I haven't posted in a few days, more like a week. First, I would like to thank everyone, again, for your kind words and thoughts and most of all prayers, they seem to be working. I want to semi quote what Cliff said to me in his comment.(LAST ENTRY) He said that attitude is everything, and he is so right. Scott hasn't lost hope and is still saying that he is going to beat this thing. That is a plus, that is a great step toward recovery. So far, the chemo hasn't made him sick or he hasn't lost his hair, he has been able to "feel good" about things in general, with the exception of the days that the steroids have worn off, those aren't great days, they are "Let's get th eheck out of his way," days. Our general attitude around here is that Scott is going to be a survivor of Multiple Myeloma, he is going to live with it for the rest of his life. He will monitor and keep it in check, and die from old age! We know not wish for this.
Yesterday, we went in to Manhattan to see the stem cell doctor. He really didn't give us definate answers, and we have to accept that. We do know that Scott is on the schedule, for Feb 21, harvesting of stem cells. That is a plus that the word tentative was removed from the scheduling. Now we must wait for the bloodwork taken yesterday to come back. His blood counts were good, but the IGA protein, and the Syreum(pardon my spelling here) light chains weren't and wouldn't be back until today, so we wait. In the mean time, he needs to schedule another round of chemo, because he needs to keep his counts down for harvest. That makes sense to us, as he is on NO meds at this time. Everything, I mean, EVERYTHING was discontinued as of this past Saturday.
The doc says that there are a few things that can happen as a result of the numbers attained in the blood work.
1. Scott's counts can be down, and the harvesting and transplant will proceed.
2. His numbers will be up and his chemo must change, therefore postponing the whole process.
The second option is not feasable for Scott. He is about ready to go out of his mind. It wouldn't be a pretty situation around here, he is UGLY when things aren't moving smoothly. Not that I begrudge him for that, I get how frustrating it can be, and most of all I hate to see him in the middle of all of this. He gets panicky, and then we all have to try to calm him, which is frustrating for him and for the rest of us. He needs to be emotional and angry, but that rarely happens. Scott is a rule follower, afraid of rebellion, well maybe not afraid, but not rebellious by nature. So, it becomes very upsetting and uprorious for him not to be able to have the rules suit him for a change. He follows the rules, so why can't the situation do so too. That is the hard part, he still is asking WHY ME? so the answer isn't comming right now. I can't answer that question either, but I have stopped asking, and moved on to HOW DO WE FIght This Hideous Thing?
My organization skills take over and I start scheduling and writing things down, putting it in black and white, in calendars in notebooks and taking all of the information in to make sure that we know what we are doing every minute of every day. To make sure that his appointments don't cross over one another, to make sure that he can get to the appointments, to write down what was done and how.
The stem cell doc said that he would contact us, and the oncologist here on Long Island, by Friday. We woild have a more definite plan of action by then. Aand so things roll on and on and on..............................................................................
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6 comments:
I so wish I could do something. So I will. I will pray for the entire family and for the quick progression of this treatment.
I'm pulling for you Miki, and your family.
You have so well described what's happening in your life as well as what you're feeling.
Oh Miki, I wish I could do something too. I have your family on my prayer list. Not much else we can do out here in blogland but pray.
I know it's got to be so hard for everyone. We just never know what will happen to us. Things happen that we can't possibly understand. Keep hanging in there!
Thanks for keeping us up to date. I'm praying the news on Friday will be good news!
I am keeping my fingers crossed that things will go smoothly!
Scheduling and writing appointments down is probably helping you stay sane. It must be so hard for you. My daughter is again going through that "Why me?" stage. I don't cry often, but I sure could kick something about now.
I hope that some peace finds you through this fog of despair. My thoughts are with you.
Thank you, again, and again, all.
Cliff: You are a great person, and I appreciate that you do pray for us, we are going to be fine!
Rachel: You are always, and I mean always there with a kind word and an encouragement, your prayers are appreciated as well.We are hanging tough!
Lynda: Our fingers are crossed too! You are so thoughtful to keep reading my stuff, when your situation was not that different, not so long ago. I feel for you and wish YOU all the best!
Peruby: I always want to kick something, I think the anger builds until the only outlet is crying, sometimes. Your daughter is going through such a rough time right now, but as everyone tells me with Scott, she will get through this. Know you are in my thougts and my "conversations" with GOD.
Oh Miki,
This is my first visit to your blog. What you're describing and what you and Scott are going through shot straight through to my heart for both of you. (I haven't blogged about it, but I'm intimately familiar with [too] much of what you have described here.)
I have no words of wisdom from that experience. I do send hugs and postive healing thoughts. The power of thought and prayers from others is a powerful collective force. Even if I can't stop by here often, please know that I think of you and Scott regulary with steadfast hope.
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