the only one reaching out to help us, in fact we have been overwhelmed with the outpouring of support we have received. In the hospital my walls were plastered with cards, letters, pictures from my students, and my shelf was filled with flowers and gifts. All these things were a visible reminder to keep trying my best. So many people were behind me. My bosses Jan and Julie at the preschool where I work organized fundraisers and the families and staff took up collections and prepared meals for us for months, allowing my family to concentrate on getting me well. My coworker Amanda hosted a charity dance recital for me, and my parents’ places of employment took up collections. All these gestures gave me strength and comfort, in a time when I was weak and afraid.


Friday, June 27th, 2008

I am finally allowed to leave U of M hospital. It has been decided that it will be impossible for me to make it up and down the stairs to my bedroom at my house. My family changes their dining room into a bedroom for me. My Grandpa and Uncle Doug help my dad put doors up, my brothers move furniture and my mom does everything she can to make it homey, comfortable, and free of germs. It is best for me to be there during the day because my brothers are home from school and can take care of me. This evening, Peter’s favorite hairstylist comes to our house and shaves our heads. Dad and Ryan decide to join in. She leaves a little bit on my head, but cuts it very short. I don’t cry, I am relieved it will finally stop falling out all over me. I take a picture to send to Sam.


Thursday, June 24th, 2008

Tuesday, June 24th, 2008
It is Ryan’s 26th birthday. We are spending it in the hospital, where his wife of a little more than two years is battling for her life. It doesn’t seem right. Grandma and Grandpa take me to the hospital gift shop to buy Ryan a card. We spent Father’s Day here, too. It is not a great place to celebrate. I was supposed to be sent home days ago, but my white blood cell count has been too low, and I started running a fever. I have been taking antibiotics, getting blood transfusions and trying to walk as much as possible. When I creep down the hallway with my walker I feel like a ninety year old woman.

My port placement surgery is tomorrow. I am disgusted by the idea of having something under my skin for years to come. It takes me a long time to even be able to touch my port without shivering. My oncologist, Dr. Chugh, says it will save me a lot of pain. Eventually I come to realize that whether or not it has saved me pain, it has saved me a tremendous amount of time. I have a double lumen Port-a-Cath, which means they don’t have to stop pumping me full of fluids to begin my chemotherapy. The fluids add hours on to a chemo session. My hair is falling out and my brother Peter and I have made a pact to shave our heads as soon as I get home.

One day a lady from the hospital brings wigs for me to try on. They are very low quality, to the point of ridiculousness. They look like synthetic Barbie doll hair. It is a pretty traumatic experience; I have to pick the one that looks “best” on me when I can’t even bear to look in a mirror. I make my mom choose. While it is still on my head and I am beginning to cry my least favorite resident of all time walks in my room. Dr. Kim. She is Asian and does not speak English very well. She sees the wig and giggles, asking “what are you doing, why you try on wig?” My mom looks as though she is about to smack her. We are on the oncology floor. It is the least appropriate question I have ever heard. We have had problems with Dr. Kim in the past as well. On day my nose was bleeding and she stupidly asked me if I had been picking it.


Sunday, June 15th, 2008

I have not eaten anything since June 3rd. I was put into a chair yesterday. I finished my first round of chemotherapy. I have been very nauseated. The doctors are trying to regulate my antiemetic drug schedule. The dietician has ordered me to drink one ounce of Carnation Instant Breakfast every hour. This seems like an impossible task.


Thursday, June 12th, 2008

I have not gotten out of bed. Physical therapy people are telling me to move, or I may never be able to again. Doctors are telling me if I move I may release a clot, sending it into my heart and lungs, killing myself. I am terrified of both options. My lungs are weak from being confined to a bed. I must do breathing exercises every hour.


Wednesday, June 11th, 2008

Tonight I begin chemotherapy. There is no time for counseling. No one warns me about the risks for my fertility, no procedure to save my eggs is scheduled. I am not allowed to go to the dentist’s one last time. The chemo is very strong, no one knows the correct levels for my body yet. No one teaches me about mouth washes, so I get the worst case of mucusitis anyone has ever seen. Eventually I literally cough up the lining of my esophagus. It is dark and I gag it out into the pink vomit basin. Ryan gets the nurse, who saves it in the bathroom and shows everyone. Residents come in all morning to look at it. I am confused and scared that it is something they will need to put back in. I am unable to eat for over a month. It burns my throat and chest to take even a sip of water.


Tuesday, June 10th, 2008

My life threatening surgery is scheduled for tomorrow. My mom has called Betsy, my close friend since the fourth grade, to tell her the news. She comes right away to see me, just in case. In the afternoon, the doctors receive the results of my biopsy. It is not large cell renal carcinoma as everyone has thought. It is Ewing’s Sarcoma, a very rare cancer most often found in young boys, in the bone. My odds of getting this cancer are astronomical. My dad wonders why I couldn’t have won the lottery instead. The doctors must decide whether to continue with the surgery, or postpone it until after I had received chemotherapy. At the very last minute, they decide to wait.


Monday, June 9th, 2008

My kidney is embolized. It is a procedure to kill the left kidney to stop the cancer from growing. I am placed on a freezing cold table in a very bright room. The medical staff leaves me alone and moves to a shadowy place outside of my sight. I am crying and begging for help. They shave me and enter my body though my groin area. It is a burning, searing pain. That is all I remember.


Friday, June 6th, 2008

I have a bone scan. To date, nothing in my life has been more painful or traumatic. The nurse who is “caring” for me is not a nice person. She does not trouble herself to administer enough pain medication to me. A lift team is called to transfer me from my hospital bed to the stretcher, as I am unable to move by myself. Not enough people report to my room, so the nurse is forced to help. She loudly complains about how fat I am, causing me to become even more ashamed and tearful. She states that she better receive workman’s compensation if she injures herself while moving me. By the time I reach radiology and am placed on the scanning table, I cannot breathe from the pain. I am shaking and sweating profusely, with tears leaking out my eyes and drenching my face. The technician sees the state I am in and makes a phone call, demanding that my nurse comes downstairs to administer enough morphine to allow me to lay still during the test. She does, but the thought of that day still makes tears come to my eyes and my stomach hurt. While I was still in the bone scan, my parents arrive on my floor and wait for me outside my room. They overhear a nurse complaining that she had to go all the way down to radiology to give her sissy patient more pain medication. When we arrive back upstairs, Ryan informs my parents about the nurse’s behavior. My mother becomes livid and informs the charge nurse that my nurse is no longer welcome to step foot in my room.

Later in the afternoon, my family meets with Dr. Hafez. He is the surgeon who will remove my tumor and kidney. He describes a difficult and dangerous procedure, a radical nephrectomy, involving stopping my heart. I have no memory of this meeting.


Thursday, June 5th, 2008

I don’t remember a lot of what happens next. It is all in bits and pieces, floating around in my head. I am on morphine. They try to administer my first blood transfusion to treat my severe anemia, but are unable to find a good vein. I have been poked over and over again. My biggest fear before cancer was needles. After going through cancer I can watch them draw my blood without flinching. My legs are wrapped in bandages to treat the edema and I am on blood thinners. A needle biopsy of my tumor is scheduled. The doctors inform my parents that I won’t remember a thing. They are very wrong. I was distraught during and after the procedure. We won’t receive the results for a couple days.


Wednesday, June 4th, 2008

I wake up in the guestroom upstairs, still in unbelievable pain. I look down at my legs and realize they are swollen beyond recognition. I am unable to walk. I have gained more than sixty pounds literally overnight. Later we learn that the tumor has blocked my blood flow and I have DVTs down both legs. My dad helps me downstairs, because Ryan has already had to leave for work. We will soon need all the money we can get. My parents take me to the emergency room at St. Joe’s in Howell. My blood pressure is extremely low, and I am rushed to the bed, two nurses strip me and hook me up to heart monitors. It is my first experience having strangers see me naked. A cancer patient has no privacy. Eventually, doctors examine places on my body I have never even seen with teams of residents bending over to watch. Eventually, it won’t even bother me. This time I am scared, incredibly embarrassed, and extremely overwhelmed.

I receive pain meds, IV fluids and tell my medical history for the first time. Before I get to sleep that night I will have told it more than twenty times. Even though I am in a great deal of pain, I am able to get the dates and details right over and over. My dad later tells me how impressed he was by that.

It is decided that I will still receive my scheduled MRI to see if the cancer had spread anywhere in my body. I don’t remember a lot of the process. I remember how badly it hurt to be positioned flat on my back, having a towel placed over my face, finishing the scan and then waiting for the results. Months later I run into the MRI technician at Heart of the Shepherd in Howell. She approaches me, tells me that she remembers me, that she was scared for me and has prayed for me for a long time.

We wait and wait, I am not used to how long everything takes in the hospital and I am stressed and impatient. Dr. Welsh comes in and says there is no evidence of metastasis. It is our first glimmer of hope! However, the tumor is huge and extends into my renal vein and inferior vena cava, the largest vein in the human body. I need to be transferred to a larger hospital. We choose U of M.

Dr. Welsh is concerned about the amount of time we will be kept waiting in the emergency room at U of M. She advises me to act like I am in even more distress than I am. She tells me to cry. It is our first hint about how to manipulate the system. We thank her for her advice. She says not to thank her, just come back and see her when I am healthy. Dr. Welsh tells us a story about a little girl who she had as a patient who came back to visit her on Halloween, in her costume. In the spring of 2009, I get my chance. Ryan’s grandma has suffered a mini-stroke, and we have gone into St. Joe’s to see her. Ryan spots Dr. Welsh in the hall and we go over to say hello.

At the time Dr. Welsh makes her request, my future is so uncertain that I make a vague promise to her and continue to worry about my first ambulance ride. Ryan arrives at the hospital just in time to board the ambulance with me, and we head over to Ann Arbor, where I will stay for a very long time. In the emergency room at U of M, we learn that U of M only likes to rely on scans from their hospital, and everything I have experienced is repeated. Eventually, I am admitted.


Friday, May 30th, 2008

The family takes off school and work to be together. We begin calling surgeons, to find out who is the best, trying to be seen as soon as possible. We also begin the heart wrenching process of telling all our friends, coworkers and family members “the news.” It seems unreal; everyone is shocked and says I am too young. Everyone wants to know what they can do to help. The only thing I ask for is to be put on prayer lists. My best friend Beth’s husband Jason starts a facebook group: “I Will Pray for Angie Emond.” We end up with almost 300 members. From then on my best friend Sam, who lives out of state, updates the page whenever my mom is unable to do so.

My mom calls her longtime urologist, asking for his recommendations. He pulls some strings for us, and we make some appointments. We talk to a surgeon from Beaumont, my mom’s urologist says the surgeon isn’t qualified. He suggests University of Michigan. We plan to stay the night at my parents’ house before my MRI.


Thursday, May 29th, 2008

Dr. Brayton is able to get me in for a CT scan. It is my first of many. I am in excruciating pain. Afterwards I try to go to the bathroom and scream out loud as I try to lower my body to sit on the toilet. Dr. Brayton again makes some calls and is able to get my results much sooner than I would have been able to, as I did not have a primary care physician. She calls my mother that evening with the news that everyone has been dreading.

It’s cancer.

I watch my family immediately fall to pieces, but I am numb. Somehow I feel like I knew this was coming. I sit in the chair, unable to move, unable to cry, as my family goes up to the urgent care to talk to Dr. Brayton and look over the write up of my CT scan. They believe it is large cell renal carcinoma, only treatable by surgery. An MRI is scheduled for Wednesday. My mom begins her quest for information regarding my cancer and treatment, starts a folder of all the results we are receiving. I gratefully allow her to take over. I just don’t want to know.


Wednesday, May 28th, 2008

I go into St. Joseph Mercy for my ultrasound. My best friend Beth takes the day off work to go with me. I have been experiencing increasingly bad back pain. The technician spends a lot of time with me. The longer she takes the more panicked I become. I have talked to Renee Brayton, a parent of two of my preschoolers and doctor at the original urgent care facility I went to. She has had me come in for blood and urine tests. She makes some calls and gets the results of my ultrasound that day. There is a very large mass on my left kidney. It is unclear if it is benign or malignant. Nobody is happy about this news, but we try to stay hopeful.


Friday, May 16th, 2008

For a few days now I have been feeling a bump on my left side when I lay down. My parents want me to get it checked out. After talking to them, I decide to go to Advanced Urgent Care in Howell. The doctor there feels the “palpable lump,” and takes x-rays. The medical assistant tells me that the results are unclear, and I can either go to the emergency room that night for an ultrasound, or try to schedule one. It is the busiest time of the school year for me with picnics, Mother’s Day Teas, last day of school, and PS graduation. I decide to schedule an ultrasound.