The Illness

This is the blog that I have put off for 2 months now. It started last year in early December. Greg started saying his ankles were bugging him and swelling. We thought at first that he had sprained his ankles at Jack's basketball game. Everyday they got worse until he hurt so bad he could barely walk by the end of a day. Finally, he decided it wasn't a sprain and went to his regular Doctor. I don't think his doctor knew what to think or thought it wasn't very serious. He did some bloodwork and sent him home. Well, everyday began to get worse and the swelling and pain spread from ankles to knees and on up. He also had a red rash like place around his lower legs. My first thought was Lymes! The rash had to mean something. So, his Doctor told him to go to our Dermatologist. Dr. Ray knew immediately what the rash was. He told him it was Erethma Nodosum. He could tell him what it was but not for sure how he got it. He said possibly he had walking pneumonia and that was how it started. So, he sent him for a chest x-ray to look at his lungs. When we got the results of the chest x-ray they decided to send him for a CT Scan to look more closely at his lungs. In the mean time the Doctor had run several more test and ruled many, many things out. No Lymes, mono, lupus, ect...
He went in for the CT Scan and it seemed like it took forever for the results to come back. Greg actually called his Doctors office to see if they knew anything and the nurse told Greg he had them but was getting a second opinion before calling him. That of course made us a little nervous. In the mean time Greg has gotten really bad and is in so much pain he can't hold the kids or be on his feet for very long. Every joint on his body was now in horrible pain. He comes home from work and goes to bed almost everyday. They did try one round of a medicine, a steroid I think, and he felt better and we thought this is it! But, once the steroid is cut back to a small dose the pain comes back even worse. So, the CT Scan finally comes in and when Greg calls me to tell me what he said I could tell he didn't really want to tell me everything. First, they are pretty sure he has something called Sarcoidosis. It is blah, blah, blah... Then he says "there is also a small chance and mind you it is a small chance they are pretty sure it is the other but a small chance..." And I'm saying just tell me!! "A chance it is Lymphoma". I don't remember anything else he said that night. I shut down for a while and needed time to process what they were telling us. I cried a little and called my mommy of course. After her pep talk I was ready to face it and deal with whatever God had in store for us. You see, I don't think God expected me to be totally alright immediately or to not ask some why questions. It is all a part of our human nature that he gave to us. I decided that night that I would keep it in check for my kids! I wanted them to know that even with daddy sick, life would go on as normally as possible. So, if I was going to cry or have a why me moment it would be when I was alone! I also decided that night that I would not play the what if game, we would not look things up or listen to people with horror stories. We would face whatever it turned out to be once we knew for sure what we were really dealing with. I didn't even think about the possibility of Lymphoma because we just simply didn't know for sure anything.
So, here we have this random illness, my perfectly healthy husband, and the next step.
We needed to have a biopsy as soon as possible to find out which of the two it was.
We went in that same week on Wednesday and saw two surgeons. One was a thoracic surgeon and one a pulmonoligist. The decision was for the thoracic surgeon to do the biopsy because of where the lymph nodes were located in his lungs. The biopsy itself was a little unnerving. We scheduled it for that same Friday. I think the fact that all this happened in one weeks time was scary. The biopsy was to gather a large amount of lymph nodes from the lungs because they were what looked suspicious to the radiologist. Ok, more background, the rash on the legs could have been caused by either of these diseases also. The enlarged lymph nodes also could be caused by both. So the only way to know for sure which it was, was to do a biopsy.
Friday morning early we checked into the hospital for the surgery. They did more bloodwork and a new chest x-ray. Then we sat in pre-op for a while and the surgeon and anesthesiologist came in to talk to us. They asked a lot more questions and then left a nurse to prepare him. I leaned into the doorway to hear what they were saying and overheard them both saying they felt really sure it was the Sarcoid! I hung onto that all during the surgery. I was told it would take an hour or an hour and a half. Two and a half hours later I was getting very nervous. I think mom, Kristen and Stephanie could tell I was beginning to get really upset. Just then the surgeon came out to tell me Greg looked great and the preliminary results were Sarcoid so they had pumped him full of steroids and pain meds. He told me he could tell that Greg was in horrible pain and they really wanted to give him some relief!
What we do know about Sarcoid is that it is an auto immune disease. It can affect any and several organs. Most people don't know that they have it. It affects mostly African Americans! Greg was only actually in a 3 % chance to have this. The organs it affects the most is the lungs. We wouldn't have known he had it if we didn't do a chest x-ray. It also caused the rash thing on his ankles and that rash thing causes joint pain. The Sarcoid also can affect your joints in a small amount of people. So basically, Greg got a double whammy of joint pain by having these two diseases. He is now on a steroid and we are beginning to deal with all the affects of the steroid he is taking. That is another blog, another time!
I am so grateful to God for taking care of all of us during this ordeal. I am also grateful to many friends and family for their kindness and support.
We know that we have a long road ahead of us but are ready to face it with each other and God beside us!