I had a doctors check up on Monday. Aside from my fungal pheumonia, optical annurisn, and UTI, everything looks pretty good! My new bone marrow is making awesome white blood cells, and slowely my platelts are coming up. The only thing it's not making is red blood cells and hemeglobin. They said it could take months before it really kicks into gear. So the plan is that next week they will do a chimarism test that will show if I'm 100% donor or if some of me is still there, because if some of me is still there, the leukimia is still there. If it's not 100% then they will quickly take me off my immune suppression drugs in hopes that if turned loose my new white cells will go and kill everything! We should know the results in about 2 weeks. Sure, I have nothing to do but worry for 2 weeks. No problem!
The doctor also told me to go home and try to start getting back into normal life, so long as I'm careful to sanitize everything I touch and I get my butt back to Hunstman at the first signs of an infection. So terrified, I left my safety bubble. Since the first of May I have been banished to one room where nurses and doctors come in and out all day long to alter medications, or give me something good if I needed to calm down :) And now, that's been replaced with dirty loveable little boys, going to the store, the park, everywhere normal people go, right? What I don't think the doctor understands is that it will never be normal again. My family will never have that peace of mind that tomorrow we will all still be here. Mom can't do much more than lay on the couch and snuggle (which is wonderful) We don't have a house of our own, or any income to speak of. Everywhere I go I am the bald girl with the mask on....totally normal, right? This bomb shell of Leukemia hit right when we were planning the best time of our lives. We had been poor students for 9 years and finally my husband graduated with his Pharm D. We were supposed to buy a house in a good neigborhood with good schools. We were supposed to have another baby. We were supposed to be a happy normal family. Not one bit of our current life reflects that plan. Marc promises me that someday we will get it. Someday. Until then I am just happy to be able to lie on my couch with my family around me and try not to think of tomorrow.
Dear Jan, as I read this post I felt the fear as well as the hope and strength. It took me back in time when my little family discovered that life does end and it is fragile and unknown. I know my situation was very different. But I do remember the feeling of coming home from the hospital and the fear of being on my own, away from the safety net of the hospital. It was really hard and scary. And my life wasn't on the line. But I battled the fear of knowing that at any minute things could change and someone I loved could die if God wanted them back. It is a hard journey. It was also hard to be responsible for my son again. Often times I would literally forget that I was suposed to be watching him, because other people had cared for him for so long. The transition is tough. But it comes back in time. And as for the "laying on the couch" thing, we understand that struggle very well here. I will never say I know exactly how you feel, because I don't. But I just wanted you to know that you are not completely alone in your fears and concerns. They are valid and some will go away quickly, and some you will learn to calm and cover with hope. Sometimes Hope is all that can replace fear. We love you ! Keep Keepin' On! ((HUGS!!))
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