Jen's Cancer & Medical Updates
Update: My story has taken many twists and turns. Who knew this would end up being so complicated? It's been discovered recently due to a GA-68 scan that my Carcinoid cancer remains stable in my liver. I was diagnosed 3 yrs ago (Feb. 2010), at the age of 40 with Stage 4 Carcinoid Cancer. Without the donations and that scan, we would still not know which spots were cancer and which were what has turned out to be an advanced progressive case of Sarcoidosis and Pulmonary Fibrosis.
It took drs 9 months to figure out what was spreading all over my body. I ended up at Mayo Clinic, and after meeting with several drs and many tests, a bone biopsy of my L3 vertebrae showed signs of Sarcoidosis and no signs of cancer. Sarcoidosis is an autoimmune disorder where the body attacks itself.
My Sarcoidosis is not following the rules or anything the drs think they know about it. It's one of the most advanced and progressive types of Sarcoidosis they've ever seen. It's been diagnosed as Advanced Chronic Progressive Multisystem Sarcoidosis. It has caused a lot of damage to my lungs, causing Pulmonary Fibrosis (which has a 2-5 yr life expectancy). I went to the specialists at the Cleveland Sarcoidosis Clinic. They are presenting my case to a panel/board due to the level of complication of my condition. They will determine the best treatment plan possible.
Right now, the Carcinoid Cancer is in my liver. The Sarcoidosis is in my chest, lungs, liver, spleen, L2 & L3 vertebrae, most of my thoracic vertebrae, as well as my tail bone, my left pelvic bone, left shoulder blade, lymph nodes in the chest, abdomen (above and below the diaphragm), and lymph node chain of the left mammary gland. Sarcoidosis eats away at the bone, making a honeycombed effect - which weaken them and can cause them to break. It can take over and permanently damage organs. It's also caused me to be anemic and short of breath all of the time.
A lot will depend on how I respond to treatment for the Sarcoidosis and how much the cancer spreads during the course of treatment for the Sarcoidosis. I will also be lowering my immune system and be much more susceptible to viruses, bacteria, and infections - all of which could put me in the hospital, cause pneumonia and kill me. So, I have to be extra careful and will be wearing masks in public to help protect myself.
Luckily, we have been able to do some traveling lately. I’ve lived longer than I thought I would. I’m happy that I’ve been able to spend time with family and friends.
Thank you for listening,
Jen Holm
(Jennifer K. Holm)
