Here we go again.

Warning - this is long!

We did not expect to be back at Hopkins until Dan's treatment was to begin but unfortunately he had a pretty major setback this week. He was recovering so well, really. He was even back to himself bitching about my driving and asking to start driving himself soon (which terrified me, not going to lie!). And I was back at the office pretty regularly since my mom was there to prepare meals and my stepfather to drive him anywhere he wanted to go.

So let me backtrack a bit...

Monday - My mom called me at work around lunch saying he had not gotten out of bed and had a headache. He had an OT appt and didn't want to go. He texted me before I left the office asking me to call his doctor to see if we can increase his Decadron which is the steroid he's been on that helps with pressure. He said he was feeling a lot of pressure. When I got home later he progressed to vomiting and couldn't keep the pills down. I was pushing to go to the ER but Dan insisted no. I called the on call neuro once everyone was in bed and he asked me a list of questions and advised me to try to keep him comfortable and get through the night and that if we went to our local ER they would hear his recent history and get him transferred out which is no fun after hours.

Tuesday - I was up half the night with him and emailed Dr. Weingart with a list of his symptoms at a very early hour because I knew something was seriously wrong and he needed medical attention ASAP. I was surprised to get a reply at 6:30 am telling me to bring him to the Hopkins ER. Getting him up to go was difficult since he was so sick and I felt so incredibly helpless. It's so hard watching your spouse in so much pain and there is NOTHING you can do. NOTHING. He was immediately taken back upon arrival and after speaking with the neuro resident and the CT scan showed swelling, they told us he was being admitted. He got settled at around 10 pm and I went home to rest and to be there when the kids got up the next day.

Wednesday - I dropped off the kids and headed down to see Dan and I cannot even explain how I felt seeing him. I guess i expected to see him sitting up watching TV and that the meds would've kicked in over night. I was wrong. There just are no words and I think it was the first time I cried so hard that a nurse had to comfort me. Dan was so out of it that he didn't even notice. I mean, WTF happened overnight was my question. When I left him on Tuesday he was able to walk to the bathroom alone and when he asked me to help him when I got there, I had to call for help. His left leg was just too weak to stand on and hold his weight. He was in a ton of pain and just moaning in bed begging for morphine. He was taken for an MRI and his severe pain lasted ALL day. He had double vision and pretty much kept his eyes closed all day too.

That afternoon, Dr. Weingart came by and delivered the news we did not want to hear. The MRI showed that the tumor that they couldn't get to fully last time has already increased in size - hence the fast onset of symptoms - and he would have to have surgery again. He explained that this time it's very risky based on its position and we won't know until after the surgery if his left side has movement or not. Seriously, it's not even a month and it's grown. And his symptoms were wayyyy worse than even before the first surgery. My head was spinning and Dan was barely awake so I just had to leave the room to process it all. Thankfully my sister and friend dawn were there to be the voices of reason. I came to terms with the fact that he was in the very best hands possible and even if he had limited motion on that side, he was going to be alive and that was all that mattered.

Thursday - Dan made a big improvement when I arrived on Thursday morning. He was up in bed watching TV and said he was no longer in pain. He immediately asked for his phone too which is always a good sign. We found out that surgery was scheduled for Friday so I caught up on work in the room while Dan hung out and even had a visit from his two buddies (Stalls and H as he calls them). I have to say that it was so great seeing him laugh as they reminisced and talked sports. Dan had a smile on his face most of the visit and I realized just how much I missed that smile. So while he had a distraction, one of my best friends Mimi arrived for me. She came to give me a hug and bearing magazines to help occupy my mind with something else. Since Dan was doing so well, I was able to leave to get the kids and have dinner with them. I needed it and so did they.

Friday - Dan was taken to pre-op at 11:00 and surgery was to begin shortly thereafter and expected to be done by 3:30. It was a long day of waiting. Those magazines came in handy and I did a lot of anxious eating. Finally around 5:30 they took me in to see him. He looked good and was very sleepy unlike last time where he was up telling jokes. He did immediately request a chocolate milkshake though! He was also very happy to see Rosemary again, she took care of him after his first surgery. She's just a sweet sweet soul.

Dr. Weingart came in to give us an update on know it went and said he was very pleased and was able to get the whole tumor out but (there's always a but) there are cancer cells in there that need to be treated with radiation and chemo ASAP. Additionally, these glioblastomas like to come back which is why treatment is so crucial.

Saturday - We did find out on Friday that his left side was in fact affected after surgery, and Dan was not able to lift his arm and his leg only a little bit. We've been told some of the lack of movement is from the swelling after surgery and it should continue to improve each day. He can't yet move his fingers on that hand but I saw the thumb moving when the nurse asked him to give a thumbs up and tonight he lifted his arm up a little by himself and it brought me to tears. I could see him willing it up and there it went. That's huge! I know he will get this movement back and it may be slow, but he's got the will and strength.

The rest of today I spent keeping him company while he watched sports. He was moved out of critical care tonight and he has his appetite again and hopefully should catch up on all the meals he missed the last 4 days. When I ask him how he feels he says he's ready to move on and recover at home. Atta boy! Last time he was discharged in 2 days but this time they plan to keep him longer I think due to the left side weakness. Hopefully he proves them all wrong and he gets out in 2 days again.

This is so long and I'm exhausted but I have to add that I find comfort seeing familiar faces since this is his third time on this floor. They all know us and our story and are just full of compassion. You never want to say "it's good to see you" under these circumstances but really, it's good to have the same faces caring for him.

Thank you again everyone for reading and sending all your thoughts, positive vibes, and prayers. They must be working!