Time for an update. It’s been a while.
Starting the end of July, I thought I had a cold. Maybe the flu. Just felt like crap. Figured maybe surfing in the nasty Pacific I had picked up an infection. Lost my appetite. Every once in a while I would gag on something and vomit. Got down to eating very little (like a chicken nugget for the day). Progressively, the vomitting became more frequent and I had persistent nausea. I went back to my onc, repeat CT showed all clear. Prescribed a few different things for nausea, tried this, tried that, no luck. Somewhere along the way I developed a limp. Foot drop to be exact. I had a small peripheral neuropathy on my right foot from the vincristine, but it progressed to my whole foot being numb and loss of function. I wrote it off to a bad back, must have slipped a disc. No biggie right. Well after a month of denial and daily projectile vomitting, my Onc convinced me to go inpatient and figure out what was going on. An MRI revealed 2 spots on my brain stem, 1 on the 3rd ventricle, and a tumor on my spinal cord right in the area to cause the foot drop.
Relapse. The worst word ever right. And not just relapse, but the 1% in a million relapse. It’s not supposed to come back, especially not in the CNS. I have to say I was devastated. The prognosis the first time around was reasonable. This time…not so good. There’s just not enough research or cases to have good numbers. No standard protocol for this. My Onc quickly referred me to UCSD Cancer center to see a specialist in lymphoma. A few days later, I was inpatient, started the new chemo plan, rituxan – Methotrexate – ARA -C. The plan is 3x of RMA ( I go in for round 2 Thursday) then on to a bone marrow transplant. And lots of fingers crossed prayer filled days.
I can’t lie, this time around it has been very difficult to stay positive. This chemo regimen has been brutal. I can’t do much of anything without getting short of breath. Last time I was running 3-5 miles every other day between treatments, now i can barely walk because of my foot problem. The neuropathy in my leg has become very painful (just started gabapentin for that yesterday). My labs have been all over the place. Platelets, potassium, and everything in between. I don’t feel like I’ve recovered from the last round and it’s time for the next one. I’m not looking forward to it.
I guess that’s it. At least up to this point. Certainly there is more than enough fight left to go, but there’s plenty of fight left in me. So I am going at it UFC style. Full bore.
Okay, enough miserableness. The next entry will be a positive one. As always, thank you for reading, and thank you for your thoughts and prayers. We appreciate every one.