It's a good thing when one doesn't have much to report about living with cancer.
A really good thing.
Life in captivity at UCSF has proven to be much better than at CPMC our previous hospital.
Staff are just as competent (as far as we non-cancer specialists can tell) but they are also more multi-dimensioned, more human. They share with us little bits about themselves and are willing to have real conversations that go beyond white blood cell chat and platelet babble.
Karen showed us her tattoos, Angie told us about her house in Hawaii and the incredible hibiscus she found, Ramella told us how she misses the East Coast summer evenings.
They also have one more level of care that was lacking at the previous hospital. In essence Tad's care was in the hand of a brilliant CEO who appeared for five minutes at the end of every day and pulled all the strings in his absence. He was prompt, business-like, cordial but not warm. During the day the only non-nursing person we saw were interns who seemed to be precocious 16 year olds who regularly replied "I don't know, I'll check with Dr Baron."
At UCSF we never see our CEO and we never see the interns but we have an "attending" physician who's a grown up, proper oncologist who visits twice a day and is in contact with said CEO. He too is a clearly a geek and it pains me to see what a hard time he has making eye contact while conversing with us but he's willing to sit, to talk, to answer tough questions. Once he even revealed a bit about himself and his family.
Just as frequently we see Nurse Practitioners who also know a lot about the medicine and can have the all-important power to prescribe. They are a funny lot but the recipe seems quite simple: picture a physician, take away all the narcissism and add a heart. Voila.
Another subtle difference but an important one is the way we are recognized as a couple. The previous hospital was by no means uncomfortable with us being gay but it was simply tolerated. Here staff purposefully support us, openly express care for us as a family, regularly inquire about us as a loving unit worthy of respect and, dare I say, celebration.
To add a cherry to the cake we know several people who work at UCSF so it's quite sweet to have old friends pop in and say hello, lie down on the beds with us and watch some TV or bring us yummy stuff from the cafe.
The next few days will be the hardest. Tad's immune system is slowly disappearing because of the chemo. The last, most aggressive LEJ was given to him on Tuesday. LEJ is Tad's name for it: Leukemia Eradication Juice (I came up with Leukemia Obliteration and Vivacity Enhancing Tonic ie L.O.V.E. Tonic but Tad thought that was way too touchy-feely). On that day a nurse had to be present all day in case his vitals plummeted from the toxicity of the Juice. For the first time we saw them bring in a bottle using ALL the precautions (mask, gown, double gloves!). The worst thing he experienced was a throbbing headache.
What is clear to us now is that when Tad arrived for Round One, unbenownst to us, his immune system was already shot through with leukemia. His whole experience of chemo was far more complicated by multiple symptoms, none of which has reared its ugly head this time around. He will no doubt hit the low point in about three days (this is called the Nadir which makes me smile and think of Ralph every time I hear it).
As I write this I wonder how much his physical state coupled with our emotional states might have had an effect on these professional relationships. Perhaps the first team, like us, was far more concerned about Tad's death and simply didn't want to get too personal. Today when people walk into his room they find the two of us mostly relaxed, openly loving, reading, writing, watching TV, giggling, usually only crying when cards and other expressions of love arrive. The specter of his death seems to have taken a step or two back and we're all breathing a little more freely for it.
Friday, June 25, 2010
Friday, June 18, 2010
Same-same but different
It’s been four days since Tad and I stepped back into a hospital again – this time for Round Two of three month-long chemo sessions.
Many things are familiar: a button to push when you need help, a functional box where no matter what you do the furniture never quite flows, people coming and going all day monitoring what goes in and out of his body, oh so sweet nursing staff and slightly geeky, brilliant medical staff.
But things are also quite different.
Yes we are in a new hospital with new rules (for instance they don’t want me to pee in his toilet for fear the toxins he’s urinating might splash up and get on my skin!). Yes the view is less fabulous (we look out on a massive eucalyptus - covered hill with only the top of Sutro Tower as a visual distraction). Yes the names and faces are all brand new (somehow their oncologists seem a bit more capable of empathy and relatedness).
But what is mostly different is us.
Unlike the first hospitalization which started with Tad quite sick from a sudden bout with pneumonia which luckily clued us in to the fact that his white blood cells were rapidly turning into Borgs, this time around Tad is beaming with health. Two days before being admitted we were working hard in the yard, he was cleaning the garage, schlepping the green trash cans, porting heavy bags of mulch, digging and planting new plants. He was eating well and actively preparing for the one month absence. After a few days of struggling with depression in the beginning he had had the realization that he needed to stay busy and connected during his time home. And it worked like a charm.
It is not til now that I see how much the pain from the pneumonia (and some minor surgery he’d had two days previously) had profoundly affected the way he experienced his first round of chemo. It also deeply impacted me since there seems to be a direct connection between his experiencing pain and my squirming like a school girl, wanting to accost the first medically-inclined person who goes by to make it all go away NOW!
The down side, as he pointed out yesterday, is that he has to go through chemo with his eyes wide open this time, none of that slightly dulling experience of major analgesics to keep a gentle veil between him and reality.
We’re also different in that we know what to expect this time unlike the first round when every cough or spike in fever appeared– in my fearful brain—like the announcement of the last days.
I suppose the most obvious way we are different –and words suddenly fail me -- is that somehow we are perhaps more present to daily life.
The gentle rhythm we had developed during our one-month break seems to have a lasting effect on our life today. We seem closer to our tears and our laughter comes more easily. We are more loving, more tactile, more peaceful. We seem to be grounded in our love in a palpable way.
Our squabbles are brief and almost warm – like when Tad insisted on stopping at Kohl’s to buy new pajama bottoms during our frantic drive from Santa Cruz while I was dead-set on trying to get to the hospital at the agreed-upon time I had painfully extracted from the charge nurse.
(For those who like to know how stories end: We only arrived a half hour late after rushing by my place and miraculously finding parking IN FRONT of the hospital. But by then I was so agitated that I managed to lash out at the young man in Admissions who grunted his greeting at us and then again at the nurse who put us in a room with a loud, angry, middle-aged man who wouldn’t turn down his BLARING gun show on TV and complained loudly because we wanted to turn on the light. Fortunately they kindly moved Tad to his own room.)
If all goes well Tad will be out of the hospital on Bastille Day – all ready for another month of R & R and a visit from my 13 year old godson from Bordeaux.
In the meantime please call Tad now and then (415-514-5413), skype him (thaddeus67) or send him a card (Tad Crandall, Rm 1404, UCSF, 505 Parnassus Box 0290, SF, CA, 94143-0290).
Despite Luke Wilson's promises and the extra thirty bucks a month we both pay for the super fast 3G network, we can’t receive a single call on our cellphones in the hospital.
Many things are familiar: a button to push when you need help, a functional box where no matter what you do the furniture never quite flows, people coming and going all day monitoring what goes in and out of his body, oh so sweet nursing staff and slightly geeky, brilliant medical staff.
But things are also quite different.
Yes we are in a new hospital with new rules (for instance they don’t want me to pee in his toilet for fear the toxins he’s urinating might splash up and get on my skin!). Yes the view is less fabulous (we look out on a massive eucalyptus - covered hill with only the top of Sutro Tower as a visual distraction). Yes the names and faces are all brand new (somehow their oncologists seem a bit more capable of empathy and relatedness).
But what is mostly different is us.
Unlike the first hospitalization which started with Tad quite sick from a sudden bout with pneumonia which luckily clued us in to the fact that his white blood cells were rapidly turning into Borgs, this time around Tad is beaming with health. Two days before being admitted we were working hard in the yard, he was cleaning the garage, schlepping the green trash cans, porting heavy bags of mulch, digging and planting new plants. He was eating well and actively preparing for the one month absence. After a few days of struggling with depression in the beginning he had had the realization that he needed to stay busy and connected during his time home. And it worked like a charm.
It is not til now that I see how much the pain from the pneumonia (and some minor surgery he’d had two days previously) had profoundly affected the way he experienced his first round of chemo. It also deeply impacted me since there seems to be a direct connection between his experiencing pain and my squirming like a school girl, wanting to accost the first medically-inclined person who goes by to make it all go away NOW!
The down side, as he pointed out yesterday, is that he has to go through chemo with his eyes wide open this time, none of that slightly dulling experience of major analgesics to keep a gentle veil between him and reality.
We’re also different in that we know what to expect this time unlike the first round when every cough or spike in fever appeared– in my fearful brain—like the announcement of the last days.
I suppose the most obvious way we are different –and words suddenly fail me -- is that somehow we are perhaps more present to daily life.
The gentle rhythm we had developed during our one-month break seems to have a lasting effect on our life today. We seem closer to our tears and our laughter comes more easily. We are more loving, more tactile, more peaceful. We seem to be grounded in our love in a palpable way.
Our squabbles are brief and almost warm – like when Tad insisted on stopping at Kohl’s to buy new pajama bottoms during our frantic drive from Santa Cruz while I was dead-set on trying to get to the hospital at the agreed-upon time I had painfully extracted from the charge nurse.
(For those who like to know how stories end: We only arrived a half hour late after rushing by my place and miraculously finding parking IN FRONT of the hospital. But by then I was so agitated that I managed to lash out at the young man in Admissions who grunted his greeting at us and then again at the nurse who put us in a room with a loud, angry, middle-aged man who wouldn’t turn down his BLARING gun show on TV and complained loudly because we wanted to turn on the light. Fortunately they kindly moved Tad to his own room.)
If all goes well Tad will be out of the hospital on Bastille Day – all ready for another month of R & R and a visit from my 13 year old godson from Bordeaux.
In the meantime please call Tad now and then (415-514-5413), skype him (thaddeus67) or send him a card (Tad Crandall, Rm 1404, UCSF, 505 Parnassus Box 0290, SF, CA, 94143-0290).
Despite Luke Wilson's promises and the extra thirty bucks a month we both pay for the super fast 3G network, we can’t receive a single call on our cellphones in the hospital.
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