Dan had another set back two weeks ago. Just when he was gaining more independence, cancer had to kick him back down and remind him it was still within him. My feelings and emotions are all over the place. It’s like constantly living on a roller coaster and it sucks.
So here’s what happened. A week after my last post, Dan did his first month of chemo (remember it’s a double dosage of what he was taking before and he takes it 5 days out of the month for 6 months) and totally rocked it. No nausea or anything which surprised us both. But he was extremely fatigued. More than he ever was even during radiation. Than on the night of Monday the 12th, he fell asleep so early which is so not like him after napping all day.
The next morning I tried to get him up to shower since I had to leave earlier than normal to make it to a meeting. So it took me a good 30 minutes to get him up that morning and right before getting into the shower he told me he felt like he was going to fall and the next minute he fell into my arms while shaking. I could not see his face since I was bear hugging him to keep him from falling but when the tremors stopped I asked him what that was and he said “I was just a little off balance.” He was acting like nothing happened and ready to get into the shower and he realized his left leg didn’t work. He wasn’t upset or anything which led me to believe something more was going on. I got him seated on the side of the tub and it happened again and this time I knew. I knew he was having seizures. I held him so tight so he wouldn’t fall backwards into the tub. It was such a scary moment that felt like 5 minutes even though it was probably 90 seconds since his legs were literally giving out and I could barely hold him up. My son Carson (almost 5) walked in during this scene and said so innocently “mommy why are you hugging daddy like that?” and I told him to go get my phone because I couldn’t let him go. Once it stopped, I called the on call number we have at Hopkins who instructed me to call 911 for help asap. Dan was now seated on the bathroom floor and couldn’t move. I couldn’t lift him. His left leg didn’t work. And he was falling asleep. I called our dear neighbors who have rescued us more than once in the past 6 months to come and get the kids out of the house since an ambulance was on its way. (Thank you Robin and Kevin!) Tyler (2) was still asleep thanks to daylight savings and didn’t know anything was even going on.
The ambulance took him straight down to Hopkins and after a day in the ER, testing, and visits from everyone on the team (neurology, neurosurgery, medical oncology), they decided to admit him for further testing. He had a strange rash appear all over his body, another seizure during that day, and major pressure in his head again.
The next day (Wed), his headaches finally went away by the afternoon since they had increased the dosage of all of his meds. He had been having a lot of difficulty with foods and chewing so the speech therapist did a speech and swallow study. We learned that his issues are due to muscle weakness on that left side so she gave him some tips to help him through and wants him to focus on soft foods as much as possible. Dan loves to eat so seeing him struggle, even with his favorite foods like crabcakes, ribs, and Chipotle burritos is enough to bring tears to my eyes.
He also had a CT scan of his chest and abdomen that day which than led to having to have another test called a VQ scan of his lungs the next day. He continued to have this strange rash so they ordered a spinal tap to rule out any sort of infection. Oh boy that was fun. I had to stay in the room and comfort Dan who was shaking uncontrollably due to nerves. I never want to go through that again and I know he doesn’t either since his back was in pain for a week!
On Thursday, we found out the preliminary results of the spinal were fine. And the VQ scan confirmed that Dan had pneumonia and a blood clot in his lungs. We were so confused. There was not one sign of either one of these issues. I have diligently read all the paperwork we have been given about things to look out for like shortness of breath, difficulty breathing, strange cough, etc and he had not one of these symptoms. If he didn’t have a seizure that day, the blood clot would have never been found and if not treated, it’s life threatening. That’s some scary stuff to be told. I now have the pleasure of giving Dan twice daily injections of blood thinners. He really thinks I get joy out of it but I promise I hate it as much as he does.
Finally on Friday by dinner time after seeing dermatology again for the rash, OT and PT, he was released to go home.
Well, we are pretty much back to square one as if Dan just had brain surgery. He is very weak and fatigued. He cannot be alone so someone has to be here with him at all times. His left leg is moving but he has to concentrate hard when walking. He used to only use his cane when out in public and now he can’t go without it. He has foot drop so he has to wear the brace at night and be very careful to not trip over his left foot when walking; and we’ve had a few close calls which is why I have to stay close when he is up and moving around.
He also has barely any motion in his left arm. He was making so much progress in OT and now it’s like starting over again. He also has wrist drop so he has a brace for the arm/wrist/hand too for night sleep. It is supposed to help with stretching the muscles especially the fingers that don’t want to stay open.
OT/PT begin again this week and his next MRI is scheduled for the 12th. Hopefully by then we have some more info on the tumor that is being treated.
So to sum it up, it just f%$cking sucks. Plain and simple. No sugar coating. No other way to explain it. I can’t help but question what we ever did to deserve this to happen to Dan. He is such a great person and I am not just saying that. It took me so long to find my soul mate and cancer has to do this to him. WHYYYYY???? And my two little boys. I just have nothing but tears when I think of them and how much they love their daddy.
I will end this post with a picture of my boys – all 3 of them. You can click on it to see it larger. This is how it used to be. So much fun and full of life. We were always laughing! This was our family vacation on our long road trip to Florida in July. As soon as we got back, the headaches began…..