Wednesday, December 31, 2008

You Asked and...

...your prayers were answered, the biopsy went very well this time. Dr. Schiller went so quickly with 1/3 the local numbing medication then I usually get which was painful, but it was finished in 5 minutes! I think the trick was going in at a sideways angle. If I ever have to have another one from Dr. Wolliver, I'll be sharing the trick in as polite a way as I can :)

The transplant manager spent a good deal of time with us explaining how things were going to go...ask Mike because it is a bit of a blur to me. As I recall, we will get word back on this biopsy soon and, based on the outcome, either be ordering the cord blood from Australia on Friday or going in for another treatment locally. So we're praying there is no more leukemia, as there wasn't 3 weeks ago when I had my other biopsy. You just never know what will show up in that time.

The cord blood coming from Australia takes 8-10 days to arrive, not because of postal delivery, but due to the stringent rules of the Australian governing agencies.

Originally I thought Mike would have to be there with me for the whole 6 weeks. Now we're hearing he only has to be there during the critical periods, 2 weeks in the middle and the 2 weeks at the end. That's good news for my kids' sake. We still need to hammer down some childcare for them during the time away.

Here's some good news for me...the doctor said that the side effects of the conditioning treatment, before receiving the stem cells, are the same as what you'd expect with the first round of chemo I received in September/October, and I have done very well with that (aside from the bumps in the road if you remember that far back). I will be receiving total-body radiation and super-high doses of chemotherapy this time and thought it must be worse feeling. He says no. Also the risks of the radiation causing breast cancer in 10 years is so much less than the risk of having leukemia recur without having the radiation.

So the most serious threat is graft vs. host disease. That is something that could show up within the first 3 months post-treatment. It's where the new cells that have been transplanted grow in you, but start attacking your own tissues as a foreign invader. Reminds me of lupus, and it's similar in how that feels, but much more dangerous. So be praying for me through that as the time comes. The ideal situation, we are told, is to have a little bit of graft vs. host disease, just a little, so that if there are any rogue leukemic cells the new immune system will attack and kill them, but then for the graft vs. host disease to go away. This would be the best situation and it is known to happen. Severity of GVH varies from mild skin rashes, achy joints and fatigue to death should it attack a vital organ. There is no predicting what will happen, except that they try to prevent it with immune suppressing drugs which is why I won't be able to be around groups of people for quite a few months.

I am asked all the time what the survival rate of patients with leukemia who get transplants. It sounds bad, but he told me 40% have long-term leukemia-free remissions. He said that was the average, but that I have a very favorable case and expect the best outcome. As far as the potential to have other cancers from the radiation, that is a possibility, but we have to cure the leukemia because the rate of survival for someone with untreated leukemia is 0% and would only live 6 months tops. I'm not trying to scare you, just letting you know why I have to get this thing done. Some of us just need to know the why...I'm one of them. Why am I doing this again? :)

On a happy note, I got a tour of the floor of the hospital I'll be staying at, including visiting an empty room and seeing all the gadgets they have. It'll be like I'm on a vacation with room service where you just call the kitchen and order what you'd like, WHEN you'd like it. That's quite different than filling out a menu, sending it with the nurse's aide, receiving your meals at a set time (usually not when you're hungry), and finding an entirely different meal than you ordered because someone submitted a different menu that they filled out for you (a real pet peeve of mine). The room is organized so neatly, the bed seemed nice with a thick mattress, the t.v. is a sweet flat screen, there is a nice little living room for visitors and I even have a bathtub (they won't let you take showers because of the potential for organisms in the piping to get airborne and cause lung infections. They have these super hepa filters in the ceiling and the place smells fresh to me, not like a hospital at all. They have a fairly decent cafeteria downstairs too. Parking is $11 to park in the structure below the hospital.

It's New Year's Eve today. What better way to ring in the new year with old friends and lots of laughs...HAPPY NEW YEAR!

1 comment:

Darlee said...

This transplant is going to work!!!! You are amazing. God has blessed you so richly Krista. It was so fun New Year's Eve and today shopping. I love that you're in my life...again.