site contains my journal from the time I was diagnosed with
Adenoid Cystic Carcinoma (ACC) to the present. I hope my journey
can help others who have the same disease come to terms with
their own journeys and look to the future with hope. I have
tried to be as honest with this journal I as can be, especially
when dealing with issues of fear, depression, and anxiety about
As a result of this journal, I have met many wonderful people
who share the same disease and struggle with the same feelings I
have expressed in my journal. I want to thank everyone who
as supported me and continues to support me in this struggle.
For those who may have just been diagnosed with Adenoid
Cystic Carcinoma, I have consolidated what I consider to be some
of the best information resources about the disease on my
Adenoid Cystic Carcinoma page. I have
included some of my personal
medical x-rays, CT scans, and photos of the the trachea tumor, resection,
and radiation therapy to supplement the material. Some of these photos are extremely detailed.
I hope this material will help everyone who has just been
diagnosed with adenoid cystic carcinoma better understand the
roadmap ahead of them.
Latest Journal Entry
here to view all journal entries
January 13 -
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!
the past year and half since my last radiation treatment, my breathing
has been deteriorating. Scans have found that scar tissue growth
from the trachea resection is beginning to block my trachea. Currently
the breathing space in my trachea is 6mm, which isn't much. I will
be getting a laser procedure to trim out the scar tissue in the
coming months. My doctors are certain this isn't tumor growth, so
this is very good news. The physicians will know more after I have
the procedure. There is some concern about doing the procedure because
the weakened area of the trachea could separate if too much stress
is placed on the area.
Your ACC Stories
If you have ACC or know someone who has ACC, I encourage you to post your stories
on my site. Over the course of the last few years I have received so many emails with personal stories that I thought it would be great for everyone else who has ACC to benefit from them. There is a healing process that occurs when you know you aren't alone in the fight, especially with a rare disease. Thanks for sharing your stories!
Also feel free to post information about physicians or
treatments that have been successful for you.
Click Here to Post Your Story
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useful information and you'd like to help me keep it running
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Thank you for your support
|December 22, 2003||Krysti admitted to hospital for pneumonia|
|December 26, 2003||Discharged from hospital|
|July 25, 2004||Krysti begins treatment for asthma|
|September 14, 2004||CT scan performed due to Krysti's breathing problems|
|September 14, 2004||Dr. McNamara identifies mass in trachea on CT scan images|
|September 15, 2004||Dr. Steven Early confirms tumor on CT scan and performs bronchioscopy|
|September 15, 2004||Dr. Riebel performs surgery to remove tumor from inside of trachea|
|September 21, 2004||Pathological report of removed tumor identified as adenoid cystic carcinoma |
|October 7, 2004||Pre-surgery bronchioscopy to measure tumor|
|October 14, 2004||Krysti has fever and sore throat|
|October 18, 2004||Krysti diagnosed with strep throat|
|October 20, 2004||Surgery postponed due to strep throat|
|October 25, 2004||Doctor determines skin rash is allergic reaction to antibiotics|
|November 1, 2004||Dermatologist determines rash is psoriasis and is caused by strep, not antibiotics|
|November 10, 2004||Updated Surgery Date|
|November 11, 2004||Moved out of ICU|
|November 15, 2004||Returned home from the hospital|
|November 23, 2004||Chin stitches removed|
|December 13, 2004||Radiation therapy consultation with Dr. Larner and Dr. Keene at University of Virginia Cancer Center|
|December 20, 2004||Fitted for radiation therapy head and torso mask|
|December 28, 2004||First radiation treatement|
|February 4, 2005||Consultation at the Cleveland Clinic|
|February 11, 2005||Last radiation treatment at the University of Virginia Cancer Center|
|February 14, 2005||Begin brachytherapy at the Cleveland Clinic (tentative)|
|February 22, 2005||Internal radiation treatment at the Cleveland Clinic|
|August 15, 2006||Excess scar tissue growth blocks trachea|
|October 18, 2006||Doctor determines rigid bronchoscopy needed to stretch trachea opening|
|May 29, 2007||rigid bronchoscopy to stretch scar tissue - breathing space at 5 millimeters|