Thursday, October 27, 2016

Life sucks sometimes

It's amazing to me how one thirty minute appointment can flip your entire world upside down. You would think after being in the thick of it, we would be used to devastating news, but from personal experience I can say, you never really get used to it. Before I dive into this life altering news, I'll give you all a back story. Last Tuesday (Oct 18th) we got news that Josh was approved for TAD orders. This was something that has been in the works for MONTHS..when I say months, I truly mean it. His command finally got it push through and they were allowing us to go home and wait until Josh's VA results came in. We were so excited as it was one step closer to moving on with our lives. We packed some of our stuff up from our apartment and had it shipped down to our house. I had started looking at schools to apply for my graduate degree and had spoken to my mom about working with her part time. The only thing left to get these orders finalized was to have a few signatures. We had to have the approval of his oncologist, his Navy safe Harbor rep, and his VA liaison. We made an appointment to see his oncologist and on Sunday Oct 23, Josh did his two month check up MRI at 4am. Our appointment with his oncologist was this past Tuesday. We walked in with high hopes, considering every past MRI scan Josh passed with flying colors. We were excited because all we needed was these three signatures and we could book our flight home.

Walking into the room, I immediately knew something was wrong. Josh's oncologist (we will call him Dr. T) and him have a great relationship (as everyone who pretty much does when they meet Josh). They usually banter back and forth about music, videogames, and movies. Josh is always wearing either a really nerdy shirt (star wars are his favorite) or something music related. Dr. T has known Josh from the very beginning and has always made it a point to make Josh feel welcomed and not as just another patient. This particular day the appointment started off as any other appointment but it felt forced. It felt as if he was softening the blow. The moment he brought up the scans, I knew something was wrong. We usually review the scans later on in the appointment or maybe sometimes not at all if there is nothing to report back. This time however, the scans were up. Josh's brain was plastered on the screen for all to see. Now, I am not doctor. I don't spout off medical jargon and I don't claim to know what words mean or what particular conditions are. All I can say is that his scan scared the hell out of me. We all know that Josh has a tumor growing in his left side of his brain. What size it is, I have no clue. I'm sure I could ask, but honestly I don't want to know. I think if I did, I would obsess over it. So this tumor that is there has decided to spread it's ass over to the right side of his brain, causing a new growth. Again, I have no idea how big that one is BUT what I do know is that it's new. We are talking like months new. Dr. T brought up the scan from August and it wasn't there (or maybe it was, I ain't no doctor) but from what he says it wasn't noticeable. So in two months, this tumor has spread over to the right side of his brain. My trooper of a husband took the news as well as he could. He didn't break down and cry (yet) he just held his composure and made it through the appointment. We talked treatment options and most impacting, Dr. T told us to cancel the orders. Once out of the oncology unit, we sat in the front of the hospital and just cried. Dealing with this disease has made us strong but this particular news took the rug right out from under us.

So what does this mean? Well first off, Josh has had no symptoms of this new growth. He hasn't had a seizure in almost two years (knock on wood) and in the past two months has only had one or two headaches. Nothing crazy. No tall tail signs, so these results were a huge slap in the face. Dr. T offered us three options.

  • Do temozolomide. This was the chemotherapy he did for a year last year. It worked really well but Dr. T would want to up his dose. 
  • Do another form of chemotherapy (I don't remember the name and googling it brings me to all types of prescription names). This one would be in a high dose, probably terrible side effects and it also comes with a very strict diet. Super strict. Like annoyingly strict.
  • Drug trial at John Hopkins. Suprise! My husband has a very rare brain cancer. Like rare of the rare, so he never qualifies for a drug trial and actually this trial isn't for the particular cancer it's more for the mutation in said cancer. We don't know if he fully qualified or even what stage the drug trial is in but Dr. T seems hopeful. 
For now, we are waiting on Dr. T to go to a tumor board where he will discuss Josh's case with other doctors and see what they bring to the table. There is also a chance that Josh might have to go back in for a brain biopsy. This will only happen if there isn't any viable tissue from the first biopsy. Dr. T is almost certain that there is a small sample available but if not we will have to prepare for that too. Luckily (or unluckily? who knows) radiation isn't an option. Last time it swelled Josh's brain so much and he was having so many seizures that it probably did more damage than good.

Not only does this mess up our immediate plans to go home and chill until results comes in, it literally screws EVERYTHING up. Josh was in his "final stages" (I say "final" because honestly we have no idea where he was in it) of his med board. Being the fact that they won't release someone without fully treating them, it means his med board has be stopped and he will have to resubmit everything all over again once he is stable again. At first I was bitter about it, but now I have realized that there is a reason we are still here. We are getting the best medical care and Dr. T isn't to proud to say that if he doesn't know, he will find someone who does. So, the connection at John Hopkins is linking us with one of the top doctors in this field. That is something we won't get in Florida and quite honestly would have been a reason for us to come back up if we were down there. We have his appointment on November 9th. It's a second opinion as well as a consultation. They are also going to see if he qualifies for the drug trial.

I am a firm believer that there is a reason for everything. Right now, I haven't figured out what that reason is. I have no idea why life keeps serving us shit sandwiches and it's something I may never know. But what I do know is that I am thankful we caught it quick (we were actually going to blow off this MRI and just get it done once we were down in Florida) and I am thankful that there are options. Right now, Josh and I are still processing everything. Regardless of what treatment we choose, we will be staying up here way longer than what we intended. Does it suck ? Terribly. But we, like always, try to make the best of the situation. That's all we can do.

At this moment, today, we are still processing it. We have basically locked ourselves in our apartment and aside from appointments and our support group we have limited our interactions with the outside world. If you message either one of us, I can't guarantee we will respond as it is still a fresh wound and we are trying to manage it. I ask for support and understanding in this time and I urge you all to please not message him asking questions about this. He always welcomes messages of encouragement and support but right now it is something we still know nothing about. In due time, when more information comes about I will keep all in the loop.
However, we do ask all of you to continue to pray for Josh and our family. My husband is a fighter and he's stubborn as hell so I know he won't go down without a fight. This a speed bump in the road and just like last time, I know he will kick ass.

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