be gentle with yourself / you're doing the best you can

We have been playing this cancer game long enough to know, when your oncologist office calls to tell you to come in, it's not good news. In my mind, I went over the countless things it could be. Maybe she was taking a vacation and needed to see us before she left. Maybe his blood results showed something abnormal and she wanted us to have the blood drawn done in Orlando. Maybe he contracted a disease from his blood transfusion. Maybe. Maybe. Maybe. Then, my heart dropped to my stomach. An MRI was done on Tuesday. Josh's profile is flagged allowing his doctor to really be on top of his case. Anything that comes through about him; whether it be blood work, lab results, or an MRI, his doctor usually has the results within days..if not hours. My stomach was doing somersaults and I had to calm my mind from racing about a mile a minute. They told us to come in before 1 pm, it was 10 am. I got dressed as fast as I could and I remember the lump in my throat while I was brushing my teeth. My heart was racing and I could tell a panic attack was coming on. Just as I finished, my mom called to tell me that she was here to drop off her dog. I met her in the garage and she just knew. She hugged me and I broke down, letting the panic attack take over and I cried and cried. She kept saying "maybe it's good news." And I remember distinctly saying "we never get good news." She called her boss, told him the news, and jumped in the car with us to drive over to Orlando.

I never cry in front of Josh. Scratch that, I try really really REALLY hard to never cry in front of him. If something upsets me or he says something a little hasty, I usually go into our bathroom or closet and cry it out. I don't know why I do this but it's something I have developed over the past few years. I tend to believe that it's because I don't want to seem weak. I'm supposed to take care of him. He's supposed to rely on me when shit hits the fan. But instead, in this instance, it was him holding me. His mind was racing, probably faster than mine, and yet, he was the strong one. I was ashamed and silently scolded myself over and over the entire drive to Orlando. I am well aware that I am entirely to hard on myself. I get that. But in my situation, I have to be.

Once we got to Orlando, we were ushered right into his doctors appointment. Her nurse was able to squeeze us in between appointments. I was watching her moves and how she was talking to us to try and figure out what we were really there for. Most people can't hide it when they know about bad news. But I never know how to read his nurse. She is probably the most upbeat person I know. She always has a smile on her face and she is always joking with Josh. She was the one that called to have us come in. I heard her on the phone while Josh was speaking with her. She's just happy all the damn time. It's one of the many things I really like about her because you never feel out of place there. They all welcome you with a smile and try to make it as easy as it can be. This time was no different. I let out a breath that I was probably holding in since Palm Bay. I felt at easy. Maybe whatever they had to tell us wasn't as bad as we thought it would be. Maybe this would be the one time some good news would come out of the doctors visit. I allowed myself that slight glimmer of hope. She did his vital signs and actually gave him a flu shot because he was already there and needed it. I remember when she left the room Josh turned to me and said "I'm going to be so pissed off if that's the reason I came in." I had to laugh, because I knew that it was crazy to think that, but at the same time that would have been kinda funny. Any ways, his doctor walked in. Again, I can't read her. I don't really know any of these people that well, not as well as our previous oncology team. I do know that if she's got no news, she tends to notice the tension in the room. Basically every appointment we have ever had with her, we are always on edge not knowing what she is going to say. Last appointment she walked in and noticed we were tense and even said "why is it so gloomy in here, do you guys know something I don't?" We laughed. This time, I knew it. I knew that she was sensing the same thing. She was delaying. She did her usual neuro exam, she asked him if he has had any symptoms, asked about the blood transfusion...regular stuff. She then turned to her computer, almost to shield herself from having to see our reaction, and said "Now..you're MRI showed something." I knew it. I freakin' knew it.

She brought up his scans and showed us what she saw. Last June, he had an MRI done. Results showed a bright spot on his scan, which they assumed was radiation damage. That's what Dr. Theeler up in Bethesda had assumed as well. Now, there is a new growth. Same bright spot, but it's to the left of the initial bright spot. My heart sunk but I knew right away that this meant the chemotherapy wasn't working. That tore me up inside. I have seen his body go from an active (well...relativity active, lol) 30 year old to being weak and frail. All this work for it to not work really hurt me. I hate seeing him go through it, even worse when it doesn't work. She started throwing out treatment options. First one being going and seeing a neuro oncologist. Neuro oncologist are like unicorns, they are rare. And really really good one, is extremely rare. However, the blessing in that is that they usually all know one another. Before we left Maryland, Dr. Theeler gave us a number for Dr. Avgeropoulos, a neuro oncologist in Orlando. When we met Josh's oncologist at the VA, Dr. Carilli, she told us that she actually did her residency under Dr. Avgeropoulos (we will now call him Dr. A haha) and she still keeps in contact with him. The day she told us about the new growth, she said she had spent all morning on the phone with him discussing Josh's case. So, first order of business was to go see the man himself. They called Friday to schedule Josh. Dr. A is booked solid until November...and even then it was a long shot. But because he's been ghostly on his case since January, he said he would take him on as a patient. We actually see him tomorrow. Second order of business, is to have a brain biopsy done on the new growth. My stomach turns every time I think about having to do that again. Last time he did really well but I was a complete mess. Luckily for me I had my parents and master chief (I mean, John..he's a civilian now!) to help me through it. I have to keep hope and I know he's in good hands. The neurosurgeon comes recommended by Dr. Carilli so that eases my nervous...a little.

Now, what's the treatment option? Well, since we don't know what the growth is, they want to determine it with the biopsy first. If it's a continuation of his already disease, then we can start a new treatment. If not? Well, we'll cross that bridge when we get there. The new treatment however, would be a pediatric one. They have seen success rates in children with this disease at 70%. That doesn't mean remission, that means stabilization which is what he has been fighting for the past 3 years. It will be a completely different regiment. This one will require us to go to Lake Nona three days straight every month. He will be getting chemo through his port. We haven't made plans yet, but I'm almost certain we will just be staying in Orlando for those three days.

This news took us by surprised and we have taken a few days to sort it all out. When we got home from Orlando, we crawled under a rock destine to shut the world out. We cried and held each other. We were emotional eaters; silently celebrating the fact that we don't have the strict procarbazine diet anymore. We binged watched a few Netflix shows. We were just together. One on one with each other, trying to digest everything we were just given. Luckily my mom threw herself into action and came over to help me clean, cook, and even went grocery shopping. I really hit the lottery with my parents, they are always there when I'm not at my best. We knew this would be coming but we didn't expect it this way. On the plus side, Josh was able to complete 4 rounds, or six months, of chemotherapy. While it's a defeat, we always try to look for the silver lining. He still has options.