My Adenoid Cystic Carcinoma Journal
October 18, 2004 - Doctor Visit
I took Krysti to the doctor to get to the bottom of the sore throat and fever; the test came back as strep throat. This is the last thing we needed before the surgery. They gave her a shot of antibiotics and gave her something to help her sleep. It seems that we’ve been up all night for the past couple of days; hopefully she can get some rest tonight and tomorrow night. She already feels much better since the shot of antibiotics earlier today. She’s sleeping right now. As if this didn’t add enough insult to injury, my one year old son Liam is showing signs of strep as well; raspy voice, cough, and hives, although he doesn’t seem to have a fever yet. I’m not sure if this going to affect the surgery yet. Dr. Daniel is currently out of the country, but is scheduled to be back tomorrow; so I don’t know how much he knows about Krysti’s condition over the past couple of days. I don’t like the waiting. I’m not sure if we mentioned this anywhere else in this website, but the tumor is directly affecting one of her vocal cords, so we are going into this knowing that she will lose the use of at least one of her vocal cords. They said there’s a possibility that she’ll lose her voice completely which I think is the hardest thing to internalize. I think the voice issue is what Krysti and I talk about most when we are alone. But we are thankful that this was diagnosed at all. Most cases of this kind of tumor are discovered post-mortem. Things could be a lot worse; she could have lived her life thinking she had asthma and then one random day an allergy would have caused the tumor to swell leading to asphyxiation; this could have happened while I was at work and she was home alone with the kids. When we think of the scenarios that could have played out, we are extremely grateful for the current situation. We are so thankful that Dr. McNamara, Krysti’s primary care physician, ordered the CT scan.
October 17, 2004 - Disease Perspective
This is the last weekend before the surgery. Krysti has been sick this weekend, running a temperature of a little over 100. Her throat has been sore, and today white spots have developed at the back of her throat, although her temperature is now down. We are a little worried that her weakened condition may prevent her from being able to have the surgery on Wednesday. We are going to call her surgeon tomorrow morning to see if this will cause a problem.
I haven't gotten any sleep this weekend, nor has Krysti. Her anxiety level is very high; I almost wish we had gone straight to surgery when this was diagnosed. The waiting has been dreadful, I just want to get it over with. My guess is the anxiety is partially to blame for her weakened condition and the fever. I was up all last night massaging her legs because they were causing her some pain; the psychological stress is taking its toll.
I have been cleaning the house all day today trying to get everything in order before the surgery. When the house is out of order, Krysti's anxiety level really rises. Her dad came up this morning to help out with the kids, so I took the opportunity to go to my mom's house in Richmond to pick up an extra TV for the bedroom so Krysti will be able to have some entertainment during the recovery. I also picked up an electric golf cart for Iain and liam. My dad, Papa to the grand kids, bought it for all of the grand kids, but they are loaning to us to give Iain a distraction; he drives it like an adult. He even does 3 point u-turns. He's a sharp little boy.
October 14, 2004 - Historical Perspective
When I first met Krysti at Mary Washington College in 1995, we used to joke about her "throat monster" as she called it. Whenever we sat down and talked in a quiet place, her throat would make this strange sound as if air was making something flutter; it almost sounded like a low level growl, but it was completely involuntary. Krysti was always very embarrassed by it, so I think she tried to soften the embarrassment by calling it her throat monster. I must admit that she is the only person I've ever met to have a throat monster, but in retrospect I wonder if this was a very early stage of the tumor causing the strange throat monster; there is too much irony in this. At the time we thought it was related to her hypothyroidism; since high school she had had problems with her thyroid, I think she assumed it was related to that. In fact, her raspy voice was somewhat of a novelty to me and my friends who always found it unique and attractive.
As years went by, her breathing worsened. She began to almost gasp between sentences, very pronounced gasps. Over Christmas of 2003 she had severe pneumonia and spent an entire week in the hospital. Undoubtedly the severity was caused by the tumor blocking the trachea, which prevented fluids from escaping the lungs. After that episode, her breathing began to severely deteriorate to the point that she would have to take an enormous gasp between sentences in order to catch her breath. It was at this point that she began seeking medical help for her breathing problems.
Initially, doctors said that her breathing problems were probably a result of the pneumonia and that it may take some time to fully recover. She accepted this and went about her business. However the breathing progressively worsened until she finally broke down and told her doctor that something was seriously wrong and that it felt like something more than asthma. The doctor resolved to get to the bottom of the problem and had a CT scan of her chest and neck. The evening the scan results were returned, I received a call from the doctor while Krysti was out. The doctor said there was a mass blocking the trachea and action would have to be taken soon. The next day she had a surgery to remove the tumor. The whole event was a whirlwind of activity. After the surgery, Krysti couldn’t believe how easily she could breath. We were optimistic and happy that the breathing was resolved by a simple operation in a single day. We really weren’t thinking cancer at this point; we were thinking this was related to her thyroid.
October 14, 2004 - Treatment Perspective
Krysti and I [Krysti's husband] have been so busy lately planning for the surgery and taking care of two high maintenance children that she hasn't had too much time to enter material in this journal, so I'll try and fill in some of the missing information when I can, especially while she is in the hospital for the surgery. This will give everyone an opportunity to check her progress.
October 7, 2004 - Doctor Visit
Today, I was back at the hospital for my bronchoscopy. This is a procedure where they stick a camera (a scope) down my throat to look at and measure the tumor. My step-mom, Betty, came up the night before to help with Iain and Liam and to drive me to and from the hospital. Once we got to the hospital, I realized Iain and Liam should not have been with us. The hospital scares Iain and Liam senses his fear and cries for me to hold him the whole time. Iain saw people in wheel chairs and asked Betty if I was going to be in one. He saw another child crying for his dad as he was walking away with a suitcase. “Why does that man have a suitcase?” he asks—Betty told him he was probably going to stay overnight. Iain got upset at that and Betty reassured him that I was coming home today. “I’m frustrated with these doctors always taking mommy.” When we walked into the office, they both started crying and wanting me to hold them. The nurse took me back almost immediately and Betty had to take them outside. My heart broke listening to their cries. Once again, I had to leave my children. The thought of not being able to take care of my own children angers me. I feel like I’ve let them down. They don’t deserve to have a sick mother, they need me to be healthy and holding the, playing with them, reading to them. I’d give anything today to be taking them to the park. Instead, I’m back here once again in a sterile room, wearing another hospital gown and surrounded by people who don’t know me. I had three different nurses come in my room and ask me questions about allergies and medications I’m currently on. I’m sick of being one of the hundreds of patients they process everyday. They go home and “shake it off” and start again the next day. I just want someone to know my name, where I live, sometimes I just want to stand in the middle of the nurse’s station and scream: “MY NAME IS KRYSTINA DAWN ALBUS MAYERS! I AM A MOTHER! I AM A TEACHER! I LOVE COMEDIES AND CHILDREN’S BOOKS! I COLLECT SEASHELLS….I’M SCARED OUT OF MY MIND---I JUST WANT SOMEONE TO SMILE AT ME AND KNOW MY NAME—I’M NOT ‘Ms. Mayers’…..I’M KRYSTI!---JUST SMILE, COME IN MY ROOM AND SAY “HI KRYSTI!!!!”
I’ve now been brought back to a room with bright lights and a monitor that will show my tumor. This is a far cry from where I was last week. This time last Thursday, I was standing on the 9th deck staring out into the ocean. I was hoping to see dolphins or whales—the bigger the fish, the bigger the thrill. Instead, I saw these tiny flying fish that would leap out of the water and scream at my eyes to notice them. It made me think of God. I feel so small next to this ocean, but I know that God has even the tiniest of creatures in his care. He notices me in the same way I have noticed these flying fish instead of dophins or whales. It comforts me to have a faith in God, to know that there is a higher power who made me and will take care of me.
They have heavily sedated me for this procedure and I don’t remember much, but in the end, I started to choke, I couldn’t breathe and I started to panic. My arms were thrashing about and the nurse was holding me down. I finally heard Dr. Daniel say he got enough and he finally pulled out the scope. I was gagging, crying and apologizing—hoping I didn’t mess things up and feeling stupid. Dr. Daniel said I did great and that everyone has the same reaction. I was wheeled to a recovery room and handed a remote control. Coming out of sedation and waiting for Betty, I came across one of those reality shows on TV. It was about a group of women living together in a house with a counselor. There was one woman who was crying because she was told she couldn’t wear make-up for a week. I’m not sure what was going on, I was still groggy, but remember being in awe at this woman crying over make-up and wishing I had her problem instead of mine.
September 27, 2004 - Personal Perspective
I really don't know where to begin. Alex wanted to do this website for me to help educate others about ACC. I think at this point, it has only been a week since my diagnosis and everything still seems surreal. My brother-in-law Dave and his wife, Kirsten have graciously paid for a Disney Cruise Vacation for me, Alex, Iain and Liam. We will be with them and their two sons, Reid and Matt. Iain and Liam are having a blast with Reid and Matt and I'm enjoying being around Disney World again. It truly is one of the happiest places in the world and I feel like a kid again. We are on a charter bus now, which is taking us to the cruise ship, but only 4 hours ago, I was relaxing in a swing on the beach of the Grand Floridian Resort. The beach crew were cleaning up the debris left by Hurricane Jeanne. There were eight of them putting the beach chairs in place and raking the sand. I had left our own crew and sat in solace beneath the overstuffed clouds. As I'm sure with any cancer, there's always the looming angel of death that sits in the back of my mind. I wonder if I'll be here next year or any year after that. As these thoughts continuously roll in my head, I realize how thankful I am at this very moment for the days I have now. "Live like you're dying", I've heard once before, and it truly took cancer for me to put my life in a truer perspective. I love children, I always have, and It's great to have Iain (3) and Liam (1) around me. Their fresh lives and innocence keep me young and hopeful and they will be the best medicine for me through all of this. The bus is filled with children close to Iain's age and older and I love to hear all of their little voices, giggles and their exciting gasps as they are peering out the windows at the trees, boats and trucks along the highway. This will be a great cruise, and a week of children, Mickey Mouse and laughter--3 of my favorite things. I can't thank Dave and Kirsten enough for this wonderful trip!! I won't be able to get cancer out of my thoughts, they taint each one. But I am able to enjoy myself now. You just get the crying out of the way, and get ready to fight. I feel llike a soldier, readying myself for battle, picking up my armour along the way. My life will be a battle, but I will be closer to winning every day. In the meantime, the ocean awaits and I can't wait to have my picture taken with that huge mouse!
September 21, 2004 - Doctor Visit
On September 21, 2004 Krysti’s doctor gave us the pathological report that the tumor was Adenoid Cystic Carcinoma. The doctor said he was “surprised” and informed us of the rarity of this disease. He informed us that there may have been some signs of lymphatic metastasis, but he wasn’t sure at this point. Because the tumor is lower on the trachea than originally thought, he is referring us to Dr. Thomas Daniel at the University of Virginia Health System [link] who is a specialist in thoracic and cardiovascular surgery, as well as a professor of surgery at UVa.
As we left the office, they had arranged to have a survivor of throat cancer talk to us as we left the office to encourage Krysti. This was a big help since the initial shock of hearing that you have cancer sets thoughts of mortality in motion. I had an idea that the prognosis was going to be cancer from the time they took us back in the office. The nurses seemed almost overly sympathetic; it gave it away, but I was thankful to have a compassionate practice that was willing to have the forethought to have a survivor meet us at the office. He really helped soften the blow and mentally prepare us for the fight.