I've been meaning to do this for awhile now, but never seemed to have the time or inclination. It's ironic that I finally have something worth blogging about, and I didn't feel like doing because of what I had to blog about. Or does that just suck?
So, at this moment I am in a clinic at Harvard Vanguard, receiving my second infusion of a chemo-drug called rituxan, or rituxan-ab. Fear not, I have not been diagnosed with cancer, but Wegener's disease, or Wegener's vasculitis, or Wegener's granulomatosis, a rare one that impacts the lungs and kidneys. Basically, it's an auto-immune disease which causes inflammation of the blood vessels and where your body create anti-bodies that fight you. It's very complex, but I think that's the gist of it.
How this all came to light is a whole story, as it usually is. But I've got about three hours, so here goes:
On Valentine's Day, I remember distinctly feeling run down and had a bad cold, and remember coughing up some purple stuff. It was slightly alarming, but figured it was part of the cold and it didn't persist, so I bought some Thera-flu and moved on.
As the days and weeks went by, I started feeling really run down. Thinking it was due to the bad winter and being sick and generally feeling depressed, I still pressed on. I don't mean to brag, but I have a pretty high threshold for pain and have always subscribed to the "Walk it off" theory driven into me by my dad. And it's amazing what you can put up with and just keep telling yourself, "Man, I'm tired." Being at the doorstep of 35 probably didn't help matters.
Eventually, I felt like the walking dead, but Spring Break was coming so I figured I could take a couple days off from work and recharge my batteries. Well, Spring Break and my days off came and went, and I still felt terrible. But I was determined to walk it off. Still, I knew something wasn't right so I did what anyone would do in my situation; I asked my chiropractor what was wrong. Naturally, right? Coughing up blood? Feeling like crap? Ask the chiropractor. (In his defense, he is one of the smartest people I know) His diagnosis from me trying to push my legs against his hands? Take some iron.
Now here comes the part where you can decide whether fate was involved or just the way things happen. I've been diabetic for 16 years and obviously had my share of ups and downs, but my blood sugars were as high as I had ever seen them and nothing I did could really bring them under control. Eventually, I made an appointment with my doctor. Sadly, despite the fact that I told his receptionist I was really hurting, it was another week before I could get an appointment.
I saw the doctor and he couldn't immediately figure it out, but as soon as he saw me his first words were, "You don't look good." Not something you want to hear from your doctor, even if he was right. I had lost about ten pounds and looked gray, but nothing was obviously wrong. So, he took some blood and gave me an exam and adjusted my insulin. That night, around 10:00 (which I found strange), I got a phone call saying that some of the blood tests were really strange-looking and I needed to come into the hospital to re-take them because the office was obviously closed. I was kind of shocked, but they persisted, and even sent an ambulance to come get me. (Dursy's first ambulance ride!)
I was in the emergency room for awhile as they rushed around, stuck things in me and to me, and told me that my red blood cell count was less than half of what it should be and I needed a transfusion. A couple pokes and prods later, I was admitted to Beth Israel Deaconness Medical Center. Despite the severe anemia, no one yet knew what was wrong with me.
Five days in the hospital, and I was given a lot of tests, including a CT scan, an MRI, a bronchoscopy (where they stick a tube down your throat and look in your lungs) a bone marrow biopsy (where they stick a very large needle into the bone at the back of your hip and extract the marrow to look for lymphoma) and even sticking a huge Q-tip up my nose. All of this came back negative, except there was still blood in my lungs. it was determined that I had a gland on the top of my lung called a thymus, which was causing everything but could be removed on an out-patient basis, and I was told, best-case scenario, that gets taken out and everything goes back to normal. Finally,with what I thought was a diagnosis and with two new bags of blood flowing through my veins, I was sent home.
Three days later, I saw a rheumatologist for the first time, and he said he had seen my files and wasn't convinced that the thymus was the issue. More bloodwork was ordered (9 tubes, in fact) and once again, that evening, I received a call saying that I needed to go to the hospital. I protested and kicked and screamed, but cooler heads prevailed and the next day, I was at Beth Israel. Same floor even. Same nurses. The only real kick in the face was that it was the day before my birthday. Certainly the worst one ever.
I was finally diagnosed with Wegener's, and because of it being so rare, I was seen by about a billion doctors (including 4 kidney doctors whom I dubbed the Marx Brothers. The "Groucho" was already telling me to freeze my sperm because of some of the side effects of treatments that I wasn't even receiving yet. Not really a great bedside manner.)
Still a concern, they wanted to biopsy that thymus, which they determined was mostly filled with fluid. While going in to extract some of it, they actually pierced and collapsed my lung, which they told me was extremely rare. So, bucking the trends again, eh?
The next day, a tube was inserted into my chest to suck out the air pocket around the lung to create the room it needed to re-inflate. After all I had been through already, THIS was by far the most painful experience. The doctor performing the procedure said there would be a little pressure, but it was literally as much pain as I had ever been in in my life. And it had nothing to do with the Wegener's.
The second hospital stay lasted one week, and included a stay in intensive care to get my sugars under control (the steroids I'm on cause my blood sugars to go pretty high) But I am now home and on the mend. Two more treatments of rituxan after today, and eventually a tapering off of the steroids, and hopefully I'm basically free and clear, if all goes according to plan.
Were I not diabetic, would I have gone to the doctor at all to see if they could get the sugar down? That is the real question. Obviously, there is no answer, but the reality is that I did and they doctors were able to catch it before it got even more severe because, untreated, Wegener's will kill you within months. I wouldn't say I had a brush with death or anything, but it does change your perspective a little as far as what's important.
Which brings me to Dursin's Final Thought; I want to throw out a thanks to all the folks who visited, sent a card, an email, gave me a call, or just generally thought good thoughts about me while I was laid up. It really helped and still does help as I recover and deal with this thing. I love you all and I guess all I can really add to that is, "Keep up the good work." It is still needed, and very appreciated.