Then one day the doctor called me at work to tell me that the radiologist didn't like my x-ray. That my film looked like lymphoma and that I might have "The Big C" as he put it. Well that scared me to death!!!! He told me that I needed to have a CT scan and then a consult with an oncologist. I hated that oncology appointment. My stomach sank as I was in the waiting room thinking, "am I one of them? one of those people who have cancer? is that my life now?" He took me in for an exam and then showed me the CT scan. Its been 7 years but I remember it clearly. It would have scared ANYone to death. I had these huge lumps in my chest cavity. It was unmistakable that there was something wrong. He said that he just wanted to see me that day to establish himself as my doctor in case the biopsy comes up positive. I was then referred to a surgeon. That appointment was literally a day or 2 before I left. He told me what they were going to do - a mediastinoscopy, where they would create a slit below my neck and put a tube down my chest and then slip the tool in that would grab samples for biopsy. Also I guess they were able to look around with a camera at that time and view the involvement.

Both the oncologist and the surgeon told me that I could have lymphoma or something else which is kind of rare. They thought the lymphoma was most likely. Although the oncologist told me that there is a high rate of recovery for that type of cancer. Still!!! I was so scared.

I went on vacation and had as great of a time as I could given the ordeal I was going through. It should have been the time of my life but I had to work really hard to make that happen. It really was a great vacation. But I digress.

So after vacation I had the operation. Lucky for me, the pathology came back sooner than later. My doctor called me to tell me that I had "that other thing, the rare thing". What a relief! Of course my primary care doctor didn't know anything about it and had to research it. When I went to see him after that ordeal I told him that I was so relieved that it wasn't cancer but something new had come up. I had a hard lump underneath my skin on my arm. He said it was fat. What a jerk!! And I can say that because he had made a comment previously about my weight, so I thought that was really insensitive. I told him that I felt very strongly that it was NOT fat and was concerned. He did a biopsy in his office. Lo and behold, the pathology came back with sarcoidosis. I had an additional type of sarcoidosis and this one was really uncommon. Anyway, since then I have new doctors. But also since then, my arm lumps have gotten really ugly. After the first bump appeared, it became purple and grew to be big. Then more came. So far, these have been limited to my upper arms, but now I seem to be getting one on my nose. How horrible!!!! I can't hide this damned disease.

I've also had one attack on my eye. I woke up one day and couldn't stand the light. Any light. It was unbearable. I had an inflammation caused by the sarcoidosis and it was brutal. Fortunately it was short-lived.

Sarcoidosis fact: It's rare, no known causes or cures. Can kill, but in 80% of cases it just goes away (well...remission). Mine has not gone away.

Mine is in stage one (meaning no pleural effusion). Meaning lymph system but no lung involvement. Stage I is supposed to resolve but my sarc is chronic.

MY TYPES:
For all labs and notes click here.

Thoracic

Lymphadenopathy: lymph nodes
Mediastinal [view x-ray]
Bilateral hilar - larger on the right. (3.0 cm x 2.2 cm). Peri-hilar fullness [view CT]
Enlarged pretracheal (2.8 cm x 2.0 cm) [view CT]
Right lower paratracheal (with calcification)
Confluent left para-aortic (7.0 cm x 2.0 cm ) [viewCT]
Retro-peritoneal - several, mildly enlarged
Subcarinal

Pulmonary: lungs
The lung parencyma appears normal. There is no pulmonary nodule. There is no pleural effusion. This means my sarc is Stage 1.

Other Organ Involvement

My Spleen
Several enlarged lymph nodes in the hilum of my speen. The spleen is normal in size but has numerous small low-attenuation regions best seen on the narrow windows. [view CTs]

My Ocular: eyes
Iridocyclitis. A form of uveitis with 2 kinds of inflammation: iritis (inflammation of iris) plus cyclitis (inflammation of ciliary body). [view diagram]
Bood-shot eyes, extreme light sensitivity, blurry vision and pain. Lasted a couple of days. No recurrence.

My Cutaneous: skin
Cutaneous, on upper arms and nose, presenting as large purpleish plaques and hard nodules underneath the skin.

This is my right upper arm. The biopsy scar is still visible in the middle of the upper sarcoid. The nodules used to be more solid but over the years they've dissapated a little. So now they're barely round and some are disappearing in the center, leaving a hard ring of granulomas on the outside.

This is my left arm

Sarcoidosis lesions. I got this one on my upper lip in 2005. I thought it was just a pimple or cold sore but it never went away. I hate it! Lipstick doesn't cover it because its still a lump!

Now one of the plaques like on my arms is starting to form on my nose. Its solid but not too hard. Doesn't obstruct or hurt. I can cover it with makeup but its getting harder to hide over time. Its raised a little.

There is NO CURE for sarcoidosis, and the cause is unknown. Researchers must have funding to find answers.