It's Sunday night. Let me start with - I feel pretty good! And this may be one of those knock-on-wood-she-spoke-to-soon-moments, but considering I’ve been back at UCLA every day this week getting chemo, I really can’t complain. I’m able to exercise a little each day, and I tire easily — but the main thing I’m struggling with is the new “central line” the surgeon put in,which is still pretty uncomfortable and awkwardly placed, just an inch above my breast. But in the big picture, I’m doing great.
The best news is that Clemmy is home from college for a week. Nothing better for a mama bear than her baby bear coming back. We went out for dinner last night which felt amazing. Doing anything “normal” really grounds me, although I still feel a bit like an imposter when I wear my wig. Something about it feels goofy, like I’m playing dress-up. Maybe I’m just more of a beanie gal? And it’s embarrassing to admit, but every now and then, I still get a little shocked when I see my reflection in the window. For a split second I think — who is that bald chick? Is this a joke? There's no way I have Leukemia. I recently spoke to another A.L.L. Philly patient (in remission!) who advised me not to say “I’ve got Leukemia” because it sounds permanent. Instead, she would always say, “the doctors have diagnosed me with Leukemia.” I like that. Makes good sense. I’m adopting it.
When we saw the doctor at one point last week, he took an unusually heartfelt moment to look Trey in the eyes and say, “This is harder on you than it is on Nancy.” And I think just shining a light on that, set something off in both of us. Trey was suddenly in touch with how sad and exhausted he is. And how powerless. Which made this week an especially hard one. But we are moving through it. I also found out that my best chance at remission is to have a bone marrow transplant. Both my brothers were tested, and unfortunately, neither is a match. That was a blow-- although there was only a 25% that they would match in the first place, so it’s not a complete shocker. Now we are looking into the world donor bank, so hold good thoughts that we can find a perfect match.
On a random side note, I’ve gone from taking 100 mg of Prednisone to zero. And for those of you who have never taken Prednisone before, know that it makes you feel like a superhero, jump starts your metabolism, raises your appetite, and lifts your mood to extraordinary heights. I didn’t realize that half the reason I’d felt invincible over the last month was because of the big P. So if you happen to notice a huge shift in my general disposition — not only do I apologize, but I blame the Prednisone. (That said, if you guys happen to have any sitting around your house — feel free to drop it in my mailbox!)
Until next time —
xo
Nancy
The best news is that Clemmy is home from college for a week. Nothing better for a mama bear than her baby bear coming back. We went out for dinner last night which felt amazing. Doing anything “normal” really grounds me, although I still feel a bit like an imposter when I wear my wig. Something about it feels goofy, like I’m playing dress-up. Maybe I’m just more of a beanie gal? And it’s embarrassing to admit, but every now and then, I still get a little shocked when I see my reflection in the window. For a split second I think — who is that bald chick? Is this a joke? There's no way I have Leukemia. I recently spoke to another A.L.L. Philly patient (in remission!) who advised me not to say “I’ve got Leukemia” because it sounds permanent. Instead, she would always say, “the doctors have diagnosed me with Leukemia.” I like that. Makes good sense. I’m adopting it.
When we saw the doctor at one point last week, he took an unusually heartfelt moment to look Trey in the eyes and say, “This is harder on you than it is on Nancy.” And I think just shining a light on that, set something off in both of us. Trey was suddenly in touch with how sad and exhausted he is. And how powerless. Which made this week an especially hard one. But we are moving through it. I also found out that my best chance at remission is to have a bone marrow transplant. Both my brothers were tested, and unfortunately, neither is a match. That was a blow-- although there was only a 25% that they would match in the first place, so it’s not a complete shocker. Now we are looking into the world donor bank, so hold good thoughts that we can find a perfect match.
On a random side note, I’ve gone from taking 100 mg of Prednisone to zero. And for those of you who have never taken Prednisone before, know that it makes you feel like a superhero, jump starts your metabolism, raises your appetite, and lifts your mood to extraordinary heights. I didn’t realize that half the reason I’d felt invincible over the last month was because of the big P. So if you happen to notice a huge shift in my general disposition — not only do I apologize, but I blame the Prednisone. (That said, if you guys happen to have any sitting around your house — feel free to drop it in my mailbox!)
Until next time —
xo
Nancy
We love you Nancy & Trey! What do we need to do to find out if Eric or I are a match?xo
ReplyDeleteI've asked the same. If you get an answer before me let me know and I'll do the same!
DeleteSo great to read this and get ur perspective...thx for sharing. U are amazingly strong & positive...an example for us all...xo
ReplyDeleteYou are a warrior, Nancy. And Trey is as well. Thank you for sharing and I'm sending you all much love and a lot of prayers. Xox
ReplyDeleteYou're so stink'n cute...hair, beanie...doesn't matter. How nice having big Clem home. Enjoy!!!
ReplyDeleteThanks all! The docs say my best chance of a match is in the donor bank, because even my own siblings only had a 25% chance. My kids have half of that. Apparently it's about fitting into my genetic typing (which is ashkenazi, european jewish DNA). But let me ask again. XOXO Nancy
ReplyDelete