I realize that the tone of my account of the past few days differs quite a lot from that of my parents', but this fact just shows once again that we all experience the world differently. It also clearly demonstrates the fact that I am on drugs.
Considering the intensity of the surgery I just went through, I would say that the past few days have gone stunningly well. While it did take too long to find the right combination and dosage of painkillers so that I could be comfortable, ANY time at all would have been too long: pain just sucks for everyone involved, there's no way to gloss over it. In some ways it might be worse for the caregivers than the patient, when the patient doesn't feel any guilt for not being able to make it better, and when he often doesn't remember most of the pain anyway.
Same with the Fever of Unknown Origin. It definitely sucks to be soaking through pillowcase after pillowcase, but while they have to watch me moan, I get to have some pretty amazing hallucinations and other extra-ordinary experiences. For instance, I recently had the pleasure of serving as a medium via whom the spirits of some close family friends communed with their respective recently-deceased relatives. Now folks, all I am saying here is that's what it felt like when I woke up, but nonetheless, it was a pretty interesting experience that I'll bet made my afternoon quite different from everyone else's.
Personally, I think that it's the previously-diagnosed minor pneumonia that is causing the fevers, and that the antibiotics that I am already on will shortly eliminate this worry. In the meantime, my body is bouncing back amazingly well from an incredibly extensive surgery, especially considering that I just lost my spleen, which while not strictly necessary, would under normal circumstances be participating in the current fight with this minor pneumonia, a not-uncommon post-surgical outcome. I am in negligible pain with the help of a relatively small dose of long-acting MSContin, with no need so far to take the available fast-acting painkiller. I walked about a mile and a half today, absolutely smoking the competition, if I do say so myself. My cough has disappeared, I am up to 2750ml on the Inspirometer, am enjoying normal food, had a real bowel movement, and spent the day alert and chatting with old friends.
Today was an amazingly good day. Tomorrow will be even better!
Thursday, June 25, 2009
Wednesday, June 17, 2009
Up to the minute info
For updates on how I'm doing while I am hospitalized, please see:
LiliensteinFamilyBlog.blogspot.com
Live starting in a few hours!
As I walk with my family through the New York morning on my way to the hospital, I thank you all for your well wishes and love. They are already being put to good use.
(man, am I HUNGRY!)
LiliensteinFamilyBlog.blogspot.com
Live starting in a few hours!
As I walk with my family through the New York morning on my way to the hospital, I thank you all for your well wishes and love. They are already being put to good use.
(man, am I HUNGRY!)
Tuesday, June 16, 2009
Optimism
I am in New York a few days before my surgery at Memorial Sloan Kettering. This is it! A shot at being done with this saga once and for all. It will be a massive surgery, requiring the very best liver, gyn/onc, and urological surgeons, which is why I am here in New York. As always, I am planning on the best possible outcome, and stand ready to roll with whatever punches may fall.
I write from an apartment with an oblique view of the East River, listening to the sounds of the city wafting through the open windows on a soft breeze. In between various doctors appointments, I have been thoroughly enjoying New York City with family and old friends. After a truly incredible meal last night at Marea, an amazing seafood restaurant on Central Park South, today I am on a clear liquid diet. This entry is being written under time pressure, because my “bowel prep” is about to kick in. It’s going to be an eventful evening in the bathroom!
A couple of weeks ago I completed by 6th and last round of chemotherapy in LA, and drove up to my parents’ place in Palo Alto to finish recovering amidst a flurry of friends and monumental meals. My mom and I then drove up to Lake Tahoe for a week of quiet, fresh air, kayaking, hiking, and sailing. As I have been celebrating the end of chemotherapy, I also have been preparing myself for the next phase, which will be very different. For me, chemo is less intimidating than surgery, because submitting to a few days of discomfort every other week is less threatening than imagining all of the possible scary outcomes of a major surgery. In some ways, though, chemotherapy has helped me prepare for what is to come.
The damage done to my hearing by wave after wave of platinum-containing drugs has already permanently altered my body and my life, and having had to come to terms with that reality has given me practice at accepting what I cannot change. I know that recovery from tomorrow’s surgery will be slow and difficult, and there is a chance that my life will have to be lived very differently after the surgery.
The days following chemotherapy were uncomfortable, despite fancy drugs, attendant and generous family and friends, and abundant resources. But as with anything, it was not a purely negative experience. I have learned that every single moment, we are each presented with a choice of what in our environment or in our minds to focus on. My hands may have been made of ice-cold needles, but the need to have them warmed led to my rediscovery of how much I love café mochas (note: Green & Black’s cocoa is the way to go). I have been unable to study, but I had time to help my tomatoes fight the good fight against their inchworm assailants. An entire day of nauseous hiccups was spent watching the sheer curtains dance in the breeze. The foul taste in my mouth was clearly linked to my hilariously yellow tongue. Immobile hours were spent under amazingly soft sheets. I became dependent on my parents as no 29 year old non-Italian male expects to be, and in the process have had an otherwise inconceivable opportunity to enjoy their company in the prime of their lives. I have said goodbye to many former classmates as they move on with their careers, but I have had the time to reconnect with many old friends.
Earlier in my life, I felt plagued by opportunity. It was painful to accept that making any choice necessitates giving up on all of the other choices. I recently realized that the equation is balanced: each setback also creates new opportunities.
I write from an apartment with an oblique view of the East River, listening to the sounds of the city wafting through the open windows on a soft breeze. In between various doctors appointments, I have been thoroughly enjoying New York City with family and old friends. After a truly incredible meal last night at Marea, an amazing seafood restaurant on Central Park South, today I am on a clear liquid diet. This entry is being written under time pressure, because my “bowel prep” is about to kick in. It’s going to be an eventful evening in the bathroom!
A couple of weeks ago I completed by 6th and last round of chemotherapy in LA, and drove up to my parents’ place in Palo Alto to finish recovering amidst a flurry of friends and monumental meals. My mom and I then drove up to Lake Tahoe for a week of quiet, fresh air, kayaking, hiking, and sailing. As I have been celebrating the end of chemotherapy, I also have been preparing myself for the next phase, which will be very different. For me, chemo is less intimidating than surgery, because submitting to a few days of discomfort every other week is less threatening than imagining all of the possible scary outcomes of a major surgery. In some ways, though, chemotherapy has helped me prepare for what is to come.
The damage done to my hearing by wave after wave of platinum-containing drugs has already permanently altered my body and my life, and having had to come to terms with that reality has given me practice at accepting what I cannot change. I know that recovery from tomorrow’s surgery will be slow and difficult, and there is a chance that my life will have to be lived very differently after the surgery.
The days following chemotherapy were uncomfortable, despite fancy drugs, attendant and generous family and friends, and abundant resources. But as with anything, it was not a purely negative experience. I have learned that every single moment, we are each presented with a choice of what in our environment or in our minds to focus on. My hands may have been made of ice-cold needles, but the need to have them warmed led to my rediscovery of how much I love café mochas (note: Green & Black’s cocoa is the way to go). I have been unable to study, but I had time to help my tomatoes fight the good fight against their inchworm assailants. An entire day of nauseous hiccups was spent watching the sheer curtains dance in the breeze. The foul taste in my mouth was clearly linked to my hilariously yellow tongue. Immobile hours were spent under amazingly soft sheets. I became dependent on my parents as no 29 year old non-Italian male expects to be, and in the process have had an otherwise inconceivable opportunity to enjoy their company in the prime of their lives. I have said goodbye to many former classmates as they move on with their careers, but I have had the time to reconnect with many old friends.
Earlier in my life, I felt plagued by opportunity. It was painful to accept that making any choice necessitates giving up on all of the other choices. I recently realized that the equation is balanced: each setback also creates new opportunities.
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