My Adenoid Cystic Carcinoma Journal
January 13, 2007 -
It is now January 2007--Have I really gone a whole year without writing on this thing? I guess that's a good sign. In review of 2006--it wasn't a terribly bad year. I had quite a bit of scar tissue from the surgery and radiation that was making it hard to breathe. I bounced from palliative care to pulmonologist, to thoracic surgeon for about 4 months before we finally figured out what to do. My thoracic surgeon decided laser surgery was too risky for me and would only cause more scarring so instead, in November, they performed a tracheal dialation. What they ultimately did was a rigid bronchoscopy. Given my past troubles with things being stuck down my throat, I knew this time to demand to be knocked out. What do they care? I'm paying for this--right?! They agreed, and within an hour, stuck a metal pipe, basically, down my throat, complete with camera and actually twisted it around in my trachea to "stretch" it. When I awoke, I felt so good. I was actually breathing 100% air-it filled my mouth and filled my lungs all at once. It felt good to be able to get air in my lungs, easily. I was so excited and the doctor even told me I looked good down there--he said there was a bit of scar tissue, a lot of mucous, but other than that, no signs of tumors and that news will always bring a smile to my face. Unfortunately, the openness I felt in my airway, soon went away by the second day after my surgery. It didn't, however, go back to the same restriction, but it didn't feel as open as the first hour after the procedure, so I'm resolved to live with this for awhile.
After doing a few return visits in December, Dr. Blackhall, my palliative care doctor, felt like I did not need another scan until December of 2007. "What?" I asked, surprised and with a big grin, "I don't have to see this place for another year?!" "Nope", she said, as long as I wasn't having any other symptoms,"I'm good to go"-----Did you guys get that? I'm good to go!! 2007--I'm good to go, so here I come!
December 22, 2005 - Personal Perspective
With Christmas just 2 days away--I'm dragging a bit. I would like to believe it is from the excitement and busyness of the season. Liam is at the age of wonder this year--he loves the lights and the tree--everything is so exciting to him and he even sat on Santa's lap with no fear! This christmas is better than last which was better than that previous year - so in my mind it can only keep getting better--right? I just want 2006 to be my year--I don't want procedures, surgeries, death sentences, doctor appointments every week, abandonment, depression--is it possible? Could I actually get through this year like a normal person? Could I go to the doctor because I have a slight head cold rather than "abnormalities". Have you ever been on one of those rides that spin you around so fast, the floor drops out from under your feet and you don't fall but stick to the wall and your eyes can't keep up with the spinning and you have to close them? Your head feels so heavy, it could almost pop right off your shoulders and launch to the moon. That's the way I feel constantly. I just want the ride to stop so I can get off and stagger my way to a bench to rest. There's a bench ahead engraved with the number 2006. That's my seat and my christmas wish is to get off the ride. Thank you all for your prayers, they will help me get there. God Bless you all and Merry Christmas!
November 20, 2005 - Personal Perspective
Has it been this long? It's November and so many e-mails from people wondering if everything is all right with me. Well, that question is one I can't answer clearly. After May, when they found the "abnormality"--we waited until July 18 for another "look see". I always tell people that 18 is my lucky number because the wonderful loves of my life all came on an 18th day. My marriage to Alex was July 18, Iain was born on April 18 and Liam was born on June 18. When July 18 came--I have to say, I was excited because I just felt "lucky" about this next scan. I waited the week or two or three it may take for the oncologist to give me a call about this abnormality update. No response. "Should I call them?"--I thought to myself, 4 weeks later--and you know, I thought again--"Hey, no news is good news--right?!" And that was the attitude I decided to take until the last week of August. I awoke on a Thursday morning with excrutiating pain in my left ear. It was debilitating. I couldn't give the pain justice in my description of it to you, but it was deep in my ear and traveled down my jaw line and fell beneath the jaw to a sore spot where my glands are in my neck. Everytime I swallowed--just swallowing saliva, eating food, drink, anything, a sharp pain, like a stabbing knife pain would hit the back of my throat, on one of the adenoids, and shoot right up to that one ear. I was bedridden for that whole weekend and finally got an appointment on Monday with my palliative care doctor. Noone called me about my scan. What if something really wrong has happened? They gave me percocet and sent me to my ENT. "I hear your jaw clicking"--he said--"I'm going to say you have TMJ"--My response to him was surprising as I heard myself say, "You do know I have Adenoid cancer and you don't think that this pain could be related in anyway?" Was I snooty in saying that? I just wanted to be sure he knew--could this pain be as simple as a TMJ diagnosis? I took it--it wasn't a cancer diagnosis--so I took his explanation and with a bit of relief and a lot of pain decided to try to deal with it for the next few weeks. September was hell--I was in my own personal pain hell. Have you ever heard of people who have committed suicide because their physical pain was so unbearable--nothing helped anymore? I know that I could never bring myself to suicide, but I certainly wanted to die. I could not eat or drink or get out of bed. I couldn't take care of my children, my house, I could no longer work--the pain was controlling every aspect of my life. Did Alex know that when he took the kids downstairs to feed them, to play with them, that all I could do was sit in my bed and cry? What a worthless human being I had become because of this pain and noone could tell me why except that it "sounds" like TMJ. I am very grateful for the ENT's expertise--but if you had an adenoid cancer patient in your office with an abnormality that has shown up on the last scan coming to you with pain in that adenoid region--could you simply dismiss it as TMJ? I began to have my doubts and September 26, my birthday morning, I woke up and decided I truly wanted to die. The pain had not driven me to suicide but it drove me to desperation and I cried to God to take my life. "God, please, if this cancer is going to kill me, please let it do so quickly, preferably before Christmas." So far, my 30 somethings have truly sucked. At 30, I was hospitalized with pneumonia, 31, diagnosed with cancer and now 32, truly dream of death as the ultimate escape from this torture. My next scan would be October 5. My palliative care doctor has since taken over my files as the oncologist, the radiologist, the surgeon and the ENT were black holes of explanation. The radiologist recommended a flouroscopic exam of this abnormality as there was concern of the growth. This was an exam that I was never actually told about until my ENT opened my file in front of me to read my July 18 scan report. Remember that scan I never got answers to? I was so fed up with being shuffled around and blown off by these guys, who during treatment were extremely attentive but after treatment, they simply cut my life line and allowed to float away in deep space. I took my frustration out on the ENT--"Nobody has given me the results of my July 18 scan, I am now in excrutiating constant pain, which you say is TMJ, and I just can't deny the coincidence of my pain with my scan reports." Through the sobs, I managed to get his sympathy and together we read the report. "Flouroscopic exam needing to be scheduled for further observation" he read at the end. "What's that?--nobody ever told me to schedule a flouroscopic exam! I got no word or call back on that--this has been since July?--It is almost October and I am just now finding out about a very important procedure that I should have scheduled and would have scheduled if somebody would have just picked up the frickin phone???!!!!!" (I hope I said frickin)--Needless to say, the ball was dropped on me and as a lifelong cancer patient--this is unacceptable. I decided then and there that I can no longer rely on my doctors, I can only rely on myself. This is my fight, not theirs, and I need to take full responsibility. Leaving that office that day, with a flouroscopic exam scheduled, I decided I was no longer going to lie in my bed, physically, nor mentally. I do want to live and I walked to my car a new person.
My next scan was October 5 and the abnormality was slightly larger again. By October 20, my flouroscopic exam was scheduled and my doctor's appointment with results was to be right after. During the exam, I had to swallow this barium liquid. Actually, I had to hold it in my mouth and swallow little bits at a time as the scan was right up on my neck taking pictures. The barium did not taste too bad, I guess I was just relieved about getting more answers to this pain. I was feeling better. My pain pill consumption had been cut recently and I found myself not needing as much Ibuprofen or bed rest. Dr. Blackhall walked into the room, her hand extended out to shake mine. "Congratulations", she said, "we got the results back from your barium swallow and whatever was there is gone." My cheeks hurt from my smile--I guess it had been a long time since I was able to smile. I just thanked God and couldn't believe my troubles were over.
It is 4 days before Thanksgiving--I still have a little bit of swallowing pain--which, from what they tell me is the scarring from the radiation. I guess I never fully understood how long the effects of radiation could be drawn out. I've passed my one year anniversary of my surgery--with no celebration as I would like to forget about it as soon as possible. I will pass my one year radiation anniversary in March and looking forward to a wonderful spring.
Well, that was my long and boring update for all of you--I'm sorry--I just want to forget about it all and every once in awhile, I think I can, but I won't. I write this journal for so many of my new friends who have been diagnosed with ACC or any other type of cancer. I want to be your voice, your tears, your frustration, your fears--so that everyone else can hopefully try to understand how our lives have been forever changed.
What am I thankful for this Thanksgiving?--Iain and Liam, Alex and family and close friends--you are the ones who keep me going--you are the ones that help me get out of bed and you are the ones who stand outside the boxing ring and cheer me on during this very lonely fight.
Thank you all!
May 20, 2005 - Personal Perspective
A close friend of mine feels quite out of place in her life. Adopted into this country when she was 5, she has moved around quite a bit, and now, while all of her other friends have roots in new purchased homes, she is still renting with her husband, still trying to figure out what she wants to do with her degree or where she wants to send her child to school. They just renewed another year contract on her rental house, so she decided to buy lots of flowers and plants to make the place a bit more cheery. Something, however, has kept her from wanting to plant them into the ground. She kept them in their pots around her porch, not wanting such beautiful flowers to have the chance to take root into ground that she does not want to stand on. That's the hardest part about life, are we ever on ground on which we want to stand? Did our lives become what we dreamed as children? Or do we resist to bury our roots where we are because, just maybe, something incredible will happen and we will be able to pick up our pots and go! My backyard is my oasis. We have a trickling pond, japanese maples, azaleas, roses, ferns and ivy. To sit on my bricked terrace and watch the ivy climb to my dining room bay window, I could almost transport myself to Tuscany. My husband is the gardner and is always welcoming new plants in our home garden. They freely take root in our ground and happily bloom, loving their new home and never wanting to leave. There are too many of us that can't find that simplicity in our lives. Why can't we just take root and be happy and bloom where we are? Why does there always have to be a maybe? a what if? a what now? Wanting that greener grass in someone else's yard will always keep us in our pots and not in our ground. Does it matter if the ground is just a rental? Sitting in my backyard now has taken a different meaning for me. I look at the flowers and the ferns and wonder how much longer will they have in my ground than I will? Cancer has suddenly made my life feel rented and has made me a weed and no matter how hard I try to take root, something or someone will pluck me out. Maybe I could be a flower in a pot instead not taking root, not yet, but waiting for cancer free ground somewhere, sometime--sometime soon I pray. I went today for my CT Scan follow-up results. They have found another abnormality in my trachea. They have decided to wait for the "weed" to grow before taking any action. My next scan is July 18, and until then, maybe I could try to bloom a flower instead, a beautiful flower in a pot by my porch.
May 19, 2005 - Personal Perspective
Each week is getting better for me. I finally feel like I'm crawling out of the pit cancer dragged me in.
When I think of that pit, It's dark and deep and dirty and my hands are dirty and nails, jagged, trying to claw my way up. I do see a light, it can't be a train coming to run me over because trains don't run into pits. I do see the sun, I feel it's warmth and pray for the rays to be as ladders for me to climb out. Every once in a while, my sun is blocked by faces, some kind, others not so kind. Faces from my past looking down on me and I haven't decided whether I want to ask for their help because I'm not sure I can trust all of them to pull me all the way out or to just pull me up halfway and then drop me again, to the bottom. Sometimes, i just want to sit curled up in my piit and try to ignore the faces staring down at me. Every once in a while, there are "How are you doings?" and kind cards that flutter down to my feet. These gestures help me look up and I begin to see hands trying to help me out. Some people are there, helping with the struggle, but then they leave and others are there the whole time and have never left. "Come on Krysti--just grab our hand, you can do it." Those people are still there, and I begin to trust them that they won't drop me, they will always be there trying to help me out. I reach towards them, I feel a pull and my feet have lifted off the dirt floor. Thanks to so many of you who are still hunched over with your arms extended out, I am slowly making it. Feel warm from the sun beating down on your backs, knowing that warmth is a gift of mercy and grace--thank you for keeping me in your sight, thank you for pulling so hard--I'm coming, I'm going to make it--as long as you're there.
April 8, 2005 - Personal Perspective
I have decided to write a quick journal entry today to explain my depression. It has been extremely frustrating for me to battle a depression that I've never had to deal with before. Usually every day or every other day, I have gone through periods that have lasted a couple of hours when I basically curl up on my floor and zone out. Iain and Liam are running around me, I manage to function but I'm like a zombie or a robot. There's a little person inside of me that screams to get out, and I want to snap out of it. I consciously try to "snap out of it" but physically cannot. I could be talking on the phone or visiting with someone during these periods or even be in church or the grocery store. It's not my fault and all I ask for is acceptance and understanding that my life is in a time of trouble and I struggle everyday to get through. Maybe one day you will find yourselves in difficult situations as I have, but I assure you that there will always be someone who will understand and accept you during your bad days, bad months, bad years....me. I appreciate everything that everyone has done for me and that is what this website was for. Some days I am truly too busy or too depressed to pick up the phone or send a card of thanks, which is why Alex put the "thank you" page on the website. I just want all of you to know that I'm still healing and there will be a time very soon that I will be able to show all of you my love and gratitude. Thank you for your unconditional love and support and thank you for your patience. Nothing anyone has ever done for me and my family has ever gone unnoticed. God Bless You All!!
April 3, 2005 - Personal Perspective
It has been a month since I have even wanted to write on this website. It's been hard for me to keep up because quite frankly, now that my treatments are over, I just want to not think about it in any way. I went to my first Young Adults with Cancer support group Friday at UVA. It's made up of people with small children, no children, UVA students--all of us with cancer and asking the same questions. It was great listening how this group struggled with the depression or the "why me?" question. The most interesting aspect was the loss of friends that some of the others experienced. I've been hurt most by this part of the disease. I know now not to take it personally, I know that my old friends don't know how to be around me anymore, but I've also found out who my true friends are and I have to thank cancer for revealing the true characters of many of the people in my past and present. I thought for months that there was something so unlikeable about me and that was why I have never heard from some of these friends again. I realized on Friday, that a lot of the patients in my group have dealt with losing friends. There was this girl who was a recent graduate at UVA and looked like she was the most popular girl in school. She was somebody I would have loved to be around and yet during her chemo for a brain tumor, she experienced close friends abandoning her. I couldn't belileve my ears to hear her talk about it. I would sit alone in my house staring at old pictures from college or high school and cry from frustration and hatred of myself, wanting to know what I did wrong? Why don't they call? Why don't they write? Why have they stopped? But I came to the realization listening to this girl, that it wasn't me, it was them. It's one of the many notches you have to put in your "cancer belt". Another discovery I had made on Friday was that eveyone had a story to tell. It was amazing to hear about the different fears that everyone dealt with on a daily basis. I fear leaving my children, never seeing them grow. One guy feared leaving his wife, another girl feared never having children again. Do you remember ever hearing a coach tell you: "It's not whether you win or lose, it's how you play the game." I have joined the "Cancer team", picked from a line-up in Gym class, not wanting to play, but to sit on the side and watch. Will we win or will we lose? Or is the way we play all that matters? There is no way to tell for any of us. We can pray all we want, but does God already know who's running for a touchdown and who's going to be tackled? Okay, so enough of the lame analogies, but my questions still remain, and there will be no therapist or support group that can answer a single one. None of us will ever know the answer. We all have different stories, and this has been mine. I probably won't write as much for now, but please, if you are true to your heart, let me know you're still there. It helps me get out of bed in the morning. Like every good team, we all need cheerleaders on the side to get us through the game.
March 2, 2005 - Doctor Visit
It's been a week since my last treatment at the Cleveland Clinic. They did a procedure called Brachytherapy where they stick a catheter through my nose, down my trachea and into my lungs. Some people have limits, and after my bronchoscopy experience I knew those limits! Being consulted on this treatment I was very specific in explaining to the doctors what I needed as far as sedation. I explained how my bronchoscopy experience was and how I needed to be a little more comfortable for this procedure. I think my number one rule for all doctors and nurses is: LISTEN TO YOUR PATIENTS!!!! What really ticks me off is that when I was talking to the doctors in Cleveland about this procedure they all nodded their heads in understanding and reassured me that I won't feel a thing. Let me just explain to you this experience. First, they gave me a shot in the rear of Demerol which only made me extremely groggy but you can still feel things being prodded in your nose and lungs! Then I was wheeled into a room where the guy numbed my throat by spraying a horrible bottle of a "banana flavored" numbing agent--(thanks to the thoughtful drug companies for flavoring that--by the way, it doesn't work because it was still horrible, stinging and nasty!!!!) Then the guy took this large cotton swab with a numbing gel and stuck in way, way up my nose--and left it there for awhile. At this point, I know I was very unpleasant with anyone that came in that room. I also told everyone that they need to take a Saturday afternoon and experience this for themselves so that they know what it feels like and won't nod their heads at their patients and tell them they won't feel a thing!!! Then came the tube which was stuck up my nose and taped to my face in which they threaded the catheter. I could feel them moving the catheter down my throat and literally felt it in my right lung--that was not pleasant. And, wouldn't you know, everyone had to leave the room for about what felt like 20 minutes to take scans of where the catheter was placed--to make sure they got it right. And here comes my gag reflex, feeling the tube in my throat, my body tried so hard to get it out through coughing and sputtering and gagging. "Try not to cough!" I heard a nurse say in the other room--Did I give her the finger? I don't remember, but I definitely thought about it! I just love doctors and nurses who tell you how you're going to feel with certain procedures that they have never experienced! That has been the single most frustrating thing for me during all of this! After my x-rays, they wheeled me into a room to hook a tube up to my tube. Through this tube, a radiation capsule, the size of a grain of rice would go down into my tube and work its way back up while dispensing the radiation. That took no more than 5 minutes and I was done. I literally coughed my tube out and then just cried from the experience. I'm not saying this is hard for everyone, but it was the worst for me. I never want to experience that again, and if I have to I better be knocked out like a dental patient! It has taken me awhile to write about this experience because I've just been trying to recover from it. A week later, today, I can't swallow, the pain is intense in my throat, which I hope will be better next week. I think at this point, I'm just so exhausted from everything. I still don't know how to deal with it all and I just want my life to go back to normal. I'm beginning to realize it never will.
February 22, 2005 - Doctor Visit
Krysti and I are currently in Cleveland where Krysti will receive an internal radiation treatment called brachytherapy in which a small tube will be run through her nose down to her lungs, emitting radiation as it moves. Krysti has requested to be sedated during the process, but apparently this procedure can be done while the patient is fully conscious. After a few unpleasant experiences with bronchioscopies, she has insisted that she not be awake during this final treatment.
We came up to the Cleveland Clinic cancer center earlier this month to have a consultation. Initially we were led to believe that she would need four brachytherapy treatments over the course of two weeks. During the consultation, however, the oncologist informed us that only one treatment would be sufficient. I'm not sure what the radiation level is, but I think this is more intense than the radiation treatments she finished last week. The catheter will be run all the way to her lungs; primarily to ensure any microscopic carcinoma cells that may have metastasized to her lungs are eradicated. The first location that Adenoid Cystic Carcinoma metastasizes to is the lung, so this treatment is really a preventive treatment. The primary reason they only want to perform one treatment is that this procedure can weaken the scar tissue that is currently holding her trachea together. There is a remote possibility, and I must stress that this is a very remote possibility, that the radiation treatment could actually weaken the tissues to the point that the trachea could actually break apart at the resection. In the doctor's words, this could happen "within two weeks, two months, or even in two years." But again, this information was disclosed on the basis that this has happened in the past, but it is not likely to happen again. I don't think trachea separation is a valid risk for us, but it does frighten Krysti slightly, mostly because of the ambiguous timeframe of "2 weeks, 2 months, or even 2 years." For more information about this procedure, visit www.brachytherapy.com.
Regarding this website, we primarily put this site up to help us keep family and friends informed about Krysti’s progress, but secondly to provide information to others who may have Adenoid Cystic Carcinoma identify symptoms that Krysti was experiencing years before her official diagnoses. I keep a log of all the queries people search on Google to find this site, and we have been very pleased to find the following strings appear in the list, which means people may be finding answers that may save their lives:
heartbeat in ears
hurts to swallow
trachea cancer tumor
signs of adenoid cystic carcinoma
mass on trachea
something in trachea
"allergic reaction" antibiotics
This has been an unexpected pleasure of journaling this experience on the web; knowing that someone we have never met, and will probably never meet, may have this cancer and will be prompted to go to his or her doctor and say, “I have trouble breathing, I get sore throats frequently, my energy level is low, the asthma treatments aren’t working, I had pneumonia: I found a site on the web where someone had all these symptoms…think I may have Adenoid Cystic Carcinoma.” Even if this only happens once, it would be enough.
February 6, 2005 - Personal Perspective
As some of you know, I will be going to Cleveland Clinic to finish the rest of my radiation treatments. They will be putting a catheter down my trachea and administering internal radiation therapy. As far as the depression goes, I'm still fighting. I guess I'm just so angry at everything right now. I know God has gotten me through so much but I've just come to terms with myself that I don't want God to get me "through" anything anymore I just want him to stop me having to go "through" anything at all. One of the psychologists at the Cancer Center told me that we all have heavy backpacks we're carrying around. Everything inside each person's backpack is different, but it doesn't make one person's lighter than the other. I liked that perspective because it made me realize that it was okay to feel sorry for myself and to cry and to stop feeling guilty for crying because "God has blessed me so much". It's harder everyday to smile and to get myself out of bed. I'm tired of being strong. I'm tired of waking up every morning and wondering "what color mask will I wear today?"--for my friends, my children, my church. My faith was destroyed when my mother died and usually people get a good 10 years in between personal tragedies, but in my personal life, the trials haven't stopped in the past 5 years. Everytime I think I see a light at the end of the tunnel, it just turns out to be another train running me over again. I'm just so thankful that Iain and Liam are strong and healthy and all I can do at this point is pray that God would spare them. I'm very thankful for the blessings and miracles He's given me, but I'm still trying to find answers and I guess I've always been. I didn't have time since my diagnosis to think about anything except getting through--now that it's almost over, I 've realized that wave of trouble has washed away everything that was left inside of me. I can only pray now to be picked up and carried the rest of the way because I'm too tired to go on.