About Krysti.net

This 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 the future.

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.

~Krysti

Latest Journal Entry

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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!
~ Krysti

Feedback

Private email - If you want to send us a private message, use our personal email addresses:

Krysti | krysti@krysti.net

Alex Mayers | alex@krysti.net

Update

For 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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Thank you for your support

Historical Timeline

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