So Ari did get to go Night Swimming. While Andy took some beautiful pictures. I'm so glad Ari has this appreciation for the delicious things in life. I played him the REM song "Night Swimming" tonight and he liked it a lot. He's got a lot of zest and is very charming. And then earlier today one of the nurses told Isaac she wanted him to be her boyfriend! He was very gracious and smiled and played along. Yikes! Growing up!
Tuesday is Ari's 6th birthday. Is that little or big? It's little of course, as far as parent calculating goes. But, six among kids, is no baby anymore. These kid are entering the world. My kids are individuals backed by a mommy and a daddy that never really felt this kind of love before. I would never take credit for the greatness of my kids. But I will, for now, take credit for not messing them up. It's actually so fun to primarily just let them be who they are... They are blessings. Every inch of their existence is a blessing. My blessings. As Dr. Giralt said, "They are your fuel". He's right. They absolutly are.
I am 99.9% sure I'm getting out of here tomorrow. My Absolute Neutraphil count tonight is 0.4. You need .5 to legitimately leave. I think I can negotiate that. Andy says I would have been a good investment banker. Haha. If I could only successfully balance a check book! But I can strike a pretty good deal when I need to. Maybe that's from watching him do it for so many years. He's a win/win guy and I love that about the way he does business. He's juggling so much now. With balance and grace. It's impressive.
The doctors and nurses here are very focused on my numbers and tests all looking fantastic. They are the people who prepare patients for transplants and unless you're strong, they won't let you do it. Presently my numbers and labs are good. I appreciate this body, despite the whacked-out bone marrow, because at least she's strong. Really strong. I can't describe how grateful I feel when my liver counts were so high from so many medications and as they took me off or switched me to different ones, my liver responded. My bilirubin counts came down and are normal now. I know it seems weird to sit here and be writing about how grateful I am to my liver, but I am.
I want to go and be with my boys so badly. Not here. Not in a hospital. It's starting to get me down. A whole hospital filled with cancer patients. My God what a tragedy. It's sad. All ages, races, some fit, some fat. There's no reasons. There are so many websites saying do this, do that, so you don't get cancer. I guess, yeah, of course, don't smoke a pack a day, but beyond that, it just seems random who gets it and who doesn't. I have a roomate again and she just seems to be in pain, taking a lot of morphine, and it's just so sad. I haven't even been able to bring myself to ask her about her illness. I know she's a mom and has five sisters. The rest, I just can't ask anyone anymore.
It's an arduous disease. The diagnosis scares the hell out of you. The treatment really taxes your body. The fears tax your mind. I know we all like to be strong and think we're tough. But for cancer, you have to be stronger than that still. I look at my body, and my skin is so dry, even wth gobs of lotion. I live on antibiotics. And I'm sure my hair will come out again, so that's always a mental and fashion challenge. And I get exercise here by walking the halls. Fourteen times around is one mile, by the way.
I emailed Marty today and said all I want to do is cuddle with my kids and lie on a blanket in the shade. His answer, "Have a bit more patience and you'll be rewarded in the end". So I found a tiny bit more patience in my soul and enjoyed the guys this evening. We ordered Italian. Ari wants to know who the boss is here. So he can talk to them about the whole kid visiting problem. Maybe he can get that cleared up once and for all.
I'm stressing that they're leaving next saturday. I don't know how I'll be. From then it's about two weeks to transplant and then four weeks in the hospital. That will be at least six weeks without seeing Ari. That's a long time. For him and for me. Isaac wants to come for the transplant. Maybe he'll come on his own and be with me. He is so brave and mature and supportive. Just a really nice person. I'm proud of those boys and really impressed how Andy is being super Dad right now. He invited Ari to go night swimming tonight. But my hunch is that Ari fell asleep in the car.
Not only did Ari do very well sneaking in, so many nurses came by to meet the kids and get a glimpse of my little clandestine packages. For me, just being with them is pure bliss. I so appreciate folks helping me break the rules a bit here. They took me off isolation today, which means no more private room. But I can walk the halls and go up to the Solarium, which I did with Isaac. I couldn't wait to get outside and breathe some of that fabulous New York City air. It really was nice.
I'm so on the edge of being able to leave. My white blood cell counts are starting to return. But slowly. I can feel that familiar "I'm hitting my wall" feeling where if I spend one more minute here I'll freak out. But they're good negotiators here, almost as good as me, and the Nurse Practitioner made me pinky swear today that I wouldn't just leave without discussing it with her. I didn't want to pinky swear but somehow she got me to do it. But anyway, in my mind, Monday is my absolute cut-off date.
And there is transplant news. I spoke with Dr. Giralt yesterday. He and Marty both agree I should recover more fully before moving on to transplant. Dr. Giralt said that if you go into transplant with any damaged organ tissue you're setting yourself up for Graft vrs. Host Disease and that's just as bad as Leukemia. Marty said my organs are looking very good. So he gave me an admission date of September 7th and then the date the cells go in will be September 13th. They both feel very optimistic and I'm just going to go with that because, well, why the hell not?
So the guys landed, and they're here in NY and I'm so excited. And then I started feeling really badly. Sort of guilt, sort of shame, sort of sadness, but not purely any of those. I guess I'm just so disappointed that this is happening in the middle of my life and that we're all so exposed to it and effected by it.
My family is bending itself out of shape for me. They landed at 10:00am. That's 5:00 in the morning for them. They're asleep now at Tracy and Larry's and that's good. Tomorrow they'll come see mommy and I'm in this yucky hospital. Yuck. And I know anyone would say, "They don't care. They just want to see you". But of course they care. When I was little I hated hospitals. They freaked me out. What kid wants to go to a hospital? It's scary and not fun.
It seems the entire nursing staff is set on helping me sneak Ari in tomorrow. There's supposed to be no kids under 11 on the floor. But I'm still in my own room and very close to the elevators. So a "sneak-in" should be pretty do-able. I'm hoping for no glitches!
How many days has it been? Thank you to my Aunt Dee and Jen S. and Arpine for schlogging through this with me. How am I doing this? Andy and the kids are flying back to New York tomorrow. They've just gotten over their jetlag and here they come again. Poor guys. It will be three weeks to the day since I've seen them.
I've been back in a room by myself because, well, first I tested positive for a cold, and then well, came the cold. It's important I don't get anyone else on the floor sick. And when they pulled my room mate out at 5:00am a few days ago, I knew the lab results had returned and I was Germ-Girl again. So out the roomate went. But I've heard that she did not get the cold AND she got a private room. So, that's cool
Since here, I have had every part of me xrayed, MRIed, CAT-Scanned, EKGed, poked, listened to, blown up with water and evaluated. Head, brain, mouth, sinuses, chest, lungs, heart, abdomen, arms, legs, feet. The saline they pumped into me when I spiked the fevers, stayed in me. And until yesterday, I had 25 extra pounds of water weight on me. It was unbelievable. I was a Michelin Man/Woman. Today I can actually see that I have a human shape and that I was actually once pretty cute looking.
So, they are keeping me here, I guess, mainly because I have absolutley no white blood cells to fight infection. Well, that's not true, I have 0.1. And I'm proud of it. But it seems the more chemo you do, the longer it will take your bone marrow to return after treatment. I imagine come Saturday or Sunday I'll start losing my inner calm and will start making garbled and tearful cases for why I have to get out of here. Case number one being that my family will be here and I want to be with them every second. But there's a part of me that's hesitant to do anything that's not 100% Doctor Stamped for Approval. This moment in my life is way too important.
I hear rumblings of folks talking about my transplant. I think that the donor being unavailable for two weeks is inconvenient to the doctors. I imagine that my most ready moment might be sometime within those two weeks and the decision is, do they rush things, or do they delay things? Do the little ailments I have now (a cough, a sore in my mouth) preclude rushing things? All good questions that will of course get answered sooner than later. Marty came to visit today. He's always got the nicest things to say. Today was, "You never asked for this disease and our hope is to eradicate it for you forever". Major Mensch as always.
I feel in a way like I'm just coming up for air. So much happens during chemo. And at the same time, nothing happens. I get a few hours of good energy and I'm like, "I'm cool. I'm outta here", then blop, "Where's the bed?!"
Dee being here kept me in stitches. She's funny, gorgeous, smart, kind and completely my friend and my idol. She raised four fabulous kids, has 9 amazing grandchildren, cared for my uncle so lovingly till he passed. She's a Life Embracer.
Jen S. spent every second of this gorgeous weekend with me in this hospital. She brings healthy yummy food, an orchid, backrubs, and she let me cry my eyes out at the end of Across the Universe. It's such a beautiful Beatles opera movie. For sure in my top ten favorite movies. The last song is All You Need Love, sung with such heartfelt dedication to every word. I have an All You Need is Love button on the lapel of my down jacket (down jacket in London, you ask? Oh for sure...). I truely believe it is all you need. (Love, of course, not the button. Or down jackets. Unless you really like those things).
I had this cough that sort of came out of nowhere so they swabbed my nose and took a chest x-ray. No pneumonia. Phew. And so I didn't think about it again. Until the doctor came in.
"I've got something to tell you. You've got the virus that carries... the Common Cold...".
I was so relieved I almost laughed.
I don't mean to underplay the seriousness of the cold when you're on a Leukemia floor where no one has a immune system to speak of. So now I'm in isolation and I can't leave the room! They wear gowns when they come in to see me. People can visit me, but I can't go walk my hallway circles or anything. And no roommate... I'm the girl in the plastic bubble, but don't have John Travolta's hair.
Plans Are Good. But they don't always happen. It's no big deal. And as I've said before, plans that don't happen are a hell of a lot better than no plans at all. Planning is human. Planning is alive. I don't care how Buddhist you are. Plans are fun, and the idea of future, although it's an illusion, is part of what makes us human.
Small example: the meal gifts my friends in London have been giving my family ever since I relapsed. Because they're human, my friends want to help. So they planned a calendar that quickly got filled up with loving meals we got to eat on days when stress and exhaustion made cooking seem like an impossibility. Plus, they got to help! Which is what we do! When someone is down, we want to help. And I love that about humans! And you can't do that without planning! Planning is useful, appreciated, fun, and wise. So, as much as I believe that, of course, life is what's lived while in the moment, it can all happen simultaneously while making plans to help out, have fun, rest, work hard, play. All of it.
And speaking of plans, I was supposed to leave the hospital two days ago. I was going to have some nice days away before I might be feeling sick from the chemotherapy. It was all planned. Fun times were to be spent with Arpine, Jennifer, Tracy... Movie matinees, resting in the shade, yummy food.
But as I was realizing I hardly had it in me to pack my stuff up, I knew something was going on. If you can't pack your shit to leave the hospital, you probably shouldn't leave the hospital. Then I started getting a little fever and a pain inside my cheek and then etc., etc... I needed to stay and get this all checked out. Which was a good thing I did. They are hell bent on keeping me well during this round of chemo so that NOTHING could preclude my moving onto transplant. And I totally get that and it's totally fine with me.
So this little infection caused a bit of pain, so they put me on Morphine (Weird drug. It's the, "I'm in pain but I'm too zonked out to tell you about it--nite nite drug). And on top of it, my blood counts have been dropping (as they should) and I've been needing transfusions. And as we know, these they pretreat with Benedryl. It kind of goes like this, "Good morning! You're counts are low. Here's your Benedryl. Nite Nite!" So that's where I've been. Sleeping. Nurses come in an say, "I came in to check on this, or give you that, but you were OUT COLD!" And since then, they've upgraded me to Dilauded. This is less of a One Flew Over the Cuckoos Nest knock out pain killer and I feel MUCH more communicative. In fact, Arpine and I took some nice twirls around the halls this afternoon.
So, to cover this infection, I'm on, two anti-biotics, one anti-viral, one anti-fungal, one pain killer. They've CAT-Scanned and scoped every inch of my face and sinuses. All while wrapping me in warm blankets, telling me I'm a trooper and working around my rigourous FaceTime schedule.
All this said, I still do plan on gettin' out for a few days if I can. All this time is precious time. In, out, wherever.
And just a side note, if anyone is worrying about my kids, here's their schedule-- Tomorrow: Men's Weightlifting. Sunday to the beach in Swanage. Next week, camp and tennis camp. Next weekend, men's final 200 yd dash (Usain Bolt maybe!). A trip to Edinburgh to the Fringe Festival. Then something Equestrian (doubtfully Ann Romeny's dressage horse) in Greenich, England. Finally, the Closing Ceremonies, a trip to Guernsy and then a trip to New York to see MOMMY! Phew! That oughta pass the time. How's that for planning?
