Well I'm still here at Sloan. I've watched Sandy wreck it's havoc on NY and NJ. Places I know. It will take some time to recover. Those are some wet wet subways. And my heart is so sad for anyone who lost their precious life during this. Mostly from downed trees. Seems so unnecessary. Random. Everyone I know and love here seems to be fine thank goodness. Even Sue B. sitting in the dark with her elderly mom on long island. Commitment really shows in these situations. To your family, your friends, your town. Small things are appreciated, like finding some extra birthday candles in a drawer, or open dunkin donuts. And I was appreciating that the girls from Bay Shore they were interviewing on CNN seemed really intelligent and cared for. We used to take the ferry from Bay Shore to a Fire Island summer house share we had in the '90's and Bay Shore seemed so forgotten: bridal stores with dresses from the 70's in the windows next to empty stores all around. I imagine Fire Island took a big hit from Sandy. I love the beach so much and I so dislike when they get pummeled.
I think the healthiest lifestyle I ever lived was two years in Florida. Biking, jogging, kayaking with the dolphin and manatee and getting up before sunrise to do sea turtle conservation. It felt like the first time I actually lived on a planet. And I fit right in...
Well, this week has been a real Sloan week. I'm not saying I fit right in but they've taken good care of me. It seems since I came in with chest pain, they don't want me to leave until they've figured out why. So they want to put a scope down my throat into my belly and see what's up. But I need to have another echocardiogram first because last time they did this my heart went racing. So I had to sign the "what if" scary papers. I hate those. Just in case yuck yuck bleh bleh. I asked Dr. Giralt if he thought this was worth it and he said definitely. So OK. And then tomorrow I think maybe is the bone marrow biopsy. If the labs are open. I'm praying for a beautiful marrow. The doctors seem to be most excited about my platelets doing so well. And well heck, so am I. So, I know so many of you have prayed and continue to pray for me and my family, please I ask if you have a moment for a healthy biopsy prayer we will take it in with much love and appreciation. Lots of tests to pass, but that by sure is the most important one.
Love you
Dina
Tuesday 30 October 2012
Monday 29 October 2012
Fierce
Up and down. Leslie and I had the nicest day on Saturday. Taking a cab to central park and walking among the beautiful changing leaves. A treasured hour-long walk. Finding Mallards, autumn light, my legs. Being physically weak is shocking to me every day. And the recovery seems roller coaster-y, not progressive. Yesterday, in fact, I felt so sick with what was just heartburn but I was completely convinced I was having a crushing heart attack. We came to the Urgent Care at Sloan. No heart attack. But we all decided I should stay over for observation and I think it was a relief for all that I'd be here at Sloan during hurricane Sandy and not at Hope Lodge with Leslie being worried and my anxiety out the roof. It's so hard to be vulnerable. All I can remember saying to Leslie is "do we have enough water?". Over and over.
Hope Lodge: I've only been there two nights. It's very hard to make any comments. A bit dorm, a bit hotel (kinda) and a bit sad. That's only becuase seeing people with cancer makes me sad. I can't help it. It just does. It's a sucky scary thing and I hate it. Hope lodge seems to do a great job with events and different spaces to hang out in. I'm not sure I can stay the whole time there. You need to have a companion with you every night and it's such a tall order for all my friends here. Andy is looking into alternatives for me.
I never could've banked on how hard post-transplant would be. On every level. I did see people at Hope Lodge , post-transplant, that looked like they felt just as crappy as I do. I'm not sure I find that sort of thing reassuring. Just makes me feel sad for everybody, and all their families and friends.
But on the good note, I did not have a heart attack! And my blood counts look good. And Dr. Giralt has rescheduled my bone marrow biopsy for Wednesday.
I've lost track of what day this is. Need to get back to my calendar!
Right now I'm looking out the window as Sandy slowly creeps in. I wish everyone safety tonight as nature reminds us of her fierceness. Fierce. It's something we all need to be at times.
Hope Lodge: I've only been there two nights. It's very hard to make any comments. A bit dorm, a bit hotel (kinda) and a bit sad. That's only becuase seeing people with cancer makes me sad. I can't help it. It just does. It's a sucky scary thing and I hate it. Hope lodge seems to do a great job with events and different spaces to hang out in. I'm not sure I can stay the whole time there. You need to have a companion with you every night and it's such a tall order for all my friends here. Andy is looking into alternatives for me.
I never could've banked on how hard post-transplant would be. On every level. I did see people at Hope Lodge , post-transplant, that looked like they felt just as crappy as I do. I'm not sure I find that sort of thing reassuring. Just makes me feel sad for everybody, and all their families and friends.
But on the good note, I did not have a heart attack! And my blood counts look good. And Dr. Giralt has rescheduled my bone marrow biopsy for Wednesday.
I've lost track of what day this is. Need to get back to my calendar!
Right now I'm looking out the window as Sandy slowly creeps in. I wish everyone safety tonight as nature reminds us of her fierceness. Fierce. It's something we all need to be at times.
Friday 26 October 2012
Negative thinking
Negative thinking.
I'm going back a few days because this has just been on my mind despite all the transitions this week and computer roadblocks to blogging. I know I've mentioned how hard prednisone has been on me emotionally. I cry really easily and get sucked back into the shock of the transplant experience really easily. I'll miss my kids and cry a river. Often people will advise to stay away from negative thinking. Which always gets me thinking.... Just about our brains, and how each of us is wired and how darn difficult it can be sometimes to think positively. And I noticed, being here in the states during this frustrating campaign season, that negative thinking must fill a huge hole somewhere in our humanoid-ness. Why would a candidate pay gigantic money for an ad that simply lists their opponents' faults and missteps and at the end simply say they approve the message. That means that a list of negativity is just as powerful and efficient advertising as providing people with positive things you may have accomplished as a candidate yourself. If it didn't work they wouldn't do it. People must thrive somehow on the negative. It's serving us. Is it just natural? Should we just admit we're drawn to that like rubbernecking or something? I see it in myself. I'm like rubbernecking my own transplant. Like "what the f### was that?" and I want to turn around and drive by again, slower, to see if I can see some more or figure out what happened.
I'd like to remove negative thinking from my brain as much as I wish there would be campaign finance reform. But it's hardest to do when the drama is high and the stakes are high. But I think I'm ready to accept today that my mind is a rubbernecker, and the good positive pleasant uplifting thoughts have to be airlifted in by a SWAT team. Phew. What are friends and family for? Because I just can't seem to run a clean campaign here by myself.
I'm going back a few days because this has just been on my mind despite all the transitions this week and computer roadblocks to blogging. I know I've mentioned how hard prednisone has been on me emotionally. I cry really easily and get sucked back into the shock of the transplant experience really easily. I'll miss my kids and cry a river. Often people will advise to stay away from negative thinking. Which always gets me thinking.... Just about our brains, and how each of us is wired and how darn difficult it can be sometimes to think positively. And I noticed, being here in the states during this frustrating campaign season, that negative thinking must fill a huge hole somewhere in our humanoid-ness. Why would a candidate pay gigantic money for an ad that simply lists their opponents' faults and missteps and at the end simply say they approve the message. That means that a list of negativity is just as powerful and efficient advertising as providing people with positive things you may have accomplished as a candidate yourself. If it didn't work they wouldn't do it. People must thrive somehow on the negative. It's serving us. Is it just natural? Should we just admit we're drawn to that like rubbernecking or something? I see it in myself. I'm like rubbernecking my own transplant. Like "what the f### was that?" and I want to turn around and drive by again, slower, to see if I can see some more or figure out what happened.
I'd like to remove negative thinking from my brain as much as I wish there would be campaign finance reform. But it's hardest to do when the drama is high and the stakes are high. But I think I'm ready to accept today that my mind is a rubbernecker, and the good positive pleasant uplifting thoughts have to be airlifted in by a SWAT team. Phew. What are friends and family for? Because I just can't seem to run a clean campaign here by myself.
Wednesday 24 October 2012
Tricked into Sleep
Kaethe arrived on Monday from Colorado. My best friend from 6th grade, and counting. I blubbered (as my Aunt Dee calls it) for a while at the front door. But since then my blubbering has become a little less constant. Easier for everybody I am sure. The doctor also pulled me down a peg off the Prednisone and I am sure that is helping. But I still hadn't slept at all by Monday night and I was all worked up about it in my mind. It was like I had forgotten how to do it and was afraid of every sleep-aid staring at me from the bedside table. The doctor said to try taking double the Ambien. That had me double freaked out. Would it double not work? Would I be awake all week? And then Tracy and Kaethe take over. It's bedtime, they're in my room with me telling funny stories about people who sleep, people who don't, maybe we should import some medical marijuana from Colorado... and then all of a sudden Tracy's got those 2 Ambien in her hand and hands them to me, says, "take them", and I did. And I slept. And again last night too. Those tricky girls. But, talk about the difference between night and day. Corny.
Today is a bit of a big day. I go for a bone marrow biopsy this morning. Not only are they painful, more importantly, they show the whole deal of how your bone marrow is growing. So they're a bit nerve-wracking. My blood counts since the transplant have been very good. The doctor seems really pleased. And it's all I can do to just steep myself in her words and not let my wandering mind go off anywhere it has no business being (which is its favorite pastime...)
So tonight is my last night at Tracy and Larry's beautiful home till I move over to Hope Lodge tomorrow. I can not thank Tracy and Larry more for embracing me so hard. There's a whole lot of love here. And just being able to sit outside, walk in nature, breathe real air. I think I've become a bit of a nature girl. Especially when it comes to healing. And I have to say I'm a little nervous to go live in the city for two months. I'm curious about Hope Lodge, and I know the proximity to the hospital is huge. But to me right now I'm kinda wishin' Hope Lodge was on top of a mountain in California overlooking the water where I can just sleep on warm mossy rocks.
Today is Day +33: Plan the next 4 girls trip.
The 4 girls are Kaethe, Allison, Susanne and me. I written about them many times here. Somehow we were anointed with the title, 4 Girls, I don't know when. High School probably. They have always been my foundation. Unchanging even as we've changed and moved through our lives. We've taken some fun trips together. But way too few. And my complete healing from this transplant will definitely be celebrated with a trip for us. For three years they have been next to me every step of the way. I think of the tears, and exhaustion and laughs, and I can easily start blubbering again. For me, just to PLAN something is such a gift. It brings a sense of peace to me I can't describe.
Today is a bit of a big day. I go for a bone marrow biopsy this morning. Not only are they painful, more importantly, they show the whole deal of how your bone marrow is growing. So they're a bit nerve-wracking. My blood counts since the transplant have been very good. The doctor seems really pleased. And it's all I can do to just steep myself in her words and not let my wandering mind go off anywhere it has no business being (which is its favorite pastime...)
So tonight is my last night at Tracy and Larry's beautiful home till I move over to Hope Lodge tomorrow. I can not thank Tracy and Larry more for embracing me so hard. There's a whole lot of love here. And just being able to sit outside, walk in nature, breathe real air. I think I've become a bit of a nature girl. Especially when it comes to healing. And I have to say I'm a little nervous to go live in the city for two months. I'm curious about Hope Lodge, and I know the proximity to the hospital is huge. But to me right now I'm kinda wishin' Hope Lodge was on top of a mountain in California overlooking the water where I can just sleep on warm mossy rocks.
Today is Day +33: Plan the next 4 girls trip.
The 4 girls are Kaethe, Allison, Susanne and me. I written about them many times here. Somehow we were anointed with the title, 4 Girls, I don't know when. High School probably. They have always been my foundation. Unchanging even as we've changed and moved through our lives. We've taken some fun trips together. But way too few. And my complete healing from this transplant will definitely be celebrated with a trip for us. For three years they have been next to me every step of the way. I think of the tears, and exhaustion and laughs, and I can easily start blubbering again. For me, just to PLAN something is such a gift. It brings a sense of peace to me I can't describe.
Sunday 21 October 2012
Tired and Wired
Rest. It's something you would think I could be potentially very good at. First certified yoga training in 1985. That's a long time to study, practice, or at least be aware of the concept of rest. Relaxation. Breathing. And if it was you I bet I could talk you down into a blissful deep relaxation ASAP. But for me-- what a rig amoral! To get myself to sleep. Haven't been able to do it. But I have great expectations for tonight (expectations, those should help...)
I"m going to take an Aveeno bath and maybe NOT take an Ambian. I think I'm the only person in the world Ambian has a reverse effect on. Is that even possible? Maybe I just forgot how to sleep at night? But I stayed up all day today and I'm hoping to start leaning more toward normal everyday. To have faith that my strength will return. To have faith that I will in due time be very capable of taking are of myself and my family again. To have faith in body, mind and soul and live in that place as often as I can. And it pops up again--to be gentle with myself. It's been a lifelong challenge. Gentle with myself. Gentle with myself. Gentle with myself. I need a blackboard and some chalk so I can write it 100 times. But that's not even funny! That's not being gentle with myself at all! Yeah! I could punish myself into being gentle!
Ok. Must breath. I bid you all a restful, beautiful night.
Day +30-- REACH FOR THE STARS (sounds a lot like yoga to me...)
I"m going to take an Aveeno bath and maybe NOT take an Ambian. I think I'm the only person in the world Ambian has a reverse effect on. Is that even possible? Maybe I just forgot how to sleep at night? But I stayed up all day today and I'm hoping to start leaning more toward normal everyday. To have faith that my strength will return. To have faith that I will in due time be very capable of taking are of myself and my family again. To have faith in body, mind and soul and live in that place as often as I can. And it pops up again--to be gentle with myself. It's been a lifelong challenge. Gentle with myself. Gentle with myself. Gentle with myself. I need a blackboard and some chalk so I can write it 100 times. But that's not even funny! That's not being gentle with myself at all! Yeah! I could punish myself into being gentle!
Ok. Must breath. I bid you all a restful, beautiful night.
Day +30-- REACH FOR THE STARS (sounds a lot like yoga to me...)
Saturday 20 October 2012
I'm Officially Post-Transplant
Dr. Giralt discharged me today. It was the biggest relief I've felt in such a long time, I immediately fell asleep, detached from my IV pole, flat out on my belly. I could not move. Emotion, exhaustion, disbelief, belief. Waited all day for the final discharge and left with a giant bag filled with drugs. I mean GIANT. Tracy dragged me out of there and Jennifer organized all those medicines and I just couldn't stop eating. I had a little bit of everything: barley soup, tiny burger with ketchup, honeydew, avocado, a piece of a rye bagel with cream cheese, 3 small pieces of cheddar, a peanut butter and jam sandwich, and some chocolate that still doesn't taste right. I'm still waiting for water and chocolate to come back to themselves-- they're still off in wildly wrong taste-bud land.
It really struck me how long I'd been in the hospital today when I got out of Tracy's car at her house and went to climb her front steps. I literally felt like I was on Jupiter. The gravitational pull was completely unfamiliar. I could hardly understand my legs or get up those steps. It was shocking. But as I'm confident my taste for chocolate will return, so will my ability to get up the stairs with grace.
I will now continue this journey, taking care of my new baby self. Never would this have happened without the extreme devotion and care of my family and friends. How would I have been able to laugh my way through the ICU (at least that's how I remember it...). I'm just going to rest, laugh, enjoy, and heal. That really corny expression: Today's the First Day of the Rest of Your Life... Hmmm, well that actually applies...
Day +29 : YOUR BOYS ARE LUCKY
It really struck me how long I'd been in the hospital today when I got out of Tracy's car at her house and went to climb her front steps. I literally felt like I was on Jupiter. The gravitational pull was completely unfamiliar. I could hardly understand my legs or get up those steps. It was shocking. But as I'm confident my taste for chocolate will return, so will my ability to get up the stairs with grace.
I will now continue this journey, taking care of my new baby self. Never would this have happened without the extreme devotion and care of my family and friends. How would I have been able to laugh my way through the ICU (at least that's how I remember it...). I'm just going to rest, laugh, enjoy, and heal. That really corny expression: Today's the First Day of the Rest of Your Life... Hmmm, well that actually applies...
Day +29 : YOUR BOYS ARE LUCKY
Friday 19 October 2012
Let's Dance
Today the calendar says, "Dance in Place". It's very practical advice. Especially if you don't know if the doctor is going to say yes or going to say no to discharging me tomorrow. It's up to Dr. Giralt. He's the man on duty tomorrow. It is a matter of whether he's comfortable with having found my correct Tacrillimus dosage for my mouth.
I had some good advice from friend emails today reminding me to take deep breaths. Clear my mind a bit... And that i actually a lot like "Dancing in Place".
I also took Attavan a few times, which for sure slows the music down....
Remember "Dancing in Place"? At Middle School dances? Maybe on a lucky Friday evening some boy would ask you to dance a slow dance (most likely Stairway to Heaven---whoa that's a long song...) and there'd be no communication between you other than that you could put your head on his shoulder if you dared. There was such a mixed comfort of: Who's watching?
What's his face like?
Are his eyes closed?
Do I even like this person?
When will this song ever be over?
Hmm, this is actually really pleasant...
Stairway to Heaven is so long that if you don't eventually stop roaming in circles, you'd both fall over together. And you can't have that! So, "In place" became the place to be. It's really like a rocking. And rocking is so comforting. We do it to our babies all the time...
I asked if I could be unhooked from my "pole" today and the nurse said yes! So you can be sure I am sleeping on my belly tonight. All the baby things for me today... And just think, I can walk through these halls and let both arms swing! I think I may have forgotten how to do that!
Day +28 Dance in Place
I had some good advice from friend emails today reminding me to take deep breaths. Clear my mind a bit... And that i actually a lot like "Dancing in Place".
I also took Attavan a few times, which for sure slows the music down....
Remember "Dancing in Place"? At Middle School dances? Maybe on a lucky Friday evening some boy would ask you to dance a slow dance (most likely Stairway to Heaven---whoa that's a long song...) and there'd be no communication between you other than that you could put your head on his shoulder if you dared. There was such a mixed comfort of: Who's watching?
What's his face like?
Are his eyes closed?
Do I even like this person?
When will this song ever be over?
Hmm, this is actually really pleasant...
Stairway to Heaven is so long that if you don't eventually stop roaming in circles, you'd both fall over together. And you can't have that! So, "In place" became the place to be. It's really like a rocking. And rocking is so comforting. We do it to our babies all the time...
I asked if I could be unhooked from my "pole" today and the nurse said yes! So you can be sure I am sleeping on my belly tonight. All the baby things for me today... And just think, I can walk through these halls and let both arms swing! I think I may have forgotten how to do that!
Day +28 Dance in Place
Thursday 18 October 2012
I Love the Way My Friend Lana Pronounces "Tired". She says TIYID! I'm Sooo TIYID!
I wouldn't want to do anything RASH, but this one's really got me down. So itchy and red and uncomfortable (my favorite Grandpa Louis word, after he had eaten too much). So much so that I would accept anything they had to offer here, all day. So that's why I'm Tiyid! Lots of Attavan today. It aint for me for anviety. It just knocks me out. But I get the attraction. Peacefulness certainly ain't something I can easily conger up. And that's because it's NOT easy, or else we wouldn't be tripping over self-help sections in bookstores and yoga studios on every corner!
They're trying to figure out if the rash is a medicine allergy or a possible form of GVHD. This is where my mind goes blaaaaaaank and I ring the nurses' bell for more drugs.
"You raaaanng?"
"Yes Lurch, please bring me my happy doses of Attavan and Ambien!"
"Grrrrrrr". Always his response....
I was reminded last night of the last section of the New Testament where God wants Jesus to go to the cross and Jesus is bargaining with God, like, "Really? Please! Isn't there something else I could do? Something a little less horrible? "
But there wasn't and he had to do it. And that was so we could lay our burdens down. Hand them over and say, God, thank you for taking this one, because otherwise I'm not sure I'd know how to get through the day. It's probably where the expression "LORD, Give me strength!!!" came from. (Another great phrase I adopted from Lana).
It never feels like a fair deal for God. We're always handing over our yuck. For example, "God, please heal this gross itchy rash for me, so I can sleep like a baby tonight..." Does that seems fair...?
I think this is tied to why I feel so compelled, or just plain excited, to pay it forward. I'm curious to see how I can take all that's been given me so I can snowball it in some great way. But that "way" will, of course, reveal itself at the right time. Because right now I'm still just shy of the healthy side. Still daydreaming about walks, yoga, real sleep and real food. And besides, I'm really quite TIYID!
Day +27: EAT WELL
happy dreams Lurch,
Dina
They're trying to figure out if the rash is a medicine allergy or a possible form of GVHD. This is where my mind goes blaaaaaaank and I ring the nurses' bell for more drugs.
"You raaaanng?"
"Yes Lurch, please bring me my happy doses of Attavan and Ambien!"
"Grrrrrrr". Always his response....
I was reminded last night of the last section of the New Testament where God wants Jesus to go to the cross and Jesus is bargaining with God, like, "Really? Please! Isn't there something else I could do? Something a little less horrible? "
But there wasn't and he had to do it. And that was so we could lay our burdens down. Hand them over and say, God, thank you for taking this one, because otherwise I'm not sure I'd know how to get through the day. It's probably where the expression "LORD, Give me strength!!!" came from. (Another great phrase I adopted from Lana).
It never feels like a fair deal for God. We're always handing over our yuck. For example, "God, please heal this gross itchy rash for me, so I can sleep like a baby tonight..." Does that seems fair...?
I think this is tied to why I feel so compelled, or just plain excited, to pay it forward. I'm curious to see how I can take all that's been given me so I can snowball it in some great way. But that "way" will, of course, reveal itself at the right time. Because right now I'm still just shy of the healthy side. Still daydreaming about walks, yoga, real sleep and real food. And besides, I'm really quite TIYID!
Day +27: EAT WELL
happy dreams Lurch,
Dina
Wednesday 17 October 2012
Bad Day? Am I Still Allowed to Have Those?
So when I saw the doctor this morning she was like, "you're doing so great! you're amazing! We're so happy! You're doing SO well that we can't discharge you till Saturday!" They're spending these days getting me on to all medicines by mouth and this very important anti-rejection drug, Tacrolimus, dosage is measured by it's effect on your liver. So each day they give you a dose and check how it's taxed the liver. Can't be too much or too little. My liver keeps healing more and more everyday and so they can't catch the right number for me. So I get to stay an extra day...
And then there's the crazy yellow paint medicine that has my face and neck in a rash that itches and burns. It's had me in tears all day. If you read the literature on it, this is a side effect, but it's not on the severe list. Plus, it's a medicine that prevents a deadly pnemonia. So as much wimpering as I do, I'm not going to get out of taking it.
And then, more people today than ever have said things to me like, "Wow, I've been reading about you, you've had a really hard run". Or "Wow, you got through one of the hardest protocol we offer here at Sloan Kettering. You had a tough time, but you did it!" Apparently my liver was filling with fluid and my heart was racing out of my chest and it cut supply to my brain and made me severely delusional. That was part of what bought me a week in the ICU. "Luckily those things return", said the informer of that news.
In a way it was good to hear about some of the things that happened because I feel the effects of having gone through something really hard without knowing if that's true or not. Potentially a little crazy making. Maybe a little delayed stress? Maybe just wigged-out and worn down by a rashy face. You see, the thing is that, yes I had a miraculous transplant, and so it makes me feel less entitled to any negative emoitions about it. It's kind of horrible. Any time I have a complaining thought there's part of me, and other people too, that says, "Yeah but, you just got a do-over! You're so lucky! don't complain!"
I feel like I got to go surfing in the hardest but most beautiful waters in the world, and got hit by a wave that knocked my ass back on the sand, sitting facing the ocean, thinking, "What is that?" And feeling bumped and bruised up and someone walks by and says, "Yeah man, but you just surfed the Great Kahuna Wuna!" Like if I'm not in this super grateful stupor at every moment than I've really missed the point of this...
I've never really been a naturally optimistic person. I'm more of a worrier and on the timid side of life. I'm semi-adventurous. Not out of choice. Just nature. Fear? I don't know. And I think part of me was hoping that the transplant would take away that fear and make me just a natural go-getter. I work really hard on trying not to pass this thinking onto my kids and I'm doing well at that, but when it comes to me, it doesn't feel at all like that "change-a-brain surgury" I thought I was coming here for. It feels like me, Dina, post-transplant. Dina struggling with having a bad day. Kind of making the whole thing worse, no?
I feel like there's some reconciliation that needs to be made. I've been fighting so hard for three years for my life. It can feel really discouraging when your own body, or life, works against you. But I don't have that anymore. And I base that on the pure glee on the doctor's face today. I do know that right now is crucial for me still and I got freaked-out, almost mad, today when I heard someone sneeze. Germs scare me. Having to be super-duper strong scares me. Having a compromised immune system scares me. And I don't just naturally think, "don't worry. everything will fine..." I want to. I really do. Boy, am I having a bad day...
Tuesday 16 October 2012
Healing and Recovery
It's 2:00 in the morning here in NY. I can't sleep for nothing and I am sooooo starving all the time!!!
Friends have started bringing me food I keep in the fridge and I'm now the Queen of the 1:00am snack!
The word on the ward here is that they are trying to discharge me either friday or saturday! THIS friday or Saturday. They are working hard to get me on medicine by mouth only and are tweeking all the important dosages. The thought of it is what is keeping me sane. It's this IV pole that follows me around everywhere, although of course friend, can feel a bit as though it's over stayed it's welcome. I yearn for freedom. I yearn to see who and how I am with my new cells, walking in the woods, feeling sunshine, reading a book outside.
I've been thinking about my lovely donor today all day. I hope she had a great day. Her cells inside me feel so correct. And in my mind they've been shape shifting away. For the past week there's been this monolith feeling in me. Like a universal, untouchable paragon of strength. Today this image shifted into a really large crystal. Natural, clear, and unearthed to do powerful work. And sometimes what's in me feels like these adorable baby cells, crying, laughing, eating their toes. This is when I really feel like I have to take care of myself. Big time. I'm like a baby. I still think out of a hospital is better than in a hospital for a baby. Way fewer grems. But, like most grown ups, I don't tend to baby myself. This will be a really interesting path. Healing & Recovery. And all without guilt. I think that's the part I'm up against that's hardest. I think the only good path for me will be through love. Friends and family reminding me to slow down, that it's good to sleep in the day, this is my job... Love is so much more effective than anything punitive, isn't it? Even on old mommies whose immune systems have been reborn...
Friends have started bringing me food I keep in the fridge and I'm now the Queen of the 1:00am snack!
The word on the ward here is that they are trying to discharge me either friday or saturday! THIS friday or Saturday. They are working hard to get me on medicine by mouth only and are tweeking all the important dosages. The thought of it is what is keeping me sane. It's this IV pole that follows me around everywhere, although of course friend, can feel a bit as though it's over stayed it's welcome. I yearn for freedom. I yearn to see who and how I am with my new cells, walking in the woods, feeling sunshine, reading a book outside.
I've been thinking about my lovely donor today all day. I hope she had a great day. Her cells inside me feel so correct. And in my mind they've been shape shifting away. For the past week there's been this monolith feeling in me. Like a universal, untouchable paragon of strength. Today this image shifted into a really large crystal. Natural, clear, and unearthed to do powerful work. And sometimes what's in me feels like these adorable baby cells, crying, laughing, eating their toes. This is when I really feel like I have to take care of myself. Big time. I'm like a baby. I still think out of a hospital is better than in a hospital for a baby. Way fewer grems. But, like most grown ups, I don't tend to baby myself. This will be a really interesting path. Healing & Recovery. And all without guilt. I think that's the part I'm up against that's hardest. I think the only good path for me will be through love. Friends and family reminding me to slow down, that it's good to sleep in the day, this is my job... Love is so much more effective than anything punitive, isn't it? Even on old mommies whose immune systems have been reborn...
Saturday 13 October 2012
COPING--- Friday October 12, 2010
People coping is such a fascinating subject isn't it? What we do to get through. I was so proud of Isaac today because he knew he had a few hours where he'd be alone and sad after school, so he saw ahead and planned himself a playdate. My relief!!! My kid knows how to self soothe in this really planned mature way! The other day he sent me an email that made me and the Prednedsone spin off into the hugest late-nite cry-cry session in a long time. It was about his sadness. And he was able to express it. I won't print it, but I'll print my response:
"My love, I'm so sorry, I feel like I lost being in good touch with you last week. I had my transplant and it was harder than I thought it would be. But ultimately it did go well and I feel I'm getting better now and they're hoping to move me out of the ICU tonight.
I want you to know how much I love you. I know you know, but no one ever expects love to hurt or ever be painful, but oddly enough it is sometimes. It's NFF. (Not f---ing Fair).
Please know you are never alone in this. Even though I'm in NY, I love you the same way as everyday. And dont forget that that is MAMA LOVE and that ain't no joke!
And thank you sweetheart because You're so brave and supportive even when I bet you just feel like screaming some days! You're visits here have been so special, fun, cuddly. You're amazing. I'm so blessed Isaac.
I will be home as SOON as they say Yes. Please always call/FaceTime/write and don't stop till you get me. Sometimes I could be asleep but that's me just healing up and being a bit tired from the transplant.
Don't Forget, I'm always always yours,
Mama Friend. "
It might have been much, but for some coping reason I needed to spread it thick. I wanted to. Everyword the truth...
I know I still had anxiety about the whole transplant. It was helpful when the doctor said " You killed the tiger! Now don't be afraid of it's skin!" He was right.
So, I think I went to ICU somewhere around day 12 and they let me out yesterday Day 20. I know Andy came and went. It was so hard to have him go. I don't even think he saw me at my worst, but as I got better, I could see the imploring in his eys. I am doing this for the future of our family and he believes in that and knows it so firmly. It gave me an extra kick in the hospital gown I needed that day.
My hunch is that part of the reason they finally let me out was because I stopped shaking nurses and instead would copiously thank them for taking care of me. And I was begining to tell all the doctors how sure I was that their mothers were proud of them...the was for sure my usual M.O. My usual way of coping...
Here are the The Sweet Sayings so far from the Count Up Calandar of 100 days. Maybe it should be called the Coping Calandar of 100 Days...
September 30, Day+9: Cherish This Morning
October 1, Day +10: Elbows With Butter and Salt
October 2, Day +11: Rock On
October 3, Day +12: Power House
October 4, Day +13: Breezes on the Water
October 5, Day +14: Laugh Today
October 6, Day +15: Smooch
October 7, Day +16: :-)
October 8, Day +17: Love Yourself
October 9, Day +18: Love Conquers All
October 10, Day +19: Count Your Lucky Stars
October 11, Day +20: BELIEVE
October 12, Day +21: Puppy Breath
October 13, Day +22: You Have 2 Birthdays Now
October 14, Day +23: Call Your Friends
October 15, Day +24: Laugh at Yourself
October 16, Day +25: Breathe
October 17, Day +26: Have Faith in Yourself
The Lost Days of the ICU
It"ll be interesting to write this hearsay. I remember sooooo little. I rememeber some serious muscle pain and pushing the pain pump a lot. I remember that what seemed so real after I started hallucinatiting apparaently was not. I remember a nurse being mean when I kept taking off my oxygen thing and my telling her that the nostrels part hurt me and that she could be a lot nicer. And then I think it got low and dirty, to the point where I apparently shook her by the collar. Nut's. And then things got weirder and I thought she was living in the hospital with her mother and she said she was part of a food contest, that had something to do with rainbow fish and doctors as judges and that I had ruined her chances for winning. And then I screamed at her about how ridicuous it was to involve cancer patients in food contests...!
I think the next thing I knew, I was in the ICU having hit the pain pump one time too many. Apparently I was suffering with some breathing issues, pain issues, liver issues and heart regulation issues. It all happened fast and I think I thoroughly freaked out my friends and family. But, vless them all, despite their being freaked out, I remember it was an inccessant party in the ICU. I think people know I like it that way. "Ok! Strapped down to 12 medications nd a bed? Let's laugh a whole lot and have a party!!!" I realised in the ICU how laughing is so important to me; how important it is that my friends and family get my silly, and occassionally quite witty jokes...
Back to hallucinations. Mine seem so darn real!!! Duh... don't they all? Mine started out on the dramatic side. Important mythical figures. Visits fromK ing Kong, Ghandhi, MY grandfther, my father and and large spirit dog. . And appearance from my doctors's brother in Australia who, in my world, does amazing native aboriginol healing dances. Sounds all very Jungian no?
And then they got really commonplace and acceptable: tiny bugs that just hung around, lots of puppies and kittens. Tiny new born things. And this was while my body was crazily sucking in beautiful new stem cells. It was like this never ending milkshake. And as well, there was the black button at the front of the room that fogged the glass when you pushed it. And that is when the little boys would come out, all Ari's age, those skinny six yr old arms. They'd take these long lingering Pina Bausch steps cross the room, stop and pose, and then contunue on. To me, they felt normal hanging around. Alll the visitors, real and temporary made the room really crowded. And it was exactly what I think my brain knew I needed to get through the transplant days.
I think the next thing I knew, I was in the ICU having hit the pain pump one time too many. Apparently I was suffering with some breathing issues, pain issues, liver issues and heart regulation issues. It all happened fast and I think I thoroughly freaked out my friends and family. But, vless them all, despite their being freaked out, I remember it was an inccessant party in the ICU. I think people know I like it that way. "Ok! Strapped down to 12 medications nd a bed? Let's laugh a whole lot and have a party!!!" I realised in the ICU how laughing is so important to me; how important it is that my friends and family get my silly, and occassionally quite witty jokes...
Back to hallucinations. Mine seem so darn real!!! Duh... don't they all? Mine started out on the dramatic side. Important mythical figures. Visits fromK ing Kong, Ghandhi, MY grandfther, my father and and large spirit dog. . And appearance from my doctors's brother in Australia who, in my world, does amazing native aboriginol healing dances. Sounds all very Jungian no?
And then they got really commonplace and acceptable: tiny bugs that just hung around, lots of puppies and kittens. Tiny new born things. And this was while my body was crazily sucking in beautiful new stem cells. It was like this never ending milkshake. And as well, there was the black button at the front of the room that fogged the glass when you pushed it. And that is when the little boys would come out, all Ari's age, those skinny six yr old arms. They'd take these long lingering Pina Bausch steps cross the room, stop and pose, and then contunue on. To me, they felt normal hanging around. Alll the visitors, real and temporary made the room really crowded. And it was exactly what I think my brain knew I needed to get through the transplant days.
Thursday 11 October 2012
Day+8 september 29, 2012
This is funny. So as I've reconnected to so many of my fantastic friends from College, the tried and true New Yorkers here, it's really lucky, because I never would have remembered an ounce of my transplant. The reason I do remember is because my friend Darcy TOOK NOTES!!! It's something she was always so good at!! And she did it, for me! Did she know I'd never remember this on my own? Well I thank her because honestly I remember so little. I remember people saying to me before hand, " Oh you won't remember anything. This will all be a blip on the screen". Part of me likes that idea, but part of me abhors it!" All this work and a blip???!
I could feel (as the more pain killer I used), the more my own private little experience transplant was going to become. But I wanted to continue sharing it too. No doubt it helps me. Anyway, on this day of Sept 29 there was a lot of talk about the auspiciousness of the date of the transplant, 9/21/12. Just think how many potential dates there were and the one I ended up with. Shabbat/Tshuva. It's the same date that Isaac's BarMitzvah will be next year. It's between two jewish holidays. I know I've written about this before but I loved the way Darcy put it in her notes. It's not just a day of repentance, but one of new beginnings, opportunity and reconciliation. How gorgeous is that?
It helps me to answer the confusing and painful question I've been holding close for the last year: "Why, three years ago, when I was trying to make the excruciating decision whether to do the chemo or do the transplant, was my intuition telling me to: "Do The Chemo, it will save your life" and then I relapsed a year later..? I'm such a strong believer in intuition. I believe that's where God sits, I believe it's a beautiful place you can always go to listen. I believe Intuiution is always you're best bet...And in this case, it wasnt even just intuition. This was many moments so of meditation, this was the agonizing involvement of my dearest friends and husband who cried with me everyday, read the pertinient papers and tried to explain them, stayed up late at night on the phone and made sure I was never ever alone in this, not one minute. And the answer came to me today. "These were the right cells". Is that crazy? I don't know. But I engrafted so quickly; like I got surrounded in a spinning love. It was so quick that the doctors at MSK needed to pull back on the medicine that helps engraftement.
I take nothing for granted. I just am wondering. I'm getting to see a little bit of the truth of the "When" of my transplant. Something I've been wondering about for so long...
Count Up Calendar: Go With The Flow
I could feel (as the more pain killer I used), the more my own private little experience transplant was going to become. But I wanted to continue sharing it too. No doubt it helps me. Anyway, on this day of Sept 29 there was a lot of talk about the auspiciousness of the date of the transplant, 9/21/12. Just think how many potential dates there were and the one I ended up with. Shabbat/Tshuva. It's the same date that Isaac's BarMitzvah will be next year. It's between two jewish holidays. I know I've written about this before but I loved the way Darcy put it in her notes. It's not just a day of repentance, but one of new beginnings, opportunity and reconciliation. How gorgeous is that?
It helps me to answer the confusing and painful question I've been holding close for the last year: "Why, three years ago, when I was trying to make the excruciating decision whether to do the chemo or do the transplant, was my intuition telling me to: "Do The Chemo, it will save your life" and then I relapsed a year later..? I'm such a strong believer in intuition. I believe that's where God sits, I believe it's a beautiful place you can always go to listen. I believe Intuiution is always you're best bet...And in this case, it wasnt even just intuition. This was many moments so of meditation, this was the agonizing involvement of my dearest friends and husband who cried with me everyday, read the pertinient papers and tried to explain them, stayed up late at night on the phone and made sure I was never ever alone in this, not one minute. And the answer came to me today. "These were the right cells". Is that crazy? I don't know. But I engrafted so quickly; like I got surrounded in a spinning love. It was so quick that the doctors at MSK needed to pull back on the medicine that helps engraftement.
I take nothing for granted. I just am wondering. I'm getting to see a little bit of the truth of the "When" of my transplant. Something I've been wondering about for so long...
Count Up Calendar: Go With The Flow
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