I love the theme song to "The Love Boat"...remember that T.V. series? "Love boat...exciting and new...love boat...". That is sort of my theme for today ;-) Ha Ha Ha! I always have the weirdest songs pop up in my head when I start thinking of what is going on at various times. To be so gross, but absolutely on topic, I had that diarrhea song stuck in my head the other day. But that song was stuck in my head because I was thinking of the show "Parenthood", you know the one with Steve Martin in it. I love that show.
Anyway...on to better things besides the scary thoughts in my head. Jeremie has popped up with some interesting things lately. It has been somewhat hard to find my motivation for posting about it. It seems as if I post everything that poor man pops up with I would be writing all day long. And we know how I feel about writing.
So July 4th we got to go to ER again! Seriously the hole stinking day was spent in ER. On Sunday July 3rd, Jeremie was driving the Yukon and said that he needed to tell me something, but that he couldn't because I would make him pull the car over and not allow him to drive. I got that lovely adrenaline feeling pumping through my veins when he said that and just asked him to pull the car over immediately without asking why. He then proceeded to tell me he was having double vision and that he was having difficulty seeing and focusing. Oh man! Heart definitely pumping, having one of those moments of panic. I'm of course immediately thinking "CHLOROMA IN THE BRAIN!". He also told me he was having numbness and tingling in his legs, especially his left leg. Grrrrr!!!!
On July 4th, his left eye would track and move with objects. His right eye would move towards the left, but not the right, so he looked like he had a lazy eye. Very disorienting to look at. He said it was very disorienting to look through! We went to the infusion clinic, and I was starting to get a yucky feeling. I decided to text Dr. Lemon, not panic poor Jeremie. Dr. Lemon who wasn't on call, texted us back and said we had to go to ER and get an MRI immediately. We did what we where told.
We arrived to ER, at least we had a purpose and knew exactly what we needed. In the meantime of being put into a room. Oh yeah...Jeremie had a neutrophil count of 500! And we are in the ER!!!! He had to wear his mask the whole stinking 6 hours! The ER is sooo GROSS! While we where in the room waiting, the infusion clinic nurse called and reported that Jeremie had a critical value level on his potassium and that we needed to go to the ER. Well Howdy! We were already there. How convenient.
So first they did the MRI. I'm thinking yup...chloroma of the brain. And thinking oh my gosh, what is the next few months going to look like now? Jeremie had already been struggling the past week. He had been feeling like everything has been slowly taken from him. His strength...and now his sight...what else was going to be next? Miraculously the MRI can back CLEAN!!!!! WOO HOO!!!!!! Seriously if I could have jumped for joy it would have been 10 stories high. I felt such relief. While waiting for the MRI results. The on-call oncologist spoke with the ER doc and asked if they could repeat the labs. The did a repeat and Jeremie's potassium was actually higher. They wanted to admit him. We of course already talked this out and had a united front of saying NO! Seriously he has leukemia, we know this. Why admit and waste more of our time in the dumb hospital. They gave us a prescription to give Jeremie to get rid of the excess potassium and we went home for fireworks!
Thinking the story is over? Of course it isn't...don't you know our luck yet? As my mother would say if I didn't have bad luck I wouldn't have any at all. We went to see the Doc on Tuesday last week. They can't rule out anything really going on the in the brain, relating to leukemia. The actual nerve that is effecting Jeremie's vision is his right cranial nerve vi (6). This is the nerve that allows the eyes to move laterally or side to side. This is of course the nerve you cannot see on his MRI. While they could rule out large masses or lesions. They cannot rule out a leukemic cause. Since Jeremie didn't have a TIA, ocular stroke or have vascular problems. It leaves leukemia. The opthamologist said the nerve could heal anywhere from 4 weeks to 6 months. Some viruses can also cause this problem. We have also had those ruled out. And what does Jeremie have? Leukemia. Oh and the potassium is still high (the high 5's it was 6.8 for my medical friends out there and his sodium is 120...know why I have a headache now?)
So my gorgeous man is a devil of a pirate. He can orient better if his right eye is covered. We got him a patch :-)...totally adorable too. They can't rule out chloromas or masses on his spine that also might be effecting nerves leading to the brain. And of course there is always a part of you that wants to go running down the rabbit hole to follow Alice, but you have to ask yourself...to what end? What information will this bring. Will we know something different than we know right now? Will it change our direction? Will it bring a better life? Will it cost money, time, energy and cause pain? We already know and knew the answer. Jeremie has leukemia. It is a bit frustrating. 'Cause we have constant reminders that Jeremie has leukemia, there isn't a moment or a day that will go by that we don't have a reminder. He is worn out from it. Tired of it taking little pieces of him and his life he likes to live. I keep saying, "I'm not ready, I'm not ready, I'm just not ready". Even though I know there isn't a loop hole...I keep trying to find one. My brain just won't stop.
Ugh...my heart and mind is a bit heavy. Jeremie had a difficult day Friday. We had to be at the infusion clinic by 8:00 am, then over to the Doc's office by 9:30, then me back at work. Jeremie will have a bad day if he is made to be up and going earlier than 1:00. It wears out his poor body, and breaks my heart. So I have a special request of my family and friends. Please, please, please...do not call him, leave a message or text him before 2:00. He can't turn off his phone as he uses it for a flash light at night. The light from the room disorients him, and he doesn't want to sleep with the eye patch on. If you need something from him or whatever reason you can always call me or text me with your questions or just wait until around 2:00. Thank you!!!
On a happier note. WE HAVE A BACKYARD!!!! Our amazing Ward put our yard in on Saturday. I got up to be helpful with laying sod (was told to expect it to be ready around 8 am to lay). I was out by 8:16 am and the lawn was finished! It is beautiful. I was so excited. It was hard not to go shake Jeremie awake and make him come look at it with me. I probably looked like an idiot. All I could do was stare...so afraid it was going to disappear if I closed my eyes. I spent 5 minutes of my day inside yesterday. I stayed outside the whole day. We ate dinner out there last night and tonight. Jeremie was so excited when he got up. We keep walking around and around it. THANK YOU!!! THANK YOU!!! What an amazing gift. We love being outside. Jeremie loves the back yard and now has a chance to enjoy it :-)
Well I'm gonna go nurse my dumb migraine. Man I'm sick of those...
Love to all of you....
Cori
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