Yesterday, I posted on Facebook that I was able to pick up the Major from the hospital after a 3 day stay from the mild seizure he had on Saturday night.
Hubby had started having these mild seizures about a month and a half ago in the form of aphasia (not able to speak correctly). The Major has 4 brain lesions caused by the melanoma. He started this process in May with 1. The first lesion was treated at Hershey Medical Center with Gamma Knife. They were quite positive it worked and there should be no other issue with it. They were even talking to the Major about using him as a spokesmodel for the Gamma Knife tool at Hershey. After a few months and starting the new chemo, the hubby started to get headaches that caused hospitalizations. The headaches were caused by swelling in the brain, the old lesion was reacting to the treatment and the new lesions were growing. There was midline shift in his brain and so started the steroids. He had two more trips to the ER after that, one resulted in another admission, the other was the first bout of aphasia that landed him a flight in the local med helicopter. That visit revealed there was no new bleeding in his brain, and no major swelling, so they had no idea what had happened. Thank God for Johns Hopkins.
The Major saw his neurosurgeon and radiation oncologist shortly after and it had been determined that the aphasia was caused by small seizures being set off by the smaller lesions in his brain. One was pushing on his optical nerve which was causing some problems with vision in one of his eyes. Cyber knife was scheduled for the two smaller lesions. The Major had 5 days in a row of treatment and was actually feeling pretty good.
The next day, Saturday, we decided to do a little shopping and picked out a cake for our daughter's birthday. We enjoyed a few treats at the wonderful bakery where we will order all future cakes :) and then came home. We were both wiped out, so we decided to nap. I woke up in time to make dinner and the hubs woke up as soon as I rolled out of bed. He asked me a weird question, and I thought he was still dreaming. Sometimes he has trouble waking up and differentiating between dreams and reality for a few minutes. As I was letting the dog out, I heard what I had the month before. Only this time instead of making up words starting with M's, he was making up words with T's. He had no idea he wasn't making sense. He couldn't comprehend that I was telling him it was happening again. This time I didn't panic because we had gone through it before. I knew what it was. I calmly called the radiation oncologist on call for Hopkins and he told me to take him to the nearest ER. In PA I would have just taken him to Hershey. Even though we lived in this area before, it was more toward the other end of the county so I knew where the hospitals were there...not here. I called the local dispatch center to find the closest one and they instructed me on how to get there. What a HUGE mistake. I work in a city. I mean, no it's not right outside DC, but I NEVER expected to see an ER like this. AWFUL! GHETTO! SCARY!!! The security guards equaled the number of nurses. Every patch that came in over the radio was for a shooting, stabbing, domestic or MVA with alcohol involved. I was speechless. And then the hubby and I just started laughing. We spent 6 hours in the horrid ER room, but the nurse and doctor the hubby had were wonderful. At first they treated us like there wasn't really anything wrong with the hubs. Then they read the CT scan. I saw it on the doctor's face when she came in the room. She told us that the scan showed bleeding in and around one of the lesions and the hubs was being transferred to Hopkins via Inter-Facility Transport. This made me relax and feel a lot better knowing he was going to get the care from his doctors that he needed.
Since transport didn't arrive until almost midnight, the hubby told me to go home to take care of the dog and get some sleep. I knew not to argue because I was too tired to drive the hour to Hopkins and have to come home for the dog in the morning, and turn right around to go back to Hopkins. I knew he would be taken care of and nurses always love him. He has such a great sense of humor he usually ends up making them laugh, instead of them cheering him up.
The next day he was moved out of neuro ICU into the brain rescue unit. Tests were getting underway...MRI, EEG, PET scan, neuro exam every few hours. The hubby was put on anti seizure medication as well as them increasing the steroids they had been tapering down. He looked and sounded much better though and I was glad he would be going home.
We left the hospital right for his appointment with his main oncologist. The one that had started the new form of chemo with the hubby and was following his overall care. The man is usually all business, in his fancy suit and very reserved attitude. He always had a smile for us though. Not that day. I watch people. I study their faces. I can tell things from their eyes, their hand motions, the hesitation in the way they speak. Even seasoned professionals sometimes can't hide their discomfort. Hubby picked up on it too as the doctor did his exam. It was a short exam and the doctor kept running in and out, apologizing for it, but saying he was trying to get a good comparison on the Major's previous scan from Hershey and the one they had just done at Hopkins. These PET scans are used for staging purposes. To see initially where all of the cancer is and what stage of the disease you're in. Hubby started in stage 4. After that, they use the scans to see how treatments are working, if the cancer has progressed or moved, changed or gotten better...or even disappeared.
We were taken into the doctor's office which is where we had our first meeting with him. I remember that he loved Savannah and had given her snacks and liked talking with her. She wasn't with us on this day, thankfully she was with her grandparents.
The doctor started with questions for hubs. They were chit chatting and the doctor knew I wanted to say something. He told me to go ahead. I told him to please just get to what he knew we were waiting for. Please stop and just tell us. His eyes shifted down and a man who usually seemed to be able to smooth talk anything was at an almost loss for words. Finally he came out with, the scan shows new cancer, some old cancer is gone, and some is still there and bigger. Bottom line is the treatment didn't work the way I had planned on. There is still too much melanoma. He said there was another treatment he wanted to try, a pill form that hubs could take at home and just follow up every couple of weeks. I stopped him again. I finally got the courage to ask him what had been swirling through my brain, torturing me every day and night. "Are you trying to save his life or give him more time??" Again, the hands folded and he looked down at his table. He looked back up and said "At this point it's all about time. Most patients with multiple brain lesions only make it 3-4 months. Your husband has already surpassed that. So to say 3-6 months would be reasonable."
I had to be sure I heard him right. I repeated the time to him and he said yes, but hopefully the pill would give us some more time to come up with another plan. If the hubby's brain lesions weren't under control when the new trial comes out, however, he wouldn't be eligible for it.
I sat, trying to control the quiver in my lip, the tears streaming down my face, the urge to scream. More time, we needed more time. That had to be wrong. He looks so healthy other than gaining the weight from the steroids. That couldn't be right. They kept talking, questions and answers kept coming. The doctor saw me shove an Ativan in my mouth and he got me a glass of water. At that point I was feeling so queasy I had to excuse myself for the ladies room. I fell down in the corner of the public ladies room. I didn't care who saw me. There was nowhere private, there were no friends or family, just a phone call to the one person I trust to be straight with me and whom I know will listen and not judge no matter what I say. Hub's nurse case manager. I was hysterical. I couldn't breathe, I couldn't see, I couldn't talk. That had to be wrong, I needed more time. He needs more time. Our daughter needs more time. With the help of my friend on the phone I pulled it together and went back to the hubs and doctor. We left the building and things started hitting me. I was seeing Christmas decorations angry and devastated that if the doctor was right, I will be alone with our daughter next Christmas. We went throughout our day, I promised the Major lunch at Cheesecake factory and he wanted to get me boots for my dress I bought for his promotion ceremony. We sat down for lunch and it was going ok. Then phone calls started coming. One from his previous commander who is now in Germany. I had asked her to call me. Tears rolled as I told her what was happening. There were tears on her end too, which made me cry more. She was family to us, and we love her just as much as she loves us. I knew she would take it hard. Not just because of our bond with her, but because she had already lost and Airman to cancer.
The next call came from another previous commander who happens to be doing the hub's ceremony. I wanted him to know what was going on so he wasn't blindsided when he got her next week.
The next call was the Major's nurse case manager checking on us. I had told him I can't do this. He called to tell me that WE can do this. The Army, the hubs, our families and friends. He reassured me that I wasn't alone. That gave me the strength to suck it up for the Major the rest of the afternoon.
The tough job of telling parents was done. We just needed a break before we told everyone else. Please don't get me wrong, I in no way am giving up on my husband. I am in no way discounting what God can do. I just have to be a realistic planner for our future and use the timeline given to try to get us settled and enjoy as much time as possible.
I am absolutely terrified. I'm not going to lie. Some people may look at me and say that if I'm scared I have no faith. Say what you will. Especially people who aren't living this. I don't want to live my life without my best friend, the love of my life, the father of my child, the man I thought I would never even get to date, but actually did marry him. I'm extremely sad to know our lifestyle that we chose is coming to an end. No more dining out's, award ceremonies, PCS's, new jobs, new military friends, our retirement home in South Carolina. I don't even want to think what my life is going to become right now. I don't want to think of a life without my husband. But yesterday I was told I have to start thinking about it. I was able to shove it out of my mind and pretend it wasn't happening. That maybe some miracle would happen with this treatment and he would be healed and then eventually cured. Instead I was told my husband would not return to work, the new treatment only has a 20% success rate and that is only in adding time. I won't give up on him. I believe if anyone can be stubborn and fight hard just to prove doctors wrong, he can.
But living with that guesstimate, we are planning fun things. Europe, Disney Paris, the UK and perhaps Disney World. It's bitter sweet. I want our daughter to have those experiences with her father. I want to make memories with both of them that she can look back on forever. Knowing she was born with the best father ever and instead of being bitter and angry, she should be thankful that she comes from such a man. That someone loved her so extremely much. I have to keep the fears to myself. The fear of being a single mom. The fear of not doing a good enough job with our daughter. The fear that I won't be able to provide what the two of us would have. I want her to live every day knowing that she had the best father and that I will do everything in my power to make sure she gets where she wants to go in life. She is my number one priority. I don't ever want her to feel like she isn't.
Now is the time for the Major to write letters, to make memories, to make plenty of videos. We're starting to look at houses to settle into in hopes of having some time with him in the place our daughter and I will live. I want it to always be our house. I want her to remember her father there. Even facing these things head on, I can't believe it. I'm sitting here next to the man I love trying not to break down at the though of sitting on this couch without him in a few months. I hate it. I hate this. People keep telling me how unfair it is, how this shouldn't be happening to us. One woman told me there is no advice for this. There is nothing anyone can say. And she was right. Nothing that is said or done can make this different. I just ask for continued prayers. I want as much time with my soldier as possible. Every day that I wake up and have another day with him, I will be thankful.
Love to all of you dear friends and family.
