Saturday, June 2, 2012

Austin's Journey

I've been wanting to update my blog for quite a while now. A lot has been going on with Austin and I want a way to keep track of everything. This blog is also nice for y'all to keep up with us and know the latest trials and tribulations we're facing. In order for me to keep this up to date I need to back up and start from the beginning. Friday begins the first day of a big journey for us and I want to blog about it.

So. It all started late January when Austin randomly stepped on the scale and said to me, "holy cow! I've lost 10 lbs!" I was obviously proud of him and congratulated him on his weight loss. It was about that time that Aus was also complaining of night sweats. Severe night sweats. We're talking soaking the sheets having to get out of bed and towel dry off type of night sweats. Those went on for several weeks and after much research and trying to change the environment (freezing out our room, blasting the fan, sleeping with a thin comforter etc.) nothing changed, so we made an appointment with our primary doctor. We talked to her...she thought he was getting hypoglycemic (low blood sugar) in the middle of the night and might be diabetic. This was not the issue, but good try, doc. Aus had his first set of labs drawn February 28th and there were a few abnormalities. He was slightly anemic, his albumin was low, testosterone low, Vitamin D low, but nothing in- our-face concerning. I was actually very concerned about his hemoglobin and hemotocrit but our Dr played it off as nothing and said we would watch it and recheck it in a few weeks. She also referred us to Urology so they could treat his low testosterone. They started him on Clomid to help his body build more testosterone and in the mean time we were writing off a few of his symptoms as symptoms of low testosterone.

Now fast forward several more weeks, and here we are in April. Austin is telling me that he feels better, less fatigued, (probably because his testosterone is increasing) but is still losing weight.

We made another appointment with our primary care doc and redrew all his labs. This was Friday, May 11th. Saturday (the 12th) at 7:30am our primary doc calls to tell us she is very concerned. She asks to speak to me and tells me that his h&h are even lower now, his WBCs are high and his platelets are high. She tells me she wants to him to go to the ED and be admitted to the hospital so we can get a hematology/oncology consult and an ID (infectious disease) consult. She tells me on the phone she was worried about leukemia and myloma. Awesome. Way to freak us out.

We ended up going to our friends wedding that night and then drove home and went to the ED at Duke. They drew a few more labs and basically said they didn't have enough reason to admit him and that his workup should be done outpatient.

We spent the next 2 days trying to get Aus a quick appointment with hematology/oncology, and got an appointment in 4 days thanks to some of Austin's family connections. That appointment, May 17th was when the heme/onc Dr ordered more labs and a Chest/Abdomen/Pelvis CT. Our appointment was 5 hours long!! Aus parents and my aunt Susan were all waiting in the waiting room for us. The first thing the doctor told us was that he looked at Austin's blood under a microscope and it looked great, meaning no abnormal cells and no leukemia's (hugh sigh of relief). After a bunch of "this is normal, and that is normal" we then got a big BUT. BUT we found this mass on your liver. He said, I have no idea what it is and we aren't even going to talk about "a plan" until we figure out what we are dealing with. SO. A liver biopsy was ordered the next day at Duke and that was extremely fun. Not. Poor Aus. He is so brave but he sure hates needles!! Especially IV's! After the biopsy was over we were told by the radiologist that this "mass" was definitely tissue and was a tumor. He told us now it was just a question of a benign or malignant tumor. So....we wait. We waited until Tuesday and I will tell you it was the longest 4 days of my life. I could not get it together most days. The thoughts of a malignant tumor inside my dear husbands body was just too much to bare. 

In the meantime, once we found out this was a liver issue I began texting and calling some of my old friends at Duke and got in contact with the hepatobiliary doctors (liver doctors) about seeing Austin. They pulled some strings and saw Austin on Tuesday (4 days after biopsy) and we had plans to discuss where we go from here. Tuesday came and at that appointment they told us the biopsy came back as benign (wahoo, or so we thought) but that they didn't believe it. They said they were 90% sure this was a malignant tumor (due to its size and characteristics, plus all the symptoms Aus had been having) which would make this liver cancer. Liver Cancer. 28 years old. I still can't wrap my head around it. 

So, our plan was for an MRI and another biopsy (to get a better sample in hopes of finding out what this tumor really was) in the upcoming days. They scheduled the MRI for the very next day, Wednesday.

After the MRI Wednesday we did some more waiting, and hoping to hear when the next biopsy would be scheduled. 

Thursday, May 24th, we got some great news. The doctors had looked at the MRI and decided they thought the tumor could be operated on and they wanted to take it out. They didn't want to wait, and they wanted to do it ASAP.

They told Austin surgery was scheduled for Friday (this Friday, June 1st) at 7:30am. So here we are. It has been a whirlwind the past few weeks but I am glad we finally have answers and a plan for my sweet husband!  The surgery will last 5-6 hours, depending on several things, and Aus will be in the hospital 7-10 days. They said his recovery process will be about 8-12 weeks and he will be out of work at least 6 weeks. This is a very risky surgery but I am very confident with his surgeon. I know Dr. Clary from working in the SICU at Duke and I am so glad for that. I feel so blessed for Austin to be here and to have so much support from so many doctors and nurses I have worked with previously. This is the beginning of our long journey and I will update more when I can. 

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