By the point I was seeing the Vanderbilt doctor (Dr. Yoda from this point on), I really wasn’t feeling too bad.. but Dr. Yoda was going to wean me off my steroids (remember I said that steroids mask many other disorders and can even make some things worse) so they needed to stop. At that point, that was the plan, wean off steroids and draw about 100 more tubes of blood and wait. He also wanted to repeat the lung biopsy-oh boy! (If you are confused about my excitement, please see my Zombie mouth post.) But at least we had a plan- I was to see him again in 2 weeks. The biopsy was scheduled right after the follow up.
As the day of the biopsy approached, I was a bit anxious. I had already had a repeat biopsy (after Zombie mouth) and truthfully, it was not as bad- they had lightly sedated me and I did not cough up any blood. Yay Me! But it had left me a nice souvenir- a pneumothorax- my lung had “popped” just a little bit. It hurt some, it made me cough like crazy, things could be worse. This was an uncommon complication I was told at the time. Sigh. (I had a feeling that providers were just starting to tell me these things to see if I was up to the challenge of getting that uncommon complication. Tell me only common things that happen!) There was nothing new on the lung biopsy, which was a relief, but they didn’t get a good sample of tissue, which sometimes happens with fine needle lung biopsies. So Dr. Yoda wanted his own sample of tissue read by his own pathologists. I could completely understand him wanting his own sample, so was I game to go through this AGAIN.
Several days into the wean (as the steroids got less) my fever started back. It was just low grade at this point. But I was more tired and nauseated. Not to the point where I wasn’t able to do anything, but once again you could tell that I was sick. I know one thing I was craving more than anything was some “normalcy.” I was really beginning to wonder what our normal would look like. One thing that this situation has really taught me that although you look for a linear path, life and health are not linear. Life is more like a bowl of spaghetti. And the best course of action is to try to “roll with it.” OOOOOOOOO- so not me.
Today Dr. Yoda was very upbeat at our follow up. “I can’t find anything on your test results that would indicate that this is cancerous in nature. I think that you may have an infection. We need to get you into an infectious disease doctor as we wait on the other results and your biopsy to come back.” Well hallelujah- maybe we were getting somewhere. I had heard this before…. I innately knew that I could not wait the couple of weeks it would take to get into the infectious disease doctor that he wanted me to see. But I would try.
The morning of my biopsy was rough. I was not feeling well and regularly running low grade fever. When my fever increased, pancytopenia worsened, which means my platelets and my WBC were falling and the cycle was starting again. I got an appointment with infectious disease the next day (whew) who promptly admitted me the hospital and drew about 100 more tubes of blood. And I once again was beginning to be a “very interesting case.”
BTW the third time was a charm on the fine needle aspiration biopsy- no problems, no complications, but no answer to my medical mystery. Just more histiocytes.