I'm always shocked when I get back from New York after my biopsies and everything is still Ok. Even though I have my bloodwork done monthly, it's always unnerving to have the biopsy. I think it's because of the number of times I've heard things like, "the marrow's just not right", or "the cells are ugly", or "seems like things have gone pear shaped". It's the exposure to that excellent bedside manner that some doctors just seem to have. They have no idea that what they say can just stick with you forever...
But now I remain lucky. Luck is a huge thing in life. Luck and Hope. Hope keeps your head in the right place, and Luck, well without it, you're F**ked.
Arpine came with me for the biopsy. It's always so nice to see Dr. Giralt in his pink V-neck sweater and blue bow tie. It didn't hurt that much this time. Arpine didnt watch. Kept her head down and sweated it out with me. Much better for her. It's gotta be pretty yucky to watch a giant needle go into someone you love. In fact, I still do wonder who this whole thing was harder for? Me or those who saw me through it all. Sometimes I think about (god forbid) if the roles were ever reversed, how horrible it would be. When you're a carer you have practically no control. For me, I could decided how hopeless or perseverent I wanted to be. No one could do that for me. They could just encourage and watch. And hope...
So amazingly, I have only 1% leukemic blasts in my marrow. Your average healthy Joe can have up to 5%! That's so fantastic. It's those superior Monique Aguirre cells. She's a magic super hero! I know it!
I do have some Graft vrs Host Disease. My skin and lungs and maybe my eyes. To Dr. Giralt, a chronic cough for six months is not OK. And skin rashes and burning itchy eyes, also not OK. They're much more ready to treat for these types of things in NY than they are in London. He said if you don't, I could end up in the hospital on oxygen, or worse. So, he's momentarily upped my medicines. This of course, bummed me out. Somehow I see it as medicine = failure. Not sure where I got that? Yoga? Like I think I should be able to have a green juice everyday and this will keep the doctor away. Fat chance. This is transplant land baby. He said I need to get used to going up and down on medicines my whole life. And so, I'm making peace with it.
I knew at one point I'd have to make peace with this. And honestly, I feel so much better on the increased medication that it hasn't been that hard to accept. I needed this turning point. The transplant still often seems like just a bad dream. A dream, not a reality. But now I'm feeling more and more like, yes, this happened. This happened to me and my family and my loved ones. I can own that. And luckily I can move forward too. It involved A LOT of medicine. A lot of really helpful medicine. And a lot of luck and love and always, hope.
I'd like to say thank you so much to anyone and everyone who took some time out of their days to read this blog. This journal of leukemia. Most of the time now, I forget about making entries. What was once a vital source of maintaining my sanity has become an old friend. If you ever know anyone who is going through something hard, (and we all have our sh*t don't we?), please pass this blog onto them. Because although it's gets hairy at times, it's a good ending. Maybe it could be helpful. I would love to think that this blog might help someone. Even in the smallest ways.
And the best thing I've learned: Love Heals and Enjoy Everyday Day.
All my love to you,
Dina
