So much has happened since I last updated the blog. As you probably know, chemotherapy kills the immune system. In early May I was given a high dose chemo regimen called H.A.M. It effectively put the aggressive leukemia in remission. One common side effect of H.A.M. is mucositus, and I had a bad case of it. The combination of no white blood cells, lots of moisture, and an already weak throat, created the perfect storm for a rare fungal infection. This infection burned a hole in my esophagus and trachea the size of a silver dollar. The hole was just above my vocal cords.
I knew I could not eat even though my doctors and nurses were encouraging me to do so. A tiny bit of pudding sent me into a coughing fit. One night I chewed ice and spit it into another cup. As I did this I pretended I was at the SLC farmers market chewing on ice from homemade lemonade. I must have drank/ate some ice in a half way sleep state. The next morning was a nightmare. I was sedated, but still slightly aware of what was happening around me... My awareness bounced back and forth b/w reality and nightmare. I could not tell which was which. I didn't know what was happening... If you told me I had been abducted by aliens and they were performing experiments on me, I would have believed you. Something simple, like getting a catheter and a breathing tube are a lot less traumatic, if your conscious and subconscious knows what is happening, or if you are completely out. Sunday night they discovered that my lungs were filled with 40% fluid. Monday was the nightmare day. I actually prayed that day that I would transition to life on the other side. I was so scared and miserable. When I finally was aware enough to communicate, I sat up and crossed my arms in front of my body to tell the nurse, "NO MORE!" She was a "polite" jerk about it. I wrote a message to them, "I have been poked and prodded all day. Enough. Stop. No more." They left me alone the rest of Monday. Tuesday they convinced me to agree to a scope. Under sedation the doctor investigated through my mouth, and discovered the hole. I remember the look on his face when I came to. They transferred me to the ICU in Murray that day... the big hospital.
a few days later my new doctor, Dr. Griffin, a thoracic surgeon, inserted two tubes in my belly. One goes to my intestines so that I can receive food and medicine. The other is larger and goes to my stomach. Dr. G wanted to give himself a way to get to my esophagus going from underneath.... in case he wouldn’t be able access the esophagus through my mouth. The night after that surgery I was in so much pain. I was still intubated, and my entire belly HURT, especially at the sites where the tubes were placed. As soon as anesthesia wore off enough for me to scribble, I wrote on a paper, "PAIN!!" My aunt was with me. She's great, but that night she aspired to a new level of greatness. She sat next to me all night. I coughed at one point and the pain in my stomach was beyond anything... and after I asked she knelt beside my bed and prayed that I wouldn't cough again... and because of her prayer, I knew I wouldn't... and I didn't. Seriously. That was a hard night for me, there was no sleep.
After that, I waited in the hospital, receiving food through the tube in my stomach, gaining weight and strength, so I could be strong enough for major surgery. My whole family came to Utah to be with me. They thought I was going to die... and honestly, I felt that I might. In fact I wanted to, because I was so miserable...I thought, other's have died after much less than this... so I searched my mind for a woman to replace me, and I realized my son and husband need me. So, I made the choice to stay.
My family, and over a hundred people fasted for me that week. We begged God for a healing miracle... whether it be through miraculous healing, or skilled surgeons, and many small miracles along the way. My Grandpa Ellis had a similar experience 20-30 years ago. Long story short, he was hospitalized with a hole in his esophagus. All of his children traveled to Texas, fasted and gave him a priesthood blessing. The next day when he went in for surgery, the hole was gone. He was healed. He promised at that time to serve with all he had to give. I wanted a repeat of my Grandpa's miracle, so I have made that promise too. At first I thought it would be great to join my aunts and grandmother on the other side... that I would be an angle in constant service... then I realized I can do that work on this side. Im not sure how to achieve this sort of amazingness, but I have a few good examples.
The hole in my esophagus and trachea was so large that my two really amazing surgeons performed a "muscle flap surgery". They lifted my left breast and extracted muscle tissue from my pectoral muscle. That muscle remains attached, and it was folded and stuffed into my neck. The muscle was then wrapped around my trachea covering the large hole. They also placed a large tube from my nose to my stomach. They anticipated that scar tissue would form around the tube to fill in the gaps on the esophagus side. I was in the operating room for about eight hours.
After the big surgery, I was in rough shape. I was sedated, and Nate stayed with me. He thought he was watching me die that night. My body was septic from the fungal infection. My doctor told me today (2 months later) that cutting that fungal infection out of my throat opened pandoras box and shocked my entire body with the infection. He said that when people are septic like that, they can only give fluids and wait. Today he told me that I have proven myself a survivor.
My surgeons told Nate after the surgery that it could go either way... As I came out of sedation, Nate and I were talking for about an hour. The first and only thing my conscious remembers from that conversation was Nate telling me if I wanted to choose to die, that he would be ok. He was watching me suffer a lot... but that statement totally confused me... because I didn't remember the whole conversation we had already had. Why did Nate tell me it was ok if I died? He left and I kept asking my dad if the surgery worked. I had no idea that my body was so sick... I thought that if I didn't die in the operating room that I made it. Well... a day or so later my fever broke and the rest of my vitals normalized as well. They un-intubated me, and I started getting out of bed, with lots of assistance, to use the toilet.
Then... I waited. Healed and waited. I remember my dad saying, "Why can't it be me?" It is so hard for me to watch the people I love suffer when I am sick. Back then there was little relief... aside from the foot rubs friends and family gave me every day. No matter how many pillows I had, I still couldn't sleep well at night. I hated night, because it was long... I often just waited for sunrise.
Nate was so so so sad. He spent most of his time making sure our little guy was ok. Im glad he had family close by to help him through some of the hardest times. This week little N admitted that he prayed every night that I would not die. My little 5 year old shouldn't have to worry if his mama will ever come home again. I am so grateful I get to walk him to his first day of kindergarten next week.
There is more to this story that I will write about in the future... This is an attempt to get this stuff down before I forget it all. I have already forgotten so much. Seriously... so much of May, June and July are a big haze. What I went through was a big deal. Today Dr. Diaz told me that what I went through, the complications, are about as bad as it gets. Its validating, and nice to think that the rest of this should be easy since I've already survived the hard stuff.
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