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.