Un-telling

I've always thought one very sad part of suffering a miscarriage is the terrible task of "untelling" everyone who had heard your good news.

On an infinitely smaller scale, I am also sad to have to "untell" what I thought was our good news last Friday! We are NOT going to be doing the transplant in May, as I had thought. It will now likely be pushed back to July.

The trouble is that this isn't just a normal bone marrow transplant, it is a clinical trial. There are a bunch of other tests and stuff in the protocol for the study that are not a part of a normal BMT protocol. I had been primarily working with the tranplant coordinator, who simply didn't have all the information about the study protocol. It's a long story, but the upshot is that I have to have a series of MRI's a minimum of three weeks BEFORE any of the other baseline tests can be done (bone marrow biopsy, lumbar puncture, etc.). And they haven't been able to schedule the MRI's because I guess Texas Children's Hospital (where I have to do the MRI's) is very busy.

So everything is pushed back three weeks after they are finally able to schedule the MRI. The problem is that this would put me in the hospital right during my sister's wedding on June 28 (and she had picked this date primarily because we all thought this was the date I could most likely be there! Aargh!).

When the nurse called me this morning (after I had called and left messages with 2 other people, wanting to know what my schedule was this week), she delivered this bad news. She couldn't really explain the reasoning behind this 3 week wait, but it is a part of the study protocol, and it is imperative to follow the protocol exactly. I sort of fell apart. Well, I really fell apart. I had a total overreaction to the situation. It's just a 3 week wait, and I always knew there was a good chance I wouldn't make it to the wedding. But I didn't realize how MUCH I was looking forward to being there, to having my whole family together for the first time in 2 years, and the last time in 2 more years, having my kids be able to play with their cousins, being in the Temple with my sister, all of it. I just couldn't handle the thought of half of my summer being taken up by this transplant. Missing the last few weeks of the boys' school, AND basically all their summer vacation (because I probably won't be good for much for a few weeks after I get home), AND the wedding was too much. Also, I think it's just really getting to me, having my fate in the hands of people who don't know me, being told one thing, and then finding out something else, being told we have insurance approval, only to have to wait 4 weeks before the clearance actually comes, just everything.

So after moping about for a few hours, I suddenly just thought, "Why don't I just wait till after the wedding?" I think it will be much better. This gives the nurses and coordinators a good 6 weeks to get their act together, coordinate with all the hospitals, and get my appointments set in stone before I have people (i.e. my mom) flying in on expensive last-minute tickets only to find that I'm not going to Houston after all. If I'm going to go through all of this, it may as well be on my own terms. And it seems better this way, to not have everything rushed and last-minute. So, that is the plan. Well, it is MY plan. Hopefully everyone will comply! :-)

I'll hopefully (I know I use this adverb way too much, and it's kind of a meaningless adverb at that, but oh well, hopefully you all understand what I mean!) have all the preliminary baseline tests done at the beginning of June, get started on the stem cell mobilization and get the collection done the week before the wedding, then go to the wedding, come back and go into the hospital the next Monday! Then I'll spend all of July in the hospital, and my boys can stay in La Canada with my mom for a couple of weeks, then go up to Utah and spend a couple of weeks with the Turner cousins, and come back to Austin when I go into the outpatient place so they can come visit me. I think this is a good plan.

The risk, obviously is that by delaying by another month or 5 weeks, I may have another relapse, and that would not be good. But I think I am willing to run that risk just to have more personal control over what is happening in my life.

In any case, I can not do a single thing until those MRI's are done, and they haven't even been able to schedule them yet.

I feel bad for my kids, I've been trying to gear them up to have me be gone, and now I'm not going to be gone yet, I've been telling all my family members that I need them to come out and stay to help with the boys, and now they all have to change their plans, and the whole thing is very frustrating.

But that's just the way things go. I understand I'm the first patient going through this here in Texas, and they're working out all the kinks. It's got to be really hard to coordinate everything between 3 different doctors and 3 different hospitals. So I'm trying to be understanding and anyway it does me no good to be angry. Frustration is a waste of energy so I'm trying to let that go, too.

I'm going to really try to enjoy the next couple of months. I won't have the anxiety of waiting for insurance approval and all that. Hopefully I'll have all the plans in place soon, and I can just relax and focus on my kids and keep myself healthy and enjoy life. I will be here for the end of school, I'll have a few weeks in June to go on some fun weekend trips with my family, and try to de-stress as much as possible. Plus, I'll have my hair for the wedding pictures!! Yay!! And, while I really don't think it will happen, I can't help wondering what if I end up in that 3-5% who don't survive the transplant? I want my boys to have their last memories of their mom to be really happy ones, not really stressed out ones, know what I mean? But don't worry, I'm not losing sleep over that possibility.

I've also learned not to count on ANYTHING until I get the automated email from MD Anderson with my appointments listed there in black and white.

It has been great to have my mom here the past couple of days. She got more done in 8 hours yesterday than I could have accomplished in 3 weeks, and that is probably an understatement. I'm going to keep her busy with some other projects I've been procrastinating so her trip out here wasn't a complete waste of time. Actually, I should just let her sleep, since she pretty much never ever gets a chance to relax, ever. I don't think she'd go for that, though.

Thank you everyone for your notes to me, and all the prayers and good thoughts coming my way. I know it is helping me maintain at least a semblance of equilibrium during all of this.