It seems, when one has cancer, there is actually something really positive about medical staff coming and going all day long, poking and prodding, checking and verifying this or that.
We both thought that having Tad comfortably back in his home would be the healthiest possible thing for him.
But sitting at home, with post-chemo fatigue and knowing in a couple weeks it will be back to chemo hell again, makes it hard to really engage in life fully.
It seems easier for me than for Tad. I can whip up a daily list of things to do in a heart beat. I can keep my nose on my list and fill my days so that by evening I feel a sense of accomplishment. Clearly right now that's tough for him. The usual pleasures of gardening, going to movies, shopping and doodling on the computer have lost their appeal. And seeing him like this feeds my own fears that somehow it will hasten his death.
Curiously this is the opposite of our dynamic at the hospital where I tend to be the one feeling glum, goal-less and prone to fear while he - in the thick of the action - seems to be more upbeat, even on the most hellish diarrhea/fever/shakes/chemo days.
He will be back in the hospital in about two weeks. This time it will be at UCSF where we have already met the new oncologist, Dr Thomas Martin.
He laid out the plan for the next stages of treatment:
- One month in the hospital for a second round of chemo starting mid-June,
- Most of July at home for rest,
- Most of August in the hospital again for a third round of chemo plus a bone marrow transfusion - which may have to be done in LA,
- Most of September at home.
He was cautious to offer us statistics, possibility of survival, etc but he did hold some hope. He was cordial, purposeful, and visibly quite popular.
In the waiting room, unlike at the previous more posh hospital, we were able to meet with other people with leukemia. Because UCSF is THE leukemia center in the Bay Area people come from all over to get care there. Next to us was a 23 year old guy from Modesto. His mom explained he'd just finished recuperating from a bone marrow transfusion. He looked great.
This new oncologist explained the "remission" we've been so excited about has basically just got us to about one third of our goal. His job is to take us the other two thirds of the trip. He also explained that the original genetic information we'd received about this particular form of leukemia was incomplete. Further studies have shown that in fact Tad's cancer falls in the most difficult to cure camp of the three types.
Needless to say - we came home from this first encounter with a new doc feeling both hopeful and yet quite beleaguered and weepy.
Tad asked that I spend more time with him in Santa Cruz where I am enjoying the warm days (81 compared to 67 in SF) and doting on the vegetable garden which various friends lovingly kept on track during the last round of chemo. Since I am focused on preparing for the boards i.e. studying - it's easy for me to do.
The good news is we have to time to prepare for the next rounds. If you are willing to help out by being on a team of people who take care of Tad's cat, garden and house (and sometimes his husband) during the hospital stints please let me know. We hope to get a group of folks organized in SC who can share the burden.
Saturday, May 29, 2010
Sunday, May 23, 2010
normalcy...or almost
Wednesday afternoon I joined Tad in Santa Cruz where he had finally arrived forty-eight hours earlier thanks to the loving Carl who agreed to fetch him in San Francisco and drive him home (during rush hour!!).
I had been looking forward to being there when Tad was finally reunited with his/our cat and garden but unfortunately I was in the Midwest attending a gathering with my family of origin.
I suppose it was silly of me to build up expectations: I had this fantasy that we would spend our month-long inter-regnum period (between two doctors) doing things that bolster Tad's health like daily walks, morning meditations, time in the vegetable garden, seeing friends.
Instead we came back to our usual routine of being quite domestic only --thanks to a mention from the doctor about being particularly vulnerable to bugs--we're even more domestic.
Tad is more tired than I expected. He can't put his hands in dirt - no doubt the single most healing thing he loves to do. He can't go near the cat litter box and has to be careful not to play too rough with her for fear of open scratches.
The first day he spouted his anger at the fact that he doesn't even really get a proper one month break: the next oncologist already has him down for coming to San Francisco to meet and do some lab work in a few days.
"I was planning on staying away from a frigging hospital for a month," he said to me.
The next oncologist is a bone marrow transplant specialist.
It seems the most promising procedure for long-term cancer-free living is a bone marrow transplant (many of which are done with one's own bone marrow cells causing a etymological conundrum in my opinion), a very painful and potentially lethal affair.
In essence people who get transplants instead of just chemo actually live longer with no sign of cancer returning after five years however they are more at risk of dying during the procedure than folks who just get chemo. The good news is that all of the data we see on AML are skewed by the fact that the median age of someone with this ailment is 67 years old (around 4% of people with AML are actually in Tad's age range).
So I keep praying that, in the same way he surprised everyone at the previous hospital by his robust return to health after chemo, he will surprise them all yet again.
But the part of me who fantasizes about some Hollywood version of Tad walking daily along the beach with me, sometimes twice a day, to slowly rebuild muscle mass, lung capacity, heart rate; the part of me that imagined some other version of Tad transformed by the specter of death into some go-getting extroverted super hero is letting go slowly and remembering how amazingly well he knows what is good for him. Right now it is lots of rest, reading and lying low. My job is to love him and calm my own fears that that might not be enough to keep him alive through the next round of hell.
I had been looking forward to being there when Tad was finally reunited with his/our cat and garden but unfortunately I was in the Midwest attending a gathering with my family of origin.
I suppose it was silly of me to build up expectations: I had this fantasy that we would spend our month-long inter-regnum period (between two doctors) doing things that bolster Tad's health like daily walks, morning meditations, time in the vegetable garden, seeing friends.
Instead we came back to our usual routine of being quite domestic only --thanks to a mention from the doctor about being particularly vulnerable to bugs--we're even more domestic.
Tad is more tired than I expected. He can't put his hands in dirt - no doubt the single most healing thing he loves to do. He can't go near the cat litter box and has to be careful not to play too rough with her for fear of open scratches.
The first day he spouted his anger at the fact that he doesn't even really get a proper one month break: the next oncologist already has him down for coming to San Francisco to meet and do some lab work in a few days.
"I was planning on staying away from a frigging hospital for a month," he said to me.
The next oncologist is a bone marrow transplant specialist.
It seems the most promising procedure for long-term cancer-free living is a bone marrow transplant (many of which are done with one's own bone marrow cells causing a etymological conundrum in my opinion), a very painful and potentially lethal affair.
In essence people who get transplants instead of just chemo actually live longer with no sign of cancer returning after five years however they are more at risk of dying during the procedure than folks who just get chemo. The good news is that all of the data we see on AML are skewed by the fact that the median age of someone with this ailment is 67 years old (around 4% of people with AML are actually in Tad's age range).
So I keep praying that, in the same way he surprised everyone at the previous hospital by his robust return to health after chemo, he will surprise them all yet again.
But the part of me who fantasizes about some Hollywood version of Tad walking daily along the beach with me, sometimes twice a day, to slowly rebuild muscle mass, lung capacity, heart rate; the part of me that imagined some other version of Tad transformed by the specter of death into some go-getting extroverted super hero is letting go slowly and remembering how amazingly well he knows what is good for him. Right now it is lots of rest, reading and lying low. My job is to love him and calm my own fears that that might not be enough to keep him alive through the next round of hell.
Saturday, May 15, 2010
phase one: nearly over
While I was sitting at the airport waiting to embark on a flight to see family in Michigan Tad called me from the hospital.
"Are you sitting down?"
I could tell from the lilt in his voice that it was good news though one part of my brain did think "oh shit! what now?"
It's the same part of my brain that has a little mini-panic every time I call and can't get through by phone.
I know the signal isn't great in that room, I know he doesn't always hear his cellphone ring, I know he can't rush and grab it if he's in the bathroom. Still my first thought is: "There's something wrong."
So I was delighted when he told me he was going home on Monday.
This threw a little bit of a wobbly into our plans since I was hoping to drive him down to Santa Cruz myself AFTER my extended weekend visiting family and attending a wedding. A Monday discharge would make that impossible.
The star of this whole show is without a doubt Tad's immune system. It has surprised even the most seasoned doctors by its resilience. It has made liars out of a couple more who promised us hair falling out, possible opportunistic infections and a slow rebuilding of his immunity - at least three weeks. But the actual healthy results would be very disappointing to any decent disaster lover.
He will be back at the hospital in a month for a second round of chemo but in the meantime he gets to go back to Santa Cruz and relax, get back to living life.
We seem to have won the first battle even if we have by no means won the war.
I can still remember only a few weeks ago discovering my favorite moment of the day. Very early in the morning, just as I was waking up, in that 10 or so seconds that it takes me to step out of my dreams and into my real life I was able to both be awake AND not be aware that my beloved may be dying.
Then after this very brief hiatus reality struck. I reminded myself: Oh yes Tad has leukemia. And the pit of sorrow started up yet again.
How much our worlds can change in just a few weeks (and sometimes even in the blink of an eye).
"Are you sitting down?"
I could tell from the lilt in his voice that it was good news though one part of my brain did think "oh shit! what now?"
It's the same part of my brain that has a little mini-panic every time I call and can't get through by phone.
I know the signal isn't great in that room, I know he doesn't always hear his cellphone ring, I know he can't rush and grab it if he's in the bathroom. Still my first thought is: "There's something wrong."
So I was delighted when he told me he was going home on Monday.
This threw a little bit of a wobbly into our plans since I was hoping to drive him down to Santa Cruz myself AFTER my extended weekend visiting family and attending a wedding. A Monday discharge would make that impossible.
The star of this whole show is without a doubt Tad's immune system. It has surprised even the most seasoned doctors by its resilience. It has made liars out of a couple more who promised us hair falling out, possible opportunistic infections and a slow rebuilding of his immunity - at least three weeks. But the actual healthy results would be very disappointing to any decent disaster lover.
He will be back at the hospital in a month for a second round of chemo but in the meantime he gets to go back to Santa Cruz and relax, get back to living life.
We seem to have won the first battle even if we have by no means won the war.
I can still remember only a few weeks ago discovering my favorite moment of the day. Very early in the morning, just as I was waking up, in that 10 or so seconds that it takes me to step out of my dreams and into my real life I was able to both be awake AND not be aware that my beloved may be dying.
Then after this very brief hiatus reality struck. I reminded myself: Oh yes Tad has leukemia. And the pit of sorrow started up yet again.
How much our worlds can change in just a few weeks (and sometimes even in the blink of an eye).
Wednesday, May 12, 2010
murmurs of home
The strangest thing happened yesterday.
Quoting a conversation with the oncologist two days ago, Tad will be staying in the hospital another two weeks so he can rebuild his immune system and gain strength. This would make it safe for him to be in the outside world without catching any kind of bug or bleed to death from a minor injury.
Then yesterday the infectious disease doc (the person in charge of managing the infections that come up while the oncologist blasts the hell out of his immune system) suggested he may be going home as early as this weekend.
She says that his immune system is rebuilding itself very quickly, unusually quickly.
The ironic part is that Tad presently has what is no doubt the most impressive symptom he's had since the beginning (well maybe second to the shaking shivers): nearly all of his upper body is covered in a splotchy rash that no one can explain and I'm sparing you the details in my description of the rash. It doesn't hurt per se, it doesn't itch, it just bubbles up and spreads.
Two days ago he was able to take a long hot shower, one of the great luxury moments he's allowed every few days. This consists in taking him off all the lovely tubes for about 20 minutes. The staff then wrap the catheter on his arm with a plastic bag, taping it sealed at both ends. Et voila!
After the shower I helped him dry off his back which was free of any rash at all. It was just on his arms, his forehead and his upper chest.
So yesterday I was quite shocked to discover when I lifted his shirt that it had developed across his entire back. I suggested we call the nurse to explain that this was becoming urgent and that perhaps something could be done to stop the spreading while waiting for the results of the biopsy they'd finally taken that morning.
When she arrived she didn't know what to do so we asked her to call the attending doctor and explain that it had doubled in size in less than twenty-four hours. Thrown off balance no doubt by our request and steadfast in her role to play bumper cars between docs and patients, she replied "Rash?, What rash?"
This only maddened Tad (and me). So we began to rummage for the doctor's business card which she had left with a smile and a "Call me anytime" the first time we met.
Apparently she didn't really mean "anytime". I got a human message service asking for a concise message. Who knew those still existed?
The nurse left and called the same doctor from another line. She came back to the room a few minutes later saying that the doctor was sure it was nothing serious and that she'd be in the next morning.
I've been told by some folks that I'm a bit too harsh on the staff which is no doubt true. At the same time we are clearly navigating systems in which there are many non-spoken rules - the very thing that can drive me around-the-bend crazy.
So we're still waiting to find out what the "Rash that Ate Manhattan" actually is and to find out if, in a few days, Tad will be back in his sweet house or still attached to a tube and a bag.
Quoting a conversation with the oncologist two days ago, Tad will be staying in the hospital another two weeks so he can rebuild his immune system and gain strength. This would make it safe for him to be in the outside world without catching any kind of bug or bleed to death from a minor injury.
Then yesterday the infectious disease doc (the person in charge of managing the infections that come up while the oncologist blasts the hell out of his immune system) suggested he may be going home as early as this weekend.
She says that his immune system is rebuilding itself very quickly, unusually quickly.
The ironic part is that Tad presently has what is no doubt the most impressive symptom he's had since the beginning (well maybe second to the shaking shivers): nearly all of his upper body is covered in a splotchy rash that no one can explain and I'm sparing you the details in my description of the rash. It doesn't hurt per se, it doesn't itch, it just bubbles up and spreads.
Two days ago he was able to take a long hot shower, one of the great luxury moments he's allowed every few days. This consists in taking him off all the lovely tubes for about 20 minutes. The staff then wrap the catheter on his arm with a plastic bag, taping it sealed at both ends. Et voila!
After the shower I helped him dry off his back which was free of any rash at all. It was just on his arms, his forehead and his upper chest.
So yesterday I was quite shocked to discover when I lifted his shirt that it had developed across his entire back. I suggested we call the nurse to explain that this was becoming urgent and that perhaps something could be done to stop the spreading while waiting for the results of the biopsy they'd finally taken that morning.
When she arrived she didn't know what to do so we asked her to call the attending doctor and explain that it had doubled in size in less than twenty-four hours. Thrown off balance no doubt by our request and steadfast in her role to play bumper cars between docs and patients, she replied "Rash?, What rash?"
This only maddened Tad (and me). So we began to rummage for the doctor's business card which she had left with a smile and a "Call me anytime" the first time we met.
Apparently she didn't really mean "anytime". I got a human message service asking for a concise message. Who knew those still existed?
The nurse left and called the same doctor from another line. She came back to the room a few minutes later saying that the doctor was sure it was nothing serious and that she'd be in the next morning.
I've been told by some folks that I'm a bit too harsh on the staff which is no doubt true. At the same time we are clearly navigating systems in which there are many non-spoken rules - the very thing that can drive me around-the-bend crazy.
So we're still waiting to find out what the "Rash that Ate Manhattan" actually is and to find out if, in a few days, Tad will be back in his sweet house or still attached to a tube and a bag.
Saturday, May 8, 2010
could be...might be...maybe is...good news
Remission: noun, 1. (medical) the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity; 2. (theology) remission is the forgiveness of sin.
This whole little wrestling match with the dark angel of leukemia has taught us both to live one day at a time avoiding any possible future tripping, either negative or positive. For the last two weeks I've found myself saying to so many people, "You know we'll just have to wait and see. This isn't a time for making plans."
Thus much to my surprise it was with a bit of trepidation that I took in Tad's voicemail this morning: "I've got real good news. Call me back."
I actually heard the message as I was leaving the pool and was pretty sure I knew what he meant. I decided to go out for lunch first.
I played the voice message for my friend John who also immediately knew what it was all about. The day before the oncologist had told us he would probably be getting back the preliminary results of the second biopsy which would tell us if he had indeed blasted the cancerous cells out of the park or not. He also told us nearly three weeks ago that if we got to "remission" Tad would only need to have two more of these five week stints in hospital with chemo. He finished rather ominously by saying, "And if we can't we'll have a discussion to see where we go from there."
John was giggling with excitement: "Wow - that's such good news!! I'm so excited." Still I wasn't willing to go there for some reason.
Two weeks ago I had no logical explanation for why I would burst out in tears one moment and not the next. Why one song made me cry but not another. Why walking down 20th Street near Dolores Park made me cry more than say 14th Street. Why a friend's mention of the Monterrey Aquarium suddenly brought on tearful memories with Tad but not a mention of Greece.
So unpredictable was this whole emotion thing that I actually found myself saying the most surrealistic thing to my friend Ross: "I know that I just told you a whole litany of really tragic things and I have no idea why I did it with such a matter-of-fact voice or why in ten minutes I may start crying again."
(And I'm not the type to hold back tears out of shame or modesty.)
After lunch I called Tad and told him to wait til I got to the hospital so that he could tell me face to face.
When I arrived he said: "Your wish came true" with a funny smile.
I knew he was referring to all those times the first week when we sat in the hospital room holding each other, crying together and me saying, "I really don't want you to die. I hope we get to spend a lot more time together."
So what we now know is that -
1) quantitatively the cancer cells are no longer perceptible in his bone marrow and
2) qualitatively this leukemia is the genetically the easiest kind to knock out.
The difference between 'remission' and 'cure' however is vast and is measured in years. Five years to be exact. If after five years the little bugger hasn't started replicating like crazy and taking over his immune system again then he is considered cured.
As the definition says - remission is the absence of disease activity, not the absence of disease.
Inch allah!
This whole little wrestling match with the dark angel of leukemia has taught us both to live one day at a time avoiding any possible future tripping, either negative or positive. For the last two weeks I've found myself saying to so many people, "You know we'll just have to wait and see. This isn't a time for making plans."
Thus much to my surprise it was with a bit of trepidation that I took in Tad's voicemail this morning: "I've got real good news. Call me back."
I actually heard the message as I was leaving the pool and was pretty sure I knew what he meant. I decided to go out for lunch first.
I played the voice message for my friend John who also immediately knew what it was all about. The day before the oncologist had told us he would probably be getting back the preliminary results of the second biopsy which would tell us if he had indeed blasted the cancerous cells out of the park or not. He also told us nearly three weeks ago that if we got to "remission" Tad would only need to have two more of these five week stints in hospital with chemo. He finished rather ominously by saying, "And if we can't we'll have a discussion to see where we go from there."
John was giggling with excitement: "Wow - that's such good news!! I'm so excited." Still I wasn't willing to go there for some reason.
Two weeks ago I had no logical explanation for why I would burst out in tears one moment and not the next. Why one song made me cry but not another. Why walking down 20th Street near Dolores Park made me cry more than say 14th Street. Why a friend's mention of the Monterrey Aquarium suddenly brought on tearful memories with Tad but not a mention of Greece.
So unpredictable was this whole emotion thing that I actually found myself saying the most surrealistic thing to my friend Ross: "I know that I just told you a whole litany of really tragic things and I have no idea why I did it with such a matter-of-fact voice or why in ten minutes I may start crying again."
(And I'm not the type to hold back tears out of shame or modesty.)
After lunch I called Tad and told him to wait til I got to the hospital so that he could tell me face to face.
When I arrived he said: "Your wish came true" with a funny smile.
I knew he was referring to all those times the first week when we sat in the hospital room holding each other, crying together and me saying, "I really don't want you to die. I hope we get to spend a lot more time together."
So what we now know is that -
1) quantitatively the cancer cells are no longer perceptible in his bone marrow and
2) qualitatively this leukemia is the genetically the easiest kind to knock out.
The difference between 'remission' and 'cure' however is vast and is measured in years. Five years to be exact. If after five years the little bugger hasn't started replicating like crazy and taking over his immune system again then he is considered cured.
As the definition says - remission is the absence of disease activity, not the absence of disease.
Inch allah!
Friday, May 7, 2010
tornadoes passing in the night
A few nights ago I had a dream - an unusual thing these days as I haven't had very deep sleep since the original leukemia diagnosis.
In this dream Tad and I were in a vast house with other people looking through giant picture windows out on the evening sky - not too different from the huge hospital window that looks out over the Golden Gate where we watch the orange sunsets every night.
In the dream we were looking at a huge storm brewing above a nearby city and suddenly I saw tornado clouds descending towards the earth, clouds I hadn't seen since my childhood in Michigan.
I warned everyone at the party these were tornadoes forming and we all needed to go under tables to protect ourselves. Miraculously the killer winds kept going past us but unlike in real life no windows burst, no objects went flying, no roof was ripped off. They just passed us by.
That was the end of the dream.
Yesterday after a rather long unwanted rant about how he felt trapped in jury duty the day before and how the judge was vindictive and how he almost didn't get out, our oncologist shared with us a bunch of incomprehensible geeky genetic information which he presented as "very good news." I could see from his excitement once again that all this scientific stuff really turned him on but I could tell from Tad's face that he too had misunderstood.
"So what does this mean in laymen's terms?," he asked.
"Basically it means that the genetic make up of your leukemia has the most positive prognosis."
That same day the infectious disease MD Dr Shelly Gordon, the feisty, brilliant kind of older woman you really want to have on your team, told Tad that he was actually overcoming his various infections quite quickly for someone who's immune system had been shot to hell by a constant flow of toxic chemicals for seven straight days (she didn't exactly say all that).
Indeed the diarrhea, fevers, shakes, and loss of appetite all seemed to have past. Right now he's dealing with a painful mouth and throat infection that they say is no doubt caused by antibiotics themselves (one of those fun fungal infections).
So though we are both showing all the symptoms of two people afraid to jump to any positive conclusions - we're both pretty happy that for now the tornadoes seemed to have past and we're both intact except for a few scratches here and there.
(Within the next 48 hours we should know from yesterday's biopsy if this first round of chemo actually kicked the cancer into remission or not - this information will have a big impact on what the next few months look like including the likelihood of whether Tad will be around to see the new Bay Bridge).
In this dream Tad and I were in a vast house with other people looking through giant picture windows out on the evening sky - not too different from the huge hospital window that looks out over the Golden Gate where we watch the orange sunsets every night.
In the dream we were looking at a huge storm brewing above a nearby city and suddenly I saw tornado clouds descending towards the earth, clouds I hadn't seen since my childhood in Michigan.
I warned everyone at the party these were tornadoes forming and we all needed to go under tables to protect ourselves. Miraculously the killer winds kept going past us but unlike in real life no windows burst, no objects went flying, no roof was ripped off. They just passed us by.
That was the end of the dream.
Yesterday after a rather long unwanted rant about how he felt trapped in jury duty the day before and how the judge was vindictive and how he almost didn't get out, our oncologist shared with us a bunch of incomprehensible geeky genetic information which he presented as "very good news." I could see from his excitement once again that all this scientific stuff really turned him on but I could tell from Tad's face that he too had misunderstood.
"So what does this mean in laymen's terms?," he asked.
"Basically it means that the genetic make up of your leukemia has the most positive prognosis."
That same day the infectious disease MD Dr Shelly Gordon, the feisty, brilliant kind of older woman you really want to have on your team, told Tad that he was actually overcoming his various infections quite quickly for someone who's immune system had been shot to hell by a constant flow of toxic chemicals for seven straight days (she didn't exactly say all that).
Indeed the diarrhea, fevers, shakes, and loss of appetite all seemed to have past. Right now he's dealing with a painful mouth and throat infection that they say is no doubt caused by antibiotics themselves (one of those fun fungal infections).
So though we are both showing all the symptoms of two people afraid to jump to any positive conclusions - we're both pretty happy that for now the tornadoes seemed to have past and we're both intact except for a few scratches here and there.
(Within the next 48 hours we should know from yesterday's biopsy if this first round of chemo actually kicked the cancer into remission or not - this information will have a big impact on what the next few months look like including the likelihood of whether Tad will be around to see the new Bay Bridge).
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