Finally had my consultation at City of Hope. Wow, what a facility. First class all the way. Everyone is friendly, customer service is amazing...they provide a patient navigator to help maneuver through everything....and no waiting for anything. Lab work, check in, all that was so smooth. Very impressive. I'll be in good hands there, that is for sure.
Me, Leslie and my Mom drove out there. It's 32 miles from our house, up the 605 freeway. I checked in, gave blood and urine, we had a bite to eat, then met with the doctor.
So....the plan of attack is that sometime around cycle 5 or 6, I will undergo a autologous stem cell transplant process. In theory, at this point in my chemo, the cancer will be going away, and what they do is take my stem cells out and blast them and me with chemo to kill all remnants of the cancer and then put the cells back into my marrow. This process, in combination with my normal chemo, is supposed to be pretty good in getting me into remission. Obviously this is a simplified version of the process. And there are a lot of things that need to happen before we can do this process. Also, during this process, I'd be in the hospital for 3-4 weeks.My immune system during this process is essentially non-existent. So I need to be isolated, monitored and kept away from anything that may infect me. I can have visitors, but they have to be healthy, and wear masks and gloves. Whew....pretty overwhelming right there. 3 or 4 weeks. That's a long ass time, but I'll do it. And then after the hospital stay, I'll need to stay pretty isolated at home for a couple of months.
And like I said, a few things have to happen before we do this. Number one is get my kidneys better. They've taken a step backward, so we need to get more aggressive on the treatment. Yesterday's doctor added a new medicine at home to treat the kidneys and is going to recommend to my oncologist that another chemo be added to my treatment mix. I pee a lot. At night I get up 4 or 5 times to go. So I've cut back on my fluid intake a bit. That's bad. Hydrating and keeping the kidneys with liquid is super important. So it's more water and more juice for me. Peeing is good, and the more I pee, the better. So like I said, before we can do the stem cell process getting my kidneys better is super key. The kidneys is also what scares me a whole lot. When they talk permanent damage (which I do not have) and dialysis (which I do not need), that is pretty powerful. I'll drink more water, I'll tell you that.
My anemia is getting worse, which also doesn't help the kidney recovery process or my energy. It sounds like I might be getting another transfusion soon. Gotta get the blood count up.
And there is the whole tricky diet thing. Balancing between a cancer diet and a kidney diet is tough. They're like two distinct things, but have to work together. City of Hope has nutritionists on site, and the doctor is going to hook up Leslie with that person. The patient navigator might also help with this.
All in all it was an overwhelming, scary and maddening day. But when I step back and think about it, it's a good plan of attack and one that will get me to remission. It's a long road ahead, but we'll do it. Not much choice on that.
Now you have a team behind you and one of the tops in the country. And loads of friends and family on that team.ReplyDelete
Love you, mom
It's the bottom of the third inning in one of our team's most important softball games. Bases loaded....two outs...our team opponent's leading hitter at bat. You Matt are at shortstop.ReplyDelete
The batter hits a hot smash to my right. I (Matt) field the ball cleanly and throw it to first. The ball sails high over the head of the first baseman, into the bleachers-two runs scored. I fling my glove to the ground and kick it. Finally out of the inning, I head for the farthest corner on the bench. Not far enough from my coach, though.
"Japinga!" He sits down next to me and puts his arm around my shoulders.
"Sucess is never final". Failure is never fatal. It's courage that counts. Go out there next inning and hold your head high!!!!
Whenever I face failure, that's been my prayer for strength and courage to go on my way, confident in God's forgiveness and support. Luv sis
Thanks for the update. Sounds like a lot to deal with, but a lot of hope too (makes sense as they are the CITY of it!). Feels good, to me at least, to have a plan. Lucky for all of us that you are one of the strongest people I know and can definitely take whatever they throw at you! You have always been the guy to remind everyone else what we are capable of...and now we are here to do the same for you. You can do it, Matt --JuleeReplyDelete